Invest more in innovation and development say wheelchair users in international study

Millions of people have lower-limb paralysis – the most common causes being strokes, spinal cord injury and multiple sclerosis.

Now, users of wheelchairs and other devices to assist lower limb mobility say they need more money to be invested in innovation and development. And, as a wheelchair user, I agree totally.

innovationThis is the result of an international study of wheelchair users across the UK, USA, Japan, Brazil and India. It was carried out by ComRes on behalf of the Toyota Mobility Foundation.

Key findings include:

     Nine out of 10 (89%) wheelchair users experience pain as a result of their mobility device;

       Nearly a quarter (23%) say they have been declined entry to public transport because of their mobility device;

       43% say they have been unable to find an accessible toilet when they needed one;

        30% of say they have felt frustrated because the design of their mobility device felt outdated.

The study also found that wheelchair users experience repetitive strain injury (RSI) and pressure sores (29% and 22% say this respectively).  

The survey found that nearly a third (30%) of wheelchair users say they have felt frustrated because they design of their mobility device feels outdated.  The top five improvements that would be most helpful to them, they say, are to enable them to:

      move around faster (41%);

        perform regular day-to-day tasks more easily (37%);

        feel more relaxed & comfortable with a device that feels more natural and like an extension of themselves (37%);

        feel more confident and able to socialise and meet with friends (34%);

        feel a sense of spontaneity, freedom and independence (32%).

Innovation: Where we go from here

People with lower-limb paralysis are now being encouraged to take part in a global conversation about the types of mobility technology innovations they would like to see, using the hashtag #MyMobilityUnlimited.  

Toyota Mobility Foundation’s director of programs Ryan Klem said: “This research expresses the urgent need for innovation in this area. It’s surprising that with all the technology we have today, we still have people in constant pain as a result of their mobility devices. The comments we are receiving through social media show the kinds of developments that people want to see, and we hope the Challenge will result in genuinely life-changing technologies.”

Nesta Challenge Prize Centre’s Charlotte Macken commented: “While the focus of this Challenge is lower-limb paralysis, we absolutely do expect that the technology developed as a result will be transferable and have the potential to improve the lives of a much wider group of people. This Challenge is about achieving impact, and for that reason, we needed to narrow the focus. However, we recognise that people have a wide range of mobility needs and hope to be able to help them too.”

For more information please visit mobilityunlimited.org

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stat

Government withdraws disability benefit legal appeals, at last

A government disability benefits boss has withdrawn another two legal appeals which now opens the door for more claimants to receive the benefits to which they are entitled.

withdrawn

Esther McVey, work and pensions secretary.

The appeals, by the UK’s Department for Work and Pensions (DWP), were withdrawn by the department’s secretary of state Esther McVey MP. Previously, she cancelled plans to challenge a legal judgment, prompting a major review of thousands of decisions about disability benefits cases.

Now, the DWP is once again on the back foot – and claimants are set to reap the benefit.

The department had appealed to the Upper Tribunal and the Court of Appeal after the First-Tier Tribunal ruled that two claimants with chronic conditions were entitled to the Personal Independence Payment (PIP). Ms McVey has now withdrawn both appeals.

Barrister Tom Royston, of Garden Chambers North, represented both the claimants. Since Ms McVey withdrew the appeals, Mr Royston has issued a damning analysis of the cases.

He criticises successive Work and Pensions secretaries for trying to enact and enforce a major change in the law without parliamentary approval.

Appeals cause unacceptable wait for justice

Further, from the dates the now-withdrawn appeals were lodged, the DWP has forced disabled people to wait for a final decision. That’s a wait of two years in one case, and three years in the other.

I can understand that nothing could be done while legal action, the appeals, were pending. But why has it taken so long to withdraw them? One was due to be heard this month. It’s crazy. It’s an unacceptable wait for justice.

Online campaigning journalist Mike Sivier, writing on Vox Political website, said: “Ms McVey, and successive Work and Pensions secretaries before her, has been gambling that her victims – yes, victims; and I think even that is too mild a word – would run out of stamina and let her have her way. It is a classic bullying tactic.”

I agree. The DWP should be ashamed of its actions. Esther McVey should be ashamed she took so long to withdraw the appeals. Prime minister Theresa May and her government should be ashamed of presiding over such a farce.

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Government department’s “no information” claim is just a feeble cover-up

A government department responsible for disability benefits has effectively admitted that vital documents were not shown to an expert hired to conduct a review. The papers link its controversial ‘fitness to work’ test with deaths of benefit claimants.

The UK’s Department for Work and Pensions (DWP) claims it has no information about whether the reviewer was shown copies of peer reviews and two prevention of death reports. Of course, if they had been given to the reviewer, the action would have been noted.

no informationIts “The information is not held” response to a Freedom of Information request, I contend, is an admission of guilt. Those of us who have personal experience of the DWP simply won’t be convinced that it is telling the truth. We see it for what it is, a feeble attempt at a cover-up.

Actions are always recorded but any lack of action isn’t – as there is nothing to note. Therefore, ‘no information’ means the documents were NOT shown to the reviewer. And that is unforgiveable.

The FOI request was submitted by the Disability News Service. Its full story can be read here.

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Charity AIMS to help MS patients to have HSCT

A new multiple sclerosis charity has appeared in the UK, inspired by one successful HSCT treatment, provided free of charge by the country’s National Health Service (NHS). It is the first charity dedicated to autologous hematopoietic stem cell transplantation (HSCT) for MS patients living in the UK.

The treatment was given to James Coates two years ago. His story can be read here.

AIMS

Alison and James Coates.

James and his wife Alison are now behind the launch of the AIMS (Auto Immune and Multiple Sclerosis) charity.

Alison explains: “James was lucky enough to access HSCT on the NHS, and we wanted to give something back. We were also very frustrated at reports of misinformation given to patients by their neurologists and other MS agencies.

“Such misinformation includes a much higher mortality rate than is accurate, and that HSCT wouldn’t be suitable for them because they have progressive MS. In fact, HSCT halts progression in the overwhelming majority of patients irrespective of MS type. There are also general inaccuracies about the criteria for NHS acceptance – and that’s still happening every day.

“We wanted to do something to put the record straight and all our trustees feel very strongly about that,” she said.
AIMS itself received confirmation of its registered charity status on April 11 this year (registered chatity 1177907). Its primary objective is to signpost to qualified medical specialists during the patient’s research phase, with a view to providing grants as its funding income is developed.

Alison says: “Essentially, AIMS intends to signpost for other hematologically-routed AI diseases (ie: CIPD, Lupus and Systemic Scleroderma) as these conditions, in addition to MS, are treated with HSCT at Clinica Ruiz in Puebla, Mexico, and AA Maximov hospital in Moscow, Russia. Further recommended clinics may be added later.

Main focus on MS

“Our main focus is on multiple sclerosis patients. We plan to offer both financial support AND signposting to UK-based MS patients who are accepted for HSCT in the UK or at either of the above facilities, as MS is the disease that is currently treated within the UK on the NHS.”

Every charity has to have trustees and, for AIMS, those trustees rightly include both James and Alison. But the couple’s involvement doesn’t stop there. James heads the charity’s finance team, while Alison leads the publc relations and media team.

On December 1, AIMS charity will be holding its first major fundraiser – a super black-tie dinner, with entertainment. It will be selling tables of 8 and 10 for an event that will double as its ‘launch party. I know your support will be very much appreciated, so check out the charity’s Facebook page at https://www.facebook.com/aimscharity.org/.

James says: “We have run smaller fundraisers – our Trustee Paddy has participated in Tough Mudder for us, and we’ve received a number of donations – the December 1 dinner will be our first big event.
“We are hoping to raise upward of £50,000 annually, which would help many people to access HSCT and support them in terms of their travel expenses.”.

Looking to the future, AIMS proposes to support the travel expenses of UK-based MS patients. Initially, they must have been accepted for HSCT treatment in the UK, Clinica Ruiz in Puebla, Mexico and AA Maximov hospital in Moscow, Russia.

AIMS is quite clear that it will only give grants towards travel costs and funding will only be allocated to patients who have secured a place at a qualifying facility. It will not contribute towards the treatment itself.

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Zinbryta risks outweigh benefits, European report

Multiple sclerosis treatment Zinbryta was withdrawn in March and now a review by the European Medicines Agency has found its risks outweigh its benefits.

The review confirms the drug’s association with the risk of developing severe and potentially fatal immune reactions in the brain, liver and other organs. It was carried out by to the European Medicines Agency‘s (EMA)’s Pharmacovigilance Risk Assessment Committee (PRAC).

zinbrytaIn March, when I reported that the drug had been withdrawn, I questioned the due diligence of the approval process.

EMA says that 12 cases of inflammatory brain disorders worldwide were potentially related to the medication’s use. Further, encephalitis and meningoencephalitis, or inflammation of the membranes enveloping the brain and spinal cord, resulted in three deaths.

Zinbryta is no longer available through European pharmacies and hospitals but the EMA recommends healthcare professionals to monitor patients who were treated with Zinbryta.

The EMA says: “Patients could be at risk from the start of treatment and for several months after stopping treatment, and it is not possible to predict which patients will be affected. The PRAC therefore confirmed its previous conclusions that risks of Zinbryta outweigh its benefits for patients with multiple sclerosis.”

Biogen and Abbie are working closely with the US Food and Drug Administration (FDA) for the withdrawal of Zinbryta in the US, according to Zinbryta’s website.

Anyone who takes Zinbryta is advised to contact their healthcare professionals and discuss a new treatment strategy.

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Benefit sanctions ineffective, independent study

A new study confirms what we already knew – sanctions against benefit claimants just don’t work. It says they trigger negative outcomes.

Sanctions are already discredited. They are imposed by the Department for Work and Pensions (DWP) with the somewhat dubious aim of getting jobless and people with disabilities into work.

However, a long-term study by university researchers, the UK’s most extensive study of welfare conditionality, says the sanctions are ineffective. In fact, it says that sanctions are more likely to reduce those affected to poverty, ill-health or even survival crime.

British national daily newspaper The Guardian reported that the five-year exercise, that tracked hundreds of claimants, concludes that the controversial policy of docking benefits as punishment for alleged failures to comply with jobcentre rules has been little short of disastrous.

sanctions

Patrick Butler (Pic: The Guardian).

The paper’s social policy editor Patrick Butler wrote:

“Benefit sanctions do little to enhance people’s motivation to prepare for, seek or enter paid work. They routinely trigger profoundly negative personal, financial, health and behavioural outcomes,” the study concludes.

Despite claims by ministers in recent years that rigorously enforced conditionality – including mandatory 35-hour job searches –  incentivised claimants to move off benefits into work, the study found the positive impact was negligible.

It calls for a review of the use of sanctions, including an immediate moratorium on benefit sanctions for disabled people who are disproportionately affected, together with an urgent “rebalancing” of the social security system to focus less on compliance and more on helping claimants into work.

In the “rare” cases where claimants did move off benefits into sustained work, researchers found that personalised job support, not sanctions, was the key factor. With few exceptions, however, jobcentres were more focused on enforcing benefit rules rather than helping people get jobs, the study found.

Poor quality and ineffective

“Although some examples of good practice are evident, much of the mandatory job search, training and employment support offered by Jobcentre Plus and external providers is too generic, of poor quality and largely ineffective in enabling people to enter and sustain paid work,” it says.

For those people interviewed for the study who did obtain work, the most common outcome was a series of short-term, insecure jobs, interspersed with periods of unemployment, rather than a shift into sustained, well-paid work

Sanctions generally delivered poor outcomes, including debt, poverty and reliance on charities such as food banks, the study found. Often imposed for trivial and seemingly cruel reasons, they frequently triggered high levels of stress, anxiety and depression.

sanctions

Prof Peter Dwyer (Pic: University of York).

“The outcomes from sanctions are almost universally negative,” said the director of the study, Prof Peter Dwyer of the University of York.

The study found that, in many cases, the threat of sanctions had the unintended effect of encouraging a “culture of counterproductive compliance and futile behavior” among some claimants, who learned “the rules of the game” rather than becoming genuinely engaged with work.

Claimants with chaotic lives – who were homeless or had addictions, for example – reacted to the “inherent hassle” of the conditionality system by dropping out of the social security system altogether. In some cases, they moved into survival crime, such as drug dealing.

Low-paid workers on universal credit who were subject to so-called “in-work conditionality” – a requirement for them to work more hours or face sanctions – in some cases elected to sign off, foregoing rent support and tax credits, to avoid what they saw as constant, petty harassment from jobcentre staff.

Sanctions are effectively fines

Welfare conditionality – the notion that eligibility for benefits and services should be linked to claimants’ compliance with certain rules and behaviours – has been progressively embedded into the UK social security system since the 1990s, although the scope and severity intensified dramatically after 2012.

Sanctions are imposed when claimants supposedly breach jobcentre rules, typically by failing to turn up for appointments or applying for enough jobs. They are effectively fined by having their benefit payments stopped for a minimum of four weeks (about £300) and a maximum of three years.

At its peak in 2013, under the then secretary of state for work and pensions, Iain Duncan Smith, there were more than a million sanctions. Between 2010 and 2015, a quarter of all people on jobseeker’s allowance were sanctioned, with the Department for Work and Pensions (DWP) issuing £132m in sanctions penalties in 2015.

Sanctions fell to 350,000 in 2016 as a series of critical reports emerged questioning their effectiveness and calling for changes, including from the all-party work and pensions select committee, the DWP’s social security advisory committee and the National Audit Office. A fresh inquiry by MPs into sanctions is under way.

The Economic and Social Research Council-funded welfare conditionality study was carried out between 2013 and 2018 by researchers at six universities. It included repeat qualitative interviews over two years with 481 welfare service users in England and Scotland as well as interviews with 57 policy experts and 27 focus groups.

Need support instead of sanctions

sanctions

Dalia Ben-Galim (Pic: Gingerbread).

Dalia Ben-Galim, the policy director at the single parents’ charity Gingerbread, said: “Rather than threatening single parents with sanctions and widening the ‘conditionality’ agenda, it would be much more valuable to enable the conditions to support employment such as affordable childcare, access to flexible work and personalised support through job centres.”

A DWP spokesperson said: “Our research shows that over 70% of JSA claimants say sanctions make it more likely they will comply with reasonable and agreed requirements, and it is understandable that people meet certain expectations in return for benefits.

“We tailor requirements to individual cases and sanctions are only used in a very small percentage of cases when people fail to meet their agreed requirements set out in their claimant commitment.”

sanctions

Margaret Greenwood (Pic: Liverpool Echo).

Labour’s shadow secretary for work and pensions Margaret Greenwood said: “The current sanctions system is immoral and ineffective. It is not helping people into employment and at the same time is leaving vulnerable people on the brink of destitution, without any source of income for long periods.”

All in all, I believe that benefit sanctions have no place in any modern caring society. The trouble is, regrettably, the UK government and its widely-disrespected DWP cannot be described as caring.

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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 freelance medical writer and editor for various health information sites. 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.

* * * * *

Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Threat to three DMTs removed after manufacturers cut prices

Manufacturers of three relapsing multiple sclerosis drugs have cut prices to remain available to Britain’s National Health Service (NHS). They are all diseases modifying therapies (DMTs).

In January, I brought you news that five such drugs were under threat, having been found to be not cost-effective as long-term therapy options. In a draft recommendation from the National Institute for Health and Care Excellence (NICE). NICE’s role is to provide national guidance and advice to improve health and social care. The NHS in England is legally obliged to fund medicines recommended by NICE, while other parts of the UK have their own approval procedures.

cut pricesIn that draft recommendation, only Extavia (interferon beta 1b) was given the green light. Now, though, the cut prices mean that three more drugs are considered cost-effective. These are:

Although details of the cut prices have not been disclosed, I am delighted that the drugs will now continue to be available to those that need them.

The two medications that NICE is still, as yet, proposing to make unavailable to people who are newly diagnosed, or want to change their treatments, are:

  • Betaferon (interferon beta-1b)
  • Plegridy (peginterferon beta-1a)

Grateful for cut prices

cut prices

Meindert Boysen (Pic: NICE),

NICE director of the centre for health technology evaluation, Meindert Boysen, said: “This is good news for people with relapsing-remitting multiple sclerosis. We are grateful that the companies have been able to agree reductions to the NHS prices of these drugs so they can be made routinely available and ensure that people continue to benefit from a choice of treatment.

“Multiple sclerosis is lifelong condition that can have a negative impact on people’s ability to work, and to engage in social and family life. Having treatments that can delay the progression of the disease is important to help patients get back to their normal lives.”

MS Society head of policy, Phillip Anderson, welcomed NICE’s latest position. He said: “People with MS told us what restricted drug options would mean for them and we’re delighted NICE has listened.

“This decision means people can continue to access a wide range of MS treatments. It’s vital that individuals have that choice, so they can find what best suits their needs and lifestyles.

“This is a great outcome and we’ll keep working to make sure everyone with MS can get the right treatment at the right time.”

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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 freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.