The MS Trust estimates that approximately 40,000 people in the UK have advanced MS. The term ‘Advanced MS’ describes the scale of impact that MS is having on an individual, rather than the type of MS they have. They are defined as people with multiple, ongoing and often complex symptoms which may occur simultaneously; have a dependence on others for some or all care and support needs and are likely to have significant disability.
A 2016 a report, titled ‘Improving Services for People with Advanced MS’ highlighted that this group within the MS community can often be neglected. In addition, the Trust’s survey – Let’s Make MS Care Fair – revealed that people with advanced forms of the condition often felt abandoned by specialist MS services.
Thanks to funding from city philanthropists The October Club, the MS Trust has launched a 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.
Commenting on her new role, Lindsay said: “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.”
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.
Source: MS-UK, 01/02/2019