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News and Opinions about MS, Health & Disability

MS bodies look for NICE support for PPMS treatment

Leading MS organisations are seeking support to gain approval for ocrelizumab (Ocrevus) to treat all primary progressive MS (PPMS). It is already approved for use against early PPMS.

ocrelizumabBoth of the UK’s MS Society and MS Trust are campaigning to get the medication approved for wider use by the country’s National Health Service (NHS). And they are seeking the support of patients, carers, and health professionals in their efforts to influence the National Institute for Health and Care Excellence (NICE).

NICE is currently assessing ocrelizumab for PPMS to decide whether it should be prescribed by the NHS in England and Wales.

The MS Society said: “We’ll be telling NICE why people with both primary progressive and relapsing MS should be able to access ocrelizumab through the NHS.

“We want to hear from people who’d like to take ocrelizumab, to support our submission to NICE.

Tell what it’s like to live with PPMS

“Do you have relapsing MS and think you’d benefit from taking it? Or, if you have primary progressive MS, can you help us tell NICE what it’s like to live with, and why the first treatment option matters to you?”

To give the society your views, you are asked to send an email here.

The MS Trust says it will be explaining to NICE why it thinks ocrelizumab should be made available on the NHS.

The trust also appealed for support. It said: “To help us make a strong case, we want to hear your experiences of living with PPMS, your views on current NHS care for PPMS and your thoughts on ocrelizumab.

“We’d like to hear from you if:

        you have primary progressive MS

        you have a different type of MS, but would like to add your views

       you are a partner / friend / relative / carer of someone with PPMS

      you are a health professional providing care for people with PPMS

“Tell us what you think by completing this short questionnaire by 14 February.”

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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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MS: Emergency hospital admissions continue to rise

Emergency hospital admissions for people with MS are rising in a major part of the UK. So says new research published by the MS Trust and Wilmington Healthcare. These admissions cause distress, and cost the NHS millions. Yet many could be avoided.

admissionsThe report shows that emergency hospital admissions for people with MS in England increased by 12.7% over the two years to 2015/16.

The latest English Hospital Episode Statistics (HES) data says there were 26,679 emergency hospital admissions for people with MS in England in 2015/16, compared to 23,665 in 2013/14, and this cost the NHS a total of £46m.

The report maintains that a large part of this emergency care could be avoided with better proactive, preventative healthcare.

Report is staggering

Some of the report’s findings are staggering. Of people with MS who had an emergency admission to hospital in 2015/2016:

  • Urinary tract infections accounted for 14% and cost £2,639 per patient;
  • Respiratory issues cost the National Health Service (NHS) a total of £5.4m;
  • Bladder and bowel related issues cost £10.4m.

The report found that 20% of 89,030 people with MS in England were admitted to hospital as emergencies in 2015/16. The average cost per admission was £1,733 and the average length of stay was 8.2 days.

Wilmington Healthcare’s Commissioning Excellence Directorate CEO Sue Thomas said: “Our latest report shows that the problems we highlighted in our original 2013/14 analysis have increased in the past couple of years. A growing number of patients with MS go to hospital for emergency care; yet many admissions could be avoided.

“Preventative care strategies for people with MS must be reviewed in order to tackle problems, such as respiratory and urinary tract infections, at an early stage to try to avert the need for emergency care. This would not only be of huge benefit to patients, it would also reduce pressure on struggling A&E departments.”

MS Trust ‘disappointed’ that admissions are increasing

MS Trust chief executive Pam Macfarlane said: “It is disappointing to see that avoidable emergency hospital admissions for people with MS have continued to rise in 2015/16.

“Last November, the MS Trust brought together partners from across the MS sector to publish the MS Forward View consensus. This showed that people with MS need a flexible blend of care, comprising disease modification and also proactive symptom management and neurorehabilitation, delivered by multidisciplinary teams.

“This is one reason why we are now funding additional MS nurses in areas of the UK where services are the most overstretched. Only with the right specialist and community based support will we reduce the need for emergency hospital care for people with MS,” she said.

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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, who 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. Diagnosed with MS in 2002, he continued to work until mobility problems made him 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. Besides that, he is a keen advocate on mobility and accessibility issues.

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Shameful that charities ‘sell out’ people with disabilites

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Several leading disability charities are being criticized, by a user-led disability group, for flirting with the Department for Work and Pensions (DWP) and  seeking to gain UK government contracts. The Disabled People Against Cuts (DPAC) said that the charities are ‘selling out’ and that there is no way that the charities could speak out strongly against DWP if they won multi-million pound contracts under the new programme. It is shameful that the charities are even considering such actions.

disabilitiesLinda Burnip, DPAC co-founder (pictured, left), said: “It is clear to everyone that organisations taking money from the government to provide services of any kind will not be in a position to campaign in any effective way against its policies on welfare reform.

“These contracts are rumoured to be worth between £2 million and £30 million and once part of propping up the system, any independence to criticise it will be lost. It is shameful that organisations supposedly existing to benefit disabled people are willing to sell them out in such an abhorrent way,” she said.

I agree with Ms Burnip and think it is disgusting  and deplorable that the ‘big seven’ disability charities – most of which are not user-led – all admit they have not ruled out seeking such contracts.

All seven have told the Disability News Service (DNS) that any contracts they win from the government will have no impact on their campaigning work, including whether they speak up about social security reform, including cuts to disability benefits and back-to-work policies for disabled people.

But their generally supportive responses to the government’s work, health and disability green paper – which was published on October 31 – could suggest otherwise. Indeed, one of them – Mind – has already been “caught lying”, according to the DNS, about its interest in seeking DWP contracts under the Work and Health Programme.

disabilities

MIND chief executive Paul Farmer is confronted by protesters.

It says: “Paul Farmer, Mind’s chief executive, told protesters on October 31 that the charity had ‘no contracts with DWP’ and that he was ‘not interested in future contracts at this stage’.

“His lies were exposed when a disgruntled employee leaked internal documents showing that Mind was applying to join a DWP framework that would allow it to bid for contracts.”

Last month, the charity’s policy and campaigns manager, Tom Pollard, joined DWP on secondment as a senior policy adviser.

Asked whether winning DWP contracts would impact on its campaigning work, Mind said that it “always speaks out about the issues that we believe impact on people with mental health problems, and we don’t enter into financial relationships which would prevent us from doing this”.

The DNS investigation came as the Charity Commission confirmed that it has written to Mind’s trustees following a complaint about the charity’s close links with the government – and about Farmer’s lies – by Dr Minh Alexander, an NHS whistleblower and former consultant psychiatrist. A Charity Commission spokesman told DNS: “The Charity Commission can confirm that a concern was raised with us regarding the charity Mind.”

The DNS contacted the other six charities. Leonard Cheshire Disability  said that it already provides services under the government’s Work Choice programme, but refused to say if it was seeking contracts under the Work and Health Programme, or if any such contract would impact on its campaigning work.

RNIB said that it was “exploring” possible involvement in the Work and Health Programme as a “specialist sub-contractor”, although only if any programme was “entirely voluntary” because “we don’t support the sanctioning of individuals’ benefits if they do not attend a programme”.

Action on Hearing Losssaid that it “may consider DWP contracts in the future”, but denied that this would impact on its campaigning work.

Scope said that it had “yet to make a decision regarding upcoming opportunities to deliver employment support but hope to make an announcement in the new year”. A spokeswoman said: “We have been and will continue to speak out on the issues that matter to disabled people.

Disability Rights UK (DR UK) said it was too early to say if it would bid for contracts, but if it did “it would likely be in partnership with other disabled people’s organisations”, and that it would “never compromise on being able to speak out about issues of welfare reform”.

Finally, Mencap’s head of employment, Mark Capper, said the charity was “disappointed” to see that the framework for the main contracts “appears to favour large businesses rather than third sector providers who can offer specialised support”, and that it would not want to be involved “unless significant changes were made to involve third sector providers”. But a spokesman added that the charity “may” consider smaller contracts “if we believe they will allow third sector providers to support people with a learning disability into employment”.

The green paper includes the possibility that DWP could in future force all sick and disabled people on out-of-work disability benefits to take part in “mandatory” activity, including those in the employment and support allowance (ESA) support group.

Leonard Cheshire Foundation, RNIB, and Action on Hearing Loss all welcomed the publication of the green paper. The other three charities were more critical, although none of them could be said to have attacked the green paper. DNS reported: “Disability Rights UK criticised elements of the green paper, pointing to its failure to announce any new incentives or requirements on employers, calling for more enforcement of the Equality Act, and warning that the government appeared to be cutting funding for employment support.

Mencap welcomed much of the green paper but was critical of the planned £30-a-week cuts to ESA, and said that the possible changes to the support group “could cause deep concern to sick and disabled people”.

Mind also welcomed parts of the green paper but, like Mencap, was critical of the support group measure, while it also criticised the government’s failure to consider “a fundamental rethink of the way conditionality and sanctions are used”.

Multiple sclerosis charities the MS Society and the MS Trust both guardedly welcomed the green paper, as I have previously reported.

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ian profile50shadesofsun.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.

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Acute shortage of MS Specialist Nurses prompts funding drive

Most people living with MS in the UK live in areas where there aren’t enough MS nurses to provide vital care and support, according to a new report.  The report published last week by the MS Trust shows that 64% of people (around 68,000) are in that situation.

Now, the trust is launching a campaign to fund new nurses in the areas of greatest need and to make sure no one has to manage MS alone.

On its website, the MS Trust says:

ms-trust-logoMS Specialist Nursing in the UK 2016 finds that there are worrying variations in support across the UK. Almost one in four people with MS lives in areas where the nurses have to care for twice the recommended numbers. But not having the right care and support when they need it can have serious consequences for the health of people with MS, and can be costly for the NHS.

MS Trust research has shown that MS nurses are absolutely crucial for the health and wellbeing of people with MS. They often work with people from the moment of diagnosis, throughout their lives with MS, providing expert information and support in making choices, particularly about their health and treatment.

“At the MS Trust we believe that MS nurses play a vital role in helping people deal with the shock of diagnosis and can help them adjust to, and manage, life with MS,” said Amy Bowen, Director of Service Development at the MS Trust.

“Our research shows that too many people are going without this specialist support – either they have no MS nurse near them, or their nurse is having to manage a caseload far in excess of the recommended sustainable number. This can have grave consequences for people with MS. They may have to rely on non-specialist support for what is a highly complex disease. And they may have to resort to using A&E services if their symptoms become worse.

“As we know, the NHS is coming under increasing strain, and MS specialist services are often not a priority. That’s why the MS Trust is stepping up to the plate with our #No1alone campaign. We have mapped services across the UK and highlighted the areas in greatest need. Now we are determined to fund, train and support new MS nurses to make a difference for thousands of people living with MS today.”

This campaign certainly deserves to succeed to ensure that everyone with MS has access to an MS Specialist Nurse, wherever they live.

 

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Help for Anyone Newly Diagnosed with MS

Being diagnosed with MS can be more than a bit of a shock at first. Yes, you finally know what you’ve got, what all those symptoms you’ve having mean, and you have heard what your neurologist told you.

Well, you may have heard, but you didn’t take it in because you weren’t actually listening. The doctor was droning on while you were lost in your own thoughts, your own despair.

helpMultiple what? Sker … what?

You leave the consulting room not knowing much at all, but grasping an information sheet to read at home.

So, once you get the name of the disease sorted out, where can you find more information? Fortunately, most countries have MS charities, or nonprofits, that publish a host of leaflets and pamphlets that can help. As an example, I looked at what is on offer to the newly diagnosed in the U.S.and U.K.

Each country has the luxury of two charities.

Newly Diagnosed with MS in the US

The National Multiple Sclerosis Society (NMSS) offers:

  • Knowledge Is Power (KIP): An educational series for people newly diagnosed with MS or those with a loved one recently diagnosed.

The Multiple Sclerosis Association of America (MSAA) also provides a “Multiple Sclerosis information” (MSi) collection, offering online educational videos, webcasts and webinars. These are easy to access through the MSAA’s website by selecting the topics of interest to you. For individuals who are newly diagnosed, or who are experiencing initial symptoms and have yet to be diagnosed, a portion of these MSi videos and webinars may be particularly helpful. These include:

Newly diagnosed with MS in the UK

On the other side of the Atlantic, the MS Society (MSS) has published the booklet, “Just Diagnosed – an Introduction to MS,” available in English and a number of other languages.

The information is for anyone who either has just been, or is in the process of being, diagnosed with MS.

The MSS website says: “You also could be the partner, relative or friend of someone who’s received this diagnosis. You may be experiencing a huge range of emotions, among them anger, shock, fear or even relief (especially if it has taken some time to be diagnosed).

“It’s likely that you also have hundreds of questions, many of which you don’t know who — or how — to ask. While we can’t promise that we can provide all the answers here, this booklet aims to give you an introduction to MS and to provide the means for you to seek the information and support you need.”

The booklet is also available in audio format.

Alongside the society, the MS Trust (MST) says it can provide as much information as is needed, either at diagnosis or later. It says: “You may feel emotional and probably have lots of questions. The MS Trust can help you.”

The MST also has other information if you’re concerned that your symptoms might be MS, or have been diagnosed with clinically isolated syndrome (CIS).

Here is a list of available information from the MST:

So, if you are newly diagnosed with multiple sclerosis, or are caring for someone who is, remember you are not alone. Fear of  the unknown can be terrible, but there is plenty of information prepared especially for you.

This article, written by me, first appeared on Multiple Sclerosis News Today.

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Ian Franks
Ian Franks is our Chief Columnist and Patient Specialist at Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which 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 and uses his skills to write his own flourishing specialist MS, Health & Disability blog at www.50shadesofsun.com. 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.
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Delays in Seeing Specialists a Growing Barrier to MS Diagnosis and Treatment

Ian FranksIan Franks is Multiple Sclerosis News Today’s Chief Columnist and Patient Specialist. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which 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 and uses his skills to write his own flourishing specialist Health & Disability blog at www.50shadesofsun.com. 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.

 

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Striving to make MS care fair

Pic: MS Trust

Pic: MS Trust

An ambitious project has been launched by the UK’s MS Trust with the most welcome aim of making sure that everyone affected by multiple sclerosis can access the best possible care.

MS care is changing. As already featured in a previous blog (click here), a new consensus on treatment for people with relapsing remitting form of the illness recommends that people receive treatment with a disease modifying therapy (DMT) as soon as possible after diagnosis. It also recommends that treatment should be closely monitored, and, if there are still signs of disease activity, a switch to a different, more effective treatment should be considered.

This new approach to treatment is the latest step in 20 years of progress in treating people with relapsing remitting MS, which has seen new drugs become available and specialist MS services developed. However, the MS Trust believes that implementing the new approach is likely to be extremely challenging. It says:

 

From our work with MS specialist teams we know that MS nurses, neurologists, physiotherapists, occupational therapists and other health professionals do a brilliant job and are hugely valued by people with MS. However, we also know that many specialist nurses, for example, have to manage far larger caseloads than is ideal or sustainable.

The new recommendations for MS treatment are likely to put even more pressure on MS specialist services. Somehow already stretched services will have to find more time to administer and monitor drug treatment for more people.

The organisation also wants to ensure that everyone has fair and equal access to treatment. It is right to have concerns because the availability of treatments through different local health authorities has become known as the ‘postcode lottery’ – and then there are people with other types of MS:

We also know that around half of the people living with MS in the UK – around 50,000 people – have progressive forms of MS, and there are no DMTs currently licensed for progressive MS. If specialist services are increasingly focused on drug treatments, will these people miss out on vital care? We know that people with progressive forms of MS have complex needs and really benefit from access to multidisciplinary MS teams comprising physiotherapists, occupational therapists and others. How do we make sure that they can access these services when they need them?

These concerns about the future of MS care, and making sure that everyone affected by MS has equitable access to MS specialists, are the reasons behind our MS Forward View project.

It all looks to be thought-out and very well planned. It includes:

  • Working with MS specialists, NHS managers and commissioners, and people with MS, to find ways to make the best use of resources and skills to make sure specialist services work for everyone.
  • Looking at how MS services currently work, what mix of professionals works best at delivering care for people with MS, and how it might measure what equitable care looks like in practice.
  • At the end of the project, producing an action plan for improving access to MS care which it hopes will be adopted by services across the UK, and result in a better deal for everyone affected by MS.

 

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Opinions are divided over suitability of stem cell transplants as treatment for progressive MS

panorama Hallamshire%20web%20ready ms-trust-logo          From left: BBC programme Panorama, Royal Hallamshire Hospital; and Multiple Sclerosis Trust.

Great interest was stirred up, quite predictably, by Panorama programme Can you stop my Multiple Sclerosis? broadcast on January 20. That followed four patients with relapsing remitting MS as they underwent Autologous Haematopoietic Stem Cell Transplantation (AHCST or HCST) therapy at the Royal Hallamshire Hospital, in Yorkshire, UK. See my earlier blog post Can Multiple Sclerosis be stopped? Maybe some can at http://50shadesofsun.com/?p=1347 for more details.

Afterwards, some asked whether the stem cell treatment would also work for people with primary or secondary progressive MS.

Opinions seem divided. The people behind the treatment featured on BBC’s Panorama say: “Unfortunately the trials performed to date show that AHSCT does not work as well in primary and secondary progressive multiple sclerosis. In view of this data, at Sheffield Teaching Hospitals NHS Trust we are only treating people with relapsing remitting multiple sclerosis.”

However, writing on The MS Trust’s Facebook page, Gwen Higgs gave a different answer to that question. She wrote: “HSCT absolutely works for progressive MS! I had successful HSCT for my PPMS eighteen months ago.” Then Gwen added these links: https://www.facebook.com/groups/hsctppms/?ref=bookmarks and https://www.facebook.com/groups/ukhsct/?ref=bookmarks

On its website, the Multiple Sclerosis Trust was a little more cautious, saying that AHSCT could work for those with the progressive variants of the illness and published a blog by Jane of its Information Team. In that, she looks at some of the research so far, what’s possible now and where we might expect to see further progress in the future.

Answering the question ‘does AHSCT work for progressive MS?’, Jane says: “Sometimes it does, although it seems to work well only if your MS has a mix of progression with inflammatory activity.” Read more here: https://www.mstrust.org.uk/news/views-and-comments/could-stem-cell-therapy-work-progressive-ms

Looks like it is another case of ‘wait and see’!

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