Government gagging clauses attempt to silence critics

“I don’t believe it” was the catchphrase of Victor Meldrew (pictured right) in the BBCtv sit-com One foot in the grave. It signaled his frustration with elements of life today. However, although feeling equally exasperated as actor Richard Wilson’s character, I really DO believe it.

It is another example of overreach, so typical of UK Conservative governments. But believing it is a long way from accepting it.

It is clearly not acceptable that some 22 charities and companies, that are paid government cash, to have had to sign so-called “gagging clauses”. These are said to prevent them from criticizing the government’s Department for Work and Pensions (DWP), its political bosses, and the new Universal Credit (UC) benefit.

The much-criticised UC is being rolled out across the country to replace six means-tested benefits and tax credits paid to working-age claimants. These are: income-based Employment and Support Allowance, Income Support, income-based Jobseeker’s Allowance, Housing Benefit, Working Tax Credit and Child Tax Credit. These are typically paid to people with disabilities and others who are often seen as vulnerable.

News of the gagging clauses were revealed by investigative journalists at The Times national newspaper, in a report last week. Since then, the remainder of the Press has followed suit.

The gagging clauses amount to a disgraceful and repugnant act of censorship that has no place is a democratic society. And the Press’s calls for the clauses to be removed have now led to a similar demand from the main opposition, the Labour party.

Gagging: Call for Commons statement

Shadow work and pensions secretary Margaret Greenwood.

Labour’s shadow works and pensions secretary Margaret Greenwood has critcised the clauses – and called for them to be removed.

In a letter to the Conservative government work and pension secretary Esther McVey,Ms Greenwood has requested (really, demanded) a statement be made to the House of Commons. A statement that, she says, should explain the reasons for the gagging clauses, as well as announce their immediate removal.

She wrote: “I am asking that you come to the House of Commons to explain the original rationale behind these gagging clauses and to publicly announce that they will be removed by the Government.” The full text of Ms Greenwood’s letter can be read here.

I delayed writing about this, in the hope that the government would make a statement and remove the gagging clauses. But now, it’s halfway through the following week and there has been no response to this demand.

Earlier, the DWP had denied that the organisations were banned from criticising UC and said the clauses protected commercially sensitive information.

At that time, a spokeswoman said: “As with all arrangements like this, they include a reference which enables both parties to understand how to interact with each other and protect their best interests.”

 Yeah, right. That response to media  enquiries fails to address the facts, and ignores the issues involved. As if we accept that. Certainly, the Press and Labour’s Ms Greenwood don’t – and nor should they.

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50shadesofsun.com is the personal site of Ian Franks, a digital journalist and former 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.

Give people with PPMS the treatment they need, MS Society campaign #SpeakupforMS

Blocking of a drug as a treatment for primary progressive multiple sclerosis (PPMS), making it unavailable for use by the UK’s National Health Service (NHS), is being challenged by the country’s MS Society.

And it has coupled its opposition with a call to arms – inviting everyone to #SpeakupforMS.

#SpeakupforMS

Holly (Pic: MS Society).

Holly, from the society’s campaigns community, lives with PPMS. She says: “The first licensed treatment for my condition has been denied approval to be available on the NHS in England and Wales.

#SpeakupforMS“Ocrelizumab (Ocrevus) has proven it can reduce the risk of disability getting worse for people like me with early primary progressive MS.

“But the National Institute for Health and Care Excellence (NICE) has rejected it because it says its (the drug’s) costs are too high for its benefits.

Need to #SpeakupforMS

“We need to speak up together.

“We need to tell Roche, NICE and NHS England: give people with primary progressive MS access to ocrelizumab.”

You can add your voice to the campaign today by signing the MS Society’s petition here

#SpeakupforMSHolly continues: “We‘ve been waiting a lifetime for an effective treatment for primary progressive MS. This decision is crucial.

“Right now, this is just for approval in England and Wales, but any delay in making ocrelizumab available could have knock-on effects across the UK.”

According to the society, every year around 600 people are diagnosed with primary progressive MS in the UK. 

Holly asks for your suppport.

She says: “Join us and #SpeakUpforMS.”

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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.

Now Ocrevus blocked from health service in Scotland

Hot on the heels of NICE rejecting Ocrevus (ocrelizumab) as a treatment of PPMS by the National Health Service (NHS) in England, it has been blocked as a therapy for relapsing MS in Scotland.

The Scottish Medicines Consortium (SMC) says it does not consider ocrelizumab to be cost effective for the NHS in Scotland  as a treatment for relapsing MS in comparison to the existing disease modifying drugs. The SMC states that Roche, parHot on the heels of NICE rejecting Ocrevus (ocrelizumab) as a treatment of PPMS by the National Health Service (NHS) in England, it has been blocked as a therapy for relapsing MS in Scotland.ent company of Genentech – the manufacturer of the drug, did not present a sufficiently robust economic assessment of the drug’s use for it to be accepted. 

MS organisations in the UK have been quick to react. The MS Trust issued a statement that it is very disappointed in the SMC’s decision.

It added: “We anticipate that Roche will continue to work with the SMC with the aim of changing this initial decision. We also understand that the SMC submission for ocrelizumab for primary progressive MS has been withdrawn.”

Ocrevus first to slow PPMS progress

ocrevusMS Trust’s director of development, Jo Sopala, said: “We are very concerned at the continuing delay for people with MS to access ocrelizumab in Scotland.  For people with relapsing MS, it expands the range of MS treatments by offering a different dosing schedule, a different mode of action, minimal monitoring and a low risk of side effects compared to existing disease modifying drugs. 

“In primary progressive MS, ocrelizumab is the first treatment which has been shown to slow down progression.  We will continue to make the strongest possible case for NHS Scotland approval of ocrelizumab for both relapsing and primary progressive MS. 

Certainly, all is not lost as NICE initially made the same decision, for the same reason, about the use of Ocrevus to treat relapsing MS in England. Then, last month, after some negotiations on price, recommended its use. Now it has blocked its use for treating PPMS.

Now, we can look forward to further negotiations which I am sure will lead to the eventual approval of Ocrevus by NICE and SMC – for both types of 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 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.

Ocrevus blocked again, this time for PPMS, as not cost-effective

 

So, news came out last week that the UK’s National Health Service will not be providing Ocrevus for treating primary progressive MS (PPMS) in England*. But, panic not, the decision is far from being set in stone.

ocrevusWhy is this? Because the decision by the National Institute for Health and Care Excellence, (NICE), was that Genentech’s Ocrevus (ocrelizumab) did not meet its “value for money” criteria as a PPMS treatment. This was despite the fact that NICE’s evaluation committee agreed it is a “step change” for these patients.

The thing is that NICE has a history of reversing initial decisions, once it negotiates a lower purchasing price that makes the drug cost-effective.

Only last month, NICE reversed an earlier decision regarding relapsing-remitting MS (RRMS) patients, and recommended Ocrevus be included in the NHS.

The decision was made after Genentech negotiated with NICE and reached agreement on an undisclosed price for the infusion treatment, which apparently sells in the US at an estimated annual list price of $65,000.

That’s exactly what I expect to happen this time.

A cynic (who me?) might suggest that NICE has made its two decisions to oppose the use of Ocrevus purely to obtain the drug at a lower price.

* Decisions about the availability of drugs for the other parts of the UK, namely Scotland, Wales and Northern Ireland, are made by different organisations.

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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.

Disability benefits: Questions remain over timing and complexity

Why, oh why, oh why? This was the title of a hit song (well in the UK anyway) performed by Gilbert O’Sullivan in 1973, but now represents three questions to which we need answers. And by that, I am talking about meaningful answers from a government department responsible for benefits for the sick and disabled.

The UK government´s Department for Work and Pensions (DWP) has much to explain.

benefits

Photo: The Independent

In January, the DWP admitted defeat in its attempts to change the law to make it harder for claimants who experience psychological distress.

But, that was so long ago, so…

Why?

Why has the DWP taken five months to publish its updated guidance for benefits assessors in relation to PersonaI Independence Payment (PIP) and the Planning and following journeys activity.

And, what changes has this updated guidance brought forward? Well, in truth, not a lot.

Benefits and Work’s newsletter explains: “A new paragraph has been added to the guidance for descriptors c), d) and f). 

“These were the descriptors which had the words ‘For reasons other than psychological distress’ unlawfully added to them in March 2017 and which have had to be changed back to their original wording. There have been several other small changes.”

Such minimal changes should not have taken five months to produce the revised guidance. It is ridiculous.

Oh, why?

At the same time, changes have been made to the guidance given to PIP decision makers. Thes address the issue of safety and supervision when planning and carrying out a journey.

But, why have decision makers have been told that claimants who need time to recover after a seizure may not score any points for this in relation to daily living?

This time, the new guidance was prompted by the DWP losing a separate court case. The court ruled that the DWP was wrong to insist that a claimant could only score points for being unsafe if harm was likely to occur on more than 50% of the occasions on which they attempted an activity.

Benefits and Work said: “Instead, the court decided that the decision maker should look at whether there is a real possibility that harm might occur and also at how great the harm might be. The greater the potential harm, the less likely it needs to be that it would happen on any specific occasion.”

Although decision makers have been told that claimants may not score any points for the need for recovery time in relation to daily living, they may score points because they may not be safe outdoors whilst recovering. 

Oh why?

Just why can a claimant, who now qualifies for PIP, not have the original decision to decline the benefit reversed?

This is an example of just such a case, that was given in a lengthy DWP memo for decision makers. This covers changes to guidance on the mobility component, and gives some details of the exercise which has begun looking again at over 1.6 million PIP claims.

The memo explains that, depending on when they were made, some claims will need three different decisions making on them:

  • The first decision will be for the period before the DWP lost a case known as MH, which dealt with the mobility component and psychological distress.
  • The second decision will be from the date when MH applied, 28.11.16.
  • The third decision will be from the date when a decision known as RJ, which deals with safety and supervision, also applied, 09.03.17

Confused? It is complex and may result in more mistakes.

But, what of the example I mentioned? It reads:

“A claim to PIP was made on 4.1.17 (January 4). The DM decided on 1.3.17 (March 1) that the claimant is not entitled to PIP. The claimant applies for MR (mandatory reconsideration) in the light of RJ. The DM looks at the case again and decides that RJ applies. However, the original decision to disallow the claim cannot be superseded on the grounds of error of law because it predates the decision in RJ. Therefore, the DM should give a decision refusing to revise for official error and the claimant should be advised to make a new claim.”

The DWP message is that some claimants who did not get an award but are now eligible will have to make a fresh claim.

Of course, we know that not everyone affected will bother to make a new claim – and others may not realise that they have to claim again to get the PIP to which they are entitled.

When the DWP said it would review 1.6m PIP applications, it didn’t say that it would make life even more difficult for claimants.

Why, oh why, oh why cannot life be made easier?

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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 minister’s welfare benefits statements prove economical with the truth

Sarah Newton, one of two ministers of state at the department for work and pensions (DWP), was in the centre of a heated debate in the House of Commons, this week.

The Canary, a website dedicated to independent campaigning journalism, reported that she made some staggering claims. It went on to question how many of them were true. Those of us with disabilities, resulting from MS and other causes, know that the answer will be ‘very few´.

The debate was about a report by the UN committee on the Rights of Persons with Disabilities (UNCRPD). The report said successive UK governments had committed “grave” and “systematic” violations of disabled people’s human rights. The chair of the committee said the government had created a “human catastrophe” for disabled people.

newton

Sarah Newton MP.

In the debate, Labour accused Newton and the government of making disabled people a “forgotten class”; of allowing the DWP to ‘endlessly mistreat’ them, and of creating a “national scandal”.

Newton dismissed Labour’s assertions. She said: “Let’s actually deal with the facts of the situation, and stop this really quite irresponsible talk that we hear in the chamber today…”

But, it seems that Newton and “the facts” don’t go hand in hand. No surprise that DWP politicians are always ready to brush unpleasant, but genuine, facts under the carpet. They are past masters of spouting their own version of the “truth”.

The Canary went through her comments and fact-checked them. Of course, it found that Newton statements were, to put it politely, economical with the truth.

Time to check the genuine facts

So, let’s look at the real truth!

CLAIM: Newton: “I utterly refute the allegations that have been made today: that we are discriminating against disabled people; that we are systematically undermining and violating their human rights, or worst of all that we are targeting their… welfare support…”

FACT: The High Court ruled in December 2017 that aspects of the Personal Independence Payment rules were “blatantly discriminatory”. It then ruled again on June 14 that aspects of Universal Credit’s implementation had been ‘discriminatory’.

Additionally, a tribunal found the DWP had discriminated against one of its own workers, who was disabled, awarding him £26,000 in damages.

The Canary also pointed out that besides the UNCRPD, the UK government has been accused of breaking international treaties and violating disabled people’s rights by the UN Human Rigth Committee on Economic, Social and Cultural Affairs and the European Committee of Social Rights (part of the Council of Europe).

Meanwhile, the UNCRPD report said government policies had become “life-threatening to many disabled people”.

CLAIM: Newton said that the government was “very disappointed” that the UNCRPD did not take on board… the evidence that the government gave them. They did not acknowledge the full range of support.

FACT: The UNCRPD report was overarching in the evidence it took on board. However, it condemned the UK government’s attempts to misrepresent the impact of policies through “unanswered questions”, “misused statistics”, and a “smoke screen of statements”.

Equality Act fails disabled people

CLAIM: Newton said:I want to reassure everyone that we have very strong legislation… on our statute book to protect disabled people – that’s through the public sector equality duty in the Equality Act 2010…”

FACT: Just one example of the implementation of the Equality Act 2010 failing disabled people is the UK rail network. Disabled people’s organisations, trade unions, and commuter groups have argued that the train operator’s policies breach the act. Their claims have been largely ignored.

Newton then had to answer a question from Labour’s shadow secretary for work and pensions, Debbie Abrahams. Abrahams asked why the government had not done a cumulative impact assessment of all welfare reforms.

CLAIM: Newton said: “We do undertake a cumulative assessment of reforms, each fiscal event. This is because we want to be as transparent as possible regarding the cumulative distributional impacts of government policies, including welfare reforms, tax changes – direct and indirect – and public spending changes.”

FACT: This is not the same as doing an impact assessment of the combined effect of every cut, reform, and change on disabled people. The government is merely giving itself individual snapshots.

Poverty level  figures not all they seem

CLAIM: Newton said that the proportion of people in a family where someone is disabled… in relative poverty has not risen since 2010.

And that the proportion of people in a family where someone is disabled, who are in absolute poverty, is at a record low…

FACT: The government admits that changes it made around 2011, to how disabled people are identified, could affect poverty measures. Also, the government does not include in its poverty figures the average additional £570 a month costs disabled people face because of their impairments. Moreover, the government’s measure for absolute poverty is different to that of the UN, and different again to a measure the House of Commons Library used in a briefing paper.

Newton’s claim of no rise in poverty is even different to the DWP’s own figures, which show the number of disabled people in relative poverty has risen since 2010 [source: the Joseph Rowntree Foundation].

CLAIM: Newton said: “These allegations, that we are driving people to the food banks and forcing people into destitution, is simply an irresponsible statement.

FACT: The government’s National Audit Office says Universal Credit is driving people to food banks and throwing them into rent arrears.

CLAIM: Newton said: “We’re spending over £50bn a year on benefits to support disabled people and people with health conditions.”

FACT: The amount the government spends on disability benefits is actually £39bn. Full Fact says the £50bn figure is from 2012, and includes adult social care, free travel, and home adaptations

UK actually fifth in G7, not second

CLAIM: Newton said that the £50bn was: “up by £7bn since 2010, and it’s around 2.5% of GDP – over 6% of the government’s spending. Now as a share of our GDP, our public spending on disability and incapacity is the second highest in the G7…”

FACT: This is a selective use of statistics, as it also includes some NHS spending. The Office for National Statistics reported on EU “social protection” figures. The UK actually spends less than Norway, Germany, Spain and France on disability benefits.

CLAIM: Newton said: “There is no freeze on the benefits that people with disabilities have received…”

FACT: Tax-free disability benefits like the Personal Independence Payment (PIP) have been rising. But the “work-related activity” part of Employment and Support Allowance has been frozen since 2015. 391,000 people, many of them sick and disabled, are in this group.

CLAIM: In closing Newton summed up by accusing Labour and the Scottish Nationalist Party (SNP) of fearmongering and not dealing in facts.

She said: Who’s going to suffer? Who’s going to suffer from what… we’ve been hearing from the opposition today?

FACT: It is going to be disabled people and their families, who are going to be frightened – frightened to come forward and get the benefits that are there for them; frightened to come forward and get the support that’s available to them.

The Canary said: “Newton either displayed staggering delusional behaviour or wilful ignorance.” I agree but would describe both as shameful. Worse, the same descriptions can be applied equally to the government as a whole.

Interestingly, but unsurprisingly, The Canary says it contacted the DWP for comment but received no response by the time of publication.

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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.

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.

* * * * *

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