Working smarter to meet the needs of people with progressive MS


Amanda Barrell, of Lemonade Studio, uses examples for the MS Trust’s resource for sharing examples of innovative practice to showcase teams implementing pathways to ensure no one has to face MS alone.

We all know people with progressive forms of MS cannot always access the services they need — equity of care is exactly what MS Forward View is calling for.

But with a finite number of MS specialist health professionals and an ever growing number of disease modifying drugs to deliver and monitor, we need to work smarter, not harder, to offer everyone the care they deserve.

MS specialist nurse Lesley Catterall, who works alongside MS clinical specialist Denise Middleton in Milton Keynes, says:

At the moment, some people with progressive disease are not always getting their needs met, because there is such a big focus on DMDs... There are just so many drugs that hospital-based nurses have no choice but to concentrate on them... Because we are community-based we can be a lot more flexible in how we work. We give patients the opportunity to be seen in their own homes, which is often much better for people with progressive disease.

When people move into the progressive phase of MS and come off DMDs, there is a danger they can feel abandoned by their healthcare team. Many people talk of this time as particularly difficult, almost akin to getting used to a whole new diagnosis.

When people come off DMDs, we see the patient together and do a hand over. They say they find it beneficial.

The pair, who also run their own, adapted version of the FACETS fatigue management course together with occupational therapists in the local neuro rehab service stressed the importance of annual reviews, as recommended in the 2014 NICE guideline on managing MS in adults. These reviews, they said, make sure no one, including those with progressive disease, loses touch with services. Lesley says:

We are lucky to be able to provide a service to patients on DMDs and with progressive MS equally and we work closely as a team... There are several examples of how services are implementing ways of ensuring annual reviews for all in the MS Trusts online repository of best practice case studies.

In Glasgow, for example, MS support workers have been recruited to identify and contact people with MS using GP records. They then use a generic standardised electronic assessment, which includes the UK Neurological Disability Scale, to carry out the review.

The support workers are not a substitute for the MS specialist nurses or specialist clinical services provided at the Queen Elizabeth hospital in Glasgow, but are a valuable 'safety net' to ensure everyone with MS has contact with the services they need or are anticipated to need.

The support workers signpost people with MS to relevant services: they have links to many local health and social care teams, and they are able to refer directly back into the specialist MS service as necessary.

In addition, MS team at Douglas Grant Rehabilitation Centre, Ayrshire, use a patient management system to ensure everyone not on DMDs is invited to an annual appointment. These consultations are carried out by a consultant MS physiotherapist, MS specialist occupational therapist and two MS nurses.

For more examples of care models designed to make sure people with progressive disease safety in contact with services, check out these case studies of innovative practice.

Amanda Barrell, Lemonade Studio.