Monthly Archives: May 2018
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