Improving Services for People with Advanced MS is a report from our MS Forward View project, highlighting the need for a focus on care for people with advanced MS and presenting recommendations for improvements in this care.
We focused on advanced MS for three reasons:
- people with advanced MS make up a significant proportion of the MS caseload (approximately 30-40%)
- people with advanced MS have less contact with MS services. Research by the MS Trust indicates that people with advanced MS who are not eligible for DMDs have less contact with MS services
- people with advanced MS incur greater costs to the healthcare system. Evidence shows that healthcare costs increase with disability and those with severe disbaility spend an average of 13 more nights in hospital per year than those with minimal disability.
"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 many, 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."
As a result, the MS Trust implemented the Advanced MS Champions Programme, to start making this a reality.
Priorities to improve services for people with advanced MS
Based on what was learned, everyone with advanced MS should:
- know what role they play in their own care and how the service will support them to make the choices that are right for them
- receive written information about how the MS service works for them. This should include the name of the healthcare professional who will coordinate their care, how to contact the service and how a neurologist and/or neurorehabilitation consultant will be involved
- have a named MS specialist healthcare professional who will coordinate their care, typically an MS specialist nurse or, in some cases, an allied health professional with expertise in MS. The named MS specialist should take a leading role in ongoing management, involving the neurologist and/or neurorehabilitation consultant as required, for example, where there are complex drug interactions or difficult interplay between symptoms or comorbidities
- be offered an annual review with their MS specialist healthcare professional, or someone else in the multidisciplinary team with specialist expertise in MS, and should know how to access services in between appointments if need arises
- have a personalised care plan developed in conjunction with the MS specialist healthcare professional who is coordinating their care and in collaboration with the multidisciplinary team.
Every MS service should:
- have outcome-focused service aims that are appropriate for their entire caseload, are centred on the person with MS, drive early involvement of rehabilitation and a proactive multidisciplinary culture. From this project and other work by the MS Trust, we recommend – as a starting point – that a comprehensive MS service aims to:
- Minimise disease impact.
- Optimise function.
- Maximise self-management.
- Promote well-being.
- Avoid complications.
- Recognise comorbidities.
- Support shared decisions.
- have a service specification that clearly defines how services for people with advanced MS are provided and how carers are supported. The service specification should make clear how the MS specialist and neurorehabilitation teams will work together and involve wider services such as palliative care
- communicate and market the service specification to people with MS, carers and other services and work with managers and commissioners to use the service specification as a lever for improvement
- offer alternatives for people with MS who find it difficult to attend hospital clinic appointments
- implement formal pathways to trigger involvement of neurorehabilitation and ensure multidisciplinary working, including joint meetings to make care decisions and coordinate timely involvement of other services, such as palliative care and primary care
- provide training for the multidisciplinary team and other health and social care professionals about the needs of people living with advanced MS and best practice in multidisciplinary working.
In addition, there are other issues that individual teams should consider as part of their advanced MS service review:
- whether independent prescribing of symptomatic treatments by MS specialist nurses and/or allied health professionals with expertise in MS, supported by clear protocols, is a facilitator of improved services for people with advanced MS. It may enable more efficient management of whole episodes of care and reduce reliance on GPs to prescribe symptomatic treatments
- how their current home visit policy affects people with advanced MS, this is likely to be particularly relevant for hospital-based teams where there are often more restrictions on home visits and travel distances may be greater. Being able to offer a home visit and being able to visit people with MS in residential care homes when needed is an essential part of a responsive service for people with advanced MS.