Written evidence from The Neurological Alliance

We would like to thank you for chairing the hearings on neurology services held by the Public Accounts Committee this week. We were delighted that neurology services received some much-needed scrutiny and felt that the hearings were revealing and informative.

We would like to briefly respond to the view expressed by NHS England and Department of Health colleagues at the hearing, that the issues affecting neurology services can be addressed through generic measures. This view was most evident in responses to questions on data, which focused on generic initiatives planned for the future, and in Sir Bruce Keogh’s acknowledgement that NHS England is not currently planning to renew the role of National Clinical Director (NCD) for neurological conditions beyond March of next year.

In our view, the evidence is clear that neurological services require specific focus in order to secure improvement. One example is the current system of NHS levers and incentives such as the clinical commissioning group outcomes framework, in which neurology is represented almost entirely through the generic ‘long-term conditions’ umbrella indicators rather than neurology-specific indicators. As shown by the freedom of information audit we conducted last year, and which you quoted at the hearings, this has failed to prompt clinical commissioners to actively engage with neurology services to secure improvement in patient outcomes.

Similarly, neurology suffers uniquely from a shortage of data which impedes scrutiny of commissioning practices, patient experience and outcomes at both local and national levels. An initiative such as care.data, when it eventually arrives, will not address the fact that there is currently only very limited data to compare CCG performance or outcomes across neurology services. One current solution that already exists is the Neurology Intelligence Network (NIN) which has a dedicated data profile available for epilepsy, for example. However, without a clear national focus on neurology in the short term to make more data available through the NIN, it will continue to fall behind other condition areas with regard to the availability of data and intelligence.

Equally, we believe that the role of NCD for neurology has been crucial in leading and coordinating improvement initiatives across the country. Dr Bateman’s work has shown the value of a respected clinical expert with a clear remit to focus specifically on neurological conditions at the national level. The degree of support among patient groups and clinicians for Dr Bateman’s role was apparent at the hearing, and we hope the Committee will feel able to recommend that it be maintained in future.

Finally, we noted that Sir Bruce indicated that Dr Bateman’s role could be taken on collectively by the strategic clinical networks (SCNs). Quite apart from the loss of clarity and accountability that would result from splitting the role across multiple organisations, it should be noted that the SCNs have already begun to downgrade their focus on neurology as they perceive it as a low-priority area for NHS England, and are grappling with major budget cuts. At least one SCN has already cut the neurology component of its work. There are real question marks over SCNs’ capacity to take on the strategic and clinical leadership of neurology services. Furthermore, the SCNs rely on data from the NIN, which was originally set up for that purpose. Consequently if the work of the NIN is not maintained, SCNs will not have the information and intelligence required to perform their role effectively.

It is therefore our continuing belief that NHS England must commit long term support for a NCD for neurology and the NIN (in partnership with Public Health England), and we hope that the Committee will feel able to make these recommendations. It is important to recall that these initiatives have only been in existence for around two years, and so their potential is only beginning to be realised. It would be an appalling waste of the investment and work that has taken place over the past two years to abandon these initiatives just as they are beginning to have a major influence on the value and effectiveness of neurology services.

For these reasons, we hope that the Committee will send a clear message about the value of specific focus on neurology, and particularly the importance of maintaining and building on the initiatives mentioned above. We look forward to reading the Committee’s recommendations when available.

Arlene Wilkie,                                 

Chief Executive,

The Neurological Alliance

Dr Geraint Fuller,

Former President,

Association of British Neurologists                                               

Dr Paul Morrish,

Consultant Neurologist,

Adviser,

Intelligence Network

17 December 2015

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The Neurological Alliance is a charity registered by the Charity Commission for England and Wales (registration number 1039034) and a company limited by guarantee registered in England (registration number 2939840).  Registered office is Dana Centre, c/o Parkinson’s UK, 215 Vauxhall Bridge Road, London SW1V 1EJ