National Service Framework for Long-Term Conditions

HC Deb 22 January 2003 vol 398 cc103-24WH

2 pm

Mr. Mark Todd (South Derbyshire)

First, I shall set out the reasons why I asked for this debate. The proposal is to adopt a national service framework for long-term conditions. That will add to a series of NSFs, the purpose of which is to remove the lottery of care that currently applies to many conditions and circumstances in medical and care planning. I strongly approve of the principle behind the establishment of the NSFs. I am delighted that the Government have chosen this approach, and I am pleased with the initial steps that have been taken. For example, the implementation of the NSF for diabetes has recently begun, and this approach has been taken to the care of older people.

The NSFs are a key part of ensuring that our national health service addresses the needs of all its potential users. They permit a localised response, but clear national standards are established, and any citizen facing a particular circumstance or condition can expect them to be met. The principle behind the NSFs is absolutely right. They are also a mechanism for establishing whether best practice is shared, and for setting out ways in which it can be more widely adopted.

The methodology of NSFs commands partnership. Many of the aspects of care that they address rely not only on the NHS but on the activities of social services, the voluntary sector, carers and the patients themselves. What we are looking for from any NSF is the bringing together of the various parties involved in an individual's care to achieve the best possible outcome.

I particularly welcome this proposal. By their very nature, long-term conditions require complex co-working between different agencies, carers and the patient. That often continues over a long period, as one would expect from the definition of a national service framework. During that time, the care of the patient will need to be changed. The protocols for defining how that change is most efficiently brought about are crucial, and involve the wishes of the patient and the carer. I understand why this NSF has been proposed, and I welcome it.

It is worth recalling the principles behind the establishment of NSFs. In politics—and in health politics—a lot of worthy and substantial documents are produced that add greatly to our knowledge but do not necessarily prompt action. That is not the purpose of NSFs. They are supposed to provide a framework for progress towards set goals within an agreed time scale.

The expectation is that this NSF will be activated in 2005, and that there will be a time scale of 10 years. A key part of the process is that goals are set and achieved within a time scale and with a particular methodology proposed in the NSF. The goals are not wish lists: such an approach should not be part of this NSF.

When the Secretary of State announced the scope of the NSF for long-term conditions, he said: The NSF will have a particular focus on the needs of people with epilepsy, Multiple Sclerosis, Parkinson's Disease, motor neurone disease and other similar conditions. I commend that approach. There is much common ground between many of those conditions, and I shall dwell on the common aspects that should concern us all when we respond to the needs of people with these conditions.

Since the announcement, the approach to be taken has been refined. The focus is on people of working age, on facilitating their continued working, if that is possible, and on implications for people who suffer from several of the conditions listed in the Secretary of State's initial speech. I do not want to cover that now.

One could describe the approach that has been taken as measured. We have not raced away with the establishment of a body of people who will prepare the NSF. That is not a criticism, because it is important to assemble the right people to do the task. An expert external reference group has been put together, and I know of several people on the group. They seem to be well chosen, and it is a good model because it contains clinical specialists, managers from the NHS and other agencies, participants in the voluntary sector and representatives of service users. The group does not contain anyone with an individual disease-specific perspective. That is understandable, because it would be difficult to accommodate all such people who could contribute to the exercise. I assume that part of the group's work will be to ensure that people with a perspective on each disease have input on the preparation of the NSF through the external reference group.

Several generic points about the identified conditions should worry us. Most are neurological conditions. There is a massive resource gap. I would be amazed if most Members of Parliament did not have a constituent who had encountered difficulties getting referred to a neurologist in their local NHS trust. There is an acute difficulty, and there is certainly a painful shortage of people in South Derbyshire with the appropriate skills to diagnose people who suffer from many of the conditions.

The United Kingdom has six neurologists per million head of population. Germany has 12 per million, the Netherlands has 33 per million, Italy has 71 per million and Denmark has 100 per million. One could argue that those statistics are not necessarily precise reflections of skill levels, but they give a clear indication of the shortfall. All our observations as constituency MPs would confirm the shortfall in the first level of skill, which is correctly to diagnose the condition that a person is suffering from.

The second generic point is the identification of a person's need for therapy and the delivery of that care. It is also clear that there is a desperate shortage of physiotherapists in this country, and the welcome attempts by the Government to recruit and train additional physiotherapists have, to date, drawn relatively small yields. I emphasise the need for the Government to deal urgently with that requirement.

A third problem, and one that I would be surprised if hon. Members had not encountered, is the difficulty in finding an occupational therapist to advise on adaptations of living circumstances for many people with such conditions.

Miss Anne Begg (Aberdeen, South)

With many conditions, the problem is not only finding someone to assess the need for adaptations and aids but the speed at which such demands can be delivered. By the time some of my constituents have received the aids for which they have been assessed, their condition has already progressed. Six months' delay is no use if a person has a neurological condition and has only one year's life left.

Mr. Todd

My hon. Friend has made an important point. I was about to deal with that matter, but I am glad that she has raised it. I have referred to the assessment of appropriate adaptations. I imagine that, at present, there are significant waiting lists in many areas for people to be assessed for adaptation of their living circumstances to a level that they can live with in the future. As my hon. Friend rightly said, there is massive difficulty in the delivery of solutions to such problems. That brings to mind the co-ordination of various elements of care support for people with such conditions. There are often huge delays in obtaining adaptations that are necessary for a person's home. As she said, speed is of the essence in some cases. If a response is not rapid, it will be irrelevant. It will be too late to improve the quality of the individual's life. That is clearly a problem that most of us encounter with our constituents, and I am glad to receive my hon. Friend's support.

I am chair of the all-party parliamentary motor neurone disease group. The disease affects about 5,000 people at any one time. It is a progressive, and sometimes rapidly progressive, disease. There is no cure for it. It is fatal. The mechanisms that we put in place to respond to people with neurological conditions face their sharpest test when responding to motor neurone disease. If we can devise approaches that respond effectively to the needs of someone with MND, it is likely that we will achieve a quality of service that is more than acceptable for people with a less progressive condition.

The unique features of motor neurone disease are its rapid progression, which, incidentally, highlights the desperate need for early diagnosis. The early symptoms of the disease are easily confused with several other conditions, but if it is not spotted early, some of the steps that can be taken to improve the quality of the person's life and slow down the progression of the disease cannot be taken. At present, diagnosis can take 17 months, and some people with motor neurone disease could be dead within 12 months of diagnosis. That is a huge part of that person's potential life span in which no effective response can be made by either the national health service or caring agencies.

I have already touched on generic issues. I suggest that the focus should be on early diagnosis and the co-ordination of services to enable a flexible response to progression. My hon. Friend the Member for Aberdeen, South (Miss Begg) rightly said that we must be able to respond to a moving process. We cannot simply say, "We have seen this person and will devise something that will be delivered in three months", because it may not work any longer. We must have a protocol that drives a more urgent response than is currently available.

We must identify particular clinical interventions that work best and promote their wider adoption within the NHS. If there is doubt about whether the approach is the right one, referral should be made to the National Institute for Clinical Excellence to establish whether the best technology is being used to respond to the condition.

Carers should have support frameworks. In my view, the voluntary sector is well established, partly through the crisis of need faced by an individual with a particular condition. I am a strong believer in the voluntary sector co-working with state agencies whenever possible. In any protocol, we should devise a way of making best use of the unique skills, commitment and knowledge of particular diseases gained by people working in the voluntary sector.

We must also recognise that with some diseases the role of the expert patient is critical. I would be surprised if hon. Members had not encountered people in their constituencies who fit this bill. Expert patients gather information from the internet and develop a genuine knowledge of their diseases. Such patients want to contribute to the quality of their care, suggest outcomes and be listened to. We must devise systems in which that can happen. Such systems are less relevant in cases involving rapidly progressing diseases such as MND, but arguably more important for sufferers of Parkinson's disease, which has a longer life cycle.

I understand the relatively recent aversion to targets in the NHS. I have long argued—privately and publicly—for fewer targets that are more focused on critical outcomes in the NHS. I am glad that the Government have adopted that approach. However, I would not want the NSF to become a NICE shelf document in which people share valuable good practice but do not necessarily make solid commitments about how it can be shared and adopted throughout the country. Targets for early diagnosis and mechanisms for establishing quality social services—with a clear model of what is meant by such services locally—should be defined in the document for particular diseases.

It is right that each of the diseases originally listed by the Secretary of State when the NSF was announced should have clear reference in the framework. I would be disappointed if it became a generic document and people said that, somehow or other, all the responses were relevant to all the conditions, because they vary substantially. The document should attempt to highlight the particular needs created by individual conditions, and should seek a clear goal for each of them. I need not dwell on that at considerable length, but there should be clear reference points back to the fact that these diseases were identified at the start.

Some of the more recent statements require a little more reflection. The Minister of State, Department of Health, my hon. Friend the Member for Redditch (Jacqui Smith), made a speech that emphasised the importance of people of working age who suffer from long-term conditions. No one would wish to minimise the importance of that issue. Again. most constituency Members will encounter people who long to have more time to work, even though they suffer from a long-term condition. However, we must accept that the onset of some of these diseases tends to be towards the end, or at the end, of someone's working life. It would therefore be wrong if we set aside the importance of the quality of life of people aged, say, 55 and over, on the basis that they had ceased to be part of the active work force.

I ask the Government to consider that statement further, and to reassure us that it does not suggest that people who are beyond working age should not regard the document as particularly relevant to their concerns. There has been concern that that is suggested.

Most people who suffer from a long-term condition are dependent on benefits. Indeed, I became involved with the Motor Neurone Disease Association as a result of a visit from a person who told me about the extraordinary processes that someone who suffered from MND had to go through to get the disability living allowance. We need clear co-working with the Benefits Agency to meet the expectations about its response to the changing circumstances of people with long-term conditions.

It would be wrong if the document focused purely on the care aspect. The anxiety and stress that is produced by relationships with the Benefits Agency for some of the people who live with these diseases is substantial, so it is important that we get that protocol straight. I recognise that that is a demanding task for the authors of the document. No one in the reference group has that particular brief, but I urge my hon. Friend the Minister to consider carefully how we can bring that element into the NSF.

This is a great opportunity to spread good practice, and there is good practice.

Miss Begg

I am sorry that I cannot stay much longer, for this is a very important debate, but I have to attend a Select Committee. My hon. Friend is talking about good practice. He may be interested to know what Sue Ryder Care is doing in my constituency for people with Huntington's disease. It involves a new model of care for people who are end stage. Currently, most young chronically sick people end their lives on geriatric wards in hospitals or in nursing homes, but Sue Ryder Care is developing a new model whereby they can live with all the necessary care, but in a home environment—in small houses within a bigger complex.

I hope that other people and charities working with those suffering from diseases such as motor neurone disease and Parkinson's disease will consider the model that Sue Ryder Care has developed in Aberdeen and Kincorth, which may be a model for the future. It is expensive, so my hon. Friend's comments on the benefits system have an important part to play in that regard.

Mr. Todd

I thank my hon. Friend for her comments. I agree that that is certainly one model of care. The key concept that I always emphasise is choice. That is a working framework for many people; others choose different models. We should try to ensure that there is a flexible response.

As I said, this is a great opportunity to improve the quality of care for people who are suffering from some of the most terrible and, sadly, intractable diseases. We should not miss that opportunity. The purpose of calling the debate was to prompt the Government to think all the harder, having taken the welcome step of setting up the NSF, about the quality outcome that we seek from it.

2.24 pm

Mr. Paul Burstow (Sutton and Cheam)

I congratulate the hon. Member for South Derbyshire (Mr. Todd) on securing the debate, not least because when it is read alongside the debate on head injuries that took place in this Chamber yesterday, which was secured by my hon. Friend the Member for Colchester (Bob Russell), we may begin to get a picture of the progress that the Government are or are not making in developing neurological services.

I come to the debate wearing several hats, or with several interests. I am a vice-chair of the all-party disability group and a vice-chair of the all-party multiple sclerosis group. Recently, I was invited to act as a patron of CMT UK, which is a small charity that deals with a neurological condition known as Charcot-Marie-Tooth. CMT is an inherited neuromuscular condition with a range of symptoms that include pain and gastrointestinal, hearing and eyesight problems. In most cases, it has a genetic basis. The charity has raised several issues, some of which pick up on themes in the opening remarks made by the hon. Member for South Derbyshire.

I want to address three issues. The first concerns the capacity of the work force, because I believe that that is fundamental to delivering a national service framework of a standard that we all want, in a time frame that will make a difference to the lives of people today. Secondly, I shall briefly return to the focus of the national service framework and discuss whether the statements that have been made so far address all the issues on which we need to concentrate. Finally, I shall deal with implementation of the national service framework, which is absolutely crucial.

Neurological conditions account for 17 per cent. of visits to general practitioners and almost one in five acute hospital admissions. Studies suggest that 3 million people have a neurological condition of one kind or another. What is interesting about the figures is that the studies on which they are based are often ancient, because we do not have a robust mechanism for gathering data about prevalence. I raised that issue yesterday but did not receive a reply.

In 2001, the British Medical Association proposed to the Government that a health and injury surveillance system should be set up to capture such information so that the Government would be able to plan and commission services on the basis of need. It would be helpful if the Minister would say whether the Government are minded to do that.

One in four of the people who have neurological conditions need daily help with living tasks to remain in their own homes. Among the range of conditions with which the national health service grapples, only heart disease and cancer affect more people.

On work force planning, I understand that the average length of training for a neurologist is six years. On the basis of the numbers in training, there will be fewer than 90 extra trained neurologists by 2006. At present, there are 358 neurology consultants, which is one to 177,000 people. As we have just heard, that is the lowest number of neurologists per head of population anywhere in the western world and way below what the Association of British Neurologists says we need to provide a good-quality neurology service. Indeed, the ABN puts the required figure nearer 950. With just 30 new neurologists coming on stream each year, and given retirements, there will on current trends be 550 more neurologists by 2010. With no retirements, it would take until at least 2020 to hit the ABN's target, which is outside the planning horizons of the national service framework. The figures raise some questions that I hope the Minister will be able to address.

Similar concerns apply for therapy staff and specialist nurses. There has been an increase in the numbers entering training in allied professions, and that is welcome. However, the initial increase in places has been disappointing. For example, the figures show a 1 per cent. increase in the intake of physiotherapist trainees between 2000 and 2001. How is the target of a 59 per cent. increase in NHS physiotherapists to be achieved within the planning period encompassed in the national service framework?

The hon. Member for South Derbyshire referred to the patchiness of provision. I was struck by some recent work undertaken by the Parkinson's Disease Society to garner information about understanding, awareness and expertise of that disease among geriatricians and neurologists. In London, there is apparently one gerontologist, or neurologist with any expertise in Parkinson's disease for every 465,000 people. I suspect that for some of the more rare neurological conditions, that figure would be even worse. That raises concern about how we can ensure that the pathways not just to care but to initial diagnosis can be established robustly and clearly.

I hope that the Government will tell us that they are aware of the problem. Although they are doing much that is to be applauded in recruiting extra staff, it is clear from the figures that I have given that we are well adrift of what is needed to deliver a meaningful national service framework. That takes me on to the questions about the focus of the framework.

Many patients' organisations and neurological research charities share a concern about the statements made so far concerning the intention to focus the national service framework on people of working age and on getting people back to work. Given that neurological conditions tend to be more prevalent among the older population, we need to ensure that the framework addresses their needs, not least because the national service framework for older people addresses only dementia and fails to address any other neurological conditions that impact on older people.

Given that the forthcoming national service framework on children's services also does not address neurological conditions, will the Minister assure us that the framework under discussion will address the needs of children with neurological conditions?

Mrs. Patsy Calton (Cheadle)

Should ME, which particularly affects young people, and autism be considered as two of the long-term conditions?

Mr. Burstow

I am of the view that the key to success with the national service framework is to build its foundations on generic issues. Having said that, and as the hon. Member for South Derbyshire rightly said, one can from that point identify and deal with the unique aspects of a particular condition. Many ME sufferers feel in limbo when it comes to how the NHS deals with their needs. Many are affronted at being sent down the mental health route rather than the neurological route. There is a case to be made for their needs to be addressed in that way, but others may have a different opinion.

The focus of the national service framework should be on promoting independence and quality of life and on supporting carers. Will the Minister clarify whether the framework will cover all ages? If not, will those who have needs but are outside the working population be picked up? How will joined-up services be achieved if the transition points between paediatric and adult services, and adult and geriatric services, are not addressed in the national service framework?

My third and final area of concern is implementation, which has been touched on, but which is important to the success of the national service framework and all such frameworks to come. How will the Department ensure that implementation is achieved in the context of the new devolution? What role will strategic health authorities have in monitoring implementation? Will there be clear targets and milestones, and what feedback mechanisms will be in place between the Department and the strategic health authorities? We need a picture of how the process will work. The early national service frameworks had very clear, robust milestones and targets, and were monitored by the Department. It appears now that some monitoring mechanisms have gone and data are not being collected. Will data be collected under the new system, or are we now talking about guidance?

On a number of occasions I have raised with Ministers—not the Under-Secretary, but others in previous debates—concerns about the national service framework process blighting existing planning and work in the Department and the NHS. I would like to touch on two examples. In 1999, during a debate that I secured on MS, the Minister of State, Department of Health, the right hon. Member for Barrow and Furness (Mr. Hutton), told me that the Department was working on a compendium of good practice for general practitioners and primary care groups in commissioning neurological services. Furthermore, that was regularly trotted out in written answers as evidence that the Government were acting to improve the situation. That was back in 1999. I suspect that the work had been commissioned even before then.

Will the Minister explain why that compendium has never been published? Why does it appear to have been dropped altogether? Surely it would have been a valuable tool for primary care trusts, which as we heard just yesterday will pick up the specialist commissioning role from April 2004. Was any work done on that compendium? Why was it not put into the public domain? Why do we have to wait for the national service framework process to result in that work coming into the public domain and benefiting people with neurological conditions?

The second example concerns assessment of neurology specialist nurses, which is being reviewed by the Department. Numerous written answers have referred to the work that the Department has been doing. Again, it dates back three or four years but has never seen the light of day. Why not? Again, the patchiness of specialist nurse provision is a real issue.

I shall conclude on a number of core issues. My hon. Friend the Member for Torbay (Mr. Sanders), who chairs the all-party group on diabetes, is concerned that there is no ring-fencing for funding to deliver national service frameworks. I hope that the Minister will take that point on board. The first core issue is speed of diagnosis. People must be diagnosed quickly and their health and care needs must be assessed too. Rehabilitation services need to be strengthened. Symptom management is crucial and pain management should be part of it. Patients need to be seen as co-producers of their care. We need to ensure that carers are part of the national service framework. All that rests on a foundation of multi-agency working. Unless the agencies share information, and plan and deliver services together, the experience of the patient will be poorer.

Only if these services are founded on strong common ground will we deliver services that are tailored to the individual's unique circumstances and condition. Neurology has been a Cinderella service for far too long—undervalued, under-resourced and unrecognised. As a result many thousands of people do not get the support they need to enjoy a quality of life that the rest of us expect and have. I hope that the Minister can give some positive responses.

2.36 pm

Phil Hope (Corby)

I congratulate my hon. Friend the Member for South Derbyshire (Mr. Todd) on securing this important debate and on his excellent analysis of the issues of concern. My focus will be on primary headache disorders as another aspect of neurological conditions that could be covered by a national service framework. Primary headache disorders have been misunderstood and under-recognised for far too long. They are often incorrectly diagnosed and inappropriately treated. To put it bluntly, it is time that headache sufferers got taken seriously in this country.

I have to declare an interest. I am a migraine sufferer. I do not have them too frequently, but in creating the all-party group for primary headache disorders I discovered that a great many Members of both Houses are migraine sufferers. Some of them suffer from cluster headaches, which is a particularly severe condition. This newly created group will press hard to move the issue much higher up the health agenda. I am delighted to say that the Migraine Action Association has its headquarters in my constituency. Its chief executive, Ann Turner, has been helpful, along with the Migraine Trust and others, in supporting the all-party group. It has a good website—Migraine.org.uk—and it runs a helpline for those who need support.

Some 60,000 people are members of the Migraine Action Association and the Migraine Trust. They have joined a voluntary organisation because they suffer severe headaches and migraines. That is the extent of the condition. We have heard of the prevalence of other conditions, but that is a huge proportion of the population. Headache UK is an alliance of people who work on headache and who have come together to promote this agenda. I thank them for their support. I welcome the new national service framework for long-term conditions, most of which, as my hon. Friend said, are neurological. The scope of the external reference group's activities has not been finally determined, and there is anxiety about the fact that migraines and severe headaches have not yet been included in the national service framework. I ask the Minister and his colleagues in the Department seriously to consider whether such headaches should be included in the national service framework.

I share hon. Members' concerns that the frameworks should be not just about guidelines and suggestions but about targets and goals, which should be monitored so that we can find out what is being developed. I understand from a meeting held earlier today that it might take five years to create the national service framework, and that it might not be published until 2007. I hope that I am wrong about that. However difficult the task may be, I hope that we can get on with it a lot quicker than that.

I shall explain why I am pressing my case so hard. The facts about headache astonish me, as does the fact that the issue has not been at the top of the agenda. The World Health Organisation has already classified headache as a major health disorder, and 75 per cent. of the UK population suffer from headaches each year. I do not think that there is any other condition that is experienced by 75 per cent. of the population. Migraine, the most common cause of severe headache, has a prevalence of 15 per cent. Roughly one in six people in this country suffer from migraines.

The difference between a headache and a migraine headache is profound. Someone who has never had a migraine headache will not know what migraine sufferers are talking about. Migraine completely wipes people out. They suffer from appalling pain, have trouble with vision, and can do nothing—they cannot go to work or look after their children. They just have to lie down in a darkened room, take whatever works for them, and live with the migraine until it goes away. That is happening to one in six or one in seven people in this country, which means that some 187,000 people on any given day are going through the appalling experience that I have described. About 10 per cent. of schoolchildren get migraines. It does not take much to work out how that affects their studies and their performance at school. Some 60,000 people suffer from cluster headaches. That is a much rarer, but very severe disorder.

Those suffering from migraines cannot go to work or look after their family, or may be absent from school. Up to 3.8 million people feel that they are not in control of their condition. They have migraine, but do not know what to do about it. They have tried treatments, but none of them have worked. Many feel that the treatment on offer is unsatisfactory.

There is also the economic cost of not dealing with headache. It is under the surface, but affects so many people daily. It is estimated that some 270 work days a year per thousand people are lost due to migraines, and an estimated 820 work days a year per thousand people are lost due to tension headaches. That is the huge economic impact of our failure to get to grips with the condition. If we take into account the regular medication needed, the cost of child care, loss of earnings, and the fact that people cannot function properly, the cost to the economy is some £1.5 billion. That is a big sum. It amazes me that people with migraines wake up and get on with their lives. They just cope, yet our country is failing to recognise their plight and the consequences for the economy.

The difficulty within the NHS is that headache remains a low priority. There is limited understanding of headache diagnosis or effective management by health care professionals. There are guidelines and protocols, but they are not very well applied. Up to 30 per cent. of neurology referrals are for headaches. In a Migraine Action Association survey conducted by the organisation in my constituency, 70 per cent. of migraine patients said that they wanted better treatment. Some 31 per cent. of general practitioners—one third—felt that they did not understand their patients' migraine illness, and 45 per cent. of migraine patients needed up to five visits to the doctor before their condition was understood. Some 20 per cent. needed 10 visits to the doctor, until the doctor suddenly understood what the problem was. Those figures are staggering. Clearly, there is an urgent need for better guidelines for treatment and referral.

The NHS Modernisation Board has accepted that neurological conditions are neglected and poorly understood. The National Headache Alliance feels that headache is the most neglected of all the neurological conditions, despite being the one that people get the most. It seems to us that the physical, emotional, social and economic burden of headache is poorly acknowledged compared with other less prevalent neurological conditions. Some 75 per cent. of GPs in this country—three quarters—say that they do not know how to treat migraine, or find treating sufferers difficult. Incorrect treatment and interventions lead to 60 per cent. of referrals going to secondary care headache clinics for chronic headache. That represents 20 per cent. of all referrals to consultant neurologists—so those 20 per cent. of referrals are because the doctor did not know what to do and said, "Oh well, we'd better send you off to the consultant." That is a crazy use of resources, and it should not happen in today's NHS.

People can be knocked out by migraines and left not knowing what they will be like the following day. However, they get other symptoms too, especially depression. If a person gets migraines regularly, it is so appalling that there is nothing more likely to make them feel like giving up.

We do not know the quality of headache services because no one has measured them. The response to demand is pretty ad hoc. We know that services are inadequate and are not cost effective. There are no national or local targets for dealing with migraine, and very little research or auditing has been undertaken. We cannot seem to generate much interest among GPs or neurologists in focusing on and dealing with headache.

Current spending on headache is inadequate, unevenly distributed and poorly managed. That is a damning indictment, and it is time that we did something about it. There is a way forward. Professionals in the field have considered this issue and produced some detailed proposals. The first is inclusion in the national service framework. That would certainly ensure more equality in the delivery of care and in access to the best treatments that are currently available for headache sufferers. I am pleased to be able to draw to the Minister's attention the new guidelines for the management of migraine in primary care that have just been published by a group of professionals—the migraine in primary care advisers group. Those guidelines are going out to everyone in primary care. Those professionals have also produced a shorter guide for the use of clinicians. Hon. Members may be interested in seeing it. A patient guide will also be produced. Those guides are comprehensive and thorough, and show how migraine might be better managed in primary care. I hope that the Minister will give the guides his endorsement. A larger group, the National Headache Alliance, has also produced a summary of how it would like headache services to develop and improve.

I will briefly summarise the key points that have to be addressed. First, we must have better patient education and information, along with support for groups such as the Migraine Trust, the Migraine Action Association and others. As hon. Members have suggested, patients with information can control their care much better. If they do not know what it means to have their condition, how can they control their care?

Secondly, we have to take a multi-disciplinary approach, as hon. Members have said. We need to use the skills of a range of people—GPs, therapists, nurses and pharmacists. Thirdly, it has been suggested that, working to accepted guidelines, each GP should have available a first-line headache service, based on best practice—we need to spread best practice round the country—and evidence-based medicine, so that they can enable individual patients to manage their needs.

To achieve Government targets, we will need to develop specialist headache centres within primary care—either in GP clinics or in primary care trusts. Primary care trusts may have a specialist headache clinic or centre staffed by GPs with a thorough knowledge of particular headache problems. Some might ask, "A clinic just for headaches?" However, when 75 per cent. of the population experience headaches and 60,000 people experience migraines that are so debilitating that they become members of a migraine association trust, having specialist headache centres in every primary healthcare trust is not unrealistic.

In secondary care, there could be headache centres in every region, so that consultants with a specialist interest in headaches in every regional neurology centre could support the primary care centres. People could visit a GP, a specialist headache clinic and a consultant at the end, so their needs could be met where those services are required. At the moment, if a person has migraines they go to the doctor and the result is either a painkiller or a brain tumour—there is nothing in between. That is something of a caricature, but we must provide a range of services for people who experience headaches.

I hope that the debate will mark the start of a step change, whereby the policy makers and the professionals in the NHS—the health care providers, managers and the Department—give significant and proper recognition to the problems presented by migraines and other, sometimes severe, headaches. That issue must go higher up the agenda. Will the Minister ask his colleague the Minister of State, Department of Health, the hon. Member for Redditch (Jacqui Smith), who is responsible for such matters, to receive a delegation from the all-party group on primary headache disorders? We could put our proposals to the Government, we could go through all the issues and concerns and get headaches firmly on the agenda, then the three quarters of the population who have a problem would be convinced that the Government are taking their needs seriously.

2.51 pm

Mr. Alan Campbell (Tynemouth)

It is a pleasure to follow my hon. Friend the Member for Corby (Phil Hope). As a former headache sufferer, I recognise the frustrating picture that he so clearly painted for us. I congratulate my hon. Friend the Member for South Derbyshire (Mr. Todd) on securing the debate and on his introduction to it.

I want to raise some issues regarding neurological conditions that are pertinent to the NSF, and some of the concerns of consultant neurosurgeons at the Newcastle upon Tyne neurosurgical unit, which is the regional centre. I have already drawn some of those concerns to the attention of the Minister of State, Department of Health, the hon. Member for Redditch (Jacqui Smith), to which she has already kindly responded. I would like to take this opportunity to place those concerns on record. Before I do that, I declare a personal interest, having undergone surgery at the Newcastle unit some two and a half years ago. I want to place on record my thanks for the vital work that it did for me and for my family, and to thank it on behalf of the thousands of people across the region whom it helps every year.

The consultant neurosurgeons in Newcastle welcome the principle of the NFS, but they have some concerns and they want to ensure, as we all do, that it achieves what it is intended to achieve. Those consultants are concerned that the framework, as it stands, focuses rather narrowly on services for people with the chronic neurological diseases and long-term impairments that follow a brain or spinal injury. They would also like to draw attention to the importance of the acute services. The initial treatment may involve an operation, and there may be long-term consequences. They cite head injuries, vascular disease, brain tumours, or, as in my case, a tumour on the spinal cord. In such situations, timely and effective neurosurgical services are crucial in preventing long-term neurological disabilities. They are concerned that, if there is no proper provision of acute neurological services, that will frustrate the aims of the NHS framework in seeking to reduce the long-term burden of neurological disease. I am sure that the bureaucrats in the Department and the Treasury will be keen to note the fact that, if we provide first-class acute neurological services, we could reduce the need for support and help later on. That would represent good value for money.

The consultants asked for the framework to incorporate the requirements of neurosurgery as a whole, including acute neurosurgery. Will the Minister tell us when we should expect the appointment of the external reference group? Will he ensure that the Society of British Neurological Surgeons is involved at every stage of the development of the framework? Will he also ensure that the needs of people with neurological conditions are met at all stages of their illness, including the acute stage?

I want the NSFs to succeed. National standards and investment are the two most important aspects of NHS modernisation. Long-term conditions such as neurological illness often show the NHS at its best, not least in its aspirations for people in its care. Such conditions also underline the importance of ensuring continuing investment through collective funding via the public purse. If that investment is reduced by some arbitrary figure, such as 20 per cent., some of the most vulnerable people will be put at further risk.

I recognise that long-term conditions, such as those we have discussed today, make a nonsense of the idea of a health care system that is largely or wholly based on private insurance. If insured people develop neurological conditions, they struggle to have their insurance policies renewed. If people have such a condition and seek insurance, they can forget it, because they will not be able to get insurance. We need proper investment and national standards, and I believe that we are now getting them. However, we must get our actions right.

2.56 pm

Dr. Evan Harris (Oxford, West and Abingdon)

We should express our gratitude to the hon. Member for South Derbyshire (Mr. Todd) for introducing this debate. He has been very active in the past week with the food supplement directive and the traditional herbal medicines directive. He has followed his interest in other matters in the House as well as preparing for today's debate. He is certainly earning his wage this week. I am sure that his staff are also working frenetically.

I shall raise some general concerns about the national service framework in order to paint a picture, and I shall question the Minister about his approach to NSFs and that already taken by the Government. I shall highlight concerns about the process, and shall ask the Minister for solutions. I shall also respond to issues raised in the debate so far.

The Liberal Democrats believe that national service frameworks are doubly worthwhile. They are worthwhile in their own right, because they identify good practice, standards, treatment mechanisms and approaches, but also because the standards in the NSFs, in so far as they are targets, are so much more evidence-based, rational and clinically-focused than some of the other targets in the NHS.

Indeed, some of the targets that the Government have imposed on the NHS give the setting of minimum standards and progress benchmarks a bad name. In many cases—almost invariably outside the NSF—there is no evidence that achieving targets actually improves patient outcomes in the long term. They are not necessarily rational, nor do they solve the problem of the distortion of resource allocation without good purpose and clinical priority, when the target is treated rather than the patient.

It is much harder to make those complaints about the standards set in NSFs. Some of the standards in the coronary heart disease programme have proved to be useful in levering up performance, because they involve prevention and primary care. However, they also involve the levering-up of expenditure on drug budgets.

The NSF approach is welcome, but the Government must recognise that hon. Members from all parties are aware of problems that have arisen as a consequence of the NSF programme. The Government owe it to the House to ensure that they recognise the problems and ameliorate the situation. The first problem is the blight that is almost inevitable when waiting for the publication of a national service framework. It is well known that primary care trusts and health authority commissioners were loth to commission and develop new services when an NSF was in the offing, because they thought that they may be taking the wrong action. Competing priorities gave them an excuse to wait. We experience such blight with the appraisal of drugs by the National Institute for Clinical Excellence and in the development of NSFs.

The timetable and the speed at which NICE makes its determinations is somewhat swifter—probably because of necessity—than that for the NSFs, which are a bigger piece of work. Nevertheless, the Government must recognise that the speed at which NSFs are established has big implications for the services that are blighted because people are waiting for the outcome of the NSF. An NSF was announced in February 2001, but the chair of the external reference group—which, to the outside world, is a sign of work being done—ppointed only in October 2002. As the hon. Member for Corby (Phil Hope) said, the time scale is already long, and people worry that it may be even longer. The treatment of conditions such as motor neurone disease, which were first thought to be included in the NSF or in its recommendations, is likely to suffer as a result of this blight. It will be doubly disappointing if it is not included in the NSF.

The second problem is the tyranny of the appraised. That is inevitable to a certain extent, but it is a real problem. A national service framework has standards against which commissioners and providers are measured, and resources are applied to the area. When resources are limited or the increase in expenditure to meet standards is greater than the share of the growth money that that area of expenditure would receive, resources are pulled from elsewhere, such as areas that do not yet have an NSF—often it is not even in sight. That has been a worry. The priority given to mental health, coronary heart disease, services for older people and diabetes is at the expense of clinical investment in long-term medical conditions, for which resources are limited. The Government must recognise that. Support is needed for those people working in increasingly tight financial circumstances, even though there have now been reasonably generous increases in overall health expenditure.

The third problem is that target setting, even within NSFs, is an inexact science. There is a risk that unrealistic targets are set, which creates doom and gloom, and heavy pressure is put on expenditure to try to meet them. Some obvious targets merely go with the flow and follow long-term trends. They do not represent a challenge to people, so services are not improved. In a given area, targets will be met without the service necessarily being improved when it needs to be.

The fourth problem that surrounds NSFs is the need to ensure that there is adequate user input. The NSF provides an opportunity for user input. Obviously, that is easier for some conditions than for others, but for long-term medical conditions the opportunity to use the expertise of a patient group that has experience of the illness and knows how it affects people is significant. Expectations of user input into the NSF are raised, but are sometimes not met. Many of our constituents come to us with such concerns. I shall now deal with the question whether there is a rational programme of NSFs or whether goal posts are shifted at inappropriate times. My hon. Friend the Member for Sutton and Cheam (Mr. Burstow) said that the working age focus of a particular NSF was announced some time after the publication of the NSF for older people, so there was no opportunity to pick up the slack in fields that might not get as much attention as it was once thought they would. Such problems are significant for NSFs generally, and I would be grateful if the Minister accepted that they exist. I realise that some of those problems are an inevitable part of the process, but I hope that we can agree that the situation needs to be ameliorated.

My hon. Friend mentioned important work force issues. If, as we expect, this NSF raises standards, as other NSFs have, additional staff will be needed. Staff take a long time to train. Responsibility for the shortage of consultants in this field clearly cannot be laid at the door of the current Government, because of the length of time it takes to train consultants. I have always made it clear that there was a failure many years before the 1997 general election to put in the pipeline the number of home-grown staff who would be needed. None the less, career decisions are still being made based on that pipeline, and unless consultant expansion in certain fields continues apace, people will not choose to train in those fields.

People following medical careers are not concerned only with where the glory is. The Government must consider forming a policy on consultant expansion, and not merely leave it be. There are targets, thresholds and limits at every stage of a medical career, from students and house officers to senior house officers and specialist registrars. Only at the end stage do the Government say that that is not their business but a matter for local providers. Without planning, we get inadequate consultant expansion. That can cause oversupply, so that people have nowhere to go at the end of their training, or undersupply.

My hon. Friend the Member for Sutton and Cheam and the hon. Member for South Derbyshire referred to the problems of physiotherapy. The hon. Gentleman made various points that are worth stressing, including the importance of early diagnosis. As many long-term conditions are often, although not invariably, insidious, there can be a period of morbidity before presentation, let alone before diagnosis. It is therefore very important that a swift diagnosis is made.

The hon. Member for Corby gave the excellent example of headaches. People think that they just have a headache, without realising that something more serious might be going on. Neurology is considered by the medical profession to be a hard subject—take it from me that it is. General practitioners are less likely to have a specialist interest in neurology than in other fields, and GP specialist clinics are an excellent idea. That is a major problem.

The same applies to acute medicine in hospital. The neurological side is not the highest priority for the on-take medical team. That works both ways. Someone very close to me had headaches and failed to be diagnosed with a tumour. That person was over-diagnosed with migraine in primary care, and the tumour was not even picked up in hospital. There is a real gap in knowledge, and I plead guilty to such gaps in my own medical career. The hon. Member for South Derbyshire mentioned the importance of the voluntary sector. That is not unique to this clinical field, but it is significant, and ensuring that we preserve the value of the voluntary sector is important.

We have had a useful debate, and valuable contributions have been made. I hope that the Minister, in praising the Government's NSF programme and their investments, will recognise that there is still a long way to go.

3.9 pm

Mr. John Baron (Billericay)

I, too, congratulate the hon. Member for South Derbyshire (Mr. Todd) on securing this important debate and on his thoughtful speech. Contributions to the debate generally have been of very high quality. As chairman of the all-party group on motor neurone disease, the hon. Gentleman has a substantial interest in such illnesses, and during his opening speech, he showed a substantial knowledge of motor neurone disease, which is one of the many illnesses that are collectively termed long-term medical conditions. As we know, that term covers a vast array of illnesses that can be defined as: a condition of prolonged duration that may affect any aspect of the person's life". Symptoms may come and go, and usually there is no cure for the condition, although things can be done to maintain and improve quality of life.

It is estimated that one in three people generally and two in three people aged 75 or over are currently living with a long-term medical condition, so I welcome the Government's February 2001 announcement about establishing a national service framework for such conditions. Few would disagree with the aspirations cited by the Secretary of Sate, who said that the framework should overcome the lottery in care and ensure that health and social services work together in all parts of the country. The Government now have a duty to ensure that those aspirations are delivered. The debate is an opportunity for the Minister to provide us with more details of how that will happen.

I am concerned about the adverse impact that Government targets can have, particularly on illnesses such as long-term medical conditions, which are not targeted. I suggest that the Government are so fixated by the 300 or so NHS plan targets that services that are not on their hit list are suffering. Recent figures for neurology, pain management and ophthalmology, for example, all show that an increasing proportion of patients are forced to wait longer for out-patient appointments following a GP referral. The worry is that long-term medical conditions are not headline-grabbing conditions. As one doctor from John Radcliffe hospital recently put it: if you don't have a vote winning illness, then sod you. Medical professionals must determine clinical priorities and politicians must stop interfering. Recent figures show that although spending on the NHS has risen by more than 21 per cent. during the past two years, hospital treatments have increased by only 1.6 per cent., hospital admissions have fallen by 0.5 per cent. and the number of bureaucrats and administrators has increased by 13 per cent. That is partly due to the meddling of politicians.

Too often the needs of those with long-term medical conditions have been overlooked in favour of more headline-grabbing conditions, such as coronary heart disease and cancer. The Long-Term Medical Conditions Alliance has pointed out that the NHS focuses on acute and emergency care, rather than on the needs of those living with long-term health conditions. We fail as a nation if we provide for one and not the other. I therefore ask the Minister to assure us that that will not be the case.

As for the timetable and content of the framework, we know that it will be published in 2004 for implementation in 2005, with a timetable of something like 10 years. Certain bodies, including the Neurological Alliance, believe that to be a very challenging timetable, as other hon. Members have mentioned. Bearing in mind the fact that the external reference group did not hold its introductory meeting until the end of last year and has not met again since, the timetable does indeed appear to be very tight. That is particularly true given that many experts in the field who need to be consulted work within the charity and voluntary sector and will need more time.

Can the Minister assure us that when the framework is published, it will be published in full? That is preferable to publishing only the principles, with the implementation plan following up to a year later, as was the case with the framework on diabetes. Can the Minister confirm that it is the Government's intention to ensure that the national service framework will be as inclusive as possible and will cover the full range of medical conditions?

A press release issued on 12 June last year explained that the framework will focus in particular on services and support for people of working age. Several hon. Members have picked up that point. That focus would exclude so many in our society, yet surely the mark of a civilised society is the extent to which it cares for the vulnerable and less able. Can the Minister explain why the framework discriminates as it appears to? Certainly the Neurological Alliance questions the focus on work and how that sits with previous statements from the Minister that the framework should be about the needs of users.

The Department of Health has confirmed the need for the national service framework to have a joined-up approach to people's social, educational and employment needs. Can the Minister confirm what role the Department for Transport, the Department for Education and Skills and the Department for Work and Pensions have had in helping to formulate the framework?

Looking forward, a precondition for any national service framework to work is that a sufficient number of medical professionals are in place, but we are all aware of the problems of staff shortages in general practice. The British Medical Association recently highlighted that GP vacancy rates have increased dramatically, and an article in The Independent last year stated: the shortage of consultant Neurologists is so acute that most patients admitted to hospital with brain disorders including stroke, epilepsy and meningitis, never see one—they have to be treated by specialists in other disciplines". That point was made by the hon. Member for South Derbyshire. The Neurological Alliance believes that because of a problem with recruitment and retention, we will still be 400 specialists short by 2010. It should also be noted that there is currently a shortage of specialist nurses. What progress is being made to correct those acute staff shortages, with emphasis on the training programmes required to do so?

I have asked a series of questions because the success of national service frameworks cannot be guaranteed by good intention alone. The Government's track record on national service frameworks has been patchy at best—an example is the national service framework on coronary heart disease. The Minister will know that the target was that by April 2002 three quarters of all suitable patients should have received clot-busting drugs within 30 minutes of arriving at a hospital. However, research by the Royal College of Physicians found that fewer than one in three hospitals met that door-to-needle target, and more than 50 per cent. of hospitals were 25 per cent. outside the target.

Conservative Members will keep a close eye on development of the framework. Stating intentions is a worthy start, but the Government must be judged by the improvements felt by those who use and deliver the services. I pay tribute, as other hon. Members have done, to those who work with people suffering long-term medical conditions, not only the medical professionals but the army of carers who support people who are less able than themselves, and those in the voluntary and charitable sectors who dedicate so much of their time promoting the needs of those with long-term medical conditions. Many are unsung heroes in our communities and I am sure that we all want to congratulate them on their work and ensure that they are properly supported.

Outside this place, many people with long-term medical conditions are anxiously waiting for a real improvement in the way in which they are treated. It has been two years since the Secretary of State's announcement on the framework. I hope that the Minister will now provide us with more details by answering my questions fully.

3.18 pm

The Parliamentary Under-Secretary of State for Health (Mr. David Lammy)

I join other hon. Members in congratulating my hon. Friend the Member for South Derbyshire (Mr. Todd) on securing this debate on the national service framework for long-term conditions and on raising the issue in the measured and assured way that we have come to expect. I am afraid that it is extremely unlikely in the 12 minutes left to me that I shall be able to answer all the questions asked in the debate, but I shall endeavour to write to my hon. Friend if I do not reach some of his points.

This has been an excellent debate with some excellent contributions from my hon. Friend the Member for Aberdeen, South (Miss Begg), the hon. Member for Sutton and Cheam (Mr. Burstow), my hon. Friends the Members for Corby (Phil Hope) and for Tynemouth (Mr. Campbell), and the hon. Members for Oxford, West and Abingdon (Dr. Harris) and for Cheadle (Mrs. Calton).

Many people in the country, from all backgrounds, have a wide range of neurological and long-term conditions. More than 300.000 people have epilepsy, 120,000 have Parkinson's disease, and 100,000 have brain injury. Fewer people have other, rarer, conditions, such as the 4,000 with motor neurone disease. In a primary care trust covering 250,000 people, about 1,500 adults will have a physical disability that affects their quality of life and means that they require help with their daily activities.

Co-ordination between hospital and community services and health and social care services could be better. Professionals are sometimes not aware of the wider impact of long-term conditions on people's lives, and service users could be more involved in the management of their conditions. We want to improve services and the experience of people with long-term conditions by addressing some of the issues, such as ensuring that people receive the right kind of integrated health and social care assessment and support, including access to community commitment, providing good-quality information and support for carers and families when they need it, and developing the concept of the expert patient so that people can take an active role in managing their condition if they want to.

Previous national service frameworks, such as the national cancer care plan and the coronary heart disease framework, have made real improvements in their services, and I am sorry that the hon. Member for Billericay (Mr. Baron) felt that he had to make political points in that respect. There is no doubt that there has been tremendous improvement across the board in those fields, and I am particularly proud to have announced the NSF for diabetes a few weeks ago. The long-term conditions NSF will build on the successes and will be developed and implemented in a world in which there are fewer national targets but more scope for flexibility in local implementation.

Mr. Baron

Will the Minister give way?

Mr. Lammy

No. I want to make progress.

My hon. Friend the Member for South Derbyshire shares the concern felt by some that the NSF will have fewer teeth than its predecessors. However, it is a fine balancing act. We cannot talk about targets in the wider NHS while wanting targets for every condition or NSF that we choose to introduce. As I have seen in examining the NSF for diabetes during the past months, we are working in a context in which primary care trusts have funds over three years to examine closely what is happening locally. We put that in place. Alongside PCTs, there are national bodies such as the Commission for Health Improvement—we will introduce legislation soon to firm up the inspectorate for that—patient advisory and liaison services in hospitals and the Commission for Patient and Public Involvement in Health. All those bodies ensure that NSFs and the standards, rather than the targets, that lie within them are delivered. They report back to both the PCT and the centre, so in the next two years, hon. Members will be able to hear what the inspectorate or patient forums in local communities say about whether the local communities are delivering the standards. That is the context in which we now operate, together with the National Institute for Clinical Excellence.

The NSF for long-term conditions is a good opportunity to put right some of the problems that my hon. Friends have identified. We want a wide range of people to benefit, but we need to be realistic about the service improvements that we can deliver. The long-term conditions NSF will focus on neurological conditions and brain and spinal injuries. It will cover the whole patient pathway, examine the common issues that affect this group of people, and set standards that can be more widely applied. The NSF will acknowledge that people often have neurological conditions that will deteriorate and lead to long-term disabilities. It will focus on working-age adults, but it will also address important transitional issues between children's and older people's services. I want to emphasise that in the light of hon. Members' comments.

My hon. Friend the Member for Corby made an impassioned speech about headaches and migraine. The Minister of State, Department of Health, my hon. Friend the Member for Redditch (Jacqui Smith), who has responsibility in this area, will closely look at Hansard to see what he said, and will consider his invitation to meet her.

Some people will be disappointed that more conditions are not included in the NSF, but we have a wide range of other mechanisms—

Mr. Burstow

Will the Minister give way?

Mr. Lammy

I will not give way because we have had a rich debate and I want to make progress.

Some people will be disappointed that more conditions are not included in the NSF, but we have a range of other mechanisms such as the NICE programme, existing NSFs, Action On programmes and modernisation service-redesign programmes to tackle all of those other areas.

Although people with neurological conditions share many common issues and problems, there are specific issues that are relevant to particular conditions, so, where necessary, the NSF will address those issues that are relevant specifically to people with, for example, epilepsy, motor neurone disease, multiple sclerosis, Parkinson's disease, or brain injury and spinal injury. It will also consider conditions such as headache.

Motor neurone disease is a rapidly progressive condition, and my hon. Friend the Member for South Derbyshire is right to bring to our attention the importance of people getting an early diagnosis. That takes an average of 14 months, as there is no quick and easy way to diagnose the disease—to some degree, it is a process of elimination. Following diagnosis, people immediately need a wide range of support from health and social care professionals to help them to live independently at home for as long as possible. That support includes fast-track access to welfare benefits. That rapid response can be a great challenge for local services, but it can be made to work. In Warrington in April 1998, a motor neurone disease service was set up, funded jointly by health and social services. It aims to co-ordinate care for people with motor neurone disease and to avoid delays and interruption to services for people who cannot wait for boundary disputes or arguments about who pays the bill to be settled.

People with motor neurone disease need access to clinical interventions, such as tubes being fed into the stomach and special equipment to help them breathe through the night. Those services must be available throughout the country, and professionals need to be aware of them. NICE has already issued guidance on the use of relevant drugs to help to control the progression of the disease. The Government support research into motor neurone disease through the Medical Research Council and the Department of Health. In 1999 to 2000, we spent approximately £1.6 million on research.

We are aware of many of the problems that were mentioned and we are addressing them by taking forward the NSF. We have set up the external reference group to advise us on what a modern neurological service should look like and how we can put things into practice: its members are drawn from a wide range of fields. I say to the hon. Member for Billericay that Ministers do not in isolation in Whitehall set the targets that improve the quality of people's lives; we set them in conjunction with the royal colleges, the professionals and others. We work together to improve services across the board.

We plan to publish the NSF in 2004, and to start the 10-year implementation programme in 2005. We know how important it is to listen to representatives from across the board of stakeholders, and we hope to do that in the months, weeks and years ahead.