UA-79233833-1

50shadesofsun

News and Opinions about MS, Health & Disability

Disabilities: Government loses tribunals, then changes rules

orange

Unhappy about two decisions made against it in legal tribunals, in relation to assessments for a disability benefit, the government now plans to change the regulations to get its own way. Is that a cynical response? Yes. It’s like changing the rules of a sport halfway through a game because you don’t like the referee’s decisions.

It all stems from decisions made last rear by the Upper Tribunal that had the effect of widening the criteria for qualifying for different elements of the UK government’s Personal Independence Payment (PIP). The benefit is claimed by people with MS and many other disabilities.

There is no doubt that the tribunal was entitled to make its judgments in the way the law was written but they did not fit in with the government’s view. So the regulations are to be changed to put things back the way they were.

pip

Minister for Disabled People, Penny Mordaunt MP.

Interestingly, and this is puzzling, in a statement made to the House of Commons on Thursday, minister of state for disabled people Penny Mordaunt said: “This (the changes) will not result in any claimants seeing a reduction in the amount of PIP previously awarded by DWP.”

Does that mean that anyone who has benefited from the tribunal decisions will keep their payments but that new applicants will have to abide by the changed regulations, once they come into effect? Don’t hold your breath!

The MS Society says: “The planned changes will affect the way that someone’s level of PIP award is calculated. They affect one of the 10 ‘daily living activities’ (which determine eligibility for the daily living component), and one of the two ‘mobility activities’ (which determine eligibility for the mobility component).

“The affected activities are Daily Living Activity 3 – Managing therapy or monitoring a health condition, and Mobility Activity 1- Planning and following a journey. The changes make these descriptors slightly more restrictive. They could impact the awards some people get.”

What that the extent of the impact for people with MS or other disabilities is not yet known but various disability groups will be working to establish how they will affect their communities. 

strap-new

ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

4 Comments »

MS Love and Care, as Only a Superwife Can Provide

orange

Thoughts of love were brought to the forefront of many people’s minds on Valentine’s Day, which is widely celebrated by couples both young and not so young. They usually buy cards and enjoy romantic dinners.

In our case, Feb. 14 also is Lisa’s birthday. So, to me, that is more important. We went out for her birthday meal — in fact two — lunch and dinner. And very good they were, too.

loveBut that got me thinking, Lisa is my wife and, as I have multiple sclerosis, also is my carer. However, she says that whatever she does as my carer is only what any loving wife would do for her husband. And, while I can see that is true to a certain extent, it actually goes further.

There can be little doubt that wives, or husbands, of people with MS do have to contend with more than those of people without a disability. Lisa, for example:

  • Provides extra support while I walk a little outdoors;
  • Gets my wheelchair in and out of the car;
  • Helps me to get up after a fall;
  • Deals with extra laundry if my bladder problems cause an accident;
  • Takes full responsibility for my medications, ensuring I take them at the right times;
  • Does all cooking, because I cannot do so safely;
  • Does all cleaning and other housework, because I cannot stand up long enough to help. (I do what I can sitting down);
  • Helps me shower, especially below my knees;
  • Helps me to dress as I cannot fasten buttons, tie shoelaces or do anything that requires manual dexterity;
  • Is my personal manicurist and podiatrist, taking care of my fingernails and toenails, because my weak left hand is incapable of cutting the nails of my right hand, and I cannot bend forward enough to deal with my toenails.

Lisa maintains she does nothing special and it is all part of being my wife. She says she does it because she loves me. Well, I can see her point, but I also have my own opinion: The additional work of a carer requires something more than a wife; it needs a Superwife. Yes, it involves love too, the type of love that involves being prepared to do anything. Lisa is such a Superwife with that deep, committed love. I am so blessed to have her by my side.

How does your wife, husband or partner care for you? I’d love to hear and share your story.

This article, written by me, was first published by Multiple Sclerosis News Today.

strap-new

ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

2 Comments »

Disabilities: Government warned forced activities ‘could make health worse’

orange

Plans for people with disabilities to be forced to undertake ‘mandatory activities’, even though they have already been assessed as being unfit for work, is being opposed by disability groups such as the MS Society.

It is good to see the society urging the UK government to scrap plans, included in the Green Paper Improving Lives, that would require people in the support group of Employment and Support Allowance (ESA) to participate in those activities or risk facing cuts to their benefits.

disabilityThe ‘Green Paper’ is a supposed consultation document that sets out what the government calls its 10-year vision for helping people with chronic conditions – who can and want to – find and stay in work. It also includes other areas, such as health and changes to disability benefits.

In a statement issued on Friday, the MS Society said: “We’re really concerned about changes to disability benefits proposed in the Government’s Green Paper on work, health and disability. And we let them know in our detailed response today.”

Society policy manager Laura Wetherly said: “The government must recognise that many people with MS simply can’t work because of their condition and may not be able to return to work in the future. For these people, work has become impossible and in some cases could actually make their health worse.

“Putting pressure on people already deemed unfit for work won’t help their condition improve, will only make the system more stressful for them, and won’t help to close the disability employment gap. We’re urging the Government to make the welfare system make sense – the most vulnerable people need to be properly supported.”

According to the government’s own figures, of the people with MS claiming ESA, 92% are in the support group and are currently people not expected to carry out any work-related activity.

The MS Society says its January survey of more than 1,300 people with the disease revealed:

  • Almost two thirds of respondents (64%) say they are not employed.
  • Over half (53%) of this group say they would ideally like to work, but the vast majority (77%) say their MS means it’s not possible for them to work.
  • 62% of those not working feel they couldn’t return to work even with appropriate support.

According to Government figures, of the people with MS claiming ESA, 92% are in the support group. Currently people in this group are not expected to carry out any work-related activity as they tend to have the very highest support needs.

On its website, the society highlights the story of Carole Bennett, who is 58 and from Leeds, was diagnosed with MS in 2003. It says:

Around five years ago, she had to give up her job as a local government officer because her symptoms became too severe to carry on. Shortly after, she started receiving ESA.

Carole says: “I wouldn’t be able to do anything without this money – it’s my main form of income. I do very little as it is because the amount I get is only just enough to get by on. I enjoyed my job and if my health was better, I’d love to get back into work. But MS is so unpredictable – some days are better than others and I never know when I’m going to be ok. If I were forced to look for a new job now, the stress would make my symptoms worse and my life would be even harder than it is at the moment.”

I firmly believe that the plans should have no place in what, in the 21st century, should be a caring, tolerant and decent society.

strap-new

ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

No Comments »

Worry Less to Reduce Unnecessary Stress

orange
Stress is like a light that turns on when you need it. But when you can’t turn it off, you run the risk of burnout, which can impact your health, according to the U.S. National MS Society.

I often have said that I don’t suffer from stress. But, looking back at my life, there are examples of stress that weren’t recognized at the time.

stressIn fact, everyone suffers from stress from time to time, but when you have a chronic disease, such as multiple sclerosis, it can be bad news. The NMSS says: “Chronic stress weakens the immune system and increases the risk for a number of illnesses, including heart disease, diabetes, and depression. Most research studies about the effects of stress on MS have been inconclusive, but one recent study by David Mohr, PhD, at the University of California, San Francisco, found significant increases in MS relapses following stressful life events.”

Stress adds to our everyday burden and often can make MS symptoms worse. We all need to relax more and not let things get on top of us. So, what can we do about it?

First, we need to worry less. Some worry more than others. In my case, I have a simple attitude about worry. If a problem rears its head, there are two possibilities. One, it’s something I can fix, so I do. Two, it’s something I can do nothing about, so I wait until it comes to its natural conclusion. Either way, there is no point in worrying.

It works for me, maybe you’d like to try it, too.

There is no point in worrying out about things you can’t actually achieve. Instead, focus on what you can do and do well.

Most of us have things we’ve done in the past of which we might not be very proud. But it’s in the past and not worth worrying about. It is time to live for now and the future; put the past behind you, where it belongs.

Fatigue takes its toll on many us and I’d say that most people don’t realize what that is. They think we are talking about being tired. However, those closest to us know the truth and will readily accept that we feel too bad to join in whatever has been planned. They also know that you cannot always go out to dinner or whatever. To avoid undue pressure and stress, we all need to learn that it’s OK to say “no.”

There are those who say that exercise is good for us and that it helps to de-stress us. No doubt that’s true, but exercise is not possible for everyone with multiple sclerosis. It all depends on individual capabilities. That’s why it is essential that we each choose an exercise program that we can follow and enjoy.

One last thing: It is important to exercise our minds, as well as our bodies. Quizzes, puzzles, reading, a hobby – these all help keep our minds active.

This article, written by me, was first published by Multiple Sclerosis News Today.

strap-new

ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

No Comments »

More flock to accuse disability assessors of lying

orange

Isn’t it amazing how the number of people who choose to speak out about injustices multiply once the first reports are published

Many more disabled people have come forward to describe how the healthcare professionals who assessed them for the UK government’s disability benefits lied in the reports they compiled. The benefits are paid to people with many different disabilities including multiple sclerosis.

Their evidence further confirms the results of a two-month Disability News Service (DNS) investigation, which revealed last week how assessors working for the outsourcing companies Capita and Atos – most of them nurses – had repeatedly lied, ignored written evidence, and dishonestly reported the results of physical examinations.

disability-news-serviceHaving seen the first revelations of the DNS, more personal independence payment (PIP) claimants have come forward with their own evidence of dishonest assessors.

The second DNS report said:

One PIP claimant, who has impairments including ME, fibromyalgia and a heart condition, has described how his disability living allowance (DLA) award of the higher rates for both care and mobility was lost after his PIP assessment left him with zero points (a claimant needs eight for the PIP standard rate and 12 for the enhanced rate).

He remembers his assessor telling him when she arrived at his home and he asked if she knew anything about ME and fibromyalgia: “I’ve dealt with a couple of people with yuppy flu before.”

He said: “When I received the assessor’s report I thought it was for another person as it contained so many omissions, inaccuracies and conjecture. There were also several instances of fabrication.”

Information from his previous applications for incapacity benefit, DLA and employment and support allowance (ESA), and his successful appeal decisions for DLA and ESA at tribunal, had been omitted from her report.

David told DNS: “The report states I carried out tiptoe and ‘balancing on each foot’ tests and had no problems walking. I did not walk a step and did not carry out the tests described.

“The report states that I turned around in my chair and picked up a bottle of medicine from the surface behind me – the surface behind me was an oven hob and all my medication was on the table in front of the assessor.”

When he described how his medication had sent him to sleep in his back yard, the assessor claimed that he said instead: “I wonder [sic]round the fields outside my house,” while being able to open a ring-pull can was interpreted as “able to prepare a meal”.

He is appealing the decision, and is complaining about his assessor to the Nursing and Midwifery Council.

David said: “Since receiving the report, the consequences of dealing with the complaints procedure and making another tribunal appeal have been a noticeable deterioration in my health and have put a strain on both my wife’s and my own mental health (loss of peace of mind, anxiety, knocks to self-confidence and a feeling of being discriminated against because of the nature of my disability).”

Many other claimants came forward and told similar stories.

A DWP spokeswoman told the DNS:

“We expect the highest standards from the contractors who carry out PIP assessments.

“We do not accept it to be the case that there is dishonesty amongst them.

“As we said, we are committed to making sure the PIP assessment process works fairly and effectively, which is why we welcome independent reviews such as the ones led by Paul Gray, the second of which is expected in April 2017.

“Anyone not happy with their benefit decision can ask for it to be looked at again, and then appeal to an independent tribunal.

“There is also a comprehensive complaints procedure in place for claimants who are not happy with the service they have received from providers.”

So many tales of wrongdoing, yet the government department does not accept there is dishonesty among its contractors’ assessors. What is wrong? It is high time that government ministers and civil servants opened their eyes, ears and put whatever brains they have to good use. In fact, the evidence exists, they just need to approach it with open minds. It is time for action not complacency or denial.

strap-new

5 Comments »

MS, Combined with Flu, Had Me on the Floor Again

orange

MS, Combined with Flu, Had Me on the Floor Again

One thing we do know, though, is that influenza can make us feel worse. MS Society sites around the world agree the flu pushes up our temperature and can make symptoms flare up. And, for those who experience relapses, an infection like the flu can trigger one.

Having progressive MS, relapses are not part of my life, but my symptoms certainly can flare when I am hit by an infection.

And that is exactly what happened over the weekend when I finally succumbed to the same flu that my wife had been suffering from for a few days.

I suppose my two most obvious symptoms are problems with mobility and balance and these certainly were much worse at the height of infection. I fell getting out of my armchair and again in our bathroom, both times taking many minutes to get back onto my feet as my strength deserted me in my time of need. If it had not been for the physical help provided by Lisa, my loving wife, my time on the floor likely would have been much longer.

After my second fall, she insisted that I sit in our bathroom chair, which is on wheels. Although still unwell herself, insisted on pushing me between living room, bathroom and bedroom. She said her motives were a little selfish as it was easier to push me about than help me recover from another fall.

Flu jab protection?

So, if the flu can have such a bad effect, should we take advantage of the protection offered by have the annual flu jab?

Well, when I lived in the U.K., I used to follow the advice of doctors and the country’s MS Society that recommends that people with MS have a seasonal flu jab every autumn. It says: “This is before the flu season starts around November. But it’s still worth having one later than that. Carers and partners can get a flu jab too.”

But that is in the past. No more jabs for me.

Why the change? Let me assure you that it is nothing to do with efficacy of the vaccines or their general safety for most people.

Instead, it is all about their safety for me. Regular readers may recall that in October I spent time in Moscow having medical tests at the A.A. Maximov center that provides HSCT treatment, including patients with MS and other autoimmune diseases.

There is no need to go into detail of what went on, but one of the key findings was that my MS lesions are all inactive and the recommendation made by Dr. Denis Fedorenko, MD, to minimize the risk of reactivating them, was that I should have no vaccines. None at all, not even the flu jab.

I want to emphasize that this is NOT advice for you. Everyone is different. Make sure you get our own medical advice.

This article, written by me, was first published by Multiple Sclerosis News Today.

strap-new

ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

No Comments »