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News and Opinions about MS, Health & Disability

Mobility aids: Choose what’s best for you

Mobility – well, truthfully, difficulty in moving around, is something that many of us with multiple sclerosis and other disabilities must overcome.

And, for our benefit, there are numerous mobility aids on the market for us to choose. These vary from the basic walking stick, or cane, right up to the top of the range, road ready, electric power scooter.

But I want to talk about some options between those two extremes. Yes, I will restrict my comments to walkers, rollators, manual wheelchairs, electric wheelchairs, and electric scooters. You see, except for walkers, I have experience using all of them.

Standard walkers are stable, and have sturdy metal frames providing solid support. Upper body strength is required as the user lifts it off the ground every couple of steps.

Wheeled walkers have two wheels and two standard legs. This is easier to move as  the user only tilts it forward to move.

Three-wheeled rollators are ideal for using where space is limited but they don’t have facilities like a seat.

Four wheeled rollators, with two ‘steering’ wheels at the front are easy to move and have seats to use if a rest is needed. They also have baskets or other carrying capabilities. Bakes are important, especially when going up or down slopes. They can also be locked on to hold the rollators still so the user can sit safely

Manual wheelchairs come in two basic types, one where the user has to depend on caregivers to push them about. The other is where users can move themselves using the large wheels that can be self-propelled.

Electric wheelchairs add to users’ independence but are usually heavy and  need wheelchair adapted vehicles to move them about. But now there are folding electric wheelchairs that can easily fit in ordinary carsElectric scooters are available in different sizes. They also improve independence and the smallest ones can be broken down into a number of pieces to fit into cars.

I tried a self-propelled manual wheelchair from Drive Medical but found it was little use to me as I only have one good arm, so still had to rely on Lisa to push my chair. Not that she minds, but it does nothing for my independence.

Three different scooters have been tested. One was too lightweight in terms of power. One was powerful enough but just too large, and the third was just too much to break down to pack away and then reassemble to use again.

A power wheelchair came next. And that was great but it was so heavy to unload from and reload into our seven seat vehicle.

Rollators and wheelchairs

independence

Next I bought a great foldable electric wheelchair from Better Products for Disabled People – and it is wonderful. It’s so much lighter than an ordinary chair but it is still too much to unload and reload a number of times in quick succession, or if it is only for a short period of time.

rollatorsSo, this week I took delivery of a brand new four-wheeled rollator from Performance Health (formerly Patterson Medical). My verdict? It’s fantastic and yesterday it enabled me to walk to my maximum limit of about 20 yards before I sat on the built-in seat for a few minutes.  Then I got up to walk another 20 yards.

It’s easy to get out of and back into our car. Of course, for longer distances, I will continue to use my trusty wheelchair.

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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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Even a little independence is a great feeling

If you have mobility problems, getting out and about is extremely difficult. And doing so without the constant presence of a helper, assistant, or caregiver is something that is next to impossible.

As multiple sclerosis affects my left side, I cannot propel myself in a manual wheelchair. So, forget any thoughts of independence. It’s just out of the question.

But earlier this week, I managed to visit both the health centre, and a bank, in our nearest town. Alone.

independence

This is my wheelchair.

It was all thanks to my lightweight, foldable electric wheelchair. It is so compact, when folded, that it goes in the back of our car. The only trouble is that, although lightweight, because of my disability, it’s still beyond my ability to lift by myself.

So on Tuesday, after I drove the five miles to town, Lisa lifted the chair out of the car and I was quickly on my way to see the nurse. Encountering just a short delay from my appointment time, I practiced my very basic Spanish language skills, and was soon on the second leg of my journey.

Worry-free independence

It’s a fairly long but straight road from the health centre to the bank, although it is uphill and has several side roads. I negotiated all the dropped kerbs successfully, and it really felt good to be able to do all of it by myself.

In the meantime, Lisa was doing a bit of shopping without having to worry about me.

We met back at our car, as arranged. Lisa was there first and suggested we visit a nearby snack bar for a pastry and orange juice.

Finally, we returned to the car where we jointly lifted the folded chair back into the car, before I drove home.

It wasn’t a great feat, and was nothing to shout about, but doing it by myself made me feel good.

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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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New welfare boss is either loyal party stooge or genuinely uncaring

David Gauke is the new man in charge of the Department of Work and Pensions (DWP) in the UK. He has been appointed by lame duck prime minister Theresa May.

Gauke

David Gauke MP. (Picture: South West Herts Conservatives Association).

So, as the PM works on a deal with the Democratic Unionists, can we expect more compassion from the DWP? Regretfully, the answer is ‘no’.

Look at the way Gauke has voted on welfare and benefits in the House of Commons to see the truth.

Gauke’s voting record

TheyWorkForYou.com says this is how David Gauke voted:

  • Generally, he voted to reduce housing benefit for social tenants deemed to have excess bedrooms. Labour describes this as the “bedroom tax”. 11 votes for, 0 votes against, 6 absences, between 2012 and 2014.
  • He consistently voted against raising welfare benefits at least in line with prices. 0 votes for, 5 votes against, in 2013.
  • Almost always, he voted against paying higher benefits over longer periods for those unable to work due to illness or disability. 0 votes for, 13 votes against, 2 absences, between 2011 and 2016.
  • He consistently voted for making local councils responsible for helping those in financial need afford their council tax and reducing the amount spent on such support. 4 votes for, 0 votes against, in 2012.
  • Almost always, he voted for a reduction in spending on welfare benefits. 45 votes for, 1 vote against, 8 absences, between 2012 and 2016.
  • He consistently voted against spending public money to create guaranteed jobs for young people who have spent a long time unemployed. 0 votes for, 9 votes against, between 2011 and 2014.

Still no care at top?

That means David Gauke is loyal and votes as he is told by his party. Either that, or he is as genuinely uncaring as his Conservative predecessors.

Whichever is true, his appointment seems likely to prove disappointing for all who receive welfare benfits. And that includes everyone who is elderly, has a disability, has a low income, or is without a job.

Source of voting record: TheyWorkForYou.com. For an explanation of the vote descriptions please see the FAQ entries on vote descriptions and how the voting record is decided.

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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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Cambridge scientist ‘on verge of curing multiple sclerosis’

A researcher from Cambridge University, UK, has made a discovery which could lead to a cure for multiple sclerosis. What’s more, she says it can tackle other diseases too.

LIF

Dr Su Metcalfe of LIFNano (Photo David Johnson).

Dr Su Metcalfe was working at the university’s department of surgery when she made her big breakthrough. “I was looking to see what controls the immune response and stops it auto-attacking us,” she told the Cambridge News.

It all revolves around a stem cell particle called a LIF.

She explained: “I discovered a small binary switch, controlled by a LIF, which regulates inside the immune cell itself. A LIF is able to control the cell to ensure it doesn’t attack your own body but then releases the attack when needed.

“That LIF, in addition to regulating and protecting us against attack, also plays a major role in keeping the brain and spinal cord healthy. In fact, it plays a major role in tissue repair generally. It turns on stem cells that are naturally occurring in the body.”

It is a natural regenerative medicine, and plays a big part in repairing a damaged brain.

Stopping and reversing disease

“So, I thought this is fantastic. We can treat autoimmune disease, and we’ve got something to treat MS, which attacks both the brain and the spinal cord. It’s a double whammy that can stop and reverse the autoimmunity (disease), and also repair the damage caused in the brain.”

There was a problem, though. The LIF only survives outside the cell for 20 minutes before it is broken down. This meant there was not enough time to deploy it in a therapy.

The answer turns out to be nano-particles.

The particles were developed at Yale University, USA. Yale is listed as co-inventor with Su, but LIFNano has the worldwide licence to deploy them.

Su says: “Nano-medicine is a new era, and big pharma has already entered this space to deliver drugs while trying to avoid the side effects. The quantum leap is to actually go into biologics and tap into the natural pathways of the body.

“We’re not using any drugs, we’re simply switching on the body’s own systems of self-tolerance and repair. There aren’t any side effects because all we’re doing is tipping the balance. Auto-immunity (diseases) happen when that balance has gone awry slightly, and we simply reset that. Once you’ve done that, it becomes self-sustaining and you don’t have to keep giving therapy, because the body has its balance back.”

LIF clinical trials

LIFNano has already attracted two major funding awards, from drug firm Merck and government agency Innovate UK. Su has recruited chairman Florian Kemmerich and ceo Oliver Jarry, both with experience in the pharma sector. The company hopes to attract more investment, with the aim of starting clinical trials in 2020.

“The 2020 date is ambitious, but with the funding we’ve got and the funding we’re hoping to raise, it should be possible,” says Su.

What’s in store for LIFNano after MS?

“MS is our key driver at the moment, but it’s going to be leading through to other major auto-immune disease areas,” Su answers

“Psoriasis is high up on our list, and diabetes is another. Downstream there are all the dementias, because a LIF is a major health factor for the brain. So, if we can get it into the brain we can start protecting against dementia.”

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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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Time to care about elderly, disability, welfare, health, security, and more

Tomorrow, June 8, voters in the UK go to the polls elect the country’s new government. They do so by those in each of the 650 constituencies choosing one member of parliament (MP). The government is the political party that gets the majority of MPs – and people with disabilities are watching with interest.

The magic number to have an overall majority is for one party to accumulate 326 MPs. But, if no one gets that many, it will be 2010 repeated – and it is likely they will form a coalition.

Indeed, if no party achieves an overall majority, it is quite possible they could form a coalition government without party with the most MPs. That would be a first for the UK.

Gap narrowing, opinion polls say

Opinion polls have varied widely over the campaign but one thing is certain. And that is support for the ruling Conservative party is dropping continuously while the popularity of Labour, the second largest party, is growing steadily. The difference between the two was more than 20% but latest polls put the gap at between 4% and 1%.

As far as the disabled and the elderly are concerned, both Labour and the Liberal Democrats have disability-friendly policies. On the other hand, the Conservatives have nothing to offer except more cuts, pain and misery.

In 1982, I joined the Conservative party and never dreamed that I would ever vote Labour. However, my vote in this election is a vote for welfare and social care. It is a vote for the health service. A vote for people with disabilities. A vote for the elderly.

It is a vote for Labour, the number one caring party. I urge all of you who have a vote to care – and to vote Labour.

Labour: Care, cooperation and no cuts

On the issue of Europe, the UK needs a soft Brexit, , and needs to approach the negotiations with an attitude of co-operation, as promised by Labour, not Conservative confrontation. After all, there is an old saying that you catch more flies with sugar than with vinegar.

And we cannot forget crime and terrorism. Everyone is claiming they are the best to handle this, but only one party is saying that at the same time as they are cutting police budgets and the number of officers. And that’s the failed Conservatives who seem able to claim they provide a strong government when, in fact, their only strength is in making cuts that hurt ordinary people.

Tomorrow, UK electors, please vote for the best possible future for Britain and do your bit to stop five more years of the uncaring, self-serving Conservatives. Enough is enough!

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, 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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Wife who is carer is really a wonderful, loving, angel

It’s been an eventful few days for the two of us at home here in Spain.

On Saturday, nine days ago, my beloved Lisa asked me to help put the washing out to dry. It’s an easy job that I can do sitting down, so I readily agreed. The trouble was that it was not one of my best days. Thanks to multiple sclerosis, I managed to fall while walking out of the back door onto our terrace.

I still have no idea how but the nail of the big toe on my left foot was torn upright. It was 90 degrees from its usual position. There was pain and blood – and plenty of the red stuff.

carerMy wife Lisa is also my carer and is quite used to me spending time on the floor and could not see my injury, so she didn’t rush to my side. But she certainly arrived fast enough when I told her what was wrong.

In next to no time, she had stopped the bleeding and strapped up my toe. Luckily, once bandaged, the pain eased so that it only hurt if touched.

Wife and carer is an angel

A couple of days later, I visited our doctor. He removed the dressing and the nail came off with it. The wound started to bleed again but he quickly stopped it and sent me to a nurse to get it redressed. That started a series of one visit every two days, something I had to get used to here. The Spanish health service goes the extra mile to see that patients receive the best treatment.

However, these regular visits to the health centre are putting more stress on Lisa. Lifting my electric wheelchair out of, and back into, our car is a task that should not be repeated often. Meanwhile, at home, she is doing virtually all the work. She is my carer and refuses to ask me to help in case I am hurt again. In fact, while doing anything involving standing or walking is difficult, I try to do what I can.

One thing though, Lisa is always so grateful for whatever help I can give. But all she does for me makes her even more than my loving wife and carer.

She is my wonderful, loving, guardian angel who walks here on earth.

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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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Tackling wider medical subjects, not just MS

You may notice on this page that, besides running this website, I now write for Medical News Today. This is instead of Multiple Sclerosis News Today (MSNT).

And while the two titles appear similar, there is no connection. Indeed, they are published by two separate companies.

I spent 10 months recruiting and building a team of patient columnists for MSNT and its sister titles, as well as managing and editing their content. Now, I am now concentrating on writing quality specialist articles for a market leading medical publication.

Medical News Today

medical news todayAs a features writer for Medical News Today (MNT), I am producing authoritative articles, about a variety of illnesses, for the digital publication’s much-respected Knowledge Center.

Founded in 2003, MNT has established itself as a market leader for medical news. It provides concise and accurate information that stands out in the ocean of content that is health on the internet.

Content is targeted to an educated audience of both healthcare professionals and patients. The editorial team provides news from evidence-based, peer-reviewed studies, along with accurate, unbiased and informative content from governmental organisations (e.g. FDA, CDC, NIH, NHS), medical societies, royal colleges, professional associations, patients’ groups, pharmaceutical and biotech companies, among others.

All areas of health and medicine

Medical News Today produces original, timely and authoritative information from respected and credible sources. The editorial team has a strict code of practice and covers all areas of health and medicine, including rare diseases and conditions. It strives to achieve coverage across all areas of human health, and its main content areas include:

  • News content produced and curated daily by its in-house editorial team. It publishes more than 60 articles per day.
  • Reference material covering issues that you find important – produced in-house and licensed.
  • Features and in-depth investigative reporting on health and lifestyle.
  • Opinions forums – allowing you to connect with other users.

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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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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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