This World MS Day, I’ve been reflecting on how far we have come in treating and managing multiple sclerosis (MS). I’ve been working in MS for four years, and even in that short time frame the treatment options available have expanded dramatically. The pipeline for treatments, particularly for treating progressive forms of MS, is particularly exciting. But there’s still some way to go in making sure treatment, care and support responds to the changing needs of people with MS.
MS affects more than 100,000 people in the UK, and every one of them experiences the condition differently. Symptoms change over time, requiring support from all areas of health and care.
Primary and community care, and particularly MS nurses, have a critical role in supporting people with MS.
Timely referral or diagnosis for people with suspected MS is hugely important, yet we know this is not always achieved. In a recent survey[1] of people with MS, 37% of respondents waited six months or more to be diagnosed with the condition, and 17% reported waiting more than 12 months to have a consultation with a neurological specialist.
People with MS often speak of the ‘limbo land’ they experience, or ‘feeling in the dark’ whilst waiting for a confirmed diagnosis. If MS is suspected, primary care clinicians should communicate this sensitively but in a timely fashion – this allows people to prepare themselves as much as possible and get the information and support they need ahead of their consultation with a specialist neurologist.
We know that specialist centres are feeling the strain of increasing treatments options for relapsing forms of MS, and are being asked to do more with less financial resource. To ease pressures, the right care in the community, if done well, allows people with MS to receive more personalised, flexible services closer to home. It can also help to optimise services by freeing up resources.
Overwhelmingly however, people with MS see their MS nurse in a specialist clinic setting, with just 13% of people with MS seeing their nurse in a community setting. With NHS England and others attempting to move more services into the community, there is much for those who commission and provide services for people with MS to consider. Responsibility for MS services is split between national and local commissioners – there is a need to collaborate to ensure people receive the care they need in a joined-up manner.
Coordinated care helps to ensure that people with MS can access the full suite of support they require to best manage their condition. Yet the hallmarks of coordinated care are lacking. Our research[2] shows that the majority of people with MS report not being offered a health care plan or health care plan review in the past 12 months (83%). A good care plan should ensure treatment, care and support is geared toward meeting the specific goals of each person with MS, as well as improve continuity of care across different care settings.
We also asked people with MS whether they felt the professionals who helped plan their care worked well together – 17% responded ‘not at all’.
Worringly, 5% of people with MS feel that no one currently coordinates their care, and 14% said it was their carer or a member of the family – the degree to which that carer or family member has support from NHS professionals is unknown.
So this World MS Day, let’s celebrate how far we have come in treating and managing MS, but look to the future and work on areas we might improve. Let’s work together to build investment in community care, upskill primary care clinicians to enable timely diagnosis, and agree how we can ensure effective care planning and coordination. This way, we can all do our part to ensure people with MS are able to access the right treatment, care and support, at the right time, no matter where they live.
References
[1] Neurological Alliance, 2017, Falling Short – How has neurology patient experience changed since 2014? http://neural.org.uk/updates/278-New-Neurological-Alliance-patient-experience-report-2017 (Accessed May 2017)
[2] Redfern-Tofts, D., Wallace, L., and McDougal, A,. (2016) My MS My Needs 2016: access to treatment and health care technical report https://www.mssociety.org.uk/sites/default/files/MMMN%202016%20Technical%20report.pdf (Accessed May 2017)
