Question for Short Debate
My Lords, I am very pleased to have the opportunity of debating this matter and thank all noble Lords who are taking part. I declare an interest as co-chair of the All-Party Parliamentary Group on Parkinson’s. Quality neurological services are vital to help people manage Parkinson’s. It is a complex and debilitating condition for which there is no cure. These services are also vital to people with motor neurone disease, epilepsy, migraine, multiple sclerosis and myriad disorders of the brain, spinal cord and nervous system that affect more than 12 million people in England.
I want to focus on the opportunities to improve services, in particular, those initiatives, often proposed or driven by clinicians and expert organisations, which now rely on the political will of Ministers, the Department of Health and NHS England if they are to succeed.
A long-running, major issue for neurology in England is the lack of leadership. A significant amount of NHS and social care money is inevitably spent on neurology. Between 2003 and 2013, there was an increase in funding of 200%, yet there was no accompanying improvement in services. A national clinical director of adult neurology post was created and filled in 2013 following a recommendation in the Public Accounts Committee’s 2012 report. Although the postholder was contracted for just two days a week, he is widely acknowledged to have made significant progress by encouraging better co-ordinated working and mapping service provision. None the less, the PAC heard in evidence for its follow-up report four years later that the NCD for neurology role was likely to end in March 2016. There was no transparency around the decision. No consultation was conducted, and no impact assessment was made available. I tabled Questions on this issue and was given assurances in Written Answers that strategic clinical networks for neurology would be able to do some of the work. Soon after receiving those assurances, it was announced that the funding for those networks was also to be withdrawn.
In the period of confusion and uncertainty that followed and in the absence of any other proposals, it was the Neurological Alliance—a collective voice for more than 80 organisations—that took the initiative and suggested an alternative structure called the National Neurological Advisory Group. This group comprises a range of stakeholders giving their time and expertise voluntarily. It includes the Neurological Alliance, the Association of British Neurologists and the Society of British Neurological Surgeons. NHS England provides the secretariat. NNAG is already working on a strategy for improving neurology services which is to be published shortly. With the NCD of neurology role gone, it is essential that this new group be supported by the Department of Health and NHS England, over and above the secretariat being provided.
Commissioners hold the key to patient care. During the 2012 Lords debate about neurology services, the Government voiced real optimism about the new opportunities provided for patient care by the new commissioning system. In reality, commissioners are confused by the split of responsibility between specialised commissioning, which is the responsibility of NHS England, and other treatments and services, which are the responsibility of the clinical commissioning groups.
This confusion is heightened in the context of commissioning neurological services, as contradictory guidance is given in the materials meant to help decipher this responsibility. The Neurological Alliance has identified situations where neither NHS England nor the local CCG has accepted responsibility for a neurology service, leaving local people without treatment and support. A survey of CCGs by the Neurological Alliance, to which 90% responded, highlights the seriousness of the problem: 85% had not assessed local costs relating to the provision of neurological services; 80% had not assessed the prevalence of neurological conditions in their area; and 80% had not assessed the number of people using neurology services locally. It would seem that the majority of local health commissioners lack a comprehensive understanding of the health needs of an average of 59,000 people in their local populations with neurological conditions. As a result, they simply do not know what neurology services should be commissioned to improve patient outcomes.
A survey by the Neurological Alliance in 2016 showed that almost 20% of patients waited more than a year to see a neurological specialist after seeing a GP. The survey suggests that the problem has worsened, with over 42% of people seeing their GP five times or more before being referred to a neurological specialist, an increase of nearly 10% from 2014. When the PAC heard evidence on the issue of access to neurologists for its 2015-16 report, it was told that not only were there not enough but the existing neurological people were not well dispersed, leaving areas of England without any appropriate provision. The PAC concluded that better deployment of existing neurologists should happen to counter this and that other clinical staff, such as specialist nurses, might do some of the work if services were redesigned. This would be very difficult for specialist nurses. As I know from Parkinson’s nurses, for example, they already have a heavy workload and there are not enough of them; it would be very difficult for them to take on this extra work.
Care plans remain a serious problem. The Department of Health set NHS England the objective that all neurological patients should be offered a personalised care plan for 2015, and yet only 12% of patients have a written care plan. This results in unco-ordinated care. Parkinson’s UK frequently hears of people without access to a multidisciplinary team which would usually co-ordinate care for its patients. Without this team, people with Parkinson’s have to interact with many health and social care professionals across primary, secondary and tertiary care, which leads to duplication of services and support, while wasting NHS resources and providing a poor outcome for that person.
Data are central to driving up the quality of neurological services and the outcomes for patients. Excellent work is being done by, for example, the Neurology Intelligence Network, which identifies and collates indicators of adult neurological conditions. One example of its work is its neurology-focused “commissioning for value” packs produced by the Right Care team, which will give commissioners a huge and much needed opportunity to use local data to identify key improvement areas for neurology services. The right data and intelligence are often vital to support research to develop better treatments and, one day, hopefully, a cure for Parkinson’s and other neurological conditions. Supporting quality in neurology services means supporting research, all of which will boost care outcomes, which is what people want and deserve.
I have posed a number of questions that need to be addressed and I hope that the Minister can respond to them tonight. However, in order to explore them further, will the Minister be prepared to meet with me and others with an interest in this subject at a later date? I look forward to the Minister’s response and to the contributions of other noble Lords.
My Lords, I thank the noble Baroness, Lady Gale, for securing this debate and for returning to a subject which affects millions of people in this country. I will focus later on the 127,000 people who suffer with Parkinson’s, and the increasing number of them who have benefited from deep brain stimulation surgery.
As a surgical trainee in the 1970s, my experience of neurosurgery was through performing “burr holes”, a modern version of trephining. This was a skill performed by the Incas, normally to allow evil spirits to leave the brain—whereas, in my case, it was to take pressure off the injured brain after a head injury. Forty years on, with the advent of modern diagnostics and specialisation, general surgeons no longer operate on the brain.
The question I want to ask is: do we have enough neurologists and neurosurgeons to deliver what is now an increasingly complex service? In June, the noble Baroness, Lady Gale, raised the questions she addressed in her opening speech around the services that were to be provided. The noble Baroness, Lady Finlay, who is in her place, made reference to the fact that one of the factors that affected this was the low numbers of neurologists and neurosurgeons—factors which would influence delays in diagnosis, poor outcomes and a widened variation in access and treatment.
Epilepsy is a case in point. Sir Muir Gray, in his Atlas of Variation, made reference to a twofold variation in emergency admissions of patients with epilepsy and a fourfold variation in elective admissions—important differences for those who have to access epilepsy surgical programmes. Delays in diagnosis for neurological patients in general is an issue. Over 42% of patients see their GP five or more times before they see a neurological specialist, and 20% wait a year before seeing a specialist at all.
Information I have received from the Royal College of Surgeons suggests that there has been a sharp rise in the number of patients waiting longer than 18 weeks, particularly in neurosurgery. Since February 2016, neurosurgery has been the worst-performing surgical speciality in terms of waiting times. There are also regional variations. For example, of the 717 patients waiting for neurosurgery in Plymouth last October, 59% had been waiting longer than 18 weeks, compared to an average of 16.5%.
In the past 10 years, the number of neurologists in the NHS has grown by 5% to 650 full-time equivalent consultants. However, they are not well distributed. Currently, also, 30% to 50% of new consultant posts remain unfilled due to a lack of specialist neurological trainees. Can the Minister say why NHS England believes that the current rate of growth is unlikely to change in the coming years, and what can be done to improve recruitment? I believe that NHS England is due to report on the availability of neurologists and on variations in access in hospitals in April 2017. He may wish to throw some light on this and give the House a heads-up on what it is likely to say.
I welcome, through the National Institute for Health Research, the £816 million that has been provided to 20 NHS and university partnerships—seven of which expressed interest in neurosciences and neurological conditions. Sheffield University, in particular, specifically identified translational neuroscience for chronic neurological disorders as one of the things it would do research in. However, 50% of the funding went to the usual suspects—Oxford, Cambridge, UCL and Imperial—which took up the major slice of the money.
When I was president of the Royal College of Surgeons I became aware of the work of Professor Tipu Aziz and Professor John Stein at Oxford and I went to visit them. They had started and had been using deep brain stimulation in primates as part of their research, and then subsequently for patients with Parkinson’s disease. As a result of Professor Aziz’s use of primates in his research, they suffered abuse and attacks from animal rights activists. In fact there was a protest, which some noble Lords may recall, when students in Oxford came out in support of the research because of the benefits for patients.
I subsequently saw Professor Aziz silence his critics on a BBC programme, discussing the ethics of animal research. Many in the audience spoke against any form of animal research. A gentleman quietly got up, rose to his feet and extolled the virtues of surgical research. He looked no different from anybody else in the audience. Suddenly, in mid-sentence, he threw a switch and changed from his normal persona to a man with an uncontrolled tremor, violent shakes and a complete change in his demeanour and persona. He was demonstrating symptoms of Parkinson’s that had been kept under control with his deep brain stimulation. I personally had never seen such a transformation on live television, and I am sure that it did a lot to demonstrate to people what surgical procedures can achieve.
There are currently 16 centres in the UK: one in Scotland, in Glasgow, and the rest dotted around England, mostly clustered, as I said, around the golden triangle—I think there are about five or six in London—and in the Midlands and the north of England, in Newcastle. In the south, which is usually the part of the country that is heavily supplied with healthcare, there is nothing other than in Bristol.
NHS England has produced policy documents on deep brain stimulation for movement disorders such as Parkinson’s, in 2013, for chronic neuropathic pain, in 2014, and, more recently, in 2016, for central post-stroke pain. Will the Minister tell us what the likely outcome is of these policy documents? What impact will they have on improving access and reducing variation?
My Lords, I congratulate the noble Baroness, Lady Gale, on having brought up this most important topic. I want to pay tribute to my late friend, Lord Walton of Detchant, a remarkable neurologist who did so much to help research and promote the needs of people with muscular dystrophy. He inspired young doctors and encouraged them into the speciality of neurology. Had he been in your Lordships’ House today, he would have been speaking in this debate. We need more inspired and dedicated neurologists like Lord Walton to give the NHS the leadership that it needs.
I declare an interest as president of the Spinal Injuries Association. I founded this organisation in 1974 as I saw the need for people with spinal injuries who remained paralysed to have the best life possible. There are many different ways injuries can happen, but the vital need is that these patients get the specialised care by trained doctors, nurses, physiotherapists and other dedicated staff. Spinal units do a great job, but they are working under great stress and pressure. The shortage of dedicated staff has meant that the Spinal Injuries Association has had to employ two trained nurses in the specialty of spinal injury. These nurses can advise when spinal patients have to wait in general hospitals for the specialised treatment they need because there are such pressures on the specialised hospitals. There are also specialised nurses funded by the Stroke Association, Parkinson’s UK and other patient-centred organisations who really know the needs and priorities. Again, there is a need for a sufficient number of adequately trained and well-supervised specialist headache nurses in post across the country to meet the demand of the high cohort of headache patients.
Many patients with neurological conditions need extra help when first afflicted and in hospital, such as those who have had a stroke. They may need help with feeding and can have difficulty with swallowing, washing and bowel, bladder and skin care. It is of great concern that the staff crisis has grown as foreign nurses abandon the NHS. With the referendum last June, the introduction of the tougher language tests last year, and the fall in the pound, there has been a dramatic fall in new arrivals. In 2015, thousands of EU nurses came to work in Britain, but the numbers arriving have fallen every month since July.
Patients, where possible, always want to stay at home, but there has also been a dramatic fall in carers coming to look after them from abroad; by no means are there enough people in England who want to do these jobs. I hope that the Prime Minister, who has so much on her plate, will realise that there is a desperate need to encourage and help more nurses and carers, who must be retained to help look after these patients who cannot survive and lead a life in their communities without them. Some time ago, the local people in north Yorkshire who had Parkinson’s disease had an excellent doctor from Germany. Everybody concerned appreciated his skills and care but, sadly, he moved to Saudi Arabia. Will the Minister tell us how these much-needed doctors can be retained?
There is a need to have more staff awareness of Parkinson’s in GPs’ surgeries. To give an example, a receptionist told a patient that the doctor was ready to see him. He froze. He was told, “Hurry up; we have not got all day”. The situation got worse. Neurological conditions are disorders of the brain, spinal cord or nerves. The latest figures available estimate that the total number of neurological cases has now reached 12.5 million. The Department of Health and NHS England need to address the shortage of neurologists and the variable provision across the country as a matter of urgency.
As a high-lesion paraplegic, having had a spinal injury, and having had a husband who had a stroke and developed Parkinson’s disease, I know too well what it all means. I ask the Minister, who has youth and energy on his side, to help his colleagues in government to realise how important it is to provide the means to the NHS so that it can provide the care that is needed. Children are being put at risk because of shortages in trained experts in X-rays and scans. The Royal College of Radiologists has warned that just one of 12 standards introduced in 2010 for children’s radiology is being met.
There are thousands of complicated, rare conditions in neurology. Will the Minister tell us why the post of national clinical director for neurology has been cut? I cannot understand how this has been cut as part of NHS streamlining. Advice to so many people—including the Government—on such varied and complex complications is vital. Several strategic clinical networks have been closed down. Will the Minister assure us that the neurology network will remain? Integrated neurocare—bringing together disciplines and specialties when there is a primary neurological condition such as spinal injury, which affects so many systems—must be the correct procedure. This should be the same for autonomic conditions. Working together as a team, including the patient, rather than in isolation, must be the way forward.
My Lords, I congratulate the noble Baroness, Lady Gale, on securing this evening’s debate on neurological services. This is a large and important topic, and I shall focus my remarks on just one neurological condition: motor neurone disease. I thank the Motor Neurone Disease Association for providing me with a briefing for this evening.
The Minister is relatively new to his brief as a Health Minister, and he might not be aware of this devastating condition. In fact, the low prevalence of motor neurone disease, affecting around 5,000 adults in the whole of the UK at any one time, means that it is not well understood within the NHS. In turn, the services provided by the NHS for motor neurone disease sufferers are often inadequate.
While its prevalence is low, those who encounter the disease among family, friends or colleagues—as I did over 30 years ago—will never forget it. It is a horrible and rapidly progressive neurological disease that affects the brain and spinal cord. Muscles fail, leaving sufferers unable to walk, talk and eventually breathe. It can also affect thinking and behaviour. Most are fully aware that their bodies are failing and that they will die from the disease. There is no cure for MND: one-third of sufferers are dead within one year of diagnosis and half are dead within two years. This is why the availability of high-quality neurological services is vital.
It is clear that neurological services have been downgraded by NHS England at the national level. There is no longer a national director for neurological services, and this has led, as the Public Accounts Committee in another place predicted in 2015, to a loss of clinical leadership and accountability. With neurology not embedded in the leadership structures and accountability frameworks of the NHS in England, it is not surprising that there is disengagement at the local level within clinical commissioning groups. Without national leadership, clinical commissioning groups will not focus on services for lower-prevalence, complex diseases with the same urgency as those for services which have vocal national champions.
The result is clear. Fewer than one in six CCGs has assessed costs relating to the provision of neurological services, while only around one in five has assessed the number of people using those services and the prevalence locally of neurological conditions. Only one in three bothers to ask patients what they think about the services. The Minister should not be surprised that the Neurological Alliance found that nearly 60% of patients had experienced problems in accessing the services or treatments that they needed.
I do not generally get concerned about the so-called postcode lottery in the NHS. I believe that it is an inevitable part of a devolved NHS, with power in the hands of local clinicians and organisations, that there will not be a uniform service across the NHS. Local areas will set their own priorities. But I cannot begin to defend what is happening in neurological services. It is shocking. One-fifth of CCGs have no local consultant neurological services whatever and the majority do not provide more than 80% of appointments locally. I ask the Minister to contemplate what this means for a motor neurone disease sufferer seeking a diagnosis or specialist treatment against the background of a progressive and fatal disease.
The story does not end there. The most recent attempt to look again at what the NHS does, via sustainability and transformation plans, seems largely blind to neurology and had little input from specialists in this area. These plans will be driving service provision in the future, and unless NHS England wakes up to the lack of focus on neurological services, the future will be even more bleak for those with MND.
There are also problems with specialised commissioning, which impacts MND sufferers who at times need to rely on nationally commissioned services. The Health and Social Care Act 2012 brought in a definition of a specialised MND clinic, and the NHS is required to provide clinics throughout England to that standard. NHS England has failed to do this and many of the clinics would not exist without the Motor Neurone Disease Association, which has been forced to fund what the NHS should unambiguously have been funding.
Those suffering from motor neurone disease face many other problems within the NHS in England, in particular as continuing healthcare packages are often delayed. Delay is a common strategy in the NHS for keeping financial pressures at bay. I am well aware that the financial pressures facing the NHS are acute, but financial pressures must not excuse delaying CHC assessments for progressive diseases. The Continuing Healthcare Alliance found that only 14% of the CCGs which responded to its survey last year kept to the 28-day timeframe and that the longest delay was 255 days. People with motor neurone disease cannot wait that long.
Motor neurone disease may not affect many people—but when it strikes, the consequences are terrible. This is precisely when the NHS is most needed and neurology services are essential. I am clear from the briefing that I have received that the NHS is failing MND patients with these services. I hope my noble friend the Minister can tell the House this evening that the Government understand the problems, that they recognise that these are very real issues and that they will tell NHS England to sort neurological services out.
My Lords, I congratulate the noble Baroness, Lady Gale, on her ongoing and persistent work on behalf of neurological patients. Up to a fifth of acute medical admissions are neurological problems. The second national survey of acute neurological services is about to be published and despite indications of some improvement in the past two years, we still lag way behind Europe and the US overall. With around a sixth of the neurological workforce of Europe the NHS cannot cope, let alone deliver optimum care. The hospitals surveyed reported limited access to neurologists overall. The 28 neuroscience centres have seven-day consultations, but over a quarter of general hospitals have a neurologist on for only three or fewer days a week, while a fifth of clinical commissioning groups offer no neurological services at all—yet accurate diagnosis is key.
Neurology input leads to a revised diagnosis and new management plan in 79% of patients—that is, four in five. Time matters: neurological emergencies can become permanent disability in minutes or signal a devastating progressive diagnosis. Open conversations must start early. As disease advances, specialist palliative care can dramatically improve quality of life and ensure a calm and dignified death. With specialist planning, and I declare my interests, those deciding to stop interventions such as ventilation have breathlessness and distress controlled. They are not left gasping and choking, as the press horror stories portray. Everyone with advancing neurological disease should be offered access to specialist palliative care; currently, only a minority are.
The Association of British Neurologists is working closely with NHS England, through Professor Adrian Williams, but there is only so much that they can do. Will the Government now establish a national strategy for acute and chronic neurological services to address the variations in care, and will they ask Health Education England to increase training opportunities in neurology and in specialist palliative care?
My Lords, I too congratulate the noble Baroness, Lady Gale, on introducing this important debate. It has highlighted a number of serious issues in relation to the provision of treatments and services for people with neurological diseases. These diseases may be incurable in many cases but there are many treatments and services that can improve symptoms, and improve the quality of life and death, for these patients. It is important that we look at the reasons why many are not getting them.
There is clearly a great deal of variability in the quantity and quality of care and services received by patients in different parts of the country. One of the demands made in the briefings that we received asked for a national service review, so that we can be aware of the state of services across the regions. It would be interesting to know how many of the STP plans include a local review of demand and service provision.
The briefings that we have received from various organisations are agreed about many of the issues. They are agreed that the current confusion as to who is responsible for these patients must be cleared up immediately. Since 2013, as the noble Baroness, Lady Gale, pointed out, there has been confusion because NHS England is responsible for specialised commissioning and the CCGs are responsible for other treatments and services. However—sadly—many CCGs have assumed that the whole responsibility lies with NHS England and this has resulted in patients suffering.
The evidence for this is clear. Only one CCG in five even knows the extent of neurological disease in its area and therefore the others have no strategy for addressing this. As we have heard, there is contradictory information in the manual for prescribed specialised services and the adult neurosciences service specification. The DH can do something about this right away. Will the Minister now set in train the process of launching the new national service standard along with—and this is important—a plan for promoting it among the commissioners? There is no point in it sitting on someone’s shelf. Will he also put in place a process for collecting information about whether commissioning for neurology has improved as a result of this change?
This leads me to the issue of data, on which there is also considerable agreement. Of course, if we do not collect data in an appropriate and consistent format, we will never be able to assess whether there have been improvements and where the gaps are. That is why I welcome the creation in 2014 of the Neurology Intelligence Network. Its work has already helped commissioners and other groups so I ask the Minister whether this work will be supported in the long term. This information is vital if we are to develop better treatments and even cures for some serious neurological diseases. It is also important that plans are put in place to improve the linking of health and social care data, because these help us to understand whether the well-being of patients is improving.
Clinical leadership is another issue that has been raised. Can the Minister explain why the National Clinical Director for adult neurology was scrapped, despite the good work done? How does the DH believe that the drive for better neurology services is being led in the absence of the clinical director—somebody who can really put some drive behind improving services—or has neurology simply been given a low priority?
I am aware that, since the post was scrapped, the Neurological Alliance has worked with the NHS to set up the National Neurological Advisory Group consisting of several senior experts. This is welcome, but will the Minister say how this group’s advice is being put into practice and whether it will continue to be supported? How is the advice being evaluated and disseminated? Will there be, as others have demanded, a national plan for neurology?
Talking of national plans leads me to mention the national stroke strategy. I wondered whether I could legitimately speak about stroke in this debate but I came to the conclusion that I could because although strokes are caused by vascular breakdown, they result in neurological problems that are often severe. The difference, however, between stroke and some other neurological diseases is that many stroke survivors can recover well and go back to their old life, becoming once more productive contributors to society—that is, as long as, once they leave hospital, they have the necessary rehabilitation which may involve speech therapy, physiotherapy, occupational therapy, mental and emotional therapy and much more.
The national stroke strategy has been a great success. Not only has it led to reconfiguration of services in many places, where centres of excellence are saving more lives and leading to far less disability, but there has also been more provision of the rehabilitation that patients need to help them get well and not feel so isolated. We can label it a great success. However, as with rehabilitation, which needs to carry on in the long term or patients can go backwards, the national stroke strategy, which comes to an end soon, needs to be continued or replaced with a new strategy to build on the achievements of the old one. What plans do the Government have to replace or extend the national stroke strategy to ensure that we do not lose the improvements that have been made to services over the past few years?
Rehabilitation is also important for other neurological conditions—for example, for people who have had a tumour removed. It seems that it is quite fashionable to raise money for flashy scanners for diagnostics. These are, of course, important because early diagnosis is vital. However, it seems that this is more important to some than to recruit, train and pay for the skilled people who are needed to help people to get over the effects of stroke and other neurological problems. I fear that the effect of Brexit is going to be dire on the supply of many of these people and on the supply of radiographers and radiologists who can interpret the results of the scans. These are vital for the recovery of so many patients.
My Lords, it is a great pleasure to thank my noble friend for inaugurating the debate and for the persuasive case that she put across on the need to improve neurological services. To echo the noble Baroness, Lady Noakes, I commend the three excellent briefings that I received from the Motor Neurone Disease Association, the Neurological Alliance and Parkinson’s UK. My noble friend spelled out some of the key issues. To summarise, what she is saying is that one way or another we have lost national leadership. Whether it is through the national clinical director or the strategic clinical networks, at a national and local strategic level we do not seem to have the leadership required to drive through improvements in neurological services.
At the local level, the stunning evidence provided by the noble Baroness and by the Motor Neurone Disease Association is that because NHS England clearly does not regard neurological services as a priority, clinical commissioning groups have taken that as a signal to disengage themselves. That is why the data collected by the Neurological Alliance have shown that CCGs are so uninterested in these services.
This should not come as a surprise. Looking back at the various reports written in the last two or three years, I am particularly struck by the Committee on Public Accounts in February 2016. It said then that with over 4 million people alone in England having a neurological condition,
“Services for people with these conditions are not consistently good enough, and there remains wide variation across the country in access, outcomes and patient experience”.
Other noble Lords have made that point. The committee made a number of important recommendations, including on information. I echo the point made by the noble Baroness, Lady Walmsley, about that. They hark back to the core issues raised.
What is going to be done to make the best use of available neurologists and reduce the variations in access, which seem unacceptable? The second issue is the role of national clinical director for adult neurology. I hope that the Minister is not going to say that that is a matter for NHS England, because ultimately he will find that he will take responsibility for the decisions that NHS England makes. The contrast with now is that when national clinical directors were appointed, they were appointed by Ministers to serve in the Department of Health. They worked in Richmond House. They had direct access to Ministers. NHS England clearly does not like the concept of national clinical directors because when they were established by NHS England they were often very part-time roles, they were given virtually no administrative support, and we can see that time after time it has sought to reduce their influence and add to their nominal responsibilities.
The beauty of national clinical directors is to have front-line clinicians involved at the most senior level in the development of policy. This has all been lost in the way that it has been handled by NHS England. I hope that we will not be told that these matters are best done locally through CCGs, as we have seen that CCGs simply do not have the capacity to think through and commission neurological services. It is quite clear that the moment they get a signal from NHS England that it is no longer very important—and clearly that is a signal that NHS England has given—they simply will not engage. That is why the CCG returns have been so lamentable.
The noble Lord, Lord Ribeiro, made a point about the numbers of neurologists and neurosurgeons. Is Health Education England reviewing this and what are we going to do about the variation throughout the country? Can the Minister confirm that waiting times are slipping? Do Ministers now accept that in fact the targets for patients who require neurological or other services are never going to be met? I will also pick up the point the noble Lord made about animal research. I agree with him that it was the march by students that completely turned opinion in this country in favour of responsible animal research, where other means are not possible. I am sure that he, like me, supports the three Rs, whereby animal research is used sparingly and responsibly but none the less has an important role to play. I hope the Minister will affirm that that continues to be the Government’s view.
The noble Baroness, Lady Masham, raised a very important point about specialist nurses. My impression is that the number of specialist nurses is going down and that they have become a very scarce resource. The noble Baroness, Lady Walmsley, also made a point about the implications of Brexit—could the Minister comment on that? Brexit itself, the fact that people who would have come from the EU may feel that the UK is not as welcoming as it used to be, and the economic downturn which I think will inevitably come our way over the next few years could all have consequences in the future. Can he at least say what the Department of Health is doing to work out the impact of Brexit in terms of staff movements? That would be very welcome indeed.
The noble Baroness, Lady Masham, said that the Minister brings youth and energy. I hope after a year or so in his post answering such debates, he will still bring youth and energy. This is a very important subject, and I also hope he will agree to the request from my noble friend for a meeting with her and representatives of the sector.
My Lords, first, I thank the noble Baroness, Lady Gale, for securing a debate on this important issue. I am new to the brief but I know enough to know that she is a forceful campaigner on these issues and I very much respect her knowledge and opinion. Indeed, I thank all Peers who have spoken for their very informed and expert contributions. I will do my best in the time available to answer as many questions as possible. To answer the noble Baroness’s request, I would be extremely happy to meet her and others in order to discuss these issues following on from the debate.
As many noble Lords have said, neurological disorders can have a serious impact on people’s quality of life, cause disability and affect family members and carers. It is estimated that there are around 4.7 million neurological cases in England, with the UK prevalence of specific conditions including: 400,000 people with epilepsy; 100,000 people with multiple sclerosis; 5,000 people with motor neurone disease; 120,000 people with Parkinson’s disease; and 60,000 with neuromuscular disorders. It is probably fair to say that there is scarcely a family in England that has not been touched in some way by neurological illnesses and disorders. The NHS spends around £3.5 billion a year on neurological care—excluding stroke care, which is on top of that.
Since NHS England assumed its responsibilities as national commissioner and leader for the NHS in 2013, there have been a number of important initiatives aimed at improving neurological care, including the development of a national specialised service for neurological conditions to ensure that people with complex problems can access high-quality neurological care. The Government have established a national children’s epilepsy service that offers the chance of symptom improvement and even cure for children whose epilepsy cannot be well managed by routine treatment.
There is now a national augmentative and alternative communication service to provide support to patients with complex and progressive conditions such as motor neurone disease who cannot speak. The National Institute for Health and Care Excellence has provided a range of expert guidance to manage neurological conditions, including a motor neurone disease guideline in 2016 that was described by one of the leading charities as “hugely significant”. So, although I recognise the comments of noble Lords about what can still be done, good progress has been made.
The Public Accounts Committee report was mentioned in many speeches tonight. As noble Lords are aware, the committee published its progress report on neurological services on 26 February 2016. In their response on 28 April 2016, the Government agreed with three of the committee’s recommendations, around supporting CCGs with neurological commissioning, reporting back to the PAC on reductions in variation and providing greater clarity on who commissions what in the system. Less than a year on, we have been implementing those recommendations. Furthermore, progress has been made in a number of areas relevant to the PAC recommendations that were not accepted by the Government, as I will set out.
The noble Baronesses, Lady Finlay and Lady Walmsley, both talked about reducing variations in neurological care, as did other noble Lords. I think it is fair to say that this is not a problem that is unique to neurological services. Nevertheless, the Government recognise that there is work to be done.
We agreed with the PAC recommendations about reducing variation in neurological care in services and access to specialists. Reducing unwarranted variation is crucial to improving services and patient care, and to efficiencies. The overall programme to reduce variation across the NHS is delivered through the RightCare programme to all clinical commissioning groups. Of the 65 CCGs in wave 1 of the programme in 2016, 40% prioritised neurology because it offered a substantial opportunity to reduce variation in services and outcomes compared to other pathways. A similar proportion of the 144 CCGs in wave 2 are expected to prioritise neurology to the same degree in 2017.
RightCare is already delivering results. For example, the Southampton CCG discovered in 2014-15 that it had spent £1.5 million more on neurology emergency admissions than similar CCGs, particularly for headaches and epilepsy. In response, the CCG is providing education and support to GPs on managing headache and migraine patients and is working with local hospital consultants to develop a protocol for migraine management in A&E to provide quick access to diagnostics, avoiding emergency admission wherever possible. On epilepsy, the CCG is considering whether additional clinical expertise, such as specialist nurses, is needed in community services.
More information was clearly needed on the prevalence and outcomes of diseases, and that led to the creation of the Neurology Intelligence Network, which several noble Lords talked about. This sits within Public Health England, collates and interprets data on neurological conditions and works with the RightCare programme to develop neurology-related metrics that will offer further insights into neurological services and outcomes. The network will also run a best-practice and knowledge-sharing session for CCGs in March 2017, prioritising neurology. I can confirm that the Neurology Intelligence Network continues to be supported financially, and that local areas will continue to have their own neurology networks.
The issue of national clinical leadership has featured heavily in the debate. The Government did not agree with the PAC’s recommendation to retain the national clinical director for neurology. We recognise that NHS England’s decision to remove the post came as a disappointment to stakeholders. However, decisions about clinical priorities, including those regarding clinical advisory structures, are a matter for NHS England, as is consistent with the overall vision of service delivery that is clinically led. I am, however, more than ready to speak to NHS England about its general attitude to national clinical directors, and specifically on neurology.
The creation of the new neurology advisory group has been welcomed by noble Lords tonight. It brings together key system partners, professional bodies and stakeholders to align work to improve neurological care. This is the right point at which to express my gratitude to NGOs, charities and voluntary groups involved in supporting neurological care in the UK. The group is led by Professor Adrian Williams; it met first in October 2016 and is currently working with stakeholders and developing its plan.
The Government also disagreed with the PAC recommendations about how it held the NHS to account for delivering care plans. This was mainly because the objective no longer featured in the mandate and the previous metric used was unreliable. However, two important developments have recently taken place. First, in July 2016 NHS England announced a deal to grant 1.8 million people with long-term conditions access to the patient activation measure as part of its self-care support programme. This is a tool which captures the extent to which people feel engaged and confident in managing their care and helps professionals tailor support accordingly. It is an important part of ensuring that services are accountable to patients.
Secondly, and also in 2016, the final report of NHS England’s Realising the Value of Self-care programme was published. This provided a range of tools and resources, including an economic model to help the local NHS understand the costs and benefits of self-care approaches, such as peer support and health coaching. Evidence from the programme demonstrated that access to self-care can be effectively provided by systematically putting in place personalised care planning.
The noble Baroness, Lady Gale, asked about the clarity of commissioning responsibilities. This was an area where the Government were able to accept the PAC recommendation to better define responsibilities. The updated services manual was published in May 2016 and describes the responsibilities of NHS England and CCGs in terms of neurology outpatients. Specifically, it sets out that NHS England is responsible for only those services where the patient has been referred by a consultant to that service.
Going further, the neurosciences service specification, which sets out the design of specialised neurological care, is also being revised and NHS England is developing plans for consultation during the financial year 2017-18. I am keen to hear from noble Lords about any examples of patients falling into the gaps between CCGs and NHS England’s specialised commissioning, and I will ensure that when the new neurosciences service specification has been published there is a proper promotional plan to spread best practice throughout the healthcare system.
I will touch briefly on two further issues: personal health budgets and research. There is an extension of personal health budgets throughout NHS England at the moment, and anyone with a neurological condition who is eligible for NHS continuing healthcare has the right to a personal health budget. Beyond this, CCGs have flexibility around their introduction and are developing local plans which would include services used by people with neurological conditions, such as rehabilitation or wheelchair provision.
In the first six months of this financial year, almost 11,000 people had a personal health budget—an increase of 130% on the same period last year. By March 2021 between 50,000 and 100,000 people will benefit from a personal health budget.
Finally on research, there is clearly a need for more research, and spending on research through the National Institute for Health Research on neurological conditions has almost doubled since 2010.
I will now pick up a few points made by noble Lords in the debate, specifically ones I have not yet addressed. On the question of the workforce, in September 2016 there were 1,325 neurologists, compared to 1,019 in May 2010: that is an overall increase and includes 200 more consultants and 100 more doctors in training.
I very much take on board the point about distributional issues: whether areas of the country are not getting the right kind of support. I shall certainly look at that to find out what is happening and write to Peers. At this stage, I would not be too concerned about whether they are featuring properly in sustainability transformation plans—they are not attempting to be comprehensive about all conditions at this point—but it is important to watch them to ensure that neurological conditions get the attention that they deserve.
Several noble Lords mentioned waiting times. Clearly, we have referral targets, which should be met for neurological conditions, as with others. We are working with NHS England to ensure that that is done and that the staff are in place. Early diagnosis is also important, and NICE will be producing new guidance in January 2018 on that. I hope that that provides some reassurance to the noble Baroness, Lady Finlay.
The noble Baronesses, Lady Masham and Lady Walmsley, and the noble Lord, Lord Hunt, asked about the impact of Brexit on the workforce. Clearly, the health and care system is reliant on foreign workers. We will take that into account in negotiations and other opportunities, and are increasing domestic recruitment. I will not touch on the national stroke strategy here; that is for another time.
Finally, in response to the noble Baroness, Lady Masham, who praised me for my youth and energy, I say: long may that continue, and I will certainly do what I can to bring them to bear for the benefit of those patients who are suffering from these illnesses. I again thank the noble Baroness, Lady Gale, for tabling the debate, and all noble Lords for a useful, interesting and informative discussion.