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News and Opinions about MS, Health & Disability

To tell or not to tell about having MS

Everyone who receives a diagnosis of having multiple sclerosis faces some immediate challenges.

One is coming to terms with the diagnosis, which is something that might come as a shock. Another is to decide whether to be open about it. To reveal your news to everyone is always an individual choice as no single answer suits all, no ‘one size fits all’.

tellingI received my diagnosis in April 2002, almost 16 years ago. It was not so much a shock as a relief that I finally knew what was wrong. Then, of course, I had to learn as much as I could about the disease with a somewhat strange name.

To tell or not to tell? This is an issue we all must face. And, if we tell, with whom are we open – and who not?

There’s no one correct answer as we are all different, have our own personalities, and live our own lives. As such, we all need to make up our own minds, depending on how comfortable each of us feels.

It may help to break up who might be told into different groups. For example, your husband or wife, or other partner, along with immediate family; your close friends; your employer and colleagues; and anyone else.

There is absolutely no need to tell everyone that you have MS but, of course, there is no reason why you shouldn’t.

Upset, accept, understand

I think that the first people we are most likely to tell are those closest to us. However, they are also the most likely to be upset by the news and may need longer than others to accept your situation. Add to that, just as you have to learn about MS and what it means, there is a fair chance that those nearest and dearest to you won’t fully understand what it means.

Probably, the best advice I can offer is to try to give as much informative as you can. It’s important, too, to let them know that MS affects everyone differently, so that there’s no need to assume the worst possible future for you.

Children present another problem, and it’s one I have not had to experience personally. From the experience of others, it would seem best to tell children as much as you think they can understand at their age. Honesty is the best policy, so they learn from you, not go to others to get possibly incorrect information.

I did decide to let my employer know and, to be fair, the news was taken well. Some physical adjustments were even made to make my work easier. In fact, I worked there another five years before it became obvious that the physical disability, namely mobility problems caused by MS, made working there impossible.

As I said earlier, whom you tell and how soon, is a personal decision only you can reach. I made my choice in 2002. If you’re having trouble deciding who to tell, when, and how, I suggest you follow click here to find some great advice.

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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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Is your MS flare-up real or is it a pseudo-relapse?

Have you had a multiple sclerosis relapse recently? Actually, would you know if you had? In fact, would you be aware whether you are had a relapse or a pseudo-relapse?

Pseudo? What’s that? Read on.

A true relapse – or flare-up, exacerbation, even attack – is a time of new or worsening of MS symptoms.

For your episode to be recognized as a true MS relapse, four conditions have to be met. These are:

•       pseudo-relapse Existing symptoms of MS must have become worse or new symptoms appeared.

•        Symptoms must last at least 24 hours.

•        Symptoms must occur at least 30 days after the last relapse.

•        There must be no other explanation for the symptoms.

However, even knowing this list, identifying what you have can be difficult. And it matters not whether you have had MS for years or are newly diagnosed. Telling the difference between a true or pseudo-relapse is more than a little tricky.

Telling the difference

On the upside, pseudo-relapse symptoms tend not to last long. Indeed, they may resolve within a day. Additionally, if your symptoms are caused by something else that can be treated, such treatment will resolve the problem.

Most importantly, pseudo-relapses are not caused by new damage to the central nervous system. A pseudo-relapse is NOT associated with an active MS lesion on MRI.

So, what are likely to cause pseudo-relapses? Well, they may be caused by heat sensitivity or infections including the common cold.

Once you get over these infections, your MS symptoms should get better.

Medications, both for MS and for other conditions, can also cause new symptoms. Be sure to discuss any medications you are taking with your healthcare provider.

True or pseudo-relapse?

Here are some clues to help you decide if your episode is true or not.

Timing: If your worsened symptoms resolve fairly quickly, it is likely that you may have a pseudo-relapse.

Old symptoms: Reappearance of old symptoms is more common in a pseudo-relapse. Generally, you will not experience another true relapse in exactly the same way as a previous one.

Types of symptoms: Some worsened symptoms are more likely to be a pseudo-relapse than a true relapse. These include sudden worsening of spasticity and pain, which are certainly seen in MS, but are rarely due to an acute relapse.

As someone with secondary progressive MS, and who has inactive lesions, I don’t get true relapses. Pseudo-relapses are, though, a way of life – especially if I have an infection.

I have been sneezing a lot in the past few days and am starting to get that ´blocked up´ feeling – sure signs that a cold is on the way.  Oh joy, my MS symptoms are set to get worse temporarily – my very own pseudo-relapse.

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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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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MS: In sickness and in health, until …

I just love the image on an MS sweatshirt that popped up on Facebook the other day.

The central graphic is the orange MS ribbon flanked by a pair of angel wings. Above it are the words:

Someone said to me “I don’t know how you do it”

Below, it says:

I replied “I wasn’t given a choice”

loved onesThe graphic had such an impression on me that I was considering buying one for my beloved wife Lisa. But then, the message wouldn’t match reality as she DID have a choice.

Unlike most people whose loved ones have MS, or any other chronic illness, Lisa was fully aware that I had the disease well before we were married. In fact, well before I proposed.

The majority of spouses only learn of their loved ones’ diagnosis when they themselves do. Many stay to give care alongside love but some end up leaving as the strain becomes too much.

This was brought home to me by a piece published online by multiplesclerosis.net, written by Devin Garlit.

This is the beginning of his article:

So I’m sitting here, just flabbergasted that it’s happened again. For the third time in just this month, a fellow MS Warrior has confided in me that their significant other is leaving them because of their disease.

This is not a new occurrence, I’ve had many people reach out to me with similar stories, particularly after I wrote about my own experience with the subject

Loved ones

Many platforms are quick to share stories of wonderful relationships that endure despite MS, but it’s clear that many times, things go a different way. In fact, every breakup that I’ve heard about was often a “solid” relationship until it wasn’t. 

Being the partner of someone with MS, especially as the disease progresses, isn’t for everyone. A chronic illness is the ultimate test of a relationship, a test that not all will pass. I’m here to remind you that it’s ok when this happens, that you aren’t alone, and that life is far from over if that test fails. 

When it comes to marriage, people are quick to point out vows, and how they often explicitly mention this scenario. It’s right there right? “In sickness and in health” A vow is forever, right? Well, yes, that’s the idea. But in practice, it doesn’t always work out that way.

Let’s face it, a lot of people break vows. I’m not saying that’s ok, I’m just pointing out the reality. No matter how much you believe in vows, you can’t always be prepared for what it takes to be with someone with a chronic illness.

When you take those vows, your intentions may be great, but you simply can’t understand what life might be like. How many people have been tough guys during training but have gone to war and were suddenly not-so-tough once the bullets started flying? I’m guessing many.

 What would you do?

It’s always easy to point to vows and say, “but hey, they promised”. The truth is, none of us can say what we’d do in that situation. Many of you are saying, “oh, I’d stay by them, I’d stick to my vow”. 

Well, yea, I say that too, but, I also know that, until I’m in that situation, I can’t really be sure what I would do.

You can read Devin’s complete article here.

I applaud all spouses, partners or ´significant others’ for staying with their loved ones in their time of need. Likewise, I sympathise with those who cannot see that journey through.

My beloved Lisa.

In my case, Lisa is amazing and loving. She loves me as I love her. She gives me 24/7 care but says she does what she does for me as my wife, not my carer.

Add to that, my sweet angel not only knew I had MS but also had prior knowledge of it. Her grandfather also had the disease, and she knew how it might progress. So, that sweatshirt wouldn’t be right for Lisa. She DID have a choice. Her eyes were wide open, and she still agreed.

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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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Fury at BPS ‘influence’ and being assessed as ‘fit to work’

News that the government’s disability employment strategy seems heavily influenced by the discredited BPS disability model has prompted a furious reaction. A quite justifiable one, in my view.

In this column, on Wednesday, I wrote about and commented upon what senior civil servant Tabitha Jay revealed. She had been speaking to MPs in the all-party parliamentary group for disability (APPGD).

BPS

My blog of two days ago, that prompted strong reactions.

While doing so, she mentioned the discredited “biopsychosocial” (BPS) model, the Disability News Service (DNS) reported. Further, DNS said Jay appeared to suggest BPS was “running in parallel” to the social model within the strategy.

On Facebook, group administrator Jan Thompson wrote: “Heavily influenced?….that’s a bit of an understatement isn’t it? This why ‘sick note’ was changed to ‘fit note’ …make us believe we are ‘fit’ & not ‘sick’. I’m sick of being used as a guinea pig….when I go to my docs it’s cos I’m unwell…not because I’m fit as a fiddle. Bps psycho babble.”

In the same article, I also wrote about Welfare Weekly‘s report about disability benefit assessments. It said, in just 18 months, upwards of 220,000 people have been awarded zero points when assessed for Personal Independence Payment (PIP).

Here, too, strongly-held and equally justifiable views came in. Here are a few of them:

On my blog itself, steveu wrote: “Several occupations require you to hold a minimum medical category. As MS is a progressive disease you steadily fall down the medical categories until you no longer meet the minimum and then you are no longer employable, sometimes just the diagnosis is sufficient to move you out.”

Nearly unbearable

On Facebook, Kevin Smith wrote: “My consultant told me I’ll never be able to work again but DWP tries to go against it. Won 2 appeals but the stress was nearly unbearable and made me even worse.”

Marie Grant wrote: “Where are all our healthcare professionals in all this? Why are they allowing their diagnosis to be overturned by nurses, physiotherapists and scores of others who have a vested interest in finding the sick and disabled fit for work. I feel totally let down by them all that they have let this happen.”

Jan Thompson, again, wrote: “The savage cuts have nothing to do with saving money so to speak. It’s social experiments to convince people they’re not really ‘sick’…sadly they don’t care that it’s not working. It costs more to implement than what it actually saves.”

Marie Grant, again, wrote: “It’s nothing short of persecution of the most vulnerable people in our society. I consider myself fortunate in the fact I was able to work for so long so I am reasonably financially secure. Having said that, I have never in my life felt so oppressed by my own government. Feel so sorry for all those who have no option but to depend on benefits, the stress and worry they’re put through is inhuman.”

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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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Told you are well enough to work and don’t need disability benefits

Campaigners and activists are concerned that the government’s disability employment strategy seems heavily influenced by the discredited “biopsychosocial” (BPS) model.

Tabitha Jay let out the cat out of the bag. She is the civil servant who heads the UK government’s work and health unit, responsible for the disability employment strategy.

According to the Disability News Service:

Jay told a meeting of the all-party parliamentary group for disability (APPGD) … that the disability employmentsocial model of disability underpinned the strategy, which has an aim of seeing one million more disabled people in work over the next 10 years.

But she also appeared to suggest that the BPS model was “running in parallel” to the social model within the strategy.

Critics  say the BPS model blames individual person with a disability for being unemployed. It says they have negative attitudes towards working.

So, our health problems are just in our heads, right? No, that’s not true. We’d love to work, we just can’t.

Government ministers say they want to reduce the disability employment gap by encouraging people with disabilities to gain employment.

disability employment

Chancellor Philip Hammond MP.

Then, of course, chancellor of the exchequer Phillip Hammond started singing from a different songsheet. He said disabled workers were holding back productivity in the UK economy.

Arrant nonsense of course.

Awarded zero points

It seems that he meant that there is no point employing people with disabilities. Why? Because the adjustments they require cancel out any usefulness they have. More nonsense, but it’s not going to encourage job offers to the disabled.

Turning  to disability benefits, Welfare Weekly says, in just 18 months, upwards of 220,000 people have been awarded zero points when assessed for Personal Independence Payment (PIP).

It also says that, during the same period, 180,000 people have been denied PIP after being told to transfer from Disability Living Allowance (DLA).

By awarding zero points, the Department for Work and Pensions (DWP) is telling people that there is nothing wrong with them. Well, not enough to justify them being given disability benefit money to help everyday living.

Journalist Mike Sivier, on voxpoliticalonline.com comments:

That seems to bear out the claim that the BPS model is still being used, and people are still being told their disabilities are all in their minds – and blamed for it, rather than helped.

• Just a thought, why was a civil servant representing the DWP at the meeting? She was filling in for disabilities minister Sarah Newton who had pulled out at short notice. She had originally promised to answer questions about the 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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Cuts proposed to MS treatment options

It cannot be right, it really can’t! People with multiple sclerosis are facing being denied access to five previously approved disease modifying therapies (DMTs). This shocking development would affect people who are newly diagnosed or those wishing to change to a different drug.

The proposal to cut the number of treatment options comes in the form of a draft recommendation from the UK’s National Institute for Health and Care Excellence (NICE). Its preliminary proposal would affect people with MS in England and Wales who receives treatment via the country’s National Health Service (NHS).

NICE’s role is to provide national guidance and advice to improve health and social care.

A consultation period on the proposed recommendation ends this Wednesday, January 24, so very little time remains for patients, doctors, caregivers and others can make their views known. To add your comment, click on this link.

NICE is to meet again on March 6 to review comments received, and discussions it has had with the drugs’ manufacturers, before it makes its final recommendation.

treatment optionsThe good news is that, under the preliminary proposal, anyone with MS who is already on one of these treatments would be able to continue to take them.

NICE’s draft recommendation, if confirmed, would mean the cheapest drug Extavia (interferon beta-1b) would continue to be available on the NHS for new patients. But five others would no longer be treatment options because of costs.

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

  • Avonex (interferon beta-1a)
  • Betaferon (interferon beta-1b)
  • Copaxone (glatiramer acetate)
  • Plegridy (peginterferon beta-1a)
  • Rebif (interferon beta-1a)

NICE says it has made the draft recommendation because it believes that while all the treatment options have a similar clinical effect, only Extavia is cost-effective.

Treatment options: a step backwards

Both the MS Society and MS Trust are ranged against the proposal.

MS Society director of external affairs Genevieve Edwards says the society doesn’t want to see patient choice limited in this way.

She said: “While people with MS already receiving these treatments can be assured they won’t have to come off them, we’re worried about what this proposal means for the future of patient choice. We have made so much progress on treatment options for people with MS, and it would be a significant step backwards if people with MS were now left with less choice and potentially no effective option.

“We want the companies who make these drugs to keep negotiating and come to a deal with NICE and NHS England so patients don’t lose out. Everyone with MS should be able to get fair and equal access to the right treatments at the right time.”

A statement from the MS Trust says it is very disappointed in the initial decision.

It says: We do not believe that NICE’s recommendations are in the best interests of people with MS or the NHS.  We strongly believe that all current treatments should remain available as treatment options for all eligible patients.

“NICE has acknowledged that all six drugs are equally effective at reducing the number of relapses and slowing down disability progression. The decision to approve Extavia and not the other five drugs all comes down to cost – Extavia is the cheapest option.

“These recommendations would take away choice from people with MS.  In our view, the recommendations do not take account of:

  • the differences in how treatments are administered
  • the diverse lifestyles of people with MS, and how different treatments suit different people
  • the differing tolerances of individuals to the side effects of the drugs”

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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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

 

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Government surrender in benefits battle

A government U-turn, in the face of court judgment, means almost 165,000 people will benefit from higher disability benefits. Conservative politicians had tried to prevent people with psychological distress from receiving higher rates of Personal Independence Payment (PIP). But the judges said ‘no’.

u-turn

Esther McVey, work and pensions secretary.

The UK government had been thought likely to challenge the court ruling, and had said it would cost an extra £3.7bn to reverse the changes it had made.

Now though, like a coward in the face of enemy fire, it has deserted its position and run for cover. Figuratively raising the white flag of surrender, new work and pensions secretary Esther McVey has ruled out fresh legal action. She did so in a written statement to parliament.

U-turn on PIP welcomed

Disability campaigners have welcomed the U-turn. Just as I do.

It all started early last year, when new regulations said that people who could not travel independently on the grounds of psychological distress, as opposed to other conditions, were not entitled to the enhanced mobility rate of Personal Independence Payment.

Ministers dismissed criticism from an independent tribunal before the High Court ruled that they were “blatantly discriminatory”.

In her statement to the House of Commons, Ms McVey said that the Department for Work and Pensions (DWP) “will now take all steps necessary to implement the judgment in the best interests of our claimants, working closely with disabled people and key stakeholders over the coming months.” She added that all payments would be backdated to the date in each individual claim.

“Although I and my department accept the High Court’s judgement, we do not agree with some of the detail contained therein.

Identify claimants entitled to more

“Our intention has always been to deliver the policy intent of the original regulations, as approved by parliament, and to provide the best support to claimants with mental health conditions,” she said.

The DWP must now identify people who may be entitled to more as a result of the court judgement.

Labour’s shadow work and pensions secretary Debbie Abrahams said ministers had been wrong to “ignore” the view of an independent tribunal and to try and “defend the indefensible”.

Disability charity Scope chief executive Mark Atkinson described the original proposals as discriminatory.

He said: “This announcement is a victory for the many disabled people who have been unable to access support they are entitled to. The regulations introduced last March made crude and unfair distinctions between those with physical impairments and mental health conditions.”

Fine, now let’s see how quickly the DWP translates its defeat into action that helps people. I suspect higher payments may be a long time coming.

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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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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DWP ordered to publish secret reports on failings of Atos and Capita

The information commissioner has ordered the UK government’s Department for Work and Pensions (DWP) to release documents it has been keen to keep hidden. But the fight may not be over yet as the DWP says the position is being considered.

The documents in question are reports that are likely to reveal the widespread failings of two of its disability benefit assessment contractors. – Atos and Capita. These are two of the companies that assess applicants for disability benefits, such as people with disabilities from MS and other causes.

The story has been highlighted by journalist John Pring on the Disability News Service website. He writes:

reportsDWP has been attempting to prevent the documents being released since receiving a Freedom of Information Act request from campaigner John Slater in December 2016.

He said the documents – if and when they are eventually released – will reveal the truth about what DWP knows about Atos and Capita.

Last month, the two outsourcing companies, which are paid hundreds of millions of pounds to carry out personal independence payment (PIP) assessments, told members of the Commons work and pensions committee that they had never met contractual quality standards on the reports their staff write for DWP.

The documents Slater has been seeking could provide further evidence of such failings, and fuel campaigners’ fears that Atos and Capita have been told by DWP to find a certain proportion of claimants ineligible for PIP.

Under the terms of their contracts to assess claimants across England, Wales and Scotland for their eligibility for PIP, Atos and Capita must provide monthly reports to DWP that cover “all aspects of quality, including performance and complaints”.

The reports include detailed “management information”, including the number of complaints made against assessors, what proportion of assessments led to claimants meeting the PIP criteria, and the average length of time taken for face-to-face assessments.

Reports requested

Slater, who works in programme and project management when he is not campaigning on issues around freedom of information, had asked DWP to provide copies of these reports for every month of 2016.

He told Disability News Service that the reports would provide “raw data” on the companies’ performance, before DWP “has had a chance to massage it”.

He said: “I suspect what they will show is not only that the contractors are struggling but also how bad DWP is at managing contracts.”

DWP has continued to try to block Slater’s request, initially claiming that it did not hold the information he had requested, before arguing that releasing the monthly reports would prejudice the “commercial interests” of Atos and Capita.

It later told the Information Commissioner’s Office (ICO) that releasing the information “will give rise to items being taken out of context… [and]will be misinterpreted in ways that could lead to reputational damage to both the Department and the PIP Providers”, and would “prejudice the efficient conduct of public affairs” by DWP.

It also warned ICO that the information could be “maliciously misinterpreted to feed the narrative that the Department imposes ‘targets’ for the outcomes of assessments”.

But ICO has now dismissed those arguments and has ordered DWP to release the reports, although it could now appeal against this decision to the information rights tribunal.

ICO concluded that it “has not been satisfied that disclosing the withheld information would be likely to damage the commercial standing of Atos and Capita” and “has not been persuaded by the DWP that it could not provide the necessary explanation, or context, to avoid misunderstandings”.

ICO also ruled that DWP had breached the Freedom of Information Act by initially failing to say within 20 working days whether it held the information Slater had requested.

Potentially significant

Slater has a similar appeal being dealt with by ICO relating to management information reports provided to DWP by Maximus, the contractor that carries out work capability assessments on its behalf.

Bob Ellard, a member of the national steering group of Disabled People Against Cuts, said: “The information commissioner’s ruling that the DWP must comply with John Slater’s freedom of information request on the performance information on the PIP contract is potentially very significant for disability campaigners.

“If the DWP cannot find a way to block or dodge this request (and they will try very hard to do this) this disclosure could reveal the full extent of the calamity that the PIP contract has visited on disabled people.

“It will also reveal exactly how much the DWP has known all along about how terrible performance on this contract has been.

“We as campaigners will be able to compare what they knew about the contract with the public statements that they have made, revealing the scale of lies and disinformation put out by the DWP to the public and parliament.

“While this in itself is not likely to be enough to bring down the festering sore that is PIP, it might represent another milestone on the way to achieving the end of PIP.

“We at DPAC applaud the work done by John Slater, and wish him well in continuing to pursue this and other investigations into the DWP that he is making.”

A DWP spokeswoman said: “We have received the ICO judgement and we are currently considering our position.”

Don’t get your hopes up. The phrase “considering our position” doesn’t mean that the DWP is about to capitulate. If it can find a way to avoid complying with the order, trust me, it will.

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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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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More lies from a disability minister – this time to MPs

As soon as Esther McVey was work and pensions secretary, one of her junior minister  told lies to MPs. Not that parliamentarians call it telling lies. In their terms, disabilities minister Sarah Newton misled the house of commons.

lies

Sarah Newton MP, minister for people with disabilities.

Now, Department of Work and Pensions officials are making excuses. A DWP spokeswoman told Disability News Service the minister had not intended to discuss the proceedings in any depth, and: “The preparation for the ILF debate was carried out well before the reshuffle, and the minister had no prior knowledge of its outcome.”

The problem is, what Ms Newton told the house although McVey’s 2012 decision to close the Independent Living Fund (ILF) was challenged with a judicial review, “throughout the process the DWP won on all points.”

That’s simply not true. That’s telling lies.

Journalist John Pring wrote on Disability News Service website: “The three judges unanimously overturned an earlier ruling by the high court and found that her (McVey) decision to close the fund was unlawful, and that she had breached the Equality Act’s public sector equality duty.

Lies, damn lies, and statistics

“She was heavily criticised by the judges, with one saying there was no evidence that she had “directed her mind to the need to advance equality of opportunity”.

lies

Esther McVey, work and pensions secretary.

As far as I am concerned, that means the DWP did not win on all points.

What actually happened was that, in 2012 when Esther McVey was disabilities minister, she closed the Independent Living Fund. The decision was challenged and, finally, three appeal court judges firmly rejected her decision.

Full details can be found here.

Ms McVey’s appointment to work and pensions secretary has been met with criticism.

Linda Burnip, co-founder of Disabled People Against Cuts, spoke out. She said: “People see this as a deliberately provocative appointment.”

She added that they feel it will lead to further abuse and denial of rights for disabled people.

John McArdle, co-founder of Black Triangle, said: “We can now expect an intensification of the government’s campaign of violations against the fundamental human rights of the UK’s disabled population.”

Sue Bott, deputy chief executive of Disability Rights UK, was more cautious. She said McVey had “a very full in-tray when it comes to disabled people.

“We hope she’ll work with us to come up with practical responses to some of the critical issues around disabled people’s ability to live as full and equal citizens in the UK.”

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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.

* * * * *

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

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Fatigue makes it difficult to push on

I love writing. No surprise there, it has after all been a major part of my life. But, today, it’s not so easy because I have been hit by a bout of fatigue.

Fatigue is just one possible aspect of multiple sclerosis – but there are plenty of other causes too.

And for anyone fortunate enough not to be affected by fatigue, please don’t tell us to get a good night’s sleep. Be assured, that is not enough.

So, what is fatigue?

The medical information website healthline.com says:

Fatigue is a term used to describe an overall feeling of tiredness or lack of energy. It isn’t the same as simply feeling drowsy or sleepy. When you’re fatigued, you have no motivation and no energy. Being sleepy may be a symptom of fatigue, but it’s not the same thing.

Fatigue is a common symptom of many medical conditions, which range in severity from mild to serious. It’s also a natural result of some lifestyle choices, such as lack of exercise or poor diet.

If your fatigue doesn’t resolve with proper rest and nutrition, or you suspect it’s caused by an underlying physical or mental health condition, see your doctor. They can help diagnose the cause of your fatigue and work with you to treat it.

Why do we get fatigue?

Causes of fatigue can be described, in general terms, as your lifestyle, and your physical or mental health.

Healthline lists lifestyle factors as physical exertion, lack of physical activity, lack of sleep, being overweight or obese, periods of emotional stress, boredom, grief, taking certain medications such as antidepressants or sedatives, using alcohol on a regular basis, using street drugs such as cocaine, consuming too much caffeine, and not eating a nutritious diet.

We know that those of us with MS can get fatigue but there are other physical conditions that can also cause it. Healthline says these include, anemia, arthritis, bromyalgia, chronic fatigue syndrome, infections such as cold and flu, Addison’s disease – a disorder that can affect your hormone levels, hypothyroidism or underactive thyroid, sleep disorders such as insomnia, autoimmune disorders including MS, congestive heart failure, cancer, diabetes, kidney disease, liver disease, chronic obstructive pulmonary disease, and emphysema.

As for mental health conditions, fatigue is a symptom of anxiety, depression, and seasonal affective disorder.

In my case, I’ll blame the MS but today the level of fatigue has been made worse by trying to do too much, too quickly.  Right now, I feel totally worn out and am having trouble keeping my eyes open.

Goodnight.

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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 intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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