“Improved specialist care needed for progressive Multiple sclerosis” – MS Trust

SPECIALIST care for people with Multiple sclerosis has come under the spotlight this week with MS Trust claiming that those suffering from the progressive condition feel they are receiving a ‘second class’ service.

“Since I was diagnosed I’ve never been called back to see a consultant, my progressive symptoms have never been monitored even though things are getting a bit more difficult for me.”

Sonia Leeming

People with progressive MS make up almost half of the UK’s 100,000 MS population but 40 per cent haven’t seen an MS specialist nurse in the past year and 45 per cent haven’t seen a neurologist.

The MS Trust surveyed over 1,800 people living with the neurological condition for its new research which also revealed that 12 per cent of people with progressive MS haven’t seen any kind of specialist health professional in the last year, falling short of NICE’s MS Quality Standard.

The MS Trust announced during MS Awareness Week (April 25 to May 1) that a worrying trend reported in its survey was the reported experience of people with secondary progressive MS being effectively ‘discharged’ from the care of their neurologist and even their specialist nurse when their disease became progressive.

“Because I have to walk really slowly I have to sit down a lot. People see me staggering all over the place but I don’t feel that I tell people that the real reason is that I have MS and that can make me feel a bit lonely.”

Sonia Leeming

Sonia Leeming, 51, from Hawnby in North Yorkshire said she was just given a leaflet after being  diagnosed with MS nine years ago. The business owner and mother of two teenagers said the symptoms started with feeling a ‘pins and needles’ sensation in her fingers but have got progressively worse over time and cause discomfort.

“Since I was diagnosed I’ve never been called back to see a consultant, my progressive symptoms have never been monitored even though things are getting a bit more difficult for me,” she explained.

“My balance can be poor to the extent that people think I’ve had a drink – which I haven’t as alcohol is something that makes my balance even worse.

“Because I have to walk really slowly I have to sit down a lot. People see me staggering all over the place but I don’t feel that I can tell people that the real reason is that I have MS, and that can make me feel a bit lonely.

“I’m not one for joining support groups as I’m quite a private person, I know that if I went to my GP I would be referred but I just get on with it,” added Sonia who runs Hawnby Stores and Tea Room.

Multiple Sclerosis is a neurological condition that affects the nerves in the brain and spinal cord. It is a lifelong condition, and there are over 100,000 people living with the disease in the UK. Almost half of these have a progressive form of the disease, where symptoms get progressively worse over time. As yet there are no licensed disease modifying drugs (DMDs) that are effective for people with progressive MS.

Adrienn Petreczky, neurology consultant with specialist interest in MS at South Tees Hospitals NHS Trust advised patients who felt their health was getting worse to seek advice from their neurology consultant.

She said: “The neurology department covers a large geographical area with outreach clinics in Bishop Auckland, Newton Aycliffe, Darlington, Hartlepool, Northallerton and Whitby.

“Our MS team consists of two neurology consultants with a specialist interest in MS and two MS nurse specialists.

“Patients are referred by their GP and once a diagnosis is established we discuss this with the patient, provide leaflets, and where appropriate, offer an appointment with our MS nurse specialists who also provide a telephone advisory service at designated times each week.

“The treatment of patients with MS is complex and can involve input from a number of teams depending on each individual’s circumstances.

“Patients who have relapsing remitting MS very often meet the criteria for disease modifying medications which require regular follow-up appointments.

She added: “Patients with secondary or primary progressive MS may be offered treatment for symptoms such as neuropathic pain, spasticity, bowel and bladder problems and will then require review appointments at James Cook or in our outreach clinics.

“My advice to patients with MS who think they are deteriorating is to seek advice from their neurology consultant.”

The report published this week by MS Trust said that MS specialist nurses were frequently singled out for special praise for the high quality of the care they gave.

Yet MS Trust research has shown that there are not enough MS specialist nurses in the UK, and that many of the nurses in post are managing unsustainable caseloads.

The charity is working with NHS managers, MS teams and people with MS across the UK to understand the new challenges facing specialist services and to develop new ways of working to ensure everyone living with MS can access healthcare, no matter what form of the disease they have.

Amy Bowen, Director of Service Development at the MS Trust, added: “These findings demonstrate the urgent need for new thinking on ensuring equity in MS services. We need to assess the challenges facing MS teams, and develop new ways of delivering services that work for everyone living with MS, no matter what type of the disease they have.”

CONTACT:
To find out more about the work of the MS Trust visit www.mstrust.org.uk

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