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News and Opinions about MS, Health & Disability

It’s World MS Day, does it really matter?

Today is World MS Day. And this should be an important day for raising awareness of multiple sclerosis in countries around the globe. But that is not what is happening.

world ms dayEven though the supposedly special day is coordinated by the MS International Federation (MSIF) and has its own website, the national charities prefer to concentrate on their own activities.

Just look at the World MS Day website list of these activities:

MS Carnation Campaign, Canada

From 11-13 May, the MS Society of Canada mobilised people across the nation to support the MS Carnation Campaign for Mother’s Day.

Theatre for MS, Egypt

Throughout April, the MS Care Society Egypt raised awareness of the stigma surrounding MS and other conditions by organising theatrical performances featuring people with MS.

Book Launch: “Endless story of MS”, Slovakia

From 11-12 May, the MS Society of Slovakia marked the launch of “Endless story with MS”. It is a book full of personal stories of people with MS.

Wellness Seminar, India

On 14 May, the Mumbai Chapter of the MS Society of India (MSSI) organised an educational seminar on methods for managing MS, led by renowned medical & health practitioners in Mumbai.

Solidarity Fundraising Walk, Portugal

On 30 April, people took to the streets of Peso da Régua, Portugal, for a solidarity fundraising walk in honour of World MS Day.

As strange as it may seem, the fact is that not one of those activities is being held on World MS Day itself. The website does not list any event being held today.

Additionally, major national organizations are embracing their own awareness events.

Just take a look at these examples:

  • USA – National MS Awareness Month held in March.
  • Canada -National MS Month held in May.
  • UK – MS Awareness Week held in March.
  • New Zealand – Awareness Week held in August.

With support of that magnitude, or lack of it, I really think the MSIF should drop the idea of World MS Day. Clearly, it does not have necessary international support.

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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 Features Writer with Medical News Today. 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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Social care plans ‘ignore working-age disabled people’

Campaigners are denouncing the Conservatives for ignoring the social care needs of working-age disabled people. The issue does not get a mention in the party’s manifesto for next week’s UK general election.

Conservative leader and prime minister Theresa May got in hot water last week for making a U-turn, which she called a ‘clarification’. It was over the manifesto policy on charging older people for social care.

So, the party’s social care polices now face attack on two fronts. This is because neither the original manifesto, nor that U-turn made any mention of working-age disabled people.

Disability consultant Jane Young told the Disability News Service (DNS) that the manifesto demonstrates ‘ignorance of adult social care services’.

She said: “Anyone reading it would assume that only older people use social care services, when in reality one-third of social care service-users are disabled people of working age.

“We’re left completely in the dark as to how the proposals will affect disabled people, including those who’ve had their support reduced following the closure of the Independent Living Fund.

No acknowledgement of social care role

“While disabled people’s employment is mentioned elsewhere in the manifesto, there’s no acknowledgement of the role of social care in enabling many disabled people to work.

“All we have are questions: Will there be different arrangements for working-age service-users?

“How will the proposals affect disabled service-users with mortgages, or when they sell their home and buy another?

“Will adult social care be better funded, so it can enable independent living rather than mere existence?

“After decades of well-meaning reports, culminating in the Dilnot report and the Care Act 2014, we’re once again thrown into uncertainty.

“We expect more than a manifesto that conveniently ignores us,” she said.

social care

Sue Bott of the DRUK.

Deputy chief executive of Disability Rights UK, Sue Bott, said there was “No information at all about younger people in” the manifesto.

She believes most of the public are unaware that younger disabled people had to pay for their social care.

Further, she said, the social care system is ‘grossly underfunded’, and that younger disabled people pay more in charges than older people with care needs. This is because older people are allowed to keep more of their money through a generous minimum income guarantee.

Bott added: “If it was realised how much  people had to pay in charges, they would be pretty outraged. It wouldn’t fit in with the ‘scroungers and strivers’ narrative.

Completely unacceptable

“The current situation [with charging]is completely unacceptable. It seems almost out of control.

“The [Conservative] narrative is ‘we are supporting the people most in need’, but they are not, because what they are doing is giving with one hand and taking away with the other in the form of social care charges.”

Asked why the manifesto makes no mention of the social care needs of working-age disabled people, a Conservative party spokeswoman told DNS: “Our manifesto has committed to making sure nobody has to sell their family home to pay for care.

“We will make sure there’s an absolute limit on what people need to pay.  And you will never have to go below £100,000 of your savings, so you will always have something to pass on to your family.”

That reply, of course, failed to answer the question, but the we cannot really expect honesty, can we?

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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 Features Writer with Medical News Today. He 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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Mixed messages about beta-interferon safety to treat MS

Research that is meaningful is essential. It is what, after all, what we need to find a cure for multiple sclerosis and other debilitating diseases.

However, a new study from the University of British Columbia, Canada, puzzles me. The study “Evaluating the safety of beta-interferons in MS” looked at potential adverse events when treating relapsing remitting MS (RRMS).

When the findings were published in Neurology, they came with a strangely conflicting narrative.

Let me explain.

Increased risk

The study found an increased risk of events such as stroke, migraine and depression, as well as abnormalities in the blood, when beta-interferon is taken for MS. The team discovered this by analysing the health records of more than 2,000 British Columbians with MS between 1995 and 2008.

beta-interferon

Professor Helen Tremlett.

So, that’s not so good. But Professor Helen Tremlett, senior author of the study, said that beta-interferons have a favourable safety profile, especially compared to the newer therapies for MS. And she added: “That is still the case; our study does not change that.

“However, very few studies had comprehensively and quantitatively assessed their safety in real world clinical practice. Our findings complement and extend on previous observations.”

Tremlett is a Professor in the department of medicine at the Djavad Mowafaghian Centre in Brain Health. She also said: “Once a drug is released on the market, there are very few ways to systematically monitor adverse events. 

“Clinical trials cannot identify all adverse effects of a drug treatment partly due to small sample sizes and relatively short follow-up periods.”

Beta-interferon research undermined?

So, the study shows that people taking beta-interferon for MS are at great risk of having a stroke, migraine and depression, as well as abnormalities in the blood. But they stress that patients and physicians should not change their treatment plans. They say that the risk to individual patients will vary greatly depending on individual factors.

To me that attitude, of ‘yes, the risks are greater but never mind’, devalues the results. In fact, to my mind, it undermines the whole study. The question I must ask is: why waste money on research if you are going to go against the results?

On the plus side, besides the negative effects, Tremlett and her colleagues made a positive discovery. They found a reduced risk of bronchitis and upper respiratory infections with taking beta-interferon for more than two years. These infections can be common and problematic for people living with multiple sclerosis.

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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 Features Writer with Medical News Today. He 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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Two new studies increase our understanding of MS

New studies may be good news for those of us living with multiple sclerosis as they increase understanding of it.

One pinpoints a mutation responsible for neurological dysfunction. Meanwhile, the second says high levels of a protein may contribute to MS progression.

study

Professor Ian Duncan.

Ian Duncan is professor of neurology in the department of medical sciences at the University of Wisconsin-Madison. He has pinpointed the cause of a serious neurological disease. The disease is very similar to multiple sclerosis, and found in a colony of rats. The study, “A mutation in the Tubb4a gene leads to microtubule accumulation with hypomyelination and demyelination (pages 690–702)”, is published in this month’s Annals of Neurology.

The human disease, called H-ABC, can affect parts of the brain. Both conditions arise from mutations in the same gene. And both abnormalities affect myelin, as seen in MS.

Professor Duncan examined the nervous system tissue from both conditions and revealed an overgrowth of tiny tubes known as mircotubulas in oligodendrocytes,. These are the cells that make myelin and deposit it on nerve fibres.

Myelin defects are also at the root of the leukodystrophies — genetic disorders that include H-ABC.

Knowing how oligodendrocytes form and maintain myelin, and how those essential processes go awry, “could open a new window of understanding on the more widespread myelin diseases,” Duncan added.

Protein may encourage MS progression

The second study found that high levels of a protein called Rab32 may contribute to the progression of MS. And this could lead to neuronal loss.

The study, “Rab32 connects ER stress to mitochondrial defects in multiple sclerosis,” was published in the Journal of Neuroinflammation.

The endoplasmic reticulum (ER) plays a part in producing new proteins, and stores calcium. ER stress is a hallmark of MS and several other neurodegenerative diseases.

Now, researchers at the University of Alberta, Canada, suggest that the ER may play a role in triggering mitochondria impairment, leading to MS.

Professor Thomas Simmen.

Thomas Simmen, associate professor in the department of cell biology, is senior author. He said: “Scientists have been pointing to the mitochondria as a possible link to MS. But they have not been able to decipher how it malfunctions. Ours is the first study that combines clinical and lab experiments to explain how mitochondria become defective in MS patients.”

Using brain tissue samples from MS patients and healthy individuals, the team quantified levels of Rab32 and monitored neuronal death.

Results indicate higher Rab32 levels have links to an increase in ER stress proteins and inflammation in the MS brain. However, virtually no Rab32 was present in brain tissue from healthy individuals.

ER stress has strong links to an increase of Rab32 and MS progression that can lead to mitochondrial impairment and neuronal death. What’s more, these findings may prove useful in designing novel strategies to prevent neuronal loss in MS.

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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 Features Writer with Medical News Today. He 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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Election 2017: Labour to reform welfare benefits and end freeze

benefits

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All three main UK political parties have put stated their plans for state welfare benefits, should they win the general election.

Of course, realistically only the existing government Conservatives or the major opposition Labour party, can win. The Liberal Democrats have no chance. I have ignored the UK Independence Party (UKIP) as polls show its support has collapsed.

Labour’s shadow chancellor (finance minister) John McDonnell says his first budget will include a package of reforms, in effect ending the present government’s freeze on benefits. The freeze on working-age benefits started in 2016, and welfare payments are capped at their current rate until 2019.

Speaking on the BBC TV’s Andrew Marr show, Mr McDonnell spoke of Labour’s proposals. He said the party ‘would ensure that in effect we would be addressing ….. how we reverse the benefit freeze itself’.

Benefits reform package

He said: “We’re putting £30bn in over the lifetime of a parliament into welfare. We’re reforming the whole process ….. and the implication will be ….. the impact of these proposals will make the freeze irrelevant.

“I want to do it as part of an overall reform package and not just pick off one by one.”

Labour leader Jeremy Corbyn said the freeze is ‘unfair’ and ‘would be ended’.

Manifesto pledges

The party’s manifesto includes pledges costing £48.6 bn, to be funded from extra tax revenue.

Labour’s manifesto also includes plans to scrap the bedroom tax and, restore housing benefit for those under 21. It includes, too, an increase in Personal Independence Payment for peole living with disabilities.

According to the Conservative manifesto, Theresa May’s party has “no plans for further radical welfare reform”. It will continue to roll-out of Universal Credit – the much-maligned single monthly payment to replace many other benefits.

The Liberal Democrats also say they’d end the benefits freeze and reverse disastrous welfare cuts made by the current government.

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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 is Features Writer for Medical News Today. He 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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Loss of spinal nerve fibres not only cause of disability in MS – new research

Disability from multiple sclerosis may be caused by more than loss of spinal nerve fibres, new research shows.

This could mean the use of MRI scans to predict disability from MS may not be as reliable as thought.

The research questions the belief that, in MS, loss of spinal axons, or nerve fibres, is the key factor in levels of chronic disability.

This has led to the wide use of MRI to measure the cross-sectional area of the spinal cord in order to predict disability. But researchers from Queen Mary University of London have now sampled spinal cords of 13 people with MS and 5 healthy controls. They found that spinal cord cross-sectional area is not a good predictor of axonal loss.

spinal cord

Klaus_Schmierer.

Results of the research “Axonal loss in the multiple sclerosis spinal cord revisited” were published in Brain Pathology on May 7.

Lead researcher Klaus Schmierer said: “The lack of association between axonal loss and spinal cord cross-sectional area significantly changes our understanding of chronic disability in MS.

Disability imbalance between MS and spinal cord trauma

“The nature of the spinal cord needs to be appreciated as a highly organised and largely autonomous network . We need to identify other factors over and above axonal loss. Factors that determine the collapse of the spinal cord network and lead to the functional deficits seen in MS.

“In spinal cord trauma, people with less than 10% of axons, may still be able to have lower limb movement. But MS patients with up to 40% of their axons retained are almost invariably wheelchair-bound, as shown in our study. So, there is clearly something happening here which we’ve yet to understand.”

Finding other factors causing the chronic disability seen in MS, it could help identify targets for new treatments.

The team’s preliminary results indicate the loss of synaptic connections in the spinal cords of people with MS is substantial. It is possible that further research could determine is this is the missing link that is driving disability.

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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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Protect Disability Benefits – No More Cuts

Signing petitions and adding my name to open letters is not really my thing That’s not to say that I never do, just that it has to be a cause with which I agree totally. Now, I find that I have endorsed two – and urge you to do the same.

With the general election getting ever closer, the UK’s MS Society, along with other members of the Disability Benefits Consortium, is inviting you to sign an open letter to party leaders, urging them to protect disability benefits. The letter calls for no more cuts in the next UK Government. 

The consortium is a national coalition of more than 80 charities and organisations. It is standing up for more than 13 million disabled people in the UK, who spend an average of £550 a month on costs related to their disability. That’s #13millionlives.

When the MS Society asked what issues matter at this election, hundreds made contact, one issue that stood out above all others – no more cuts to disability benefits.

The society’s chief executive Michelle Mitchell said: “Financial support is vital for people with MS to live independent lives and participate fully in society.

“We have a crucial opportunity to make our voice heard before the election. We’re urging party leaders to protect disability benefits from further cuts in the next Parliament.”

I have added my name, will you join me?

Add your name to the open letter to party leaders. Tell the next government to make no more cuts to disability benefits. 

To add your name, and call for no more cuts, click on this logo: 

 

no more cuts

 

In a similar vein, there is a petition started by Dorothy Jump that has so far gained more than 28,000 signatures – including mine.

It concerns indefinite awards of Disability Living Allowance (DLA). As part of the process of switching from DLA to Personal Independence Payment, the so-called indefinite awards are being reviewed; they are no longer regarded as indefinite.

Dorothy’s petition is to ‘stop the change to indefinite claim on Disability Living Allowance Benefit’.

This, I have also signed. You can join me, by clicking this logo: no more cuts

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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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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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Election: Which Party will be Best for People with Disabilities?

I have an interest in elections and politics that started more than 50 years ago. And, yes, I have delivered leaflets and even canvassed for candidates.

Today, though, I decide election by election how to vote and support the party that has policies with which I agree.

And that’s why on June 8, I shall be voting in the UK general election as someone with a disability. But who to vote for? The one that give people with disabilities a fair deal.

For the last seven years, the UK has seen nothing short of government persecution of disabled people. For the first five years it was a Conservative-Liberal Democrat coalition then, for the last two, the Conservatives alone.

Regretfully, there is no sign of a change of heart.

labourNow, let’s look at the official opposition; the Labour Party.

The party’s manifesto has not been published yet, but a copy of the draft has been leaked. And what it contains is revealing.

For the many not the few

Titled “For the Many not the Few”, the leaked draft says:

Labour will act immediately to end the worst excesses of the Conservative government’s changes. We will:

  • Scrap the punitive sanctions regime.
  • Scrap the bedroom tax.
  • Reinstate housing benefit-for-under-21s.
  • Scrap bereavement support payment cuts.

We will also review the cuts to work allowances in Universal Credit, and also review the decision to limit tax credit and Universal Credit payments to the first two children in a family.

The Tories haven completely failed on their promise of making work pay, of tackling the barriers to work faced by disabled people.

Labour supports a social model of disability. People may have a condition or an impairment but are disabled by society. We need to remove the barriers in society that restrict opportunities and choices for disabled people.

We will build on the previous Labour government’s commitment to disabled people in 2009 as signatories to the UN Convention on the Rights of Persons with Disabilities, and incorporate it into UK law.

Labour: Social Security Bill

Labour will repeal the following cuts in social security support to disabled people through a new Social Security Bill published in our first year of office to:

  • Increase ESA by £30 per week for those in the work-related activity group and repeal cuts in UC LCW (Limited Capability for Work Element).
  • Uprate carer’s allowance by £11 to the level of Jobseekers Allowance.
  • Implement the court decision on PIP so that there is real parity of esteem between those with physical and mental health conditions.
  • Scrap the Work Capability and Personal Independence Payment assessments and replace them with a personalised, holistic assessment process which provides each individual with a tailored plan, building on their strengths and addressing barriers.
  • End the pointless stress of reassessments for people with severe long-term conditions.
  • Commission a report into expanding the Access to Work programme.

We will change the culture of the social security system, from one that demonises people to one that is supportive and enabling.

As well as scrapping the Conservatives’ punitive sanctions regime, we will change how Jobcentre Plus staff are performance managed.

Labour will strengthen access to justice for disabled people by enhancing the 2010 Equality Act enabling discrimination at work to be challenged. We will ensure that under the Istanbul Convention, disability hate crime and violence against disabled women is reported annually with national action plans to address these.

Decision time

I have never before used this website to urge support for one party over others.

I am not a natural Labour voter.

But, having lived through seven years of cuts and read that draft manifesto, I shall vote Labour on June 8.

If you have a vote in the UK election, join me and vote for the caring policies, vote Labour.

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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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Why are DMTs – Drugs to treat MS – Resisted by so Many?

Many people with multiple sclerosis await the launch of each new disease modifying therapy (DMT), hoping it will bring some improvement.

Meanwhile, a significant number of those in the same situation seem to ignore a new drug and carry on regardless. But why?

dmts

Different DMTs for MS can be infusions, injectables, or tablets.

Well, there are a number of reasons; let’s take a look at a few of them:

  • The newly diagnosed often delay starting treatment because they are in denial or just decide to ‘wait and see’ how the disease develops.
  • Very many of us dislike taking medications of any sort, for any ailment.
  • Others say ‘no’ after researching possible side effects before they decide that they may be riskier than the disease itself.
  • Some have a type of MS for which DMTs have little or no benefit.

Of course, there are other reasons too, such as costs, and I am not decrying those.

I fully understand the ‘wait and see’ approach, especially at diagnosis, when symptoms may not be too bad. But research tells us that it is one of the worst choices that can be made. And that is equally true of clinically isolated syndrome (CIS) that can lead to MS.

DMTs: Better to start treatments early

Healthline.com explains: “Experts recommend starting one of the DMTs approved by the Food and Drug Administration as soon as a diagnosis is made. A study published in the Journal of Neuroscience Nursing, found that patients with MS or CIS benefit from starting treatment the first time they experience an event suggestive of MS.”

It continues: “Other research has found that delays in treatment, even in those with CIS, may result in more severe disability and a poorer response to treatment with DMTs later on.”

I think most of us resist taking ‘unnecessary’ medications and there is nothing wrong with that. It’s just a case of recognising, in consultation with your doctor, which treatments are needed and which aren’t.

Now, let us turn to the vexed issue of side effects. All drugs, not just ones to treat MS, have their own list of both common and rare side effects. I recommend you discuss this with your doctor, to ensure the benefits are worth any risk. The ultimate decision, however, is yours; it is your body.

Not every type of MS responds to every DMT. Most are suitable for the relapsing form of the disease where they work to prevent relapses. Relapsing patients who go on to develop Secondary Progressive MS often continue with the same drugs. Currently, nothing exists that is more suitable without having too high a risk.

For primary progressive MS patients, there is a new DMD that is now approved as a treatment in the USA. The drug is ocrelizumab, brand name Ocrevus.

DMTs for me?

I am frequently asked what drugs I take for MS. The answer, perhaps strange but nevertheless true, is ‘none’. In fact, in the 15 years since diagnosis, I have never been offered any drug treatment. Yes, I have pills to treat various symptoms but nothing for MS itself.

To be fair, though, I do check out each new drug and its side effects and there isn’t one that I’d be happy to take. A serious side effect, death, may be rare but it is final.

Enough 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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