Thursday, 12 April 2018

What is so special about Stornoway?

A post to celebrate some of the MS Champions who help make the MS-World go around.

Stornoway, Lewis, Western Isles of Scotland


A few years ago Dr Niall MacDougall came down from Glasgow to spend 3 months at Barts-MS MS as a visiting fellow. This was just prior to him getting his first consultant job as an MSologist in Lanarkshire, Scotland. It was during this visit that he made me appreciate the scale of the MS crisis in Scotland and the burden it was placing on a clearly under-resourced Scottish Health Service. It also made me realise that in comparison MSers in London have it relatively good. Londoners have a choice; there are 6 regional neuroscience centres and MSers can vote with their feet. This is not the case in Scotland.

When Niall started his new job he was thrown into the deep end and immediately had a crisis with the loss of his MS nurse specialist. She was forced to leave because she could not cope with the workload. She has subsequently been replaced by two nurse specialists, but based on their caseload even two nurses is not enough. Niall, who is an incredibly caring neurologist, his MS nurses and their extended team of allied healthcare professionals are true MS Champions and are making a real difference to their Lanarkshire patients' lives.

Shortly after Niall's visit Alison and I were approached by Rachel Morrison, the MS Nurse Specialist who covers the Western Isles of Scotland, at the MS Trust meeting in Windsor in 2016. Rachel asked us if we would consider visiting the Islands and hosting an MS Research Day for her patients on the Island. After a false start in 2017, we have finally managed to get our acts together and will be spending three days on Lewis. The Western Isles does not have a resident neurologist and, therefore, all the patients have to travel to Glasgow to seek a neurological opinion. This can make it difficult for patients as trips from the island are often cancelled due to bad weather, but the fact that they have a rather exceptional caring MS nurse specialist in Rachel makes the real difference. For example, I have just written a letter of support for Rachel to the Western Isles Hospital to help set-up a new rehabilitation service for young people with disabilities. Rachel is clearly an MS Champion extraordinaire. 

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 2.5x the incidence of MS in the SouthEast of England. The Glasgow MS Team and the other Scottish MS teams are doing their bit to manage the avalanche of patients, but the Scottish MS epidemic is very concerning and needs to be addressed. This is one of the reasons why we have launched our preventive neurology initiative to start working on preventing MS.  Dr Ruth Dobson will be rejoining Barts-MS in May; her brief to set-up the infrastructure to do MS prevention trials. MS is almost certainly a preventable disease, or at least partly preventable and we can’t leave it to the next generation of researchers to sort out. We have to #ActNow to #PreventMS.

The good news is that at least five of the Glasgow MS team (Niall MacDougall, Pushkar Shah, Sarah-Jane Martin, Stewart Webb and Mhairi Coutts) will be partnering with Barts-MS over the next few days to run three separate educational activities on the Island. One for the healthcare professionals, a second for MSers and a third for the children of MSers. We plan to record the talks and will put them online for the wider community to watch. 

You may know that Alison Thomson, our designer in residence, is Scottish and she has always wanted to give something back to her home country. The Stornoway MS Research weekend is one of the many activities Alison is involved in to help Scottish MSers. She has done an enormous amount of work organising this weekend, which makes Alison our super MS Champion. 

I would like to thank the other members of the Barts-MS team (David/MouseDoctor, Gareth/MouseDoctor2, Sharmilee/NeuroDocGnanapavan, Klaus/DrK and Beki) for taking time-out over a weekend and for making the effort to help MSers on a relatively remote, but important, group of Islands on the Western tip of Scotland. You are all MS Champions. 

As for me, I am in the doghouse. Today is my 54th Birthday and instead of spending it with my family and our dog relaxing I will be travelling to Stornoway. I am sure we will have a tipple (Harris Gin), or two, tonight to celebrate my birthday and contemplate what the next few days hold for us. 



ProfG    

8 comments:

  1. Happy Birthday we really do appreciate what you do for people with MS and the MS community.

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  2. Is there a higher prevalence of the HLA-DR15 haplotype in that part of Scotland (compared to London, for example)?

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  3. Happy Birthday!

    What would it take to get a mobile MRI machine to Stornoway and scan the population? Mine was caught very early because of an MRI scan. Catching it early is equivalent to prevention.

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  4. Very Happy Birthday, from someone four months your senior! 🙂

    In those familiar querying types of conversation I always now answer 'Where would you most like to live?' with 'here in the southeast, where I am now' The reason being I quickly came to understand that it was fortunate for me to live in this part of the country in regards to my diagnosis 2 years ago, and my subsequent treatment.

    Reading this post, my heart really goes out to PwMS and those desperately needing diagnosis, in Scotland. Thanks so much to all of you for making all this effort to spend a few days on Lewis, aiming to make some meaningful impression on things there!

    Your significant efforts, such as this, reminds me that I very nearly put the Barts team forward for the One Show NHS awards, but thought you might hate me for it! 😏

    Have a very productive few days and hopefully enjoy celebrating your birthday twice.

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  5. Missed out on the ms awards 2018 too....DrK forgot to nominate me :-(.

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