Patient organisation involvement in our advice

Patient organisation involvement in our advice

We asked Keith Park, Policy, Public Affairs and Campaigns Manager at MS Society about his experience of contributing to SHTG advice.

'During discussions round the table [at SHTG Council] people could ask us questions directly which gave us as just as much of an opportunity to answer questions as the neurologists..' 

Scotland has one of the highest rates of Multiple Sclerosis (MS) in the world with an estimated 15,700 people who have the condition. The MS Society estimates that 720 people are diagnosed with MS every year in Scotland, which is about 13 per 100,000 people. MS affects women disproportionately - for every man diagnosed there are 2.3 women diagnosed. Increased incidence of MS is also associated with higher geographical latitude .  MS is generally diagnosed in young adults. It affects the brain and spinal cord causing a wide range of symptoms including fatigue, pain, mobility difficulty, balance and co-ordination, and vision problems. 

The Scottish Health Technologies Group (SHTG) was asked to examine the evidence surrounding autologous haematopoietic stem cell transplant (AHSCT) and advise on whether or not it would be a valuable treatment choice for a specific group of patients who have relapsing remitting MS (RRMS) and who are not responding to disease modifying therapies (DMTs).

AHSCT involves taking cells from the person’s bone marrow and freezing them. The person then has chemotherapy to remove the faulty immune cells which causes the damage in MS. The cells are then defrosted and returned to the blood stream to rebuild the immune system. The procedure takes about a month in hospital and follow-up visits are required to check on progress.

SHTG’s advice was developed amid political and national interest in the topic because the treatment was available on the NHS in England but not in Scotland.

Keith Park, Policy, Public Affairs and Campaigns Manager at MS Society, was involved in putting together a patient organisation submission to inform the SHTG advice.

Keith explains why the MS Society chose to contribute:

“The MS Society advocates for the widest choice of treatment options to be available to people with MS assuming there’s evidence that a treatment works and is safe, while it may not be without risks completely.

“Currently available DMTs don’t work for everyone and we wanted to help find out whether AHSCT could be an effective alternative DMT for some people as a third line option.

“There was obvious inequality in the health care system because AHSCT was available to eligible MS patients in England but not in Scotland and we wanted to address that.”

SHTG found evidence that while AHSCT can reduce symptoms, slow down disability progression and improve quality of life, like some of the most effective medicines for MS, it is an intensive treatment with potentially serious side effects. The SHTG recommendation to NHSScotland can be read here.

AHSCT remains unavailable at centres in Scotland because it is a complex procedure and many processes need to be put in place before it can be rolled out safely and effectively. Unfortunately, as this work was progressing the pandemic hit and the work was put on hold.

However, earlier this year the Scottish Government said that HSCT can be offered to eligible patients from Scotland who meet the eligibility criteria when it is clinically judged the benefits of treatment outweigh the risks. In those circumstances the NHS in Scotland will fund the treatment to be undertaken at one of the specialist centres in England.

Despite the treatment currently not being available in centres in Scotland, Keith says the MS Society (and Scottish HSCT Network who also contributed a patient organisation submission) were very pleased with SHTG’s advice and he found them to be very inclusive and welcoming.

Keith concludes:

“We got a lot of support from SHTG to put together our submission and make sure our community’s voice was heard, I felt we were a big part of the process.

During discussions round the table [at SHTG Council] people could ask us questions directly which gave us just as much of an opportunity to answer questions as the neurologists.

I found the whole process with SHTG helpful and quite enjoyable as they took a modern and sensible approach.”

 

[Photo by Adrian Swancar on Unsplash]

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Last Updated: 14 July 2022