Background to MS Forward View
Why was this project 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 prescribing guidelines from the Association of British Neurologists placed a greater emphasis on earlier treatment and more rapid escalation of therapy where possible.
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 – especially MS specialist nurses.
In April 2016, the MS Trust’s Let’s Make MS Care Fair campaign surveyed over 1,500 people with MS and the results of that report reflected that many people with progressive MS – who are not eligible for DMD treatment – 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 DMD treatment, while still ensuring that everyone with a diagnosis of MS can receive appropriate, timely, high quality care.
What did the MS Trust do about this?
MS Forward View was launched in autumn 2015, following the GEMSS 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.
What did MS Forward View achieve?
Over the course of the project, we have achieved the objectives above and completed:
- a final report for the project: MS Forward View – A Consensus for the Future of MS Services (PDF 572kb) containing our nine priority actions for change in the MS sector, as endorsed by key organisations in our advisory group
- a short MS Forward View film based on our final report
- a guide on Funding for MS Services in England
- an updated MS Nursing in the UK 2016: Report on Progress Towards Equitable Provision (PDF 487kb)
- a ‘heat map’ mapping access to nursing across the UK showing the levels of provision of MS nurses by clinical commissioning group/health board area
- a report on Improving Services for People with Advanced MS
- a report on Improving the Efficiency of DMD Provision
- a catalogue of case studies of innovative practice in MS services in the UK (for more information contact firstname.lastname@example.org)
- surveys of MS nurses, neurologists, neuro-specialist pharmacists and rehabilitation consultants (for more information contact email@example.com).
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 care fair across the UK. We developed these statements from the evidence collected during the project and from the views of our lay forum of people with MS and carers, and the organisations and individuals from across the MS sector who were part of the project advisory group. These consensus statements set out our ambition for how we can make services work better for everyone with MS and deliver value to the NHS. They will help the MS sector to be more focused and coordinated in our efforts to improve care for everyone with MS. They give us some common aims that we can work together to achieve.
We have also created a short MS Forward View film to accompany the final report and consensus statements, as a succinct summary of the MS Forward View project and the consensus we have reached. We hope this will help spread our vital message more widely.
The consensus statements:
- MS is a fluctuating, variable, life-long condition. To live well, every person with MS needs an individually tailored, flexible blend of symptom management, disease modification and neurorehabilitation. To meet this need, they require good care coordination with access to a multidisciplinary team bringing skills from both MS specialist neurology and neurorehabilitation. This should be the basis of how services are designed, delivered and commissioned.
- Services for people with MS should be centred around their needs and not around organisations. MS teams need to identify and connect with the wider neuro-specialist, community and social care networks in their area. They should work together to develop pathways, share learning, agree standards and undertake joint audit, so that people with MS experience seamless and integrated care. It is important to people with MS that they know how to contact the service in between routine appointments.
- Every person with MS should have an MS health professional who works with her or him to coordinate their care, especially at times of change. Good care coordination is an ongoing process that includes clinical assessment, helping people with MS set their goals and putting in place the support and care they need to achieve them. People’s goals will not only be medical and MS services should recognise the importance of overall health and well-being.
- Each year, MS teams should offer everyone with MS a comprehensive annual review with an appropriate health professional who has specialist expertise in MS. This is an opportunity to review and update the goals for care, making decisions together about the medical, emotional and social aspects of their health and well-being.
- 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.
- MS teams should make greater use of the clinical expertise of MS specialist nurses and allied health professionals with expertise in MS, strengthening their role as clinical leaders in MS. Establishing more diverse teams including sufficient administrative support will release them from time-consuming non-clinical tasks. This will help MS services get the best value out of specialist resources, making them more efficient and sustainable.
- There is an urgent need to make DMD monitoring safer, more efficient, cost-effective and convenient for people with MS. MS teams need effective IT systems that talk to each other so they can review test results from across the area they serve and reduce the need for face-to-face appointments. MS services should take advantage of existing projects across the NHS to improve information sharing and develop a more systematic approach to monitoring.
- There is a need to reduce unwarranted variation in access to and use of DMDs in MS and to ensure optimal value and outcomes from the DMD pathway as more treatments become available. A clinical consensus to review who should prescribe DMDs, to establish safe and practical monitoring regimes, to agree the content and intervals for reviews of disease activity, and to determine DMD stopping criteria as well as adequate provision for follow-on support, is called for.
- MS services need to be able to plan services effectively, measure and reduce variation, and audit and evaluate the outcomes of service provision. We therefore need a better understanding of the number of people with MS in the UK, their need for and use of MS treatments and services and a comprehensive set of measurable standards. The development of a common dataset and register of people with MS, used by every MS team in the UK, should be a priority.
As an MS community, we are committed to continuing to work together to deliver on the ambitions in these consensus statements. There is much to do to, but we are determined to make sure that everyone with MS gets the best possible care. The MS Trust and other organisations have already started work on delivering these priorities, for instance through our Advanced MS Champions programme.
How were people with MS involved?
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 as lay members of 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.
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.
Let’s Make MS Care Fair
The MS Trust report Is MS Care Fair? (PDF 1.6mb) was published in April 2016, presenting the results of a survey of over 1,800 people living with MS. We found that, while almost 80% of people with relapsing remitting MS had seen their neurologist and MS specialist nurse in the past year, around 40% of people with progressive MS hadn’t seen either of these key health professionals. 12% of people with progressive MS reported receiving no specialist support at all in the last year.
Furthermore, 40% of people with secondary progressive MS, reported seeing less of their specialists once their disease became progressive. Many reported being effectively ‘discharged’ from the care of their neurologist and their MS specialist nurse and left to manage alone, with increasing disability and more complex symptoms.
Many responses to the survey were echoed in the MS Forward View lay forum, and the findings of Let’s Make MS Care Fair contributed to the programme’s work and in developing the consensus statements.