MS Society Scotland has called for politicians to commit to taking action that will help those battling the condition
A Scottish health charity is calling for the creation of a ‘right to rehab’ to ensure that everyone can access the support they when they need it.
The Multiple Sclerosis (MS) Society Scotland is asking prospective MSPs to campaign on increased support and better access to treatments and rehab services for people living with the condition in the second of their three mini-manifestos.
The charity has highlighted that many people living with the condition are unable to find timely access to the treatments, physio and support that could help them live well. MS Scotland has one of the highest rates of MS in the world with 15,000 people living with the condition across the country.
Candidates are urged to commit to three areas of focus in the run-up to the elections at Holyrood in May:
- Creation of a ‘Right to Rehab’, giving everyone in Scotland equal access to the right support in the right place at the right time
- Access to appropriate disease modifying treatments (DMTs) no matter where you live in Scotland
- Access to MS nurses when you need them no matter where you live in Scotland
MS damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think. The condition is relentless, painful and disabling.
The treatment landscape for people living in Scotland has evolved rapidly in the past few years with the first treatments for the primary and secondary progressive forms of the condition approved for us on the NHS in 2020.
There are now 15 disease modifying therapies (DMTs) available for MS with the most recent, ozanimod, given the green light just last week (Monday 8 February). Haematopoietic Stem Cell Transplantation (HSCT), a further DMT, was recommended for use at the end of 2019 but is not currently accessible in Scotland for those eligible.
These treatments can decrease the number and severity of relapses and there is agreement among the MS and clinical community that early treatment with a DMT can improve long-term outcomes.
However, MS Society research has shown that the number of people taking a DMT who could potentially benefit has remained constant in spite of this progress.
This has upped pressure on MS nurses and is only likely to increase further as the treatment landscape expands and more of the MS population become eligible for DMTs. As it stands the average MS nurse caseload in Scotland is 1 nurse to 384 people living with MS; higher than the MS Trust sustainable caseload ratio of 315.
Physio, occupational therapy and symptom management treatments can help manage people’s MS and support them to live more independently.
Many people living with the condition, however, are unable to access the support they need. 29% of people with MS had an unmet need for physiotherapy while a third (34%) had an unmet need to remain physically active.
The Covid-19 pandemic has severely affected people’s access to these vital but already under-resourced services.
The UK MS Register life in lockdown survey vividly demonstrated the impact that Covid has had on people living with MS in Scotland. 44% of respondents reported that their MS symptoms had deteriorated during lockdown and 85% reported that their walking ability or balance had got worse
MS Society Scotland is using its #LouderForMS campaign to keep issues that affect the over 15,000 people living with MS in the country at the forefront as polls near.
MS Society Scotland director, Morna Simpkins, said: “Finding effective treatments to stop MS and helping people to live well with the condition are at the heart of what we do.
“Over the past 20 years the number of therapies available for people with MS has greatly increased and we want to see a system that makes the most of those advances.
“We want the next government to raise the standard of MS services across Scotland, so that people with MS are able to access the right treatment, care and support, at the right time. No matter who they are, where they live or their circumstance.
“The importance of a ‘Right to Rehab’ has been thrown into sharp relief in the past 12 months as services have been restricted and people face new challenges in maintaining their mobility and health. Giving everyone in Scotland equal access to the right support in the right place at the right time should be a priority.
“New standards for neurological care and support from Healthcare Improvement Scotland are a welcome step in tackling variation in the support people receive and the government’s announcement of a funding programme to support collaborative work in achieving the priorities of the framework was very encouraging.
“We must go further to ensure meaningful improvements to MS services across Scotland are realised. So this election time we are asking politicians and parties to get #LouderForMS to ensure the voices of everyone affected by MS in Scotland are heard in parliament.”
Mary Douglas, 68, lives in the Bodrers and was diagnosed with relapsing MS in 1983. The retired NHS manager experiences daily fatigue, sight issues and bladder weakness.
Mary said: “Under normal circumstances I see my neurologist or MS Nurse at my local district hospital twice a year and I also access urology and physiotherapy services.
“Because of the Covid crisis services were very poor for people living with all sorts neurological conditions not just MS.
“I had a physio appointment scheduled all the way back in April and they phoned me up a few days before and said I couldn’t come so a lot of things have been delayed.
“My mobility decreased in the short term because I wasn’t been able to see a physiotherapist and although we had telephone consultations I can’t really see how that works properly as they must need to see how you’re moving. It must be very difficult to deliver a good service over the phone.
“I try to look after myself by eating well and exercising, which hopefully helps you to keep moving but if I can’t move so well I feel that I’m bound to decline.
“Services are returning very slowly and I’ve now seen a physio in person but it was a very long wait.
“It also took well over a year to be seen from when I was first referred to a urology specialist for problems with my bladder. I was offered an appointment towards the end of last year which I wasn’t able to attend. When I phoned to change the appointment I was told the nurse had retired and has not been replaced so no appointments were coming up for the foreseeable future.
“I was put back on the waiting list with no hint of when the service would start again as though it had just disappeared.
“Thankfully, I’ve now seen the urology nurse and had a phone consultation with the urologist but during the height of lockdown this meant it was difficult to go out as all public toilets were shut. I have to carefully plan where I go so I know I’ll have access.
“This has a huge impact on my life, as well as hundreds of others. This is a human right, and more needs to be done to ensure everyone has the access to support they need.
“On top of that we’ve been impacted by venue closures. Our local MS Society group provides support services like pilates and yoga which help with mobility and socialising but they’ve also had to stop which has a big effect. Community support is important too and it was just another facet which fell away in the past year.”
To read MS Society Scotland’s manifesto in full and find out more please visit: www.mssociety.org.uk/scotlandmanifesto