Earlier this month NICE consulted on the scoping document for its general neurology guideline, following consultation workshops in December. The Cumbria Neurological Alliance’s view is that this should be a symptoms-based guideline, not excluding any particular neurological conditions. We now await the publication of the consultation response before engaging as stakeholders with the development of the guideline itself. Interested members can register as stakeholders via the NICE website to receive updates and engagement opportunities throughout the guideline development.
NHS England is currently scoping models of commissioning community care services for long-term neurological conditions. The project is being carried out in partnership with Strategic Clinical Networks, led by the Thames Valley SCN. The aim of the programme is to:
- Stimulate the delivery of person centred co-ordinated care for people with neurological conditions by encouraging the adoption of community based care model(s)
- Develop an evidence base to demonstrate and help commissioners understand the value and benefits of good community neurology.
- The objective for this year is to develop a commissioning toolkit to support local commissioning of new models of community-based care.
- The Neurological Alliance is supporting the workstream around communicating and publicising the project. There is a project page available on the Alliance’s website with further information, including contact details for workstream leads, available via http://www.neural.org.uk/nhs-england-community-project-for-neurology.
This briefing was developed by the Neurological Alliance, which represents over 80 organisations working on behalf of the millions of people living with a neurological condition, following NHS England’s decision to cut the role of National Clinical Director (NCD) for Adult Neurology from March 2016. It explains what the NCD has achieved since the role was established in 2013, and why NHS England’s decision constitutes a major setback for neurology services. If you would like more information or would like to support continued clinical leadership for neurology services,* please contact the Neurological Alliance at firstname.lastname@example.org
Background on the NCD role and its future
In 2012, the Neurological Alliance and its members welcomed the announcement by NHS England (then the NHS Commissioning Board) that it would create the post of NCD for Adult Neurology, in line with the recommendation made by the Public Accounts Committee (PAC) in its 2012 review of neurology services. The announcement was seen as a long-overdue signal that neurology services would begin to receive a comparable degree of focus and prioritisation as other condition areas. As the former NHS England CEO Sir David Nicholson told the PAC in 2012, neurology services (excluding dementia and stroke) have never been a priority for the NHS. Neurology is not mentioned in any key strategy documents, such as NHS England’s Mandate or the Five Year Forward View. It also has minimal representation in any of the incentive and accountability mechanisms, such as the NHS Outcomes Framework or the CCG Outcomes Indicator Set. Prior to the creation of the NCD role, there was no strategic or clinical leadership for neurology services within NHS England. As a result, neurology has largely been ignored by commissioners and has continued to lag behind other condition groups in service quality, availability and access.
A 2014 Freedom of Information audit sent to every CCG found extremely high levels of disengagement from neurology: only 15% of CCGs have assessed local costs relating to the provision of neurology services, while only 20% of CCGs respectively are aware of the number of people using neurological services within their area. Consequently they are in no position to improve quality and access to neurology services, and patients frequently wait months for a diagnosis or to access the right specialist care.
The latest NHS England GP patient survey that patients with long-term neurological problems report both some of the worst states of pain and some of the highest levels of anxiety or depression, with the lowest health outcome scores of any long-term conditions.
In the short time since Dr David Bateman’s appointment as NCD in the summer of 2013, he has begun to address these longstanding issues by spearheading national and regional improvement initiatives, and leading the development of publicly available data and intelligence sources for neurology at national level. Despite these achievements NHS England indicated to the PAC in December 2015 that the role may not be continued beyond March 2016. This decision was confirmed in January 2016.
To cut the role after less than three years, just as it was beginning to lead to real progress, would be a huge step back for neurology services. Furthermore, it would reinforce and underline the perception that neurology is simply not a priority for NHS England, leading to even greater disengagement by local commissioners and other key decision-makers.
What has the NCD achieved? Since his appointment in 2013, Dr Bateman has worked to champion the cause of better care for the millions of people with neurological conditions in England. He has played a vital role in the development of the first national compendium of neurology data, as well as the Neurology Intelligence Network (NIN), the Neurosciences Clinical Reference Group (CRG) and the Strategic Clinical Networks (SCNs) for neurology, as well as NHS England’s current project on community neurology services. He has been a key source of clinical expertise and advice for a wide range of initiatives, as summarised below: Improving data and intelligence: The NCD has been instrumental in the development of the first nationally available data for neurology, through the Health and Social Care Information Centre’s compendium of neurology data and the analysis produced by the Public Health England’s (PHE’s) NIN, both launched in 2014.
As Chair of the NIN’s Expert Reference Group, he has helped to guide the outputs and analytical priorities of the NIN in order to make them as useful as possible to commissioners, providers, clinicians and patients. His expertise enabled the development of a category of neurology activity codes, which then allowed the development of the first ever national dataset for neurology services. It is now possible for the first time to compare local CCGs using key outcome and activity measures for neurology services.
This has revealed major local and regional variation which still needs to be addressed. Although there is much more progress needed to improve neurology data, the NCD’s leadership has enabled much stronger scrutiny of NHS neurology services than was possible previously by patients and their representatives. Coordinating improvement initiatives: The NCD played a key role ensuring that each of NHS England’s SCNs had a clear and defined neurology work programme supported with clinical neurological input. In partnership with the SCNs he has developed four key national initiatives, including developing neurology improvement programme standards to audit provision of local CCGs’ care for acute neurological emergencies and scheduled care; developing plans for improving management of seizures and acute headache in the local emergency departments; modernising the scheduled care referral process for headache; and developing plans for a community care service for patients with long-term neurological conditions (in conjunction with an NHS England project to develop a commissioning toolkit for CCGs for this purpose). The NCD has played an important role in leading, advising and coordinating disparate regional initiatives aimed at improving the quality of services received by patients on the ground, both in and out of hospital.
As Co-Chair of NHS England’s Neurosciences CRG, Dr Bateman has helped develop new specialised commissioning policies and has pushed for clarification of arrangements for commissioning specialised neurology services. The ongoing confusion over the boundary between specialised and non-specialised neurology services has contributed to CCG disengagement and contributed to a decline in local services. Dr Bateman has promoted and supported local, community based and nursing-focused service models, making the bridge to CCGs and GPs with an interest in neurology. He has attempted to tackle the loss of the Quality and Outcomes Framework epilepsy indicator by working with PHE to see if details about seizure freedom rates can be drawn down from the system. He has also suggested new neurology indicators, drawn from NIN data, for potential inclusion in the NHS Outcomes Framework and the Atlas of Variation, which would help to address neurology’s under-representation in NHS incentive and accountability frameworks. Patient voice: Throughout his term as NCD, Dr Bateman has worked closely with patient representative organisations in the voluntary sector. He has always been available to provide his advice and expertise and has personally attended meetings and forums across the country. He has provided an essential link between NHS England and the neurology patient community which previously was entirely lacking.
Why is it important to retain the NCD beyond March 2016?
Neurology services still lag well behind other condition areas in terms of service quality, access and outcomes. Despite accounting for a large amount of hospital activity and NHS budget, neurology services are not prioritised for improvement. NHS programme budget spending on neurology services was £3 billion in 2013/14, 3.1% of the entire programme budget for England, with an additional £1.1 billion of spend on specialised neuroscience services and neurosurgery (around 8% of the specialised commissioning budget). Neurology also accounts for a significant amount of hospital activity, with 3,083,351 hospital admissions relating to neurology in 2013/14, and 827,242 emergency admissions. 5,203,889 hospital bed days were needed for people with a neurological condition in 2013/14.
There is a major postcode lottery when accessing services, with some parts of the country offering no access at all to consultant neurologists, specialist nurses, and other forms of specialist neurological support. 45 local CCG areas (22%) offer no local consultant neurology services whatsoever, meaning people who live in those areas will have to travel further away to be seen by a specialist and receive a diagnosis. Local rates of new consultant adult neurology outpatient appointments vary hugely by CCG area, from 2,531 per 100,000 resident population in Camden to as low as 165 per 100,000 population in Doncaster.
As a result, access to diagnosis and treatment is often poor. A recent survey of almost 7,000 patients found that 39.8% of respondents waited more than 12 months from when they first noticed their symptoms to see a neurological specialist, while 58.1% of respondents have experienced problems in accessing the services or treatment that they need.
The UK employs considerably fewer neurologists than comparable European nations; for every neurologist in the UK, Germany and Spain have six and Italy has eight.vii In July 2015, the National Audit Office found that “considerable further work is needed” to bring neurology services up to required standards.
Prior to Dr Bateman’s appointment, no-one in NHS England took responsibility for addressing these issues or focused on neurology as an area requiring improvement. Cutting the NCD role would endanger all the progress made in the past two and a half years and derail the improvement initiatives that Dr Bateman has led and coordinated in that time. Moreover, it would reinforce the view of patients that NHS England is simply not willing to focus on neurology as an area requiring improvement, despite the fact that many neurology patients currently receive an unacceptably low standard of care. The savings released by cutting one part-time advisory role will be dwarfed by the costs of ongoing inefficiency and poor outcomes delivered by neurology services.
We urge NHS England to reverse this shortsighted decision and commit to maintaining the role of neurology NCD.
Briefing prepared by the Neurological Alliance, January 2016. Please see www.neural.org.uk for more information. Contact: Alex Massey, available on email@example.com or 020 7963 3994
* This briefing does not address dementia and stroke services which are categorised separately within the NHS
Claire Braid is the Network Delivery Lead for Northern England Strategic Clinical Networks, part of NHS England. Claire has been a great support in setting up our Alliance and has been to a number of meetings.
Things have started to progress with the neuro-rehab and self-management workstream, as one of the main priorities for the Neurological Conditions Network. This is a very large piece of work, so it has been agreed with our Network Clinical Leads, Dr Nicky Chater and Kim Westwood (Neuro Conditions Lead and AHP Rehab Lead respectively), to focus on the self-management aspect of this.
It was agreed a good starting point was to develop some standards for self-management that are regionally agreed, and are relevant to a wide range of people with neurological conditions. For the purpose of this piece of work, ‘self-management’ will be a broad term looking at all aspects of a person’s life, and not just structured ‘self-management’ programmes, although this is likely to form a part of it. For example, the standards should encompass things like access to more mainstream community resources such as leisure services, and maintaining / returning to work.
We are aware there are many standards already out there for other conditions, both nationally and locally, as well as documents like NICE guidance, so these would form the basis of the regional neuro standards.
The Tees Neuro Forum volunteered to start to draft up standards for neuro. We offered to set up a Forum for North Cumbria under the umbrella of the Cumbria Neurological Alliance. One of our committee members Dr Vincent Foxworthy has agreed to set this up. This will promote a truly region-wide approach to this piece of work, provide an opportunity to benchmark services and have a regional consensus on what good self-management should look like.