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 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 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 disease modifying drug (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 disease modifying drugs (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 Forward View final report
The final report for this project – MS Forward View: a consensus for the future of MS services – tells you how we reached these statements, the findings of the project and the importance of the consensus in influencing change for the future.