Today the MS Trust launches its #FairMSCare campaign, aimed at raising awareness of the vital need for more multiple sclerosis specialist nurses across the UK.
Latest figures show there are now approximately 130,000 people in the UK with MS, an increase of 21% on previous estimates. For many of these people, MS nurses are a lifeline but, worryingly, thousands are missing out on the vital care and support they provide, simply because there are currently not enough MS nurses in the UK, and the nurses we do have are juggling unmanageable caseloads.
Here at the MS Trust we believe that everyone with MS should have access to an MS specialist nurse. MS nurses are vital for people living with MS. They can help them adjust to diagnosis, consider complicated treatment options, manage a wide range of symptoms and learn to live well with an unpredictable, often debilitating, lifelong condition.
MS nurses also save the NHS money, with our research showing that, on average, each specialist nurse saves the NHS £72k in fewer hospital admissions, visits to A&E, neurologists and GPs.
MS Trust research confirms the desperate shortage of MS nurses across the country. Up to 80% of people with MS are living in areas where MS nurses have caseloads in excess of the sustainable caseload figure of 315, and of those people, nearly a quarter (36,000) live in areas where caseloads are twice the recommended level.
We estimate that up to 115 new MS specialist nurses are needed to address this postcode lottery and ensure everyone living with MS in the UK can access the specialist support and care they need to live well with MS.
The MS Trust is working hard to address the shortage of MS nurses. Through our Specialist Nurse Programme, we’ve already funded seven extra nurses in the areas across the UK that need them most.
Jenna Chudasama, 32, from Leicester, was diagnosed with MS aged 22, while studying teaching at university. Jenna’s MS nurse is Jon Maisey, the first nurse the MS Trust funded as part of the Specialist Nurse Programme. Jenna says Jon has been an ‘invaluable’ support.
When I met my MS nurse everything started to make sense. I could ask the questions I wanted to: What is MS? How is it going to affect me and my life? I left my first appointment thinking, ‘I can do this. Yes I’ve got this condition, but I can deal with it’.
“I’m a natural worrier and I need answers to my questions or they will just fester in my mind and that’s where Jon comes in. Whether it’s having issues with a DVLA application or concerns about my holiday, Jon is able to give me an answer instantly, and if not, he calls back when he does have the information.”
“I am so grateful and I have always felt so blessed that I have a nurse who is constantly there to support me in every way. It’s worrying for me to know some areas don’t have that support. I can’t imagine not having Jon to contact.”
David Martin, CEO at the MS Trust, commented: “MS specialist nurses do a fantastic job but they are coming under increasing pressure to deliver the same exceptional level of care while taking on more and more patients. As a result, we know that many people with MS are missing out on the specialist support they need and deserve.
“This is simply not right or fair. We’ve launched our new campaign to highlight this desperate shortage of MS nurses across the UK, and we now call on the government and health ministers to work with us to ensure people with MS are not left to manage their MS alone.”
Susan's story - My nurse gave me hope that I can actually have a life
12 February 2019
Susan was diagnosed with secondary progressive MS aged 51, here she talks about the positive impact her MS nurse has had on her wellbeing.
Specialist Nurse Programme
Our Specialist Nurse Programme funds and supports MS specialist nurses in areas with the poorest provision.
Fair MS Care
Thousands of people with MS are missing out on the vital care and support they need, simply because there are currently not enough MS nurses in the UK. This is not fair. Here at the MS Trust we're working hard to address the shortage of MS nurses. But we can't do it without you.
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