MS Society Scotland has said more needs to be done to help the 15,000 people living with the condition
More investment is needed to support people living with long term conditions, a Scottish health charity has said as it campaigns ahead of the Holyrood elections.
The Multiple Sclerosis (MS) Society Scotland is highlighting the need for greater provision to tackle isolation and exclusion in the wake of the pandemic in their latest manifesto.
Candidates for the Scottish Parliament elections are being asked to make an improvement in services and the reduction of digital exclusion a part of their campaigning in the coming months.
More than 15,000 people in Scotland have MS – one of the highest rates in the world. People affected by the condition are significantly more likely to experience loneliness and social isolation.
The MS Society Scotland wellbeing and connected communities ‘mini manifesto’ includes three core priorities:
- Greater provision of mental health services including emotional support when needed
- Connecting people and communities by tackling digital exclusion
- Tackling isolation and loneliness as a result of living with MS which increased during the Coronavirus pandemic
In a 2018 MS Society survey, 42% of respondents said that they had experienced both loneliness and social isolation while around half of people living with MS will experience depression at some point in their life.
These feelings have only increased since the start of the Covid-19 pandemic as people have been unable to use their usual support mechanisms as a result of lockdown with many services being paused. The MS Society’s Life in Lockdown report published in June 2020 found that 36% of respondents felt anxious, 13% felt scared and 28% said they felt frustrated.
Figures remained similar when the survey was repeated in August 2020, while 64% of Scottish respondents said they were struggling with low mood.
MS Society Scotland director Morna Simpkins said: “We have long understood the importance of keeping people connected through the work of our local MS Groups, volunteers and fundraisers. Together we have adapted our services during the Coronavirus pandemic to meet the needs of people affected by MS.
“The resilience of our community has been remarkable in providing support to people affected by MS nationwide but more investment is needed from the Scottish Government to ensure nobody is left behind.
“Isolation and loneliness as a result of living with MS are more prominent than ever and it is key that, as services being to return, those with long term conditions are not forgotten about.
“While a change to online service delivery has broadened horizons for some, we know that it doesn’t suit everyone. One of the main barriers that our community has highlighted during this period of uncertainty is that poor digital infrastructure, with slow broadband speeds being a major factor, has affected people’s ability to access online support.
“We’re urging candidates for the elections in May to raise their voices in support of these issues and get #LouderForMS. We want to see emotional support available for everyone when they need it and a commitment from our elected representatives and policy makers can make a real difference to thousands of people.”
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.
MS Society Scotland’s #LouderForMS campaign aims to keep issues that affect people living with MS at the forefront as polls near.
Since the start of the pandemic MS Society Scotland’s Wellbeing Hub has supported hundreds of people with their emotional wellbeing by reducing levels of anxiety, stress, isolation and loneliness.
The project also aims to support physical wellbeing with increased physical activity levels, improved strength, stamina, balance, mobility and reduced fatigue.
People continue to be able to remotely access one-to-one physio appointments, counselling and activities like tai chi, Pilates and yoga.
The charity would like to see a commitment from incoming MSPs to make sure that projects like this can continue to deliver vital support where it’s needed.
Jodie McQuillian, 31 from Alloa, was diagnosed with relapsing MS in 2015.
She accessed counselling and physiotherapy services through the Wellbeing Hub.
Jodie said: “When I was 21 I got optic neuritis so went to the optician who referred me to the hospital for an MRI. At the time I couldn’t get a diagnosis of MS after just one episode so that didn’t happen until another five years later.
“I had a relapse following the birth of my son, who’s four now, which I never really recovered from. After my third relapse at the end of 2020 I saw my MS Nurse and she suggested I take a look at some of the online services like MS Society Scotland’s Wellbeing Hub.
“At first I signed up for physio because the most recent relapse had affected my legs and balance so walking had become difficult.
“I’ve done four sessions on zoom and it’s been great. I’ve been following the exercises to help with the issues I was having and build up some muscle. I really felt like I’d lost it all so building that strength back up has been good.
“It’s given me some confidence too in the things that I was already doing.
“The Wellbeing Hub provides counselling as well which is not something I would have thought of as an option unless I’d seen it through the MS Society. But I’ve just had my first session and I took a lot from it.
“I’m really glad it was suggested to me as I don’t think I ever really dealt with my diagnosis and I needed it. Because I wasn’t in the middle of a relapse when I was diagnosed I didn’t think MS was affecting me too much so didn’t really come to terms with it.
“That just means it’s all the better to do it, so that when issues do arises I’m more able to deal with them.
“Even just speaking out loud helps and I can see how it will help more in the future.
“Getting the chance to speak to someone impartial and neutral is welcome because the sort of people you will speak to about it you know really well.
“Particularly during lockdown things have been harder for everyone so having that outlet has been great.
“The whole service is great, particularly with everything going on at the moment. Hopefully the accessibility of it will encourage more people my age to engage with the services that are on offer.”