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News and Opinions about MS, Health & Disability

Missing Pieces: Missing too much to be meaningful

missing pieces

While I hate to decry any research connected to multiple sclerosis, I feel that this is one of those times. I cannot stay quiet.

A new report says 25% people with MS in the UK don’t know about treatments that may help delay disability. And that’s despite most of them saying disability is their big concern.

But, although the report talks about massive percentages backing up supposed `facts’, those figures gloss over a big problem. The size of the research sample is pathetic.

The MS Society estimates there are 107,000 people with MS in the UK, but the sample size was just 100. Absolutely ridiculous. Additionally, the researchers also surveyed 120 neurologists.

According to CheckMarket, a leading cloud-based survey software solution with more than 10,000 users in 150 countries, the sample size needed to be nearly 2,350.

Apparently, the report was funded by Sanofi Genzyme and conducted by Adelphi Research UK. It is titled The Missing Pieces though, as far as I can see, the main thing missing was a big enough sample.

Only 100 people gave their views, so any percentage given cannot be scaled up to purportedly represent the views of 107,000 people.

It is a great shame really, as the research results would be worth considering if the sample was large enough and was truly representative. But it was neither. Also, online questionnaires are not the best way to obtain a representative sample.

‘Missing Pieces’ misses target

The organizers claim that The Missing Pieces campaign aims to explore attitudes and behaviors around MS treatment in the UK, and to identify gaps in knowledge, understanding, conversations, and treatment/care plans.

Sad to say, because they didn’t plan well enough, their efforts have failed to reach that aim in any meaningful way.

Bearing in mind my warning that the views of 100 people are unlikely to be meaningful, here are its major findings:

  • Around three-quarters of healthcare practitioner think MS patients face delays in beginning DMTs. They blame poor access to neurologists with MS specialities. This is despite the fact that disability prevention is a key goal of the country’s National Health Service. An MS neurologist is needed to start a patient on such treatment
  • 45% of patients said their primary healthcare specialist was an MS nurse. And 20% reported turning most to general practitioners
  • Among all patients surveyed, 36% said they had not seen a neurologist in the past 12 months
  • 50% of patients said they discussed disability with a doctor or nurse at the time of diagnosis. Yet only 34% reported having continuous conversations on disability during subsequent visits
  • 69% of healthcare practitioners reported “routinely discussing” disability with patients around the time of diagnosis
  • Among patients, only 22% reported discussing treatment goals with a healthcare practitioner
  • 45% of patients said they were “scared” they would be disabled

Sanofi Genzyme is the specialty care unit of Sanofi. It markets Lemtrada (alemtuzumab), and Aubagio (teriflunomide), both for use by people with relapsing-remitting MS.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Disability benefit cuts are still a real risk

This week is the first of the six-week summer recess of the UK parliament, which is a great time to look at welfare benefits for people with disabilities.

Regretfully, despite more than a year passing and a new government, albeit the same party, nothing has really changed.

In April last year, I reported that the then secretary for work and pensions Stephen Crabb was about to make a statement about government plans and cuts to welfare benefits. That was after he had said that it had decided not to proceed with planned cuts. They were unpopular with the disability community and controversial within the Conservative party.

benefits

Stephen Crabb.

A month earlier, I wrote an article headed ‘No further plans’ does NOT mean ‘no further cuts’ after Crabb spoke in the House of Commons.

He said that the government “will not be going ahead” with changes to the Personal Independence Payment (PIP) that were announced. He also said there are no further plans for welfare cuts this parliament. (Bold italics are mine).

Their words don’t always mean what you think

I warned that it did not mean PIP was safe – just that the cuts would not be going ahead in the form previously announced. And the part about ‘this parliament’, meant to take us to 2020, is now irrelevant as we have sinve had an early election and have a new parliament.

Then, on May 14, I wrote another post. It was headed ‘No further plans to cut benefits’ pledge lasts 51 days and told of new plans.

Prime minister Theresa May.

About the same time, prime minister Theresa May refused to rule out making further cuts to disability benefits. This wvas widely reported by British daily newspapers.

In March, I wrote about the meaning of the words we heard. In an article headed Don’t be fooled by government’s callous weasel words – disability benefits cuts are still planned, I reported the words of Stephen Crabb as: “We’re not going to be going ahead with these cuts to disability benefits that were proposed on budget day.

“The prime minister has confirmed that himself. I was very clear when I discussed the offer of the job this morning we were not going to go ahead with the cuts that were proposed.”

Cuts to benefits – and weasel words

I also added my own comments:

Sounds good, right? Well, err, no. The key words in the first sentence are ‘that were proposed on budget day’. Similarly, two sentences later the telling words are ‘that were proposed’.

Now, call me a cynic if you like but I have worked as a journalist, spent time in public relations and been around politicians long enough to recognise this for what it is – the use of prepared phrases, or callous weasel words, designed to trick us into thinking the cuts won’t happen.

The government is just trying to buy time to find a way to get them through in another form and without rebellion from within their own MPs.

David Gauke MP. (Picture: South West Herts Conservatives Association).

Trust me, despite what we are being led to believe, the cuts are still very much on the table

What has happened since then? Plenty, but absolutely nothing to prove me wrong or make me change my mind.

As for the current secretary of state for work and pensions, David Gauke, little has been heard, except a change to the timing of a planned increase in the retirement age.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Speaking out to raise awareness may not be easy but it’s vital

I write and speak openly about the fact that I live with a disability, and have multiple sclerosis. It is not difficult for me. I do it to raise awareness of the disease and to help others.

People often find it hard to speak about having a so-called ‘invisible’ disease but, to me, MS is no longer invisible. My mobility is severely affected and is clear for all to see.

Those whose sicknesses are still hidden but choose to talk about them are the true heroes. They are the brave ones.

speaking

Referee Nigel Owens (Pic: Welsh Rugby Union).

For example, let’s look at rugby union top referee Nigel Owens.

So far, and nothing to do with any illness, he was the first rugby union player or official to ‘come out’ as being gay. However, there is more. He admits that when 26 he tried to commit suicide.

In the past, he has also spoken about his successful struggle to overcome eating disorder bulimia nervosa. But now the man who refereed the 2015 rugby world cup final has revealed that bulimia has returned. Bulimia is a disorder of overeating followed by fasting or self-induced vomiting or purging.

Owens told BBC News: “For those who are caught up in eating disorders and say there’s nothing they can do about it, I understand. It takes you over and you feel there is nothing you can do.

“But I would urge anyone suffering to do something. Seek professional advice, tell people about it, don’t hide it, don’t lie about it, that’s a great first step.

Speaking openly

“I came back from refereeing the England summer tour in Argentina a few weeks ago. While I was out there, I made myself sick three to four times. I think because I was eating more food than I needed.”

“I’m speaking openly about it because I know that men and boys can view it as a sign of weakness by admitting there’s a problem that you can’t sort out yourself. But it’s not a sign of weakness; it’s a sign of great strength to do that.

“If men can find it within themselves to open up about their own experiences of eating disorders, you would find them in all walks of life and in every sport in the world.

“So, the more men talk about eating disorders, the easier it’s going be to bust the stigma that this is only a female problem. More importantly, (we can) raise awareness of the help needed and ensure the funding is in place.”

Owens continued: “As for me, I’m focusing on passing the fitness test for the 2019 world cup. What the challenges will be when I finish refereeing and I won’t have to train for something, I really know.

“But one thing I absolutely do know is that the bulimia can’t carry on. And I just hope that by speaking about my experience I can help many others reach the same conclusion.

“It’s not always easy to get the help you need when you need it. So, the sooner you start talking to people the better.

“Don’t be in my situation; 27 years on and still suffering from it,” he said.

I find it inspiring that Nigel Owens has chosen to go public about his struggle against bulimia. I hope others agree.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Wheelchair-users not able to board ships at major cruise port – so much for equality

wheelchair

A woman whose husband was told that she could not board a cruise ship at Liverpool, England, has me thinking. The woman has a disability and was denied access because she could not leave her wheelchair to board her ship.

When her husband tried to book the cruise, he was informed that the port of Liverpool doesn’t have equipment to assist people in wheelchairs. So, he was told that he could not book a place for his wife on the cruise.

wheelchair

Fred Olsen’s Boudicca at Liverpool Cruise Terminal (Pic: Wikimedia Commons).

Ann Fisher and her husband had wanted to travel on a seven-night Emerald Isle cruise with the Fred Olsen line.  But that plan sank when Fred Olsen said she had to leave her wheelchair and get up the gangway steps alone.

Mrs Fisher, a retired lecturer, had twice cruised with Fred Olsen from Liverpool. Now, though, a port policy change means she and her wheelchair have been left high and dry.

Speaking to cruise.co.uk, she said: “It’s quite devastating. I wouldn’t consider going from another port because of the travelling involved.”

Also, she wonders why she was able to cruise without hassle in the past, despite her disability: “It was so easy when we did it before. We got a taxi to Liverpool, and were in our cabin just over an hour from leaving home. It was ideal for someone like me who finds it difficult to travel.”

Liverpool port lacks wheelchair facilities

Her husband John Fisher confirmed that Ann’s disability had previously not been a problem. He said: “We were able to enjoy two Fred Olsen cruises from Liverpool in 2013 and 2014, occupying a wheelchair-adapted cabin.

“Access to and from the ship was easily accomplished. Four sturdy members of the crew lifted my wife’s wheelchair at the corners. Her chair is lightweight, as is she.”

A Fred Olsen spokesman said there is neither an overhead bridge nor a sloped gangway at the Port of Liverpool. As such, the company is restricted from assisting guests, who are fully confined to a wheelchair, to board ships.

I can sympathise with the Fishers but also with Fred Olsen. After all, health and safety regulations would not allow staff to manually lift a wheelchair and its occupant. It wouldn’t be safe for the occupant or the staff. Whatever happened in the past is irrelevant as it is no longer allowed. Period.

What does puzzle me is why the Port of Liverpool doesn’t have facilities to ensure people with disabilities have access. It is the 21st century, the UK’s Disability Discrimination Act requires companies to provide access for disabled people. Liverpool’s cruise terminal in only 10 years old. For it not to have such facilities is an absolute disgrace. Shame on you, Liverpool. It needs sorting out, NOW.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Disability rights? Assisted suicide question in court again

suicide

People on both sides of the assisted suicide/right to die with dignity debate are in court again this week. And both claim to be working for the good of people with disabilities including multiple sclerosis.

On one side are Noel Conway, supported by Dignity in Dying activists, is seeking a ruling from the High Court that would give terminally ill people in the UK the right to die.

Opposi.ng them are the government’s Ministry of Justice and Not Dead Yet UK (NDYUK) campaigners. The case is expected to last four days,

Mr Conway, 67, has motor neurone disease. He wants a doctor to be allowed to prescribe a lethal dose when his health deteriorates further.

He said he wanted to say goodbye to loved ones “at the right time, not to be in a zombie-like condition suffering both physically and psychologically”.

Under British law, any doctor who helps him to die could face up to 14 years in prison.

Mr Conway was too weak to attend court, his barrister, Richard Gordon QC, said his client faces a stark choice. This is either to seek to bring about his own death now while still physically able to do so, or await death with no control over how and when it comes.

Mr Gordon said the change to the law that Mr Conway wanted would apply only to adults who are terminally ill with less than six months to live and who have a settled wish to die.

Mr Conway, of Shrewsbury, told the BBC: “I will be quadriplegic. I could be virtually catatonic and conceivably be in a locked-in syndrome – that to me would be a living hell. That prospect is one I cannot accept.”

He is a retired college lecturer, and used to be fit and active but motor neurone disease is gradually destroying all strength in his muscles. He cannot walk and increasingly relies on a ventilator to help him breathe. As his disease progresses, he fears becoming entombed in his body.

Safeguards ‘never enough’

NDYUK’s position is set out on its website. It says: “Not Dead Yet UK maintains any imposed safeguards will never be watertight enough to successfully protect all ill and disabled people from a change to the Suicide Act. The Act currently provides much needed protection to disabled and terminally ill people by prohibiting anyone from assisting another person to kill themselves. Even if only one person dies against their wishes as a result of a change to the law that is one death too many and completely unacceptable.

“We argue that disabled and terminally ill people are just as entitled to this protection as everyone else; to single out one group of society as different to the rest is a dangerous move and will be open to misinterpretation. Legalising Assisted Suicide for disabled and terminally ill people would again set us aside from the rest of society. We would effectively be second class citizens again, with suicide seen as a valid choice for us while non-disabled people would be encouraged to live.”

Baroness (Jane) Campbell of Surbiton is a disability rights campaigner and a co-founder of NDYUK. She says changing the law would send all the wrong signals.

“We have successfully seen off attempts to change the law on Assisted Suicide in Parliament. Now we must change tactics to ensure the courts continue to uphold our equal right to life. The law must not be weakened via the back door,” she said.

The last major challenge to the law was turned down by the Supreme Court three years ago. At that time, it ruled that courts can interpret the law but that it is for parliament to change them.

Assisted suicide should be a choice

I set out my own views on this issue in this blog on December 17 last year. I said:

Where do I stand? You may well ask!

Well, my religion’s tenet is ‘if it harms none, do as you will’ and so my beliefs don’t tend to fit in with mainstream faiths. That being the case, I cannot accept the religious argument. Choosing to end your own life with your family’s understanding, is not hurting anyone else.

Switzerland has amply demonstrated that the ‘slippery slope’ is not inevitable. They have ample checks, medical and otherwise.

Asking medical professionals to get involved would not be as awkward as may be imagined. There are plenty now that would like to help people with unendurable and never-ending pain to close their lives with dignity. Anyway, it would only be voluntary not compulsory.

Now, far be it from me to cast doubts on the ‘alternative’ argument but the so-called ‘end of life’ treatments are purely palliative in nature. They relieve some symptoms to reduce pain etc but do little, if anything, for quality of life.

Now, at present, at just a year younger than Andrew, nothing could be further from my mind. Despite having lived with MS for 16½ years, live is good, and is for living. I can’t imagine ever making the same decision that Andrew Barclay made but I think we should all have the legal right to make it.

And that includes Noel Conway.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Mobility aids need to be embraced, not feared

We often say that we are people with disabilities, not disabled people. That is, we are people first. I agree with that view, and have said so before.

The overall point is that we are all individuals, we are not our diseases. But some run the risk of taking that too far as they refuse to use aids that would make their lives easier.

Take mobility problems as an example. It is not unknown for some people to show reluctance to even using a walking stick or cane.

That same reluctance seems to exhibit itself at every stage that mobility deteriorates. Each new piece of equipment designed to overcome a difficulty in walking. They include the use of two canes, a walker, a rollator, a wheelchair and, ultimately, a powered wheelchair or a scooter.

mobility

In one of my wheelchairs on a Mediterranean beach, close to my home.

I make no secret of the fact that I have mobility issues, caused by multiple sclerosis. At home, I manage to move around using furniture and walls for support. But, even doing that, I can still fall. Outdoors, I can´t walk a step without support of one type or another. Even with support, I can walk about 15 yards before looking for a place to sit down.

That was the reason I decided to buy a rollator, a form of walker on wheels with brakes like a bicycle and parking brakes too. Add to that a built-in seat and, when I need one, I have my own chair.

Mobility aids are tools to help

I looked at using a rollator as a positive step. Instead, it allows me to walk more safely and take a break whenever needed without any risk of falling.

To travel any greater distances, I use a wheelchair but this is a tool not a way of life.

For me, a wheelchair is not a last resort, not something to dread. Instead, I look at it as a valuable tool that gets me to go places I couldn’t otherwise reach. So, instead of being disabled, I consider myself wheelchair-enabled.

What’s more, when using my electric wheelchair (I have an older, manual one as well) I am also independent as I can go places by myself.

To anyone who has a mobility difficulty, my message is simple. Don’t be afraid to try the next aid. You might be surprised by how much it helps you.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Humour? We are falling over ourselves laughing

humour

When you live with a disability, whether through multiple sclerosis or another cause, humour can help. It may be a twisted form, but it’s still humour.

I find that, these days, laughter comes when it is least expected.

It can come after I end up on the floor at home, especially if that is because I misjudged the distance to a chair or a hand grip. Instead of sitting there and pounding the floor with my fist, while crying “Why me?”, usually I see the funny side and just laugh at my own predicament.

That’s not to say that I never ‘lose it’ and curse this damned disease but, normally, the laughter takes over. In fact, as if getting up from the floor isn’t difficult enough, often I have to wait until I can stop laughing. Then, and only then, can I begin to pull myself up again.

Out and about, I use a rollator to walk just a few yards, such as from our home to the car outside. For any longer journey, I rely on a motorized wheelchair.

That, in itself, can be another source of humour. My very first motorized mobility aid was a second-hand scooter that I bought on eBay. It opened up a whole new world but the inaugural trip wasn’t uneventful. In our local park, I messed up and almost ended up in the paddling pool. Fortunately, disaster was averted and Lisa and I ended up laughing at my near miss.

Bare butt humour

A couple of years ago, we were visiting Lisa eldest sister who lives in New York state, about a half hour train ride from the city. We enjoyed a meal with sister Gen, her husband, three children and two of her grandchildren.

After her offspring and grandchildren had left, I managed to fall in the downstairs ‘half bathroom’ which is a room with a washbasin and toilet. The problem on this occasion was a loose mat that proved too much for me and my limited mobility to handle.

I was in a confined space and managed to get to my knees but not any further. I needed help and had to wait for Gen’s son to return for him to render assistance. My trousers and underpants were both around my thighs and, being on my knees with my arms on the toilet, everyone got a great view of my butt. Much mirth and laughter from everyone, especially after Gen’s husband Billy said he’d fallen in love with it. Enough said!

Actually, earlier on that same trip, Lisa and I were in Honolulu and used a vehicle converted to carry a wheelchair. I was loaded on in my chair, secured and off we went. What I hadn’t realized was that he driver ad secured the rear of the chair but not the front.  The first I knew about that was when the driver pulled away from some traffic lights like Sebastian Vettel stating a motor racing grand prix.

No longer sitting upright

The start threw me and my chair backwards. This was unnoticed by either the driver or my beloved wife, sitting in the front.  Grabbed their attention by saying “You might like to know that I am no longer sitting upright.” Lisa looked back and saw my feet in midair. She asked if I was hurt and when assured that I was ok, she just burst out laughing, me too.

Not the driver, though. He was so apologetic, and stopped to pick me up and this time secured the chair at the front as well. The poor man was so sorry and worried that he’d lo-se his job but we were too busy laughing. We did not complain.

The lesson I have learned is that you can’t take yourself too seriously.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Disabled politician condemns government’s ‘suffer and die’ policies

New Labour MP Jared O’Mara, who has a disability, has accused the Conservative government of introducing policies in the hope that disabled people will “suffer and die”. It is a view with which I find it hard to disagree.

O’Mara is now one of just a few disabled MPs, he has cerebral palsy, in the UK´s House of Commons. At the general election, he won Sheffield Hallam from former Liberal Democrat leader Nick Clegg. Clegg was also deputy prime minister in the 2010-2015 Conservative-Liberal Democrat coalition government.

disabled

Jared O’Mara MP.

Speaking to Disability News Service (DNS), O’Mara said he knew that his comments would be controversial. But he said he firmly believed that Tory ministers had “completely torn up the welfare system” which had previously supported disabled people. He particularly criticised cuts and reforms to disability benefits, the decision to close the Independent Living Fund, and cuts to social care.

“They want disabled people to suffer and die. That’s literally what’s happening.

“Disabled people are out there suffering and dying because they have not got the financial means and financial support and nor have they got the legal means to lead an equal life, or even to lead a satisfactory life.

“I’m not going to shy away from it, people might say I am taking it too far, but as far as I am concerned, what I have seen and what has happened across the board, it’s been eugenics1.”

He promised that he would be “taking no prisoners” as an MP, and would “call them out on this”.

He said: “There are people just like me and people who have got conditions that make things even worse for them than mine does, and they are dying and they are suffering.

“I am in it to shine a light where the mainstream (media) do not shine a light and where the Tories (Conservatives) are turning their backs.”

He said he “absolutely” endorses efforts by user-led anti-cuts groups such as Black Triangle to secure a criminal prosecution of Duncan Smith and fellow former work and pensions minister Chris Grayling.

In December, Scottish authorities decided not to investigate the refusal of the two ministers to improve the safety of the government’s “fitness for work” test. This was despite evidence that the refusal caused the deaths of at least three benefit claimants with mental health conditions.

Coroner warned DWP about disabled tests

This evidence mirrored flaws uncovered by a coroner in January 2010, following an earlier suicide. The coroner passed his findings, as a warning to the Department for Work and Pensions.  This was a few weeks before Duncan Smith and Grayling took up their new posts following the 2010 general election.

Duncan Smith and Grayling failed to act on the coroner’s warning.  Campaigners, and families of some of those who died, believe this failure led to further deaths.

O’Mara said: “The legal system is ‘innocent until proven guilty’. We need to ascertain that (innocence or guilt) with what Iain Duncan Smith and Chris Grayling did.

“If they’ve not done anything wrong then they can walk free. If they have done wrong then they can be punished.

“I believe there is a case to answer and they should go there. I support that campaign without reservation,” he said.

1 Eugenics is the idea that society can be improved by selecting those who are allowed to survive and breed (definitions of eugenics vary).

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Awards for good attendance discriminate against sick and disabled

It’s time to take my hat off and salute the eminently sensible views of a mother who talks about her two sons. One chronically disabled with severe cerebral palsy, the other fit and well with a perfect school attendance record.

attendance

JJ, left, with his elder brother who has cerebral palsy. (Pic: Rachel Wright).

And that’s where mum, Rachel Wright of Essex in England, put her foot down.

You see, 10-year-old younger son JJ, was to be given an award by his school for perfect attendance. That is, until his mum took to Facebook to explain why her son won’t be accepting the award.

Rachel gave four reasons for the decision:

  • We don’t reward luck. In this family, we will think of as many reasons possible to praise our children. We will celebrate and reward them, but being lucky enough not to get sick is not one of them. He’s lucky to have not developed a fever, had an accident or live with a chronic illness.
  • 100% Attendance Awards can demonise the weakest. In this family, you are not shamed for ill health, vulnerability or weakness. In this house, you are not encouraged to spread germs when you are not well. We look after ourselves and the weakest among us.
  • JJ had no control over his 100% attendance. In this family, you don’t take praise for something you didn’t do. He had no control over his attendance. I took him to school and it would have been my decision to keep him off. I should get the reward (or not) for his attendance.
  • We are taking him out of school for five days at the end of term (with permission from school). In this family, we value school and work but we also know the importance of making memories and having rest. So, our son will finish his school year one week early and go to Italy instead of class parties, watching films and playing end of year games.

Attendance awards send wrong message to children

Rachel said she believes that a reward for good attendance sends the wrong message to children. On Facebook, she wrote: “What on earth are we teaching our kids about value and worth? What are we teaching them about looking out for each other and looking after the sick or disabled in our community?”

As she mentioned in her post, JJ’s brother, who is aged 11, has severe disabilities.

She said: “As the parent of a severely disabled child, I have a strong aversion to rewarding children for not being sick. It is important that as a family we value all people and that sickness does not mean rewards are forfeited. Being sick means you are cared for, not punished. Since our eldest son was born, our values have changed and our perspective altered.”

Rachel has since said she’s planning an alternative event for JJ to have a fun time at a play centre with other kids from his school. And that includes children with and without perfect attendance. The original award would have included an evening at the play centre for JJ.

She has written about her journey as a parent of a child with special needs in her memoir, The Skies I’m Under. She said she hopes her book, blog and recent viral Facebook post will make people think twice about things like attendance awards.

“I hope they consider the ways they view children and adults with disabilities or chronic conditions. I hope that we can have a mature discussion about how we value and need to reward things that children actually have control over determining,” she added.

27,000+ Facebook likes

Up to date, the original post has attracted more than 27,000 likes plus many comments both for and against her stand.

I must admit, awards for good attendance is an issue that I had not previously considered. Having said that, though, she is right. How can it be ok to reward someone for doing something because they are lucky enough to enjoy good health? That is just an insult to people who are sick or disabled – through no fault of their own. An insult to people like JJ’s brother with cerebral palsy, or to people like me with multiple sclerosis.

In fact, it all reminds me of my years spent in the past as an adult leader in the Scouts. Scouts promise to ‘do their best’, and we used that when deciding who was awarded each badge. A more able child would be expected to do more, a less able one would do less. The key was, did we believe that a child had done his or her best?

In the end, isn’t that all we can ask?

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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MS Walk discount for early registration

Every charity associated with any kind of disease, disorder or other health issue always needs to raise money. This may be used for all-important research, much need care, or raising public awareness.

Multiple sclerosis societies in countries all over the world are no different in this respect. Their work all needs money.

The UK’s MS Society is holding one of its major fundraising events, the popular MS Walk, in September. And there is a special offer for anyone who wants to take part.

So, anyone planning to signi up to join the walk should do so by this Wednesday, that’s July 12. That way they can take advantage of a 20% discount on the cost of the registration fees. These are £15 for adults, £7 for under 18s and free for five years and under.

ms walk

Having fun at last year’s MS Walk. (Pic: MS Society).

Helen, of the society’s community and events team, says: “Registration is now open for the annual MS Walk and for one week only, we’ve got a special offer on our sign-up fees! As the offer is only open until the July 12, so you need to be quick to avoid disappointment.”

Furthermore, anyone who wants to walk, roll or stroll, every step will take the society closer to its goal.

Hundreds of MS Superstars, friends and families, will join forces in London to take in the sights and raise funds to stop MS.

Both the MS Walk’s short and medium routes are fully accessible and all three start and finish in Battersea Park. At the end of the challenge the society will celebrate everyone’s achievement with food, drinks, music and fun in the park.

The three routes are:

  • Short / 6km route – Fully accessible
  • Medium / 10km route – Fully accessible
  • Long / 20km route – Please get in touch with the society if you’d like to find out more about the accessibility of this route.

Helen continues: “MS Walk is fun for the whole family. They can walk or wheel one of three picturesque London routes on Sunday September 24.

“Last year, Paralympic swimmer and MS Society Ambassador, Stephanie Millward, walked with us. Stephanie lives with MS, and wasn’t sure about taking part.”

MS Walk ‘believe you can’

Stephanie was made an MBE in the Queen’s New Year’s Honours list. She explains: “When I was asked to attend the MS Walk, I thought ‘Me? Can I do a five, 10 or 20 kilometre walk? No chance. I would never be able to do that.’ But then I thought ‘yes – you can do anything if you believe you can’.”

If you feel inspired to join in the fun and help the MS Society turn the streets of London orange this September, register now.

And don’t forget to sign up by Wednesday to take advantage of the special offer to gain a 20% discount!

To register go to https://www.eventbrite.co.uk/e/ms-walk-2017-registration-34660345025 and use the code MSW20 to get the 20% discount.

After signing up, all participants will receive:

  • An MS Society orange t-shirt
  • An event day pack with detailed maps and information
  • An invitation to a fantastic post-event celebration in Battersea Park
  • Lots of tips and advice from the MS Society team to help them raise as much as they can
  • Support on the day from MS Society staff and volunteers

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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