A NICE new Quality Standard for care
For the first time, they will allow both Clinical Commissioning Groups (CCGs) and healthcare professionals to clearly see what level of service they are expected to provide for people living with MS.
- The statements are: Adults with MS are given support at the time of diagnosis to understand the condition, its progression and the ways it can be managed, by the consultant neurologist making the diagnosis.
- Adults with MS are offered a face‑to‑face follow-up appointment with a healthcare professional with expertise in MS, to take place within six weeks of diagnosis.
- Adults with MS have a single point of contact who co-ordinates access to care from a multidisciplinary team with expertise in MS.
- Adults with MS who have problems with mobility or fatigue are offered support to remain physically active.
- Adults with MS who have a relapse that would benefit from treatment are offered treatment as soon as possible and within 14 days of the onset of symptoms.
- Adults with MS are offered a comprehensive review at least once a year by healthcare professionals with expertise in MS.
Moving in the right direction
People affected by MS have told us these standards are not always met currently. We hope the publication of this Standard helps with our efforts to ensure better quality and more consistent MS care.
We contributed our thoughts on how the Standard could best meet the needs of people with MS throughout its development. We are pleased to see our suggestion to include a statement on offering support to remain physically active has been included.
We know the Standard is not exhaustive and there is much more people with MS need from the health service. We’ll be working closely with the Association of British Neurologists and the MS Trust to further develop it.
Still more to do
Now the statements have been published, it is vitally important they are implemented by the NHS and progress against them monitored. Detailed metrics must be developed, and data collected, so we can clearly see whether they are having a meaningful impact on the quality of care.
Unfortunately the quality of care provided to people with MS is variable across the UK. Without better accountability for neurological conditions built into NHS improvement structures such as the recently revised NHS Mandate, neurological conditions may continue to be under-represented.
The right treatment at the right time
Prompt and appropriate referral to a neurologist for diagnosis is vital, yet 25% of people with MS had to see a GP more than five times before they were referred. A timely, accurate diagnosis allows for earlier conversations with a neurologist about the treatment options available for all forms of MS.
There is now scientific consensus that early treatment with a disease modifying therapy (DMT) improves outcomes for people with relapsing forms of MS. Earlier referral is an important part in realising those better outcomes. Currently, 60% of people with relapsing forms of MS do not take a DMT and the UK is ranked 25 of 27 European countries on the proportion using DMTs.
We are pleased the Standard sets out the need for a single point of contact to co-ordinate care within a multidisciplinary team for everybody with MS. It is important people living with MS have access to MS professionals within the team, including MS nurses, to ensure the care they receive is responsive to their needs.
We will be working to ensure each statement is fully implemented by the NHS. Through our Treat Me Right campaign we have been calling for the right treatment at the right time for everyone with MS and the statements have the potential to be a vital tool. Given there are a number of areas important to MS care still outside of this Quality Standard, we will continue to push to ensure everyone living with MS has access to care and support that is responsive to their needs.