Services to people with neurological conditions: progress review Contents

1Neurological Services

1.On the basis of a report by the Comptroller and Auditor General, we took evidence from the Department of Health (the Department) and NHS England, including the National Clinical Director for Adult Neurology, on services for people with neurological conditions.1 We also took evidence from the Neurological Alliance, from Dr Geraint Fuller, former president of the Association of British Neurologists, and from Dr Paul Morrish, a consultant neurologist and adviser to the Neurology Intelligence Network.

2.Neurological conditions result from damage to the brain, spinal column or peripheral nerves. They include conditions such as epilepsy, which are intermittent and unpredictable, and motor neurone disease and Parkinson’s disease, which are progressive. Some neurological conditions are life-threatening, with many severely affecting people’s quality of life and causing lifelong disability. In 2014, the Neurological Alliance estimated that there are 4.7 million neurological cases in England (excluding migraine, headache, dementia and stroke).2

3.The Department is ultimately responsible for securing value for money from spending on neurological services. The Department sets objectives for NHS England through an annual mandate and holds it to account for the outcomes the NHS achieves. In turn, NHS England supports and holds to account the 209 clinical commissioning groups.3

4.Spending on neurological health services has increased at a faster rate than overall NHS spending. The most recent data indicate that, in 2012–13, £3.3 billion was spent on neurological services, accounting for 3.5% of overall NHS spending–up from 3.1% in 2010–11. Between 2010–11 and 2013–14, hospital activity involving patients with neurological conditions increased, although growth in both inpatient admissions and outpatient appointments slowed compared with the previous three years. In 2013–14, there were 464,000 neurological inpatient admissions and 1.7 million neurological outpatient appointments.4

5.There are no data on spending on social care for people with neurological conditions, as adult social services are defined by disability and need rather than condition. People with neurological conditions generally fall within the category of ‘people with a physical disability’ and social care spending on adults with a physical disability has fallen significantly. Spending decreased by £1.6 billion (16%) in real terms from £9.8 billion in 2009–10 to £8.2 billion in 2013–14. The number of adults with a physical disability receiving social care services also fell significantly, from 1.2 million in 2009–10 to 0.8 million in 2013–14.5

Variation in services and outcomes

6.The Neurological Alliance told us that its survey on patient experience had indicated shortcomings in neurological services. The diagnosis of neurological conditions took too long–people often had four or five GP appointments before they were referred to a neurologist. Services in hospitals varied across the country and there were not enough neurologists and assessing teams to help with getting quick diagnoses. Dr Fuller described neurological services as a ‘Cinderella’ area and said that patients with neurological conditions had been left out compared with those with cancer or heart disease. He thought that the NHS found neurological conditions difficult to deal with because of the range of illnesses involved. Dr Morrish said that surveys indicated that neurological conditions were an area that GPs found particularly difficult.6

7.In the community, health and social care services are often poorly coordinated. In a survey by the Neurological Alliance, published in January 2015, 42% of people said that the different people treating them worked well together only some of the time or never.7 The previous Committee of Public Accounts recommended in 2012 that there should be joint health and social care commissioning of neurological services, but the National Audit Office reported in July 2015 that there were only occasional examples of this.8 The Neurological Alliance highlighted that poorly coordinated care could often result in people going back into hospital, which cost the NHS money. Emergency admissions are an indicator of poor quality health or social care services, or both, or poorly integrated health and social care.9 The National Clinical Director said that emergency admissions for epilepsy alone cost the NHS £70 million per year.10

8.Dr Morrish said that there were huge differences in services across the country with huge impacts on people with neurological conditions. For example, the proportion of adults receiving treatment for epilepsy who remained seizure-free for 12 months varied significantly across the country. In 2013–14, performance ranged from 87% in South-West Lincolnshire to 47% in Hull and North Manchester. Dr Morrish said that if people remained seizure-free, they were more likely to have a job and a relationship. In addition, they were less likely to die from their epilepsy. He noted that the chances of dying from epilepsy varied by about 50% across the country.11

9.There was general agreement that good data, highlighting variations in performance at a local level, was a key part of improving services and outcomes.12 However, progress in this area has been mixed. Dr Morrish told us that epilepsy was one area where there were good data. The Neurology Intelligence Network has collected clinical commissioning group-level data on the epilepsy care pathway and on emergency admissions across a range of neurological conditions.13 However, the previous Committee’s recommendation on including specific neurological indicators in the NHS and adult social care outcomes frameworks has not been implemented.14 In addition, both Dr Fuller and Dr Morrish highlighted that the indicator on adults with epilepsy remaining seizure-free for 12 months had been dropped from the GP quality and outcomes framework, despite the fact that this was a useful measure of how well epilepsy was being managed.15

10.NHS England told us that in April 2016 it would be making more information available on the variations in neurological services and outcomes by issuing ‘commissioning for value’ data packs to clinical commissioning groups. These packs would include data on outcomes, costs and other indicators across a range of neurological conditions. For example, each clinical commissioning groups would see its outpatient activity and costs compared with the best and worst in the country and against its peers.16 NHS England explained that this information would be used as part of the NHS Right Care programme which aims to identify where variation exists with a view to improving local commissioning in areas that are under-performing. The National Clinical Director emphasised the importance of the commissioning for value data packs and said that clinical commissioning groups held the key to improving services and reducing variation.17

Personal care plans

11.In 2012, the previous Committee recommended that everyone with a neurological condition should be offered a personal care plan. The Department agreed with this recommendation and included in its mandate to NHS England an objective that everyone with a long-term condition, including a neurological condition, should be offered a personalised care plan by 2015.18

12.The Neurological Alliance highlighted that people lived in the community with their neurological conditions for a long time after being diagnosed and leaving hospital. It stressed that care plans, together with care coordinators, were essential for coordinating people’s care in the community. Its own research, and that of its members, indicated that a lack of coordinated care could result in individuals being readmitted to hospital rather than being cared for in the community, which resulted in the NHS incurring additional costs.19

13.The latest data from the GP Patient Survey, published in July 2015, show that just 12% of people with a neurological condition have a written care plan.20 And a survey by the Neurological Alliance, published in January 2015, found that only 20% of people with a neurological condition had been offered a care plan.21 The Neurological Alliance told us that there were no incentives for clinical commissioning groups to ensure that people had care plans, and there were not enough nurses and care coordinators in the community to help implement care plans.22

14.The Department argued that there might be an issue with how performance in this area was being measured. It said that the question in the GP Patient Survey might not produce an accurate picture as patients might not be aware when they did have a care plan. The Department said that it was looking at what would be a better range of questions in the GP Patient Survey.23

Access to neurologists

15.Dr Fuller told us that there are currently about 650 full-time equivalent consultant neurologists working in the NHS in England (excluding consultants working in stroke services).24 Dr Morrish said that reports had concluded that there were not enough neurologists in this country and that the existing neurologists were not well distributed. Dr Fuller explained that the lack of neurologists was partly due to the challenging nature of the specialty resulting in many medical students avoiding the area. The National Clinical Director stated that data from the Association of British Neurologists indicated that between 30% and 50% of new consultant neurologist posts remained unfilled due to the lack of specialist neurology trainees.25

16.Dr Fuller advocated a 50% increase in the number of consultant neurologists, bringing the total to around 1,000 full-time equivalents.26 NHS England told us that over the last decade the number of neurologists in the NHS had grown by around 60% in total, an increase of between 4% and 5% per year. It stated that this rate of growth was unlikely to increase over the next four or five years.27

17.Dr Fuller said that, for new patients, waiting times for outpatient appointments with a neurologist were generally reasonable. However, for patients with an established neurological condition, access to repeat outpatient appointments was less good as hospitals focused on seeing new patients. Dr Morrish highlighted that there was a 13-fold difference across the country in the availability of neurologists for outpatient appointments.28

18.Dr Fuller also explained that, for patients who are admitted to hospital with an acute neurological problem, access to services varied significantly across the country. In areas where there were specialist centres, with neurologists permanently based on site, patients could be seen by a neurologist on four or five days in a week. However, in district general hospitals where the neurologists were visiting, patients might be able to see a neurologist only on one or two days a week. NHS England emphasised that there needed to be a balanced approach in distributing the available neurologists to provide more outpatient appointments in local hospitals, but also to enhance inpatient services in specialist centres.29

19.NHS England highlighted the potential to reduce the demands on neurologists, and thus improve access, by re-designing services and care pathways. It cited the example of rapid-access first-seizure clinics for epilepsy, which allowed people to access the right care early on, reducing the need for ongoing follow-up support.30 The National Clinical Director also referred to other work to re-design care pathways to avoid patients being admitted to hospital with acute headaches and epileptic seizures.31

20.The Neurological Alliance and Dr Fuller highlighted that other clinical staff, such as specialist nurses, could also reduce the demands on neurologists. They explained that, where specialist nurses had been used for multiple sclerosis, Parkinson’s disease, epilepsy and motor neurone disease, they had made a dramatic difference in, for example, preventing admissions to hospital. However, Dr Fuller said that the provision of specialist nurses was patchy.32 NHS England told us it was working to integrate specialist nurses into community teams.33 The National Clinical Director said that the NHS needed to work smartly by using other staff to do some of the things that neurologists usually did.34

20 NHS England, GP Patient Survey, July 2015

© Parliamentary copyright 2015

Prepared 18 February 2016