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News and Opinions about MS, Health & Disability

Support groups can beat loneliness and being alone

support group_editedBeing alone and loneliness may seem to be the same thing but they are not, far from it. It is just as easy to be lonely in a crowd as it is to be happy when alone.

Illnesses and diseases like multiple sclerosis can bring some of each; maybe time alone, maybe feeling lonely even if not by yourself. The good news is, though, there is something you can do. I suppose it’s a form of self-help.

Self-help? Well, yes and no. One simple answer is to realise the value of joining a local support group. These exist in countries all over the world. They bring people together who share common life experiences for support, education and mutual aid.

By belonging to such a group, you will be able to share your experiences with others living with a similar condition to yourself and learn from them how they deal the same sort of issues. You can hear about new information, gain support from others and, in return, have the chance to help others.

In fact, instead of feeling lonely or alone, the group experience can lead to you feeling empowered and more self-confident.

For a few examples, let’s quickly visit the USA, Australia and the UK.

In the USA, National MS Society self-help groups focus on support, advocacy, education, wellness or may be more social in nature.  Some groups also serve specific populations, such as young adults, parents with MS, care-partners or African-Americans.  Other groups may have a specific focus, such as physical activity, wellness or healthy living.

MS Australia’s peer support program is a great way for people affected by multiple sclerosis to connect with and support each other — both those living with the disease, and also carers, family and friends.

Giving and receiving practical and emotional support can help you understand a recent diagnosis, manage your symptoms and live well with multiple sclerosis. It’s also a great way to make new friends!

You can connect with an MS Peer Support group face to face, online, or over the phone — whatever makes you feel the most comfortable. It’s completely free to participate.

In the UK, the MS Society has branches around the UK that may have associated support groups but there also some independent local support groups. Prior to moving to Spain last year, Lisa and I regularly attended monthly sessions of MS Synergy – an independent support group operating in North Wales. I’d recommend it.

Alternatively, wherever you are in the world, if there is not suitable group near to you, you may be happy talking to people online. There is an ever growing range of website, blogs, discussion groups on Facebook, Twitter and other social media sites where people with MS can share experiences and ask questions.

Lastly, yes I have used MS as an example here but don’t think that support groups are just about the one illness. Whatever you are living with, contact your disease’s national organization and ask about support groups in your area.

 

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Benefits protest vicar’s council tax case delayed

Rev Paul Nicolson (Photo: Evening Standard)

Rev Paul Nicolson (Photo: Evening Standard).

A landmark council tax and benefits court case, in the UK, between a retired vicar and a London borough council has been adjourned, to Thursday August 4, by Tottenham magistrates.

The Rev Paul Nicolson appeared in court to defend himself against having not paid council tax of £2,800 in protest against “benefit cuts that are shortening people’s lives”.

The case was put back at the request of both sides but for different reasons.

Speaking outside the court after the seven-week adjournment, Rev Nicolson said: “l attended Tottenham Magistrates Court today to answer a summons to a liability order hearing for non-payment of £2,800 council tax to Haringey Council.

“The case was adjourned by the Magistrate at the request of both the council and myself but for different reasons. The council because they were not ready to address the issue I have raised; myself because I am awaiting the decision of the civil Appeal Court about whether they will hear my appeal against the High Court’s decision on the same issue as the one I have now raised with the magistrates.

“I am asking the council to explain why they did not raise with their auditors, Grant Thornton, the cumulative impact of benefit cuts, caps and council tax on the health and well-being of thousands of low income Haringey residents, in work and unemployment, when the council tax enforcement costs were being audited.

“I had raised the issue with Grant Thornton, Haringey’s accountants, when they were auditing the enforcement costs, now £115, that are imposed by the magistrates in bulk, sometimes 1000s at a time, on top of council tax and rent arrears and while individual’s and family’s income is stopped for three months during a benefit sanction. They replied ‘we have no remit …to opine on the impact of this policy on the well-being of those required to pay council tax’.

He said that his question is ‘Why no remit?’ when the Ministry of Justice (MoJ) and the Department for Communities & Local Government (DCLG) has guidance, issued to courts and councils. This specifically draws attention to the vulnerable circumstances of residents with a disability, the seriously ill, pensioners, single parents, pregnant women, the recently bereaved.”

What’s more, Rev Nicolson said that minister Lord Freud has written in a letter to him that “Four principles have underpinned welfare reforms. First the welfare system should support the elderly, vulnerable and disabled people…”.

And, remember, those words come from the government’s welfare reform minister at the Department of Work and Pensions.

 

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ESA mandatory reconsideration IS a waste of time

Photo: The Independent

Photo: The Independent

Mandatory Reconsideration, the extra step introduced in 2013 to be undertaken before a negative Employment and Support Allowance (ESA) decision can be appealed, is a waste of time.

That’s not just me saying that; it is based on sad facts admitted by the UK’s Department of Work and Pensions (DWP) itself. It has just released statistics that show the impact of the process on claimants of the out-of-work disability benefit.

And those figures are official confirmation that only about 10% of ESA claimants who go through the reconsideration process are successful. Compare this with 2013, then more than 40% of original decisions were overturned.

Disability Hews Service reports:

For claimants who dispute being found fit for work, the success rate is even lower, although it is not possible to calculate from the figures published so far how it has changed since October 2013.

Campaigners and benefits experts have stressed that it is not possible to draw firm conclusions from the figures because it is not yet clear how many of those claimants turned down at the MR stage went on to be successful at a tribunal.

But they suggested that the figures show the MR stage is simply delaying the benefits process, and pushing disabled people already at risk of poverty into greater hardship.

Stef Benstead, lead researcher on Beyond the Barriers, the report by the online Spartacus network that called for a replacement for the “inaccurate, unreliable and invalid” WCA, said the latest overturn rates of about 10 per cent – far lower than the more than 50 per cent of independent tribunal appeals that succeed – suggest that the MR system is not working successfully.

She said: “This suggests that the MR is functioning mostly as an additional layer of bureaucracy, with little to no positive effect on the speed of correct decision-making.

“Given the fall in numbers being assessed as fit for work, an intermediate step like the MR seems no longer necessary as an attempt to speed up the overall appeal process.

“This may be a good time to scrap the MR and return to the old system, which allowed the DWP to revise decisions before they reached tribunal and forward the remainder on directly, thus streamlining the process for the claimants.”

But she added that many more people were now being placed straight in the ESA support group after their WCA – 60 per cent – than when ESA was first introduced, which meant fewer people were having to use the appeals process.

Welfare rights expert Nick Dilworth said in a blog that the introduction of MR had led to a huge fall in the number of appeals heard by tribunals.

But he said that nearly three in five ESA appeals to tribunals were still proving successful, despite the introduction of MR.

He said his conclusion was that MR was “a total waste of time and designed to put you off appealing”, and was succeeding in this aim even though 58 per cent of those who do still appeal to tribunals are winning their cases.

A DWP spokesman said the department would not be scrapping the MR process.

He said: “The fact that nearly 90% of decisions were not overturned last year shows that in the majority of cases decision-makers are getting it right first time.

“It is important to remember that mandatory reconsiderations were introduced to make the system as fair as possible for those going through it.”

He denied that the WCA had been tightened up to make it harder to claim ESA since the beginning of 2016, and insisted that “no changes have been made to the WCA”.

Asked why there was such a low success rate for MRs when the success rate for ESA tribunals was consistently at 58%, he said: “The majority of decisions are overturned at appeal because of the claimant’s oral evidence or new written evidence is presented at the hearing.”

 

 

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From the heart – an open letter to those without MS

From the heart, this guy says all we really need to say, whether we have multiple sclerosis or one of many other diseases:

Having MS means many things change, and a lot of them are invisible. Unlike AIDS and cancer, most people do not understand even a little about MS and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand… These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day sitting on my arse, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this MS ribbonbody. I still worry about stuff and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. With a lot of diseases you’re either paralysed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, ”sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what this kind of illness does to you.

Please understand that MS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”, if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. MS may cause secondary depression (wouldn’t you get depressed if you were stuck inside for ages on end!?) but it is not created by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct – don’t you think that if I could possibly do it that I would?

Please understand that if I say I have to sit down/pee/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m out for the day (or whatever). MS does not forgive.

If you want to suggest a cure to me, DON’T. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realised that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with MS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with MS, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. He’s open to new suggestions and is a great guy, and he takes what I say seriously.

Please understand that in many ways I depend on you – people who are not sick – I need you to visit me when I am too sick to go out, I need you to shop for me, I need you to cook and clean for me, I need you to take me to the doctor, sometimes I need you to support me so I can walk to the bathroom without falling over.

Please understand that I need you on a different level too… you’re my link to the outside world, if you don’t set up my recliner in the lounge-room I can’t watch TV and if you don’t bring home a newspaper I can’t read it. If you don’t come to visit me then I won’t get to see you.

… and, as much as it’s possible, I need you to understand me.

 

Adapted by S Hamilton 2004 – taken from an article by Ricky Buchanan.

 

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Unfair PIP assessments are disgraceful and scandalous

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Personal Independence Payment (PIP), a UK disability benefit, was refused totally last week to a guy whom I knew at school in the 1960s. He is a private man and doesn’t want a fuss. He is just getting on with seeking a reconsideration before, if needed, launching a full appeal.

It’s just not right, he was receiving Disabled Living Allowance (DLA) and has got no better. In fact, he had a home assessment. No-one contacted his doctor and, he says, the assessor seemed more interested in getting away than doing her job properly. This is a scandalous way to treat people who have disabilities.

Then, yesterday, we heard of another man with a similar case. The Northern Echo told the story of a man with learning difficulties suddenly being told he is fit to work.

‘The government doesn’t care about people like me’, says Edward West, of Darlington, who has been considered unable to work for the entirety of his adult life..at the age of 44, he must now look for full time work within an hour’s commute after the Department of Work and Pensions unexpectedly declared him fit for employment.

The Northern Echo takes up the story:

Mr West lives in sheltered accommodation, has significant learning difficulties and needs the support of a carer several times a week.

The vulnerable man struggles to cope in unfamiliar situations, has mental health issues and says anxiety and distress would make a daily commute, long hours and interactions with colleagues impossible.

Edward West (Picture: The Northern Echo).

Edward West (Picture: The Northern Echo).

However, after attending his first Work Capability Assessment without professional support, he failed to score enough points to be eligible for ESA (Employment and Support Allowance).

Following a face to face assessment, a report was issued saying Mr West would need somebody with him to travel to unfamiliar places but was otherwise fit to work.

The report cited his ability to get to his GP, time spent socialising with his brother and a perceived lack of anxiety at the assessment.

It is believed the DWP did not contact Mr West’s GP or consider medical records before making a decision, expecting him to have contacted them for evidence to support his claim.

Mr West now claims Job Seekers’ Allowance (JSA) and must look for full-time work within a 60 minute commute or risk losing benefits.

An emotional Mr West said new “box-ticking”, point-scoring disability assessments mean people like him are falling through the gaps.

He said: “They didn’t speak to my GP or social worker and didn’t listen to me. The system should be scrapped, they didn’t look at my records or my past, just judged me on what I said that day. I cried when I found out and I’m really frightened, I don’t know what to do.”

Assessments like these are a disgrace ad it’s no wonder that 50 – 60% of people in this position go on to win their appeals.

 

 

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Take action against PIP

pip action

It’s time for action and time for people like me to speak out. Through this blog, I am supporting the National Day of Action against sham Personal Independence Payment (PIP) assessments which is being held in the UK on Wednesday July 13.

Writing my own Health & Disibility blog allows me the luxury of voicing my opinion – which is that those of us with disabilities of any kind, visible or invisible, should rise up against the tyranny of the Department of Work and Pensions (DWP). Join in, however you can, on July 13.

So what’s it all about? I’ll let the organisers explain:

The companies contracted by the government’s DWP to carry out assessments, Atos, Maximus and Capita,, are literally making a killing from conducting sham assessments which are seeing thousands of legitimate claimants having their benefits refused, their incomes slashed and their motability cars removed.

While the success rate at tribunal is high, between 50 and 60%, it is taking up to 6 months or longer for cases to be heard – leaving disabled people struggling unnecessarily.

Medical ‘professionals’ usually trained at public expense are deserting the NHS in order to conduct these murderous sham assessments in return for higher rates of pay.

We say that all assessments should be carried out by the treatment teams in the community, and that rather than pouring taxpayer money into the poverty pimp industry, the state should be properly funding the NHS and benefits should meet the needs of all that are eligible. It is time to step up the struggle and to demand that the corporate assessors #DoNoHarm.

There are PIP ‘consultation’ Centres across the country. If you cannot find a protest listed in your town or city, why not set one up. If you decide to do so, please send an email to mail@dpac.net.uk and we will advertise your event and send you a pack to assist with the organising.

This is also a good way to meet others who have had enough and to form resistance in your local area. This day of action has been called jointly by Mental Health Resistance Network, Disabled People Against Cuts (DPAC) and WinVisible – women with visible & invisible disabilities.

 

 

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Stem cell trial patients are leading a normal life

This is my column, today, in MS News Today. I thought you’d like to know about it:

Stem Cell MS Patients Lead Normal Life Thanks To aHSCT Procedure

People with MS who were involved in a long-term clinical trial are out and about enjoying a full and normal life with no signs of the disease. This follows their recovery from the stem cell transplants involving aggressive chemotherapy, or aHSCT as the procedure is known.

Results of the clinical study reached major news sources, including Multiple Sclerosis News Today on Friday after first being unveiled in The Lancet.

The 24 multiple sclerosis patients recruited for the trial were severely disabled but, with the exception of one who died, are now walking, working, kayaking, and skiing.

The trial is the first in the world to show complete long-term stopping of relapses of the debilitating disease and …

 

read more here: stem-cell-ms-patients-lead-normal-life

 

 

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‎Self-advocate: Take control of your own treatment

self-advocate

Becoming a self-advocate may be the best way of getting the treatment any MS patient may want.

Stem cell transplants are known as aHSCT or just HSCT, and interest in them as a therapy for MS has never been higher. First there were stories from the annual meeting of the Consortium of Multiple Sclerosis Centers at the beginning of June. Then, a week later, The Lancet published the results of the first clinical trial to prove long-term benefits of what has been a controversial treatment.

This transplant therapy is not claimed to be a cure but, having read the report and acknowledging it has dangers (as do Disease Modifying drugs), I’d say it is the nearest thing we have to a cure at the moment. But I have to emphasise I am not a doctor – my opinion is that of a career journalist who happens to live with MS.

Many neurologists seem reluctant to embrace the new therapy, possibly because it is not led by their speciality in the field of medicine. Instead it is in the hands of haematologists and oncologists because, after all, it started as a cancer treatment and does include high doses of chemotherapy.

For that or for other reasons anyone with MS may have difficulty in getting their neurologist to agree to put them forward for this process even if the talk today is all about ‘shared’ decisions.

No, there is absolutely no way that I am going to knock shared decisions – after all, that means the doctor and patient have agreed on the best way forward. If that is the case, that is great – but what if agreement is not reached and they have shared disagreement instead?

Well, people with MS have to be their own self-advocate. They need to remember that this unwanted disease is in their bodies; they have the ultimate right to determine how it should be treated.

Not everyone with MS will be suitable candidates for HSCT but, if they are, then no neurologist on Earth can be allowed to stand in their way.

With this in mind, I was interested to see the following on one of the social media:

We should all present our neurologists with a letter, stating that while they withhold HSCT from us, we consider them personally responsible for any further disease progression. Here is a first draft, for comments please? Imagine if 100,000 of these were presented!

LETTER TO NEUROLOGIST,

cc ASSOCIATION OF BRITISH NEUROLIGISTS

Dear Dr Blah-Blah,

As you know my next appointment with you is scheduled for xx/xx/16.

I am writing to advise you in advance, that I would like you to assist me in pursuing a Haematopoietic Stem Cell Transplant. I attach details of recent submission by Professor Paolo Muraro, together with commentary by Professor Gavin Giovannoni, relating to HSCT for MS being the best way to achieve no evidence of disease activity (NEDA). I am no longer prepared to take inferior disease modifying medications.

My EDSS is currently measured at x.x and I feel it is only fair to advise you, that I will be holding the neurolgogy profession including yourself, fully accountable for any further disability that accrues from this point forward. To aid with analysing any increased disability, I have today been independently filmed walking 20m, which will then be compared to future timed 20m walks.

Should you wish to bring my next appointment forward, I believe we would all consider that to be a step in the right direction.

Yours sincerely,

MS Patient

The content of that letter has been reproduced word for word and, while it may not be how I would phrase it, it makes its point – and is a great example of the self-advocate that is so needed today.

 

Related articles:

Stem cell clinical trial is real, not ‘false hope’    June 12

Long-term clinical trial Proves stem cell therapy that destroys immune system Does Stop MS    June 10

 

 

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Stem cell clinical trial is real, not ‘false hope’

stem cell therapy_edited

This blog’s story about the outcome of the long-term clinical trial of stem cell therapy was deleted from one Facebook group on the grounds that it did not wish to allow anything that would give its members ‘false hope’.

Actually, nor do I.

That is why, writing both in Multiple Sclerosis News Today and here, I very carefully kept to the findings as published in The Lancet, plus comments made afterwards.

The fact is that this was the first long-term clinical trial of the same procedure as used today in major HSCT clinics worldwide. It was a small trial but that was acknowledged by the researchers who said a larger trial was necessary.

I purposely did not say, as many journalists did, that scientists are close to finding a cure. Theaustralian.com.au said ‘Multiple Sclerosis cure very near’ while thetimes.co.uk said ‘Scientists close to a cure for multiple sclerosis’. That was not a statement made in the study’s report, nor was it claimed afterwards. I can see little justification for headlines mentioning a ‘cure’. Just one doctor, a stem cell biologist not involved in the trial described it as ‘close to being curative’.

HSCT or, more correctly, aHSCT has never been claimed to be a cure. Despite some notable anecdotal tales of the disease being reversed in some people, the therapy has only ever been claimed to stop MS progressing; to stop it getting worse.

And that is what the clinical trial proved. It said relapses were halted and MRI scans showed no new brain lesions.

The word ‘cure’ was not mentioned in the report of the trial, nor in my story about it.  So, no false hope there!

It is a shame that members of one FB group were denied the opportunity of seeing my fair and objective article on this issue.

Now, if I had wanted to court controversy or talk about ‘false hope’, I could have written about CCVI and its supposed link with MS, which is unsupported scientifically. The whole issue of CCVI still divides opinion and is, at best, unproved by any clinical trial that meets accepted standards. That may change in the future. Who knows?

 

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Long-term clinical trial Proves stem cell therapy that destroys immune system Does Stop MS

As regular readers of this blog will know, I also now write a column for MS News Today but, yesterday, I was asked to write a news story. You might be interested:

Aggressive Stem Cell Therapy Stops MS Relapses, According to Long-term Clinical Trial

JUNE 10, 2016  BY IAN FRANKS

Stem cell treatment has been proven to both halt MS clinical relapses and the development of new brain lesions over a prolonged period, according to the results of a new study.

The results, achieved in 23 out of 24 patients in a Phase 2 clinical trial, were published in The Lancet in an article titled “Immunoablation and autologous haemopoietic stem-cell transplantation for aggressive multiple sclerosis: a multicentre single-group Phase 2 trial.”

Importantly, the success was reached without the need for ongoing medication.

It is the first time that results of this form of autologous haematopoietic stem cell transplantation (aHSCT) have been trialed — using chemotherapy to completely destroy a patient’s immune system and then transplant previously harvested stem cells to reset or reboot the immune system to stop it harming the body. It is the method used in several leading clinics, including those in Russia and Mexico.

Some other centers, however, only go as far as suppressing, not destroying, the immune system. According to a recent press release, the suppression method is not as reliable, with many patients finding that …

 

To read the whole story, please follow this link: multiplesclerosisnewstoday.com stem-cell-transplants-stop-ms-long-term-clinical-trial

 

 

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