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How can we design services that work better for people with advanced MS?

Image showing different types of MS health services

Back in April the MS Trust published a report that showed that many people with advanced MS feel like they’re missing out on access to NHS services. But how do we make MS care fair? As part of our MS Forward View project, we recently convened a meeting of MS specialists, carers and people with MS to look at different models of MS care and work out what are the most important factors to consider when designing services

Should people living with MS remain under the care of the same MS team as their needs change? Should neurologists always lead this care, or could other health professionals play a bigger role? And does one size fit all in terms of designing an MS service?

These were just some of the pressing questions we asked of a group we convened in May including MS specialists, carers and people living with MS, and of our MS Forward View online lay forum, who provided vital feedback for the workshop. We started off by discussing what good care for people with advanced MS looks like. With these factors in mind we looked at the main barriers preventing MS teams delivering this care.

What does good care look like for someone with advanced MS?

  • A service that helps you to remain active and independent for as a long as possible
  • Easy access to a multidisciplinary team of healthcare professionals when you need them, who can visit you at home if necessary
  • A single point of contact for this team
  • Good communication and co-ordination between members of this team
  • A personalised, integrated plan for your care which adapts to meet your changing needs

What are the barriers to MS teams delivering this care?

  • Lack of capacity within services – not enough MS specialists but also lack of particular services
  • Not enough space for staff/services/clinics
  • Some health professionals sometimes lack understanding of the specific needs of people with advanced MS
  • Inflexible systems can place restrictions on home visits
  • Communication between different teams is often limited or hampered by incompatible IT systems
  • Service hours and locations may not suit needs of people with advanced MS

There are currently several different models for MS services in the UK. We asked whether any of them was particularly suited to the needs of people with advanced MS.

Hospital-based neurologist, MS nurses and team

images of person with ms with neurologistAdvantages

Having key health professionals all in one location can mean you receive well co-ordinated care from a team working closely together.

Disadvantages

Hospitals can be difficult to get to - especially for people with limited mobility. Because they are so focused on MS drug treatments, there is a chance that people who aren’t eligible for drugs might be discharged.

What needs to be in place for this model to work?

If services are all in one place, they need to be available at the same time, as a one-stop shop, so people don’t have to make multiple appointments. Hospital staff need to have a good understanding of community care so that they can arrange home visits for people unable to travel in.

Community-based nurses and therapists

image of community ms teamAdvantages

Because they can visit you at home or in your community and provide continuing care from the moment of diagnosis, community-based health professionals can be very focused on the needs of you and your carers.

Disadvantages

Who do you contact in an emergency - your hospital or your nurse? Your nurse may not be well connected with the hospital team so you might need to repeat yourself. Community-based health professionals often have to spend a lot of time traveling between appointments.

What needs to be in place for this model to work?

Community-based professionals need to ensure they have timely access to neurologists and neurorehab therapists, and have good communication with specialist and generalist services so that people with MS are receiving well co-ordinated care.

Neurorehab team

person with ms with neuro-rehab professionalAdvantages

A team of specialist neuropractitioners can provide continuing, proactive support with your MS symptoms, providing care at rehab centres or in your home.

Disadvantages

Neurorehab teams sometimes don’t have strong links with local neurologists and don’t manage MS drugs.

What needs to be in place for this model to work?

Neurorehab teams work best with practitioners with a strong background in neurological conditions. To provide effective holistic care they need to have strong links to providers of palliative care.

Can one size fit all?

images of ms team with a person with msIt’s clear that there is no one best model of an MS service. But we can recommend elements of a good service which teams should seek to include within their services which should be set up to meet local needs and fit with available resources.

A one-stop shop, with a multidisciplinary team of MS specialists is desirable - whether that be in a well-connected hospital or in a community setting. But we urgently need to address the way that the focus on MS DMDs is overwhelming the ability of services to provide holistic care and symptom management.

Crucially, MS services need to get better at communicating what they offer to people living with MS, and also demonstrating their value to NHS managers and commissioners.

How do we change things for the better?

It’s crucial that people with MS and MS health professionals are able to communicate what they need to shape the services of the future.

We asked our group to imagine they had an appointment with a commissioner/health board manager who wants to understand services for people with advanced MS. What are the most important things that they should expect from the services they are buying for people with advanced MS?

These were the top 5 statements the group agreed on:

  1. The service must provide holistic care which reduces unplanned hospital admissions and visits to A&E by meeting the changing needs of people with advanced MS.
  2. Care must be delivered by a multidisciplinary team with specialist skills and knowledge.
  3. The service should be responsive to its users and coordinated so it provides the care people need when, where and how they need it.
  4. The service should enable people with MS to stay healthy and independent for as long as possible.
  5. The service should be integrated across health and social services.

We’re now going to feed these conclusions into our MS Forward View report which we’ll publish this autumn. We hope to achieve real positive changes for people with advanced MS, including:

  • better information about what MS services are available for you
  • clearer expectations about what these services can do for you
  • and ultimately, more efficient, effective and accessible care for everyone with MS

We know that, currently, some people aren’t getting the care they deserve. We are determined to work with the NHS to create services that leave no one behind. Look out for some major announcements this autumn about the next step in our work to make MS care fair.