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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
Labels: Barts MS research Day, Stornoway