The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I thank the noble Lord, Lord Dubs, for tabling this Motion, which has provided for such a richly informative and valuable debate. I know that this subject is close to his heart, as it clearly is to all those who have spoken today. The noble Lord made the observation that neurological conditions have enjoyed an unfairly low public profile, and he is right.
As we have heard from the noble Baroness, Lady Thornton, neurological conditions affect a significant number of people—an estimated 8 million in England. They account for approximately 20 per cent of acute hospital admissions, and are the third most common reason for seeing a GP. We have also heard that, despite the existence of authoritative guidance in the shape of the NSF for long-term conditions and NICE guidance, services continue to fail many people living with a neurological condition.
Change is needed, and through the health reforms currently progressing through this House we want to ensure that we have health outcomes that are among the very best in the world. Effective commissioning is key to delivering high-quality services. Commissioning in the past has been too remote from the patients that it intends to serve. Commissioning decisions made by clinical commissioning groups will be underpinned by clinical insight and knowledge of local healthcare needs.
Our commissioning reforms also recognise the needs of patients for specialised services, with the NHS Commissioning Board commissioning such services in future. Additionally, with low-volume services that fall outside the scope of specialised services, there will be flexibility for commissioning groups to decide how to commission—for example, through collaboration or thorough a lead-commissioner arrangement. Commissioners will need high-quality commissioning support, much of which will come from the voluntary sector. At this point, I join the noble Baroness, Lady Thornton, in acknowledging the work of Neurological Commissioning Support, which is helping to ensure that the real experts—people living with neurological conditions—are at the heart of local decision-making.
Quality standards, developed by NICE, will also be at the heart of the system, providing authoritative statements of high-quality care. They will have real traction within the system, linking with tariffs that will see providers paid more for quality care. Quality standards covering epilepsy services for children and adults have already been referred to NICE for development, and quality standards covering a number of neurological conditions including MS, motor neurone disease and Parkinson’s disease featured in the recent engagement exercise run by the National Quality Board on the proposed areas that will initially make up the library.
The NHS outcomes framework will ensure that commissioners, providers and others are better able to identify those things that can drive up performance in the NHS by providing a focused set of national outcome goals and supporting indicators that patients, the public and Parliament will be able to use to judge the overall progress of the NHS. It will inform the Secretary of State’s mandate to the NHS Commissioning Board and, in turn, to the NHS commissioning framework.
Let me give a few examples of the relevant indicators. In domain 1—preventing people from dying prematurely—the overarching indicator is about mortality from causes considered amenable to healthcare. Epilepsy is one of the conditions where there is room for significant progress. Domain 2—enhancing quality of life for people with long-term conditions—addresses such issues as the proportion of people feeling supported to manage their condition, which is important for people with conditions such as CFS/ME, acquired brain injury, MS and motor neurone disease.
The aim of domain 3—helping people to recover from episodes of ill health or following injury—is to capture information on patients’ journeys through the system. Domain 4—positive experiences of healthcare—will look at such things as patients’ experiences of primary care. Domain 5—treating and caring for people in a safe environment and protecting them from avoidable harm—can, for instance, support better medicines management, which is crucial for people with Parkinson’s disease.
We must also have a much clearer split of responsibility—a sense of joined-up access across the care pathways to deliver a less fragmented and more person-centred approach to planning. Integrated service provision is central to our reform agenda to ensure more joined-up thinking and commissioning on these issues, and one might say that there was never a more relevant area for that than neurological conditions. This is being demonstrated very ably in Nottingham, with its community neurology service, which is providing access to a wide range of professionals—specialist nurses, social workers and allied health professionals—to provide effective support and rehabilitation.
Nursing and the role of specialist nurses has been a strong theme in this afternoon’s debate. The Government recognise the valuable contribution made by nurse specialists. However, it remains our view that local providers must have the freedom to determine their own workforce based on local clinical need. We must remember that commissioners will be commissioning for good outcomes. The commissioning groups, led by clinicians, will recognise that nurse specialists have an essential role in improving outcomes and experiences for patients. Again, Neurological Commissioning Support is already proving a powerful advocate for specialist nurses.
The noble Baroness, Lady Pitkeathley, stressed the role of social care. As she knows, we have set out a broad agenda for reform in social care. We want to see care that is personalised; offers people choice in how their care needs are met; supports carers; has a skilled workforce who provide care and support with compassion and imagination; and offers people the assurances they expect of high-quality care and protection against poor standards and abuse. We have been working with stakeholders to look at the fundamental issues for reform in social care, such as improving quality, developing and assuring the care market, integration with the NHS and wider services, and personalisation.
I turn to some of the questions that were posed in this debate. I suspect that there were rather too many for me to answer now. I will, of course, happily follow them up in writing. The noble Lord, Lord Dubs, set us thinking about how clinical advice will be infused into the NHS. He asked whether there would be a lead for neurological conditions in the department and a long-term conditions strategy. The NHS Commissioning Board will determine the clinical advice and leadership to support the five domains of the outcomes framework to which I referred. That, of course, includes long-term conditions. A long-term conditions strategy is in development. It is in its early stages but it will certainly seek to address a wide range of long-term conditions, including neurological conditions.
The noble Lord asked about a national strategy for neurology. We have approached the task of driving up quality from a different angle. NICE quality standards will be commissioned, and I have already mentioned some of them. The NHS Commissioning Board will be tasked with issuing commissioning guidance based on those standards. Local commissioning to meet the needs of the community will address the domains in the outcomes framework. Health and well-being boards will conduct joint strategic needs assessments and produce health and well-being strategies to make sure that the needs of patients are properly prioritised. Local healthwatch and HealthWatch England will be the patients’ watchdogs and the local and national voices speaking up for patients.
Commissioning by clinical commissioning groups does not mean that individual groups will have to commission every service. They can commission collaboratively, as I have mentioned, if that makes sense for them. Commissioners will be supported by clinical networks advising on single areas of care, and the new clinical senates in each area of the country will provide multiprofessional advice on local commissioning plans.
As regards having an advisory group for neurological conditions within the Commissioning Board, we understand that the board will put in place arrangements for clinical advice. One of the domains in the outcomes framework is concerned with the management of long-term conditions, and it would be natural for the board to reflect that in its structure. As regards a national clinical director for neurology, that will be a decision for the board, but it shares my desire for continuity and for ongoing improvements in the care and support of those living with these conditions.
The noble Baroness, Lady Gale, mentioned the value of clinical audits. I agree with her that they are of considerable value and my department regularly reviews the programme, within what we call HQIP. More than one noble Lord, including the noble Lord, Lord Dubs, and the noble Baroness, Lady Thornton, spoke about the number of neurologists, which is of course important in these complex and specialised areas. At the time of the last NHS workforce census in September 2010, there were 1,139 neurologists and 650 neurosurgeons employed in the NHS in England. To better understand the future demand for medical staff and to develop supply strategies to meet this demand, the Centre for Workforce Intelligence provides an assessment of medical supply and demand by specialty, region and care pathway. In August 2011, the centre published its second report on the medical workforce, which included a series of factsheets for each medical specialty, including neurology.
As we hope and expect from her, the noble Baroness, Lady Pitkeathley, rightly praised the role of carers. As I hope she knows, the Government are committed to supporting carers, who have a higher profile than ever before. We set out our priorities for action over four years, focusing on what will have the biggest impact on carers’ lives, in our document Recognised, Valued and Supported: Next Steps for the Carers Strategy, published just over a year ago. We are currently considering what more we can do for carers in the light of the recommendations made by the Dilnot commission on the funding of care and support, and by the Law Commission on the reform of adult social care. We will set out our full proposals for reform of adult social care in the White Paper in the spring.
As regards continued financial support for carers, we recognise the factors that the noble Baroness mentioned about rising costs of living. This again was a subject that we covered in our carers’ strategy last year. We reinforced some key messages in the NHS operating framework for next year. That reaffirms our commitment to supporting carers, including setting out specific requirements for PCT clusters to plan to support carers. The Government have set out further guidance to PCTs on funding carers’ breaks. The information available to carers is also important, as the noble Baroness emphasised, and the gateway for this is through primary care and the strategy. It is emphasised that primary care should support people who are carers or who fulfil that role, even if they do not identify themselves as such. On the Dilnot report, which we debated at some length, the noble Baroness knows that our engagement exercise to inform the future of social care has just ended. That has been extremely valuable. We will continue to work with leaders from the sector to develop policy proposals for the White Paper.
My noble friend Lady Gardner, the noble Lord, Lord Monks, and others spoke about multiple sclerosis and improving the quality of care for those patients. NICE routinely reviews its published guidance to take account of new evidence. Following consultation with stakeholders, NICE announced on 22 June that it plans to update its clinical guidelines. The review will consider new evidence identified in a number of areas which may change NICE’s current recommendations on the diagnosis and management of MS. I do not have a date, because NICE has not yet confirmed when it expects to issue the updated guidance.
The noble Lord, Lord Monks, asked about treatments. Although we strive to ensure that there is national guidance on the most commonly used medicines and treatments, there will always be instances where decisions have to be made locally. Under the NHS Constitution, patients have the right to expect local decisions on the funding of medicines and treatments to be made rationally, following proper consideration of the evidence. In the case of treatments which are not covered by NICE guidance, the local PCT has to decide whether to fund the treatment, based on an assessment of the available evidence and the patients' circumstances.
The noble Lord referred to Professor Richard's report on the extent and causes of international variations in drug usage. That was an extremely informative exercise. The report outlines a number of explanations for low uptake of certain medicines in this country. One was caution and/or scepticism among some neurologists about the benefits of treatment, including long-term effectiveness and concerns about side-effects, which we should not forget. There is also the fact that guidelines on the use of MS treatments are stricter in the UK than in some other countries—for example, the criteria in other countries for the use of disease-modifying therapies are lower. Those are very expensive treatments and we need to ensure that they are used only when they will achieve real clinical benefit. That is why we rely on NICE for its advice.
The noble Lord, Lord Dubs, mentioned Tysabri. That drug has received a positive recommendation from NICE; therefore, the NHS is required to fund treatment for patients whose clinicians consider they should receive that drug and are within the terms of NICE’s recommendation. If it does not fund it, the department expects the relevant strategic health authority to ensure that action is taken.
The noble Lord, Lord Monks, referred to a new drug called Fingolimod. I understand that NICE is currently appraising use of that drug in treatment of relapsing remitting MS and issued draft guidance on 5 August which does not recommend the drug's use. Since then, the manufacturer has proposed a patient access scheme for the drug, and we have agreed that that can be considered as part of NICE’s appraisal.
I have some lines here on stem cell treatments, which the noble Lord, Lord Dubs, mentioned, but I will write to him on that issue, in the interests of time. The noble Baroness, Lady Masham, and the noble Lord, Lord MacKenzie, referred to the especially distressing condition of motor neurone disease. A standard for motor neurone disease was part of the engagement consultation exercise run by the National Quality Board on the proposed areas that will make up the library of standards.
End-of-life care has featured in the debate—quite rightly. We recognise the need to ensure that the care that people receive at the end of life is compassionate, appropriate and supports the exercise of choice by care users. We confirmed our commitment to improving quality and choice in palliative and end-of-life care in the White Paper published in July last year.
We made a commitment in Liberating the NHS: Greater Choice and Control to move towards a national choice offer to support people’s preferences about how to have a good death. We have emphasised that access to good quality palliative care should not be confined to diseases such as cancer. The end-of-life strategy aims to improve care for all people approaching the end of life and includes people with advanced, progressive illness and the care given to them in all settings.
The noble Baroness, Lady Thornton, spoke about epilepsy. Here, the long-term conditions delivery support team developed a resource pack for the commissioners that brings together relevant documents and information from a variety of sources to support the development of epilepsy services. This includes information for commissioners on avoidable epilepsy-related death, which has been provided by Epilepsy Bereaved, the leading voluntary organisation in the UK working to prevent SUDEP. The NHS outcomes framework offers a number of opportunities for improvements at this area.
Spinal injury was a theme taken up by the noble Baronesses, Lady Hollins and Lady Masham. As they know, eight centres in England provide specialised care and treatment for patients with spinal cord injuries. I agree with the noble Baroness, Lady Hollins, that these centres have a key role, not only in acute care, but throughout the lives of paraplegic and tetraplegic patients.
There are no plans to establish any further specialised centres at this stage. It is currently the responsibility of regional commissioners and the individual centres to ensure that they are able to meet the needs of the populations that they serve.
I will need to write to noble Lords on continuing care, which is another subject that has arisen. I acknowledge that this is a source of concern, but the issue is quite complex. In the present system, eligibility for NHS continuing health care is determined based on individual assessment of need; it is not condition-based. There is a single national framework for determining eligibility but, as I say, this is a subject on which I shall write.
The noble Baronesses, Lady Hollins and Lady Masham, and the noble Lord, Lord MacKenzie of Culkein, spoke about the poor quality of wheelchair services. They are correct, which is why we believe that commissioners should be free to identify where choice and competition could have a role in improving services for patients. It is one of the services selected for Any Qualified Provider. I say to the noble Lord, Lord MacKenzie, that this is a good example of where third-sector organisations and social enterprises could make a real difference. We want to encourage that.
Time has moved against me, despite the fact that I have much more to say. I thank all noble Lords who have spoken. I undertake to follow up all the issues that I have not been able to cover; in particular, I am conscious that I have not addressed the pertinent issues raised by the noble Lord, Lord Macdonald, about dystonia but I shall do so in writing. With that, I thank all noble Lords for what has been a richly interesting and informative debate.