MS Sufferers In Britain Let Down By Poor Care

MS Sufferers In Britain Let Down By Poor Care

By Gerard Tubb, North of England correspondent | Sky News

Britain is one of the worst countries in Europe for treating people with Multiple Sclerosis, according to the leading charity in the field.

Simon Gillespie, the chief executive of the MS Society , said: “Access to treatments and services for many is a daily battle, and in the current economic climate things don’t look set to improve.”

MS is the most common disabling neurological condition affecting young adults and there is no cure.

At the launch of MS Week, the charity that supports and campaigns for the 85,000 MS sufferers in the UK is launching a new register to try to improve services.

The charity says the UK ranks the worst in Western Europe in terms of access to MS drugs, and is only above Romania, Poland, Lithuania and Estonia in Eastern Europe.

MS sufferer Debbie Purdy, who successfully won a campaign for public guidelines on the law relating to assisting a suicide, is fighting for access to the drug Sativex.

She says it would cost the NHS £11 per day and might stop painful spasms that often force her to sleep in her wheelchair, with her head propped against a bedroom cupboard.


“The whole battle with the House of Lords, the whole battle to clarify the law on assisted dying was because I want to live,” she told Sky News.

“But I want to live a life which is acceptable to me – I don’t want to be spasming constantly, it’s painful and it means I don’t always sleep in the bed because if I stay in my chair I can’t spasm.”

Sativex is not available on the NHS in the Bradford area and Debbie says she has just been told she will have to wait until December for a chance to plead her case with a neurologist.

The new MS Register could, says the MS Society, transform the delivery of care and services for people with MS.

Patients will be encouraged to provide personal details which will be added to clinical data and routine NHS information.

The push for a register has been welcomed by Ann Wordingham, the chair of the Hull branch of the MS Society and a volunteer with the charity since 1966.

“Services are very patchy across the country and they could be markedly improved if more money was put into them,” she said.

“We are not one of the charities that has a high profile in terms of what the NHS thinks is of importance, like cancer, so we have to work very hard to get people to realise what is needed and this register will help to do that.”

Simon Gillespie is also convinced the register will make a significant difference.

“We are confident that MS is beatable within our generation,” he said. “It’s time to put MS on the map.”