Author Archives: trishdainton
Tomorrow ( 25th November 2019), would have been mine and Steve’s 31st Wedding Anniversary. My 30th Wedding Anniversary blog can be seen HERE where links to previous Anniversary blogs can also be found.
Apart from commemorating Steve and providing an up-date of what has been happening since my last blog, on this occasion I am sure that Steve would approve of sharing the focus. Taking this opportunity to commemorate another very special human being – Mark Harrison. Mark collected his Angel Wings on September 7th and by his side was his sister – Jacqueline (Jackie) Harrison.
Readers of this blog will know Mark and Jackie, and their border terriers Sybil and Spike, have been interwoven throughout my blogs. Jackie and Mark’s story of being a family affected by Huntington’s disease (HD) has been humbling and inspiring to all of us in the HD Community and way beyond. Indeed, they have touched the hearts and minds of many who had previously not heard of the disease or known much about it. From Joe Public; to sports personalities; to celebrities; and even members of the Royal Family!
One such person who has been touched by the Harrison family story is the writer – Alice Peterson. Alice recently released a new book called If You Were Here. The book is set within the theme of HD and fundamentally focuses on the dilemmas of testing. I pre-ordered a copy of the paperback and I was not disappointed. The link HERE takes you to my Amazon review.
In the above linked review, I made a reference to the Case of ABC v St George’s Healthcare & Others which I have previously blogged about. As I am typing this particular section, the Case is being heard before Mrs Justice Yip in Court 15 of the Royal Courts of Justice. The Case opened on the 18th is expected to last two weeks, with closing submissions to be heard in January 2020. A link to the initial BBC coverage can be seen HERE.
On the subject of books and writing; I can’t say I have accidentally come across references to myself and Steve again in other peoples’ work as covered in my last blog. However, I was approached in July via social media by a production company working with Channel 5. They had seen the BBC article and wanted me to share our experience of being Concorde passengers in a television documentary.
The documentary was sold to me as being made for screening next year to coincide with the 20th Anniversary of the fateful Paris crash of Flight 4590 which will be in July 2020. There were parallels between our story and that of many passengers who died. Like us, they had been part of a package tour combined with a cruise.
I gave an interview to camera and the team then shot scenes of me looking at photos of myself and Steve at a kitchen table and reflecting on happier times. Understandably no guarantee of inclusion could be made but I was told they would get back to me with a screening time and programme title once known.
Sadly my piece to camera didn’t make it into the final cut. In fact, it looks like in the process of making the documentary its raison d’être shifted somewhat.
I’m also sorry to say that the final cut of the film didn’t include your interview. This was simply because of time limitations, 45’ isn’t long to tell a complicated story. It was in no way a reflection on the quality of your interview and story and I’m just sorry that we didn’t have longer to do it justice.
The timing of screening was a real surprise given it was to be only a few weeks after I had given my interview. Not July 2020 as originally planned. The final title was given as ‘Inside The Cockpit: The Concorde Crash’. On watching the documentary I can see they packed in a lot and my piece would not really have fitted in. Perhaps they were hedging their bets in case other parties dropped out?
The Production Company/Channel 5 own the interview I gave and reserve the right to use its content in other programmes. You never know… Mine and Steve’s piece may still find its way into a separate programme. Here’s hoping we are not talking ‘It’ll Be Alright on the Night’!
Still on the subject of documentaries; if you are wondering what is happening about Harry and Hannah Dainton’s story and my quest to try getting it on ‘Murder, Mystery and My Family’ (see HERE for further blogged background) all I can say is Watch This Space!
Bringing us back to Mark; there is a fantastic member of the HD Community – Allan Adams – who has been creating YouTube videos for the ‘Give a Toss for Huntington’s Disease’ and ‘Sybil On Tour’ campaigns. His latest video is an updated version of an earlier one featuring the Harrisons to reflect Mark’s passing. It can be seen HERE
In Allan’s video he uses the statement ‘He will not lose the capacity to love’. That is very clear from the photos, many of which show Mark’s affinity with animals. Not least, this one taken by Jackie.
16 April 1972 -07 Sept 2019
Not losing the capacity to love is something I recognised in Steve. He loved animals and they loved him. Indeed, anyone who knows our story or has read MY BOOK will know I went to extraordinary lengths to make sure Steve could always have a ‘cat’ in our flat to channel his sweetest of love and affection towards. Ruby and Ruby-Tuesday are still with me and also doing their bits for HD Awareness. Here’s their ‘Give a Toss for Huntington’s Disease’ video.
You can see the clear joy in Steve in this snap where his sister’s dog – Meena – has decided his lap is the most comfortable place to settle.
Another example demonstrating a connection is this set of photos taken in 2007 at the Grand Hotel in Llandudno.
- Steve is enjoying the sun on the balcony (snap 1). I go inside to get a drink and poke my head out when I hear him talking to someone.
- It wasn’t a person on another balcony, it was his new best friend and confident (Sid the Seagull – snap 2).
- Something has clearly caught their attention happening below them (snap 3).
- When I came back I rewarded Sid for keeping an eye on Steve and his therapy session with a biscuit (snap 4).
Yep, there are signs telling guests ‘DO NOT FEED THE SEAGULLS’ but Sid had earned his meal. He hadn’t simply taken a biscuit off the plate on the table and flown off. Sid had given Steve his company and both of us a smile. Okay, I confess I didn’t check if Sid was male or female, and I know technically Sid was a bird as opposed to an animal but you are going to have to indulge me on that one.
I am going to end on a new poem for Steve and also a link to a rather long slide show (just over 8 minutes) which I created for our twenty-sixth Anniversary. I can’t believe five years have passed since it was made. Time seems to have stood still in so many ways.
Another Angel joins you walking through the Pearly Gate;
No doubt a walk of confidence, with posture tall and straight.
The Huntington’s now left below, relieved of stress and pain;
In Heaven it’s a better place and all are whole again.
But the distance between here and there is not so far away,
And I know that you pop back and forth to help me every day.
Within this flat it feels as though you’re sitting here with me;
Still communicating as we read, and watch TV.
Reading stories of HD in forms of fact and fiction;
Reminders of the secrecy, and tales of family friction.
I’m grateful you were thoughtful and you didn’t hesitate,
To tell me of the HD risk and what could be your fate.
The choice to not have children was therefore ours to make;
I don’t regret the personal choice and steps I had to take.
Perhaps the lack of children and lost channel for affection,
Was somehow felt by animals to make a real connection?
Now thirty-one years and counting… 26 Anniversary Video
Happy Anniversary Sweetheart!
PS Make sure Mark gets a glass of bubbly; Sybil and Meena get some treats and ‘Sid’ or Siderina gets a biscuit!
Today we celebrate Steve’s 58th birthday. I’m here, and Steve is still here too in his own way.
The conventional celebrations are somewhat hampered on account of Steve not being here in the flesh and blood form of carbon. He is physically now a more static form of carbon (ashes) but certainly here in spirit as far as I am concerned. Not an alcoholic spirit I hasten to add, but a very kind and awesome spirit. In the same manner as he was a very kind and awesome living and breathing human being.
As ever, I wanted to come in and celebrate Steve by marking the occasion with a birthday blog. Previous birthday blogs can be read here:
May 2011 – I MAY REGRET THIS…
May 2012 – TOASTING & BOASTING
May 2013 – ONE DOSE OF TWEETMENT OR TWO?
May 2014 – THE SHOW MUST GO ON
May 2015 – THE FAIRNESS OF AWARENESS
May 2016 – POETRY IN EMOTION
May 2018 – SUPERSONIC FLIGHTS & HUMAN RIGHTS
My last birthday blog (see above link for May 2018 – SUPERSONIC FLIGHTS & HUMAN RIGHTS) talks about an amazing find where I chanced upon seeing a BBC on-line article which featured me and Steve. They quoted from a piece I had submitted to a Concorde Membership website. I had not been aware they were using my story so it was sheer luck that I saw it that day.
A few months ago I was doing an internet search on something else and, once again, I happened upon a link to a website which threw up something wonderful. It was a link to pages in a new book about Concorde.
Much like the BBC article, to my utter surprise I found myself reading mine and Steve’s names on the screen in front of me. Regular readers of my blog will, by now, know I like to think it was not just a case of being luck or a fluke. Instead, it being more a case of Steve communicating/intervening.
The book in question is called ‘LAST DAYS OF THE CONCORDE The Crash of Flight 4590 and the End of Supersonic Passenger Travel’. Its author – Samme Chittum – works at Smithsonian Books. In her book, Samme has cited the BBC article and pulled out my particular entry for her chapter – ‘Final Farewells’. See the slideshow below for the entry, alongside mine and Steve’s names being given in the Index and source material.
I felt honoured but also, If am am honest, there was a little bit of me that got a bit annoyed. Once again I had to come across my own words by accident. For courtesy sake, if nothing else, the BBC and Samme should have made efforts to ask permission first. That said, once something is out there on the World-Wide-Web it takes on a life of its own.
To be fair, I am happy for people to use my words and our story as long as they use them in such a way as to raise awareness of Huntington’s disease (HD). Both the BBC and Samme left in the Huntington’s reference. I am very pleased they picked up upon the poignancy and retained integrity to that end.
Flight 4590 was the flight which crashed on its take off from Paris in July 2000. It was not the last flight ever made by Concorde but in a market where luxury travel was already struggling to be profitable, questions over its safety now led to its rapid demise. A very deep and personal tragedy for those on board and their loved ones; a tragedy for the industry; and also a tragedy for the people of Paris. Devastated no doubt that such an accident happened, and that such an iconic symbol of aviation was effectively lost on their watch.
Like many people, Steve and I saw the 2000 news footage on television that day. First of all our hearts broke for the people who lost their lives. It was obvious no one could have survived and lives could also have been lost in the hotel she crashed into. Sadly it was confirmed that the crash resulted in the loss of 113 lives. As this news article writes, some who died were, like us when we flew, flying to celebrate a special event having saved for many years.
There was a secondary emotion on that day too. Our hearts sunk for the loss of such plane knowing it could surely mark the end of Concorde’s reputation. She was beautiful and elegant. She was special. We could never have imagined that our own names and story would be linked to that very event in a book some eighteen years later.
Thousands of people have travelled on Concorde. There have no doubt been many people writing about experiences of flying on her or even just seeing her fly by. It is emotionally humbling to think we have been selected to represent a couple’s own human story in the history of Concorde.
Forward fast to April 15th 2019 and that sinking feeling was experienced again when watching one of the most symbolic icons of Paris go up in flames. The Notre-Dame Cathedral.
Notre-Dame will be rebuilt with time. Whether it will be reincarnated as a modern phoenix or sympathetically restored to reflect its past more than its future, the Notre-Dame, as it stood on the banks of the River Seine in 1988, will always have a place deep in my heart. Beautiful; strong; and comforting even to those like me who are not religiously inclined.
I posted in my blog WARNING SIGNS & TUBE-TRAIN LINES how we officially got engaged in Paris during a romantic trip booked especially for the occasion. I have very few photos left of that trip, and sadly none with Steve in. However, I do have a photo taken in fun. I am leaning on a rather glorious lamppost in the gardens of Hotel de Ville. In the background you can just about make out the famous spire that came unceremoniously crashing down in the blaze. Paris will always have a place in mine and Steve’s heart alongside Concorde.
We visited Paris only once again after the engagement trip. There were so many other places to visit. As time went by though, and Steve was getting less able to travel, we would sometimes take the Eurostar to places like Brussels and Lille. It was relatively easy to get from home to Waterloo Station where the train originally left from.
By staying in hotels very near the destination stations we could stay for just a couple of nights with minimum fuss and luggage and still feel ‘normal’. Paris was also easy by train but the relaxed pace of Lille, in particular, suited us.
Our last such trip was in July 2005. We had booked for a couple of nights to stay in Hotel Ibis in Lille Town Centre. The relatively easy travelling was somewhat marred where our departure journey was July 8th 2005.
As you can imagine, being within 24 hours of the London bombings there were many issues of security on a practical level, and fear on a psychological level, to deal with. We opted to put our fears aside and do the British thing of not letting the terrorists defeat us.
I am so very, VERY glad we still took the trip. We had a lovely time and I still have a few photos, some of which are below. One is Steve standing in the Town Centre which was taken by me. Another is one Steve took of me. I took the last photo nearby where we were staying. Probably on our way back to the hotel after a lovely day but Steve is now beginning look tired bless him.
Unlike the earlier photo, Steve is leaning to one side with his gait recognisable. He is obviously telling me something. Most likely telling me to hurry up so that we can get back to the hotel for a cuppa.
He had a point. whereas Steve was more a natural photographer, it had probably taken me ages to get the name of the shop and street in the frame. All in all though we were not letting Huntington’s beat us. Still enjoying life to the full. As you can imagine, I miss travelling with Steve terribly!
Today we will be watching Queen DVDs and eating Belgian Chocolates. I no longer travel as it is not the same without Steve. I managed to find Canary Wharf have a branch of Godiva so have bought a large ballotin replicating the kind on indulgences we would have treated ourselves to when travelling to France and Belgium. I will help Steve with his share of course 😉
I will close the post with a new poem for Steve, but first an up-date on Harry Dainton (my post GIRL WITH A PEARL HEARING refers). There has been one development (excuse the pun). I had a tip off that a few days ago a Public Notice went up where the Plans have been re-submitted. I hope to add my two-penneth worth to try getting some consideration given to the fate of Harry and the others but we shall see.
As for ABC vs St Georges’ (initially highlighted in my post WARNING SIGNS & TUBE-TRAIN LINES), as far as I know the Case is still expected to go to trial in 2019. However, there has been no news of progress, be it a trial date or an out of court settlement.
It is a tad frustrating that in my job I do occasionally work at the hospital at the centre of the Case. I even deal with the Consultant at the centre of it (the one who accidentally gave the Huntington’s diagnosis away). However, it would be unprofessional to make direct enquiries with the parties themselves so I have to keep schtum. Somehow I don’t think the Trust or Consultant are likely to be subscribers to this blog. Then again, who knows where my writings will end up being reproduced next eh?
Another occasion when took by surprise,
As our names appear sharply in front of my eyes.
Sure enough Sweetheart, as I read on,
Our names again linked with such an icon.
Clearly our story has resonance where,
Others who read it feel they want to share.
It’s wonderful knowing that after we’re dead,
It’s not only here that our story is read.
In here I share memories; photos shared too,
As I focus on good times that I spent with you.
From the fountains in Paris, near Hotel de Ville;
To a peaceful Town Square in the Centre of Lille.
I do see the tiredness that HD could bring;
I see more than that though, you were not giving in!
It may not be Belgium were we spend today,
But we’ll still celebrate in our own special way.
Happy Birthday Sweetheart!
Today marks eight years since Steve was given his Angel Wings. On his Angelversary I have come in to give a brief update on things, and post up a new poem for Steve.
Previous Angelversary posts can be seen here:
January 2012 – Moving Pictures
January 2013 – Ring a Ring o’ Roses
January 2014 – Inspiration not Frustration
January 2015 – Reaching for the Teaching
January 2016 – Coincidence or Sixth Sense?
January 2017– Procrastinating over the Celebrating.
In my previous blog I wrote about my quest to try getting more information on the case of Harry and Hannah Dainton. As yet, nothing further has been found in respect of possibly being able to challenge the legality of Harry’s death sentence. It was always a long shot given the age of the case but still worth trying I feel.
There has been some news though regarding the Shepton Mallet Prison redevelopment and the position on the burials. Whilst it does not confirm Harry’s presence still being exactly where he was buried, a statement from the Archaeologists does provide a reassurance of sorts. It says:
The burials are in an area of tarmacked ground. The burials themselves were not exposed by our previous archaeological evaluation. The trench was excavated deep enough only to confirm the presence of grave cuts in this area; it was not excavated deep enough to expose bones/coffins. At the close of the evaluation, the trench was backfilled with the material which had been displaced from the trench, and it was re-tarmacked. The burials have not been disturbed since the evaluation, and remain sealed underneath a layer of modern made ground and modern tarmac.
There is as yet no programme for starting further groundworks at Shepton Mallet prison. The burials will remain in situ unless they are to be disturbed as part of the development, in which case a methodology has already been agreed with ourselves (Cotswold Archaeology), City & Country, Mendip District Council and the South West Heritage Trust for the removal of the burials under archaeological conditions. This process would end with the reburial of the remains at a suitable site – possibly the cemetery at Waterloo Road, Shepton Mallet, although this is TBC.
This indicates the prisoners have not been disturbed by the recent work on site; and that they will be left alone for a while at least. What it cannot answer, however, is whether all the bodies remain there. The fact that something must have happened in a previous redevelopment needing for their area of ground to be tarmacked over in the first place could signify an earlier developer might not have acted so responsibly.
I haven’t sorted out a date, but at some stage I feel I ought to make a visit to Shepton Mallet Prison before the redevelopment. I would like to think the relevant parties would invite me and others to any reburial but we shall have to wait and see.
Whatever the case, I need to revisit the site plans and try getting my head around where exactly the tarmacked ground over Harry is likely to be. I want to be someone going to say a few words to/over Harry, rather than just a tourist with morbid curiosity.
Regarding the case of ABC vs St George’s Healthcare, I noticed a few blogs have been mentioning they expect it to go to court in 2019. One such blog can be seen HERE.
If, as expected, the case goes to trial in 2019, the court will have to decide whether Jane was owed a “duty of care” by her father’s doctors even though she had never been their patient or at any of the facilities at which her father was treated. More broadly, the court will ask if the genetically inheritable characteristic of a condition like Huntington’s disease means that a parent’s confidential diagnosis belongs to their children as well. With further advances in genetic testing, claims to a relative’s genetic information may become increasingly difficult to deny. As one scholar has put it, it will be more common for the relative of a patient to demand access to the patient’s record by declaring – with more than a hint of truth – “I have a claim, because it is about me.”
Truly one to watch as it could have such game-changing ramifications. That said, the slow way in which the world turns when it comes to enforcing changes in policy, and thereafter transferring that into practice, makes me wonder if a cure for Huntington’s would come into place quicker?
On another matter linked to policy and changes; I have previously blogged about insurance under Supersonic Flights & Human Rights . There has been a bit of a development. Sadly though, it is not what I would call real progress. If anything, I take it more as a step back rather than forward.
There was real hope that the UK Huntington’s disease and other genetic conditions organisations would be able to work with the insurance sector, supported by the government, to think again about the way they discriminate against people.
In October 2018 the Huntington’s Disease Association (HDA) announced on their website ‘New code on genetic testing and insurance launches‘. When looking at the Code and at the Guide for Consumers I was dismayed to see it was simply more of the same.
Firstly; it is still a voluntary thing, therefore not all companies have to abide by the Code. Secondly; even if companies do sign up to the Code they are still legally allowed to discriminate against those with Huntington’s.
If you are applying for insurance from a company who has signed up to the Code, they agree to act according to its rules. This means that the company has committed to the following:
• To never require or pressure you to have a predictive or diagnostic genetic test, under any circumstances
• To not ask for, or take into account the result of a predictive genetic test if you are
applying for insurance with the only exception being if you are applying for life
insurance over £500,000 and you have had a predictive genetic test for Huntington’s
Disease. Only in this circumstance do you need to tell the insurance company the
result of the test, if they ask
Below is a list of the only condition(s) for which insurers may request disclosure of
predictive genetic test results in accordance with the financial limits set out in
• Huntington’s disease, for life insurance coverage totalling above £500,000 per
Source: Code on Genetic Testing and Insurance A voluntary code of practice agreed between HM Government and the Association of British Insurers on the role of genetic testing in insurance October 2018
Re’ the above quoted extract, please note if you have not opened up the link to see the full document I have not cut the Appendix 1 quote short. It really does just list one condition in it. If that isn’t discrimination in all it’s true blatancy then I don’t know what is!
Incensed by seeing what I would call a lost opportunity I asked the HDA why there had been nothing really done. They gave me what I would call the rather beige reply of:
The HDA and SHA have written a joint letter to the Equalities Commission to urge them to pick up Huntington’s disease being the only condition listed. We have obtained a place on the DWP ‘Disability Champion Access to Insurance’ working group to continue to raise this and are attending the next ABI genetics working group. So this is work in progress and we have a listening ear at last.
I say beige reply as I couldn’t understand why they were not doing more to ask the HD Community to add weight to the cause? I could be wrong of course. I would love to find no end of HDA Members have been approached directly, or asked for input via newsletters; Branch discussions and social media pushes etc. Do feel free to correct me but sadly I suspect there has been no real engagement.
Thankfully, the Scottish Huntington’s Association (SHA) appear to bee more engaged with the needs of their Members. When getting their SHAre Newsletter I read they were highlighting a Petition had been set up by their Chief Executive – John Eden. The Petition can be signed HERE. I have to confess I am disappointed the number of signatures is tiny as at time of my post ( under 220) but maybe a push by people who care about discrimination in general will help.
As the SHA say in their Newsletter
What is really needed now is for families affected by HD to tell their stories of trying to access protection insurance and to get behind a new petition to make their voices heard
So, how will I be spending Steve’s Angelversary?
When publishing my blog posts, if I have not already done a blitz on Facebook and Twitter beforehand, I usually spend a good chunk of the day getting my blog out there to people. Apart from WordPress Followers of this blog, of which I am truly grateful to you guys, not that many people bother to read or respond. Nevertheless, I still feel the need to share and commemorate Steve, who still inspires me and hopefully inspires others.
This year tough I will not be engaging with social media. It is not because I have given up, and certainly not because I don’t want to share mine and Steve’s story any more. Neither is it because I am not keen to use it as a platform to keep the HD Community up to date on subjects such as ABC vs St George’s Healthcare. It is because I took a decision at the end of last year to go cold turkey on social media for January.
I don’t drink; don’t smoke; have no social life to cut down on as it were. If I went on a diet I suspect my colleagues would be looking up Eating Disorder Clinics as I am apparently underweight for my size. That said, my colleagues only get sight of my very skinny wrists and bony neckline. They don’t see my spare tyre around my waist thank god!
Once I have pinged this blog on WordPress, and maybe put a link to it on the HDA Message Board for friends who will be thinking of me and Steve, I will watch a Queen video or two (the band, not HRH) and gear myself up for the big event of the day.
I couldn’t face going to the cinema to watch Bohemian Rhapsody without Steve by my side. I have pre-ordered the DVD on Amazon but it is not likely to be sent until March. I have plenty of others to watch with him in spirit though.
As for the big event I refer to…
In my blog ON THE WINGS OF AN EAGLE & DOVE; CARRIES FAITH, HOPE, & LOVE, written for what would have been Steve’s 56th birthday, I highlighted how I (for that read we) would be watching Crystal Palace Football Club on the television. They were playing a very important match. One that could decide their fate as to whether they stay in the Premier League or get relegated. They stayed up I am pleased to report.
Later today, Palace will be on BT Sport2 playing Tottenham Hotspur Football Club in the third round of the FA Cup. It is particularly poignant as Tottenham are effectively Steve’s second team. His dad was a fan having been brought up in the Tottenham area before marrying and moving to Beckenham. My blog Playing for Laughs touched on this.
The game will have finished by 20:20 hours which is approximately the time Steve drew his last breath. Eight years on but I still like to mark the time in silence. It is always the anniversaries and special occasions that have the toughest gradients in the pathway of grief.
Whether anyone else gets to see and read this blog it doesn’t really matter. What does matter is that I have done it. To help myself, and for Steve to know wherever he is that he is remembered by me.
As I often do, I have ended with a picture and a poem. Actually, we are talking a couple of pictures. Both taken on holidays in Jersey. One from 1991 and the other from 1996. We visited Jersey a few times, initially sparked by our love of the programme Bergerac. Maybe my obsession to play detective and investigate thing comes from mine and Steve’s love of true crime programmes, and of fictional detectives like Bergerac? That said, I am more Caramac than Bergerac.
Although I could never give up chocolate, I would like to think Steve is proud of me for giving up the booze; for not losing my tenacity to find answers and get stuff done; and, of course, for never giving up on him!
Eight whole years have come to pass and still I think of you;
With no regret, my sights now set, on what is left to do.
The first few years brought pain and guilt; trying to find a reason,
To why I still woke up each day; each week; each month; each season.
Another anniversary and only time will tell,
if time was simply wasted or was time that’s been spent well.
And days I fill with searching for that extra information,
To help to form some clarity where needing explanation.
A fool with too much time on hands, I’m sure that’s how I seem;
We can’t take on the world my love, but surely we can dream?
The Dainton hung; the daughter lied to; clear discrimination;
It’s not like any one of these impact our situation.
There’s plenty people out there who can impact if they care,
So does it really matter if this input leads nowhere?
That’s not the point though is it, the point is One shared Vision;
As long as I feel you’re with me, I know we’re on a mission.
Perhaps I could add one more link which I know Steve will appreciate:
Happy Angelversary Sweetheart XXX
Today would have been mine and Steve’s ‘Pearl’ Wedding Anniversary. Thirty years ago today we tied the knot and although the ends have been pulled apart, as readers know by now, I still like to come in here and mark the day. My previous anniversary posts can be seen here:
2012 SELF INDULGENCE
In my previous blog I touched on a little project I had taken up. I wanted to look into the case of Alfred Henry ‘Harry’ Dainton. I can’t recall exactly when I heard mention of a murder and murderer in the Dainton family. Reassuringly though, it was also mentioned that the events happened a long, long time ago. In 1891, Harry was convicted of murdering his wife – Hannah – by drowning her in the River Avon. With the advent of the internet I had always planned to do a bit of research into their story when I had the time.
When meeting some of Steve’s family in October 2017 at his cousin’s funeral (as mentioned in my blog HERE) I discovered Steve’s uncle had also shown an interest in finding out more about Harry. He had even spent a day at the National Archives in Kew to see what they had on the case. At least I knew then that I was not the only one who was curious.
To find out more for myself, I ordered the Trial Notes Case File from Kew. As requested, the File arrived in the form of 52 JPEGs. You can see one of the JPEGs, along with the text of a rather long press cutting submitted as part of the Case File (re-typed verbatim by me), in Claire Sully’s blog HERE and HERE.
When, in my last blog I used the word ‘spooky’, it was not so much to do with ghosts – although Shepton Mallet is said to be ‘ Britain’s most haunted prison’. The spooky aspect was more to do with the timing of my getting my butt into gear and properly going on-line etc.
Harry was buried in December 1891 in unconsecrated ground within the Prison walls. It was reasonable to assume he had lain undisturbed for over 100 years, and that he would be undisturbed for many, many more years. As I started looking into the matter I was surprised to find Shepton Mallet Prison had been bought by a property developer with plans to make the site into luxury flats. City & Country (C&C), bought Shepton along with several other prisons sold off by Ministry of Justice a few years ago. My timing, however, coincided with things stepping up a bit.
As things stand, I am waiting to hear back from C&C and/or the archaeologists – Cotswold Archaeology, on what will happen to Harry and the other six prisoners who are buried there. Other local issues apply which are halting C&C’s progress but I believe discovering real evidence that prisoner’s bodies are still likely to be there (see Cotswold’s Report HERE) will have put a spanner in the works where C&C have legal obligations not to erect buildings over human remains.
The Cotswold Report only names and dates burials of two prisoners – ‘William Bignal on 24th February 1925 and John Lincoln on 2nd March 1926’. That does not mean Harry and others are proven as having been removed, or developed over in one of the previous gaol developments when consideration for human remains was less regulated.
Harry and the others are, I believe, still likely be there. I hope however, because they were buried over 100 years ago, that they are not effectively written off as collateral damage! Taking a look at the 1922 Home Office diagram we can see that it would be hard not to disturb the other graves where they are in such close proximity to each other.
The legal obligations were in place anyway but I think the developers would have been surprised to hear from someone called Dainton asking questions about what their plans were at such a critical time. In fact, it was only when I asked certain questions by way of using a Freedom of Information (FOI) request addressed to Ministry of Justice that I was able to get a response confirming C&C would have been aware of bodies needing their consideration. Up until that point I was being answered along the lines of with “if we find any bodies”.
The FOI response did helpfully provide the 1922 map and list of exactly where the individual prisoners potentially lay (see above photos) which they stated was provided in the tender pack to all bidders. I am afraid C&Cs’ being somewhat circumspect about answering my initial enquiries does nothing to help me feel confident they are affording the bodies the priority they deserve.
I hope I am proved wrong but I am aware C&C have been criticised in other quarters for their handling of other projects. Dorchester Prison has had longstanding issues surrounding the treatment of its own prisoner burials.
Going back to the case of Harry and Hannah, when I had been looking up references to get information before searching in earnest, there were a couple of things that struck me and sent warning signals. Did Harry or Hannah possibly have Huntington’s disease (HD)?
In Harry’s evidence he said Hannah had ‘threatened to do away with herself’. In other evidence he accounted for having wet clothes as having tried to commit suicide ‘he had jumped into the river as he had wanted to do away with himself’. This had been picked up on in websites briefly mentioning the story. With suicide being so prevalent in cases of HD it did make me wonder.
Add to that the case I have been following known as ABC V St George’s, where a husband who had undiagnosed HD killed his wife, I wanted to see if there were any signs that HD could have been at play in Harry and Hannah’s sad tale.
After satisfying myself as far as I could HD was very unlikely to have been a factor in their story, this being based on the information I had including the trial evidence and newspaper reports from before; during; and after the trial (and trust me on this, I have scrutinised hundreds of on-line reports looking for clues), I made more of an effort to make contact with living relatives to highlight the sale of Shepton. I also needed to satisfy myself Steve’s own Dainton branch blood-line was far removed from Harry’s. Bad enough being told of/reminded there was a murderer in the family, let alone there could have been a genetic hiccup like HD involved.
With the help of other Daintons who have also been looking into the genealogy of the couple’s bloodline, I was able to trace descendants of one of Harry’s brothers. Harry and Hannah did have several children who were made orphans.
One of the children was blind. Elizabeth’s story hit me quite hard where in other family site references it had been assumed she was well looked after in a school for the blind. During my on-line newspaper searches, I uncovered she was only able to stay there a short while and was sent to the Workhouse. On further investigation, she died in the Bath Union Workhouse within three years of being made an orphan. God knows what sort of existence she must have had bless her.
Many of the others were sent to Canada from Dr Barnardo’s under what is referred to as British Home Children. It has therefore been more complicated trying to trace existing linear family. Initially I was trying to find relatives who might want to help support the need for Harry’s remains to be respected by C&C etc. More weight would obviously apply if living blood relatives took an interest.
The tracing of relatives also, again spookily, coincided with another area of my taking up Harry and Hannah’s story. By chance, I saw an advert in a TV magazine saying Chalkboard Television Production Company was looking for historic crimes where there may have been a miscarriage of justice. More details on the BBC Programme Murder, Mystery and My Family can be seen HERE. If taking forward stories, Chalkboard do need to make efforts to find living relatives/descendants and my efforts thus far would help.
From what I had read of the case, I thought there could be consideration given to whether Harry was wrongly hung. I would need to do a whole blog on what leads me to that conclusion but several areas worried me. Not least, even if Harry were proven to have been involved, should he have been found guilty of manslaughter as opposed to murder which carried a lesser sentence and not the death penalty?
Chalkboard have spent months looking for more evidence to help research the case further but have been hampered by the lack of existing documentation given we are talking over 100 years ago. The story cannot therefore be taken forward at this stage but they do feel it is an interesting case. They have said they will get back to me should anything come to light which might raise a strong legal argument either for or against Harry’s conviction being unsafe. The programme makers are always keen to ensure those taking part bear in mind that what they uncover can lead to more evidence against innocence than for.
Harry never confessed to the crime but, given the circumstantial evidence, it is hard to see that he would not have been involved in some way even if it were unintentional death. Maybe he went too far in trying to teach Hannah a lesson where at the end of his tether? Several times on the day of the drowning Harry would say to people comments along the lines of “If I keep In the same mind as I am now she shant walk about as she is now”. Harry’s actions on the day, and his bizarre actions in trying to cover his tracks afterwards, did not help his case either.
I should point out Harry had a record of being a violent man. He had only been out of gaol a few days prior to the drowning having served seven days for a previous assault on Hannah, and on condition of being bound over to keep the peace for three months. That said, Hannah herself was no saint and had been in brushes with the law for assault.
Alcohol consumption, on both sides, clearly played a part in their turbulent marriage. Harry wrote letters in his last days pleading with his siblings to ‘give up the drink’. The Temperance Society even used Harry and Hannah’s story as an example to further their cause of the evils of alcohol. Apart from making peace with his family, in his last days Harry showed signs of remorse. It was taken as a form of confession when he was reported to have told the Prison Chaplain ‘he admitted the justice of his sentence and he would confess all he had to God himself, and not to anybody on earth.’
It is shocking how quickly things moved on from the time of the drowning to the execution. The drowning took place on Tuesday 8th September 1891. Harry’s sentence was given at the trial heard before the Assizes on Tuesday 24th November 1891. Prior to that there had been a Coroner’s Inquest which took place Friday 11th and Monday 14th September; followed by a City Police Court hearing on 17th and 18th September.
Although Harry was called to give evidence previously, from what I gather Harry was not called to give evidence before the Assizes on November 24th. Certainly there are no references to the ‘Prisoner’ giving evidence in the Judge’s (Justice Sir Lewis William Cave’s) own Court Notes apart from one line on page 24 of 26 pages ‘Prisoner’s Statement put in’. It is not clear if that was a submission from Harry or his Defence Barrister.
The Jury took just twelve minutes to find Harry guilty!
According to the Shepton Mallet Journal dated 27th November 1891, Harry made no answer when the Clerk of the Assize informed him that he stood convicted of the crime of murder, and asked him if he had anything to say why judgement of death should not be passed upon him according to law? The article then goes on to say that after the Judge placed on the black cap, and proceeded to pass the death sentence, only then did Harry respond. ‘The prisoner when being taken away by the warders, turned round to the Judge, and said: I didn’t do it. I was at the bottom of Westgate Street when the clock struck half-past ten.’ The Judge replied with ‘It is no good adding this falsehood to your crime.’
I don’t think the Jury actually thought the sentence of hanging would be carried through. In fact, as the Judge’s notes confirms, the Jury asked for a ‘recommendation to mercy on the ground of the aggravating conduct of his wife.’
Several petitions were sent to the then Home Secretary – Sir Henry Matthews – to plea for mercy. The Sheriff of Somerset, who had sat through the trial, even travelled to London to request an audience with the Home Secretary to ask for the sentence to be commuted. All was to no avail. On Tuesday 15th December 1891, just ninety nine days after Hannah’s life was cut short, Harry was taken to the gallows and executed. Harry is said to have expressed that he hoped to be reunited with Hannah in Heaven.
Whatever the circumstances and facts of the case, I am glad that we no longer subscribe to capital punishment. In my work as a Mental Health Tribunal Clerk I sometimes sit in on hearings for ‘Restricted‘ patients. Some of those patients may well have been sentenced to capital punishment if still in force and their mental illness not uncovered in time.
Who knows what would have happened to the Patient in ABC vs St George’s had such swift ‘justice’ been dished out? And who knows if Harry himself was suffering from an undiagnosed mental illness that would have, I’d like to think, been picked up on in this day and age?
Having established HD was unlikely to have filtered through to Steve from Harry or Hannah’s gene pool, I started tracing back along Steve’s own blood line. I could be totally wrong here but I think HD may have entered via his Great, Great Grandmother who was not a Dainton by birth but, like me, had married into the family. She died in 1892 aged 56.
The death certificate gives the cause of death as Phthisis Chronic and Acute Bronchitis. The Medical Definition of phthisis is ‘ a progressively wasting or consumptive condition.’ Steve’s Great, Great Grandfather lived to be 86 which probably would have been too good an age to die with HD in those days. Many of their children died relatively young, including Steve’s Great Grandfather.
George Huntington, whom the disease is named after, identified a form of genetic illness in his 1872 paper ‘On Chorea’. It would take many, many years for HD to get to the stage of being a disease recognisable through symptoms. Some, myself included, would say we are still not there yet.
Since my last blog I have been a tad busy and there is still so much more to look into. I am still here with Steve’s ashes and his subtle and not so subtle ways of guiding me to things. Who knows what else may be uncovered?
I said at the beginning of this blog (apologies for the length but you know me by now) that I couldn’t recall exactly when I heard mention of a murder and murderer in the Dainton family. Thinking about it more, and looking at Steve’s own direct linear, I probably heard in a roundabout way on 21st August 1987. That was the date I went out with Steve on our first proper evening ‘date’ and he mentioned his father had Huntington’s. A disease such as HD had murdered generations of his family with no mercy. I witnessed Steve’s bravery even up until his final moments. I can certainly say Steve was innocent. He did nothing to deserve the death sentence that HD can bring.
I hope that Harry got to be reunited in Heaven with Hannah. For all his faults I am convinced that Hannah would not have wanted Harry’s life to end on the gallows. If not in Heaven, maybe helping to get Harry reburied on consecrated ground if possible is part of helping him on his journey back to Hannah.
In my Will I have instructed that my own ashes be laid to rest next to Steve’s. We had Eltham Cemetery stipulated. Now though I rather fancy the idea of looking into going somewhere like this – Eden Valley Woodland Burial Ground. Resting under bluebells seems rather attractive.
Steve does already have a memorial tree by way of a sapling I sponsored in Hundred Acre Wood planted through Woodland Friends. It is planted in a lovely peaceful place and I went to see the the sapling not long after planting. I don’t think they have branched out yet (excuse the pun) into the woodland burial sector.
Thirty years ago today I had no idea getting married to Steve would take me on such an amazing journey. Whether I live another thirty days or thirty years who knows what next strange path I will be walking through. Or what I may be treading over.
I shall end with a new poem, along with a photo taken thirty years ago.
The family tree of you and me stops dead upon the chart;
No roots extending further down where children take no part.
We both decided long ago our genes be not extended;
And so it is when I am gone our family will be ended.
But maybe one day years from now a child will stop to view,
A wooded bloom of bluebells that emerged from me and you.
Not rotting leaves and detritus in shaded canopy,
But sun and flowers and rainbow showers which wash you more to me.
Happy Pearl Anniversary Sweetheart. xxxxx
Today (14th May 2018) would have been Steve’s 57th birthday. As ever, I have come in to mark the day with a new blog entry and poem.
My previous birthday blogs can be seen here:
May 2011 – I MAY REGRET THIS…
May 2012 – TOASTING & BOASTING
May 2013 – ONE DOSE OF TWEETMENT OR TWO?
May 2014 – THE SHOW MUST GO ON
May 2015 – THE FAIRNESS OF AWARENESS
May 2016 – POETRY IN EMOTION
Twenty years ago today, Steve and I were celebrating his 37th birthday on-board The Oriana Cruise Ship. We were actually docked in Barcelona on his birthday and we had spent the day with fellow passengers on a shore excursion. We visited the Town Centre taking in the sites such as Gaudi’s Cathedral and Spanish village. That evening at dinner, as they do on cruises, the restaurant made a fuss of all those with birthdays. It was a fabulous day and night!
Barcelona was the mid-trip stop. The cruise had already taken us to St Tropez. After Barcelona we arrived in Florence. We had seen many pictures of the buildings in Florence but none of them had prepared us for just how stunningly beautiful the architecture was in real life.
Unlike in London, where pollution takes its toll on many historic buildings, strict transport bans in the Centre of Florence meant the beautiful coloured marble of buildings like The Duomo Cathedral and the magnificent bronze relief doors of The Baptistery were truly a sight to behold!
After an all too brief tour of Florence, our party took a coach ride to Pisa. We didn’t actually have time to get off the coach and walk around Pisa itself. Photos of the famous Leaning Tower were taken through the coach window, so sadly we didn’t get to do the obligatory photo of one of us trying to lean too so as to make it look straight. We had been delayed leaving Florence and were now in a rush to catch a plane back to London.
At the start of our holiday we had arrived to board The Oriana in style. From London Victoria Station we took The Orient Express to Southampton enjoying a champagne lunch. As part of the package, we would be returning home in even more style. Aboard Concorde no less!
I booked a car and driver to pick us up from Heathrow and take us back to Erith. I couldn’t bear the thought of all that luxury being undone by the usual challenges of travelling on public transport. Feel free to call me a snob.
With the Huntington’s disease (HD) sword of Damocles hanging over Steve’s head, we had decided very early on that we were going to make the most of every day. Given late thirties/early forties as being the typical age for starting to develop HD symptoms, we planned packing in as much as possible before hitting forty.
Both Steve and I were very saddened when Concorde was taken out of service in 2003. We were so very grateful that we got the chance to fly on her. As I have said in previous blogs, so many people put off stuff until tomorrow. For some, tomorrow never comes.
Forward supersonic fast to 22 November 2017. I was sitting at my computer with my morning cuppa and logged on to the BBC News Website. Among the story links on screen there was one on Concorde. Forty years ago, on 22 November 1977, Concorde made her first commercial flight between London and New York. The linked article was entitled – Concorde stories: Remembering the ‘pocket rocket’. The link to the article is HERE.
I clicked on the link and started reading. I scrolled down the screen enjoying the shared experiences. Then, to my utter amazement, I saw it actually included an anecdote I had shared on another website a long while back. Mine and Steve’s anecdote had been chosen to be used within the BBC article under the heading ‘The memories are precious’.
It was a wonderful surprise! It was just by chance that I found it where not working that morning and having time to browse. An early anniversary present from Steve no doubt.
I am sure you have guessed by now that the above covered ‘Supersonic flights’. So what of the ‘Human Rights’ reference in the blog title?
In my previous blog I mentioned getting a name check in the House of Commons (HC). No, I have not been involved in chaining myself to the railings of HC. Nor have I been pulled up for allowing Pinky Sybil to use a lamppost opposite. Check out my #SybilOnTour #LondonUnderground video HERE if you have not already seen it and know where I am coming from.
The background to the HC mention is this…
Back in January, January 3rd to be precise, I logged onto Twitter for a nosey at what’s occurring and was surprised to see a tweet from Scottish Huntington’s Association (SHA) stating this
We have succeeded in getting a Westminster Parliamentary debate around Huntington’s disease and #geneticdiscrimination on Monday January 8. Please lobby your local MP to take part and end this practice. Find out more:
The subject matter focused on being able to purchase insurance and life cover when it comes to families with a genetic link to HD. The discrimination was not news to me. Back in 2011, when compiling my book, I featured my poem ‘The Insurance Salesman’. You can read the full poem below. With many stories of families being penalised, I was angry the government had allowed HD to be singled out as a named disease for discrimination when it came to insurance.
The Insurance Salesman
In October 2000, Britain became the first nation to approve the commercial use of gene technology to allow insurers to refuse insurance cover; or to push up premiums for those born with genes that could lead to fatal conditions. HD was singled out as the only case allowed immediate discrimination because of the reliability of the test. This meant for a person having tested positive, insurers gained the right in certain circumstances to refuse to insure, or to legally load the premium to extortionate levels (300% has been cited).
So let’s take a hypothetical scenario…
Let’s say a person took the test at eighteen and tested positive. There are no signs of HD but he wanted to know if he had the gene. At twenty, he applies for cover but has to declare a positive gene result and the cost of the insurance cover reflects this. At the same time his twenty year old neighbour has also applied for cover but he does not have any record of HD in the family. That’s not to say he has no links to HD or any other potentially fatal disease, he just doesn’t know about it yet. His policy costs 100% less.
The HD+ person pays the loaded cover pricing from day one but, where HD is not an exact science, he does not become symptomatic until in his sixties (known as ‘Late Onset’). In those forty years, before symptoms appear, the person has led a HD free and health conscious life whereas his neighbour has not, and needs to draw on the cover much earlier.
It occurs to me there seems to have been no consideration of the fact that until symptoms start showing and presenting a problem, the person with the HD gene may have the gene but does not have HD itself! It’s no wonder this discrimination drives some people to delay testing where they feel it may compromise their right to be treated fairly being refused mortgage cover etc.
Please note: As at time of writing this (March 2011) The Association of British Insurers (ABI) has a Code of Conduct stipulating rules which all its Members are obliged to follow. The Code sets out clear guidance where the use of genetic information may be used in calculating cover requirements. No Insurer can request an applicant take a genetic test for consideration of insurance. Set levels of values of policies dictate whether test results can be used in the assessment.
The HDA have prepared a Fact Sheet ‘Advice on Life Assurance, Pensions, Mortgages etc.’ which is available direct from the HDA or accessed through their website.
He’s looking at the paperwork;
He’s thinking of commission.
He’ll reach his bonus target soon,
Just one more sale he’s missing.
And this signed piece of paper,
Will take him to his score.
Be home in time for dinner;
So glad he chose this door.
But hold on, wait a minute;
What’s she put on that bit?
‘Genetic testing… Huntington’s’,
He nearly has a fit!
He grabs the piece of paper;
Ignores her look so sad.
She thinks that we’ll insure her life?
The woman must be mad!
The MP taking the debate forward was Gavin Newlands. I approached his office and through exchanges with his staff by e-mail and phone I was able to highlight various elements of HD discrimination. My examples and links to examples were gratefully received.
My input must have made an impression as, in the course of his speech, Gavin mentioned me personally and referred to Steve which I was touched by.
The SHA believes that the business model that many insurance companies use to calculate risk is limited and does not collect all the genetic information available to calculate more precisely an individual’s health conditions. In other words, if we must use genetics, let us use them properly. This point is reinforced by an email that I received from Trish Dainton, whose husband sadly passed away from Huntington’s. She highlighted the unfairness of a system that can increase an individual’s premiums to ridiculously high levels on the assumption that they might have the HD gene but might not start developing the symptoms for 40-plus years.
As luck would have it, a Cabinet re-shuffle was made very shortly after the 8 January debate. When I say very shortly, I mean the very next day. My heart sunk when the Minister with ears for the matter and potential power to make change, (Stephen Barclay) would now have no further direct involvement. At least Stephen was moving to Department of Health and Social Care so the plight of those with HD would at least still be fresh in his mind.
In the shuffle, the Economic Secretary to the Treasury and City role was dealt to John Glen. Whether down to lobbying by SHA, or down to John being committed to pick up the baton from Stephen and and run with it, it was a relief to hear John kept his colleague’s promise to meet again with SHA etc. The meeting took place just a few weeks later, on 21st February. See HERE for a press article on the meeting.
In the intro of my poem I highlighted this point:
No consideration of the fact that until symptoms start showing and presenting a problem, the person with the HD gene may have the gene but does not have HD itself! Another side of that also applies. Just because HD is in the genetic makeup of the person, that doesn’t mean they would not need cover against other health conditions. As things stand, it appears companies are blinkered and using HD as an excuse to deny offering a full and fair choice of policies. John Eden, Chief Executive of SHA, wrote a marvellous piece on the issues. His article ‘Until the Penny Drops’ can be read HERE.
Surely it is a HUMAN RIGHT to be given the same options as any other person? Maybe a Human Right’s Lawyer will take it on one day. In the meantime; to the Insurance sector I would like to say:
PEOPLE WITH HD DESERVE UNDERWRITING, NOT WRITING OFF!
Here’s hoping the work done by the SHA and others now moves forward at a supersonic pace, rather than a snail’s pace as it has done in the past. One of the new jet boosters must surely be the Pandora’s Box of genetic testing for other conditions. I have a feeling it will be the start of something big.
As for other news…
I have not done much about finding Steve’s CAG count so that’s still on my list of things to complete. Everything seems to have gone quiet on ABC Vs St Georges. I dare say it will make the news headlines again at some stage.
Being a Gemini, I have another project on the go which is taking up a lot of my time at the moment. I am looking into the very interesting story of Henry (Harry) Dainton. Harry was hung at Shepton Mallet for the murder of his wife in 1891.
For quite a few years now I have been thinking about delving into the story. This year, I thought I would finally do more research. Readers of my blog will know I often refer to being drawn to things and there turning out to be a spooky serendipity element. This compulsion has turned out to be spooky too. You can get a taster in Claire Sully’s Blog entry UNCOVERING SHEPTON MALLET PRISON RAISES MORE QUESTIONS. To be continued in my next blog.
For now though…
I am going to end on a new poem and some snapshots from our May 1998 trip – Steve on Orient Express looking wonderfully smug; Steve posing in St Tropez and Steve getting ready to board Concorde. I was tempted to add loads more snaps but you get the picture (literally) At the very end there is a link to another Queen track. I am sure you can guess which one it might be.
Twenty years ago my love, we were living the dream.
Strangers looking on with envy; not all it would seem.
Spoilt, with more money than sense, I’m sure that’s what they thought.
Even friends and family, into that myth they bought.
We were buying memories; investing in the past.
A time to store experience; each trip could be our last.
I’m glad I caught your travel bug and shared such times with you.
It’s fair to say the bug was cured the day your life was through.
There’s nowhere now I’d rather be; no bucket list to write.
I’ve done all that I dreamed about; not least a Concorde flight!
How many people out there get to do what we could do?
The nightmares of HD were there, but still good dreams came true.
QUEEN – ‘DON’T STOP ME NOW’
Yes, we made a Supersonic Man out of You!
Happy Birthday Sweetheart! XXX
Today (27th January 2018) is Steve’s 7th Angelversary so I have come in to post up a new blog entry and poem in remembrance.
My previous Angelversary blogs and poems can be seen here:
2012 MOVING PICTURES
2013 RING A RING O’ ROSES
In the seven years since Steve hooked up to his angel wings there has been a lot of progress in the field of medical and biological science.
Like a lot of the Huntington’s disease (HD) Community I have been very sceptical when hearing news reports heralding a breakthrough. On December 11th 2017 however, just 17 days after I posted my last blog – REGISTRATIONS & MISCOMMUNICATIONS , there was an announcement that was hailed as ‘the biggest breakthrough in neurodegenerative diseases for 50 years.’ One of the scientists at the forefront of the research is Dr Sarah Tabrizi who I mentioned in my last blog.
A couple of the media articles are given below:
The story headlined a number of news channels and newspapers on 11th December but I was struck by the difference in numbers when the prevalence of HD was being quoted. Just looking at the text of the articles linked above we see:
The BBC state ‘About 8,500 people in the UK have Huntington’s and a further 25,000 will develop it when they are older’ . I picked up on the words ‘will develop it‘. By saying ‘will’ it suggests the 25,000 have already been tested and have proved positive for the gene. That seemed very odd as that would suggest a potential explosion of cases down the line.
Whereas, The Guardian state ‘About 10,000 people in the UK have the condition and about 25,000 are at risk.’ I was more inclined to think ‘at risk‘ was a more realistic representation.
I sought clarification from the Huntington’s Disease Association and they replied
We are quoting around 8,500 people who have the HD+ gene. Estimates from around the world suggest that there are about 3 times as many people at risk of having the gene. So it matches that around 25,000 people in the UK are at risk.
The Guardian will be relating to new mutations which will include Intermediate Alleles.
Since the Ionis announcement, we have seen a large referral rate and so have genetics depts and research sites. The HDA doesn’t know everyone who has HD in the family but we are currently working with around 5,000 people who are diagnosed with the adult form, 103 with JHD, almost 6,000 who are at risk and almost 4,000 carers. These figures are set to rise because of the HTT lowering trials.
I hope that helps to give some understanding of the figures but they are very fluid and variable.
Going back to the trial itself, it is worth noting that the new research does not herald a cure. Certainly, it is not announcing an instant cure or available treatment. We are talking the success of a very small trial involving 46 people.
In the trial, evidence was found to suggest a drug injected via a lumbar puncture procedure, affected the mutant huntingtin protein level. More importantly in drug trial terms, it seemed to show the drug was safe and well tolerated. I’ll leave it to HDBuzz to explain the science bit.
The fanfare was loud. Realistically though it is a long way off from being an automatic route within the HD treatment pathway if indeed it ever comes to being a signed off and available treatment.
Much more testing and monitoring needs to take place and only certain categories of HD patients would be suitable for next-stage trials etc. Again, it’s best that I leave it to HDBuzz to provide more detail by way of a very interesting yet very sobering ‘Ask the expert’/Questions and Answers (Q&A) report.
Whatever way you look at things, it is a very big leap forward considering so many have been treading water before now. I am, of course, very happy for those with HD or at risk who can at last see a little glint of light at the end of a very long tunnel. I would be lying though if I didn’t admit it hurts that the progress was too late for Steve.
Would I have been more excited had Steve still been alive and with me now? Unless he was still pre-symptomatic, or we had children and grandchildren at risk, I have to say the answer to that would have been “no”. That is not just based on the reality check that the HDBuzz Q&A report provides. It is based more on knowing Steve.
Back in 2008/early 2009 I had been reading about a drug called Memantine which some HD patients in the United States had been taking. The drug was actually approved for use by patients with Alzhiemers. As such, it was not normally available to people with HD and I was aware the UK seemed to be way behind in offering non-HD targeted drugs to patients.
I was not only reading the stuff you get by way of a generic sweep of the internet. I was reading the first-hand input from people on an American HD Message Board. Real people coping with HD at a post-symptomatic stage and it looked like the drug did seem to be having a positive affect from what I was reading.
Steve was due to have a check up with his Neurologist at King’s College Hospital (Movement disorders unit) in May 2009. I took the opportunity to take in print-outs on Memantine, including copies of the Message Board posts, to ask the Neurologist’s views on whether it was something worth looking into? He agreed to look at the papers and let me know his views.
I confess I was getting pretty desperate by then. In the space of a few months Steve had gone from walking, albeit unsteady and with a gait, to being totally wheelchair dependant. It was clear he was going downhill fast and I was keen to do something to halt the progression and try to wrestle back control by doing something; ANYTHING!
A few months later I sat down with Steve and spoke to him about Memantine to ask whether or not he would actually be willing to try it if the Neurologist were to say it could be prescribed? We had not had any feedback yet either direct from King’s, or by way of a patient copy letter where Steve’s doctor would be getting details of what happened when seen at the last hospital appointment.
I was keen to respect Steve’s wishes and I didn’t want him to feel any pressure/ambushed if the go ahead to prescribe was given at the next HD Clinic. I needed to explain it might not help anyway even if we did get the go ahead to use it, but maybe it would be worth a try just in case it could help him a little? I also needed to explain as far as possible the risks where it was untested for use on people with HD. No one knew if it could have negative side-effects making life even more difficult.
After explaining to Steve as best I could, I typed out and printed a sheet of paper which I placed in front of him and gave him a thick black marker pen. The note is shown below along with Steve’s response. You can just about make out a black splodge on the word ‘NO’. Steve was unable to write by then but he was able to hold a pen for a little while to make his mark bless him.
Looking at my typed note I see it is covered in liquid stains. That liquid was actually from a beaker of Guinness which I managed to spill in the bag I was holding papers in for the Clinic. Seeing stains would have made me annoyed at one stage.
The Guinness brings back vivid memories of how I would have to pack for every eventuality. Steve’s OCD around his time of needing his certain foodstuffs and drinks. I could relax more if we were held up waiting for hospital transport to get home if I had items with me just in case.
Now I smile with gratitude. Physical items which link directly back to time with Steve, be they pre or post HD symptomatic, are treasured. The Guinness stains simply remind me more vividly of our trips to hospitals and how I was able to do my best to anticipate what may be a challenge and plan accordingly. It is now evidence of a day with Steve, a tactile snap-shot in time.
In November 2009, we finally got sight of our copy of the Neurologist’s letter to the doctor.
Not a case of being lost in the post, just a very busy Neurologist. To the right is text extracted from the letter.
There we have it… The Neurologist had agreed to try Steve on a two month trial on the basis of ‘ there is probably not a lot to lose’.
Part of me was pleased the trial use of Memantine had been sanctioned but I was aware Steve had already been reluctant to try it so I would have to say “thanks but no thanks” after all.
I asked Steve again of course in the light of our now having formal sign-off. Steve’s answer was the same as before. Would it have made a difference and enhanced Steve’s quality or quantity of life? I can’t say but I am still glad that I took the idea to the experts, and more so that I took Steve’s wishes on board. Steve’s mental capacity was such that I still needed to give him credit for knowing his own mind on such an important issue.
Would I have opted for Memantine as a last resort if I were in his shoes? I think I would have said “yes” a while back based on the ‘not a lot to lose’ argument. However, I’m not so sure now.
In my previous blog I mentioned I would be seeing my doctor about my own health issues where being forced to change medication (meds). To cut a very long story short, after seeing the eye Specialist on 10th August I wanted to look into my osteoporosis meds to check they did not contain anything that could explain why my eye pressure is still abnormal.
Imagine my shock when the first webpage I clicked on showed this heading:
Osteoporosis drug strontium ranelate (Protelos) no longer available after August
The full article, which was posted in May 2017 by the National Osteoporosis Society (NOS), can be read HERE.
I immediately got in touch with my doctor and Pharmacy, who incidentally had just signed off a two month prescription two weeks before, and asked if they were aware of this? I also dug out a Memo from The National Institute for Health and Care Excellence (NICE). The Memo was supposedly sent to surgeries. It was clearly either not received or simply ignored as my news took everyone by surprise!
There is mention in the NOS article that safety concerns over cardiovascular risk was linked to low levels of prescribing. Interestingly the NICE Memo makes no mention of this.
Servier will cease production and distribution of strontium ranelate at the end of August 2017. This worldwide and strategic decision has been taken for commercial reasons due to the restricted indication/limited use of strontium ranelate, and the continuous decrease in the number of patients being treated with it
After the Pharmacy made further checks, I was able to get my doctor to agree to request my review with my Rheumatologist (originally due in mid 2018) be brought forward. I also insisted on a DEXA Scan so as to have a baseline to work from if not able to get anything in place for several months.
I got appointments for my scan and to see my Rheumatologist within a few weeks of my kicking up a stink. My Rheumatologist did not apologise for no one seeming to have got their acts together to tell patients. I was basically asked what I wanted to try instead.
The options on offer were a daily tablet – raloxafene (Evista) – or a monthly one – ibandronate (Bonviva). It was clear neither medication would be anywhere near as effective as Strontium. Indeed the results of my DEXA Scan had shown my overall bone density had increased by 1.5% for my spine reading and 7.5% for my hip on Strontium which was remarkable to say the least.
I had been on tablets like the ones on offer for years before Strontium was suggested. They had either been ineffective or I couldn’t tolerate the side-effects. I didn’t see the point in arguing so opted for the monthly tablet purely on a basis of less inconvenience.
There also followed a saga with my needing to challenge my prescription quantity. I may bore you another day with that saga as I am still not sure if it is resolved. Let’s just say it is along the lines of my poem ‘The Prescription’ if you have my book.
My experience with meds brings me back to the potential new HD drug/treatment story. Specifically two of the questions posed to Dr Ed Wild in his ‘Ask the expert’ session.
Will the treatment be cheap enough for everyone to have access to the treatment without restrictions because of costs to the NHS?
I understand that this trial has established the safety of the drug and an initial indication that it may be effective. Will the next stage look at persistence within the body to start looking at what sort of drug regime may be necessary? For example, a lumbar puncture once a year to inject the drug is probably acceptable, a weekly one probably not!
Their respective answers were:
It’s too early to have any clear idea about cost so I can only answer in general terms. Developing and testing new drugs, especially advanced therapies like HTTRx, is very expensive – but on the flip side, managing Huntington’s disease throughout its course is already very expensive in terms of care and lost revenue. It wouldn’t make any sense for a company to develop a drug that nobody can afford – that’s bad business. My amateur prediction is that we can expect a significant price tag followed by a negotiation between healthcare purchasers and NICE that leads to the drug being made available. We may need to work together to ensure it’s made clear to the decision-makers what the unmet need is in HD – but that’s a problem for when we know whether the drug actually works to slow progression.
Everyone involved wants to come up with a regime that’s effective but has the fewest possible number of lumbar punctures. I expect different options to be tested in future trials, but we don’t yet know what those options might be.
These are very good questions. They pose the potential issue of having an amazing treatment but the patient being denied access through lack of funding resources or availability. And, even if the money etc is available, is it reasonable to prescribe and administer if the effective/therapeutic dose can only be given via frequent lumbar punctures?
There is clearly a lot to be worked through before treatment can be signed off. We can only hope that if the drug does turn out to be THE greatest tool in fighting HD since sliced bread, there is not then a case of it being too expensive; too impractical; or too limited in terms of too small a HD targeted audience.
That audience is rapidly growing though. I understand HD organisations and research bodies are now seeing a sharp upturn in registrations as a result of the breakthrough announcement. It seems like people are finally coming forward and out of the HD closet. Something at last worth putting your head above the parapet now for no doubt.
If nothing else comes out of the announcement regarding the drug being rolled-out, people coming forward is the best way to get a better understanding of the disease in the here and now.
An understanding into its prevalence; the challenges facing those testing positive and even those testing negative; challenges faced by carers be they family or external carers. Future challenges to the NHS. Maybe this will lead to the NHS not thinking in terms of “can we afford this treatment? But more in terms of “can we afford not to make full use such a treatment?”
The potential for use in other neurodegenerative diseases is also enormous. Let’s hope this aspect helps to galvanise the potential wider audience beyond HD. The last thing the HD community need is to be told later down the line by the manufacturer is that they are pulling production on grounds of restricted indication/limited use. That would simply be too cruel!
I am aware of all the negativity this blog post is exuding. Perhaps I should swiftly move on to some better news.
We have a new recruit to the task force of HD awareness. Although nothing could ever fully fill the void that was left by Sybil when she went over the rainbow, Jackie Harrison and family decided a home is not a home without a Border Terrier.
Spike came to live with the Harrison’s a little while back. It looks like Sybil approved as a rainbow was in the sky when Jackie went to collect him.
As you can see from the photo he is already trying to recruit new families for Mini Sybils via @Jaq421. Please do think of re-homing a Mini Sybil and sending in photos and videos via social media. Spike, being a pup of the technology age, even has his own twitter account. Follow him @Spikeontour .
For my own part in raising awareness and fundraising, the HDA requested a snap of Steve and me plus a few words to use for a Christmas fundraiser.
They had set up a virtual Christmas Tree where people sponsored virtual decorations in memory of love ones lost to HD or currently battling it. The photo below is the one chosen and a link to the pinned tweet can be seen here.
Also, since I last posted, I have somehow managed to get one of my articles for another website onto a BBC News thread that commemorated Concorde; as well as getting a name check in the House of Commons! I will fill you in a bit more on the detail in my next blog. This one is already long enough as it is.
Before I close with a new poem for Steve, there is one more project that I have been involved with which has come to fruition.
Bringing proceedings back full circle to the reason for my coming in today, and wanting to remember Steve on his Angelversary, there is a new book out. Not a book by me but by the force of nature that is Ian Donaghy.
Ian wrote an award winning book a few years ago called Dear Dementia: The Laughter and the Tears. See Ian in action here on a Television interview as he spreads the word about the need for better understanding of dementia and better engagement by the public.
A couple of years ago Ian put out the feelers for doing a similar book covering the subject of grief. I sent in a few words and Ian included my entry under the heading ‘On the Beach’. I am just one of many contributors and each entry has been cleverly given a song title as a heading. Why ‘On the Beach’? You will just have to buy the book to find out.
The book was released in December and is called The Missing Peace: Creating a Life after Death. Contained within the 200 pages are anecdotes and stories of loss; love; life; hope; humanity; humility and even a touch of humour.
Each contributor has given their own take on grief or experience of it. Not just the loss of loved ones but of others who come and go in our lives. ‘Pets’ can be family and loved ones too and are also covered.
I would be very surprised to find anyone who couldn’t relate to at least one entry in the book, and who would not be helped by having their own experiences validated in some way. Reading that it is not just them alone who went through, or are perhaps going through, an experience they thought no one else could ever understand or identify with.
And so to end with another photo and a new poem for Steve. The photo was taken in 2005. Steve had cut his lip when shaving, such being the way of HD. He still has a beaming smile though!
Another announcement, another proclaim.
I turn up the volume, just more of the same?
This time it looks that the breakthrough is here,
And the media raves of a cure being near.
Drill down to the detail and whilst news is good,
There’s a lot to be noted; not misunderstood.
Patience is needed, much more to address,
But surge in engagement marks instant progress.
I glance at your casket, and give you a smile,
Too late for you, but it wasn’t your style.
You lived for the moment, you seized the day,
Looked up to the sunshine and kept making hay.
Happy 7th Angelversary Sweetheart. xx
Today ( 25 November 2017) marks 29 years since Steve and I walked into a room in Wandsworth Registry Office in South West London. And after a short but beautiful ceremony we both signed a piece of paper. A piece of paper that officially bound us as husband and wife.
Huntington’s disease (HD) was in that room that day in many shapes and forms. Not just in Steve’s father (seen in the background just behind us in the above photo), who was what I would call Middle Stage symptomatic. It was also in Steve waiting in the wings to make its appearance.
For a so-called ‘rare disease‘ I found out later, by way of the HDA Message Board , that The Registrar also had the faulty gene. I got talking to the daughter of The Registrar who mentioned her mother had worked at Wandsworth Registry Office around the time we wed. When we compared notes, she verified her mum’s signature was alongside ours on the Certificate! Was/is it also in Steve’s siblings who were present too? I hope not!
As usual by way of marking the day, I have come in to update the blog in memory of Steve and write a new poem.
My previous wedding anniversary blogs and poems can be seen here:
2012 SELF INDULGENCE
I mentioned in my blog of January 2017 that I had heard of the sad passing of one of Steve’s cousins. In September another of Steve’s cousins sadly died. He was only 44 and had also inherited the HD gene. It was his younger brother whom I had referred to in my January blog.
The funeral service was a fitting tribute for an avid fan of science fiction. From the Star Wars themed music and coffin (including a replica lightsaber placed on top complete with sound and strobing light) to the readings from books of favoured authors. This one I found particularly touching and uplifting:
“Everyone must leave something behind when he dies, my grandfather said. A child or a book or a painting or a house or a wall built or a pair of shoes made. Or a garden planted. Something your hand touched some way so your soul has somewhere to go when you die, and when people look at that tree or that flower you planted, you’re there.
It doesn’t matter what you do, he said, so long as you change something from the way it was before you touched it into something that’s like you after you take your hands away. The difference between the man who just cuts lawns and a real gardener is in the touching, he said. The lawn-cutter might just as well not have been there at all; the gardener will be there a lifetime.”
― Ray Bradbury,
Very beautiful and well chosen words indeed.
Developments since my last blog in May 2017 – ON THE WINGS OF AN EAGLE & DOVE; CARRIES FAITH, HOPE, & LOVE include:
THE PAPAL BLESSING
The Papal Blessing appears to have been a great success. They streamed the event on the day and I was pleasantly surprised at how much time The Pope took when going into the Audience and walking among the rows and rows of those invited. For some reason I had assumed it would be like you see on the television where he stands up on the balcony and addresses the masses below. Instead, it was a much more involved and personalised event. A short video giving highlights of the Event can be seen HERE.
As indicated in my last blog I was not intending to go to Rome for the Papal Blessing. However, I was thrilled to see a certain little dog (aka MiniSybil) was able to attend along with a fellow MiniSybil. They even made the BBC News! See HERE ‘Felt dog from Leeds has audience with Pope Francis’.
When Jackie and I first discussed to potential of getting MiniSybils world-wide using the #SybilOnTour branding, I don’t think either of us realised her and her team’s creations would capture the world in such an amazing way!
See HERE for a map of places where people have homed/taken MiniSybils and HERE for some of the photos sent in (including Celebrities). If you have been lucky enough to home a MiniSybil, please do send in a snap to let us know how they are doing. Contact us on Twitter via @TDainton and @jaq421 .
Sadly, there is another passing I need to raise at this point. That of Sybil herself. Jackie’s little Border Terrier who was/is the inspiration behind the design of MiniSybil.
Sybil will be missed by Jackie and her family immensely but lives on through all the joy she has brought them personally; as well as the HD Community who adopted her as a kind of mascot. We shall all miss her hats and costumes and antics stealing the show sometimes in Jackie’s home videos such as ‘The Singing Corner’ sessions.
DUTY TO WARN & OTHER LEGAL CASES
Shortly after posting my last blog the decision was announced. The full transcript of the judgement can be read HERE. In essence, it was found that there are grounds for the case to go to trial.
the Claimant’s case is arguable. I would allow the appeal, quash the Order striking out the claim, and remit the case for trial.
The legal profession is obviously taking as close interest in this case and there have been a number of blogs appraising the implications. One such blog is The GenomeEthics blog which can be read HERE
Therefore, it seems that the Court of Appeal took account of the existing evidence of professional opinion in determining what might be in the public interest in the question of whether it would be just, fair and reasonable to impose a duty to disclose. This seems to be part and parcel of the right approach to determining public interests. However, are the views of patients and the public also relevant to determining what is in the public interest here? If so, what are those views? Maybe it’s time we asked.
I am unable to get details of a date set for trial as yet. Will there even be a trial?
If I put my HD Community hat on I really hope it does progress to trial as there are a lot of issues and grey areas that need to be clarified; not just for patients and their families but for the medical and the social-care profession as a whole.
If I put my other hats on; having been a HD Carer and someone previously in management within a governmental office, I have to say I would be surprised if the Claimant and the Trust did not settle out of court if they can. This being so as to avoid the unwanted publicity and costs (for both parties even if legal aid applies) and the ethical Pandora’s box for the NHS and social care sector.
We shall see how far it gets…
Another case made the News in September involving a HD patient. This one concerned the matter of end of life care. The news report can be read HERE ‘Court ruling not needed to withdraw care, judge says’ For more in-depth details, the transcript of the judgement can be read HERE.
I still consider myself eternally grateful that I was able to keep Steve at home, and that he was able to communicate his wishes to me even at the very end. I have very mixed feelings about the above court ruling. My heart goes out to the family and it is so sad that they were put in the position of needing to go to court. It can’t have been easy either for the Treating Team.
It is becoming clear that HD is being recognised for the complex disease that it is. The laws and guidelines need to go way beyond what is already available. No doubt HD is helping pave the way for a shake up in the legal and medical system which will impact on many other diseases and medical conditions as well. By forcing questions about whether the status quo is fit for purpose.
On the last page of the 114 page Report, under Annex E – Case Reports, a HD case is used to illustrate checklists and templates are useful but cannot be interpreted as rigid. Something, no doubt, that every tribunal panel would like to think they applied anyway. Sometimes it’s not that simple though…
Of course, the case is being used to demonstrate a way of thinking which goes beyond applying to HD patients only. However, it was encouraging to see a HD case cited as a way to get people thinking again. Being in effect the closing statement and the last word as it were, it made me smile to see recognition is being given to how HD patients do not fit into simplified thinking. Just seeing the words Huntington’s disease in black and white on such a document prepared for the judicial system is fantastic awareness!
The below is extracted from the Report:
The patient was born in 1965. Like her mother and brother, she has Huntington’s disease. She was made subject to Guardianship under the Mental Health Act in 2013, and then the Court of Protection made a Standard Authorisation in 2015.
She lived in a specialist nursing home. The essence of the case was that Guardianship was no longer necessary in view of the Standard Authorisation. The Upper Tribunal found that the First-tier Tribunal had correctly recognised the importance of having the (Section 18) power to ensure that the patient returned to the nursing home if she left.
There would be practical difficulties in operating under the Mental Capacity Act 2005 to achieve this. Staff had to consider using their powers to ensure her return to the home without delay. The patient’s condition was also deteriorating and the tribunal properly referred to the crucial power under Guardianship to ensure treatment and provide access to the medical team. It was also submitted that the tribunal had failed to follow the guidance given in KD v A Borough Council and the Department of Health  UKUT 0251 (AAC).Here Charles J had set out a lengthy checklist of matters to consider in cases such as this.
Judge Jacobs in the Upper Tribunal accepted that KD was relevant, but said that it was important to recognise that the checklist was not legislation and should not be elevated to that status. As Charles J had himself said at paragraph 67 of KD, ‘it is likely to assist’. But the checklist must not be interpreted as a rigid template. Ultimately, every case is different and what matters is the substance of the tribunal’s reasoning rather than whether a tribunal’s reasons follow a particular format.
On the posthumous search for Steve’s medical notes/genetic data and his CAG Count I finally have the available records as requested back in January. The 40 working days service level agreement clearly too ambitious when the service was outsourced. I think I would have still been waiting had I not put in a strong complaint and got someone to take ownership of looking into things further.
Has getting the papers given me what I was looking for? One word, two letters, NO.
I have a plethora of letters and printouts of data on appointments; notes scribled by doctors; notes of my calling the Practice with queries; prescriptions; texts for Flu Jab reminders and copies of my letters to people (at least I now know they didn’t just throw them in the bin).
There are a number of references to ‘confirmed diagnosis’ but none that actually provide the CAG count. The nearest document is the letter sent by Sarah Tabrizi to our Doctor which can be seen below as redacted by me:
It is fair to point out, when requesting medical notes it is made clear the archives do not hold records which are the responsibility of individual hospitals to hold and maintain. By that token I was always aware I might need to directly approach the hospital where Steve’s blood was taken for testing and the Biomarkers Study. I was hoping that in the process of informing the doctor, more data would have been shared and the CAG reading included. Oh well…
The whole process of trying to get records has worn me down somewhat and I have decided to make the next step (approaching Professor Tabrizi’s hospital) something for my 2018 projects list. To be continued I dare say.
One thing I will be doing though before the end of this year is seeing my own doctor about my own health issues. I am having a forced change of medication but more about that in my next blog.
While there, I may ask my doctor to double check what they actually have on their records for me? I mention this in here as one of the things that struck me when looking through Steve’s records was the number of inaccuracies!
Steve’s main language being recorded as ‘Albanian’ for a while. I feel this is a mistake which is unacceptable in the case of someone with a proven HD diagnosis and increasing communication and cognitive difficulties.
There is no way in a million years that I or Steve would have told them this. We are talking in 2006 when I needed to attend with him to register after moving again. Therefore it looks like probable human error when adding data to the patient database. Or perhaps worse, laziness where the in-putter couldn’t be bothered to scroll past the ‘A’s option as far as ‘E’ for ‘English’.
I dread to think of how frustrating things would have been for Steve had I not been with him during appointments and treatments. Imagine my not being there and his treating team assuming his comprehension of language and use of words, when his cognitive and physical powers were compromised, could be down to English not being his first language!
When we moved again a few months later to where we finally ended up, fortunately it looks like the error was corrected as we had to re-register again. This time the right data was taken/inserted.
Such a pity no one ever thought to ask us during those last three registrations how come Steve would have gone from speaking English to Albanian overnight and then back to English? Does this suggest every re-registration involves staff having to type in all the information from scratch in the 21st Century? Qesharak!
As for my pet-hate of the use of ‘Huntington’s Chorea’ as opposed to ‘Huntington’s disease’, I was very disappointed seeing the use of the old name so often. As the above picture illustrates, chorea heads the record (E: Huntington’s chorea). The date of Jan 2004 instead of 2005 is also wrong.
Sure, HD was suspected by me in 2004 but we didn’t see a doctor until Jan 2005 about it. Therefore, technically, there was no visual diagnosis or proven diagnosis in Jan 2004. I am glad we didn’t have any insurance companies to deal with that s all I can say…
We are not just talking receptionists; doctors; and others who may not have come across the disease often if at all before. On occasion we are talking a Consultant Neurologist and members of his Team. Specialists in neurological disorders whom I would have liked to have thought were more enlightened.
I wrote a poem in my book – Curse in Verse and Much More Worse – to illustrate my passion for correcting the name. The poem was kindly read to video by Carol Royle and can be seen HERE. At the end I show the wording on Steve’s 2011 death certificate which states ‘Huntington’s Chorea’.
That name was not taken from me I hasten to add. The Registrar was very sympathetic to my frustration (she had once lived next door to a HD patient) but explained she was bound by law to enter the same wording/name as had been used on the paperwork provided by the doctor who had issued the confirmation of death for their purposes.
I hope, by now, more people in neurology and the supporting teams have been made aware of the nature of HD not just being a movement disorder. The change of name having been in place now for many years.
MY OWN AWARENESS EFFORTS
There is not really a lot to report by way of my being proactive and taking on awareness ideas. However, I was thrilled to be approached by the Scottish Huntington’s Association (SHA) a few months back and asked if I would be willing to submit something for their blog writing initiative ‘Shout Huntington’s Aloud’.
Going back into a blog I was writing at the time of being a full-time carer to Steve, I submitted a few entries and was thrilled to be featured as the inaugural ‘Guest Blogger’. My entry can be seen HERE.
I hope to work more with the SHA on future writing projects, and hopefully with the HDA too at some stage.
Also, in the last few weeks, the HDA announced a Christmas Campaign. The initiative invites people to light a bauble or star on a virtual Christmas tree for a small donation.
A special personalised dedication can be written and is displayed on a ‘tour’ around the tree. It makes very poignant reading and is a great visual representation of just how much, and how far, HD touches generations of people.
After making my own donation and dedication to Steve, the HDA asked me to help them in their social media push by providing a few words and a picture they could use. I submitted some wording and four snaps for them to choose from. As at time of writing this blog you can see the Campaign details HERE and HERE. I’m glad they chose the snap of me and Steve together enjoying life. As much as Christmas can be a sad time it is a time to reflect on happy times too.
Before I close this blog with a new poem, I just thought I would share another spooky event.
I tend to draft my blogs well in advance and update and add stuff along the way before the time comes to post. Several weeks ago I put in the opening snap of Steve signing the wedding certificate expecting it to be the only photograph available.
I was sad that I never found the one of me signing which I was sure had been taken by the wedding photographer. For the wedding album itself we chose only one signing snap. However, I was convinced I had not imagined I’d seen at least a proof version of me signing as well.
Over the years, before Steve died especially with so many moves of home etc, I have lost lots of items and photographs. Over the years, since Steve died, I have asked so many family members and friends to search for any photos they have of Steve or both of us to the point of being a nuisance!
On November 12th I met up with my sister at a cemetery to take flowers to dad. Remembrance Sunday and also it is the weekend before the 32nd anniversary of his death on November 15th.
My sister handed me an envelope containing some wedding proofs which had somehow come detached from the set I still have. She found them when looking for something else. She had been surprised to find them having thought she had given me everything by now, and I was convinced I had looked through everything when at her place over the six/nearly seven years since Steve passed!
You have probably guessed by now what was in amongst them. Yes, the snap I had been pining for even though only in my own mind as my sister was not aware I had been looking for it all these years. Or in particular for this blog entry where I was so sad I thought it was lost forever.
Make of that what you will but I’d like to think it was a posthumous anniversary present from Steve.
The photo is inserted after my poem. Thank you Sweetheart!
‘Everyone must leave something behind’ but as I look around,
No flowering plants; no works of craft; no hand-made items found.
I guess that as the years went by, where HD came to stay;
Items culled through every move meant loss along the way.
For one so gifted with your hands it’s sad there’s nothing left,
To show how you had made your mark. A home now so bereft.
But take another look around; with every single view,
The home is filled with items kept or here because of you.
The photos on the wall you took, or taken when together,
Prove that you existed then and will exist forever.
As for touching something else to help ‘your soul’ live through…
You touched my heart; my mind; my soul. I’m me because of you!
Tomorrow (May 14th 2017) marks Steve’s 56th birthday. That said, the birthdays after his 49th in 2010 have been in a different form of carbon and aura. As opposed to the flesh and blood (albeit blood with a dodgy chromosome), and sparkly eyed fabulously cheeky laugh format that is…
I haven’t yet been able to manage getting to his party in Heaven. We sang No one but You ( Only the good die young ) at Steve’s funeral rather than have a hymn. Based on that criterion, I guess I shall be around a lot longer. Therefore I still need to do a virtual celebration of Steve’s life and awesomeness right here on Planet Earth.
My previous entries to mark Steve’s birthdays since 2010 can be seen by clicking on the links below:
May 2011 – I MAY REGRET THIS…
May 2012 – TOASTING & BOASTING
May 2013 – ONE DOSE OF TWEETMENT OR TWO?
May 2014 – THE SHOW MUST GO ON
May 2015 – THE FAIRNESS OF AWARENESS
May 2016 – POETRY IN EMOTION
Huntington’s disease (HD) Awareness Week starts in earnest Monday May 15th. I toyed with the idea of travelling to Rome to take part in an amazing global HD awareness opportunity. His Holiness The Pope, no less, is giving a ‘Special audience’ with members of the HD Community and a public address/blessing.
More details of the event, which is being held on Thursday May 18th and known as HDennomore, can be seen HERE. One of the driving forces behind HDennomore has been the wonderful Charles Sabine who I had the pleasure of meeting in 2015. I blogged about our meeting at a film event HERE.
I say ‘toyed with the idea’. I have my shiny new passport as outlined in my previous blog but didn’t know about the event when I got it. Part of me was thinking maybe it was more than a coincidence? I also mentioned in that blog though that I have no intention of ever travelling again without Steve. Even Pope Francis can’t make up for Steve not being there by my side on such an occasion.
I visited Rome with Steve in 2004. Among the guided tours we took during our holiday was a trip to The Vatican. We had a really lovely holiday in Rome and it was good to get another of our Bucket List wishes ticked off. I couldn’t go back without Steve.
We both took our cameras and, as usual, Steve managed to take the best pictures even being HD symptomatic . There is a particularly special picture that Steve took at The Vatican. Everyone else is looking around at the architecture to take pictures. Steve has managed to not only capture the architecture but what looks like a single dove flying above the Square. Priceless!
I am not a religious person. I am certainly not expecting anyone blessed by The Pope to be instantly cured, if ever at all. It is, however, a fantastic way to get media attention for the disease and plight of those affected by it in whatever capacity.
There is a focus for the Event on families from South America. This is a region of the world known only too well by The Pope. They are among those who have the worst of the worst when it comes to help and healthcare. When we consider HD would be nowhere near as far down the line for treatment and cures had the families of Lake Maracaibo not allowed Nancy Wexler and her Team to find the HD gene it is only fair they be recognised for their role in the HD story. See HERE for more about the story.
What about my own meagre efforts? Since Steve’s last birthday blog I have not really done much by way of raising awareness myself unless you count:
Taking #SybilOnTour around every London Underground station and making a video slideshow of it. Click HERE to see the video and read more about the adventure in my blog – WARNING SIGNS & TUBE-TRAIN LINES.
Taking #SybilOnTour to The London Pantomime Horse Race (LPHR). The best way to describe LPHR is a crazy afternoon of eccentric people dressing up in panto horse costume as an excuse to do a pub crawl around Greenwich. The Race is done for charity and there’s a little video giving the flavour of LPHR HERE.
I have to stress neither Sybil or I actually competed, we were just spectators, but we did manage to get in a photo op for Sybil with the lovely Caroline Harbord
Caroline sings with the Lewisham and Greenwich Choir, AKA The NHS Choir. They were performing at LPHR and you may remember them as the act that pipped Justin Bieber to the UK Christmas Number 1 spot in 2015!
One of the other performers, who did a song with The NHS Choir, was a guy called Dr Milad Shadrooh. He is also known as The Singing Dentist. They did a brilliant parody of Pharrell Williams’ song Happy. Their version is appropriately called Gappy. See the video HERE.
Being me, I couldn’t resist having a go at writing a parody set of lyrics myself based on a dental theme. I re-wrote Enya’s Orinoco Flow and made it into Scale Away. My take on it can be seen/heard HERE. Apologies for the awful voice but in the absence of having a proper choir, or professional artist helping out, I am afraid it is just my squeals. Ideas for a Huntington’s disease Choir anybody?
As for developments since my last blog…
I had hoped to be able to give an update in here on my search for Steve’s CAG count ; and also report back the outcome of the Appeal under the Duty to Warn court case. As I post this blog entry on May 13th the position is as follows:
Regarding Duty to Warn/Duty of Care ( ABC v St Georges Healthcare NHS Trust and Others ) there is little to report. I did manage to get to the Royal Courts of Justice for a few hours on the 2nd day of the hearing. I was only there for one morning but I was glad I showed my face. I may be wrong but I did not see anyone from the HDA present which surprised me. I was able to offer my thanks to the Claimant for pursuing the matter as it was obviously not an easy thing to do. She seemed very touched and grateful that others cared.
From the brief time that I was there, it was very clear to me that such a complex case could not be decided simply on the basis of the information and ‘ trial bundles‘ that were being presented for consideration. There also, clearly, needed to be much more time than the 7.5 hours listed to do justice to the implications of what could be such a landmark case. In a Guest Blog on the GenomeEthics website, Dr Vicky Chico has blogged about the matter and sums up some of the issues arising. Read her blog post HERE.
As at time of posting this blog entry, the Case is still shown on Case Tracker as ‘waiting result of a reserved judgment’. In a nutshell, this means the decision is being held back while more evidence and opinions from others is being taken before an informed judgement can be made.
Personally, I think that status is reassuring. It seems to afford the Claimant and the subject matter more respect where it is so complex. There is still so little known about HD, including the ramifications of genetic information being made available or withheld for whatever reason or whatever hereditary disease. That became evident from the questions being asked by the judges who were seeking to clarify the weight of the arguments.
On the posthumous search for Steve’s medical notes/genetic data and his CAG Count…
I posted off my application for access to Steve’s medical records in January. The cheque I enclosed for the service was cashed by Capita on February 13th. Having sent a number of e-mails and getting no replies at all, and having made a number of calls, I was told recently that they are apparently at ‘Stage 2′ in the process. The call centre I need to deal with don’t actually know what Stage 2 even means but assure me something is happening and I will get papers “soon”.
At one stage they denied receiving my application, only to back-track when I pointed out they must have had it where they cashed the cheque in February! At that point they admitted they had lost track of it in the system!
Fortunately I am in a much less stressed state of being than I was when as a carer. It’s not like I need the details as a matter of urgency but that is not the point. It has brought back to mind and heart the feeling of utter frustration and helplessness arising from other peoples’ perceived incompetence along with lack of caring about the customer. I did a bit of searching on Capita. It does not surprise me they are getting bad press from handling the NHS Medical Records contract.
There were times when looking after Steve that I was coping with things where I had, in effect, control of the situation. When external control was making life harder for us, for example medical receptionists messing up appointments; the hospital transport system sending drivers to the wrong place and our losing appointments we had been waiting six long months for; staff being on leave and not sorting out cover properly meaning we would be short of medical supplies and services etc… Those were the times I just wanted to throw the towel in! Those were the times I would end up losing it! Those were the times I would feel helpless and hopeless and they obviously impacted on Steve.
It also brings back to me how lonely it felt being a carer to someone at late stage HD. Communication was still there in many ways but not at the level where Steve and I could engage in a conversation about things beyond my control. This was to the point where he could not see that I had done all I possibly could to help him/us and it was others who were to blame, not me. He relied on me and I would feel a complete failure more than a victim of other people not doing their bit properly. As a self-confessed control freak, such times could mentally tip me over the edge!
I use the word ‘incompetence’ above. It is a very strong word and I do always need to bear in mind that the people providing the services are often at the mercy of the ever changing computer systems they work with. Too many changes or too few changes? Even as I post this blog the NHS is in chaos where it has been under attack from a cyber threat. Thousands of people are impacted. It appears when the computers go down, the NHS cannot do even a simple task of taking appointments or handling routine operations.
Those computer systems are often not fit-for-purpose where no one has properly taken time to talk with/test with the people who actually need to use them – the End User. Even more unlikely is consultation with the Ultimate End User (the customer/patient/carer). They are the ones most impacted when the systems and people using them do not deliver the level of service which is needed. Will it ever change? Sadly I think things will get worse and worse to the point where it all implodes.
When we think of the human brain being the computer of our own bodies, it only takes a dodgy bit of programming and wiring as it were, and it is no wonder the mind and body can feel like giving in. In my book CURSE IN VERSE AND MUCH MORE WORSE I wrote a poem called The Corrupted Computer. The actor Mark Moraghan kindly did a reading for me which can be seen HERE.
I described my feelings of helplessness above when being frustrated by things beyond my control. My own frustrations and limitations were minuscule compared to what Steve was having to cope with.
Most of the poems in my book were written before Steve died. I am grateful I was able to use writing to record that I recognised how much harder things must have been for Steve than for me. This was even before I had time to reflect on things after Steve’s death which can put a whole new slant on things. It helps me better come to terms with my wife/friend/carer/advocate role whilst he was still alive, and when it really mattered.
So…What am I doing this year on Steve’s birthday?
I am staying at home as ever now but I am sure we will both be emotionally exhausted by the end of the day. That is, unless Steve can have a word with God and The Pope to ensure Crystal Palace get the breaks they deserve. I previously blogged about Steve’s love of Palace in my blog of August 2013 – PLAYING FOR LAUGHS. So proud that Palace had been promoted but so sad too that Steve had not lived to see them go up.
Palace (aka The EAGLES) are on telly and are playing Hull City (aka The TIGERS) in what could prove to be the most crucial match of the entire Season! Some call it a ‘six pointer’ but it’s much more important than that. If Palace do not win, or at least draw and get a point, they may still be relegated. Hull are their nearest rivals with only four points between them. With just this match, and one more left which happens to be away to Manchester United, it is crucial they don’t fall at the last hurdle!
In Roman terms, their Captain – Jason Puncheon – represents the Aquilifer. Leading the Team/Army and the legendary South London Army of fans into a fight for survival . Whilst Jason may not actually have an eagle standard to hold on to (and sadly he could do with a set of armour and helmet too given Wardy was given a broken nose last time out) he does have the blessing of a real live eagle! The beautiful Kayla who is the Team Mascot. The Referee will be Martin Atkinson. Just like the Emperor in Rome, at the gesture of a hand the Ref can condemn a Team in an instant. It doesn’t matter how well the Players play their fate is in his hands (and that of his optician)!
Then again…. If Palace do get relegated it will be the start of just another chapter of being a CPFC fan. I marvel at just how much Stress Steve was subjected to. The highs are euphoric and the lows are unbearable at times. Something I did not fully appreciate until now. The goals will be fought for in whatever Division played in, and they will all go towards helping the HDA in Steve’s memory via our fundraising page.
At the beginning of this blog I mentioned a Queen song was played at Steve’s funeral. There was always going to be at least one Queen song to remember him by. However, there was meant to be a Monty Python song playing for The Committal and our leaving the Chapel. Steve wanted Always look on the bright side of life. I bottled it when it came to requesting the music and asked for Pink Floyd’s Echoes instead.
Steve had a wonderful sense of humour. Coupled with his love of the film Life of Brian it was one of those songs we joked would be cool to have at our funerals. Having a sense of humour was paramount to stopping HD destroy him before he would become symptomatic, and to a greater degree for the years after it emerged.
What have the Romans ever done for us? They gave me and Steve a fabulous holiday and we loved seeing the ancient ruins of a great civilisation. I hope those who get to travel to Rome for the May 18th Event find it as special as we did. And that the day marks a historical shift in media attention to help HD emerge out of the shadows and be Hidden No More.
I am going to end with and a photo of Steve from our holiday and a poem for Steve. The photo was taken on August 17th 2004 at Ostia Antica. It was a very hot day. There was a lot of walking, not all of it on level ground, and we were being guided by a tour guide who had a heap to pack in during such a short time. I was flagging but Steve still managed to keep a smile on his lovely face.
Although not formally diagnosed until 2005, in 2004 it was clear to everyone that Steve was demonstrating the early signs of HD. Whether Steve is counted in on ‘everyone’ is debatable but he was beginning to get a gait which made walking harder and was dropping weight like a stone.
His patience; tolerance; stamina; tenacity; and utter determination not to be seen as someone with a health issue is extraordinary! HD was about to feed him to the lions and tigers. Having seen other family members fight for their lives in the HD arena, and none of them survive, he was as brave as any Roman Gladiator!
The photo is also very poignant to me as it was taken exactly 17 years to the day that Steve and I had been to a friend’s birthday drink. He flirted with me to the point that we started dating. And the rest, as they say, is history… Although, as long as I keep Steve’s memory alive he will never be ancient history.
Telly on, the match begins. A lot depends upon who wins.
Another Season nearing end; another goal-mouth to defend.
I get excited; hope we score, I wasn’t like this once before.
I’d be at home with things to do, content you had your own life too.
Years ago you would have gone; with fellow fans you’d sing along.
Come back later, scarf in hand, I didn’t really understand.
I’d smile, commiserate, pass beer, serve dinner; later disappear.
While sat at TV you would stay, and watch again ‘Match Of The Day’.
The next day you’d devour the news, and read up on the pundit’s views.
On holiday we’d have to find, a paper though one day behind.
Your passion for the game came through; it was indeed a part of you.
I’m glad I wasn’t one to moan, a football widow on my own.
Supporting you; your sheer frustration. Times you faced a relegation.
Times of joy when going up, so close to raising FA Cup!
Then later on with HD growing, things got too hard to keep on going.
You stayed at home and watched TV, with only me for company.
Come Saturday when footy came, we’d always strive to catch the game.
Whatever outcome, lose, win draw; you loved to cheer your Team once more.
Your Birthday this year marks a day, when so much rests on how they play.
I’ll sit and watch with glass in hand. I get it now, I understand.
Today (27th January 2017) marks six years since Steve took the opportunity to beat Huntington’s disease (HD) before giving it a chance to beat him/us.
Each year, to mark the day of Steve’s Angelversary, I like to come in post up an entry to remember Steve and reflect upon life as a HD widow. My previous Angelversary entries can be seen through the links below:
January 2012 – Moving Pictures
January 2013 – Ring a Ring o’ Roses
January 2014 – Inspiration not Frustration
January 2015 – Reaching for the Teaching
January 2016 – Coincidence or Sixth Sense?
Like many people, I like to think of a new year as an opportunity to consolidate things from past years and plan new things. For 2017, I thought I would try to get back into some of the little projects I have been thinking of doing but not got very far with. For example, trying to get hold of Steve’s CAG count to see if that had any relationship to Steve dying relatively young at 49. More details on what a CAG count is can be read HERE.
When Steve was tested in 2005 we were not given anything with a test result stated on it as such. We were simply told it was a ‘positive’ result. In HD terms, 49 is not unusually young. However, most of Steve’s HD affected relatives seem to have died at a much later stage in life. That said, I have just heard of a cousin who died at the end of last year. The cousin was only 40.
I did actually start looking into how to get access to Steve’s records in July last year and spoke to our GP Practice. They gave me a website to go to for guidance and an application form. See HERE. I came across a stumbling block though when it came to sending proof of my identity. My passport had expired; I have no driving license (I gave up after failing the test three times); and getting endorsement of photos can be such a pain where the rules on who can endorse, and who cannot endorse, are so restrictive.
With the New Year, I decided to say s#d the expense and the hassle. Even though I have no plans to ever travel again without Steve I might as well simply apply for a passport renewal. I had originally been thinking it would be cool to be an owner of a post-Brexit passport where my old one expired in May 2016. I have since given up waiting for the Powers That Be to get their acts together. Waiting two years is one thing, waiting for the calming of civil unrest and scaremongering about break up of the UK/a new Hadrian’s Wall is quite another.
A few days back I went on-line to see how I go about applying for a renewal. I was pleasantly surprised to find that the whole process can be done via the Gov.UK. website. With the advent of digital photos I was able to up-load my mug shot and not spend loads of money and several hours in one of those photo booths trying to get an acceptable photo. I’m not just being vain here. I have dodgy eyes (more details below). In the past I have paid for someone to take my photo in one of those places who offer passport services and still had it rejected when I went to the passport checking services at the Post Office!
Sure enough, even after selecting my photo after my having discarded lots of trial ones, the System didn’t like my up-load. At least with the on-line application method it allowed me to supply notes on why I felt I would never be able to provide a photo of a better quality for their purposes. Once submitted, I was informed an actual human being would be involved in checking. No more “Computer says NO”. A human would check my likeness against my old passport and take into account whether or not I had medical reasons for not looking like bright eyed homo sapiens should look.
I had worked on the basis we would probably be talking three months rather than the average three weeks stated on site. For once, the UK digital age has surpassed my expectations! I am now the owner of a new ten year passport which arrived Saturday (21st January). Saturday 14th I did the photo in the comfort of my own home with the aid of a self-timer on my digital camera and having magnolia walls which are allowed for the plain light background. I watch a lot of those home improvement programmes but cannot bear to change the place since Steve and me moved in to the ‘New Build’ ten years ago.
Monday 16th I sent my old passport by secure service to be checked and cancelled. That arrived back by secure (signed for) mail on Friday 20th. Saturday 21st my shiny new passport arrived by secure mail. One side of me thinks efficiency at its best, another part of me worries why such an important document does not need more time for scrutiny and other administration? No pleasing some people I suppose 😦
Now to get cracking on trying to get Steve’s CAG count. Watch this space as they say…
I mentioned above I have what I call dodgy eyes. As a child at around age six I had an operation for a ‘lazy eye’ or ‘squint’ as it was called in my day. It’s now known as ‘Astigmatism‘. Steve had a squint as a child too but his operation went much better than mine, although there were still subtle signs when he became tired bless him.
Apart from the operation not being fully successful (yep I had the patch and the glasses for several years) my eye problems were further compounded when I had brain surgery a few years later for a neavus/Neurocutaneous Melanocytosis (NCM) on my brain. I was about 12 at the time. The brain op was said to have further compounded my scoliosis and muscle weakness. Just call me unlucky.
I got on with life, as you do, and didn’t think much more about my eyes until one day back in 1995 on a shopping trip with Steve to Lakeside Shopping Centre. We ventured into the shiny new Boots Opticians, where they had a special promotion on offering comprehensive eye checks with new state-of-the-art equipment. I thought it would be worth a go and they saw me there and then.
The results were staggering! The comprehensive Field Test highlighted I had a complete loss of vision in parts of both eyes (top right quadrant in my right eye and top left quadrant in my left eye) which restricts my peripheral view by about a quarter in each eye. Further investigations with access to my childhood medical records showed this was picked up on after my brain operation but I had never been told about it.
I assume my parents may have known but they certainly never told me there was a good reason why I couldn’t see as much as others. Not that I was aware of the blind spots as it was just taken for granted I was seeing what others see. With hindsight though, it made sense of why I never did pass my driving test as I really could not see the parked cars properly lol. I have also been told that, now I am aware of the visual problems, getting insurance would be at a ridiculous premium if I ever did learn to drive!
More problems have been discovered with my eyes since that fateful day in 1995. I have since been diagnosed with Narrow Angle Glaucoma. As a result I had the Iridotomy treatment on both eyes (holes lasered into my eyes). The procedure was “only 75% successful” and at my last check up on 19th January this year it appears my corneas are thickening and the pressure rate is reaching the danger threshold, whereby I may need to use special eye drops in the future. When I go back in July they hope to have a better idea of whether I will need further treatment and/or procedures to stabilise pressure and stop possible vision loss.
Going back to the passport photo issues, apart from a squint and having limited peripheral vision with pupils that don’t dilate properly, I have been told that I have very small eyeballs! Both eyes staring straight ahead to pose for a perfect facial picture with central pupils; clear iris and a decent amount of the white of the eye just ain’t gonna happen!
Another thing on my list for 2017 is to get my butt into gear regarding being better at doing my daily physiotherapy exercises to strengthen my foot and aid my poor balance. Last year I was attending physiotherapy at Queen Elizabeth Hospital to help my unstable right ankle and, in turn, my right leg and my back. Without the intense therapy there was no way I could have completed my #SybilOnTour Tube Challenge so my Osteoporosis Specialist referring me for therapy was really timely.
Yep, I have bone and muscle issues on top of everything else. Once again I cry “Just call me unlucky!” Actually, the Physiotherapist suggested I look into asking my GP and other family members about the possibility of having Charcot-Marie-Tooth . The GP said she doubted it would apply and my sister said she didn’t know of any relatives with symptoms so we have put it on the back-burner. I’m banking on cancer getting me first anyway as that seems to be the predominant choice of hereditary disease in my family.
I mentioned #SybilOnTour Tube Challenge above. As an update from my last blog post Warning Signs & Tube Train Lines I have so far managed to raise £400 from that fundraiser. That’s a good amount but not quite the £1,000 I was aiming at so if anyone has any spare change all donations are still welcome HERE.
Also, another subject covered in my last blog post was the business of ‘Duty to Warn’. Tapping into the knowledge of a colleague I was able to find where on-line I could find the listing for the next hearing at the Royal Courts of Justice. It will be Tuesday 28th March – Case B3/2015/1816.
Members of the public can attend courts at the Royal Courts of Justice unless the Room is marked as ‘In Private’ or ‘In Camera’. I may try to go along just to satisfy my own interest (a bit of a busmans’ holiday lol) but I dare say the media will be following up anyway if there is anything of note to report where it could be a landmark legal ruling.
In this blog I have described above a lot of things wrong with me. Some were from my childhood and clearly evident from the moment Steve met me. Some discoveries were shared with Steve along the way. Finding out about ocular problems on a shopping trip in 1995 and finding out around 2002 that I have osteoporosis which could not have been easy for Steve to hear.
When Steve told me he had a father with HD there was no guarantee he would have inherited it. My intuition told me it was likely to be ‘positive’, but he could easily have been ‘negative’. Fifty percent chance of Steve needing me in later years; one hundred percent chance of me needing him to look after me if we lived long enough. Add to that all my personality faults and frailties, even before I took up the role as a carer and all that entails,
HD did affect Steve’s personality but there was always an underlying retention of his sweetness and kindness and tolerance. Whereas me… Cut me like a stick of rock and I have the word ‘Bitch’ running through me. God knows, I even branded myself for my 40th Birthday – see HERE. Like I say in that video ‘Steve was a Saint to put up with me!’.
Steve was my rock and protector and even carer well before I needed to be his. He chose to take me on despite my physical and emotional issues and when we married I was the one most likely to be in a wheelchair as time went on, not him. Despite that, he still wanted to be with me.
Six years on from watching Steve take his last breath, I still marvel at how utterly lovely he was/is as a human being and how lucky I was to have met him and be with him, in whatever form of earthly carbon or heavenly aura he may be. Just call me incredibly LUCKY!
I have inserted below a new poem for Steve and a photo of us taken in 1998 on a cruise. Steve is looking confidently forward at the camera but, as usual, I am trying to veer away from looking straight at the camera. This would annoy professional photographers no end I can tell you. I do love the photo but many of my favourite snaps of myself were taken by Steve. I have also inserted a snap Steve took in 2007 when he was well into being HD symptomatic. I still think he would handle a camera as well as any professional and know how bring out the best in me!
Long before I took on HD,
My darling Steve, you took on me.
Long before you needed my care,
My darling Steve, for me you were there.
Long before the problems came,
My darling Steve, you put me to shame.
Long before your illness came through,
My darling Steve, I felt safe with you.
Long before you needed my hand,
My darling Steve, you helped me to stand.
Long before I needed to cope,
My darling Steve, you gave me such hope.
It’s now long after, I hope that you found,
I was able to help when your turn came around?
And despite my progression, and what lies in store,
My darling Steve, you will help me I’m sure.
Today (25 November 2016) would have been mine and Steve’s 28th Wedding Anniversary. Another opportunity to blog in Steve’s memory. Not that I need an excuse that is…
As always, it provides an opportunity to give an update on what has been occurring in my life since my last blog ‘Poetry in Emotion’. And also to give an outline of mine and others’ efforts to raise Huntington’s disease (HD) awareness.
My previous Wedding Anniversary blogs can be seen here:
November 2011 – And the wisdom to know the difference…
November 2012 – Self indulgence
November 2013 – SILVER RINGS & SPARKLING THINGS
November 2014 – DEDICATION NOT MEDICATION
November 2015 – A Wealth of Mental Health
In my last Anniversary blog ‘A Wealth of Mental Health’ I talked about my new job as a Mental Health Tribunal Clerk/Assistant. I am pleased to say, as at the time of posting at least, I am still in the same job.
I haven’t yet come across any cases of people formally diagnosed with Huntington’s although I have to say I do sadly wonder at times. Not that I could do anything about it if I did have very strong suspicions of HD being present. Apart from the patient confidentiality angles being paramount here, I am always mindful of how knowledge (confirmed or otherwise) can be a dangerous thing when it comes to genetics.
Duty to warn
To illustrate my point, in Spring 2017 there will be a landmark Court of Appeal Hearing regarding the subject of ‘Duty to Warn’. The case relates to a woman who learnt of her father’s HD status as a result of his being discharged from a psychiatric unit.
The outcome of a Mental Health Tribunal was that the Patient be discharged back into the community where HD had been diagnosed. The Patient’s daughter was told of the diagnosis ‘accidentally by her father’s GP’. It is a very complicated story that leads to the Court Case and its Appeal Hearing. I first heard about the story back in mid 2015 in a blog article which can be read HERE.
Incidentally, with the wife not being alive (the man actually shot his wife if my internet searching serves me well) and where I believe the daughter in the programme was the eldest daughter, I think she would have been classed as the man’s nearest relative. To that end, she would surely have been given an opportunity to provide collateral input into the Hearing in some way? I can only assume there was a non-disclosure element if HD was cited at any point.
Fast-Forward to August 2016 and the story picks up in a BBC Radio 4 show presented by Joan Bakewell as part of her series ‘Inside the Ethics Committee‘. The full show can be heard HERE. In the Programme, a Panel of people look at the dilemmas posed from many different angles. They not only cover HD, they also cover a disease called Lynch Syndrome.
There is a big difference between being forewarned with genetic information in the case of HD and Lynch Syndrome and it is explored in the programme. The main difference being that early detection of a potential hereditary pattern could lead to early screening. Early screening could lead to early treatment. Early treatment could lead to saving lives. The life saving motivation for HD does not exist yet in terms of early detection leading to a more positive outcome.
Ethical dilemmas aside, it was good to get mainstream media attention for HD and get people thinking and talking about how there can be so many ramifications having HD is in the family.
Work Capability /Employment Suitability Assessments
On the back of Department of Work and Pensions (DWP) legislation changing the claiming of benefits, in January 2013 I felt compelled to set up a Government Electronic Petition (E-Petition) hoping to have HD cited as a condition to merit special consideration.
The actual E-Petition can be seen HERE and I blogged about my efforts in my posts Recognition is the name; E-Petition is the game and INSPIRATION NOT FRUSTRATION. The poem in the latter blog post was one of my poems so beautifully read out by Carol Royle. See HERE for her reading of My Inspiration.
I got a perfectly respectable 4,000 signatures, and a lot of awareness on the back of the social media plugging of the petition. However, in terms of getting enough signatures to force a debate in the House of Commons or make the DWP sit up and take notice of HD it wasn’t the most productive use of my year I suspect.
Whilst in no way connected to my own personal efforts, there was at least some good news this year that DWP are re-thinking their policy of treating claimants with long term conditions where there is no realistic chance of improvement over time.
In October, the BBC reported HD was to be one of the conditions being looked at more sympathetically when it comes to Employment Suitability Assessment (ESA). It has been recognised it may be unreasonable to put someone through the stress of re-assessments, when there is no likelihood of being able to re-enter the workforce, once the condition begins to affect the person in earnest. The BBC article can be seen HERE.
It is not lost on me that the changes do not take immediate effect, and that when the details are drilled down into further there is the small matter of interpretation of the word ‘severe’ which needs to be defined better as it’s not an automatic decision based on a diagnosis. However, it is a start and a victory for common-sense!
I really hope the Huntington’s Disease Association are working closely with the DWP and Health Departments to educate people on the more discrete issues (for that read Mental Health as well as more subtle physical symptoms) that come with HD. And how those symptoms can impact on families already struggling to cope behind closed doors. The self-denial and stigma surrounding the hereditary nature of the disease; often resulting in a lack of important information being openly shared by the family within themselves and with others.
Writing out of the HD Shadow
My entry can be seen below:
“You take after your father you clumsy oik” she joked as Bill dropped his spoon. Custard sprayed itself over the laminate.
“That’s because you take after your mother. Nan’s custard’s lumpy too. One way of getting out of eating” Bill quipped back.
“Where is dad by the way?”
“He said he would be late today, some meeting to attend”. Mum replied.
Bill played with his food a while. Then broached the subject.
“Mum… Is dad alright?”
“In what way Bill?”
“He seems quiet… seems down.” Bill replied.
The front door opened, slicing through the awkward silence.
They waited longer than comfortable for dad to come into the lounge.
He’d gone straight to the bedroom.
Mum found him sitting in silence. Piece of paper in hand.
He’d lied about a meeting to attend the Clinic.
He held out the piece of paper.
“Please God… Don’t let my son take after me”
The wining entries were announced at an event in Glasgow on 7 November. Whilst I was not one of the winners, I was thrilled to hear my piece was one of the 20 short-listed entries put forward for judging by Michael Malone and Alan Bissett.
So near yet so far. Still chuffed to bits though to have made it to the short-list!
#SybilOnTour et brooch d’amour
Over the Summer I embarked upon a totally random awareness and fundraising campaign. Jackie Harrison, who is one of my HD community friends, has been making little felt toy dogs in the image of her own dog – Sybil the Border Terrier. More information about Jackie and her HD connection can be read on an article she did for CarersUK. See the full article HERE.
In a nutshell, I visited every one of the Stations on The London Underground map and took a photo of ‘Sybil’ against a Roundel or other proof of location and put the photos together in a little video. The video can be seen HERE.
As at the time of posting this blog, £268 has been donated. If any readers have a spare £3 (less than the cost of a pint) I would be eternally grateful if you could consider making a donation or share the video more widely. Every little helps as they say…
Along the way there were the emotional moments when visiting Stations and areas that reminded me of Steve and our life together. One such place was Oxford Circus where Steve had worked at Burtons Group HQ (now Arcadia) in their Import Department when we were courting. I would meet him from work and we would go to the The Argyll Arms (still there) or The Dog and Trumpet Pub on Carnaby Street which has now sadly been taken over by the O’Neill’s Chain.
One of the first presents Steve bought me was a real leather jacket from a shop in Carnaby Street. Given Steve worked in one of the UK’s largest clothing companies, and had a generous staff discount, some would say he was daft to splash his cash in a small independent shop but it was one of those spontaneous gesture moments bless him. I loved that jacket and wore it on a weekend trip to Paris a few weeks later in April 1988.
We booked the trip to exchange engagement rings. I had proposed to Steve on Feb 29th as a bit of a joke/bet with a friend and didn’t have a ring where I wasn’t really expecting him to say “yes”. We had only been going out for a few months after all, and being Leap Year Day it was an opportunity to have a laugh more than be taken seriously by Steve.
It hadn’t been that long ago, relatively speaking, that I had got out of a very long term relationship and engagement to another man. I just couldn’t bring myself to marry the guy even though we had gone as far as buying the wedding rings along the way and had lived together for a while.
In case you were wondering, I didn’t propose to the other guy. He proposed to me very early on in 1980 but it took a while for me to say “yes”. I then dragged out making the actual arrangements. I suppose I never really felt comfortable committing to the guy if I’m honest. With Steve though, it was different. If he would be brave enough to take me on that is…
The three photos below where taken by Steve on that weekend Paris trip wearing said jacket. Fun; romantic; happy and carefree. Our honeymoon, seven months later, was a weekend in Bournemouth. Long story but we had only come back from two weeks in Rhodes a few weeks before and were not able to take much time off work. Not quite as romantic a destination but still a wonderful honeymoon trip with a wonderful man!
The next set of photos are from a a day trip to Hampton Court and our first holiday in Jersey (photos 2 &3). I still have the brooch seen on the jacket lapel. I hope people agree that Steve rocked a leather jacket far more than I ever could!
The little brooch is a white Persian cat painted on enamel. Steve bought it for me when I admired it as we walked along the Seine in Paris on our engagement trip. There was a little stall with many lovely things. Steve knew how much I adored cats and felt I just had to have it.
Going back to my Underground Challenge, there were also the moments of serendipity which kind of told me Steve was comfortable with my wacky adventure.
For example, I had planned to take on The Jubilee Line one day and was forced to change route when there were train issues. Not a problem as I could get off the train I was on and change to cover The Bakerloo Line instead so as not to have wasted my whole day. On the platform at Lambeth North Station on the Bakerloo Line I heard an announcement that in the next few days Lambeth North was due to close for several months for “Lift maintenance”.
As much as I had done my homework to project plan the most time effective order of tackling the Lines, I had missed seeing that Lambeth North was going to be closed for several months. To that end, I could not have completed the Challenge had I not got the snap on the day that I did given it was my last opportunity to visit it where needing to organise myself around work days!
Another moment of serendipity came when I was trying to pull the video together. I am not very clever when it comes to doing anything more than the basics in Windows MovieMaker. So when it came to working out how to get my narration recorded and under the slideshow I was a bit stuck as to how I could do it. I was finding problems left, right and centre where the format was not compatible with the programme I was using.
Believe it or not, I am actually nervous of using IT. I am so nervous of IT I don’t use my SmartPhone lest I get frustrated with the thing and throw it! I go so far as to subscribe to the BT Tech Experts Package. With the problem getting frustrating I called the Team toask for help in downloading the right free software. The service has a remote user facility that allows the Operative to do the work while the Customer watches on in awe (or at least I do).
The Operative I got straight through to not only helped by remotely finding and downloading the right software, he talked me through how to record and save recorded media to my video.Whilst I am used to having very good support, I was amazed at the level of detail and tutorial he went into to make it so much easier. At the end of the tutorial, he mentioned I best not add the detailed level to which he had gone to when giving feedback if prompted. He shouldn’t really have spent so much time on helping me.
It just so happened that he had a hobby doing a similar thing to what I was doing in using WindowsMedia and linking audio from different sources. That was why he knew exactly how to help as opposed to pointing me to the direction and leaving it for me to worry about conquering the finer details. In essence, out of the thousands of staff on call that day, I was led straight to the one who could help the most and be aware of the complexities using the audio software as I was trying to do.
Although originally I had not set a deadline for my task, along the way I managed to set one when speaking to the HDA. With their Family Weekend/AGM coming up early November, we agreed it could be a good opportunity to screen it at the Conference.
Cath Stanley (CEO of the HDA) would present it and Jackie could also use it as a a lead to her giving a talk on her #Hounds4Huntington’s project, now expanded into incorporate #SybilOnTour. Without the above serendipitous episodes there is no way I could have fulfilled the project. I still like to think it was Steve’s way of either saying he would lend a hand, or taking over where I always seem to go over the top and bite off more than I can chew. Either way, I’m very grateful 😉
The photos below were taken by Jackie of the video being shown. The Family Weekend has been going for years but Steve and I never made it to the Weekend. Steve was uncomfortable with being around others with HD so I never pushed him to go even though it would have been a great support meeting others in the same boat.
I appreciate I could now go on my own but it wouldn’t be the same going anywhere without Steve. Seeing our photos on the big screen makes me kind of feel we got there in the end together and did our little bit together. 🙂
Having conquered the time-table to get the video done for the AGM showing, no doubt with the help of Steve lol, I had time to play around with the snaps and do a kind of parody version of the song Sound of the Underground originally made by Girls Aloud. See HERE for my take on the song – Hounds on The Underground. The lyrics are on the link HERE for people of a nervous disposition given my voice (there is a mute option), but still interested in my new lyrics.
Finally, a little poem for Steve accompanied by a photo of the brooch and a couple of photos from the last trip we took to France. They were taken in Lille in July 2005. We were on one of our short trips hopping over to France on the Eurostar from Waterloo. Sometimes it was easier and cheaper to go to France for the weekend than it was to travel in and around the UK. HD didn’t mean we had to stop being adventurous and romantic 😉
Strolling along the Banks of The Seine,
I’m taking a chance on engagement again,
But this time feels different, now I can tell,
That you and me work, where you know me so well.
We stop at a stall filled with jewellery and art,
And we both seem to fix on what’s stealing my heart.
Before I need say it, and comment “how sweet”,
The brooch is picked up and is bought as a treat.
The brooch gets pinned to my jacket of leather;
Another gift bought on a day out together.
Fun filled times when we both feel carefree;
We will treasure our time in advance of HD.
I knew it existed and could be a threat,
But a test confirmation was not in place yet.
Your duty to warn me was never in doubt;
You mentioned HD when first going out.
We packed in a lot and although you are dead,
You can still bring new memories from heart to my head.
A trip taken now brings it all to the fore,
And the shelf in my brain has room to take more.
There were other trips taken and more gifts exchanged;
Be they spur of the moment or things pre-arranged.
Over twenty eight years since the brooch came my way,
And it still makes me smile when I think of that day.