Monday, 16 April 2018

Reflections on all things MS from Stornoway

We have just finished our 2018 Barts-MS Research Day on Stornoway with the Glasgow-MS team. The experience has been very humbling and quite and an eye-opener in terms of living with a chronic disease, such as MS, on a remote Island.

Barts-MS and Glasgow-MS hugging the Callanish Stones, Western Isles.



There are only 87 people with MS in the Isles with a denominator of ~26,000 people living on the Islands. 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 (new cases per year) at ~15/100,000. The only figures that I am aware of that are worse than this are the Orkney and Shetland Islands at ~18/100,000 and Saskatchewan at ~17/100,000. In short, the Western Isles is in the top of the MS league table in terms of the MS epidemic. Please note my use of epidemic; as the incidence continues to increase we can't call it endemic yet (stable incidence).

Sitting here in Stornoway airport, as I am writing this post, I have just seen someone coming off the plane in a wheelchair. The reality of the MS epidemic on the Islands is that if I was a betting person the odds are that this person has MS. Sad but true.


At the end of my closing talk on Saturday Dr Niall Macdougall asked me a challenging question: "If I was to become the resident, or the advisory, neurologist to the Western Isles what would I do to improve MS outcomes on the Isles?".


The following are some my initial thoughts:

  1. I would first spend time meeting people with MS, their families and the healthcare professionals on the Islands to understand their worldview and to get a feel for what is required to address their needs. I got a sense this weekend that a lot of the people with MS are quite accepting of their lot; it is as if this is the price you pay for living on the Islands. I am not sure if this impression is correct, but if it is I would spend time activating patients to demand more from the Scottish NHS. To do this they would need comparative data from other areas of Scotland to see if their access to treatments, etc. is inferior to the mainland. 
  2. I would start an MS register of family members of people with MS and try to contact people who have left the Western Isles and living on the mainland or elsewhere. I would want to educate these people about MS and the risk factors predisposing them to MS, in particular, smoking and low vitamin D levels and lifestyle factors such as obesity. The register could then be used as a platform for designing and piloting MS prevention studies. 
  3. I would help the MS Unit in Glasgow develop a business case to increase the amount of MSology cover for the Isles, including telemedicine clinics. This may include occasional visits to see patient to disabled to travel. 
  4. I would make sure Rachel Morrison, the local MS nurse specialist, has the necessary training to become a prescribing nurse specialist. This would help the neurologists in Glasgow and the GPs on the Island. 
  5. I would make the case for a mobile MRI scanner to visit the Isles for a few weeks at a time several times a year. This would save pwMS having to travel to Glasgow for their scans and would reduce the waiting times for MRI scans. The need for MRI scan is not limited to MS, but is clearly a problem for other specialities, for example, orthopaedics, surgery, etc. People with MS on the Isles need access to MRI to help with screening for MS, diagnosis of MS and for monitoring of their response to DMTs. 
  6. I would help Rachel expand her MS service to include group clinics to activate patients to self-monitor, self-manage and to expand the support network. It is quite clear that she is key to make any new services work. 
  7. I would create a risk register. As with all services that depend on a single practitioner they are at risk of a catastrophic breakdown in service provision in the event that person gets ill, leaves the Isles or is unable to work. A sustainability and succession plan is urgently needed. Rachel is a superwoman, but she is a mortal. I would, therefore, try include other HCPs in the new service structure, for example, by asking the neurology nurse specialists to cross-cover each other (maybe they do already). The latter may require investment in IT systems and common standard operating procedures to make sure that any urgent handovers are seamless. I would not be surprised if these are in place already. I am sure the Islanders have systems in place to cover any eventuality; they seem to be very resourceful. 
  8. As we were getting off the flight connecting flight in Glasgow, the Glasgow-MS team came up to me and said they had a solution to Western Isles' problems. They felt a GPwSI (General Practitioner with a Specialist Interest) in MS would be the solution. I agree, but you would have to find a GP who was prepared to do an MS fellowship and be prepared to take on the care of all the patients on the Island. The GPwSI could then be supported by the Glasgow-MS team by telemedicine. It would also be important to make sure this GPwSI could prescribe and monitor DMTs; may be the introduction of newer DMTs such as oral cladribine and ocrelizumab will make this easier. 

I sincerely hope that Alison Thomson, our Scottish designer in residence, feels she has given something back to her homeland. Without her efforts, the weekend would not have happened. I would like to thank the other members of the Barts-MS and the Glasgow teams for making the weekend such a success. Thank you to Rachel and the Stornoway team for your hospitality; you made us feel very welcome.

Finally, to Roche, Merck and Sanofi-Genzyme for the educational grants that allowed us to host the weekend. It is much appreciated I am sure the event will be remembered for many years to come. We have several action points to follow-up on and I think that MSers living in the Western Isles will now get more attention. For example, I definitely want to study the epidemiology of MS on the Isles in more detail. I suspect the cause of MS is to be found in Western Scotland and the Scottish Isles. DrK hinted at tweaking his off-label cladribine protocol so that it can be used safely on the Islands; dare I suggest he call it 'The Island Cladribine Protocol'?

I am convinced that doing research days away from London is a way to reach many more pwMS and their families. We will let you know when our Stornoway talks go live on YouTube. If you have any suggestions where you think we should hold our Barts-MS day in 2019 please let us know.




ProfG    

13 comments:

  1. 2019...What's the prevalence of ms on the Greek islands..very high:-)

    Only joking. Thanks to the people of the western isles for their hospitality and especially to Rachel for making this happen and the Glasgow team for letting us join them for the weekend.

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  2. Why not go to Orkney or Shetland? The incidence is very high there.

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    1. That was discussed and a trip could be arranged in the future.
      Thanks to everyone for making this visit such a success for all concerned.

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  3. I think taking your expertise on a tour of the UK is an excellent idea. There are many places in the South of England you could go to as well. For example, I live in the Portsmouth area and we would love you to come to the South coast next year.

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    1. Please consider a visit to beautiful Devon or Cornwall - you would have a very warm welcome and I'm sure there would be plenty of clotted cream teas and Cornish pasties to enjoy during your stay, not forgetting the stunning beaches and countryside!

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  4. Thank you for such an interesting and informative day - it really was very much appreciated by both MS sufferers and their friends! Wouldn't it be great if we could organise this as a yearly event and then you guys could see even more of our beautiful island, and enjoy our very welcoming hospitality :) !

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    1. Thank you so much for having us, it was great to meet you all and the hospitality and your beautiful island was outstanding. I'm sure we'll be back!

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    2. Can we do an exchange and get Prof chandran to speak in London?

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  5. Stonehenge..The Callanish Stones

    Why so many stones and people with MS over there..?

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  6. Early visitors left their architecture and their genes.

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  7. Hi All,

    This was an amazing weekend and I am really glad to have had the chance to visit Stornoway and see the people affected with MS up there first hand.

    I was chatting with someone in my MS clinic today and they told me that they had spent 7 weeks in Stornoway working at the age of 17 just before their first attack of MS at the age of 18. This was the only time they had visited the island. Interesting....

    Beyond that my colleagues and I were talking about how we could improve things. The islands have unique challenges and they will be difficult to overcome. The GPwSI option would be one approach. An MRI on the island would be amazing but I'm not sure if it would be possible. One of my colleagues tells me that many areas in India often buy second hand MRI machines.

    The geographical location where I run my service faces challenges of a different nature that demand a lot of time but I hope that as a team the MS neurologists in Glasgow can work to help Rachael develop things more in the future.



    Niall MacDougall

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  8. Just seen Tom Hunter interviewed on the One Show and his foundation looking to support ideas from Scottish young people that can change the face of Scotland.

    Maybe one of the young people who attended your weekend in Stornaway could consider promoting as a cause the problems with MS in Scotland.

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