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Three years ago, we launched the results of the first ‘My MS My Needs survey’ which uncovered a lottery of MS treatment care and support across the UK. So much has changed since then.  More disease modifying therapies (DMTs) for relapsing forms of MS are available than ever before. Influential bodies like the National Institute for Health and Care Excellence (NICE) and the Association of British Neurologists (ABN) have updated their guidance on how to best treat and manage MS. Crucially, we now know that early treatment with a DMT improves long-term outcomes for people with MS.

This year we conducted the second survey to see if this lottery of treatment and care remains. More than 11,000 people with MS responded, with the results published in our new report ‘MS treatment in England: is access still a lottery?’. As the largest collection of patient-reported data for MS in the UK, it provides an unparalleled insight into the treatment, care and support of people with MS.

Access to treatment

The MS Society’s number one organisational goal is that people with MS have access to effective treatments. Access to DMTs is one indicator of that – DMTs have been proven to be cost effective, and can stop relapses and slow progression.  With that in mind, it is heartening to see that access to DMTs among those who could benefit has increased from 40% in 2013 to 56% in 2016. As more treatments become available, we need to maintain and continue to improve access to these vital treatments.

We know, however, that this isn’t the entire picture. People diagnosed recently are more likely to be taking a DMT than those who were diagnosed some years ago. Those who have better access to neurologists and MS nurses, and who feel that their information needs have been met, are more likely to be on a treatment than those who have not. This paints a complex, challenging picture when considered in light of the financial constraints of the NHS – in an age of finite resource, in terms of both professionals themselves and finances, we must work together to ensure every person living with MS has access to the treatment and care they need to best manage their condition.

Access to the right support

NICE recommend that people with MS have a single point of contact who coordinates their health and care within a wider multidisciplinary team. People with MS are most likely to feel their MS specialist nurse carries out this role (40%), with GPs coming in second (20%) and families/carers in third (15%). Worryingly, 5% of people said no-one performed this role.

Without this support, people with MS may miss out on the right treatment and support. For example, as many as one in ten with relapsing MS haven’t seen an MS nurse or neurologist for over a year. Among this group, just 12% are taking a DMT, compared to 73% of those who saw both specialists within the last year.

Personalisation of care and support is a key focus for Richmond Group members, and has been on the national policy agenda for some years now. Despite this, only 12% of people with MS have been offered a care plan or care plan review, and 17% believe their health and care professionals do not work well together at all. Many of the challenges and pressures facing MS services will be familiar across other long-term conditions – fragmented care, resource pressures, inconsistent access to emotional support or services to help remain active, the need to better involve patients in their care.

Is access still a lottery?

Unfortunately the answer is yes, and through this research we are able to better understand the character of it. The research also reconfirms what helps to address the lottery of care – access to the right information, coordinated care and access to specialists remain an integral part of excellent MS care. The coming years will see further change for the NHS and MS services themselves, and this research is a valuable resource to help us work through these changes.

We hope that more DMTs will become available on the NHS, with the first DMT for progressive forms of MS currently being considered by NICE. Clinical Commissioning Groups (CCGs) may be required to take on more responsibility for a range of specialised services, including DMTs, offering an opportunity to build more joined up patient pathways. Our report makes nine recommendations for decision-makers at a national and local level. As these changes take hold, ensuring equitable access to quality services must remain a priority. If we want England to be a place where people with MS are in control of their health and care, and live full, independent lives, we urge decision-makers to act.

Dan Rattigan

Senior Policy Officer, MS Society

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