Daisy Doncaster – Programme Officer for the Advanced MS Champions Programme – reports from the House of Lords on 20 February, when the MS Trust formally launched this vital project.
Last Tuesday night (20 February), the MS Trust held an event at the House of Lords to celebrate the Advanced MS Champions Programme with key supporters and stakeholders, including members of The October Club Committee, without whose support the Programme would not be possible.
It was a lovely evening and a wonderful opportunity to share our progress so far on this vital piece of work with a small group of our fabulous supporters. The stunning setting (see proof above in the form of a very high quality photo taken following the event!) certainly added to the atmosphere. As a member of the Programme Team, it felt very special to formally mark the Programme, and there was definitely a sense of pride in the room in sharing the progress we’d already made so far. Although at the same time, the enormity and importance of what lies ahead was clear too...
MS nurse consultant at Salford Royal NHS Foundation Trust, Karen Vernon, spoke at the event, and said that MS care across much of the UK is inequitable, due to the increased (and increasing) demands on specialist services, particularly around managing and monitoring high risk disease modifying drug treatments. MS health professionals are desperate to redress the balance and ensure everyone with MS receives the care they need and deserve. MS nurses, she said, originally developed their skills and expertise by providing tailored, coordinated care and specialist advice and symptom management: the “bread and butter” of nursing. She praised the MS Trust’s Advanced MS Champions Programme, and emphasised the fundamental importance of this work.
This project shouldn’t be needed – everyone with MS should be able to access the care they need – but in the current context of MS services it is so very much needed. The MS Trust – with its history of supporting and championing MS specialist health professionals – is the organisation to deliver it.
David Martin, CEO of the MS Trust, also highlighted the value of this Programme, emphasising the importance of evaluation to demonstrate the difference an Advanced MS Champion can make – to people affected by MS and their families, to MS services, and to the NHS – to ensure that this model of care can be rolled out across the UK in future. He noted that the Programme absolutely would not be possible without the support of The October Club. The vital contribution of this organisation will allow the MS Trust to run a programme that the MS community agrees is urgently needed and to demonstrate the value of the role of an Advanced MS Champion in an MS service.
In 2016 the MS Trust published a report – Improving Services for People with Advanced MS – as part of its MS Forward View Programme, a highly influential project to identify the priority actions needed to ensure that everyone with MS receives effective, efficient and equitable care. This report highlighted, utilising a range of evidence, that people with advanced MS are a group who are increasingly at risk at being lost to specialist services, but for whom tailored and coordinated interdisciplinary care is essential. One of the nine priorities agreed on by the MS community as a result of MS Forward View was:
Every MS team should have a named professional lead for advanced MS. People with advanced MS and those who care for them have a particular need for coordinated care from a wide range of services. For some, this includes timely access to palliative care. The lead for advanced MS should be responsible for involving the wider network of services, developing care pathways and making sure people with advanced MS know what services are available to them.
This was the inspiration for the Advanced MS Champions Programme – a three year pilot to establish six specialist practitioners to focus on care for people with advanced MS in different sites across the UK. In 2017, we were thrilled to announce our partnership with The October Club, whose support made this transformational project possible.
You can read more about the Advanced MS Champions Programme, and the role of an Advanced MS Champion.
Work is already well underway for the pilot programme: a Working Group and Steering Committee have been set up and had their first meetings; we’ve drawn up an evaluation plan; and we’re talking to potential first sites to involve in the pilot. We are currently on track for the first Advanced MS Champion to start in post in late summer 2018. We look forward to keeping you updated on this essential project!
Daisy Doncaster, Health Professional Programme Officer