Why is this work needed?
The landscape of MS care in the UK has been changing in recent years, largely prompted by the evolution of new treatment paradigms for relapsing remitting MS (RRMS). The 2015 Association of British Neurologists Prescribing Guidelines place greater emphasis on earlier treatment and more rapid escalation of therapy where possible, in the context of UK treatment rates which are currently lower than international comparators.
However, this greater emphasis on treatment along with the increasing range of disease modifying drugs (DMDs), the risks and the time-consuming monitoring that go with them, are stretching the capacity of MS specialist services – and especially MS specialist nurses - to the maximum.
In April 2016, the MS Trust’s ‘Let’s Make MS Care Fair’ campaign surveyed over 1500 people with MS and the results of that report reflected that many people with progressive MS – who do not benefit from disease modifying drugs - feel increasingly distant from their MS team.
The challenge for MS services is how to use their resources to support the drive for earlier and higher levels of treatment for relapsing MS, while still ensuring that everyone with a diagnosis of MS can receive appropriate, timely, high quality care for all aspects of the condition.
What has the MS Trust done about this?
MS Forward View was launched in autumn 2015, following the GEMSS (Generating Evidence in MS Services) programme, which highlighted the challenges facing MS specialist teams in the UK. To address the issues, we brought together an expert advisory group to help us determine the priorities required across the MS sector to instigate practical and sustainable change. This group was made up of health professionals, managers, subject matter experts and people with MS, representing: the MS Forward View lay forum, the UK MS Specialist Nurse Association (UKMSSNA), the Association of British Neurologists (ABN), Therapists in MS (TiMS), the MS Society, the Royal College of Nursing (RCN), Health Education England, the UK Clinical Pharmacy Association (UKCPA) neurosciences group, and the British Society of Rehabilitation Medicine (BSRM). The relevant pharmaceutical companies were also represented.
The objectives for this vital project were to:
- Describe the barriers and enablers to equitable provision of care, including the impact of current funding flows in England
- Identify where there is greatest scope to use service capacity more effectively and use existing resources in new and different ways
- Map current provision of MS services across the UK
- Contribute to further joint work on a revised consensus on standards of MS care
Over the course of the project, we have achieved these objectives and completed:
- A final report for the project: MS Forward View – a consensus for the future of MS services, containing our nine priority actions for change in the MS sector, as endorsed by key organisations in our advisory group
- A short film based on our final report
- A guide for health professionals and NHS managers on how MS services are funded in England
- An updated Case for Equitable Provision report, mapping the provision of MS nursing in the UK
- A ‘heat map’ of the UK showing the levels of provision of MS nurses by CCG (clinical commissioning group) / Health Board area
- Surveys of MS nurses, neurologists, neuro-specialist pharmacists and rehabilitation consultants (for more information contact firstname.lastname@example.org)
- A report on care for people with advanced MS
- A report on improving the efficiency of DMD pathways
- A catalogue of models of innovative practice in MS services in the UK (for more information contact email@example.com)
The MS Forward View consensus statements
Based on the evidence we collected from the project, and the feedback we received from our lay forum and advisory group, we created the MS Forward View consensus statements. The purpose of the MS Forward View consensus statements is to present a shared view about the priority actions needed to make MS services fair, efficient and effective for everyone with MS in the UK. These consensus statements set out our ambition for how we can make services work better for everyone with MS and will help the MS sector to be more focused and coordinated in our efforts to improve care for everyone with MS. Read more about the MS Forward View consensus statements.
How has MS Forward View involved people with MS?
It has been vital to ground the work of the MS Forward View Project in the needs of the people using the services in question – people living with MS. So, we decided to recruit three lay members to join our advisory group, through an open selection process, and set up an online lay forum to provide feedback on our work and improve our understanding of the realities of MS services from the perspective of people actually using them.
Our MS Forward View advisory group lay members
Amy Mackelden, Pia Reynolds and Caroline Smith were recruited to join the advisory group. They joined the group’s discussions, representing the views of people with MS, and worked with us on the project throughout the year, using their experiences and skills to contribute to our work. You can read more about Amy, Pia and Caroline.
The MS Forward View lay forum
We also launched an online discussion forum of people living with MS from across the UK, including carers, who supported our three lay members in representing people with MS and the services available to them. More than 60 people successfully applied to be on the forum, and the group discussed a wide variety of topics and issues raised by the project, continuously contributing to the team’s understanding of MS services and of MS. The members included people with both relapsing and progressive forms of MS and carers, with significantly differing experiences of services. The views of the forum were also represented by Amy, Pia and Caroline at the advisory group meetings.