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News and Opinions about MS, Health & Disability

Cherish your independence but value all help

Independence is a value that we all prize and, perhaps, it’s the one that people with disabilities prize most highly.

Whatever type of disability we may have, we try to overcome it. We try, as best we can, to hold on to our independence as long as possible, sometimes beyond what is realistic.

While independence is one of those qualities that helps us be human beings, it is wrong to be discourteous when offered assistance. Even if I can manage without help, I either accept or decline politely, always saying thanks for offering.

supermarket shopping in a wheelchairFor those of us who use wheelchairs or scooters, or have problems reaching upwards, shopping in supermarkets can test our independence. Getting what we need from the highest shelves.

We reach up as high as we can, in an attempt to secure the item. However, in most cases, those pesky targets remain safely on their shelves, looking down at us with an air of defiance. Almost laughing at us.

At first, I glance around quickly to see if there is a staff member nearby. If so, they will be pleased to assist. If not, I’ll ask a fellow customer. I don’t feel shame or embarrassment, just gratitude for being handed whatever item I need. After all, I use a wheelchair because of a disability that results from MS. That’s not my fault, so no need to feel ashamed.

In one supermarket, when it is not so busy, they go even further to help anyone having problems. They have one of the staff take your shopping list and bring everything you want to the checkout. Then, once you have paid, they are happy to carry it all to your car and place it safely inside.

No shame, no guilt

When you make your own selections in the aisle and someone passes you a sought-after grocery, or other, is it any different than someone holding a door open for us? No, it isn’t. There is no need for any of us to feel guilty.

Of course, this also applies to anyone who cannot reach the topmost shelves. Also, those who are unable to bend down to reach the lowest shelves are equally in need of help.

There are, though, plenty of other people who can have problems getting what they want from those same difficult to reach shelves.

Such people may be of shorter than average adult height, they may have arthritis or another medical condition that diminishes their flexibility. Or they may be feeling the effects of being more advanced in years.

Whoever and however lacking we may be, we must cherish our independence and, at the same time, readily accept assistance. And, we must also do all we can to support others, according to the best of our abilities.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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‘Funny walk´ is disgusting reason to throw disabled customer out of store

Do you “walk funny”? I sure know that I do, whenever I try. Drop foot causes my left foot to drag and the whole effort is a struggle.

Mobility problems like this are a way of life of people with disabilities, however caused. My difficulties stem from multiple sclerosis but many of you may have Parkinson’s or a yet different disease.

Our walking issues tend to only be seen when we try to carry on as normal, and can be misunderstood. I have been mistaken for being drunk but, each time, a quick explanation that I have MS was enough.

Apparently, however, a similar explanation was not enough in one Halfords store. There, although he told the manager that he had Parkinson’s, she told him to leave. That is disgusting – and a terrible indictment of Halfords’ staff training on disability awareness.

This is how BBC News reported the story online:

Parkinson’s sufferer ejected from Halfords ‘for funny walk’

A man with Parkinson’s disease was told to leave a Halfords store for acting suspiciously by “walking funny”.

Chris Cartlidge, 51, was ejected from the shop in Trent Vale, Stoke-on-Trent, after his symptoms caused his leg to stiffen and drag on the floor.

He said when he told a shop assistant he had Parkinson’s, she replied: “I don’t care what you’ve got, I want you to leave the store.”

Halfords said it had “sincerely apologised” to him and his family.

Mr Cartlidge, who was diagnosed with Parkinson’s 10 years ago, said he had approached the shop assistant for help in finding some car parts in January.

Devastated and mortified

“I try to be as normal as possible but it’s really demeaning when people say things like that to me,” he said.

awareness

Katrina Cartlidge.

His daughter Katrina Cartlidge said she was “devastated and mortified” by the way her father was treated at the store on Springfields Retail Park.

“It’s hard to see him suffering like this,” she said, adding that he tried to “make the most of life” and remain as active as possible.

“I would never expect someone to treat my dad that way or anyone to be judged by that – by disability.”

A spokesperson for Halfords said its team “fell short of meeting our standards”.

“We are all very sorry for Mr Cartlidge’s experience and sincerely apologised to him and his family at the time for any embarrassment this misunderstanding caused.”

Whoa, ‘misunderstanding’? There was no misunderstanding. It was a complete lack of understanding of a person with a disability. Amazingly, even after she was told he had Parkinson’s disease, the store manager didn’t care and ordered him to leave. So, no misunderstanding – more a complete lack of judgment, lack of disability awareness, and lack of customer relations.

Benali Hamdache, campaign manager at Parkinson’s UK, said the charity is “calling for a little bit more awareness and a little bit more understanding”.

“We hope that Halfords can actually start by leading with an example and embrace our call to take on some training,” he added.

I fully support these views, Parkinson’s UK is really speaking for everyone with disabilities, but I must go further. Halfords needs to rigorously push disability awareness, ensure all staff have appropriate training, and monitor everyone’s adherence to it.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek medical care for any health issues and consult a doctor before starting a diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Nothing new promised by latest work and pensions secretary

The cabinet table seat of the work and pensions secretary must be fitted with an eject mechanism. Yet again, it has a new incumbent.

Indeed, in the 20 months since the sudden resignation of Iain Duncan Smith, the role has changed hands four times. And throughout that time, benefits for disabled people, including those with MS, have been under attack.

secretary

Esther McVey, new work and pensions secretary.

UK prime minister Theresa May on Monday appointed Esther McVey as the latest to run the Department for Work and Pensions. For her, it means a return to the department where she was minister for disabled people from 2012 to 2013.

So, what can we expect from the new head of the government department responsible for disability benefits? Sorry, but I can only see more of the same.

Just look back at what she did while she was in that more junior ministerial role. Freelance journalist and blogger Paul Lewis (@paullewismoney) tweeted: “As Minister for Disabled People she (Esther McVey) said 300,000 people would lose their benefits under her changes and she cut the walking test to get PIP from less than 50m to less than 20m.”

Secretary dedicated to cutting benefits

Wonderful! The new secretary of state is another Conservative politician dedicated to cutting benefits paid to disabled people. We need another change – this time a change for the better.

There have been many, many reactions to news of Ms McVey’s appointment and I see little point in repeating them all here. Instead, if you are interested in more information and comment, I would recommend taking a look at Vox Political Online.

This is an excellent blog written by left-wing journalist Mike Siver. His contribution to this story is “Esther McVey is now Secretary of State for Work and Pensions. Expect many, many deaths”.

The headline may seem to be incendiary but is, nevertheless, a timely warning. After all, less than two months ago I brought you news that spending cuts had already led to 120,000 deaths. Needless deaths.

Bearing that in mind, Sivier’s headline looks quite reasonable.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Benefit assessment contractors hiding in plain sight

Assessments of people’s applications for disability benefits in the UK, are carried out by contractors for the government. That is, of course, well known.

It is equally common knowledge that those contractors are Atos, Capita, and Maximus. Between them, they have made hundreds of millions of pounds from their contracts with the government’s Department for Work and Pensions (DWP). Quite a lucrative business, eh?

I’d say it is akin to a licence to print money at the expense, and terror, of those applying for either employment and support allowance (ESA) or personal independence payment (PIP).

Assessments, especially outcomes of face-to-face interviews with claimants, have been widely criticised – not least by tribunals that hear appeals against them.

Atos has tried to hide its involvement in PIP assessments by rebranding itself as Independent Assessment Services. It announced the change last summer. Call it what you will, though, it is still Atos Healthcare and its abysmal record – but in disguise.

But what, you may ask, is the Health Assessment Advisory Service of the grandly-named Centre for Health and Disability Assessments? Sounds as though it could be part of the government.

Assessments for benefits

The CHSA website says:

The Government provides certain benefits for people who are out of work due to long-term illness or as a result of a disability or health condition. The Government has decided that the best way to assess eligibility is through an independent health assessment under the Health Assessment Advisory Service.

Centre for Health and Disability Assessments provides the service on behalf of the Department for Work and Pensions (DWP). The contract between DWP and Centre for Health and Disability Assessments started 1 March 2015.

Healthcare Professionals from Centre for Health and Disability Assessments conduct one-to-one assessments with individuals seeking disability benefits and delivers a report to DWP. DWP then uses this information to determine a person’s benefit entitlement.

assessmentAll the way through, the website fails to mention the real identity of who or what is behind the CHDA. Then, at the very bottom, under the name of the Centre for Health and Disability Assessments, in small print it reveals ‘Operated by MAXIMUS’.

Surprise, surprise! Enough said, I think.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Be positive about living life your way

life

If you are living with a disability, or a chronic illness like multiple sclerosis, how do you choose to approach life?

Some people will say “You must” or “You must not” do this, that, or the other. But, in my opinion, they are wrong. I will only urge you to do certain things, no more. No, ‘you must’ or ‘you should’. Not from me.

We are all individuals and need to form our own opinions and make our own decisions. The human race is not an actual race, not a contest. We are each unique and do not benefit from comparison to other people.

Therefore, what follows is not a list of rules to follow. They are just things that I do, that I would urge you to consider. 

Focus on what you can do – and do it. I put what I can no longer do where it belongs. By that, I mean as a happy memory from my past.

Keep calm. By that I mean, when faced with a problem or difficulty, I think about how to overcome it. It’s important not to panic, I take my time and think my way through it.

Don’t worry too much about the future. Sure, if there is anything that can be done to make life better, then by all means I’ll do it. However, in the words of an old song, “Whatever will be, will be, The future’s not ours to see”, so there is little point worrying about it. Perhaps it would be better to consider what we do with our lives now, rather than what might, or might not, happen in years to come.

Grasp opportunities in life

Live life to the full. I grasp every opportunity that presents itself. In the past six years, I have divorced and remarried; gone to the most northern point of mainland Europe; visited Hawaii, New York, and Moscow; crossed the Atlantic by cruise ship; and moved to live in Spain. There’s an adage in the business world that is perfect for us. And that is not to see problems as insurmountable obstacles but as opportunities to be taken. In other words, turn a negative into a positive.

Live your life as you want to live. While I urge you to live positively, ultimately how you live your life is your own decision.

Accept the love of those nearest and dearest to you, and make sure you show your love for them in return. Think about it for a moment, where would we be without their support?

No man is an island, so the saying goes, and that is true. Whether or not you have a disability, isolation is not an easy choice. While I prize my independence, as I am sure you do, sometimes I do need help. You will too. At such times, we don’t need to be too independent or proud to accept assistance – or even ask for it.

Value yourself. Please don’t fall into the trap of believing that your disability makes you worthless. You do have value as an individual with your own opinions, as a member of your community

Live your life, speak your truth. While speaking out will come easer to some than others, it is important that we speak for ourselves. We need to be our own advocates; no one else can do it as well as ourselves.

Happy New Year.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Drugs, risks, spending cuts, deaths, new drugs, and so much more

As we reach the start of another year, it seems a good time for me to review the last 12 months, as seen through the eyes of 50shadesofsun.com.

January

The year began by focusing on hematopoietic stem cell transplantation (HSCT). Dr Denis Fedorenko of the HSCT centre in Moscow published a guide to the procedure.

Russian Physician’s Guide to HSCT in Moscow

people withFebruary

UK government policies grabbed my attention, along with actions regarding people with disabilities and benefits to which they are entitled.

Disabilities: Government loses tribunals, then changes rules

Disabilities: Government warned forced activities ‘could make health worse’

More flock to accuse disability assessors of lying

March

New treatments came to the fore this month. Ocrevus gained approval from the FDA, while Zinbryta got the go ahead for use in the UK.

After Long Wait, Zinbryta Gains Approval in Areas of the UK

Ocrevus: Counting Down to Expected FDA Approval

April

Allegations had been made that new disability access policies at Disney parks was discriminatory. However, a court decided that the new way of doing things was perfectly ok.

Disney Disability Access Rules Don’t Break Law, Court Rules

May

MS treatments were in the spotlight once again. Questions were being asked about the drug safety and why many people choose to avoid them.

Mixed messages about beta-interferon safety to treat MS

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

June

My attention was caught by one of the UK government contractors trying to put the chaotic assessment process behind it. It chose to change its name but that was fooling no one.

I also looked at the much valued and desired matter of independence.

Atos tries to escape its past though superficial rebranding

Even a little independence is a great feeling

July

Risks appeared on two fronts. First, death and serious injuries to patients to the use of Zinbryta being limited in Europe. Second, people with disabilities in the UK were still facing the risk of benefit cuts.

Zinbryta use restricted in Europe after a death and four serious liver injuries

Disability benefit cuts are still a real risk

August

Issues with lack of balance and mobility means that falls are a frequent reality. However, not all falls are the same.

I also looked at MS treatments and how close we might be to finding the holy grail – a cure.

Falls – the good, the bad, and the ……

Cure for multiple sclerosis: Are we close?

September

Inside criticism surfaced about mismanagement of disability benefits. Nothing new to me but good to have confirmation from within. On the same tack, the UK government department responsible for benefits was trying to hide assessment problems.

Talking of confirmation, my theory the MS is linked to glandular fever, or mononucleosis, was backed by researchers.

Department helpline worker lambasts mismanaged disability benefits system

I said it 14 months ago, now researchers agree: MS is linked to ‘mono’

DWP fights to hide WCA ‘under-performance’ and PIP assessments

October

A number of drugs were labelled ‘rip-offs’ in a new report. These included MS drug alemtuzumab.

UK government officials proved they do not understand variable conditions, such as those experienced by people with MS.   

MS therapy alemtuzumab is named a ‘rip-off’ drug, report

Disability benefits stopped because government doesn’t understand variable conditions

November

The number of people wth MS in the USA is more than double that previously thought. Could that be similar elsewhere?

We knew UK spending cuts were dangerous but now we know that they have ben responsible for needless deaths.

Nearly 1 million Americans have MS, not 400,000 as previously thought – NMSS Study

Needless deaths caused by government spending cuts

December

Great to see the doctor who first suggested CCSVI treatment could help people with MS now agrees this isn’t true.

However, shocking to see that someone assessed as ‘fit to work’ died before the appeal could be heard.

CCSVI treatment does NOT work for MS, says clinical trial

Assessment disgrace: ‘Fit for work’ man dies before ESA appeal can be heard

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Christmas, Hanukkah, Yule, or another festival – disabled or not – let’s all be happy

Season’s greetings to one and all, family, friends, neighbours, acquaintances, and all my readers alike.

If you are disabled and find this season a challenge, be sure to pace yourself. As almost 17 years have passed since I received a diagnosis of having MS, I understand it can be difficult. It is easy to get caught up with enthusiastic family members and friends. But, your health matters, so please stay in control and don’t do more than you can manage.

Papa Noel.

This time of year is full of festivities, not just Christmas which, although supposedly marking the birth of Christ, has become a secular celebration. I say ‘supposedly’ because scholars of history say he was actually born in April. Christmas was only put in December by the early church to take over from the pagan festival of yule and the birth of the sun king.

Other holidays that are celebrated widely in December include: Judaism’s Hanukkah, Buddhism’s Bodhi Day (day of enlightenment), and Kwanzaa, which is a Pan-African festival popular in the US.

And here in Spain, the 12th day of Christmas – January 6 – is the main fiesta. It is the Dia de Los Reyes, or Three Kings Day.

Three Kings Day

This is the day that the children of Spain, and other Hispanic countries, traditionally get presents for Christmastime.

While children from other parts of the world eagerly await Santa Claus on Christmas Eve night, children here look forward to the evening of January 5. Then, children leave shoes by the door in the hope that the three kings will leave gifts for the morning. Does that sound familiar?

These days, though, Santa Claus seems to be displacing the traditional Three Kings at Christmastime in Spain. Santa Claus is becoming more common, but even families that choose to embrace “Papa Noel” also tend to wait for the Kings.

three kings

Three Kings parade.

The arrival of the Three Kings on the evening of January 5 is marked throughout Spain. Melchor, Gazpar and Baltasar (the African king) appear in parades through villages, towns, and cities. These also feature floats from which locals throw handfuls of sweets to the children waiting in the streets.

Just as it is traditional for nativity scenes not to include the baby Jesus until Christmas Day, the wise men, or three kings, are added later. The images of the wise men are moved closer to Bethlehem over the Christmas season. They arrive at the stable on the 6th.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.  

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Needless deaths caused by government spending cuts

Health and social care spending cuts have led to 120,000 needless deaths over the last seven years. A report in the British Medical Journal exposed the dramatic figures.

Those are the very cuts that we with multiple sclerosis, Parkinson’s, and other diseases and disabilities, have consistently opposed.

The shocking total of the coyly named “excess deaths” is an indictment of UK governments since 2010. That includes the Conservative-led coalition of 2010-2015, the Conservative government of 2015-17, and the current one elected five months ago.

deathsBMJ Open, the online version of the journal, published a report of the paper: “Effects of health and social care spending constraints on mortality in England: a time trend analysis”. Johnathan Watkins of Pilar Research and Education, based in Cambridge, UK, was the lead author.

In its report, BMJ Open said:

The squeeze on public finances since 2010 is linked to nearly 120,000 excess deaths in England, with the over 60s and care home residents bearing the brunt, reveals the first study of its kind.

The critical factor in these figures may be changes in nurse numbers, say the researchers, who warn that there could be an additional toll of up to 100 deaths every day from now on in.

Between 2010 and 2014, the NHS in England has only had a real term annual increase in government funding of 1.3 per cent, despite rising patient demand and healthcare costs.

And real term spend on social care has fallen by 1.19 per cent every year during the same period, despite a significant projected increase in the numbers of over 85s–those most likely to need social care–from 1.6 million in 2015 to 1.8 million in 2020, say the researchers.

The spending restraints were associated with 45,368 excess deaths between 2010 and 2014 compared with equivalent trends before 2010.

Deaths related to cuts in social care funding

Most of these deaths were among the over 60s and care home residents. And every £10 drop in spend per head on social care was associated with five extra care home deaths per 100,000 of the population, the analysis showed.

These associations remained after further detailed analysis and taking account of global and national economic factors.

Changes in the numbers of hospital and community nurses were the most salient factors in the associations found between spend and care home deaths. From 2001 to 2010 nurse numbers rose by an average of 1.61% every year, but from 2010 to 2014 rose by just 0.07%–20 times lower than in the previous decade.

On the basis of the trends between 2009 and 2014, the researchers estimate that an extra 152,141 people could die between 2015 and 2020, equivalent to nearly 100 extra deaths every day.

The funds needed to close this ‘mortality gap’ would be £6.3 billion every year, or a total of £25.3 billion, they calculate.

So, Conservative cuts in social care spending have led to close to 120,000 people dying needlessly since 2010.

It’s a national disgrace.

And these figures do not include other deaths. For example, 2,400 Employment and Support Allowance claimants died within two weeks of being found fit for work. That was the figure revealed by the DWP in 2015, in response to a Freedom of Information request lodged by Mike Sivier of voxpolitical.com.

I wonder what the total is now, two years later.

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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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Sickness and disability benefit errors to cost £500m to correct underpayments

Errors in working out benefit payments mean 75,000 claimants are owed money that will cost £500m to repay. That’s an average of more than £6,000 per person.

The UK’s Department for Work and Pensions (DWP) actually found the mistakes itself. And they involve the country’s main sickness and disability benefit, the Employment and Support Allowance (ESA). People with MS claim the benefit – part of 2.5m sick and disabled who receive it.

benefit errorsAccording to the BBC, which was the first news organisation to run the story, the problem stems from assessors wrongly calculating the claimants’ incomes.

Now, I can understand occasional benefit errors being made, from time to time, but not anything on this scale. This is just not good enough.

According to BBC News, the mistakes could cost the government up to £500m to put right.

Too long to fix benefit errors

Government ministers know of the problem and claim the DWP is starting to pay the missing cash. But that is little comfort for those who have been deprived of the money to which they were legally entitled.

Apparently, the DWP discovered the mistakes last December, and has so far contacted about 1,000 of those who were underpaid. That is also not good enough.

It is now 11 months since the mistakes, that affect some 75,000 people, were detected – yet only 1,000 have been contacted. How can that be? And just how long will the department take to contact all of them and make the necessary payments?

The DWP says it is still trying to understand the scale of the problems with ESA. Well, the DWP has clearly mismanaged it, or not managed it at all.

Benefit errors of ‘historic proportions’

BBC News reports:

Frank Field, chairman of the Commons work and pensions select committee, said the problem was on a scale of “historic proportions”.

He said: “I’m still gobsmacked at the size and the nature and the extent and the coverage of people that have been wrongly impoverished by the department getting it wrong.”

The BBC understands that the errors affected people who applied for ESA between 2011/12 and 2014/15 – claimants after that date are understood to have had their benefit correctly assessed.

On top of money to be paid back, the Treasury will have to pay for the staffing and processing of repayments.

Is it really too much to expect that a country’s primary sickness and disability benefit be managed professionally and honestly? Of course, it isn’t.

Is it too much to expect that the DWP should capable of doing just that? Sadly, the evidence seems to prove that it is!

Overall, there are too many questions and not enough answers. The DWP should be ashamed of itself and its assessors. Heads should roll.

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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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I am sorry. I didn’t know you have MS, and don’t understand what it is

“Oh, I am sorry.”

How often do you hear that? I am not referring to a normal everyday apology. No, I am talking about when someone hears, for the first time, that you have multiple sclerosis, or other serious illness or disability.

Now, don’t get me wrong, I am not criticizing the other person’s response. It seems to me to be as automatic as answering “I am fine thanks,” even when you aren’t. It’s just the way we are.

understandWhat they are really trying to say is that they are sorry to hear we have MS.

However, the “I am sorry” reply made me think about people’s attitude to, and what they understand about, multiple sclerosis. Indeed, if I think back, I must admit that I knew nothing about MS when the neurologist made his diagnosis 15½ years ago. Everything I now know about the disease, I have learned since then – much of it from experience of myself and others.

Trying to explain MS, what we go through, and the fact that we all experience it differently, is not easy. So, if we who have it find it difficult to put into words what we go through, just imagine how hard it must be for someone else to understand.

Understand the challenges we face

Think of the various challenges that we may have to deal with as part of MS. There is anxiety, bladder problems, depression, fatigue, foot drop, hearing loss, and heat sensitivity, memory loss or brain fog, muscle spasms, and muscle weakness.

Then there is memory loss or brain fog, muscle spasms, muscle weakness, numbness and tingling, pain, sexual dysfunction, and vision problems.

Of course, we don’t individually experience all of these.

Also, to the uninitiated, MS is MS. They tend not to know about the relapsing, primary progressive and secondary progressive types of the disease. Furthermore, even if they have heard of the names, they are unlikely to know what they mean. And that offers us another opportunity, and that’s an opportunity for us to head down another avenue of explanation.

Some of you may tire of answering questions about how you are affected by, and how you deal with, the problems thrown up by our unwanted companion. That I can understand, but I will continue to do my best, as someone with MS and as a journalist, to answer questions that anyone may have.

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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.HH

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