Multiple Scleroisis charity worker - “Access to treatment, services and care still isn’t good enough”

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People living with Multiple Sclerosis (MS) in the North-West have backed calls for patients to be given access to the most effective treatments and services for their condition.

It comes after a UK-wide report by the MS Society revealed that some people were not getting the right medications or services depending on where they live.

Mark Gamble, from Strabane, (who tells his story below) has been told that access to the symptom-relieving drug Famprya in Northern Ireland is near on impossible. He said, “It’s simply unfair.”

His sentiments are those that MS Society Foyle Branch Development Officer Terry McNamee hears on a regular basis.

He said, “The results of this survey do not surprise me at all. Yes, it states that people in Northern Ireland have good access to neurologists and other MS professionals, but even in this area there is room for improvement.

“And when it comes to accessing treatments, medications and care, I am hearing on a daily basis from people locally who are struggling.

“Just this week I met with a man who’s brother has MS. They’ve requested more help with his care as he has been bedridden for some months now. That care has been approved but only if the family pay for it. One hour of care a day costs £11, which would make the average monthly bill in excess of £300. They simply cannot afford the cost and so the care will have to be taken on by his family.

“This is reflected in the report which states 96% of patients in Northern Ireland rely on family and friends for occasional, frequent or constant assistance.”

Another point highlighted in the report that is reflected locally is access to symptom-relieving medicines. Terry says he knows of no-one in the Derry and surrounding areas that has been given access to Sativex or Famprya - the two licensed symptom management treatments that can help reduce the severity of painful muscle spasms or help improve walking ability.

While people here have a greater uptake of disease-modifying-drugs (68%), the latest one to be approved by NICE, Fingolimod, an oral tablet which can reduce MS relapses by up to 60 per cent, is currently not being taken by anyone in Northern Ireland.

Terry explains, “Fingolimod is a new oral treatment that would remove the need for patients to self-administer their treatment via injection yet it is not available to anyone that I know of. It would greatly improve the patient’s quality of care, and it has a more successful relapse reduction rate so it’s disappointing that no-one here has been offered the drug.

“We will continue to campaign and lobby our politicians to stop this postcode lottery so that people with MS can access the treatments and services they need no matter where they live.”

Meanwhile, SDLP Foyle MLA Mark H Durkan has called on the Department of Health to do more to promote awareness and information for MS patients. Mr Durkan said, “Whilst I acknowledge that Northern Ireland recorded the best uptake of Disease Modifying Treatment medication compared to other regions on these islands, the report shows that we must do more to provide vital information and support to those with the condition. We are leading the way in terms of monitoring patients with the condition, but we must not become complacent and instead must focus our energies in improving the availability of information, medication and support from people with MS.”

‘A lottery of treatment and care: MS services across Northern Ireland and the UK’ was released to mark MS Week, which runs all week, starting yesterday, Monday 29th April and ending on Sunday 5th May.

Visit www.mssociety.org.uk/MSlottery for further survey findings, films, blogs and case studies.