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News and Opinions about MS, Health & Disability

Steps to Overcoming MS but MS Society warns diet is unproven

Overcoming MS (OMS) is a popular, yet unproven, diet and lifestyle programme for people with MS. And in just under two weeks, on Sunday October 22, you can learn more about it at an OMS conference in Brighton, UK.

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Professor George Jelinek (Pic: Overcoming MS).

Overcoming Multiple Sclerosis claims to promote the integration of diet and lifestyle changes into standard medical management to improve the health and lives of people with multiple sclerosis”. Professor George Jelinek, of Melbourne, Australia, developed the OMS Recovery Programme more than 15 years ago. He received a diagnosis of MS in 1999.

OMS started in Australia and New Zealand. It is a non-profit organization and accepts no funding from the pharmaceutical industry. In 2011, it formed a charity in the UK to with the aim of making the OMS programme available worldwide.

omsThe one-day conference is to include a number of presentations These are to focus on the seven steps of the recovery programme: diet, sunlight and vitamin D, exercise, meditation, medication, preventing family members from getting MS, and doing whatever it takes to overcome MS.

Organisers say the event will be of value to anyone, whether newly diagnosed, new to OMS or someone who has already been on the recovery programme for some time.

OMS step by step

So, what’s in the OMS recovery programme? To summarise:

  • Diet and supplements
    • A plant-based wholefood diet plus seafood, with no saturated fat, as far as is practical
    • Omega-3 fatty acid supplements: Take 20-40mls of flaxseed oil daily; fish oil can be used instead if desired
    • Optional B group vitamins or B12 supplement if needed
  • Vitamin D

    • Sunlight 15 minutes daily 3-5 times a week as close to all over as practical
    • Vitamin D3 supplement of at least 5000IU daily, adjusted to blood level
    • Aim to keep blood level of vitamin D high, that is between 150-225nmol/L (may require up to 10,000IU daily)
  • Meditation

    • 30 minutes daily
  • Exercise

    • 20-30 minutes around five times a week, preferably outdoors
  • Medication

    • In consultation with your doctor, if a wait and see approach is not appropriate, take one of the disease-modifying drugs (many may not need a drug, and drug selection should be carefully weighed against side effects)
    • Steroids for any acute relapse that is distressing
    • One of the more potent drugs if the disease is rapidly progressive

The MS Society, on its website, has expressed a note of caution. It says there is no conclusive evidence of the benefits of the proposed diet, a key component of the programme. It warns that the diet may not provide enough protein and may be too low in energy.

omsThe society says: “The OMS diet recommendations are similar to the Swank diet. It advocates cutting out dairy and meat, and reducing fat intake – particularly saturated fat. It also recommends supplementation, particularly with omega 3 (in the form of fish oil or flaxseed oil) and vitamin D if your exposure to sunlight is limited.

“Research into this diet has not provided conclusive evidence of its benefits. However, as with the Swank diet, following the OMS programme is not likely to be considered bad for you.

“You should make sure you’re getting enough protein in your diet, through eating plenty of fish, beans or pulses. Likewise, the diet may be low in energy, so it may not be suitable for you if you have high energy needs or you are already underweight,” says the society.

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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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Government figures prove UN’s human catastrophe verdict

Shocking new figures underline the facts behind a UN committee’s decision to describe UK welfare benefits as a human catastrophe.

And the figures come from the government’s Department for Work and Pensions (DWP). Not that they were provided willingly. The MS Society forced them out by a freedom of information request.

During the first three years of Personal Independence Payment (PIP), people with MS have lost at least £6 million a year in benefits, according to the society. PIP started to replace Disability Living Allowance (DLA) in 2013.

The Department for Work and Pensions admitted that between October 2013 and October 2016:

  • almost one in three people (2,600) with MS who received the highest rate mobility component of DLA had their payments cut after they were reassessed for PIP.
  • nearly a quarter (800) who received the highest rate for the care component of DLA had their payments cut after being reassessed for PIP.

System doesn’t make sense

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Genevieve Edwards (pic: MS Society).

MS Society director of external affairs, Genevieve Edwards, said: “These staggering figures show how PIP is failing some people with MS who need the highest level of support.

“It doesn’t make sense that people are losing money they once qualified for, when they are living with a progressive condition.” I agree, the disease gets worse progressively, not better.

The society is rightly worried that many people no longer get what they were entitled to, and should still be able to claim. Their individual situations are no better but their care benefits have been cut.

One problem is when people are unable to explain the reality of living with MS when reassessed for PIP. And assessors, who are of dubious quality, rarely understand how unpredictable it can be.

Harder to get highest rate mobility under PIP

Additionally, it’s now also harder to qualify for the highest rate of mobility support for PIP. And that’s what you need to take advantage of the Motability car scheme.

Before the changes, under the DLA claimants wouldn’t receive the highest level of support if they could walk more than 50m. Now, under PIP, they won’t get the higher rate if they can walk more than 20m – including the use of sticks or walking aids, if needed.

Exactly what the basis of that change is, I just don’t know but it is unfair. Interestingly, on May 4 last year Baroness Altmann, then minister of state at the DWP, said in the House of Lords: “I would like to clarify what appears to be a widespread misconception regarding the differences between the mobility assessment in PIP and the mobility assessment in DLA. (See my post of May 16, 2016, Disability: There is no 20-metre rule, says minister).

“Many noble Lords have spoken of a ‘20-metre rule’, but there is no such rule. Some people believe that we have changed the assessment of a distance a claimant is able to walk from 50 metres to 20 metres. This is not the case.”

What a load of absolute codswallop.

  • Have the requirements changed between being assessed for DLA and being reassessed for PIP? YES.
  • Is the cut off for highest rate mobility payment now being unable to walk 20m instead of 50m? YES.
  • Did Baroness Altmann lie? Well by archaic tradition, she cannot be accused of lying as she made the statement in the House. She can only be guilty of “misleading the House”. It is clear, she did mislead the House.

Now, what is a non-parliamentary term for deliberately misleading the House? Let me think. Oh yes, I remember, it is LYING.

Fix this broken system, MS Society demands

The MS Society is calling on the government to urgently fix “this broken system” and ensure PIP assessments reflect the realities of living with MS. I couldn’t agree more.

“Having MS is hard enough. It shouldn’t be made harder by a system that doesn’t make sense,” said Ms Edwards.

And so say all of us. 

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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 Clinical Writer with Healthline, the fastest growing health information site. 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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MS Walk discount for early registration

Every charity associated with any kind of disease, disorder or other health issue always needs to raise money. This may be used for all-important research, much need care, or raising public awareness.

Multiple sclerosis societies in countries all over the world are no different in this respect. Their work all needs money.

The UK’s MS Society is holding one of its major fundraising events, the popular MS Walk, in September. And there is a special offer for anyone who wants to take part.

So, anyone planning to signi up to join the walk should do so by this Wednesday, that’s July 12. That way they can take advantage of a 20% discount on the cost of the registration fees. These are £15 for adults, £7 for under 18s and free for five years and under.

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Having fun at last year’s MS Walk. (Pic: MS Society).

Helen, of the society’s community and events team, says: “Registration is now open for the annual MS Walk and for one week only, we’ve got a special offer on our sign-up fees! As the offer is only open until the July 12, so you need to be quick to avoid disappointment.”

Furthermore, anyone who wants to walk, roll or stroll, every step will take the society closer to its goal.

Hundreds of MS Superstars, friends and families, will join forces in London to take in the sights and raise funds to stop MS.

Both the MS Walk’s short and medium routes are fully accessible and all three start and finish in Battersea Park. At the end of the challenge the society will celebrate everyone’s achievement with food, drinks, music and fun in the park.

The three routes are:

  • Short / 6km route – Fully accessible
  • Medium / 10km route – Fully accessible
  • Long / 20km route – Please get in touch with the society if you’d like to find out more about the accessibility of this route.

Helen continues: “MS Walk is fun for the whole family. They can walk or wheel one of three picturesque London routes on Sunday September 24.

“Last year, Paralympic swimmer and MS Society Ambassador, Stephanie Millward, walked with us. Stephanie lives with MS, and wasn’t sure about taking part.”

MS Walk ‘believe you can’

Stephanie was made an MBE in the Queen’s New Year’s Honours list. She explains: “When I was asked to attend the MS Walk, I thought ‘Me? Can I do a five, 10 or 20 kilometre walk? No chance. I would never be able to do that.’ But then I thought ‘yes – you can do anything if you believe you can’.”

If you feel inspired to join in the fun and help the MS Society turn the streets of London orange this September, register now.

And don’t forget to sign up by Wednesday to take advantage of the special offer to gain a 20% discount!

To register go to https://www.eventbrite.co.uk/e/ms-walk-2017-registration-34660345025 and use the code MSW20 to get the 20% discount.

After signing up, all participants will receive:

  • An MS Society orange t-shirt
  • An event day pack with detailed maps and information
  • An invitation to a fantastic post-event celebration in Battersea Park
  • Lots of tips and advice from the MS Society team to help them raise as much as they can
  • Support on the day from MS Society staff and volunteers

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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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Excuse me, which charity does your ribbon represent?

There are only a limited number of colours, and combinations of them, but there are many health and disability causes. That’s the reason why, for each color, there are a number of charities that use it for their publicity and fundraising activities.

Just take the orange ribbon as an example. We know that it is the colour adopted for multiple sclerosis in many countries. Additionally, orange is also used by these causes:

Confusing, isn’t it? Including MS, that’s 14 separate causes to have chosen the orange as the colour of their official ribbon.

Colours started with red

It started more than 25 years ago. The red awareness ribbon for HIV/AIDS was launched by the AIDS Ribbon Project at the 45th Annual Tony Awards ceremony on June 2, 1991.

Yes, the red ribbon was, apparently, the first ever ribbon symbol. And that led to all the rest, including the orange ribbon for MS and the renowned pink one for breast cancer awareness.

Mind you, there s nothing new about wearing coloured symbols. For example, each political party has its own colour. Parties use their colours for promotional material and election rosettes worn by party workers. What’s more, William Shakespeare wrote about coloured symbols that people wore.

In the famous English playwright’s classic Othello (Act iv, scene 3), Desdemona refer to an early version of the song “All round my hat, I wears a green willow”. The lyrics say: “If anyone should ask, the reason why I wears it, tell them that my true love is far, far away”.

Today, we have so many charities, and other causes, all trying to raise money and awareness. And there are too few colours to go round.

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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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MS takes centre stage on television soap

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soap

First, I have a confession to make, I don’t watch soap operas on television but the fact is they do attract huge and often passionate audiences.

They develop different story lines from time to time, and the newest such story in one leading TV soap in the UK is one of its main characters being diagnosed with relapsing MS.

In a recent episode of Channel 4’s Hollyoaks soap opera, set in a fictional suburb of the English city Chester, character Nancy Osborne met with her neurologist to hear the results of an MRI scan. In previous months, viewers had seen the character, played by actress Jessica Fox, experience a series of unexplained symptoms including weakness, tremor and spasms.

Nancy is a young mum in her late 20s who’s been involved in numerous main storylines since 2005. She’s married to Darren Osborne and is the deputy headteacher at Hollyoaks High.

Doubts have already been expressed about how well the television company will treat the story. Some comments on Facebook questioned if such a serious disease would be handled in the right way and if it would be true to life, but I am reassured that the programme makers are trying their very best.

The country’s leading multiple sclerosis charity, the MS Society, has confirmed that it has been consulted and has cooperated with the programme makers.

On its website, the charity says: “The scriptwriters got in touch with us to ask for advice about MS. We were happy to give them accurate information about MS and its symptoms, but we know it’s up to Hollyoaks to decide how they use our feedback.

soap

Kirsty and Lottie (Pic: Kirsty, via MS Society).

 

“We also introduced the scriptwriters to people with MS who shared their own experiences of the condition. One of the people we asked was Kirsty, who’s a 32-year-old accountant and mum to four-year-old Lottie. She was joined by her close friends, sisters Kat Garner and Vicki Bithell, whose parents have MS.”

Kirsty told the MS Society: “This was the first time I opened up to such a large group of people about how I feel about my MS.

“At one point, I got quite choked up, but we really wanted to show what it’s like living with MS and how it feels to watch someone you love battle often debilitating symptoms every day.”

It will be interesting to see how the storyline progresses and how well Nancy can cope with living with MS.

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

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MS Society Award Nominations: We All Are Stars

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Nominations are being sought for individuals and groups for the U.K.’s MS Society Awards 2017. Organizers say the awards will recognize the stars of the MS community and their contributions during 2016.

While not wishing to denigrate the awards in any way, I cannot help but feel that all of us who have, or are affected by, multiple sclerosis are stars in our own ways.

Everyone who is an MS warrior and determined never to give up is a star. Every family member caring for someone with MS is a star. Every volunteer who raises money for the cause is a star.

These awards will not find any stars better than our own, but the awards should gain some well-deserved publicity for the MS Society.

awardsCategories for which nominations are now open are:

MS Society group. This award is open to any MS Society group across the U.K.

Carer. The care and support provided by this person, who will be a family member, partner or friend, will have made a real and positive difference to the life of someone with MS.

Young Carer (under 18). The care provided by this young person, who will be a family member or friend, will have made a real and positive difference to the life of someone with MS.

Campaigner. The campaigner of the year award recognizes an inspiring individual who has campaigned to raise awareness of MS or improve policy or services for people affected by MS.

Digital media. This award is aimed at anyone (individual, team or organization) who has delivered outstanding and innovative results through digital media for the benefit of the MS community.

Employer. Judges are looking for organizations that create an excellent working environment for staff and show consistent consideration and awareness of the fluctuating nature of MS.

Fundraiser. Your nominee may have taken part in an exciting one-off activity, or have shown commitment to long-term fundraising for the MS Society over 2016. Your submission should include the amount of money they’ve raised, as well as details of how many people were involved in organizing and/or taking part in the fundraising activity.

Young Fundraiser (under 18). It’s inspiring to see young people getting involved and making a positive difference to the world. We want to recognize their achievements and encourage them to continue to be a force for change in the future.

Media. Nominations for this category will need to show how media coverage has been positive and accurate. Journalists should demonstrate how their work has impacted its audience and/or provide links to the story.

Professional. This award is open to all health and social care professionals whose work centers around people affected by MS, and improving their access to treatment, care and support.

Political Supporter. This award recognizes the work of political supporters in seeking to improve access to responsive treatment, care and support for people affected by MS. This includes all politicians who held office in 2016 across the U.K, from local to national level.

Research. This category recognizes world class research projects that are working hard to beat MS. These projects must be based in the UK.

Volunteer. This award is open to individuals or groups of MS Society volunteers. These submissions may address one or more of the following: Information, education, therapies, support, social events, advocacy, transport or anything else.

Nomination forms and guidance notes can be found on the MS Society website.

All nominations must be received by 5 p.m. on Feb. 10, 2017.

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

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

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Are you newly diagnosed with multiple sclerosis?

Just the other day, I drew attention to information available for anyone newly diagnosed with multiple sclerosis. As examples, I gave details of literature available in both the USA and the UK.

All well and good but, besides the MS Society and the MS Trust, Britain has the luxury of having a third national organization. This is called MS-UK and I left it out of my post.

ms-ukMS-UK is not so well known as the other two but it still has a role to play.

MS-UK was established in 1993, and is a national charity dedicated to empowering people with multiple sclerosis to make the most of today, and live life to the full.

It says it puts people affected by MS at the heart of its work. It provides high quality, professional services to support people living with multiple sclerosis, and listens to people affected by the disease.

The MS-UK website says: “Around 100,000 people in the UK have multiple sclerosis, and we are here to make sure that each person affected by MS has choice, control and independence.

We support anyone, which includes carers, families, and professionals, who may be affected by multiple sclerosis. So, whether you have a question about yourself or someone else, you can ask us. There are no taboo subjects at MS-UK, and we are an independent charity, so we are able to provide completely unbiased information.

Talking of information, the charity offers its own support for the newly disabled. It is a 40-page book, titled Newly diagnosed with multiple sclerosis? And it is available to download, absolutely free of charge, here.

It is a well-written and easy to read publication that sets out information in a clear and simple style.

It covers the full range of questions that anyone newly diagnosed may have, starting with ‘what is happening to me?’.

It talks about a patient’s healthcare team, getting the most out of appointments and treatment that may be received.

It touches on lifestyle and wellbeing before tackling the issue of talking about having the disease, such as discussing with family and friends as well as that ever present problem ‘Who should I tell?’

Support is vital section, including welfare benefits, practical help and answering the question ‘What is there for me?’, and details support available from MS-UK itself.

Finally, it includes a Symptom diary that new patients can use to keep track of what symptoms they experience and when.

 

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World MS Day: ‘MS doesn’t stop me’

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People with MS were challenged yesterday, as part of World MS Day 2016, to celebrate all the ways that they maintain their independence and get on with their lives.

By sharing examples of independence from lots of different countries, the Multiple Sclerosis International Federation set out to inspire people to challenge perceptions of what people with MS can and cannot do.

Here’s just a few examples received from around the world:

MS doesn’t stop me …

… applying my skills

I work part-time at a computer centre. I can choose the hours I work and manage efficiently with limited energy. Being able to continue working makes me feel independent.

… staying active

Kayaking has been massively important to me. It has not only helped my physical rehabilitation; it has aided my mental wellbeing. Without kayaking, I am not sure my body would be as strong as it is now.

… running my business

Everyone at my workplace knows that I have MS, including my clients. I’ve had to become a role model in my community because there has been no one else for me to imitate.

… having the determination to succeed

It’s important to have dreams. I’m in my last year of high school and I imagine myself becoming a successful interior designer. When I think of something I want to do, I stay focused and determined until I succeed.

being part of the family

I live in a centre which provides care for people with progressive MS. Since moving here, I am so much more independent. Now that my husband is no longer responsible for my care, I’m just part of the family and we can do nice things together.

… me empowering other people

I’ve always loved sport. Before being diagnosed with MS I was a keen footballer. I now coach a wheelchair basketball team. The most fulfilling part of it is helping other people build their confidence and find a sense of achievement.

… learning new things

I used to be a bank manager, but now I use my time to study new topics like history, astrology and painting. MS has given me the chance to do more for myself, gain knowledge and become a better person.

spending time with my daughters

Nine years ago I was diagnosed with primary progressive MS. While my wife is at work, I take care of the household duties and look after our daughters when they finish school. Continuing to feel useful is very important.

… having inner strength

I was diagnosed with MS when my children were very young, which was really hard, but I didn’t let it drag me down. MS has shown me how strong I can be.

… living my life the way I want to

Catheters have made a big difference to my independence. I can relax about doing things like going out to meet friends… It’s also a bit of a party trick. I pull it out of my handbag and get people to guess what it is!

seeing the beauty in life

We are examples of how people are living with MS. We are people on crutches, people in wheelchairs and we’re all living and working. The world doesn’t end because we have MS. We show people how they can continue to live with MS.

… getting out and about

My wheelchair is my constant companion and my assistant, helping me get from A to B. I rely on it to get me around, but I have never seen it as an embarrassment or a sign that says: “now I am disabled”.

… taking pride in my home

The little things I can do at home make me happy. I sweep the floor, dust the furniture and wash the dishes. It’s funny because I’d never done any housework before, but now I really enjoy it! I’ve learnt a lot from my MS.

 

 

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Now more Tory MPs face disability charities’ anger

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Further to yesterday’s post about Conservative MP Kit Malthouse being told by Andover and Rural branch of the MS Society that it no longer wanted him as their patron, other MPs are now feeling the heat from charitable organisations with which they are aligned.

The MPs concerned, like Mr Malthouse, voted in favour of cuts to ESA (Employment and Support Allowance) that will see many thousands of people with disabilities being new claimants of ESA, lose £30 a week, compared with current claimants in the WRAG (Work-Related Activity group), from April next year.

The Conservatives argue that stripping disabled people of financial security will incentivise them to find work quicker.

A number of Conservative MPs are coming under increasing pressure to resign their own positions as patrons for disability groups following their vote to cut disability benefits.

London Tory mayoral candidate and MP Zak Goldsmith (pictured above, left) is also facing a call from Richmond AID, a local disability charity, to explain his decision to take money off some of the poorest and most vulnerable people in society.

Lucy Byrne, chief executive of Richmond AID said in a Tweet: “Richmond AID believes that the cuts to ESA which are due to be implemented on 1st April 2017 will have a severe and detrimental impact on the lives of disabled people and will make it more difficult for people to find work.

“It must be recognised that being a disabled person means higher general expenses, for example to keep warm, travel to activities, participate in the community and travel to medical appointments. For people that are close to getting back to the workplace, add to that the cost of taxis to interviews, smart clothes for work and internet access.

“We believe this cut moves disabled people further away from the workplace and increases the social isolation of people that are already vulnerable and experiencing barriers while seeking employment.

“We are shocked and disappointed to find that both our local MPs here in the borough of Richmond (Tania Mathias and Zac Goldsmith) have voted for this cut and plan to invite both MPs to our offices to explain the impact this will have on disabled people.    Lucy Byrne, chief executive of Richmond AID.”

Dr Taina Mathias (pictured above, right), an NHS doctor, is Conservative MP for Twickenham. Zak Goldsmith is Conservative MP for Richmond Park and North Kingston, and is his party’s candidate in the London Mayoral election.

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