The MS Trust and Salford Royal NHS Foundation Trust are delighted to announce the appointment of the UK’s first Advanced MS Champion.
Advanced multiple sclerosis (MS) can have a devastating impact. Symptoms are complex and debilitating, and may include mobility and balance problems, severe pain and fatigue, difficulty swallowing, spasticity, bladder and bowel problems, and loss of memory. The MS Trust estimates up to 40,000 people in the UK have advanced MS.
However, MS Trust research has found that many people with advanced MS report losing contact with MS specialist services as their condition gets worse, and have to rely on informal care from family and friends, and sometimes have to manage the condition alone.
Thanks to funding from city philanthropists The October Club, the MS Trust launched a transformational three-year programme to change that. The Advanced MS Champion Programme will fund six new Champions, over a three-year period, in select locations across the UK, transforming the lives of an estimated 5,000 people with advanced MS.
Lindsay Lord, based at Salford Royal NHS Foundation Trust, is the UK’s first Advanced MS Champion and will bring much-needed care to people in the local area living with the complex and often devastating symptoms that characterise advanced MS, as well as providing support to families and carers.
Over the next three years, the MS Trust hopes to demonstrate how the Champions can make a real difference in delivering efficient, equitable and joined-up MS services that work for people with MS and save the NHS money by reducing emergency hospital admissions. The charity believes this will make the case for these roles to be rolled out across the NHS so that no one has to manage MS alone.
Megan Roberts, Health Professionals Programme Manager at the MS Trust, commented:
Our work over the past five years has shown that people with advanced MS and their families all too often miss out on vital specialist care. The generous support of The October Club has enabled us to set up the Advanced MS Champions programme which we hope will transform the lives of people living with advanced MS and their families. Everyone at the MS Trust is hugely excited about the appointment of Lindsay. We know that she’ll make a huge difference to local people living with this debilitating condition.
Lindsay Lord, Advanced MS Champion, added:
I am really thrilled to have been appointed as the MS Trust’s Advanced MS Champion. I know it is going to be a challenge, but it’s a challenge I am hugely excited for! This role will help me to deliver care and support to the people who need it most. I want to show people with advanced MS that they matter, that even small changes can make a difference, that we have not given up on them and they should not give up on themselves. I am truly grateful to the MS Trust for identifying the need for this role and supporting it.
Advanced MS Champions
Our Advanced MS Champions programme funds specialists to provide guidance and coordinated care for some of the UK's 40,000 people with advanced MS – who too often miss out on specialist MS care.
Generating Evidence in MS Services
We collected evidence about how services work best for people with MS and developed tools to build the skills and capabilities of MS nurses.
Specialist Nurse Programme
Our Specialist Nurse Programme funds and supports MS specialist nurses in areas with the poorest provision.
The ADAMS project
25/05/2022 - 00:00
Dr Benjamin Jacobs spoke to us about a new study on the genetics of MS in people from minority ethnic backgrounds which may eventually shed light on why MS can be more severe for Black and Asian people.
Roxy's journey to diagnosis
16/05/2022 - 00:00
Roxy talks about her MS journey and the importance of sharing her own experiences to ensure that others don’t face the same challenges when receiving a diagnosis.
Lis' MS journey: one woman and her bike
04/05/2022 - 00:00
In May 2022, Lis will be heading off on her 5,000 mile cycling challenge. She shares how the idea came about and discusses why the support of the MS Trust was invaluable following a multiple sclerosis diagnosis.
Sign up for updates from us
Keep up-to-date with the latest MS news, explore new research, read the stories of people living with MS, find out practical tips from MS experts, and discover exciting fundraising opportunities.