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News and Opinions about MS, Health & Disability

Stem cell treatment helps people with MS, Phase 1 clinical trial

Stem cell treatment improved neurological symptoms of 75% of people with multiple sclerosis in a Phase 1 clinical trial, say researchers in the USA.

Results were so encouraging that they prompted the team, at Tisch MS Research Center of New York, to start a Phase 2 trial. This is to allow them to assess further the safety and effectiveness of the therapy.

I must say that it is important to remember that this stem cell treatment is NOT HSCT. Importantly, the treatment being trialed does not involve suppressing and rebuilding the autoimmune system. Instead, this trial involves injecting mesenchymal stem cell-derived nerve cell progenitors directly into the spinal canal.

The study, “Phase I Trial of Intrathecal Mesenchymal Stem Cell-Derived Neural Progenitors in Progressive Multiple Sclerosis,” was published in the journal EBioMedicine.

In the open-label trial (NCT01933802):

  • 80% of patients had secondary progressive MS (SPMS);
  • Half were unable to walk at the beginning of the study. They had Expanded Disability Status Scale (EDSS) scores of 7 or higher;
  • Eight required assistance to walk. They had EDSS scores of 6 to 6.5;
  • Two were able to walk without assistance. They EDSS scores between 3.5 and 5.5.

Stem cell treatment led to improvements in neurological symptoms of 75% of the patients. The condition of 10% worsened, 15% remained the same.

Interestingly, 70% of the patients had better muscle strength after the treatment, mainly in the lower limbs.

Of those who were able to walk when the trial began, 40% improved their scores on a measure of exercise capacity — the timed 25-foot walk test — by at least 20%. Additionally, those who couldn’t walk at the start were later able to complete the walk test with assistive devices.

Disability scores improved

Researchers say that those who responded to the treatment improved their disability scores by 0.5 to 2.0 EDSS points.

Other key points of the trial were:

  • The stem cell treatment improved the bladder function of half the patients with a problem. Some were able to stop taking their bladder medications.
  • There were no serious adverse effects associated with the therapy. About 85% of the patients experienced headaches and fever in the first 24 hours after the treatment. Doctors managed these with standard medications.
  • The treatment consisted of three injections of stem cells derived from the patients, administered three months apart. Patients received antibiotics to reduce the risk of infection.

Dr Violaine Harris.

Researchers used fresh cells, rather than cells preserved by refrigeration, and say this may have contributed to the good results.

Senior research scientist at the Tisch center, Dr Violaine Harris said: “The protocol we created allowed for delivery of these stem cells within 30 minutes of harvesting” them.

Dr Saud A Sadiq.

Tisch center’s director and senior author of the study, Dr Saud A Sadiq added that the Phase 1 results “justify the initiation of a planned FDA-approved Phase 2 trial in a larger group of patients.

“We anticipate that these novel studies may form the therapeutic basis of reversing disability in patients with MS, and if successful, these studies could have positive implications for treating other neurological diseases,” he said.

Researchers are now seeking to recruit about 50 patients with primary progressive or secondary progressive MS for the Phase 2 trial (NCT03355365). Patients must have an EDSS between 3 and 6.5. For additional information, click here.

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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 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 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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Care cuts: Did they hasten Anne’s death?

An investigation is under way, looking into the cuts of all care services to a 64-year-old disabled woman. Those cuts allegedly led to her death just days later.

According to a story by Zoe Drewett, of metro.co.uk:

An urgent investigation has been launched by Portsmouth City Council into the death of 64-year-old Anne Savidge after 18 care agencies contracted to look after her were cancelled days before Christmas.

The severely disabled former midwife was unable to leave her bed to eat, drink, or go to the toilet, but was left to fend for herself at her home in Southsea, Portsmouth. Her care was axed on December 10 last year amid claims she had been verbally abusive to staff.

care

Geoff Holt, a disability rights campaigner, pictured with Anne Savidge (Picture: Geoff Holt).

Six days later she was rushed to hospital, where she died on December 21.

The revelation was made by disabilities campaigner Geoff Holt, who was a friend of Ms Savidge and has now sparked an urgent investigation by the city council.

During an impassioned speech at a recent Portsmouth City Council meeting, Mr Holt described the shocking conditions his friend lived in in the days before her death.

He was quick to apportion blame, saying:

“I am in no doubt whatsoever Anne’s lack of care over that period was to blame (for her death).

Metro continued:

Conservative councillor Donna Jones, leader of Portsmouth City Council, said she was shocked to hear of Ms Savidge’s death.

“The first I have heard about this terrible, horrific incident of this lady’s passing was just then in those comments by Mr Holt,” she said at the meeting last week.

“I think it is right and proper the council does carry out an investigation and that we do look into the circumstances to find out exactly what has happened.”

I am not going to comment further on this sad case, the truth will come out soon enough.

Similar problem handled differently

However, it has prompted me to think back to a case in which I had direct involvement a few years ago.

Margaret (not her real name) was disabled with severe problems caused by Chronic Obstructive Pulmonary Disease (COPD).

According to copdfoundsation.org, COPD is an umbrella term used to describe progressive lung diseases. These include emphysema, chronic bronchitis, refractory (non-reversible) asthma, and some forms of bronchiectasis. This disease is characterized by increasing breathlessness.

Care was given to Margaret during four visits of professional carers every day.

  1. Getting her out of bed, bathing and dressing her. Giving her breakfast.
  2. Preparing her lunch.
  3. Preparing her dinner.
  4. Getting her ready for bed and settling her down for the night.

Additionally, any personal needs were dealt with during visit.

Despite her diagnosis, Margaret continued to smoke and drink and thought of her carers more as servants, there to do her bidding. Of course, they were there to do a job involving allocated tasks, not whatever extras she felt they should do for her.

Unfortunately, refusal often offends – and Margaret lashed out verbally many times. In short, she was abusive.

The local council’s social services department did all it could but, eventually, every care agency it used refused to visit.

To try to help, I attended one case conference with social services, medical professionals, and Margaret. Everything was open to discussion, we explored all the difficulties and possible solutions.

We ended with a compromise. I made Margaret understand that the carers only did the tasks that were set for them, and she was not to abuse them. In return, the council agreed to fund two carers per visit, to which one care agency agreed to provide the necessary service.

And, there were no further problems.

Footnote: Margaret has since succumbed to her illness and died. But this was despite moving into sheltered housing and receiving care right to the end.

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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 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 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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Amazing! People with disabilities do not trust benefit claims assessments

Who’d have thought it? People with disabilities have a pervasive lack of trust in the method of assessing welfare benefit claims, say MPs.

Assessments produced by companies were ‘riddled with errors and omissions’, says the House of Commons Work and Pensions Select Committee. Those companies are contractors Atos, Capita, and Maximus.

That’s just what campaigners and commentators have said, over and over again. We don’t trust them.

A stark figure considered by the committee is that, since 2013, 290,000 rejected claims for Personal Independence Payment (PIP) or Employment and Support Allowance (ESA) have been granted on appeal.

The cross-party committee noted that the Department for Work and Pensions (DWP) has spent hundreds of millions defending decisions. Decisions which had been made on the basis of reports by private contractors.

In its report PIP and ESA Assessments, the committee said quality targets set for the companies had been ‘universally missed’. Further, it recommended that ministers should consider taking the process back in-house and not renew contracts in 2019 and 2020.

The committee says it received an ‘unprecedented’ number of responses from PIP and ESA claimants.  Nearly 4,000 people gave ‘shocking and moving, credible and consistent’ accounts of the failings of the system.

No trust in assessors

Surprise, surprise! The recurrent complaint was that they did not trust the companies’ non-specialist assessors to note evidence of their conditions accurately.

Other findings included:

·        Assessors were viewed as ‘at best lacking in competence and at worst actively deceitful’, while many claimants reported experiencing ‘a great deal of anxiety and other deleterious health impacts’.

·        One claimant was said in her assessment report to walk her dog, despite not owning one and being barely able to walk at all.

·        Another, who remained in bed throughout her interview at home, was reported to have risen from a chair ‘without any difficulty’ even though the only chair in the room was the one the assessor was sitting in.

not trusted

Frank Field MP.

Committee chairman Frank Field said system shortcomings cause “untenable human costs to claimants and financial costs to the public purse”.

He said: “No-one should have any doubt the process needs urgent change.”

The report says face-to-face assessments should be recorded, and a copy sent to the claimant along with the assessor’s report. Claimants should not just receive notification of the DWP’s decision which they currently receive.

Mr Field said it “beggars belief” that assessments are not already routinely recorded. It was “bewildering” that the DWP had resisted this step.

He added: “The current contracts have not made the system fairer, have not made it more transparent and have not made it more efficient. The existing contractors have consistently failed to meet basic performance standards. The Government should be prepared to take assessments in-house.”

Whether a more fundamental overhaul of welfare support for disabled people is required “remains open”, the committee said.

Respect and dignity

A DWP spokesman said: “As the Work and Pensions Select Committee highlights, assessments work for the majority of people.

“However, our aim has to be that every person feels they are treated fairly, with respect and dignity.”

The spokesman said DWP had already accepted more than 100 recommendations from five independent reviews of the Work Capability Assessment and commissioned two independent reviews of PIP assessments.

All three assessment companies agreed to comment.

A Capita spokesman said: “We remain firmly committed to delivering a high-quality service for people applying for PIP, and fully recognise the importance and sensitivity of our role in providing assessments. All of our qualified healthcare professionals are fully trained and are dedicated to delivering professional and empathetic assessments for all claimants.”

A spokesman for the Maximus-operated Centre for Health and Disability Assessments said: “Since we took over the contract in March 2015, we have set out to improve the experience at every stage for those attending assessments.

“We have delivered year-on-year improvements across the service, hiring more medical professionals, halving the time people spend in the assessment process and hitting the large majority of quality targets.

“In January 2018, we achieved all of our quality standards. We take the findings of this report very seriously and remain fully committed to making further improvements.”

A spokesman for Independent Assessment Services – formerly known as Atos Healthcare – said: “We are extremely conscious of the important role we perform within the claimant process, which is why our focus has consistently been on providing a professional and compassionate assessment service.

“We have also looked at continually improving by listening to claimant feedback, which has led to a number of improvements.”

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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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Assessment denies disability benefit to woman with rare disease because she has a degree

NOTE: This post is relevant to all people with disabilities who may wish to claim PIP or ESA benefits. Read on whether your disability is a result of one of many diseases such as multiple sclerosis, Parkinson’s or another illness, or has another cause.

 

PIP assessments, and the people that carry them out, are flawed. We know that, even official papers released by the government show it.

Astoundingly, it now seems that assessors believe that more highly educated you are, the less you need to be paid disability benefit. What an absolutely crazy idea – as if education or a degree can have any effect on how we are affected by our disabilities.

Those of us with disabilities, whether caused by one of a number of illnesses or injury, won’t be surprised. We are used to absurdities of obtaining the appropriate benefits.

Having said that, before you doubt that assessors could be so stupid, one person’s case has already been talked about in the House of Commons. There, UK prime minister Theresa May expressed concern and promised it would be investigated.

degree

Liz McKinnes MP

The case was brought up during prime minister’s questions last week by Liz McInnes, Labour MP for Heywood and Middleton. She spoke of her constituent, Natasha, who has fanconi anemia – a genetic bone marrow condition which carries a very high risk of cancer.

Degree: doesn’t need as much support

Ms McInnes said: “Natasha was on lifetime disability allowance (DLA), which was removed following a PIP assessment.

“When Natasha appealed, she was told that because she had a degree, she doesn’t need as much support.

“Now, I’m sure the PM is aware that disease and cancer are no respecters of qualifications and I’d like to ask the PM what urgent measures she will take to improve the quality and standard of PIP assessments.”

Theresa May, prime minister.

Mrs May admitted the case was concerning and surprising.

She said: “Obviously, the DWP is constantly looking at the standard of PIP assessments that are being made I’m sorry to hear the case that the Honorable Lady has set out.

“I’m sure most people would be concerned at hear that case. I’m very surprised at the judgement that was given in relation to that individual. Can I suggest that she sends in the detail of that case and we’ll make sure that that’s looked into.”

Well, I am sure Natasha’s case will be subject to an investigation, of sorts, but I don’t think it will lead to any major changes that could benefit the rest of us. No, that would be too much to hope from this government.

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

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50shadesofsun.com is the personal website of Ian Franks, 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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Disabilities: Official papers reveal failings of assessment contractors

Devastating papers, reluctantly released by the government under the Freedom of Information Act (FOI), reveal frightful failures of a key disability benefit. In particular, the papers show the shortcomings of outsourcing contractors hired to carry out assessments of applications.

That means that critics of personal independence payment (PIP), and the way it has been introduced, have been fully vindicated. And, in those critics I include myself-

The papers, popularly dubbed the ‘PIP files’, lift the lid on what has been going on. This includes:

  • up to 180 PIP assessors employed by Capita and Atos were the subject of at least four complaints each in three-month periods in 2016;
  • 161 assessors working for Atos had more than three complaints made against them in a three-month period;

Neither Atos nor Capita, or the DWP, will say what action (if any) was taken against these assessors. Similarly, they refuse to say whether those involved are still carrying out face-to-face assessments of disabled PIP claimants.

  • that Atos and Capita contacted health and social care professionals to ask for information far less often than the government estimated would be needed.

In fact, both outsourcing companies have failed to request vital evidence from GPs and social workers. Such evidence could help disabled people secure the benefits they are entitled to receive.

Further evidence

According documents prepared in May 2012, the DWP had expected contractors would need to ask for further evidence in about 50% of cases. But the latest papers show:

  • In June and July 2016, Capita was seeking further information from GPs, consultants or social workers in fewer than one in every 50 PIP claims. That’s less than 2% of cases;
  • In June 2016, Capita sought further evidence for just 380 of the 21,554 PIP assessments it dealt with. Incredibly, just a little more than 1.75%.

The figures are contained in official reports, prepared by contractors Capita and Atos, for the UK government’s Department for Work and Pensions (DWP).

The PIP files were released under FOI to Drew Hendry of the Scottish Nationalist Party (SNP). He has been MP for Inverness, Nairn, Badenoch and Strathspey since the 2015 general election.

disability employmentAdditionally, a report by Disability News Service says:

Nearly one in three of the disability benefit assessment reports completed by a private sector contractor were significantly flawed, confidential Department for Work and Pensions documents suggest.

Unacceptable assessment reports

The figures were revealed through a government audit of personal independence payment (PIP) assessment reports that had been written by staff working for under-fire outsourcing giant Capita in 2016.

The audit, which examined more than 4,000 of the 190,000 assessment reports completed by Capita from April to December 2016, found that about 7.5% of them were so poor as to be deemed “unacceptable”.

But with another 14% of assessments, DWP concluded that the report was so flawed that there was “learning required” by the healthcare professional who wrote it, although the report was of an “acceptable” standard.

And in a further 12% of cases, the report needed to be amended because of even more serious flaws in the assessor’s report, although again the report was still said to be of an “acceptable” standard.

In all, nearly 33% of the Capita reports audited during 2016 were found to be of an unacceptable standard, to need changes, or demonstrated that the assessor had failed to carry out their role properly.

Shocking, right? Of course, but it is nothing that disability campaigners haven’t been saying about PIP assessments for a long time,

Sources:

Disability News Service: The PIP Files: DWP documents show ‘absolutely shocking’ failure on further evidence

Disability News Service: The PIP Files: Data shows multiple complaints made against scores of Atos assessors

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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.

* * * * *

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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Motability faces financial allegations but stands strong against its critics

Shock, horror. Motabilty Operations, part of the Motability charity, is facing allegations about its finances.

The UK organisation provides cars for disabled people who receive the highest level of benefit for mobility. It is accused of having enormous cash reserves and is said to pay its chief executive an outrageous six figure salary.

Extraordinary, we must investigate, say ministers and other MPs. BUT, hold on, what are the FACTS? What is the TRUTH?

The Daily Mail first revealed the allegations in a report published this week. In the Mail Online, the story was headlined “Revealed: Boss of car scheme for the disabled is on £1.7million… and YOU pay: MPs question Motability’s lavish salaries and its £2.4billion cash stockpile”.

Today, it returned to the story, quoting the Press Association saying:

A disability charity faces a double investigation after MPs raised concerns over the “grotesque” state of its finances.

Work and pensions secretary Esther McVey said she has asked the National Audit Office (NAO) to consider probing Motability amid reports it has a £2.4 billion surplus and pays its chief executive £1.7 million a year.

Labour’s Frank Field, chairman of the Work and Pensions select committee, also confirmed his panel would be launching its own “urgent inquiry”.

Allegations rebuffed

I am sure you will agree, if the allegations turn out to be true, it would be disgusting. Profiteering on the backs of the disabled. However, there are two sides to every story and Motability has hit back.

It has issued a strongly worded rebuff to the claims made against it. In its statement, Motability said:

motabilityThe Daily Mail claims there is a £2.4bn ‘cash stockpile’ or ‘spare £2.4bn’.

It’s quite clear to us that the Daily Mail has totally misunderstood what this £2.4 billion of reserves represents. It is not held as cash but is used to buy cars for disabled people. This reduces the amount of borrowing required.

It also underpins the scheme’s financial stability, protecting it from the business risks it faces, particularly in relation to used car values. The Charity Commission has today stated “that we consider the level of operating capital held by the company in order to guarantee the scheme to be conservative”.

Moving on to the issue of the salary paid to Mike Betts, the charity said:

The remuneration of Motability Operations directors is decided by the Motability operations board, based on the advice of their remuneration committee.

Successful and effective

Remuneration is reviewed against the market to ensure that it is both competitive over the long term, and to ensure that any rewards are related to performance especially in relation to the quality of service provided to customers.

The current chief executive of Motability Operations, Mike Betts, has been in place since 2003 and has been instrumental in ensuring the company is able to operate successfully and effectively.

So, we have allegations and a complete rebuff. Now, we will have to wait for the inquiries to be completed and all the facts to be established.

Until then, I’ll give Motability the benefit of any doubt. After all, like anyone else, the company should be considered innocent until proven guilty.

•  Having multiple sclerosis£££, I was awarded the top level of both care and mobility elements of Disabled Living Allowance. I chose to use the mobility element to get a Motability car when I lived in Wales. While I still have the same award, the mobility element is not paid outside the UK and so, living in Spain, I don’t receive it. However, if I moved back to Britain, I would be paid it again.

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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.

* * * * *

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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Medicinal cannabis legalisation could help treat many diseases

Disease and patient-orientated organisation the MS Society is leading support for a move to legalise medicinal cannabis in the UK.

The House of Commons is soon to consider the Legalisation of Cannabis (Medicinal Purposes) Bill 2017-19. It is a Private Member’s Bill sponsored by Paul Flynn, Labour MP for Newport West.

cannabis

Paul Flynn MP.

The Bill is due to have its second reading debate in two weeks, on Friday 23 February 23. It received its first reading on October 10 last year

In summary. the Bill would allow the production, supply, possession and use of cannabis and cannabis resin for medicinal purposes; and for connected purposes.

I believe such a move should be welcomed.This is because it would stand to benefit many more people than those with MS. It could potentially help relieve the symptoms of chronic pain, spasticity, and a host of other medical conditions and diseases.

Writing in the UK’s Pharmaceutical Journal, Flynn said: “During my 30 years in parliament I have campaigned against the harm caused by the antidepressant paroxetine and the nonsteroidal anti-inflammatory drug rofecoxib; and I now chair a campaign opposed to the growing menace of opioid misuse. But cannabis is a drug that evidence suggests could provide unique relief for many who suffer from the cruel disease MS. The law should not criminalise patients seeking relief from pain and spasm.”

Cannabis can help where other treatments fail

The MS Society is one of the organisations keen to support the Bill. The society’s campaign team says: “For some people with MS, there’s no effective legal treatment for pain and muscle spasms. But many find that cannabis for medicinal use can help when other treatments haven’t. 

cannabis“Right now, cannabis for medicinal use is illegal. We want the UK Government to make it available to people who could benefit.  

“When we asked last year, 72% of people with MS agreed that cannabis should be legalised for medicinal purposes.

“A Bill tabled by Newport West MP Paul Flynn on the legalisation of cannabis for medicinal use is scheduled to be discussed in the House of Commons this month on this issue. We need the UK Government to take action.”

The society is also urging its members and supporters to get behind the Bill and take action. It says:

“Please Tweet your MP and ask them to write to the Minister. You’ll be helping to show the UK Government how much support there is for this issue. If you don’t have Twitter, please email your MP instead.

“With your help, we can get closer towards a change in the law.”

Medical Marijuana Inc says medicinal cannabis has “potential as a viable treatment option for helping to manage chronic pain, nausea and spasms, and for providing healing effects for those with serious conditions like multiple sclerosis, arthritis, inflammatory bowel disease, HIV/AIDS, diabetes, cancer and spinal cord injuries.”

Its website lists 45 conditions for which, it says, “medical marijuana is now a treatment.”

The sooner that the UK government legalises medicinal cannabis the better.

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

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

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

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MS bodies look for NICE support for PPMS treatment

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

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

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

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

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

Tell what it’s like to live with PPMS

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

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

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

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

“We’d like to hear from you if:

        you have primary progressive MS

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

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

      you are a health professional providing care for people with PPMS

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

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

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

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

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Universal credit benefit reform does not make anticipated savings

Universal credit (UC) is not going to give the UK government its much-desired savings in benefit costs, according to an official report.

An Office for Budget Responsibility (OBR) report says that UC will save the government less than 2% of what it would have spent on benefits if UC had not been introduced.

OBR expects universal credit to save the Department for Work and Pensions (DWP) just £1 billion by the time it is fully rolled-out. This compares poorly with the £63.2 billion that the benefits replaced by UC would have cost.

universal creditSo, what are the figures involved? Well, the saving in benefits paid out is estimated to be £10.7 billion, but that is not the entire story. The report says additional costs of UC will be a full £9.6 billion.

To me, that means that millions have been been stolen out of the hands of claimants. Instead, they are being used, partially at least, to line the corporate pockets of outside contractors. Disgusting, but I have ceased to be surprised by the actions of this government.

In particular, OBR says low income self-employed claimants will be the hardest hit by UC.

The report goes on to say, rather worryingly; “work coaches in UC have considerably more discretion in the conditions they can impose on both in-work and out-of-work claimants and in the sanctions that they can impose for failure to meet those conditions.”

Universal credit history repeated

As if existing sanctions are not hated enough, it seems UC claimants seem fated to face worse conditions and sanctions.

I was one of the recipients of incapacity benefit(IB) who successfully completed the move to employment and support allowance support group. Many IB claimants were not so fortunate but the government’s aim of slashing benefit costs failed dismally. All it did was to hurt the lives of many thousands of claimants.

Now we see history being repeated with ministers trying to use UC to replace six means-tested benefits. These are income-based jobseeker’s allowance, housing benefit, working tax credit, child tax credit, income-based employment and support allowance, and income support.

At the same time, the gradual introduction of personal independence payment (PIP) to replace disability living allowance (DLA) continues to terrorise those still receiving DLA-

Campaigning and information website benefitsandwork.co.uk says: “It seems clear that an enormous amount of hardship and fear is being caused by yet another failed ‘reform’ to the benefits system in the transfer to UC.

“Will successive governments ever learn from their mistakes?”

Regretfully, it appears not.

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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.

* * * * *

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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