Last Updated on 02/11/2023 by Crip Life
Six Multiple Sclerosis charities warn of the urgent need to overhaul MS specialist provision and mental health services. The lack of MS specialists is leading patients to be mis – or undiagnosed.
Six leading MS charities on Tuesday 11th July 2023 presented urgent service provision recommendations to the Minister of State for Disabled People, Health and Work, Tom Pursglove.
What is Multiple Sclerosis?
Multiple Sclerosis (MS) is a neurological condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.
It is estimated there are over 130,000 people with Multiple Sclerosis in the UK, and that nearly 7,000 people are newly diagnosed each year. This includes some well-known people such as Paralympian Kadeena Cox, reality star Jack Osbourne and professional football coach and former Lioness Mary Phillip.
MS charities present urgent service provision recommendations to the government to support the thousands of ‘forgotten’ MS patients
The six charities – MS Society, MS Trust, Overcoming MS, Shift.ms, MS-UK and Neuro Therapy Network – created their set of joint policy recommendations for change. They are calling for:
- An NHS neurological conditions mental health pathway, to give people with MS access to appropriate mental health support.
- A new mental health training package for the healthcare professionals working with people with MS. This should cover how to compassionately diagnose people with MS, identify people’s mental health needs and signpost people to relevant support.
- Annual MS review appointments to cover all of a person’s needs, including mental health and cognitive needs. These reviews should take a holistic approach to mental wellbeing and health practitioners should evaluate how mental health support has helped their patients.
David Martin, CEO of the MS Trust, says: “We presented our findings for MS mental health service provision to the government minister for disability on 11th July, backed by a coalition of five other MS charities, including the MS Society. We urgently call for the government to reconsider how it prioritises care, as well as diagnosis, of long-term health conditions like MS.
He added: “Millions of pounds and tens of thousands of hours are being wasted through the lack of specialist support at critical points in the care pathway. Through the MS Trust’s programmes, which place MS Nurses and Advanced MS Champions directly into the NHS, we are demonstrating a tangible and cost-effective way to make a difference. This approach is not only saving time and money, but most importantly empowering and supporting MS patients earlier.
Prioritising this vital care and early diagnosis will have a significant positive impact on the mental health of those living with MS, as well as enabling treatment for symptoms to commence at a much earlier stage, resulting in huge physical health benefits.”
MS patients’ impact on their mental health
The MS Trust’s Life changing: mental health and MS report with responses from over 2,000 people with MS, states that 94% of patients said their MS has affected their mental health, with over 56% reporting moderate to severe mental health problems, 60% of patients experiencing low self-esteem and over half (51%) of MS patients reporting feelings of isolation and loneliness.
As a result of this lack of support, one in two (52%) of patients are waiting three years or more for a diagnosis.
Some of the people who shared their experiences and challenges of living with MS included:
- Adil from London who has battled dark days of depression, and the criticism of the public who don’t understand his ‘invisible’ illness,
- Yvonne from Shropshire whose hardest mental health experience was in the five years of seeing seven consultants across foot health, bowel specialists and more before finally getting access to a neurosurgeon and a correct diagnosis (and treatment for) MS.
- Nigel from Bradford, an actor and singer-songwriter, who believes that being homeless was a trigger for his MS to start. Nigel has an inspiring story as he has got married and had children since his diagnosis and he shares good and bad mental health days with the condition and how it is not a death sentence.
- Will Berard candidly shares the impact depression has had on him and why we need to get better at recognising depression as a symptom of MS and not just because “MS is a bummer, man”.
- Carla King who lives with MS and shares her personal techniques for coping with the mental health challenges of this neurological condition.
Sarah White, MS Trust Lead MS Clinical Nurse specialist said: “The MS Trust Life changing: mental health and MS report gives a real insight into the range and depth of challenging symptoms a person with MS may experience. It highlights just how isolating and damaging to mental health these symptoms can be – for example, fatigue, chronic brain fog and bladder and bowel problems.”
She added: “It is critical that health professionals are better supported to enhance their understanding and ability to assist MS patients. We need to see an improvement in service provision across the country and the creation of more specialist roles – like MS Nurses and Advanced MS Champions. The MS Trust provides information to support symptom management, but the real key is getting more MS specialists to help manage day-to-day life.”
A role like an Advanced Multiple Sclerosis Champion (AMSC) or MS Nurse can save NHS Trusts thousands. In 2022 the AMSC role saved on average 52 hospital admissions per site, per year, saving each NHS site £465,376 annually – saving a total of 312 hospital admissions across the UK and around £2.8Million in NHS money.
For more information, read the Mental Health and MS: Joint policy recommendations.
Do you, or someone you know, live with MS? How has it affected your mental health and quality of life? Share your experiences in the comments box or on social media.