This section is a selective summary of recent MS media coverage. As the BBC looks at employment issues, a journalist with MS offers a wry personal perspective. Encouraging results from a phase II drug trial but risk-sharing scheme is a slow starter. Allison gets back in the swim of things. Three years on, Mary gets her money back. Remembering Vivien Neves. Partnership in Northern Ireland. Scotland goes on on-line. And a new booklet is in the news.
Breaking the rules
During a week-long feature on disability and employment, the BBC Radio Four programme You & Yours asked why more disabled people don’t have jobs. In the final programme, presenter Peter White introduced Nick Walker, a freelance journalist and broadcaster who was diagnosed with MS at the age of 24.
In August 2000 Nick moved to a wheelchair accessible home. The move was accompanied by a significant downturn in his condition. “I could no longer dress myself, I was doubly incontinent, tetraplegic and the strength in my right hand was ebbing.” His MS had reached at point where he could no longer support himself financially.
“In the same week I moved, turned 30 and, for want of a better word, retired. Retirement is the wrong word, not only because I don’t claim any pension, I claim instead incapacity benefit, but more precisely it’s the wrong word because I have a job.
“I commit two hours a day to physiotherapy and exercise. At least one hour a day is consumed by the bureaucracy of disability.” He described a “surreal” meeting with a social worker where the cost of extra washing powder to clean soiled sheets and Jaffa Cakes for his carer were calculated to assess his contribution to the cost of his care.
“Still, after months of adapting to the ever-changing demands of this condition, I’ve created a few spare hours a week, between eight and 16 I would guess, and I try to write. And here’s the rub. My talking to you now contravenes almost every rule. It’s taken me most of the week to write this and I hope you find it informative because when my cheque arrives the path of least resistance will be to tear it up. This is hardly something of which the Inland Revenue would approve – after all some of it will belong to them. I’m not expecting a huge fee – nobody works in radio for the money – but if You & Yours pays me more than £70 it will be enough to jeopardise my income support and more seriously my housing benefit and council tax benefit.
“The aim of New Deal is to get those on long-term incapacity benefit back to full-time work. Personally I don’t have the capacity, never mind the time. I’ve written these 500 words this week, I have physiotherapy to do, I have washing powder to weigh and Jaffa Cakes to buy. There is only one question, as a journalist, I can ask – why do I have to break the law, just to ask this very question?”
Antegren trial promising
Damage done to the brain in MS was slowed by a new drug in a study of
213 patients in the UK, US and Canada, reported New Scientist.
The drug, Antegren (natalizumab), blocks the transport of immune cells across the blood-brain barrier. Professor David Miller at the Institute of Neurology, and colleagues found that patients injected with the drug once a month had only a tenth as many new brain lesions as those given a placebo. The trial results were published in the New England Journal of Medicine.
Society chief executive, Mike O’Donovan told the Daily Mail, “The results look very promising. We hope further studies will confirm Antegren’s potential to help control the symptoms of the devastating disease.”
Antegren has completed phase two of necessary trials – some way to go before, if phase three trials are successful, it is used clinically.
The Antegren story prompted Dr Thomas Stuttaford of The Times to look at the existing MS modifying drugs and the risk-sharing scheme. He wrote, ”This scheme was due to start May and to be running countrywide within 18 months. Unfortunately, the confusion caused by the latest reorganisation of the NHS has caused a delay in setting up the infrastructure needed for the assessment of patients before they enter the scheme. It is now claimed that this assessment would probably take much longer than the 18 months forecast.
“The Multiple Sclerosis Society has been concerned about the lack of progress in some parts of the country. It is monitoring the situation and reporting its findings to the Department of Health, when it finds that there is evidence of tardiness. The term ‘concern’ may be a necessary political euphemism, for many of the patients with MS in the slow districts are furious and feel let down.”
Allison Carter’s legs were so bruised she was too embarrassed to take her young son swimming. Her MS symptoms made it difficult to use the syringe for her beta interferon injections. The jabs left her covered in huge bruises.
Allison was pregnant when she discovered she had MS. In March 2000 she developed pins and needles in her hands, but dismissed them believing she had just slept awkwardly. But in the following weeks her symptoms became worse.
After a visit to her GP, she was eventually sent to the Southampton General for tests. “Somehow the notes got misplaced and I never received the results,” she told the Daily Mirror. In July, she and her partner found out they were expecting their first child. They were thrilled.
“During a routine antenatal check-up, the subject of the test results came up. It was a terrible shock to be told I had MS. But by then most of the symptoms had disappeared and my health improved. I still had some tingling and numbness, but I was getting used to it. I was so happy at being pregnant that I forgot about it.” Max was born in April 2001 with no complications. Ten months later, Allison suffered a relapse and in May last year she was prescribed Betaferon.
“I was beginning to panic when I had to inject myself because I found it so difficult. I had awful problems because my hands are so affected by the MS. Often the needle would not go in properly and I was bruising myself a lot. My legs were so badly bruised I was embarrassed to take my son swimming. It looked like I was abusing myself.”
Now, thanks to the development of the Betaject Light auto-injector, Allison can return to the pool. “With the autoject I have no problems. All you have to do is push the trigger and the needle automatically goes in. I have no bruising and less injection site reactions. It is much less daunting.”
Three years after first highlighting Mary Pearce’s battle with a stair-lift firm, Wales on Sunday reported on the end of a long drawn out story.
Mary, who has MS, found it extremely difficult to get in and out of her home, which is built on a hill. Her front door was accessed via a steep flight of stairs. To make life easier, Mary contacted Day’s Mobility Limited of Swansea, to fit an outside lift. The £18,000 lift soon became increasingly temperamental and on at least five occasions it broke down with her ‘on-board’.
Terrified of getting trapped again, Mary refused to use the lift and called the firm to put it right. But problems persisted and discussions with the company broke down. A stalemate developed and Mary effectively became trapped inside her own house – unable to use the lift and unable to replace it.
Three years on, she has taken Day’s to court and won. Unable to get to court herself – the judge, barristers and solicitors held court in Mary’s front room. Day’s were ordered to repay the £18,000 that had been paid for the lift and a further £5,000 damages for the stress she had suffered.
Tributes to Vivien
Vivien Neves, the first nude model to appear in The Times has died after a long battle against MS. She was 54, the paper reported.
Vivien, who was at the height of her modelling career in the early 1970’s was known as The Body, caught pneumonia before Christmas and died in hospital. Her celebrated appearance in a full-page advert in The Times in March 1971 caused a furore in the letters page and on television and radio.
One reader’s letter captured the spirit of many. James Marchant wrote, “Sir, ...I hope this delightful picture has the same effect on The Times’s circulation as it does on mine.”
Daily Mail columnist Lynda Lee-Potter wrote of Vivien, “I didn’t meet her until she was in her early 30’s, long after she developed MS. Her movements and speech were already restricted but not her courage. She had neither self-pity nor bitterness. She was beautiful inside as well as out and neither age nor suffering extinguished that.”
The Londonderry Sentinel had news of the MS Society Northern Ireland teaming up with the Western Health and Society Services Board to bring a new £200,000 service to people with MS.
Discussion of ways to improve standards and accessibility of healthcare had identified the urgent need to appoint an MS specialist nurse for the area. The partnership will initially run for five years, funded by the Society’s branches and the Board. Professor Martin Bradley of the WHSSB said, “The project will bring a much needed service to our area and is a clear example of how both the statutory and voluntary sectors can work together in an effective and harmonious way. We are very much looking forward to working with the MS Society.”
The Society in Scotland has officially launched its own website for more than 10,000 people with MS in Scotland and those who care for them.
MS Society Scotland patron, author J K Rowling told the Fife Leader and other papers, “I am delighted there is now a really useful new website to help people with MS access the Society’s information and services wherever in Scotland they live.”
Similar to the UK MS Society site, the Scottish version has large on-screen buttons to lead people quickly to the information they want.
Spreading the word
From the Abergavenny Chronicle to the Hull Daily Mail and John O’Groats Journal to the Jersey Evening Post, the Society’s new pocket-size 36-page booklet ‘Just diagnosed; an introduction to MS’ has been attracting nation-wide media attention.
Said Mike O’Donovan, “Every week around 50 people in the UK are told
they have MS and at the time it may be quite hard to take in information
and advice. This booklet helps by setting out simply what people
with MS and their families really want to know.”
© Copyright 2003, The Multiple Sclerosis Society of Great Britain and Northern Ireland