Recognition is the name; E-Petition is the game.

In my last blog entry Ring a Ring o’ Roses, I mentioned a new project I was working on. Not a book; not a poem; not a video slideshow to music of my Steve.

I have started up an E-Petition and need signatures. Lots of signatures. 100,000 to be precise but 10,000 would be excellent! I have one year to get as many signatures as possible.

It’s a proper E-Petition, linked to the House of Commons and I’m not standing on street corners thrusting a clip board under peoples’ noses. This one needs to be accessed and signed and verified by people when they click on a link in their inbox. It’s only open to UK Citizens (that being people who normally reside in the UK aka voters). Sadly that means I can’t sign for Ruby the Cat and a posthumous Steve but if I am one signature out I may start getting inventive lol.

For those of you in a rush…

CLICK HERE and PRETTY PLEASE SIGN.. Do come back again to have a nose at why I wanted to stand up and be counted.

For those of you who want to know more, read on…

In 2005 my husband, Steve, was diagnosed with HD.  Steve had been symptomatic for quite a while and on Job Seeker’s Allowance at the time. He truly thought he would get another job despite it being obvious to me that he wouldn’t be able to cope. He had previously lost a string of jobs. None of his employers knew he was ‘at risk’ of HD and this could explain his behaviour, or that he had watched his father and other relatives die with HD. A ‘hidden’ illness and a stressful existence at the best of times, without the added layer of knowing he too may suffer. Whilst Steve did have mild symptoms of chorea, the main impact of his HD had manifested itself in his thinking structure and could therefore be hidden to those who didn’t know him as a person, or were unfamiliar with HD.

Delay in diagnosis was driven mainly by Steve’s denial that anything was wrong. Apart from not wanting to face up to living with what is an incurable and devastatingly cruel disease, it is now recognised that some HD patients may suffer from what is called ‘organic denial’ or ‘unawareness’. See Dr Jane Paulsen’s paper HERE

At the time of accepting the need for social benefits (Disability Living Allowance and Incapacity Benefit) Steve was heavily reliant on me to take the helm and apply. The formal diagnosis and statements from the medical profession were paramount in securing support. As the illness progressed the ‘care component’ was adjusted upwards accordingly following an application by me, supported by the specialists. We didn’t need to have interviews, the expert’s recommendations were taken as sufficient. At the time, I thought it was hard work getting that far… a husband in denial and, dare I say it ‘ashamed’ to be asking for help. Had we been knocked back, having got that far, I don’t think we could have coped. I am sure Steve would have ended up in a nursing home where I would have gone under. It seemed like a mountain of paperwork and filling in forms. Little did I know how easy we may have had it compared to now.

Fast forward to 2013.

With the reform of the processes for applying for benefits, and the changes in areas such as Work Capacity Assessment, every day we read about vulnerable people being categorised as fit for work where it is clearly the wrong decision. I am now hearing on social networking (Facebook and HD Support Groups) of cases where people are terrified of the future and being put under financial uncertainty and stress on top of the other day-to-day issues in coping with the illness itself.

The lack of awareness of conditions means decisions are sometimes made without consideration of the true nature of an illness and/or prognosis. The word of the experts and loved ones no longer seems to be given as high a status of being reliable. A person at a computer may decide they know better from a short meeting. This isn’t just my opinion… READ HERE the transcript of the full proceedings of the House of Commons ‘Backbench Business — Atos Work Capability Assessments’ reported from 17 January 2013.

To quote Michael Meacher MP

“Atos’s current work capability assessment system is drastically flawed, and for several reasons. First, Atos is an IT firm and it uses the so-called Logic Integrated Medical Assessment, which is often described as “rigid” and “tick-box” because computer-based systems make it difficult for health professionals to exercise their professional judgment. Because such a mechanistic system has little or no regard for the complexity of the needs of severely disabled or sick persons, the British Medical Association and others have condemned the current WCA as “not fit for purpose”.

Upon hearing of, and reading about the debate, I felt compelled to exercise my right to set up an E-Petition. The petition is titled:

 Huntington’s disease – Recognised and considered appropriately for benefits.

 The wording is given below, and The Petition itself can be seen and signed HERE

‘Responsible department: Department for Work and Pensions

 With the call by Cheryl Gillan for claimants with Autism to be treated differently under the work capability assessment tests, we call for those claiming for Huntington’s disease (HD) to also be granted special treatment ‘so that it is fair and appropriate for claimants’.

 HD is an inherited brain disease for which there is no cure. Classed as ‘rare’, the lack of informed medical knowledge about HD can lead to misunderstanding of its likely progression. Those diagnosed currently have a life expectancy of below 20 years from symptom onset.

 The government previously singled out HD in the case of insurance. Having already decided positive testing means a life is of limited timescale, we urge the government to recognise the need to streamline the benefits process for those suffering and their carers.’

The reference to Cheryl Gillan stems from her plea to consider those with autism to be considered appropriately. See Backbench Business transcript as previously linked above.

 ‘There have been key concerns with the face-to-face assessment process. The work capability assessment model can certainly prove to be challenging in the context of claimants with autism. Most people with autism have difficulties with social interaction, and some will also lack insight into their difficulties. They may also have difficulty understanding the questions being asked and with communicating a response. Even travelling to the assessment centre and engaging with the process may be difficult to understand and create great anxiety. Therefore, face-to-face assessments may not always result in a fair and accurate assessment of claimants’ ability to work’.

The above seems on a par with those facing a number of neurological conditions such as HD in terms of not being able to comprehend what is being asked and the great anxiety caused.

My petition also makes reference to HD in the case of insurance. This stems from the decision made in 2000 by the Genetics and Insurance Committee to immediately allow HD to be singled out, given the reliability of the test to determine a person’s future. News article HERE

To quote a later Report in October 2008:  House of Lords – Science and Technology Committee – Minutes of Evidence, Genomic Medicine

 ‘it is the only one [area of exemption] where we think the evidence is sufficiently strong that we can separate out the impact of the gene in relation to the risk of death from other broader environmental factors.’

Full text HERE

I  am no expert, and I am understandably biased, but I read that as an acknowledgement of clear discrimination already. If the government are to take the line that no individual disease can be taken by WCA for positive discrimination, I would argue they should apply that across the board for any other form of discrimination against a named illness too. Something they seem to have missed in the case of gene tests and insurance.

For those who come in for the poetry…

No new poems today but I have given below a couple of poems which are taken from Curse in Verse and Much More Worse. I couldn’t resist putting in a couple of photos of Steve too. 🙂

There is about 18 months difference between the two photos. In one Steve can walk, albeit doddery bless him. He is sat on a train looking wistfully out of the window.

In the other he is in a wheelchair and, although still able to read and communicate with me as his interpreter, his decline has been rapid. For those having to wait for months for a decision (having had their support payments withdrawn in lieu of that decision), those precious months can never be bought back.

The Benefit Cheat

The HD now affects his brain;

His office getting worried.

Relationships begin to strain;

His exit now gets hurried.

With wife aware his time is short,

And skills get more diminished,

She hasn’t got the heart to say,

His working life is finished.

Their income now is cut in half;

They can’t afford their pride.

He could apply for further help,

If HD weren’t denied.

The benefits kick in at last,

When diagnosis made.

No mention though of all funds,

The system could have paid.

The Insurance Salesman

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!