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News and Opinions about MS, Health & Disability

Care cuts put those in need at risk

Vulnerable people are at risk because social work budgets cuts make it impossible to prepare meaningful care packages. And that is besides cuts to the government’s welfare benefits.

It’s the job of social workers to assess what support someone needs to keep them safe and able to live independently. Community Care magazine and the Care and Support Alliance, of which the MS Society is a member, surveyed social workers. The survey asked about the challenges they face trying to get people the care they need.

social workersIn response, the social workers criticised the devastating impact cuts are having on people who rely on care and support.

Almost 500 UK social workers took part in the survey. Their comments reveal the incredibly difficult position they’re often in, as they increasingly have to restrict or remove care entirely. What’s more, that is due solely to lack of resources, as local councils struggle to balance their budgets.

One social worker said: “[There is] strong pressure from my line manager and commissioners to reduce costs as a main priority.”

Meanwhile, another commented: “Colleagues constantly battle to keep packages at an adequate level to support clients.”

Social workers tell of appalling cuts in care

Their descriptions of what cuts can mean in practice to people who need care were appalling:

One wrote: “A person with hoarding issues and a tendency to eat rotten food had their shopping and housework call cut, resulting in an admission to hospital with food poisoning.”

Another response said: “The person requires support with walking to the bathroom, but due to the cost he is now required to contribute towards it. [Instead,] he has decided he would rather have the risk of falling than [pay for] an evening call.”

MS Society chief executive Michelle Mitchell, said: “This report lays bare the realities social workers face thanks to a system that hasn’t been properly funded for decades. Our own research shows that too many people with MS are bearing the brunt of cuts. One in three [are] not getting support with essential everyday tasks.

“The government has promised to improve the social care system and additional funding and reform has to come quickly. People who desperately rely on care shouldn’t be forced to keep paying the price.”

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. 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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Link between low levels of Vitamin D and risk of MS ever stronger

A new study has underlined the value of vitamin D in the fight against multiple sclerosis.

People with low levels of vitamin D are at greater risk than others of developing MS, a new study shows.

The study looked at stored blood samples of 800,000 pregnant Finnish women.

vitamin dVitamin levels of 1,092 women, who were later diagnosed with MS, were compared to those of 2,123 women around the same age and region who did not develop the disease. The women who went on to develop MS had lower average vitamin D levels than other women.

The study, titled “25-Hydroxyvitamin D deficiency and risk of MS among women in the Finnish Maternity Cohort”, was published last week in Neurology, the official journal of the American Academy of Neurology.

According to the USA’s National MS Society website:

Researchers believe that several genetic and environmental factors influence whether a person will get MS. These factors may also impact the severity of the disease.

Scientists are eager to find risk factors for MS that can be modified to possibly prevent MS and reduce disease activity. Research is increasingly pointing to reduced levels of vitamin D in the blood as a risk factor for developing MS. Studies are underway to determine if vitamin D levels influence MS disease activity.

Increased vitamin D equals lower risk of MS

The team found that overall as vitamin D levels increased, the risk of later developing MS decreased. Women with the greatest deficiency in vitamin D had a twofold increase in the risk of developing MS. And those with the highest vitamin D levels had the lowest risk of a later MS diagnosis.

Most of the women in the study were considered to have deficient or insufficient levels of vitamin D. Of the women who developed MS, 58 percent had deficient levels of vitamin D, compared to 52 percent of the women who did not develop the disease. The researchers conclude that the results directly support vitamin D deficiency as a risk factor for MS and that correcting this among reproductive age women may reduce their future risk of developing MS.

As we who have MS wait impatiently to find a cure, we welcome every new study with good news of one kind or another.

We must greet all such studies as successful steps along the journey to defeat this insidious disease.

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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 Clinical Writer with Healthline, the fastest growing health information site. 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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HSCT is superior to DMTs say Swedish researchers

At last, independent researchers have endorsed autologous hematopoietic stem cell tranplantation (HSCT) as a treatment of choice for multiple sclerosis.

Well, treatment for relapsing MS, anyway.

The study “Autologous haematopoietic stem cell transplantation for neurological diseases” was published in the Journal of Neurology, Neurosurgery & Psychiatry. In it, Swedish researchers, from Uppsala University, say autologous HSCT is superior to currently approved disease modifying therapies (DMTs).

hsctOn top of that, they say, in the study, that procedure’s safety profile has improved, and is now just as good as approved medications.

So far, so good. But, from my point of view, it is only a start. The report says that the benefits of stem cell transplants for patients with progressive MS is moderate at best.

I don’t agree with the suggestion that attempts to use HSCT to treat people with progressive MS should be limited to clinical trials. The treatment is more effective with the relapsing form, but it is also successful in tackling the progressive types.

Now, we need HSCT to be approved for treating MS by the FDA and regulatory bodies around the world. We have been waiting long enough.

No evidence of disease activity (NEDA) is now a serious indicator in studies of MS therapies. It is a comprehensive measure that takes into account disease activity in MRI scans, the presence of relapses and disability progression.

HSCT scores better at NEDA

A number of studies showed that 68 to 70 percent of patients maintained NEDA four to five years after HSCT. In comparison, of DMT patients treated at Boston’s Brigham and Women’s Hospital, only 7.9 percent had NEDA at seven years.

Meanwhile, in clinical trials of newer drugs such as Tysabri (natalizumab) or Lemtrada (alemtuzumab), only 32 to 39 percent of patients maintained NEDA at two years.

Researchers noted that clinical trials or other studies of Tysabri or Tecfidera (dimethyl fumarate) found no improvements in patients’ health-related quality of life.

Meanwhile, one study of transplanted MS patients showed an improvement of nearly four times what is considered as a clinically meaningful improvement at two years. Improvements were in both physical and mental health.

So, HCST:

  • is superior to DMTs
  • is as safe as DMTs
  • achieves ‘no evidence of disease activity’ with more people and for longer than other therapies

What more do we need to know?

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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 Clinical Writer with Healthline, the fastest growing health information site. 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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Department helpline worker lambasts mismanaged disability benefits system

Once again, we have a story of government mishandling of disability benefits and allegations of the existence of targets. Targets that don’t officially exist, as if we believe that.

dwp

Photo: The Independent.

A Department for Work and Pensions (DWP) insider has described to the Disability News Service (DNS) that a “mismanaged” and under-funded social security system is leaving many disability benefit claimants penniless and helpless. And those claimants include people with MS and other disabilities.

George (name changed to protect his anonymity) works on DWP’s employment and support allowance (ESA) helpline. He told DNS that the experience has left him shocked and frustrated at the deeply flawed system.

Also, he says he believes – although he does not have direct evidence of this – that DWP decision-makers do have targets for the proportion of claimants that they need to find “fit for work”, and so ineligible for ESA.

DWP decision-maker ‘hates job’

Additionally, George claimed that a colleague in another part of DWP, who actually works with a decision-maker, told him that the decision-maker hates his job. This is because he must “disallow people” and was “struggling to hit his disallowance targets”.

DNS has been unable to verify this claim, but disabled activists have been warning for years that they believe DWP decision-makers, and the healthcare professionals who work for the government contractor Maximus, are set targets for the proportion of claimants they must find fit for work.

DWP has continued to deny imposing any such targets and no-one has been able to provide strong evidence that they exist. Even George says he believes such targets do exist, although he cannot prove it.

“I think decision-makers are trying to meet targets,” he told DNS.

No disparaging story about the DWP’s management, or mismanagement, will ever surprise me. I hope you feel the same way.

Read Disability News Service’s full report 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 Clinical Writer with Healthline, the fastest growing health information site. 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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Impact of MS on life need not always be negative

MS does impact my life. That may seem to be an obvious statement but let’s look a little deeper. There is more to this than meets the eye.

Yes, of course, this disease has many negative impacts on me, my life and my loving wife Lisa. But not every impact is necessarily negative. What? I hear you ask, have I found some ways in which MS has had a positive effect?

The answer has to be ‘yes’, no doubt about that.

Naturally, I can only talk about myself and not everyone’s experience will be the same. But, hey, that is multiple sclerosis – where no two people have exactly the same symptoms.

My symptoms mainly impact my mobility and balance so, outdoors, I need mobility aids. I use a rollator (basically a walker on wheels with brakes and a seat on which to rest) for short distances and a wheelchair for anything longer. I also have to cope with urinary urgency and continence issues.

So, what ‘positives’ can I draw from having MS?

Positive impact

There are many, including:

  • meeting a host of people, both in person and by telephone or online, that I would otherwise not have met;
  • new and often unexpected friendships;
  • writing for both MS and medical online publications;
  • using an electric powered wheelchair to restore some independence and to give Lisa a break from pushing me around;
  • visiting Moscow, somewhere I never thought I’d go, to check out its HSCT centre. My existing (non-MS) health did not make me a suitable candidate but the visit was worthwhile. And I saw the Kremlin, Red Square, the home of the Bolshoi Ballet, the former headquarters of the KGB, and more;
  • avoiding queues, or lines. From Radio City Music Hall, New York, through getting on and off cruise ships, to taking commercial airline flights, wheelchair users are given special and welcome treatment;
  • courteous treatment. Wherever I go, staff of shops, restaurants, everywhere are only too happy to help. And, more than that, even members of the public are willing to open doors, clear a way for me, and generally offer assistance.

These are just some examples. It’s by no means meant to be an exhaustive list.

Someone I have known for some time asked me the other day: “Surely, you don’t mean that you feel good about having MS?”

No, of course I don’t. Naturally, I’d be much happier to have a clean bill of health. But, as that isn’t the case, let’s make the best of it.

MS is not a reason to give up.

We are warriors. We must all look for the best in life and fight on.

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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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impact50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. 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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I said it 14 months ago, now researchers agree: MS is linked to ‘mono’

Great news. Science now backs my view, published here on July 14 last year, that MS is linked to glandular fever. The Epstein-Barr virus (EBV) causes mononucleosis or just mono, otherwise known as glandular fever. Researchers have just uncovered what they describe as a biological link between EBV and MS.

Fourteen months ago, in this blog, I posted an article titled MS is linked to Glandular Fever, I have no doubt: In it, I wrote:

“In my mind, MS is linked to glandular fever. From personal experience, there is no room for doubt of any kind.

“Trouble is, though, that my experience and belief is not proof. And that is why I find that efforts to establish a definite link between glandular fever, often known as the kissing disease, and MS is an exciting area of research.”

And that’s what they have now done.

biological link

Dr Annette Langer-Gould (pic: Kaiser Permanente Research).

Researchers led by Dr Annette Langer-Gould1 have now found a link between EBV and MS in three racial-ethnic groups. African-Americans and Latinos showing a higher risk for MS than Caucasians.

The research study, “Epstein-Barr virus, cytomegalovirus, and multiple sclerosis susceptibility,” was published in the journal Neurology.

In the past, other studies have suggested that EBV infection, which causes mononucleosis/glandular fever, increases the risk for MS.

Strong biological link

“Previous studies that have found a link between mononucleosis and MS have looked primarily at white populations, so for our study, we examined whether there was a similar link for other racial groups as well,” Dr Langer-Gould said in a press release. “Indeed, we did find a strong biological link for all three racial groups.

“While many people had Epstein-Barr virus antibodies in their blood, we found among all three groups, people who also developed mono in their teen years or later had a greater risk of MS. Delaying Epstein-Barr virus infection into adolescence or adulthood may be a critical risk factor for MS,” she said.

Recently, infection with cytomegalovirus (CMV), has been controversially linked to increased risk of MS. But researchers report that there was NO link for CMV. Instead, they found an inconsistent association across racial-ethnic groups. Antibodies against CMV are associated with a lower risk of MS, or clinically isolated syndrome, in Latinos. But this was not the case in African-Americans or Caucasians.

Overall, the researchers say that their results point to a strong biological link between EBV infection and MS. The say the results also highlight how understanding of the factors underlying MS can be greatly improved by multiethnic studies.

“Studies like ours that include participants from multiple racial groups can be a strong tool to test for biological risk factors, especially when the frequency of exposures to biological factors like Epstein-Barr virus and mononucleosis differ between groups. If the findings were not the same across all groups, it would be less likely that a link would be biological,” Langer-Gould said.

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1 Annette Langer-Gould, MD, PhD, is a Research Scientist in the Department of Research & Evaluation and serves as Regional Physician Multiple Sclerosis Champion at Kaiser Permanente Southern California. She is a practicing MS specialist at Los Angeles Medical Center.

Her epidemiologic research focuses on the role of vitamin D, genotype, race/ethnicity, and MS susceptibility, as well as predictors of prognosis and comparative effectiveness of MS therapeutics.

Dr Langer-Gould also leads a team developing, implementing, and evaluating programs to provide high-quality affordable care for individuals with MS.

She serves as co-chair of the Choosing Wisely Committee. She is a member of the Guidelines Development, Dissemination, and Implementation Subcommittee for the American Academy of Neurology. Additionally, she is a member of the National MS Society’s MS Prevalence Workgroup.

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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 Clinical Writer with Healthline, the fastest growing health information site. 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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DWP fights to hide WCA ‘under-performance’ and PIP assessments

I suppose, by now, that the ineptitude of the Department for Work and Pensions (DWP) should not surprise me. And while that is true, what does amaze me is its ability to keep proving it – over and over again.

Right now, besides all its usual carryings on, the department is fighting two similar but separate battles. It is trying its best, or maybe its worst, to hide information from the public. Information that we have a right to know.

hide

Photo: The Independent

First, the DWP is trying to hide from public scrutiny a report showing how well assessment company Maximus is doing. The company carries out the controversial, and widely despised, work capability assessment (WCA) for the Employment and Support Allowance (ESA). It also includes a look at Atos’s record as far back as 2011.

The Information Commissioner has already ordered the release of a copy of the report, which would give a breakdown of Maximus’s performance at each assessment centre. The DWP, however, is refusing to publish it and is now taking the case to an information tribunal.

Under-performance could damage reputations

The DWP claims that the information could “give a perception of under-performance’ which could ‘damage the reputation and standing of the companies involved”.

Duh, that’s the point. We all know the WCAs are a mess, this report would go towards proving just how bad it is. And the DWP as good as admits that the report could damage the standing of both Maximus and Atos.

The government ministry is therefore claiming that the report is exempt from disclosure because publishing it could damage the commercial interests of both Maximus and Atos, as well as the DWP itself.

Its second fight is to hide differences between Atos and Capita assessments, this time for the Personal Independence Payment (PIP),

This time the DWP is refusing to release training materials which would potentially highlight difference between the way that Atos and Capita carry out PIP assessments, according to Benefits and Work (B&W).

DWP refuses Freedom of Information request to hide facts

hideBack in June, Benefits and Work made a Freedom of Information Act request for training and guidance materials issued by Atos to staff carrying out PIP assessments. Detailed guidance covers issues such as the way in which requests for the recording of PIP assessments are dealt with.

However, the DWP refused to release the guidance on the grounds that it was commercially confidential.

The campaigning website asked the DWP to reconsider its decision. B&W says these are not commercially confidential matters and there is a strong public interest in how PIP is administered on a day-to-day basis.

It says: “If there is a difference in how PIP is managed by different companies, then this is also a strong matter of public interest. Claimants ought to be able to be sure that their assessment is a standardised one and not one based on which company carries it out.”

The DWP, however, is having none of it. Once again, it continues to hide the documents because it considers them to be commercially confidential.

DWP says “commercially confidential” tag exempts it from FoI

The DWP said: “Release of this information would reveal to their competitors commercially sensitive information which would disadvantage IAS’s (Independent Assessment Service, the name that Atos now uses) competitive position in the marketplace.

“This in turn would prejudice the ability of the department to secure best value for the taxpayer when the contract is re-tendered. Release of this type of key financial information would also undermine the effectiveness of the department’s future dealings with IAS or other service providers.”

A B&W spokesman said: “The DWP now routinely refuses a large proportion of freedom of information requests on the grounds of commercial confidentiality. It does this without attempting to justify in any way how anyone’s interests would be threatened.

“Benefits and Work is now applying to the Information Commissioner to have the documents disclosed.”

I receive both ESA and DLA, because of disability caused by MS. As such, I cannot allow horrendous cover-ups like these to go unchallenged – and I urge you to do the same. Public interest and freedom of information must triumph over so-called ‘commercial confidentiality’.

That is just a smokescreen behind which the DWP is using to hide the facts…the facts we need and deserve to see.

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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 Clinical Writer with Healthline, the fastest growing health information site. 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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Government figures prove UN’s human catastrophe verdict

Shocking new figures underline the facts behind a UN committee’s decision to describe UK welfare benefits as a human catastrophe.

And the figures come from the government’s Department for Work and Pensions (DWP). Not that they were provided willingly. The MS Society forced them out by a freedom of information request.

During the first three years of Personal Independence Payment (PIP), people with MS have lost at least £6 million a year in benefits, according to the society. PIP started to replace Disability Living Allowance (DLA) in 2013.

The Department for Work and Pensions admitted that between October 2013 and October 2016:

  • almost one in three people (2,600) with MS who received the highest rate mobility component of DLA had their payments cut after they were reassessed for PIP.
  • nearly a quarter (800) who received the highest rate for the care component of DLA had their payments cut after being reassessed for PIP.

System doesn’t make sense

reassessed

Genevieve Edwards (pic: MS Society).

MS Society director of external affairs, Genevieve Edwards, said: “These staggering figures show how PIP is failing some people with MS who need the highest level of support.

“It doesn’t make sense that people are losing money they once qualified for, when they are living with a progressive condition.” I agree, the disease gets worse progressively, not better.

The society is rightly worried that many people no longer get what they were entitled to, and should still be able to claim. Their individual situations are no better but their care benefits have been cut.

One problem is when people are unable to explain the reality of living with MS when reassessed for PIP. And assessors, who are of dubious quality, rarely understand how unpredictable it can be.

Harder to get highest rate mobility under PIP

Additionally, it’s now also harder to qualify for the highest rate of mobility support for PIP. And that’s what you need to take advantage of the Motability car scheme.

Before the changes, under the DLA claimants wouldn’t receive the highest level of support if they could walk more than 50m. Now, under PIP, they won’t get the higher rate if they can walk more than 20m – including the use of sticks or walking aids, if needed.

Exactly what the basis of that change is, I just don’t know but it is unfair. Interestingly, on May 4 last year Baroness Altmann, then minister of state at the DWP, said in the House of Lords: “I would like to clarify what appears to be a widespread misconception regarding the differences between the mobility assessment in PIP and the mobility assessment in DLA. (See my post of May 16, 2016, Disability: There is no 20-metre rule, says minister).

“Many noble Lords have spoken of a ‘20-metre rule’, but there is no such rule. Some people believe that we have changed the assessment of a distance a claimant is able to walk from 50 metres to 20 metres. This is not the case.”

What a load of absolute codswallop.

  • Have the requirements changed between being assessed for DLA and being reassessed for PIP? YES.
  • Is the cut off for highest rate mobility payment now being unable to walk 20m instead of 50m? YES.
  • Did Baroness Altmann lie? Well by archaic tradition, she cannot be accused of lying as she made the statement in the House. She can only be guilty of “misleading the House”. It is clear, she did mislead the House.

Now, what is a non-parliamentary term for deliberately misleading the House? Let me think. Oh yes, I remember, it is LYING.

Fix this broken system, MS Society demands

The MS Society is calling on the government to urgently fix “this broken system” and ensure PIP assessments reflect the realities of living with MS. I couldn’t agree more.

“Having MS is hard enough. It shouldn’t be made harder by a system that doesn’t make sense,” said Ms Edwards.

And so say all of us. 

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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 Clinical Writer with Healthline, the fastest growing health information site. 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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Treatment of disabled people is an international disgrace

I find it disgraceful that the government’s treatment of disabled people is so disgusting that it can be labelled a human catastrophe. And that’s not disability campaigners saying that. No, no. It’s a United Nations committee’s damning verdict.

human catastrophe

Theresia Degener.

The UN’s Committee on the Rights of Persons with Disabilities is investigating the UK’s progress in implementing the UN Convention on the Rights of Disabled People.

Last October it warned that welfare cuts had led to “grave and systematic violations” of rights. Now, the committee says the UK has failed to meet its obligations under the convention.

Britain signed up to that convention in 2007. It includes the rights of disabled people to live independently, to work and to enjoy social protection without discrimination.

Committee chairwoman Theresia Degener said it’s a human catastrophe that social services cuts have totally neglected needs of disabled people.  And  committee member Stig Langvad added the UK is “going backwards” on disability issues.

Ms Degener said: “The austerity measures that they have taken – they are affecting half a million people. Each disabled person is losing between £2,000 and £3,000 per year. People are pushed into work situations without being recognised as vulnerable. The evidence that we had in front of us was just overwhelming.”

The committee’s inquiry looked at a variety of concerns across a host of areas. These included education, work, housing to health, transport, and social security. Also, the report contained more than 60 recommendations for UK ministers.

Ms Degener accused British politicians of failing vulnerable members of society. Additionally, UK officials faced allegations of misrepresenting the impact of policies. This was because questions were unanswered, and statistics and statements on policies and legislation were misused.

Human catastrophe shambles needs fixing

She said evidence seen by the committee, and a review it carried out last year, made clear the impact of austerity policies on the disabled.

Shadow work and pensions secretary Debbie Abrahams said: “The UN committee has found that this Tory government is still failing sick and disabled people.

“Their damning report highlights what many disabled people already know to be true. They are being forced to bear the brunt of failed Tory austerity policies.”

A government spokesperson said: “We’re disappointed that this report does not accurately reflect the evidence we gave to the UN, and fails to recognise all the progress we’ve made to empower disabled people in all aspects of their lives.

“We spend over £50bn a year to support disabled people and those with health conditions – more than ever before, and the second highest in the G7.

A spokesman said the government is committed to further rights and opportunities for all disabled people. It is encouraging that almost 600,000 disabled people have moved into work in the UK over the last four years.

Chairman of the Equality and Human Rights Commission, David Isaac, described report as “damning”. He said disabled people in Britain are treated like “second class citizens”.

“We have long urged the government to make changes. The UN recommendations are further proof that immediate action must be taken,” he said.

My view is that the human catastrophe criticism isn’t a surprise, and the government should put its house in order. But don’t hold your breath because, as good a dream as it is, it won’t happen in reality.

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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 Clinical Writer with Healthline, the fastest growing health information site. 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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Beach accessibility is OK, but what about the sea?

I live 15 minutes from the beach, where the sun shines around the year, and accessibility for wheelchairs is provided. That’s good news for people with disabilities, like me with multiple sclerosis, and other wheelchair users.

beach

That’s me on the beach wheelchair access in Spain. That’s as close as I can get to the Mediterranean behind me.

The majority of Spanish beaches facing the Mediterranean have permanent wooden pathways across the sand. And they culminate in a cross-piece parallel to, but yards from, the water’s high tide level. This seems like most beaches that provide access for chairs without the special wide tyres that can handle sand.

I was reading about a campaign in the USA to make sure beaches there become accessible. The article was written by a former colleague of mine, Ed Tobias, and published by Multiple Sclerosis News Today. In his MS Wire column, Ed wrote:

Beach Days for All

So, I want to applaud some people who live along the New Jersey shore and who launched a campaign called “Beach Days for All.” One of them is Jessica Krill. Jessica was born and raised in Seaside Park, New Jersey. She knows about beach access problems because she’s the mother of two special-needs children.

beachJessica and her friend, Chris Aldrich, put together a Facebook page promoting their access campaign. They also reached out to Seaside Park’s government officials, spoke before the Borough Council, and enlisted the support of Justin Auciello, the creator of the website and Facebook page “Jersey Shore Hurricane News,” to help find a way to make their beach more accessible.

That “way” turned out to be using temporary, hard plastic mats, similar to those that cover the grass and dirt at sports stadiums during special events, such as concerts. The mats formed a path from the dunes to the water and they came as a donation from Matrax, the company that supplies mats to Met Life Stadium in New Jersey. Its chief operating officer, Joe Wright, made the offer after seeing the “Beach Days for All” Facebook page. They were put down on Seaside Park’s F Street beach in mid-August.

Wheelchairs have access to beach but not to the water

But those pathways are only good for access to the beach. They fall woefully short, quite literally, of satisfying anyone wanting to dip their feet in the water. And that’s a problem on both sides of the Atlantic. US beach paths appear from the pictures to be of a similar design as here in Spain.

And that should change. It really is time for accessibility for wheelchair users to thought of in terms of the sea itself, not just the beach.

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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 Clinical Writer with Healthline, the fastest growing health information site. 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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