Health: Parkinson’s Disease
(13 years, 11 months ago)
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Baroness Gale
To ask Her Majesty’s Government what is their response to the recommendations of the report of the All-Party Parliamentary Group for Parkinson’s Disease, Please Mind the Gap: Parkinson’s Disease Services Today.
Baroness Gale
My Lords, I declare an interest as chair of the All-Party Group for Parkinson’s Disease and as a member of the charity, Parkinson’s UK. Parkinson’s is a long-term neurological condition and can be hugely debilitating. The fluctuating yet progressive nature of the condition means that symptoms can vary from day to day and even from hour to hour. Access to the right health and social care can make a huge difference to people with Parkinson’s. It can enable them to live a more independent life for longer and preserve dignity and quality of life. With the right support, people can hold down a job and continue to lead a full life. When the necessary complicated medicines regime is carefully managed, symptoms can often be minimised.
In 2009, the All-Party Group for Parkinson’s Disease conducted an inquiry into access to health and social care for people with Parkinson’s, with the support of Parkinson’s UK. I thank the noble Lord, Lord Walton, for his excellent contribution to the inquiry panel. It brought to light stark inequalities in Parkinson’s services across the UK. We found that a postcode lottery dictated people’s chances of receiving the support they need. This included seeing a specialist Parkinson’s nurse, access to professionals such as physiotherapists and speech and language therapists, and ongoing review and rehabilitation. For instance, at that time more than one in four people with Parkinson’s had never seen a Parkinson’s specialist nurse, yet they can cut hospital admissions by 50 per cent. Although the number of nurses has substantially increased since then, mainly due to sustained investment by Parkinson’s UK, it is vital that we do not see numbers fall back to the unacceptable low level. The inquiry found that half of people with Parkinson’s had never seen a physiotherapist, whose treatment can avoid falls and injuries.
Worryingly, new threats to physiotherapy are emerging across the country. Some posts left vacant by retirement are not filled, leaving local people with Parkinson’s without one of their most valued services. The previous Government put in place the national service framework for long-term neurological conditions, which set out key requirements for health and social care. The Department of Health is sending conflicting messages about the future of this framework. When will a decision be made? Can the Minister assure me that, if it goes, it will be replaced by something sufficiently robust?
This brings me to the likely impact of the Government’s health White Paper. Some of the language used by the Government suggests that “localism”, “choice” and “innovation” are more important than equal access to best treatment. Regional difference, we are told, is a good thing, driving up standards through competition. Consider that from the point of view of someone with Parkinson’s, living in an area with no Parkinson’s nurse, little access to a neurologist and no available physiotherapist or speech and language therapist, where people have to argue their case to receive NICE-approved treatments. Meanwhile, in the PCT next door, or perhaps a neighbouring GP consortium, services are much better. This approach simply seems unfair; will it drive up standards?
One area of concern is the decision to give GPs more power over commissioning. Most GPs have limited knowledge and experience of Parkinson’s disease. They typically have just one or two patients with Parkinson’s on their books. With a highly complex condition such as Parkinson’s it is clearly necessary for decisions to be taken at a wider strategic level. Within the new structures outlined in the White Paper, the only way to ensure a comprehensive approach to commissioning high quality Parkinson’s services is for the NHS commissioning board to have responsibility for this and to provide clear and specific commissioning guidance and outcomes for Parkinson’s services. To ensure we have high quality Parkinson’s services, we need specific, evidence-based quality guidelines and outcome measures. In other words, the Government must provide a standard against which patients can measure their service and, if services fall short, there should be robust mechanisms to hold providers and commissioners to account.
What assurances can the Minister offer that patients, including those with disabilities or conditions such as Parkinson’s, will be supported to seek redress in a meaningful way? One idea is that people with long-term conditions should be represented on the proposed health and well-being boards. Can the Minister say something about that?
The provision of moneys for social care is another area of concern. Local authorities say that the £2 billion for social care will fail to plug the hole left by the 28 per cent cuts they are facing over four years, compounded by the pressures of an ageing population. Further, freed from ring-fencing and national audit, there is no guarantee that moneys will be spent as intended. Councils are already cutting back by changing eligibility criteria so that only those with the most critical needs receive support. Many people with Parkinson’s and other conditions already find services inadequate. A resident of Cumbria told our inquiry:
“My only involvement with Social Services was [with] regards to a seat for the bath and I had to wait 16 weeks for this”.
Another strong message from our inquiry was that more needs to be done to support carers. One carer told us:
“It is difficult to put into words the feeling of abandonment and loneliness I feel ... Carers have enough to cope with without the constant battle to get some attention for their loved ones”.
I welcome the Government’s refreshed set of priorities for carers. In particular, PCTs are being given £400 million for carers’ breaks over the next four years, which I hope will benefit some of those who care for people with Parkinson’s and other conditions, often with very little support or respite. Who will ensure that this money is spent as intended? Another concern is that the removal of ring-fencing will make the allocation of carers’ funding to local authorities much more opaque. To ensure transparency, the Government should at least publish the nominal amount each council has received through the carers grants.
Given the current necessity to spend limited funds wisely, in the case of Parkinson’s, quality care is proven to be cost effective. Will the coming changes mean that some areas will lose their Parkinson’s nurses? Research has shown that such nurses can reduce hospital admissions by 66 per cent, which could be saving the NHS in England approximately £7.5 million.
If the Government are committed to reducing health inequalities, I urge the Minister to consider the report of the All-Party Parliamentary Group for Parkinson’s Disease, whose findings are drawn from expert evidence from more than 360 people with Parkinson’s as well as from their carers, health and social care professionals and key organisations. The report finds that huge inequalities exist in access to the care and support that are needed by people with Parkinson’s and by their families and carers. I hope that the Minister will agree that access to the right services should not depend on where people live.
On behalf of everyone affected by the condition, I urge the Minister to do all that he can to ensure that there is a strategic, comprehensive approach to commissioning Parkinson’s services that is underpinned by robust quality standards and by an effective, accessible system that will allow local people to hold services to account. I understand that the NHS commissioning board and GP consortia will have a statutory duty to reduce inequalities in healthcare provision.
My final question to the Minister is how he envisages reducing geographical inequalities in service provision, including for those with Parkinson’s. I look forward to the Minister’s response, and I thank all noble Lords who are taking part in this important debate tonight.
Baroness Hussein-Ece
My Lords, I congratulate the noble Baroness, Lady Gale, on securing the debate. I also pay tribute to the tireless work that she has done in chairing the All-Party Parliamentary Group for Parkinson’s Disease, which is a disease that, like other long-term conditions, can have a devastating impact on patients and their families. As we have heard, one person in every 500 has Parkinson’s, which equates to about 120,000 people in the UK.
Like those who suffer from other progressive neurological conditions, Parkinson’s sufferers and their families are entitled to a standard of care and treatment no matter where they live in the UK. When the national service framework for long-term neurological conditions was published in 2005 after considerable consultation with patients and groups, the framework was very much welcomed because it set out 11 quality standards with the aim of reducing differences in the treatment, care and support for people with long-term conditions—including Parkinson’s disease—to ensure that their care is more accessible and better co-ordinated.
The national service framework applies to health and social care services that work with local agencies involved in supporting people to live independently. Such services include providers of transport, housing, employment, education, benefits and pensions. When the framework was first published, a main target was to reduce emergency bed days by 5 per cent by 2008 through improved care in primary and community settings for people with long-term conditions. As we have heard, there are places in the country where the target has been met successfully—for example, in north Devon, the provision of a Parkinson’s nurse has helped to reduce emergency admissions by 66 per cent—but that has not happened in other places. Will the Minister perhaps comment on the accessibility of such specialist nurses around the country?
Patients with Parkinson’s disease continue to suffer delays in diagnosis and in access to specialist treatment because of appalling gaps in NHS care, as the All-Party Parliamentary Group for Parkinson’s Disease report mentions. The report also found severe inequalities in access to services across the country. At the time, there was a chronic shortage of specialist nurses. The report blames Ministers and health service managers for a lack of leadership on neurological services at national and local level.
Another concern is about access to appropriate services for people living in care homes and for black and minority ethnic groups. Does the Minister have any evidence to suggest that the situation for such people has improved?
In June 2006, the National Institute for Health and Clinical Excellence issued implementation advice to accompany clinical guidelines on diagnosis and management in primary and secondary care settings, in particular for primary care trusts and acute trusts. The advice also set out what support is available to help people with a condition to cope and how to plan for the future, with aims such as establishing individual care packages, establishing lines of communication, building support for the patients and looking out for any complications.
On care plans, which I think are very important, my previous experience from working in the NHS was that many patients were not really aware that the care plan belongs to them—they own it—and that they should have a copy of it. They should be able to take it home and share it with their families and relatives, but that is not always the case. Given that people are now living much longer with these long-term neurological conditions—indeed, people are living longer generally and are therefore more prone to developing such conditions—are care plans being reviewed to take that into account? Are care plans updated regularly? A patient’s needs and conditions will change and vary quite radically over the years, but the care plan might not always be updated to reflect that. That is one of my concerns.
Other problems cited by the all-party group’s report include poor access to therapy services, which has already been mentioned, and a lack of information for patients about what services are available. The limited provision of respite care is also an issue.
The NICE guidelines set out the importance of access to occupational health services and other allied health professionals. The key principle must be that it is important to treat the patient rather than just the condition because everyone is different and everyone has different circumstances. By doing that, we could prevent unnecessary deterioration and thereby reduce the burden on the health and social care system. Is the Minister satisfied that, in line with the NICE guidelines, patients have access to the full range of services, regardless of their postcode?
Finally, I pay tribute to Parkinson’s UK, which has been at the forefront of campaigning for greater research and information on the disease and on treatment and therapies for patients living with Parkinson’s disease.
People with Parkinson’s disease deserve the right to access the essential services that they need, notwithstanding the inevitable budget cuts and other restraints on local authority budgets. There are concerns that the eligibility criteria will be tightened in some councils, as has already happened over the years, and that the criteria will differ from council to council. Does the Minister agree that standards should be set for such eligibility criteria, given that it does not seem fair that the criteria for people living in one borough might be tightened to a greater extent than in another borough next door with the result that people might not be entitled to the level of support in social care services on which they rely?
Baroness Masham of Ilton
My Lords, I thank the noble Baroness, Lady Gale, for bringing this report on Parkinson’s disease to the notice of your Lordships. The noble Baroness is a dedicated chairperson of the All-Party Group for Parkinson’s Disease.
My late husband was diagnosed with Parkinson’s, along with other complicated conditions. He was diagnosed in London but, as we live in North Yorkshire, I found there was a lack of interest in that specialty when I tried to find a consultant in the north. We found one consultant in Leeds, which was a long distance from home, and a very helpful Parkinson’s specialist nurse. That perhaps illustrates from first-hand experience how the specialist care that is needed by people with Parkinson’s is patchy throughout the country, as is stated in the report.
Two years ago, a friend living in the North Yorkshire dales needed the expertise of a consultant with a special interest in Parkinson’s. I was pleased to find such a consultant in Leeds who visited a private hospital in Harrogate. I passed on this information and received a letter from the friend who said that he was very pleased with the consultant, whom he liked and found very helpful. When one has to have complex drugs, it is important that one can have trust and confidence in the consultant who is prescribing the drugs. When I read in the report that there are many people with Parkinson’s who never see a consultant it causes concern, as having expert advice makes all the difference to the patients and their partners or carers.
As I read my Christmas cards this year, I had one which said: “Maureen cannot write this card as she has Parkinson’s”. People with Parkinson’s need the help of expert doctors, nurses, physiotherapists, occupational therapists and speech and language therapists as well as social care. All have a part to play in the patient’s journey while living with Parkinson’s. There is concern among many people involved in patient care and groups of people living with long-term conditions that things may not get better when GP consortia are in charge. Can the Minister say what the terms and conditions of commissioning will be, and what will be the safeguards?
I congratulate Parkinson’s UK on pump-priming nurses for the first two years. I wonder how many trusts take on the services of these specially trained nurses and how many, after two years, do not. The report states that the role played by Parkinson’s disease special nurses in the care of people with Parkinson’s disease was strongly endorsed by submissions from people living with the condition, from carers and from those medical specialists working alongside nurse specialists. Many people with Parkinson’s disease and their carers outlined how Parkinson’s disease nurse specialists provided them with a regular point of contact for advice on all aspects of the condition and for adjusting their complex medication regimes. This service was particularly valued by the group. When individuals did not have access to a nurse specialist, it tended to be identified as the most significant service inadequacy. I should be grateful for the Minister’s views on nurse specialists.
A person with Parkinson’s said in the report:
“The biggest help has been specialist Nurses, bit of a life saver really, could not imagine coping without them”.
There is a great deal to do to make services better for all people living with Parkinson's disease: for those in care homes who are often neglected and for those who find help is not forthcoming or that there is a lack of joined-up working between health and social care. I hope this report will be read and used by many people. I have already sent it to someone in Yorkshire. I hope it will be used by health professionals, many of whom need educating about the needs of people with Parkinson’s disease. I hope that the Minister will help to make services better for these people who really need them.
Lord Harrison
My Lords, I, too, congratulate my noble friend Lady Gale and all her colleagues on Minding the Gap and on producing a groundbreaking contribution to the understanding of Parkinson’s and its effects on people affected by it and on carers. I hope that the noble Earl will spare some of his time to talk about the carers, who have a particularly difficult time in caring for people with such a difficult disease as Parkinson’s. I look forward to the Government’s response and I hope that the fate that befell the multiple sclerosis review will not befall the NICE guidelines for Parkinson’s this year, when the review is taking place. It would be very helpful to have an assurance that will not happen.
The 2011 review, indeed, offers a real opportunity not only to examine the recent evidence on the new drugs and treatments for managing symptoms but to scan the full multidisciplinary range of services provided to Parkinson's people for their present effectiveness. It would be helpful if NICE could include Parkinson's in the list of conditions for which it develops quality standards, because that will help avoid any postcode lottery approach to Parkinson's which undermines the proper national and comprehensive service which my noble friend Lady Gale has already mentioned. Again, I ask: is that possible?
Also, at a time of impending NHS reorganisation, it is imperative that GP consortia, which will be at the centre of change, should also commission services once they have sought expert advice and support from Parkinson’s experts. Third sector organisations such as the Neurological Commissioning Support service, or NCS, should also be fully consulted, especially as they represent a joint initiative of the Mind, the MS Society and Parkinson’s UK. The NCS is best placed to advise GP consortia about people with long-term neurological conditions. I wonder whether we can have an assurance there.
I should, perhaps, mention a local initiative in Chester and North Wales that may qualify as a contribution to the big society espoused by the Government. Last year, with the noble Lords, Lord Wade of Chorlton and Lord Jones, I was present at the launch of a co-operative arrangement between the local MS support centre and the local Parkinson’s branch, of which I am very honoured to be the president. Indeed, we are having our Parkinson’s branch AGM in the MS support centre later on in January. Such collaboration between natural allies should be encouraged as providing added value and not just as a cover for cost-cutting.
However, the more that I have come to understand Parkinson's, the more I have come to understand the central role of the Parkinson’s specialist nurses, on which the two previous speakers commented. Those nurses stand as advisers, advocates and allies of Parkinson’s people between the GP, who seldom has the detailed knowledge, and the consultant, who seldom has sufficient time within the very busy days that occupy them. The importance of the specialist nurse is that Parkinson’s is a shape-shifter of a disease, which requires the prompt attention of expert nurses to match its every deleterious move. Some years ago in Chester our specialist nurse was axed by the local PCT, which was then experiencing financial difficulties. We fear that the new NHS commissioning changes will again imperil our specialist nurse post, which was re-established after the community worked long and hard to finance its future. Indeed, I fear for all 300 of the national team of specialist nurses for Parkinson’s, who are in place and funded by local groups, Parkinson’s UK and local PCTs. Can the noble Earl give us an assurance on maintaining the efficacy of that team?
For people with Parkinson's, maintaining personal mobility is key to leading a normal lifestyle. My local branch, for instance, has just supplied its specialist physiotherapy team with the latest laser-enhanced walking aids for their diagnostic programmes. They cost £150 but work wonders. Any move from specialist nursing to a more generalised provision of nursing will turn off the tap of such innovative approaches. Nurses are crucial advisers when it comes to mobility and passing on best practice. Indeed, one such best practice is the use of Nintendo Wii programmes that now help those who want to maintain their balance by, for instance, using a ski programme that allows you to go down ski slopes. That helps people with Parkinson’s to maintain balance. We should be encouraging all these items.
I shall end on a more amusing note. It is good that Michael J Fox, who is himself a sufferer, continues to pour money into research into Parkinson’s, but I was struck the other day that there is a new romantic comedy doing the rounds called “Love and Other Drugs”. The feature of the film is that Anne Hathaway plays the part of an early Parkinson’s sufferer. She tells us that she has enormous respect for Parkinson’s, which she has learnt about as a result of doing this romantic comedy, and she says that in the throes of a passionate embrace on one occasion she had to simulate a Parkinson’s tremor at the same time. It is interesting that something that is a reality for so many people outside is now beginning to filter in and be represented in films like this romantic comedy.
I commend again the work of the all-party group headed by my noble friend Lady Gale, and I hope that the Minister, who has always had a strong interest in all these issues, is able to give us some promising responses today.
Lord Walton of Detchant
My Lords, in speaking in this important debate I must first declare an interest as a vice-president of Parkinson’s UK, and as a neurologist who has looked after a great many people with Parkinson’s disease in the course of my professional career.
It was in 1817 that James Parkinson, a general practitioner in Hoxton in London, published an essay on the shaking palsy, describing a disease that had previously been known as “paralysis agitans”. As a result of that important essay, the disease eventually became known across the world as “Parkinson’s disease”. The pathology of the disease was well recognised many years ago, largely dependent upon the failure of nerve cells in a part of the brain stem called the substantia nigra. It was in the middle of the previous century that two Viennese pharmacologists discovered that the normal substantia nigra produced an important neurotransmitter called dopamine, and that when these cells degenerated, the dopamine declined. That ultimately resulted in the introduction of a drug, a precursor of dopamine called L-Dopa, or levodopa, which was of course a major development in the treatment of this condition. I had the privilege in the 1960s of conducting and supervising the first controlled trials of treatment in Parkinson’s disease conducted by the Medical Research Council in the UK.
Many new drugs have been developed since that time. Some of them are new precursors; some of them are what are known as dopamine agonists, trying to persuade the cell to produce more endogenous dopamine; and there are many others. The treatment has improved immensely. The side effects of the treatment, however, are substantial. One of the lessons that everyone looking after patients with Parkinson’s disease has learnt is that it is crucial to develop expertise in knowing how to handle that drug therapy—to adjust it according to the on-off periods that occur. This is a matter of great expertise, which is why Parkinson’s patients require the expertise of a well trained neurologist or, at the very least, a well trained geriatrician with neurological training. That is crucial.
There have been crucial developments in research. We now learn of the importance of the alpha-synuclein gene and we note that free radical scavengers play a part in the etiology of this disease. There has even been exciting work done in which foetal nigral neurones have been implanted into the brains of some patients, producing dopamine. The benefits have been substantial but the side effects are great, and more work will have to be done before these forms of treatment become a most effective part of the management of these patients.
I am grateful to the noble Baroness, Lady Gale, because it was a privilege to serve on this inquiry, which she expertly chaired, dealing with the management of patients with Parkinson’s disease and the range of services available across the country. I repeat the first point: neurological assessment and the proper handling of treatment and drug therapy are crucial. However, so too are the services provided by carers, physiotherapists, speech and language therapists, occupational therapists and others. There is no doubt whatever that to have a team of people looking after those with Parkinson’s disease, with a range of expertise, reduces the number of patients who are admitted to hospital for emergency care. That in turn is of great benefit to the National Health Service.
Sadly, though, as the report has demonstrated, the postcode lottery continues; it is alive and well. The range of services across the country is still desperately uneven. We have heard about the 2005 national service framework and the NICE guidelines that were published in 2006 to try to persuade health authorities across the country to provide a standardised range of services for people with Parkinson’s disease, but they have not been universally adhered to.
I have serious concerns about the proposed GP commissioning consortia. I talked to the Secretary of State who said that the specialised commissioning services for this and other neurological problems will be handled by the specialised health commissioning board. I cannot see that a single national board is going to be capable of dealing with all the complexities of the specialised neurological services that Parkinson’s and others require, and I do not see how it will work without some kind of continuing regional services for the commissioning of these services. Whatever the excellence of the general practitioners and the commissioning services of consortia that they produce, I do not believe that this will be adequate to meet the needs of patients with Parkinson’s disease.
It is right that the Government must take action to do what they can to produce uniform national standards of care. Under the health Bill, have the individual care packages and accounts that were proposed by the previous Government made any contribution in the care of patients with Parkinson’s disease? Are the Government taking account of the work of the neurological commissioning support service established by three major charities—the Motor Neurone Disease Association, Parkinson’s UK and the Multiple Sclerosis Society? This body has made several important and far-seeing proposals. It is very important that the Government should take account of its views.
These developments are things that people with Parkinson’s disease and their families deserve. I hope the Government will take full note of what has been said today. I thank again the noble Baroness, Lady Gale, for so expertly chairing this inquiry.
Baroness Thornton
My Lords, I congratulate my noble friend on initiating this debate, and thank her for her commitment to Parkinson’s disease and for chairing the important all-party group’s report. I doubt I shall address a question to the Minister that someone else has not already asked. None the less, as is traditional in your Lordships’ House, I shall continue to speak.
As noble Lords will know, Parkinson’s is a long-term degenerative neurological condition. Symptoms can include stiffness of movement, pain, incontinence and dementia, which fluctuate from day to day, as noble Lords have mentioned, and worsen over time. It has a profound impact on people who have it, their families and their carers. I might be the first person in this debate to mention that one of the key problems with Parkinson’s disease is the stigma that goes with it. People may not recognise that people have Parkinson’s. They might think that they are drunk or that there is something else wrong with them. That is an additional burden that people with Parkinson’s disease have to carry with them.
The background to this debate is the brilliant report Please Mind the Gap, which took evidence from 360 people with Parkinson’s, their carers, health and social care professionals and representatives of public bodies, royal colleges and the Government. It brought to light many of the geographical inequalities in availability of services across the UK.
We know that the timely intervention of a specialist nurse or a physiotherapist and proper access to services can reduce hospital admissions and greatly improve quality of life. We have discussed this. We could substitute many conditions for Parkinson’s disease. We know that is the case. We know, therefore, that getting the provision of services for people with Parkinson’s disease right is not only right but cost effective.
Take, for example, Parkinson’s nurses. As a result of the investment from Parkinson’s UK, which pump-primes nurses for two-year periods and to which I pay the highest tribute, there are more than 300 Parkinson’s nurses. I have to say that I agree with other noble Lords: there must be a question mark over their future. I ask the Minister whether there can be some monitoring of what happens to these nurses. As pressures increase on primary care trusts and reform moves forward, what happens when you lose a Parkinson’s nurse? How many more people are admitted to hospital? The Government need to look at what evidence there is.
The same applies to allied health professionals, such as physiotherapists, occupational therapists, speech and language therapists, psychologists and specialists in neurology. They are all vital in treating Parkinson’s and other neurological conditions. The Minister will not be surprised to hear me ask how such coherent and co-ordinated provision will be made available under the proposed changes to the NHS commissioning structures. Parkinson’s UK is extremely worried that it will mean a worsening of access to Parkinson’s nurses, as well as all the other allied health professionals that are needed. Indeed, Parkinson’s UK reports that it is hearing of posts remaining empty following retirement.
It is clear that proposals to transfer commissioning powers from PCTs to GPs are of great concern, not only to Parkinson’s UK but to many organisations that deal with long-term and complex conditions. I agree with the noble Lord, Lord Walton of Detchant, that there must be a question mark over the ability of an NHS commissioning board to make sure that these services are delivered adequately by GP commissioning when we are not even sure how many GP commissioning boards there will be. One needs to ask: how will those consortia be able to commission the expertise to supply the support for this and the other neurological conditions mentioned by the noble Lord, Lord Walton of Detchant?
How will the Government ensure that the GP consortia involve the third sector in the delivery of these services? This question is being asked not just by Parkinson’s UK. I happened to be at a meeting attended by the Multiple Sclerosis Society and the Motor Neurone Disease Association and they expressed the same concern about the ability of the consortia to commission the right services at the right level at the right time for patients when a doctor may only ever see two patients with Parkinson’s disease as it is such an uncommon disease. We know that you effect change in the NHS through leadership. How can the Government ensure that the leadership for this condition will continue and develop? The NICE guidelines are to be reviewed this year. If the Government do not go ahead with that review and do not come forward with robust guidelines, how will they ensure that the leadership for this condition will be maintained?
The Minister cannot have failed to notice that the same questions have been asked with regard to stroke, diabetes, MS and epilepsy. With all those conditions the same level of anxiety is evident about what the future holds under the proposed changes to the NHS. I am merely amplifying what has already been said but we are getting to the point where we need answers about how these conditions will be managed.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I begin by thanking the noble Baroness, Lady Gale, for tabling this Question for Short Debate. I very much recognise the considerable personal insight that she brings to this subject, not least as chair of the all-party parliamentary group.
Noble Lords have spoken eloquently this evening about Parkinson’s and the devastating impact that it can have. The all-party group’s report paints a compelling picture of the many failings of the health and social care system: limited information for patients and poor access to expert nursing and therapy services, underpinned by a failure to deliver joined-up services. The previous Government produced a number of policy documents designed to improve services and support people with Parkinson’s disease. The National Service Framework for Long-Term Conditions, to which noble Lords have referred, and the NICE clinical guideline are both strong statements, which this Government support. The problem, made clear in this evening’s debate, not least by the noble Lord, Lord Walton, is that all too often the vision of these documents is not put into practice and areas such as Parkinson’s services find themselves at a disadvantage when competing for attention and resources. We want to put that right. Our reforms to the NHS will ensure that patients have far more information about services, more choice about their treatments and more influence over how healthcare is shaped in their community.
Local Health Watch organisations, building on local involvement networks, will ensure that the views and feedback of patients and carers feed into decisions about local health and social care services. Devolving responsibility for commissioning to GP consortia will mean that decision-making is closer to patients and more responsive to their individual needs. The noble Baroness, Lady Gale, is right: we will have to ensure that GP commissioners are ready and have the skills and awareness that they need to take these decisions. The noble Baroness, Lady Thornton, referred to that matter, as did the noble Baroness, Lady Masham.
As noble Lords are aware, poor commissioning is one of the main reasons for the low quality of some Parkinson’s services and the patchwork quilt of standards about which we have heard. I know that some patient groups have expressed concerns about the skills and knowledge of GP commissioners. The key to this will be creating better care pathways. That is my main answer to the noble Lord, Lord Walton, who expressed his scepticism on this score. We will expect consortia to involve relevant health and social care professionals in helping to design care pathways or care packages for those with Parkinson’s that achieve more integrated delivery of care, higher quality and more efficient use of resources. They should also talk with their local authorities, which will play an increasingly important role in co-ordinating care as we move toward joint commissioning and planning through health and well-being boards. There are certainly opportunities for patient groups to contribute to developing GPs’ understanding of the condition and how to commission for it effectively. Regional neurological alliances, to which a number of noble Lords referred, have an important role to play, working with the NHS and councils, to make sure that patient needs are being met locally.
The noble Baroness, Lady Gale, referred to outcomes. The new NHS outcomes framework will help to deliver care that is safer and more effective and provides a better experience for patients. The outcomes and indicators in the NHS outcomes framework have been chosen specifically to capture the full range of NHS responsibilities. Where appropriate, they are not condition specific, but rather seek to capture those outcomes that an individual with any condition would consider important.
In these financially challenging times, it is important that we make the most of the resources available. Parkinson’s services are a good example of where much more can be done and where inadequate services waste resources. With an ageing population, the number of people with Parkinson’s is increasing and, as the Fair Care campaign highlights, the best way to save money is to deliver good-quality Parkinson’s services when and where people need them.
Better, more effective care does not necessarily mean more resources. Doing things differently, good multidisciplinary teamwork, specialist support, early interventions and care planning can all make a significant difference. High-quality information, combined with the right support, is the key to achieving better care, better outcomes and reduced costs. We have been consulting on a new information strategy to improve the range and quality of information available to patients, professionals and the public, to increase transparency and strengthen accountability in the system.
Good social care is vital for people living with Parkinson’s. It enables them and their carers to live the independent life that most of us take for granted. We want to build a social care system that is fair and sustainable—one that reflects individual autonomy and ensures that everybody is treated with dignity and respect. In November, we published our vision for social care, setting the future direction for adult social care in England. The vision looks at the role of social care in contributing to the development of the big society and includes a new leadership role for local councils to improve preventive services and develop community capacity, which is in part an answer to the question posed by the noble Baroness, Lady Thornton—in other words, inspiring and supporting communities to look after themselves. The vision encourages care and support to be delivered in a partnership between individuals, communities, the voluntary sector, the NHS and councils, including wider support services, such as housing.
Carers exemplify the big society. They provide care and support entirely from their own time and resources. In government, we need to reciprocate this commitment with measures that support carers. Last year, we published an update to the National Carers Strategy—Next Steps for the Carers Strategy. It provides a clear plan of action for the next four years, focusing on what will have the biggest impact on carers’ lives.
A number of noble Lords, including the noble Baroness, Lady Gale, my noble friend Lady Hussein-Ece and the noble Baroness, Lady Masham, referred enthusiastically to the role of specialist Parkinson’s nurses. Specialist nurses provide a very important source of support and advice to patients with Parkinson’s disease and enable many patients to manage their condition effectively. It is of course the responsibility of local health bodies to make decisions on the funding of Parkinson’s nursing posts. The Long-Term Conditions Delivery Support Team has, however, developed a guide to writing a business case for epilepsy specialist nurses for commissioners to use in making the case for improving those services. This guide could be adapted to make the case for specialist nurses for other long-term neurological conditions, including Parkinson’s. The new commissioning arrangements will take all the evidence into account in deciding to what extent specialist nursing will be commissioned.
The noble Baroness, Lady Gale, asked whether all areas will retain their levels of Parkinson’s nurses. We think that localism is the best way of holding local organisations to account. These decisions should in the end be made locally and will be influenced by the important inquiry that she has chaired.
The noble Baroness, Lady Gale, and others referred to the national service framework. While the vision of the NSF reflects that of the White Paper, the new NHS architecture, and particularly the arrangements for commissioning, will render somewhat outdated any lessons learnt from the review. Better outcomes for people with long-term neurological conditions will in future be achieved through the NHS outcomes framework. The framework will enable patients to judge the overall performance of the NHS and to hold the Government to account for progress. Through the Long-Term Neurological Conditions Research Initiative, the department has funded the development of Quality Neurology, a comprehensive audit tool for local health and social care economies to use in assessing their current status in meeting the quality requirements of the NSF for long-term conditions.
The noble Lords, Lord Harrison and Lord Walton of Detchant, referred to GP consortia needing to involve the third sector. I have already referred to this issue. The onus is on regional neurological alliances and patient groups to engage with GP consortia in the first instance. Through the then Section 64 scheme, the department funded the Neurological Alliance to establish a network of RNAs across England. The case for developing a quality standard for Parkinson’s disease will be considered as part of the development of the comprehensive library of standards, in line with the plan set out in the White Paper. The longer-term aim is to develop a broad library of quality standards covering the majority of NHS activity.
The noble Baroness, Lady Gale, and my noble friend Lady Hussein-Ece asked about the status of the NSF for long-term conditions. The Government’s health reforms place outcomes at its heart, as I mentioned. That fits very well with the aspirations of the NSF for long-term conditions. The issue is not the delivery mechanism—in other words, the NSF versus the Government’s health reforms—but, rather, ensuring that services for people with a long-term neurological condition achieve the best possible outcomes.
The noble Baroness, Lady Gale, asked how we can ensure that money for carers would be spent as intended. It is for PCTs and, after them, GP consortia to manage their budgets and make decisions about how best to meet the health needs of their local populations, but we are looking at how we can make decision-making more transparent. That includes using the NHS operating framework, which sets out the priorities for the year ahead and makes it clear that breaks for carers are important. The NHS outcomes framework and the outcomes framework for adult social care will also push for clear and unambiguous accountability in this area.
As so often happens, the clock is moving against me. I have much material here to answer every question posed by noble Lords. I apologise that I will not have time to do that in my allocated slot and I will write to all noble Lords with answers. Suffice it to say that, while tonight’s debate has highlighted variations in the quality of care, the fact is that there are some very good examples of Parkinson’s services. In Barnsley, for example, there is an holistic, multidisciplinary service in a range of locations tailored to meet the needs of patients. We need to replicate such models, ensuring that everybody has access to comprehensive services and expert multidisciplinary care. Through our health reforms, we are determined to continue to transform standards and to achieve better outcomes for people with Parkinson’s disease.