This website uses cookies for anonymised analytics and for core features such as voting on polls and comments. See our privacy and cookies policies for more information.


Get TFN updates
The voice of Scotland’s vibrant voluntary sector

Published by Scottish Council for Voluntary Organisations

TFN is published by the Scottish Council for Voluntary Organisations, Mansfield Traquair Centre, 15 Mansfield Place, Edinburgh, EH3 6BB. The Scottish Council for Voluntary Organisations (SCVO) is a Scottish Charitable Incorporated Organisation. Registration number SC003558.

Charity manifesto calls for extra support and an end to dehumanising benefits tests

 

The MS Society Scotland has released its manifesto for next year's election

A health charity is calling all politicians and parties to campaign on improving care and support for people living with multiple sclerosis (MS) ahead of next year’s Scottish Parliamentary Elections.

MS Society Scotland’s manifesto is asking prospective MSPs to get #LouderForMS and keep issues that affect the more than 15,000 people living with MS in the country at the forefront.

Research released earlier this year highlighted the high prevalence of MS in Scotland with 720 people diagnosed every year.

MS Society Scotland’s manifesto asks politicians to commit to taking action in three core areas as they begin campaigning with the aim of taking seats at Holyrood come May 2021:

  • Care, support and treatment for people living with MS is person centred, consistent and based within the community
  • Creation of a world-leading, rights based social security system co-produced with people affected by MS
  • Supporting physical and mental wellbeing and building resilient communities

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.

Actor Lewis MacDougall has lent his voice to MS Society Scotland’s manifesto launch video which outlines key issues for the upcoming Holyrood elections.

His mother was diagnosed with MS before he was born and passed away when he was just 11 years old.

Lewis said: “Care and support for people living with MS is a cause very close to my heart. My experiences have shown me how important it is to ensure that the right assistance is available for people affected by the condition, so I’m pleased to be playing a part of the MS Society Scotland manifesto.

“I hope that candidates of all parties listen to what has been said and commit to creating a system that works better for the people it’s supposed to help.”

Since the 2016 election a number of new treatments have become available for people living with MS in Scotland, including the first treatment for the primary progressive form of the condition. However, the MS Society’s My MS MY Needs surveys in 2016 and 2019 show that the number of people taking a disease modifying treatment who could potentially benefit from one has remained consistent.

The 2019 survey also found that people receiving benefits are twice as likely to be struggling on their current household income than people with MS who are not in receipt of any benefits. MS Society Scotland is calling for a social security system that makes sense, including the scrapping of the nonsensical ‘20m rule’ which sets an arbitrary benchmark for higher levels of support with no evidence to back it up, when the devolution of powers is completed.

The Covid-19 pandemic has only also increased isolation and loneliness as support mechanisms were unavailable. A report published in June 2020 found that: 36% of respondents told us they felt anxious; 13% said they felt scared and 28% said they felt frustrated.  

MS Society Scotland director, Morna Simpkins, said: “Everyone living with MS, their family and friends has a unique MS story and it’s vital that the health, social and financial support available in Scotland reflects that.

“Our community has told us that people still face many challenges in accessing the care, support and treatments that they need to effectively manage their condition and this needs to change.

“We have been heartened by the progress made as social security becomes devolved but there is still much work to be done to reach a longer term vision which removes the financial barriers to independent living for people with fluctuating neurological conditions like MS.

“Perhaps more than ever mental and emotional health is at the forefront of people’s minds and our research tells us that members of the MS community are more likely to be affected by isolation and loneliness.

“Our manifesto lays out these key issues for people living with MS across Scotland and calls on candidates to recognise the impacts they have.

“We want prospective MSPs to get louder for MS for their constituents as they campaign and commit to being bold for real change should they be elected.”


David Trotter from Dalkeith was diagnosed with MS towards the end of 2004 following a relapse where he lost power in his right arm and leg, and has used a crutch to aid his mobility since.

He has gone through the Personal Independence Payment (PIP) assessment process and its predecessor Disability Living Allowance (DLA) since being diagnosed.

David said: “I’ve found that as time goes on and I’ve been hit by other relapses I get easily fatigued and the strength in my limbs isn’t great at all so I can’t walk very far or for very long. My arms struggle for accuracy and I can find it difficult to type or write things down.

“In the past I was on DLA which transferred to PIP and as I’m not able to work I’m now on Universal Credit as well.

“Finding what I needed to apply wasn’t too bad but the problems started with the form which is around 40 pages long. Both times I’ve completed it I’ve needed help from my partner as there’s so much writing to be done.

“The rules in moving from DLA to PIP changed to include the 20-metre-rule, from 50 metres.

“Initially, I wasn’t too concerned as I know how far I can walk – and it isn’t 20 metres - but when it came to the assessment they disagreed with me and decided that when I said I could walk 10 steps without pain that meant 50 metres, which are obviously quite big steps, rather than the 8-12 metres in total that I know it is.

“That led to me appealing and a long, drawn-out process.

“I’ve always been comfortable with needing help and claiming through different systems because I was able to work. They were giving me the money to pay for a car and I was going to work, getting my job done and paying back in tax.

“Of course, when they took the car off me I couldn’t go to work any longer. I felt really despondent and like I’d gone from being a valuable member of society to being worthless in the eyes of the people who were supposed to be helping me.

“My mood dropped dramatically and I didn’t leave the house for five or six months while I tried to look up how to appeal and what I needed for that.

“The PIP process made me feel like a number – it’s a one-size-fits-all. People with MS all have very different experiences, let alone people with different conditions.

“My nearest bus stop is 200 metres away and I don’t know where I’m supposed to be able to go. I can’t do little things like pick up my prescription, go to the doctor or help drive my girlfriend somewhere.

“I’d like politicians to learn from the mistakes that people like myself have had to live with. A one-size-fits-all system just doesn’t work for us. Every person with MS is completely different and different from people with other conditions. We shouldn’t be made to feel like we’re under interrogation at an assessment but relying on medical advice from doctors and clinicians.”

To read MS Society Scotland’s manifesto in full and find out more please visit: www.mssociety.org.uk/scotlandmanifesto.

 

Comments

Be the first to comment.