After reading our recent review of the revised NICE Clinical Guideline (CG186) in the January issue of Way Ahead, our periodical for health professionals with an interest in MS, Paul Bull, a retired university academic, former chairman of the Colchester Branch of the MS Society and person with MS, was inspired to share his thoughts.
An opportunity for the MS community to help improve the care of people with MS?
At last, five years late, the National Institute for Health and Care Excellence (NICE) published their revised Guideline for the Management of multiple sclerosis in primary and secondary care1 in October 2014, which in essence presents an outline of the care a person with MS should expect to be able to receive from the UK National Health Service. Unfortunately, this document has not met with unanimous approval. While being praised for recommending the application of multidisciplinary teams, a named single point of contact and annual reviews by an MS expert for the treatment of MS, they have been criticised for undervaluing the role of MS specialist nurses, not bringing together all elements of MS care into a single document of best practice and for not recommending the drugs Fampridine and Sativex for the relief of immobility and spasticity respectively2. But, will these new guidelines be of any use? Will they help lead to improvement in the care of people with MS in the UK, such that they reach the acceptable standards set out in the NICE document? There are certainly some powerful reasons to be pessimistic as I will make clear. However, this Guideline also presents the MS community with an opportunity that should not be missed, an opportunity to mobilise into helping to improve the care of the people with MS.
Under resourced, lack of compliance and not legally binding
There are three main reasons to be pessimistic. First, in the UK neurology is a relatively under-resourced specialism with less than a third of the number of neurologists per head of population compared to the European average3 and at a time when demand for its services is increasing due to an ageing population, potential budgetary cutbacks and the continuing impact of a major internal reorganisation of the health service. Under such conditions, is it possible that services for MS will be able to compete successfully with calls for support from much larger disease groups, such as Alzheimer’s disease with seven times as many cases, and stroke and epilepsy each with almost three times as many people affected4.
Second, the experience of compliance with previous standards of care has been disappointing. For example, an audit of the 2003 Guideline5 by the Royal College of Physicians and the MS Trust6 via a self-selected survey on the MS Trust website indicated that for a large number of people with MS in the UK, the majority of the NICE Guideline for their care had not been implemented five years after its publication. Similar desultory results were discovered around the implementation of the 11 Quality Requirements of the National Service Framework (NSF) for Long-term Conditions7 published by the Department of Health that were supposed to put the individual at the heart of care. In a review of the progress of the implementation of the NSF, Thomas et al8 found that in the Primary Care Trusts investigated, not one had fully met a single NSF quality requirement. Indeed, in a recent review of services for people with neurological conditions9, the National Audit Office highlighted that no major improvements had taken place in their care since 2006. With such a pedigree of failure, what hope is there for this new Guideline in the improvement of care?
Third, it must be remembered that this guidance from NICE is not legally binding. Health professionals are expected to take the Guideline fully into account when exercising their clinical judgement, and it is the responsibility of local commissioners to implement the guidance. However, there are no sanctions if they do not. Furthermore, it must be very easy for the Guideline to be overlooked, given all the other competing demands on health professionals’ time and the many competing demands for health care funding. As a result, I suspect this NICE Guideline will not automatically come into effect through some magical administrative osmosis. If they are deemed worthwhile they must from now on be championed by the MS community. My hope is that this will be carried out at the strategic level of the four national health authorities by their respective MS organisations. But, what about at the local level, say at the scale of the MS Society Branch where important resource-allocation decisions are also being made that directly affect the care people with MS receive? Branch committee members are probably ideally placed to know what is going on in their ‘patch’. However, for them to get involved in lobbying for improvements in the health care of the people with MS in their area they need help in at least two important areas. First, they need a simple tool to be developed that will indicate the degree of local compliance with the new NICE guidance; a device that will provide objective evidence on the standard of care available to people with MS. This could, for example, be in the form of a list of tick-box questions. Second, they need advice on how best to lobby for their improvement in the new NHS. It is in these last two areas of support that I believe the MS charity sector has been weak in the past. Let it not happen again, so we stand a chance of making things better for people with MS.
Paul Bull, February 2015.
1. National Institute for Health and Care Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE clinical guideline 186. London: NICE; 2014.
2. MS Trust. Management of MS in primary and secondary care – NICE Clinical Guideline 186: an analysis of how it measures up. Way Ahead 2015; 19(1):11-15.
3. Lancet Neurology Editorial. UK neurological care: time to confront the crisis. Lancet Neurology 2011; 10(8): 671.
4. Neurological Alliance. Neuro Numbers: a brief overview of the numbers of people in the UK with a neurological condition. London: Neurological Alliance; 2003.
5. National Institute for Health and Clinical Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE clinical guideline 8. London: NICE; 2003.
6. Royal College of Physicians, MS Trust. National audit of services for people with MS 2008: summary report. London RCP; 2008.
7. Department of Health. The National Service Framework for Long-term Conditions. London: DH; 2005.
8. Thomas S, Davies A, Peel C. A mid-term review of the NSF for long-term neurological conditions. British Journal of Neuroscience Nursing 2010; 6(8): 366-70.
9. National Audit Office. Department of Health: services for people with neurological conditions. London: The Stationary Office; 2011.