(11 years, 5 months ago)
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Baroness Ford
To ask Her Majesty’s Government what progress has been made in improving neurological services, and in particular the provision of epilepsy services, in the United Kingdom.
Baroness Ford
My Lords, I am very glad to have the opportunity to table this Question for short debate this evening, which is now a longer debate. It covers a really important topic at a time of great change and potentially great opportunity for the National Health Service. The opportunity is there to improve neurology services if the clinicians and managers in charge of the new arrangements enable this to happen. But the converse is also true: there is also a risk that current service levels, already unacceptable in many parts of the country, will deteriorate, and I hope that the Minister will address that risk in her response.
I begin my declaring my interest as honorary president of Epilepsy Action, the national charity. I have had the privilege of being associated with Epilepsy Action for some years now and the work that it does and support that it provides for people with epilepsy and their families is simply tremendous. I also have close family experience of the condition and so completely understand the frustrations and challenges that managing the condition brings and of the hit-and-miss nature of the services in different parts of the country.
First of all this evening, I would like to draw attention to the wider issue of neurology services in general. The National Audit Office published a report in 2011 into services for people with neurological conditions, and it is worth reminding ourselves that neurological conditions affect about 8 million people in the UK. The report was not positive. Despite an astonishing 38% increase in spending between 2006 and 2010, there was no commensurate improvement in outcomes. Specifically, people received little or no support after diagnosis. Ongoing care was often fragmented and unco-ordinated. People admitted to hospital as an emergency were usually cared for by health professionals without any neurology experience or knowledge, and perverse performance incentives resulted in a cycle of referral, discharge, and referral. So, one has to ask, where was the money going?
The Public Accounts Committee did just that, and in response, produced an excellent report that set out six recommendations on how the situation could be improved. To their credit, the Government agreed to implement four of these. Can the Minister tell us what progress the Government have made on the PAC recommendations that were accepted? First, can she tell us what progress has been made in the promise to offer a care plan to each person with a neurological condition? The promised implementation date was April 2012. Secondly, the Government agreed to develop a generic neurological quality standard, again by 2012. Can she say what progress has been made in this? Thirdly, a commitment was also given to a plan for driving improvements in quality. This was promised by April next year and so an update on progress would be welcome. Finally, a promise was made to produce a neurological dataset—an extremely important commitment by the Government—by April 2014. Although that is still some way off, again, an update would be welcome.
All of these commitments were made by the Government and will go some way to helping the situation. But I would also like to ask the Minister whether the Government will again consider the recommendation by the PAC to appoint a national clinical lead for neurology. Given that there are currently 8 million people with neurological conditions in the country, that is not a huge ask. We have very welcome national clinical leads for other conditions such as dementia and diabetes, conditions that affect far fewer people, so why is the chief executive of the NHS so resistant to appointing a clinical lead in this important area, particularly as we know there is real room for service improvement and money is not being well spent? Perhaps the Minister can tell us.
The Minister might also like to say why the Government were resistant to mandating joint commissioning at exactly the time when the new NHS arrangements are expected to be significantly more joined up than before. It occurs to me that mandating joint commissioning is simple common sense now.
Turning to epilepsy services in particular, the Minister is aware of the 2009 report by Epilepsy Action, Epilepsy in England: Time for Change. We debated it in this House in September 2010. At that time, I expressed my great frustration that many of the basic building blocks of a decent service were still not in place. Two years on, there has been a slight improvement—I stress slight—but no real movement in getting to an acceptable standard of service.
That brings me to the changes planned for the NHS. The opportunity is clearly there to improve the service for people with epilepsy. But is the will there, and is the leadership there? The new clinical commissioning groups will have a critical role to play in providing and improving services. They could develop a much better quality service than has been the case in the past. But so far the evidence in terms of their planning is not reassuring. Epilepsy Action has been carrying out research into how the NHS in England is preparing for the reforms set out in the Health and Social Care Act. We will publish this research in January 2013, but our findings so far show that two thirds of the clinical commissioning groups that were surveyed do not have, and do not intend to produce, a written needs assessment of the health and social care needs of people with epilepsy. How on earth can appropriate services be provided without a clear assessment of need?
Equally, fewer than one in five clinical commissioning groups that responded has appointed a clinical lead locally for epilepsy. In the absence of a national lead, there is a serious vacuum if there is no local leadership either. Is this something that the Government are prepared to tolerate? How can we possibly maintain and improve services against such a backdrop?
My plea to the Minister is that the Government get on top of this and send out a very clear message to clinical commissioning groups that long-term neurological conditions have to be taken seriously and services planned appropriately. The services for people with epilepsy have not been at anything close to the NICE guidelines for many years. It would be a tragedy if the changes that the Government are implementing now cause the situation locally to deteriorate further because there are welcome changes at a national level, particularly in respect of national or specialised commissioning.
As I understand it, once the changes are implemented, specialised commissioning will become the responsibility of the NHS Commissioning Board. This is a major change and offers a real opportunity to improve services. A single national specification and single national commissioning policy should lead to more consistent standards of care and an improvement in care in those areas where the quality of care in the past has been highly variable. This is a big step forward and I would ask the Minister if she might say a little more about this in her summing up.
Greatly to be welcomed also is the move to commission epilepsy surgery for children nationally. The Government have committed to a three-fold increase in the availability of this surgery, which is fantastic news. Perhaps the Minister could also say whether there will be a commensurate increase in the availability of surgery for adults with epilepsy too, given that we know how totally life-changing and life-enhancing the surgery can be when used appropriately.
There is a huge opportunity to improve services for people with a range of neurological conditions, and we particularly welcome the planned clinical network for neurology. This is a really good step forward. There have been some important changes in the way that the Government have looked at these issues nationally and the new arrangements are to be applauded, but the worry persists—it has been a constant worry all the way through the passage of the Health and Social Care Act. That worry relates to how well the clinical commissioning groups will focus on long-term neurological conditions such as epilepsy, how they are to be held to account for the services that they provide and what the Government will be prepared to do in the event that such services continue to fall short of the basic guidelines set out by NICE. Epilepsy services are already a long way off being acceptable. The last thing we want is for that situation to persist.
Baroness Jolly
My Lords, I thank the noble Baroness, Lady Ford, for bringing this important issue to our attention, especially at a time when decisions are still being formulated by the NHS Commissioning Board. We know that neurological conditions and epilepsy in particular are great challenges facing the NHS. The efficient and effective provision of these services is crucial to the good care of the estimated 8 million people in England who have neurological conditions and the 600,000 of those who have epilepsy.
We know that good treatment of these conditions is vital. However, my comments today focus less on the method of treatment than on the commissioning of the care. Under the coming system of healthcare commissioning through GP-run clinical commissioning groups, will the Minister guarantee the training and resources to support GPs in these new roles for the commissioning of neurological care? Specifically, what is the NHS board doing adequately to prepare clinical commissioning groups to commission high-quality, appropriately targeted epilepsy and other neurological services?
I shall separate my concerns into three areas. First, I am concerned that neurological conditions have not been made enough of a priority within the Government’s objectives for the NHS. Secondly, I welcome the national network, but am concerned that our current approach to neurological care lacks focus, including, as it does, dementia and mental health. My third and perhaps greatest concern is that the board should help create and sustain local or regional neurological networks to support the commissioning process within CCGs.
On my first concern, what are the Government doing to ensure that there is adequate emphasis on and measurement of neurological care? Are these conditions being recorded by GPs? If they are not being recorded, we do not know where they are and we cannot plan properly
Some groups have come forward citing that only three out of the 60 outcomes within the 2012-13 NHS outcomes framework were neurological. Without appropriate outcome measures driving change, key problems with diagnosis and treatment may not be resolved. For example, Epilepsy Action notes that the epilepsy misdiagnosis rate is 20% to 31%—that is, between one-fifth and a third—meaning that around 138,000 people are currently misdiagnosed each year. What have the Government done within the new mandate to react to these past criticisms? How are decisions made about the relative focus among different conditions and how can we be sure that this is adequate?
On my second concern, recent reports from the National Audit Office and the Public Accounts Committee have cited some areas within neurological care as being in need of improvement for increased co-ordination of care, to address delays in diagnosis and to address recent increases in emergency hospital admissions. For example, 66% of patients with epilepsy presenting at an emergency department have not seen an epilepsy specialist in the previous 12 months. It is important that the Government develop a consistent national strategy and then help co-ordinate efforts in order for the board to bring this to the local level.
Lastly, I ask the Government what has been done to support local clinical leaders within neurological care, to connect them and to leverage this network to inform CCGs in their commissioning. This is the greatest concern that I have and the one that I am most anxious to see addressed.
Neurological care as I see it, especially in the case of epilepsy, fits within the spectrum of diseases for which GPs are now responsible for commissioning care. Many of the diseases for which clinical commissioning groups will commission care carry a level of familiarity with GPs—for example, various cancers, diabetes and kidney failure—but neurological conditions are not seen so frequently.
While I have confidence in the expertise and scientific knowledge of our GPs, my fear is that neurological disorders require a special understanding of prevalence and societal factors, and this leads GPs to having less familiarity with neurological conditions than with more common ailments. These networks could contribute to commissioning by helping demonstrate pathways of care for epilepsy and other neurological conditions.
While I am pleased to see the commissioning of treatment of specialised neurological conditions being carried out by the board—as has been said earlier, that is really good news, meaning that commissioning of really rare conditions will be the same across England—I believe that the board should also support and maintain local networks of neurological experts.
For commissioning under the new Health and Social Care Act to be effective for all with a neurological condition, the following three objectives must be reached. First, neurological disorders must become a priority in the measurement of clinical outcomes. Secondly, a national plan should be set out for addressing neurological conditions and, thirdly, networks of expertise should be created to inform the commissioning of CCGs and sustained support be given to them. I look forward to the Minister’s responses and the Government’s call to action on these specific issues.
Baroness Masham of Ilton
My Lords, I thank the noble Baroness, Lady Ford, for asking this important Question. There are an incredible number of neurological conditions, some very rare, all of which are important to the individual. I have a niece who has epilepsy and I know how important continuity of good-quality care is.
I stress the importance of specialist nurses for conditions such as epilepsy, Parkinson’s disease, stroke, multiple sclerosis and continence care. The withdrawal of specialist nurses would have a negative impact on services to patients. They are the consultant’s right hand. They co-ordinate care and training for other professionals and give support to patients who, without them, could deteriorate and have to be admitted to hospital.
I take this opportunity of bringing to your Lordships’ attention the vital needs of people with motor neurone disease. They have to be addressed urgently, as the condition can so often move on very quickly.
Drug development is extremely expensive. It can take more than 10 years and cost more than £1 billion to bring a new drug to market. Will the Government’s life sciences strategy, launched in December 2011, help speed up the drug approval process?
No new drug has been developed for motor neurone disease in more than 20 years. MND robs people of the ability to walk, talk, eat normally and ultimately breathe, but they know everything. Some 5,000 people in the United Kingdom have motor neurone disease, and about 1,500 of them die each year—that is about five a day.
A new campaign, founded by Les Halpin, a remarkable person who has motor neurone disease, has been set up to highlight the patient voice in this debate. It is called Empower: Access to Medicine and is focused on accelerating the drug approval process for people with life-threatening illnesses. Les Halpin has the strong support of his constituency MP, Geoffrey Clifton-Brown, and addressed a gathering of parliamentarians in June, when I met him. He has also met the noble Earl, Lord Howe, to discuss the campaign in more detail.
Genetic Alliance UK carried out a survey of patients with rare disease earlier this year and asked them for their views on trying drugs before they are fully approved. One patient replied: “If I was in a plane and offered a parachute with a 90% chance of failing, I would refuse it unless that plane was spiralling out of control towards the ground, in which case I might well be glad of it”.
Motor neurone disease—MND—is a rare condition that progressively damages the nervous system, causing the muscles to waste away. A medication called riluzole can extend the lifespan of people with motor neurone disease but it is only moderately effective. Empower: Access to Medicine is a new platform created to open the debate around the lack of drug development for patients with rare or life-threatening conditions. The discussion is not focused on one particular illness but is interested in any life-threatening illness which has a lack of drug development across the whole of the patient body. Given how long it takes to find the right combination of drugs to treat life-threatening conditions, Empower: Access to Medicine is keen to harness this collaboration to ensure that patients and doctors across the world share their experiences in an effort to improve knowledge and accelerate the timescale within which new drugs are developed and approved.
Speeding up the development and availability of drugs that treat life-threatening diseases would benefit everybody in society. The current testing and development process is long, cumbersome and expensive. In fact, a recent report by the Office of Health Economics found that it takes five years on average after launch for a new drug to win NICE approval. This timescale can be more than doubled when added to the time taken for a new drug to go from the development stage through to Phase 3 and beyond. As an example, no new drug has been approved for motor neurone disease since riluzole was approved 20 years ago.
The Empower: Access to Medicine campaign is a unique one, created for patients by patients. It is a powerful voice, rarely heard, but one that I believe could have a real impact on how pharmaceutical companies, regulators, politicians and the general public view drug development. As the director of the Oxford Centre for Accelerating Medical Innovations said:
“I am delighted to be involved in this campaign. Opening up the discussion around the lack of availability of effective drugs for rare and life threatening diseases is a vital first step on the path towards accelerating new innovative drugs”.
One of the key problems we are facing today in overcoming the lack of drugs for rare or orphan diseases is the challenge for industry in achieving a return on investment. Major drug companies have been cutting back on their research budgets because the R&D process has hit a wall of cost, time and failure rate. It is a staggering figure worth repeating: to bring a new drug to the market can cost up to £1 billion. Seriously ill patients are quite understandably more willing to try different combinations or new drugs. Because these drugs may improve their quality of life or even stop the progress of their disease, they are willing to accept the risk of possible side effects. We need to involve them more fully in the decision-making. This is a societal issue and all stakeholders must work together. We must be willing to rethink regulation, especially for rare and life-threatening diseases. The European Medicines Agency has an objective to pilot a new approach along these lines which goes under different names—for example, “adaptive licensing” and “progressive authorisation”. We must find ways for patients to access drugs more quickly.
I end by saying that there is currently no national guidance for MND. This is a huge gap. MND is rare, complex and progresses rapidly, so health professionals need clear guidance on how to care for people with this disease. Will the Minister please help to expedite the National Institute for Health and Clinical Excellence —NICE—to produce guidance and quality standards for MND? Both have been referred to NICE for development but the timescale for the guidance to start has not yet been determined. How long have they got to wait?
Lord MacKenzie of Culkein
My Lords, I join in the thanks to my noble friend Lady Ford for securing this important debate on neurological services. I have spoken in a number of debates on this subject over the past five or six years. I have an interest, partly as a nurse but more specifically because a few years ago a very close friend and colleague of mine died from motor neurone disease. After diagnosis he had good support from the health and social care professionals as well as brilliant support from St Raphael’s Hospice in the London Borough of Sutton. It was a very different story for another colleague of mine, whose father’s care before his death was nothing short of scandalous, with health and social services unable to get their act together, either within each service or between the two services. Those are two stories in different parts of the country—the postcode lottery—so I hope that I can be forgiven for concentrating, like the noble Baroness, Lady Masham of Ilton, on motor neurone disease.
I pay tribute to the Motor Neurone Disease Association for its untiring support for those living with motor neurone disease and for its funding of cutting-edge research into this miserable, rapidly progressing and ultimately fatal disease. I suspect that it is going to be a long time before we have a world free of motor neurone disease and, until that time, we need to concentrate on the best possible care for those living with it. It is to be welcomed that the Government have added improving the experience of care for people at the end of their lives to the new mandate issued to the NHS Commissioning Board in the past few days. That is good so far as it goes. It is perhaps not surprising that there is no specific reference to motor neurone disease in the mandate, but I was confident that there would be some reference to neurology. If there is one, I am afraid that I have missed it.
I find that omission to be surprising to say the least, given that, as has been said, there are something like 8 million people with neurological conditions in this country and about 500,000 new diagnoses each year. According to the Neurological Alliance, the cost to the National Health Service is some £4.3 billion each year, with social care budgets adding another £2.4 billion. That is a lot of money, but it is not surprising when almost 20% of hospital admissions are for neurological issues. Emergency admissions under this heading in the five years up to 2009-10 increased by 32% compared with 17% for the National Health Service as a whole. That does not sound to me as if there has been progress.
A great many conditions are wrapped up under the heading “neurological conditions” and these in turn get wrapped up, it seems, in the generic description “long-term conditions”. Motor neurone disease is not a long-term condition. The average lifespan after diagnosis is 14 months. So what needs to be done? It would be good if the Government were to revisit the reports of the National Audit Office of December 2011 and the Public Accounts Committee of March 2012. It is particularly disappointing that the Government have rejected the advice of the PAC relating to the appointment of a national clinical lead for neurology. Quite frankly, it is difficult to understand. Neither have the Government accepted the advice to mandate the commissioning of neurological illnesses. We know that national clinical leadership works. It has done a great job in, among other things, driving improvements on strokes and cancers. It is now essential that this is done for neurological conditions, so that improvements are driven there as well and can lead to a far greater visibility for neurology.
If there is a lack of visibility for neurology generally, specific conditions such as motor neurone disease are hardly on the horizon. Most general practitioners will see one case, perhaps two cases, if that, in a whole career, but five persons die from motor neurone disease every day and there are probably 5,000 living with motor neurone disease at any one time in the United Kingdom. It is notoriously difficult to diagnose—it can be done only by excluding every other possibility—and rapidly progresses, to the extent that 18 health or social care professionals can be providing care at any one time. Anyone with any appreciation of motor neurone disease must know that it cannot be dealt with by a one-size-fits-all approach to long-term conditions.
It is good that the National Institute for Health and Clinical Excellence has been asked to develop clinical guidance and a quality standard for the rarer neurological diseases, but is that likely to be forthcoming in the near future, or is it at the tail end of the very long list of quality standards that NICE has been asked to develop? Perhaps the Minister can tell us about that.
Any delay, together with the absence of a national clinical lead, certainly gives me no confidence in the effective commissioning in the new National Health Service of the complex services necessary for motor neurone disease so that we can get away once and for all from the fragmentation, lack of co-ordination and postcode lottery. The present situation is not good enough; indeed, it is unacceptable in 21st-century health and social services. It is self-evident that there is an urgent need for NICE to expedite its guidance and quality standards for motor neurone disease.
These poor, fragmented care pathways, including emergency admissions to hospital, together with the lack of access to palliative and respite care services, can double or triple the costs per patient per year from the estimated £200,000 that good care costs. There is a clear imperative to get this right. It is a classic case where what is best for the patient is also good for the taxpayer.
In summary, can we have as a matter of urgency a national clinical lead for neurology, the mandating of the commissioning of neurological conditions and, I stress again, the expediting by NICE of clinical guidance and quality standards for the rarer neurological conditions? I very much look forward to hearing what the noble Baroness will tell us about the way forward and again thank my noble friend Lady Ford for giving us this opportunity to discuss this important matter.
Lord Patel
My Lords, I am pleased to take part in this debate initiated by the noble Baroness, Lady Ford. She should be congratulated; I think that every patient with epilepsy would wish to congratulate her on her perseverance in ensuring that she holds the Government to account on services for patients with epilepsy.
As the noble Baroness, Lady Ford, mentioned, we had a similar debate more than two years ago, so the Minister is in a good position to have prepared her answers. The Question for Short Debate today is:
“To ask Her Majesty’s Government what progress has been made in improving neurological services, and in particular the provision of epilepsy services, in the United Kingdom”.
The last time we had this debate, the Minister ran out of time. It was late at night and she was unable to answer all the questions. I have adopted a different tack today: I shall put the same questions to her again. No doubt her assistants have read the Hansard of the debate then and they have had two years to try to address the issue of poor-quality care for patients with epilepsy. To remind her of what was said, I shall pose the same questions again.
To give some background, if the quality of services provided for people with epilepsy were measured on the basis of outcomes—that is, measured by appropriate diagnosis, appropriate and timely treatment, the education of patients and carers and avoidable deaths—the service currently provided would be regarded as a total failure. The Minister may contradict me by citing hard facts—not processes, because it is easy to say that progress is made by citing processes, such as that the Government have asked NICE to develop quality standards. That is good, but, as the noble Lord, Lord MacKenzie, said, quality standards will take some time to produce, be implemented and be audited, only to find that there has been no change. She may suggest that the mandate given to the commissioning board has within it a mandate to improve services related to neurological conditions but that, again, is a process.
I shall confine my comments to the care of children and young people with epilepsy. Epilepsy is the most common neurological condition among children and young people, affecting about one in every 200 of the population; that is, approximately 60,000 young people in total in the UK. On average, there is one child with severe epilepsy in every primary school and five in every secondary school.
Although those national numbers can be calculated, local and regional numbers are not available. If those numbers are not available, how are the commissioning groups to commission services for those children? Clinical guidelines from the National Institute for Health and Clinical Excellence exist, but they are not implemented in many areas. Where they are implemented, it is patchy. That means that children who have had seizures are typically referred to general paediatricians rather than paediatricians with training and expertise in epilepsy. From the very beginning, that makes the outcomes for those children poorer. Misdiagnosis is an issue. Up to 40% of children referred to a specialist clinic are not fully assessed as having epilepsy. If a child is branded as having epilepsy, they carry that diagnosis and treatment for life, so the outcome for those not fully assessed is worse than if they had been assessed as having epilepsy.
About 365 avoidable deaths occur per year of children with epilepsy. The Minister may correct me and tell me what progress has been made, because that is the number that I cited two years ago. If there is progress, that number should have come down—I know the real number, by the way. I look forward to hearing that.
I come to the five questions that I raised. They related to the campaign conducted by the National Centre for Young People with Epilepsy, which suggested 10 levers that could improve services for children with epilepsy—so two and a half years ago there was already help for the Government to have some idea of how to improve services. They were that NHS commissioners should know the number of children and young people with epilepsy in their area; the level of resources that they have in place to support these children and young people; the waiting times faced by children and young people with epilepsy for initial appointments, diagnosis, treatment and tertiary assessment; and the current perceptions of children, young people and their parents of epilepsy services. They also include the need for NHS commissioners to adopt one or more care pathways for children and young people with epilepsy; the need to ensure that they are seen by paediatricians with training and expertise in epilepsy; an easy-to-use and efficient process for referring children and young people to specialist epilepsy services; the need to ensure that every child or young person with epilepsy is offered a care plan; and the need for children or young adults with epilepsy to have their case reviewed at least once a year by a health professional with expertise and training in the epilepsies.
Those levers were based on National Institute for Health and Clinical Excellence guidelines and were therefore mandatory, so it ought to be easy to measure the progress against those indicators. I very much look forward to the Minister answering this time, because she will not run out of time today.
Baroness Gale
My Lords, I congratulate my noble friend Lady Ford on securing this important debate tonight. I declare an interest as I chair the All-Party Parliamentary Group on Parkinson’s. Approximately 127,000 people in the UK live with Parkinson’s and rely on the support provided by the neurological services to help them manage with the debilitating effects of that condition. Neurological services in the UK are not working as best they could to serve the people who have neurological conditions. This is despite the introduction of the National Service Framework for long-term conditions in 2005.
When the National Audit Office published its report on services for people with neurological conditions in 2011, it found that although waiting times for inpatient and outpatient neurology had improved, the NSF for long-term conditions had not delivered for people with neurological conditions. The report found that there had been a decline in quality services, despite an increase in health spending on neurological conditions of 38% in real terms, from £2.1 billion in 2006-07 to £2.9 billion in 2009-10. The NAO report identified a number of problems including delays in receiving a diagnosis, a lack of access to information and care that is fragmented and poorly co-ordinated.
The report also found that the Department of Health had not put in place specific arrangements for monitoring how the NSF for long-term conditions was implemented. As a result, it was unable to hold local commissioners to account for implementation because no national monitoring of its impact had taken place.
Following the NAO’s report, the Public Accounts Committee conducted its own inquiry into neurological services and published its report in March 2012. It made a number of recommendations, including one that a national clinical director of neurology should be appointed to provide clear national leadership. Other noble Lords have called for this tonight, so I hope that the Minister will take that seriously. It is disappointing that the Government rejected a number of the recommendations, including the call for a national clinical director for neurology. The Government agreed to adopt some of the recommendations, including developing a data set for neurology and ensuring that NICE develops a quality standard for neurological conditions.
In the new structure, the NHS Commissioning Board has appointed directors to the specific domain outcomes. This means that neurological conditions are considered under both domain one, reducing avoidable death, and domain two, long-term conditions. These are extremely large areas for the appointed directors to consider, and there is concern that neurological conditions will not receive the appropriate focus that they require.
There is a similar lack of prioritisation within the new structure of the NHS when it comes to appropriate outcomes and indicators for neurology. There are 44 indicators that have been published for the Commissioning Outcomes Framework, which will be used by the NHS Commissioning Board to hold clinical commissioning groups to account. While there are indicators specifically for dementia and stroke and one for epilepsy in under-19s, the only indicators relevant to neurology apply to all long-term conditions. This is further compounded by the fact that the NHS Outcomes Framework, which will be used to hold the NHS Commissioning Board to account, does not have any indicators specific to neurology.
The NHS Commissioning Board has acknowledged the need to improve services for specific conditions at a national level and has therefore introduced strategic clinical networks, one of which is for mental health, dementia and neurological conditions, to support and advise clinical commissioning groups. There is great urgency for a quality standard to be developed for both Parkinson’s and for neurological services, as identified in both the National Audit Office and the Public Accounts Committee reports.
A crucial part of ensuring that services are appropriately developed and improved is the use of accurate and up-to-date data to make decisions. It is encouraging that an appropriate database for neurology will be developed. However, there is real concern about how the data will be collected. Sir David Nicholson feels that data should be collected from voluntary sector organisations that represent patients with neurological conditions. While organisations like Parkinson’s UK can contribute to these data sets, the Government cannot rely solely on voluntary organisations to provide a robust and accurate data set.
The lack of specific leadership means that neurology will not receive the prioritisation that it needs to make the clearly and repeatedly identified and much needed improvements. The lack of specific outcomes and indicators suggests that neurology may be neglected for areas that do have specific targets. The lack of a comprehensive data set means that it will be impossible to get even a baseline understanding of what is needed to bring about these improvements.
I will put some questions to the Minister. Will she give assurances that people with neurological conditions will see the much needed improvement in neurology services? Can she give assurances that neurological conditions such as Parkinson’s will be appropriately prioritised within the new structure? How and when will the data set for neurology be developed, and what steps will be taken to ensure that it will be suitable, accurate and comprehensive so that it takes account of everyone living with a neurological condition? Will she provide clarity about when the quality standards for Parkinson’s and for neurological conditions will begin to be developed and when they are likely to be implemented? I look forward to the Minister’s response.
The Countess of Mar
My Lords, like other speakers, I am grateful to the noble Baroness, Lady Ford, for raising this subject today. She has asked several very valid questions, as have other speakers, and I hope that the Minister will be able to answer them all.
While the noble Baroness, Lady Ford, has specified epilepsy services in her Question, I realise that she is aware that epilepsy is far from being the only neurological service that has inadequacies. For many years, I have worked with people with ME, also known as CFS/ME. I am chairman of Forward-ME, vice-chair of the All-Party Parliamentary Group on ME and patron of a number of ME charities. Forward-ME is a member of the Neurological Alliance.
I have been assured that Her Majesty’s Government accept the WHO’s categorisation of ME as a neurological condition. The CMO report of 2002 described it as a “genuine illness” which,
“imposes a substantial burden on the health of the UK population”.
The NICE guideline of 2007 stated that:
“The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions”.
Yet there is no provision to examine the neurological aspects of this illness. Patients are simply allocated to either the CFS/ME group, where they are offered psychological therapies, or to various ad hoc diagnostic categories containing patients with neurological symptoms of unknown aetiology. In practice, these can be considered dustbins where no further investigations are considered necessary.
After the Chief Medical Officer’s report on CFS/ME in 2002, £8.5 million was allocated to setting up specialist ME centres. Some of the centres have closed because of a lack of funding. Others continue to operate but are somewhat constricted by the view that the only scientifically validated treatment for the condition is a combination of cognitive behaviour therapy and guided exercise training—CBT and GET. In fact, the much trumpeted PACE trials, which cost the taxpayer some £5 million and were intended to demonstrate the effectiveness of these so-called treatments, did no such thing. There is no indication in the trial results that one single person fully recovered after a year of CBT and GET. There is no indication that any who were not working went back to work or, in fact, that there was more than a very modest improvement in those whose health was deemed to have improved.
I would like to be able to go into the facts behind this research in more detail, but this is not the occasion. However, I must say that the spin on the results has had a very deleterious effect on the public perception of the illness and on the provision of health and social care for people with ME.
What is happening to these frequently very sick individuals? There is still a great deal of scepticism surrounding the reality of this illness, despite pronouncements from government, the CMO and NICE. It is acknowledged that if the condition is caught in the early stages and dealt with conservatively, it can improve and patients can recover. Instead, patients and, particularly, children are pushed by medical practitioners or, in the case of children, by teachers, social workers and carers, to keep going to work or school on the basis that it is good for them, until they collapse and what was a mild, treatable condition becomes chronic and untreatable. They are then encouraged to undertake programmes of cognitive behaviour therapy and guided exercise training which, at best, may help them to cope with their illness or, at worst, may exacerbate their symptoms, and they are blamed for not wanting to get better.
The Neurological Alliance is concerned that for clinical commissioning groups which cover relatively small population areas, it will not be cost-effective to commission services for less common conditions. I am particularly concerned about ME because GPs will do the commissioning. The Neurological Alliance suggests that the NHS Commissioning Board should monitor the observance and development of collaborative arrangements to prevent what we have come to know as a postcode lottery.
I have spoken about the poor levels of understanding of ME among health and social care professionals. This runs through much of neurology. Lyme disease, for example, is often mistaken for ME, and no treatment is offered as a result, yet with simple antibiotic treatment, Lyme disease can be cured. There is a need to equip properly commissioners in order to address successfully the legacy of neglect which has resulted from the complexity and relative rarity of most neurological conditions. There is a need for a national neurology strategy, as other speakers have said, dedicated national leadership and mandatory quality, accountability and incentive mechanisms.
The Neurological Alliance recognises that cross-cutting initiatives can help to support, develop and enhance services for people with long-term conditions, but it is concerned that the NHS Commissioning Board takes only a generic approach to certain long-term conditions while giving particular attention to others and that commissioners’ priorities will be weighted in favour of areas given a profile. Will the Minister say what guarantees there are that patients with less well recognised conditions, or conditions such as ME and Lyme disease, will be given equal treatment?
NICE, the Department of Health and the National Quality Board have yet to establish how they will prioritise the development of more than 160 quality standards. This will have the effect of prolonging neglect in areas without NICE-accredited guidance— ME is an exception as there is guidance—leaving commissioners unsupported in what are often the most complex and challenging areas. As other speakers have already asked, is the Minister able to enlighten the House on the likely progress?
Baroness Wheeler
My Lords, I too would like to thank my noble friend Lady Ford for initiating this debate. Like others, I pay tribute to her work as honorary president of Epilepsy Action and as a campaigner for improved services for people with neurological conditions. As usual, we were fortunate in this debate to have contributions from noble Lords with huge experience and expertise in this field, either as medical experts themselves or from working with health and social care professionals and expert organisations, institutions and community groups that provide such vital support for patients, clients and their carers. The debate is very valuable, because we know that we need a more holistic approach to the provision of neurological services if the barriers to progress are to be overcome and large-scale, consistent improvements are to be made at the urgent pace necessary.
Noble Lords have spelt out the facts and figures, issues and concerns very comprehensively, covering many of the specific conditions. On epilepsy, my noble friend Lady Ford drew a wide-ranging picture of the challenges to improving services and of what could be achieved given the political will to make those improvements happen. Both the noble Baroness, Lady Masham, and my noble friend Lord MacKenzie spoke of motor neurone disease—my noble friend referring to our wonderful mutual friend and work colleague who succumbed to this terrible disease, which kills an increasing number of people year on year. My noble friend Lady Gale focused particularly on Parkinson’s disease. The stark fact is that every hour, someone in the UK is told that they have this degenerating disease. The noble Lord, Lord Patel, asked some key questions about the real progress being made since the last debate, and I look forward to the Minister’s response to them.
I thank the Neurological Alliance, Epilepsy Action, the MND Association, Parkinson’s UK and the Sue Ryder charity for their excellent briefings for this debate. It is clear that much still needs to be done to allay the fear and confusion among people with neurological conditions, staff and their carers and the organisations providing support and care for them about how the new NHS structures will work, particularly the process and outcome of commissioning for neurological conditions across health and social care.
The two recent debates in your Lordships’ House on epilepsy and long-term neurological conditions and the important role played by the NHS and social care allied health professionals both took place in the early days of this Government, before we began on our marathon deliberations on the Health and Social Care Bill. Substantial reductions in both NHS and social care resources are starting to have a major impact. There is massive upheaval in the NHS as the new structures come in. Many CCGs are still in the early stages of development and are only just beginning to decide how commissioning will take place in their areas. We know that, despite Government denials, the NHS is having to make substantial cuts in resources that have already led to the loss of 6,000 nurses—including the deletion of specialised nursing posts—and the closure of many services.
In social care, many local authorities have had to make dramatic cuts to services and do not have systems in place to cope with the scale and quality of care that is needed. The recent Sue Ryder report on social care, The Forgotten Millions, spells this out quite vividly. This found that only 10% of local authorities had an agreed commissioning strategy for people with neurological conditions and only 6% categorised all specific neurological conditions.
I would quickly like to pick up on some common themes from today’s debate, starting with the issue of preventable early deaths. In epilepsy, for example, estimates show that one in three deaths is avoidable and that mortality is two to three times more than in the general population. We saw last week the publication of the Government’s NHS mandate, promising “measurable progress” against the NHS outcomes framework, rather than specific targets to reduce premature deaths or enhance the quality of life for people with long-term conditions. Will the Minister tell us, for example, how progress in reducing the number of avoidable deaths of people dying from epilepsy as a result of late diagnosis or misdiagnosis is to be measured across the two NHS outcomes domains?
Last week, my noble friend Lord Hunt expressed his concerns that the mandate was a wish list. I see that the Independent echoed this sentiment, describing it as,
“worryingly short on specifics and suspiciously free of concrete commitments”,
as well as giving,
“the unmistakable sense of a Minister expertly ensuring that he would not be blamed for any failings come the election”.
Perish the thought.
Secondly, noble Lords have underlined the need for expert commissioning for services, involving those with knowledge and experience of the treatment and nursing and care needs of patients and clients. Clarity over how services are to be commissioned in the future is urgently needed. During the mandate debate, we were promised regulations on exactly what “conditions”, “specialised conditions” and “highly specialised conditions” are. It is hard to see how commissioning planning either at national Commissioning Board level or CCG level can proceed effectively without the Government being clear and definitive about this. Will the Minister tell us when we can expect the regulations? Will they spell out exactly how the Commissioning Board is to provide leadership and direction on this matter?
Thirdly, there is evidence that the number of specialist nurses for neurological conditions is diminishing, not increasing—this when their role and cost-effectiveness is widely acknowledged and recognised. Parkinson’s, motor neurone, MS and epilepsy nurses, for example, make a huge difference by being a focal point of advice and support for patients and their carers; they signpost and provide important access to a range of therapies and other services.
With their support, people stay independent for longer, are better able to manage their own conditions, and the number of unnecessary hospital and care home admissions is reduced.
However, we know that we will be told by the Minister that provision is down to decisions made by local CCGs, hospitals and local authorities. Does the Minister accept that the provision of specialist nurses is an essential element of care for people with specific neurological conditions, including dementia and stroke? What action will the Government be taking to ensure that the number of posts is maintained and increased?
In the time left, I should like to highlight the often forgotten but vital importance of effective and dignified continence care for people with long-term conditions and its need to be integrated into care and treatment pathways. The noble Baroness, Lady Masham, touched on that issue. As I have stressed previously, this requires specialist knowledge and understanding of the different needs of continence care in primary and secondary care settings, and a joined-up approach across the full care pathway. We know that the system is too often slanted towards containment through pads and catheters rather than assessment for treating incontinence. We also know that these types of services have been undercommissioned in the past. Is the Minister confident that CCGs and social care will have the specialist knowledge to ensure effective and consistent commissioning of this service? What work has been undertaken by the Department of Health on this issue?
Finally, the need for an integrated, overall strategy for neurological diseases, which joins up and integrates provision with that for the higher profile conditions such as dementia and stroke, has been underlined. Does the Minister accept that the NHS Commissioning Board needs to show leadership on this issue, as called for by the report published by the Commons Public Accounts Committee earlier this year? Getting back to the NHS mandate, will she spell out for those of us who are still very confused how Ministers will account to Parliament over performance of the mandate generally and the provision of services for neurological diseases in particular?
Baroness Northover
My Lords, like other noble Lords, I pay tribute to the noble Baroness, Lady Ford, for tabling this Motion and for her very effective introduction. I know how important this subject is to her. I am also very well aware of her excellent work with the All-Party Parliamentary Group on Epilepsy and with Epilepsy Action to improve care and support for people living with this condition. Like others, I must declare an interest, as I did two years ago, that I have two close relatives living with epilepsy.
As ever, this has been an extremely well informed and wide-ranging debate, which has raised issues across a range of neurological conditions. In November 2010 I was in the fortunate position to be able to answer an equally illuminating debate put down by the noble Baroness, Lady Ford, to which she and the noble Lord, Lord Patel, referred. I know that she has been somewhat busy with one or two things since then, including the Olympics, but I am glad that we are returning to putting an emphasis on this issue.
I assure the noble Lord, Lord Patel, that, in being briefed on this subject, one of the first things that I did was to ask what I had promised two years ago and what had been delivered, and I hope that I can provide some reassurance. I cannot guarantee that I will not overrun, but if I do not answer all the questions asked by noble Lords—there have been a multitude of them—then I will write to them.
This evening, we have heard that the challenge posed by neurological conditions is huge. Taken together, they are common: more than 10 million people in the UK live with such a condition. As noble Lords have indicated, they can give rise to complex needs that require support from a wide range of professionals. They also can change people’s lives profoundly. We have heard that neurological conditions have not always been well served in recent years, which, once again, as it was two years ago, was reflected in many of the speeches tonight.
Since then, the Public Accounts Committee has reported on neurological services, and the noble Baroness, Lady Ford, and others made reference to that. That report, which was published earlier this year, clearly argued that we need to do more to improve the quality of services. We have already responded to that report and we take its recommendations very seriously. Some of the issues that were flagged up had been flagged up before, and work is already under way to improve neurology services.
As noble Lords well know, it has been argued for years that better integration between health and social care is vital in this area, as in so many others. That is something that we are working hard to achieve; my honourable friend Norman Lamb has it at the top of his agenda. Better integration of health and social care offers a real opportunity to improve care and support for people with complex needs.
The noble Baroness, Lady Ford, and others made reference to the current changes in the health service. Locally, joint health and well-being strategies will, as noble Lords know, set out how local commissioners will work together to deliver the best possible outcomes for their communities. Health and well-being boards will bring together local partners to address the wider determinants of health such as education, transport and housing. So there are new opportunities there.
The Health and Social Care Act 2012, the outcomes frameworks for the NHS, adult social care and public health, the NHS constitution, the mandate we have just heard about and the draft Care & Support Bill all emphasise how collaboration between local government and the NHS is crucial to the future success of health and care systems locally. We are working to identify barriers to integration—those who were at the King’s Fund breakfast the other day will have heard how people across the spectrum are seeking to do that—and the means to encourage integration, which will seek to ensure that the patient is the focus, whatever complex needs they have.
Integrated care will also be the key theme of the outcomes strategy for long-term conditions that we are developing. The strategy will take a life view of long-term conditions, looking at issues across the course of a person’s life, and will set out what local government, the NHS, communities and individuals themselves can do to improve outcomes. In addition to integrated care, the strategy will be structured around the goals of early diagnosis—again, noble Lords made reference to that—promoting independence and taking steps to support those with long-term conditions to live as well as possible.
The PAC’s report in particular identified a lack of neurological expertise in developing services. In the current system, clinical networks have been responsible for sustained improvements to particular care pathways or for particular groups of patients. Noble Lords made reference to that too. They have raised standards, supported easier and faster access to services and encouraged the spread of best practice.
We are committed to ensuring that in the new system this way of working and delivering services is maintained, and that we build upon the progress that has been made. In July the NHS Commissioning Board Authority announced the establishment of four new strategic clinical networks, including one covering dementia, mental health and neurology. The network will help to improve outcomes for patients across England by ensuring that the NHS Commissioning Board and clinical commissioning groups have access to expert clinical opinion about the way that care should be planned and delivered.
Quality standards, to which noble Lords have also referred, published by the National Institute for Health and Clinical Excellence, will also play a central role in the new health and care system by providing patients and the public, health and social care professionals, commissioners and service providers with definitions of high-quality health and social care. We have asked NICE to develop a number of quality standards that are neurologically focused. Noble Lords also made reference to them, and I shall come back to them in a minute. These are already in development and, additionally, people with a neurological condition will benefit from cross-cutting quality standards.
I want to try to address a number of noble Lords’ questions at this point. The noble Baroness, Lady Ford, raised a number of specific questions. She asked about individual care plans. I assure her that personalised care planning is already being delivered. She also asked what was happening with regard to quality standards. A clinical guideline on assessment is to be developed, and from this we can develop a generic quality standard.
The noble Baroness asked about the continuation of the PAC recommendations on progress and wanted to know about driving up quality. The mandate to which people have referred emphasises what is important for people with long-term conditions. Irrespective of the nature of that condition, the focus is on how you try to ensure that people with long-term conditions are supported and how they would best manage their conditions. Taking it in a generic way, you try to ensure that you do not exclude other long-term conditions that we have not been talking about this evening, but obviously these ones would be included in that approach.
A number of noble Lords referred to data. The NHS Commissioning Board is working with the Neurological Alliance to develop a data set. It is extremely important that the information is there because, as noble Lords have said, unless you understand the nature of the problem—where you have patients, what treatment they are receiving, and so on—you cannot take forward what you wish to achieve. When I first became involved in this area, I was astonished at the lack of information on particular conditions around the country. That is something that the previous Government, and Governments before them, must take responsibility for. I am not at all surprised that the noble Lord, Lord Darzi, started to try to draw up atlases of diseases and outcomes and suchlike. To me as a former academic, it was astonishing that that kind of information was not there before. I assure noble Lords that this Government are taking that forward, but I would pose a criticism to previous Governments for not having done that basic work.
The noble Baroness, Lady Ford, asked about clinical commissioning groups taking specialised commissioning seriously, as did my noble friend Lady Jolly. It is extremely important. The neurological charities and organisations are providing support in this area, and I welcome that; they are supporting commissioners to understand the complexity of support and services needed, and the Department of Health has funded neurological commissioning support to work with the CCGs. I hope that that will pay dividends.
My noble friend Lady Jolly asked about the national strategy to help with the diagnosis of epilepsy. Quality standards are due for publication in February which will cover referrals to specialists and timely access to diagnostic tests, which we hope will improve things.
The noble Baroness, Lady Masham, asked about MMD guidance and various aspects to do with that, including the development of drugs. The UK rare diseases plan, which will be implemented before the end of 2013, will be looking at drugs for rare diseases and the research needed to bring them to market. She is quite right that, as in developing countries, rare diseases do not bring in the kind of investment that is needed in these areas. That is something that we are looking at.
We continue to review how NICE is taking things forward, and, of course, NICE itself reviews its workload and how it is managing it. Clearly, those who are concerned about other diseases are equally concerned that their NICE proposals are expedited. It is extremely important that NICE carries this forward as rapidly as it can, but it needs to balance that with its other workload. We recognise the importance of specialist nurses—a point made by the noble Baroness, Lady Masham. They help to achieve significant cost savings, and the Royal College of Nursing is at the moment looking at the value of specialist nurses and will help service commissioners in trying to understand what is required and what the workforce needs to be.
The noble Lord, Lord MacKenzie, asked a number of questions, some of which I have dealt with in my previous answers. He wondered whether the PAC recommendations would be revisited. No doubt the noble Baroness, Lady Ford, will have another debate, which I will no doubt answer, but I can say that the PAC has been asked by the National Audit Office to follow up on its report in 2014.
In terms of clinical leadership, the NHS Commissioning Board is determining how to structure national clinical leadership and advice within the board, and further announcements will be made shortly. I note that Dr Martin McShane, who has been appointed as the lead on long-term conditions, met the Neurological Alliance on 12 September, so I hope that that is encouraging to those who are concerned about leadership.
The noble Lord, Lord Patel, raised a number of questions that he had put to me previously. In terms of better services for children, subject to regulations being laid, children’s neuroscience services will be commissioned by the NHS Commissioning Board, which will promote greater consistency. The children’s health outcomes framework, which will be published by Christmas, will support the delivery of better children’s services and better outcomes. The noble Lord asked whether that would be carried over to adults, and I will get back to him about that. With regard to following the NICE guidelines, I remind him that they are advisory, not mandatory. Clinicians are free to adapt the guidelines. However, in a transparent system where those guidelines are known, that, too, puts pressure on the clinicians via the patients and certainly by the specialist organisations, which are clearly so well aware of what is required.
I have talked about the NHS Commissioning Board developing data sets and how astonished I was that they did not exist in a previous era.
The noble Baroness, Lady Gale, asked whether Parkinson’s and other diseases could be prioritised. All conditions will have equal priority under the new system. For those who are concerned about so-called Cinderella conditions, that should be an encouraging answer, although those who feel that the diseases that they are particularly concerned about get a lot of focus already might be a bit concerned. All conditions will have equal priority, so Cinderella conditions should be improved.
I conclude by assuring noble Lords that there is a real commitment within the Government to address the challenges identified this evening, with the support of the NHS Commissioning Board and generally within the health and social care sectors. We recognise that much still needs to be done, but our primary goal is the same: to improve the patient experience and outcomes, and to bring real benefits and real change to the lives of people living with neurological conditions. I am very sure that the NHS Commissioning Board will have heard what noble Lords have said in this debate.