REFLECTING & DETECTING.
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
Posted on January 27, 2019, in Uncategorized and tagged Huntington's; HD; Medical Law; genetics; Shepton Mallet; Insurance. Bookmark the permalink. Leave a comment.