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News and Opinions about MS, Health & Disability

UK benefit cuts breach human rights, says UN

Those of us with disabilities, as well as other disadvantaged and vulnerable people, have been battling the UK government and its benefit cuts, disguised as so-called welfare reforms, and other austerity measures

Well, now we have official backing. The United Nations has confirmed that the UK’s austerity policies breach the UK’s international human rights obligations.

The UN Committee on Economic, Social and Cultural Rights has expressed ‘serious concern’ about the impact of what it calls ‘regressive policies on the enjoyment of economic and social right’s in a damning report on the UK.

pip actionOver a period eight months, the UN committee spoke with government officials, the UK human rights commissions and civil society groups. And now it concludes that austerity measures and social security reform breach the UK’s international human rights obligations.

Yes, the benefit cuts do actually breach our human rights – and the UN committee is calling for them to be reversed.

This was the Committee’s first review of the UK since 2009 and thus its first verdict on the austerity policies pursued by successive governments since the financial crash.

In a wide ranging assessment, expressed in unusually strong terms, the committee sets out the following findings:

  • Tax policies, including VAT increases and reductions in inheritance and corporation tax, have diminished the UK’s ability “to address persistent social inequality and to collect sufficient resources to achieve the full realization of economic, social and cultural rights”. The committee recommends the UK adopt a “socially equitable” tax policy and the adoption of strict measures to tackle tax abuse, in particular by corporations and high-net-worth individuals.
  • Austerity measures introduced since 2010 are having a disproportionate adverse impact on the most marginalised and disadvantaged citizens including women, children, persons with disabilities, low-income families and those with two or more children. The committee recommends that the UK reverse the cuts in social security benefits and reviews the use of sanctions.
  • The new ‘National Living Wage’ is not sufficient to ensure a decent standard of living and should be extended to under-25s. The UK should also take steps to reduce use of “zero hour contracts”, which disproportionately affect women.
  • Despite rising employment levels, the committee is concerned about the high number of low-paid jobs, especially in sectors such as cleaning and homecare.
  • The committee urges the UK to take immediate measures to reduce the exceptionally high levels of homelessness, particularly in England and Northern Ireland, and highlights the high cost and poor quality of homes in the private rented sector and the lack of sufficient social housing.
  • The UK is not doing enough to reduce reliance on food banks.

Jamie Burton is chair of Just Fair, a consortium that includes 76 national and local organisations, was quick to comment He said: “The UN’s verdict is clear and indisputable. It considered extensive evidence and gave the government every opportunity to show why its tax and policy reforms were necessary and fair. In many important respects the Government proved unable to do this.

“It is clear that since 2010, ministers were fully aware that their policies would hit lower income groups hardest and deepen the suffering of many already facing disadvantage without offering any long term gain for the pain they inflicted. We urge the government to take heed of the committee’s recommendations and commit to ensuring that it does not diminish human rights further in the UK,” said.

Trouble is, with last week’s referendum vote, the government has more on its collective mind. Expecting positive action? Don’t hold your breath.

 

 

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Do MS and Epilepsy share a link? I have both

By the time I went through various tests that led to being diagnosed with multiple sclerosis 14 years ago, epilepsy had already been part of my life since the age of 19. No-one mentioned any link.

The neurologist’s words still ring in my ears. Having already told me that MS was the diagnosis, he said: “I want you to go to Walton and have a couple more tests. It’s possible that your seizures were not epilepsy at all but were due to MS instead.”

shutterstock_330752915He explained that he looked through my medical history and then said I actually had MS since my early to mid-20s. I was now 49. After the extra checks, we met again. This time his words were no more comforting. “You do have two things wrong with your brain; you have both MS and Epilepsy.” He never thought of a link between them.

Because my brother also had epilepsy but not MS,  I never really thought that they could be related. However, they are two of the most common neurological conditions, and now researchers have found that having one may lead to higher risk for the other.

Researchers in the U.K., where I was born and lived until last year, used the entire population of England to create the largest study on this topic to date.

It is apparent that MS and epilepsy occur together more commonly than by chance. One possible explanation is that an MS lesion acts as a focus of an epileptic seizure; but other possibilities are discussed.

The researchers found that patients with MS have a significantly greater risk of developing epilepsy, and so, it is important for clinicians to be aware of the risk of epilepsy in people with MS.

Additionally, the study indicated that patients who exhibited epileptic symptoms first, like me, had a greater chance of being diagnosed with MS within 10 years.

Ok, it took 25 years for me to be given confirmation of having MS but, like many people, I had various hospital visits over the years without ever learning what was wrong. The eventual diagnosis was actually a relief; at last the illness had a name.

This study was conceived and led by Alexander N. Allen of the University of Oxford, Brasenose College, Radcliffe Square, Oxford, U.K.

The researchers analyzed two sets of data consisting of hospital admission records from the Oxford Record Linkage Study (ORLS), collected between 1963 and 1998, along with data covering all of England from 1999 through 2011.

Epilepsy and MS are fairly common conditions and would have a reasonable chance of occurring in the same person. This study was conceived to see if the two occurred more often together than expected by chance.

The research team looked for occurrences of hospital admissions for epilepsy in people after a previous admission for multiple sclerosis. This data was compared with a control group of more than 85,000 MS patients.

The researchers found a strong link between MS hospital admissions and admission for epilepsy within 10 years. The risk increased by 4.7 times in the ORLS group and 3.9 times in the all-England group.

This study also looked at admissions for epilepsy followed by admission for MS and found a 2.5 times greater risk in the ORLS group and 1.9 times greater risk in the all-England group. These researchers concluded that MS and epilepsy may occur together more often possibly because the lesions associated with MS act as a focus of an epileptic seizure.

Conclusions from the study suggested that doctors should be aware of the connection between MS and epilepsy. The findings may also help researchers come up with additional theories related to the two diseases.

 

* This study was supported by the English National Institute for Health Research and was published on December 4, 2013 in BMC Neurology.

 

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This article, by Ian Franks, first appeared in MS News Today.

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Referendum, they think it’s all over, but it isn’t yet

To Brexit or not to Brexit, that is the question hanging over the UK´s politicians at the moment. But, surely, the majority of people voted ‘Leave’ in the referendum; it must all be over bar the shouting.

Whatever that might mean for people with disabilities, whatever that might mean for the health service, whatever it may mean for anything, it is decided. That’s right, isn’t it?

Well, it is true that the referendum resulted in a Leave vote but that certainly does not need to be the end of it – because the vote was only advisory and is not legally enforceable. So, parliament could, and I stress could, decide to reject that advice.

The House of Commons has more pro-Europe MPs than antis. If a proposal to leave Europe is put to a vote, they have enough votes to defeat it. And since the referendum was such a close run race with the majority for Leave being so small, just 3.8% of those who voted, who’s to say they wouldn’t?

Other MPs are demanding a House of Commons vote to try and stop Brexit altogether. Can they do that? Well, they could but the real question is, would they?

Scottish First Secretary Nicola Sturgeon threatens to block Brexit.

Scottish First Secretary Nicola Sturgeon threatens to block Brexit.

Already, pro-Euro MPs are saying that even accepting the referendum result, the voters did not vote to leave the single market or stop free movement. These are things that need to be negotiated independently.

To me, as the vote last Thursday was only advisory, I´d question whether anyone has the right to notify the European Union of the UK´s decision to withdraw -to activate Article 50. Only Parliament has the constitutional authority to take such a step and that means that the House of Commons has to be persuaded to agree.

Another problem for the Brexit team is that Scotland voted emphatically, by 62% to 38%, to remain in Europe. Scottish First Secretary and SNP leader Nicola Sturgeon has warned that the Scottish Parliament will try and block the UK leaving the EU using an obscure legal mechanism even if it infuriates the English.

The First Minister said Brexit requires a legislative consent motion (LCM) from the Scottish Parliament as it impacts directly on Holyrood’s devolved responsibilities.

She confirmed that SNP MSPs would seek to block any such motion, even if this meant that this blocked the UK from leaving the EU, because this would reflect the overwhelming Remain vote in Scotland. Although the SNP is a minority government, a pro-Europe majority is guaranteed with the addition of six green MSPs.

Europe IN or OUT? You might have thought it’s all over – but it isn’t yet.

 

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Overwhelming support for free MS stem cell therapy

An interesting question about whether people would choose to have stem cell transplants if they were free was met with overwhelming support in a multiple sclerosis group on Facebook just four days ago.

But first, some caveats: there was nothing scientific about the sampling, it was 100% self-selecting; it was only a small group with 473 members; and those who gave opinions were somewhat limited in number. I am not trying to blow this out of proportion. It was not scientific but remains interesting. It should alse be noted that the question was asked in a general MS group – not one with any special link to stem cell treatments.

steroid infusionHaving said all that, we can get on.

The question posed was: “If you were given a chance for free stem cell (therapy), would you? Why? Or why not? Explain.”

All answers, without exception, were positive. No-one said ‘No’.

Some replied ‘Yes’ but offered no reasoning but others did give some thoughts on the matter. Just take a look at these examples:

“Yes, depending how they are expanded!”

“Yeah to see if it works.”

“Sure why not? Help appreciated in any way.”

“Yes my husband did a year ago…it worked.”

“Yes I would! I’m not going to give up. God gave me this one body, I’ll keep trying my best at working to make it work  to the best of my ability!!! I wish I knew where I could go in the US to have it done. I’d go!!!!

“In a heartbeat – other health permitting. The ‘why?’ is easy. The vast majority of people who have gone through it in places like Russia and Mexico have been delighted. Of course, there are risks but disease modifying drugs have serious risks too – just check out the worst side effects.

“My husband had HSCT1 with chemo. It was in Chicago. Before he suffered from heat exhaustion, no more. No more MS drugs. He still has balance issues but he was just about bedridden because he fell every minute. He can now play with our kids, before he couldn’t. It’s best to get it done early. So yes we are extremely happy.”

“Yes! If I don’t do something soon I’ll be completely paralyzed.”

“Yeah I’d try it what else could I lose?”2

So, there you go. A complete ‘Yes’ from everyone but do remember it is a very small group. Maybe one or more larger groups would be prepared to ask the same question.

 

 

1 HSCT or, more properly, aHSCT stands for Autologous Hematopoietic Stem Cell Transplantation therapy. This involves harvesting a patient´s stem cells and cleaning them. The patient is then given chemotherapy to kill off faulty immune cells before the clean stem cells are reinjected to ‘reboot’ the immune system.

2 As with any medical treatment (and that includes disease modifying drugs) there is always a degree of risk. However, this would be discussed with a patient before going ahead with the therapy.

 

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Tomorrow´s wheelchairs and scooters available now

Being diagnosed with a critical illness, disease or disability – in my case multiple sclerosis – is bad news. But when I was diagnosed, in 2002, it was a relief. Relief? Yes, it was a relief because, although not something anyone would wish to hear, I then knew what was wrong.

Over those years, I have become a wheelchair user. Not all the time, just when I need it. At home, I get around without one and can just about walk out to the car, if I sit down halfway. There is a low wall that meets that need.

More recently, I have graduated to an electric wheelchair and that gives me much greater independence to get about without needing to be pushed around. Problem is that these chairs are big and heavy. To transport them, a wheelchair adapted vehicle is required.

So, that got me thinking about the development of tomorrow’s wheelchairs.

I have already written about lightweight folding electric wheelchairs that can fit in the boot or trunk of a small car as well as being light enough to use to go ashore from a cruise ship when it is using tenders to move passengers to and from the port.

But there are other exciting developments too.

Technological advancements are being made all the time, so it should comes as no surprise that we now have tomorrow’s wheelchairs today. Just take a look at these:

Devices that enable paraplegics and people with disabilities to move around in a standing position. This provides better cardiovascular health, the ability to make eye-to-eye contact and the independence to reach high and low heights.

All-terrain wheelchairs (ATW) allow the user to venture out around town or get into the countryside. It can also reach where other chairs don´t dare to go. These include a beach, down muddy tracks, over grass or gravel, or along cobbled streets. The ATW can even push through snow.

A wheelchair user can even get one designed and built to suit their individual lifestyle.

Then there are the electric, powered, add-ons that can be fitted onto an existing manual wheelchair, turning it into a powered chair.

There is a multi-directional chair that allows the driver to move forward and backward, side-to-side, and diagonally as well using a hand-held control system. Extremely responsive the chair can be driven through tighter spaces quite easily.

And let´s not forget disability scooters. These come in various types and sizes including those that break down into a number if pieces to fit in a car. However, there is now a transportable folding scooter that actually unfolds and folds itself.

It´s just my opinion but I find that wheelchairs are more maneuverable than scooters as they require a larger turning circle. What´s more, I need something light, easy to fold and really compact when folded to improve my lifestyle. And that is why I have ordered one of Better Product for Disabled People´s silver chairs. Cannot wait for it to arrive.

 

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You need to read Willeke´s letter to MS

When I was just thinking of setting up this blog, roughly a year ago as the it went live on August 1, one of the people who encouraged me was Willeke Van Eeckhoutte. She, too, has MS and is herself a talented blogger about MS and much more.

Willie is Belgian but lives in Ireland. This is an excerpt from her wonderful A Letter to MS.

Multiple Sclerosis,

You’re here,

Not residing anywhere else but here, within me. Nine years and counting. Probably much longer if you really want to play dirty.

Willeke Van Eeckhoutte.

Willeke Van Eeckhoutte.

Why did you choose me when there were so many other people you could have picked? You were probably out for vengeance for working too hard and resting too little. You probably thought it would be fun seeing me cry at the bottom of the staircase when I was so tired I couldn’t climb it anymore. Did you now, did you really think it was slapstick-funny?

Have I not been living with enough illnesses already that you had to add yourself to my central nervous system like a piece of superglue Velcro? I had abdominal surgery a mere three months before you crashed into me. You took over my eyes and created new levels of pain in my body, feelings I never thought I’d have.

I saw specialist doctors who said my ears were just fine when your trigeminal neuralgia took hold of the left side of my face. My old GP thought I had severe ear infections for five months, but I knew that was the wrong answer. I went to dentists, ENT doctors and other super-intelligent human beings who had no idea what eye and facial pain even felt like.

How dare you take over my life? How dare you change my …

Now that you have a taste, you can read the whole article, just click on this link: Ireland, MS and Me. I promise you it will be worth it.

 

 

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‘New for old’ eats up the time

Yesterday was quite a day for me and meant that I did not have enough time to write a blog of the length that 50shadesofsun.com usually publishes.

The cause was the arrival of a brand new laptop computer because my last one had a damaged screen.

In fact, this was the second new laptop to arrive this week. The first one was delivered on Monday but, try as we might, neither my beloved wife Lisa nor I could get the screen to work, A call to the manufacturer’s customer services was less that satisfactory as they were more concerned with getting me to buy something than fix the problem.

We´d got the computer from Amazon in Spain, where we have lived since last November. So, I contacted the customer services via an online chat and, wow, what a difference. Katherin was brilliant. She proved to be the very epitome of customer relations; she listened, apologised, and took immediate action,

She gave me three options.Ok, one was to call the manufacturer but I had already tried that. The other two were to be sent an identical replacement or to receive a full refund. I opted for the replacement and it arrived yesterday.

Then the fun really started. We live in Spain and naturally bought the computer here. So, everything was in Spanish. But my language skills are less than perfect. No, they are basic, extremely basic.

That being the case, it took much longer than usual to get the computer set up.

Now, with Lisa´s guidance, I am almost through the set up stages and have produced this blog on the new computer. More than two hours late but better late than never.

Hopefully, normal service will be resumed tomorrow.

 

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UK referendum: Vote to protect those with disabiities

rerferendum flagsWith the biggest decision in a generation set to be decided by the people of the UK, it’s time to protect everyone with a disability in tomorrow’s referendum on the country’s future. A future that is balanced on the proverbial knife’s edge.

Yes, tomorrow is the big day, referendum day, and the opinion polls have been swinging about all over the place. That’s when all good Brits should go to the polls to vote whether the nation should Remain the European Union or to Leave it.

Many arguments have been voiced by people on both sides of the debate but only one interests me. How will those of us with disabilities get on if a Brexit takes place?

Unfortunately, a vote to Leave looks to be about the worst we could do. Whatever complaints we have about the benefit system now, and there are plenty, it is set to get worse if the UK leaves the European Union.

Politicians from both the country’s major political parties agree that the EU has helped improve British disability discrimination law. It has made sure that it covers all employers, no matter what size and gives protection to anyone associated with any person with a disability. This has really helped the country’s six million carers.

The European single market helps to open the world to disabled people, building on the Disability Discrimination Act 2005. This it does by pushing the frontiers of accessible travel, products, services and the internet.

I just cannot make any sense of the Leave campaign’s determination for the UK to go it alone in these areas. It wouldn’t mean that we’d be free, just isolated.

A joint letter to the Guardian newspaper, signed by Lord Hague and five MPs, said “Our parties will continue to take different approaches and will sometimes disagree.

“We share the belief, however, that more progress on disabled people’s freedom and opportunities will happen if we remain in the EU. As the veteran disability rights campaigner John Evans recently said of the EU referendum, ‘we want to pull down barriers, not erect them’.

As former ministers for disabled people, we are united in our view that the rights and opportunities of disabled people are best protected and advanced by the UK’s continued membership of the European Union.

The MPs who signed the letter along with Lord (William) Hague (Conservative) were: Margaret Hodge (Labour), Maria Miller (Con), Maria Eagle (Lab), Alistair Burt (Con) and Anne McGuire (Lab).

So, if you have a vote in the UK and have a disability, or care for someone who has, be sure to vote ‘Remain’ in tomorrow’s referendum. Vote ‘Remain’ to protect all of us who have disabilities.

 

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Memory of exact date of MS diagnosis

memoryMemory is a strange thing and seems to work, or not work, in the most mysterious of ways, just like the concept of God.

My earliest recollection, believe it or not, was as a baby. I can recall being left outside a shop, in my pram, while my mum went inside. Now that is unlikely to happen today. Then I can recite old car registration plates going back years and years both my dad’s and my own.

But, for quite some time, all I could do was marvel at youngsters who knew their national insurance number, the UK equivalent of the US’s social security number, off by heart. Well, at least I didn’t know mine until multiple sclerosis put an end to me going out to work in 2006. Then I had to give my number to the authorities so many times that, suddenly and unexpectedly, I knew it.

But, although I have a clear memory of significant and important dates in my life, such as birthdays and anniversaries, there is one that just won’t come to mind.

Every time there is a social media post in an MS group asking when we were diagnosed with the disease, I am amazed that so many people are aware of the exact date; day, month and year.

Why would they remember that?

My diagnosis was made in April 2002. I can remember the circumstances and what the neurologist said. And how he showed me the MRI scan proving (contrary to the belief of some people) that, unlike the Scarecrow of the Wizard of Oz, I really do have a brain.

The relief in finally knowing what was immense. Yes, you did read that correctly. Being diagnosed as having MS was not a horror; it was a blessed relief. Now I could get on with my life.

But the exact day in April 2002? I haven’t a clue. What’s more, to be honest, that does not matter. It is not something I have forgotten, it’s just a date that, at the time, was not worth remembering.

It was just the same when I was diagnosed with epilepsy back in the early 1970s. Thinking back it had to be 1972 but that’s as close as I can get. You see, to me, that date was not worth remembering either.

Now, I am waiting for my Spanish NIE, my foreigner’s identification number. We are required by law to carry that with us, but I’ll probably end up knowing it anyway. That’s life!

 

 

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New MS drug approved in USA and Europe

euro agencyA new disease modifying treatment is being considered for use in the UK following it being approved in the USA and Europe.

Already approved by America’s Food and Drug Administration (FDA), daclizumab, known as Zinbryta, has now been given the nod by the European Medicines Agency (EMA). The agency has recommended that the drug be licensed to treat people with relapsing forms of MS.

The UK’s National Institute for Health and Care Excellence (NICE) is now going to conduct an appraisal before deciding whether or not to make this treatment available on the NHS in England and Wales.

Daclizumab is injected once a month and works by reducing the number of immune cells thought to contribute to myelin damage seen in MS.  However, like all medicines, it does have the risk of side effects, some extremely rare, and not everybody gets them. Side effects include fatigue, stomach upset, infections, and impaired liver function. Serious but rare effects include what are referred to by manufacturer Biogen as ‘fatal events’.

Indeed, the prescribing information includes a boxed warning about the potential for severe liver injury, including life-threatening and fatal events. For “fatal events,” read “death.”

It also highlights other important risks of Zinbryta treatment, including inflammation of the colon (non-infectious colitis), skin reactions, and enlargement of lymph nodes (lymphadenopathy). Additional warnings include hypersensitivity reactions (anaphylaxis or angioedema), increased risk of infections, and symptoms of depression and/or suicidal thoughts. As if people with MS are not depressed already!

According to data from a phase 3 trial involving 1,841 people with relapsing remitting MS has indicated daclizumab to be more effective than beta-interferons in reducing relapses. The trial showed after 96 weeks, 73% of participants taking daclizumab were relapse-free, compared to 59% of participants taking beta-interferon.

Britain’s MS Society is planning to submit evidence to NICE as part of its Treat Me Right campaign that is calling for all licensed MS treatments to be available on the NHS to everyone eligible for them.

Treat Me Right

The MS Society is fighting for the right treatment at the right time for people with MS, whatever their situation, wherever they live.

It believes that people with MS should have fair and equal access to treatments wherever they live. But, at the moment, this isn’t happening. The aim of the campaign is to change that.

The society says: “We’re campaigning to make these goals a reality:

  • All licensed MS treatments available on the NHS to everyone eligible for them
  • Regular reviews of treatment and care by MS specialists for everyone with MS
  • Accessible information about treatment options, and support to be equal partners in decision-making, available to all people with MS

“We hope they’ll help people with MS get the right treatment at the right time.”

 

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