Beki Aldam is Public Engagement Coordinator in the Barts-MS team based at the Blizard Institute, Queen Mary University of London. In this blog, she talks about her team’s trip to a remote island in the Outer Hebrides to organise an event for multiple sclerosis patients who have limited access to neurologists.
15 August 2018
When we headed up to the beautiful Isle of Lewis in the Outer Hebrides archipelago in Scotland, it seemed unspeakably cruel that in such a rural place, the rate of multiple sclerosis (MS) is three times higher than in London. It seems so unfair that people without easy access to a neurologist, who have to fly to Glasgow for a yearly appointment, should be more likely to develop a condition that lasts a lifetime, than their peers in London, who are replete with facilities and specialist health teams.
MS is a chronic neurological condition that affects around 100,000 (diagnosed) people in the UK. It’s an autoimmune disease that affects each person differently - symptoms are incredibly varied and no two cases of MS are the same.
Stornoway on the Isle of Lewis is one of the highest MS incidence and prevalence areas in the world. Based on recent estimates the incidence of MS in this region of Scotland is about 2.5 times higher than the incidence of MS in the South East of England.
There are 87 people with MS in the Isles, out of ~26,000 people living there. The prevalence (all known existing cases) of MS in the Western Isles is, therefore, close to 340/100,000; this is very, very high. A recent MS incidence study in the Scottish Highlands puts the incidence of new cases per year at ~15/100,000. That makes the rate of MS in the Western Isles amongst the highest in the world.
The Western Isles does not have a resident neurologist, so everyone with a neurological condition on the islands has to travel to Glasgow to see a neurologist. This can make it difficult for patients as trips from the island are often cancelled due to bad weather.
But the islands do have a fantastic MS nurse in the form of Rachel Morrison. Rachel travels round the islands to see her patients, covering an area of several hundred miles. It was Rachel that first asked Gavin if we would come up to the Western Isles to speak to her patients. We got together with the neurology team in Glasgow - who cover the Western Isles, and together we organised two information days.
We decided to run one day of talks for the healthcare professionals, a second for people affected by MS and a Digesting Science event for the children who attended.
Attending the first day were district nurses, GPs, physios, health visitors and others who care for people with MS in a professional capacity. We wanted to give these professionals more of an insight into specialist care for people with MS, and talks included information on holistic care, self-management and technology in care.
The second day was for families. People with MS attended with their loved ones and heard about the latest research into nutrition and exercise, Vitamin D, available treatments and the future of MS care.
The talks were all filmed are available on YouTube. The research days were also featured on BBC Alba, the Gaelic channel, as part of their evening news programme.
For media information, contact:Joel Winston