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.