Motion to Take Note
My Lords, I welcome this opportunity to initiate a debate on neurological conditions. I declare an interest at the outset because a member of my family has had MS for about 10 or 12 years, so I have some fairly close and direct experience of what the condition means.
To start with, I shall say a little about disability in general, although it will be about elements of disability that affect people with neurological conditions, and then I shall talk about neurological conditions themselves. Disability affects many people with neurological conditions. One of the main things that people discover is how costly it is to have a disability. There are all sorts of routines in life that most of us carry out very easily but that simply cost more for a person who is handicapped and cannot get about so easily. I am concerned that the Government’s welfare reform agenda properly supports all people with MS to live a full independent life, particularly with the move from disability living allowance to the personal independence payment, but I am not trying to repeat the substance of legislation that is currently going through.
People with disabilities, particularly those in wheelchairs, will often realise that being disabled is very costly. Aids and adaptations can be expensive, and some of the firms supplying them adopt pretty aggressive selling practices even though some of the people they are dealing with are vulnerable. I shall give your Lordships an example. I was talking to a person with MS who said that she wanted an adaptation for her home—I think it was a hoist of sorts. The company came to her home and wanted £2,000. She said that she could not possibly afford that. They phoned repeatedly, and gradually the price went down to £600. There is something very curious when a person with a disability can be hassled in this way over an essential adaptation, when clearly the mark-up must have been enormous if the firm was willing to sell at the lower price.
We see many areas of life where high technology comes in, yet in the disability world modern technological materials are pretty expensive. A lightweight wheelchair of the sort that one pushes is usually so frail that one cannot push it very far, whereas more robust wheelchairs are heavy and hard for people to lift into a car boot. I wish that the technological world would just get stuck into this area; a lot of people would benefit.
I turn to some specific neurological conditions. Every person is different and there is no set pattern for people with these conditions. The conditions are usually progressive, so the patients’ needs must be met in differing ways. What neurological conditions have in common is that they are—I hate this word; I am looking for a better one—unfashionable. They do not have a high enough profile compared with other conditions like breast cancer or HIV/AIDS. I congratulate the organisations backing those; they have had high-profile success. Because people with MS and other neurological conditions have a low profile, though, public awareness is not really there. That means that the conditions inevitably attract less attention from decision-makers and command fewer resources.
I shall give an example from local government. Many people with neurological conditions, and other disabled people, have difficulty gaining access to public buildings. I know that conversions of old buildings can be costly, but in the mean time this can affect people’s basic rights. I appreciate that this is mostly a local authority matter, but I thought that I would just flag it up in passing.
On a national scale, there is currently no national strategy for neurology. This means that there is no proper leadership from the top. That has resulted in some of the very effective neurological charities struggling to make their voices heard in order to get a good service for people with such conditions, regardless of where they live. We have, or had, a National Service Framework for Long-term Conditions. However, when this was introduced the implementation and monitoring were rather poor, which resulted in a lack of understanding of what its real effect has been. The framework was introduced in 2005 but many concerns remain, such as variation in service provision, poor co-ordination of care, poor-quality care and poor information. The framework identified key areas of concern, including diagnosis, access to treatments, information for patients and quality of care and service, and aimed to improve them by 2015. However, I understand that the framework is now no longer the policy of this Government, who intend to have a general long-term conditions strategy. However, frankly, with no leadership, there is real concern that neurology will once again be an unheard voice. There must also be a concern that this will result in a deterioration of care for people with neurological conditions.
I turn briefly to commissioning. I do not want to repeat arguments and debates in which the Minister has taken part on the Health and Social Care Bill, but I want to address commissioning because it affects neurology in a very important way. Certainly, the Minister will have had representations from the Neurological Alliance, as I have had, which represents 40 brain and spinal charities, representing some 8 million people with neurological conditions. The problem concerns how the commissioning of services for people with MS and other neurological conditions will take place under the new CCGs. There is a sense that there is a strategic gap between CCGs and the national Commissioning Board. CCGs, as at present devised, will cover relatively small populations and it will be difficult for them to be cost-effective in commissioning services for less common conditions. I have mentioned that there is a large number of people with neurological illnesses but for each condition there are often, mercifully, not so many sufferers, so the services will involve specialised support for a relatively small number of patients. The national Commissioning Board, which might have an oversight, will be too far removed from the localities. I hope that something can be done to ensure that the CCGs, perhaps working collaboratively with oversight, can make up for the lack of a strategic health authority, which did the job pretty well. I also think that there should be an advisory group within the NHS Commissioning Board on the subject of neurological conditions.
I understand that the National Audit Office is to report shortly on the provision of services for progressive neurological conditions. I will not speculate about what it may contain but it may be very helpful in the scheme of things. When a person is told that they have MS, it is a very traumatic experience for the individual. Often they are simply told to go home and that little can be done. A person with MS—not someone in my family—said:
“I mentioned the lack of support services when people are first diagnosed with MS. This was based solely on my experience where the neurologist told me there was nothing they could do for me but advise me to avoid hot baths and red meat. I was given no leaflets or other information and no support telephone numbers”.
That is pretty serious. The situation may have improved recently but many GPs are not that aware of this condition and it is hard to get information and advice.
The Minister will be aware that one of the key difficulties is the lack of MS nurses or neurological nurses. I wish to quote patients’ comments in this regard. One says:
“My MS Nurse is amazing!! She is great and helps with anything, if it weren't for her I do not know what would be happening to me”.
Another one states:
“My local MS nurse has been an absolute godsend, I could not imagine coping without her”.
That is fine, but many persons with MS do have to cope without an MS nurse. Frankly, if somebody with MS were to move their home and asked my advice, I would advise them not to move until they had checked the availability of MS nurses in the area to which they are going. In other words, they should not go to an area where there is no MS nursing support; it is just too difficult for these people and their life will be much easier if they move somewhere else. That is a real example of a postcode lottery.
I appreciate that some MS nurses are provided by a local authority but I understand that the majority are employed by acute trusts. What will happen under the new commissioning arrangements—assuming that the Bill goes through in its present form—to ensure that the number of MS nurses does not fall under the new scheme of things? I am not sure whether in present financial circumstances it is better to have neurological nurses or more specific MS nurses, plus specific nurses for other neurological conditions. However, the need for some element of specialism is very clear. MS nurses provide support for the whole range of a person’s needs; in fact, they provide a holistic approach to the condition and, of course, they refer individuals to where they can get appropriate further help. Therefore, it is important that there are enough neurologists for patients to be referred to. Some MS nurses have told me that they provide advice to patients but, if there is no neurologist to whom they can refer the patients, that is pretty difficult. Therefore, there is a real need for MS nurses. They do refer patients for physiotherapy. I am told that of all the things to help people with MS, physiotherapy actually does help. I speak from experience in my family. However, existing resources for physiotherapy are limited and many patients with MS do not have access to physiotherapy at all.
There are quite a lot of disease-modifying drugs that manage the symptoms. There have been many discussions about the cost of these, in which NICE has been engaged. However, the majority of MS patients apparently have very little of this sort of treatment. A well known drug is Tysabri, which has been recommended by NICE. It has a positive NICE appraisal. Some other drugs are made available; I think that beta interferon is one of them. I appreciate that they are costly but there needs to be a more systematic approach to the sort of drugs that should be made available for people with MS, and an assessment of their efficacy for the condition. One neurologist is alleged to have said—I did not hear him say this—that 90 per cent of his patients take cannabis. He feels that he cannot criticise that. It may not be therapeutic but, if it makes the patient feel better, one has to be very careful before one gets too critical of that. I suppose that in the long term the main hope is stem cells. Their use to treat this condition is a long way off but I hope that the Government will put maximum effort into encouraging stem cell research because that represents more hope for patients than anything else.
We have a rather disappointing record as regards comparisons with European countries. In a study conducted in 2009 on access to treatments, Britain was ranked 25th out of 27 countries. Another study in 2010 assessed provision for specific conditions, including MS, and the United Kingdom ranked 13th out of 14. International comparisons matter although it is difficult to establish whether they are evenly based.
I wish to mention a couple of other neurological conditions. One is trigeminal neuralgia—I hope that I have pronounced that correctly—5 per cent of people with MS also have TN. It is frequently misdiagnosed. This is understandable as only about 7,000 people are alleged to have the condition. However, it causes incredible pain and even after surgery the pain may return within a few years.
A couple of days ago I was talking to a specialist in epilepsy. He was very concerned that there should be quick and efficient diagnosis of children. If they can be diagnosed quickly when they are young, their lives can be saved or their quality of life can be improved. At present, 1,000 people a year die of epilepsy—40 per cent of these deaths are avoidable—and 59 per cent of childhood deaths are potentially avoidable. Again, improved access to specialist clinicians, nurses and surgery is the key.
I wish to ask the Minister a few more specific questions in my remaining time. How will he ensure that people with long-term neurological conditions will be supported in order to improve their quality of life, including access to treatment and care? There is an urgent need to have someone accountable for neurology services. Does the Minister agree that appointing a national lead for neurology within his department would help to ensure improvements so that we can catch up with our European counterparts? It has recently been made public that the Government will be developing a long-term conditions strategy. Will the Minister elaborate on that and give us some idea when it might be published? Given the experience of the National Service Framework for Long-term Neurological Conditions and the lack of impact that it ultimately had, what will the Minister do to ensure that neurology is not once again ignored and underrepresented? Finally, does the Minister recognise the need for a neurology strategy as a separate entity from the planned long-term conditions strategy?
If this debate raises awareness of the issue and raises the profile of people suffering from these conditions, it will have achieved something. If the Minister can give me a positive answer to these questions, it will have achieved a great deal more.
My Lords, I should declare my interest because a member of my family has multiple sclerosis.
My speech is to be a bread and butter one. As I am an Australian speaker, your Lordships will appreciate that my comments will be upside down, the butter first and then the bread. The butter is the special part: the noble Lord, Lord Walton of Detchant, who is such an expert on neurological matters, has authorised me to place on record part of the contribution that he would have made, but regrettably he is not able to take part in this debate.
This is what the noble Lord has asked me to say. This Government should be congratulated on their recent Statement on support for translation research—that is, translating results of basic scientific research into practical patient care. For example, discoveries in molecular biology and genomic medicine are beginning to identify treatment for some rare but serious neurological diseases such as muscular dystrophy. Many other inherited diseases are likely to benefit. There is a problem. The drugs discovered in this research will be very expensive and commercial benefits will be limited because the number of patients is not large. The Government will have to take note, as indeed they are doing, of the so-called orphan drugs. It is also important to note there have been massive developments in neuro-rehabilitation in diseases such as multiple sclerosis, Parkinson’s, epilepsy and Alzheimer’s. All can have their effect increasingly modified, to the patient's benefit, by drugs and physical as well as psychological interventions; and in this respect it is crucial that the Government should support the roles of specialised nurses, physiotherapists, occupational therapists and other healthcare professionals.
Now for the basic bread—my remarks. Neurological conditions are common in the UK. The majority of them are long term, which inevitably puts anyone diagnosed with such a condition in regular contact with the National Health Service and social services.
My eldest daughter has had MS for over 30 years and she is supported by a wide range of services available at present. Sarah has attended more than 60 outpatient clinics at the National Hospital for Neurology and Neurosurgery in Queen Square in those 30 years. However, she is conscious that, expert as her consultant is, she sees his team only every six months. It is help with the day-to-day living that people with long-term neurological conditions need. By making telephone contact with her MS nurse, she is able to access help from the allied health professionals within the hospital and within the community.
Sarah receives community neuro-physiotherapy for a short six-week burst every few years. This is to help her to maintain her daily exercise routine and to learn new exercises to tackle new symptoms as they arrive. Occupational therapists help those with disabilities to learn how to adapt to their own specific everyday life. The occupational therapist helps Sarah with gadgets and key life skills to make everyday living easier. The podiatrist has made specially fitting insoles and toe props for her shoes so that she can continue to move around to the best of her ability to some degree. The dietician has tailored her eating patterns to assist with her energy levels. Sarah is always clear about the benefits of the support she receives. She says that their intervention has always made just managing all right into managing better.
The specialist nurse has an essential role to play too. I have always emphasised the value of specialist nurses in any field and never more so than in neurological conditions. Sarah is a patron of the MS Trust. There are real fears that specialist nurse posts are not being filled when they become vacant. The MS Trust, which provides specialist education and training for MS nurses and other professionals working with MS, keeps a log of all MS nurses in post and is extremely concerned that their numbers are reducing. There are not enough MS nurses in post to cover the 100,000 people with this condition. I would speculate that the same could be said for other specialist nurses across the NHS. Just this week, Macmillan and the Skin Association have told me of the loss of specialist nurse posts dealing with those conditions. Specialist nurses may cost more to train but they repay the NHS in huge benefits to patients and save the NHS money in the long term.
It is not just the NHS that helps people with long-term neurological conditions. Social services in local authorities provide adaptations, carers and help around the home so that the individual can continue to live within their community. The present pressures on local authority budgets are causing concern that they may result in cutbacks to services and, if so, this could have a very adverse effect on the lives of those dependent on those services.
The Department for Work and Pensions through Jobcentre Plus has a range of benefits that individuals can apply for. Many of these are under review as part of recent reforms. Disabled people are naturally concerned about the outcome of the Welfare Reform Bill and the detail is still awaited.
My daughter received help with travel costs, via Access to Work, from 1998 to 2007. This paid for a taxi to take her to and from work each day because she was unable to use any form of public transport at that time. Now that buses have been fitted with ramps, she can access these in her wheelchair scooter but she is still unable to sit for hours on buses, and distances travelled are therefore limited. However, she almost personally won that battle last year when London Buses decided that it could not allow buses to take electric buggies any more. She took up the issue with Transport for London and a decision has now been made on the exact weight of buggy that can be allowed on a bus without danger of breaking the ramp. The system seems to be working happily again. It was important to establish that before the Olympics and the Paralympics, when many people will be using that form of transport.
The Access to Work grant allowed her to stay in work, earning a wage and paying the requisite taxes, for a good 10 years longer than she would have been able to work without that support. The grant was a small amount compared to what she paid in tax and national insurance. It makes sense for the Government to ensure that this grant continues to be widely available.
If you are a person with a long-term neurological condition, it is vital that you have every opportunity to remain as well as you can. That will allow you to play your part in society. At the Neurological Alliance’s annual parliamentary reception a few years ago, the main speaker was Tom Isaacs, who has Parkinson’s. He was talking about long-term neurological conditions in general, and said that society and the NHS do not encourage people with long-term neurological conditions to become informed and to learn as much as possible about their condition. There are real worries that the services these people need to maintain their quality of life to the best of their ability may be lost in the changes.
I read that the Russians are developing a way of reproducing the myelin sheath, which is destroyed by multiple sclerosis. All such developments are a long way off, but a lot of research is being done. One thing we must accept is the indomitable spirit of people with these conditions, their unbelievably positive thinking and optimism. That is something we accept.
I also want to pay tribute to the number of voluntary organisations and charities that give their support to people with neurological conditions. There are too many to mention here and I would hate to miss any from the list, but their provision of information leaflets, practical advice, comfort in distress, and concerted efforts to make the conditions more widely known and understood is outstanding. We must also not forget the families and friends who help to care for individuals.
I congratulate the noble Lord, Lord Dubs, on bringing this subject to us, and this debate has been a good opportunity to place all these matters on record. I know that we have a caring Minister in the noble Earl, Lord Howe, and I am glad that he has found the time to be here for this debate, in spite of all the pressure he is under with his responsibility for the new health legislation.
My Lords, as I follow the noble Baroness, Lady Gardner, perhaps I may say that I have met her daughter, very much admired her indomitable spirit and am not surprised that she won her campaign with the buses. I thank my noble friend Lord Dubs for giving the House the opportunity to debate this important issue. Your Lordships will not be surprised to know that I want to concentrate mostly on the problems raised by families and friends who care for people with neurological conditions, and principally those who are looking after someone with conditions such as dementia and Alzheimer's.
First, let me say a word about the particular problems for carers of those with neurological conditions. Many of them are fluctuating conditions. MS is a case in point, as my noble friend and the noble Baroness have reminded us, so that the need for support is not constant. It is not easy, therefore, to have a once-for-all assessment which provides you with ongoing support. Sometimes, your needs are much greater than at other times, and that is often very difficult to feed into the assessment process. Carers nearly always have a problem identifying themselves as carers anyway—particularly as people with needs for help which are separate from but intricately linked to those of the person suffering from the condition.
People say: “I am not a carer. I am a wife, a husband, a daughter, a son”. Time and again, we come across the fact that once you have identified yourself as a carer, you can access services and people who can help you, but unless you make that connection, you cannot get yourself into the system. I will never forget a carer who some years ago gave me a wonderful analogy of that. She said, “I feel as though somewhere there is a great mushroom of information and help. If I could find my way to the stem, I would find my way up and into the mushroom, but I do not even know where the stem begins”. That is an interesting picture that we might keep in our minds. Those problems are especially acute for people with fluctuating neurological conditions.
I turn to a condition which, sadly, rarely fluctuates but is progressive and terminal and is the cause of huge stress for carers—perhaps, because of the very nature of the condition, it is sometimes more distressing for the carer than for the sufferer. I refer of course to dementia. Currently, 600,000 carers are looking after somebody with dementia and the number of sufferers, as your Lordships will know, is estimated to rise to at least 1 million by 2025. One in three people over 65 has some form of dementia, and a quarter of hospital beds are occupied by sufferers, so it is a huge problem of our time. It is associated with increased longevity—a cause for celebration, as we often say—but undoubtedly also a cause of stress for caring families.
The stress manifests itself in three different areas, all of which need support. First, there is the financial situation. Although many carers for people with dementia are themselves elderly spouses, there are still many who have given up paid work to undertake the task, resulting in substantial loss not only to their current but their future potential income in the form of much reduced pensions. The costs associated with caring, such as the need for increased heating—a particular problem at present with the rising cost of fuel—special foods, special transport, and so on are all a cause for concern. I make special mention of an often ignored problem: that of dealing with incontinence. Not only is it incredibly distressing to deal with, it also costs more. We are constantly hearing reports of how the rise in VAT has hit families who care, because they are having to spend more on a range of VAT-rated products such as cleaning materials, detergents, bandages and, in particular, continence pads and bedclothes. Families frequently raise the magnified impact of high energy costs, as they have to have the washing machine on every day to wash bedsheets and clothes as a result of incontinence.
The income of those families—those carers and sufferers—must be protected. I know that noble Lords who have been speaking on the Welfare Reform Bill—I am glad to say that some of them are speaking here today—have been really banging that drum. The House owes them a great debt of gratitude for all the work they have done thus far on the Welfare Reform Bill, which comes to us on Report next week. I know that the disability population owes them a great debt of gratitude.
Carers’ physical health is often also affected by caring. Sixty per cent of carers report a back injury of some kind. Although the noble Lord talked about the technology—hoists, and so on—time and again you hear families say, “They did not supply the hoist”; “It was the wrong kind when it came”; “I could not work it because they had not taken notice of the fact that my wrists are weak”; and so on. They are often affected by lack of sleep, as dementia sufferers often turn night into day and have to be watched constantly. Respite provision is increasingly hard to come by, carers report, as local authorities cut their budgets and as the voluntary sector, which often provides the best form of respite, is struggling to maintain services. Commissioners, who are always frightened about what carers will ask for if they ask them what are their respite care needs, should be reassured, because every piece of research shows that carers habitually ask for less than anyone thinks that they will want. You offer them a fortnight off and they say, “No, I do not want a fortnight off. What I want is one night's sleep once a fortnight or once a month”. That is not too much to ask considering that that is how we will keep the carers going for, often, many years.
Perhaps the most difficult problem that carers in this situation face is the emotional consequences of dealing with a loved one whose personality has changed, who may no longer recognise them and who may be aggressive—even violent—where once they were placid. Often, the potential providers of support focus entirely on the patient; they do not even notice the stress on the carer. Many a time, you will meet a carer who says, “The time the GP turned to me and said ‘How are you?’ was the most amazing moment, because I realised that someone else had noticed”. That is where carers’ support groups can be of tremendous help. They can meet other people in a similar situation and admit feelings that are hard to admit, such as the fact that you are violently angry with the person you are caring for.
I reiterate what has been the theme of your Lordships’ scrutiny of the Health and Social Care Bill. It is no use simply making changes to the NHS unless you include social care provision. It is not enough to increase inspection regimes or to talk endlessly about extra regulation. We have to change the culture surrounding the provision of social care. We had to change it at the Department of Health. I commend the work of David Behan, Paul Burstow and the Minister here on that. It is to be hoped that the forthcoming White Paper on social care emphasises that it is as important as healthcare. We have to change the culture in service provision, so that we regard services for people with dementia as ranking in importance with what we give to lifesaving surgery and medicine. It is not as glamorous, heaven knows, but those in the situation I have outlined regard it as of just as great importance.
We also have to change the culture of those who work in the service. I acknowledge the skills and dedication of many employees in this most difficult of areas, but too many employees’ values are not what we could wish. I was talking to a care provider recently who told me that they were turning the interview procedures for those who wanted to become care assistants on their head, so that they start by testing their values, not their skills and experience. We could do more to ensure that others do the same and reject those who do not meet the values test. Of course, as long as care workers are so poorly paid, it is difficult to increase the status of this work, but it should surely not be beyond the wit of those who work in the field to promote the fact that caring for those most vulnerable people carries with it more satisfaction than stacking shelves in the supermarket.
Caring for those with dementia is not a problem which will easily be solved, but as it is not going to go away, we must all take more responsibility for ensuring that we do it as well as possible. With one in three of the older population having some form of it, it will happen to every one of us or to someone we love in the foreseeable future.
Finally, without reiterating the long debate we had yesterday about the future of social care, and with apologies to the Minister for banging on endlessly about this subject, I feel that the long-term solution to the problems that we are looking at today is a partnership approach to the funding provision of care as set out in the Dilnot report. It seems to me that we owe that to the families who continue to care, who do it willingly and with love but rarely with enough support.
My Lords, I, too, am extremely grateful to the noble Lord, Lord Dubs, for introducing the debate and for allowing us to widen it a bit into, for example, the costs of being disabled.
The term “neurological conditions” covers a huge number of conditions, as has already been said. From motor neurone disease to autism, there are hundreds and hundreds. In the family of neuromuscular disorders, of which I know a little, there are also a huge number of conditions, even though they are considered rare or very rare diseases, with a cohort of only about 70,000 people altogether. I shall return to these particular conditions in a moment.
The noble Lord, Lord Dubs, resisted the temptation to rerun some of the debates in Committee on the Welfare Reform Bill about the personal independence payment, which is the replacement for disability living allowance from 2013. However, I shall give into temptation just a little bit, which I hope will be acceptable. Having to save 20 per cent of current expenditure could mean that some people with quite serious, but, say, fluctuating neurological conditions such as MS, which we have heard quite a bit about this afternoon, might not qualify for the award of PIP in the future—I declare an interest in that I receive DLA. This is why it is so important to get the PIP assessment criteria right before it is rolled out.
I am particularly tempted to say something about the Government's intention to take the aids, adaptations and appliances that disabled people use into account when assessing someone's eligibility for PIP, which could mean that the more determined a disabled person is to get out and about, the more they are penalised. We do not want a situation to develop whereby those who use, say, manual wheelchairs will not qualify because they do not get enough points on assessment, but those who use electric wheelchairs do. They may both need as much extra heating in their homes, or help with accessible transport such as taxis. Many of these people will have neurological conditions such as MS or Parkinson's disease. We need real clarification about how the use of aids, adaptations and appliances will be used to assess people who apply for PIP.
I will not say any more about the ramifications of the Welfare Reform Bill at this point, and will instead concentrate on the report just out, put together by my own consultant, Professor Michael Hanna of University College London Hospital’s NHS trust. His report analysed 266 unplanned hospital admissions for 200 patients with a neuromuscular disease across eight NHS trusts. The key finding of the data analysed was that 37 to 41 per cent of all emergency admissions could have been avoided, thus saving the NHS up to £31 million a year.
Neuromuscular conditions are progressive, so it is essential for patients to receive ongoing input from a co-ordinated multidisciplinary team of specialist health professionals to manage changing symptoms, to reduce complications and to provide expert advice on equipment and treatments. Many patients are still unable to access the right medical equipment and specialist physiotherapy, which can keep muscles supple and reduce the risk of falls.
At present, there are just 31 expert care advisers to support the 70,000 people with neuromuscular disease. This is half the number recommended by the Walton report in 2009, which criticised the NHS care of people with the various forms of muscular dystrophy as inadequate. However, the number of expert care advisers has more than doubled since 2008, following campaigning for these key roles by the Muscular Dystrophy Campaign. Having a neuromuscular care adviser in post can actually save the NHS money by, for example, allowing them to take on administrative tasks otherwise done by a consultant or GP, signposting patients to local services and liaising with other service providers. Dr Majumdar, paediatric neuromuscular consultant at Frenchay Hospital in Bristol, estimated that the neuromuscular care adviser there saved over 80 hours of consultant time per Duchenne muscular dystrophy patient over the lifetime of the condition.
The experience of the MDC with neuromuscular care advisers is mirrored by the experience of other groups. We have already heard how important the MS nurses are. The MS Society says that such nurses are a vital source of support, from managing relapses to giving advice on drug treatments, and, as with neuromuscular care advisers, acting as a gateway to other specialist services. As the noble Baroness, Lady Gardner of Parkes, said, 40 MS nurse posts are currently under threat in England, but the MS Society points to the savings that the NHS will make if there are enough such specialist nurses. Specifically, these nurses promote self-management and often prevent long hospital stays.
The same is true about Parkinson's disease nurses. They are an invaluable local source of expert knowledge and can help those who are newly diagnosed come to terms with the diagnosis. They can offer guidance on managing medication and make appropriate referrals on to other professionals, such as speech and language therapists and physiotherapists. Similarly, epilepsy nurses have the same sort of role and provide a source of expert knowledge and guidance. These specialist nurses and care advisers, as we have already heard, are the great unsung heroes of the National Health Service and their roles must be recognised for the tremendous support that they provide.
Turning back to Professor Hanna's report, I should say that, obviously, not all emergency admissions can be prevented. For example, although my condition is a muscular rather than a neurological condition, I myself had an emergency admission to St. Thomas's Hospital when I fell while trying to get into a taxi outside the Peers' Entrance four years ago. I am not sure that anything would have prevented my fall except for me to have been thinking more about what I was doing. However, the report's findings were broader, and showed that many emergency admissions could have been prevented with better planning. The four main factors that Professor Hanna identified in preventing emergency hospital admissions for those with a neuromuscular disease were: a delay in access to neuromuscular services; a lack of ongoing surveillance of the condition; the lack of an emergency plan; and the provision of appropriate equipment.
These findings backed up a report produced by the Muscular Dystrophy Campaign earlier this year, Invest to Save: Improving services and reducing costs. Tracey’s case is cited as a good example of a lack of planning. Her son has Duchenne, one of the most severe neuromuscular conditions. Despite being admitted to hospital with pneumonia, he was not assessed to be able to start treatment at home. With such treatment, his hospital admission could have been prevented. She said:
“My son’s first chest infection was pneumonia; in hindsight other professionals should have known he needed to start night time ventilation. Even after antibiotics and a 10-day stay in hospital, my son did not have assessments to determine his home ventilation needs. We should have been given instructions on chest physiotherapy and we should have had antibiotics at home to start treatment early. The hospital took several days to diagnose his chest infection believing it was a heart condition”.
Another shocking story about the same condition, but making a different point, illustrates why health professionals must find out about any emergency plan a patient has. Phillippa Farrant is from Eastbourne and has a 20 year-old son, Daniel, with Duchenne muscular dystrophy. He is seen at the Lane Fox unit at Guy’s and St Thomas’s Hospital in London. Speaking about Dan’s experience at the local hospital, Phillippa said:
“Dan goes in and out of hospital quite often and has received some good care but other times it has been horrifying. Boys with Duchenne … are prone to chest infections, partly because they become unable to cough and clear their lungs. This August, when I took Dan into the hospital with a chest infection they said it was just pain caused by him coughing a lot—a ridiculous idea as he has been physically unable to cough for years. I told them they were wrong and asked them to call the specialist but they refused. Delays in treatment like this are really dangerous for boys like my son. I am furious they played with his life in this way”.
I fear that the refusal or reluctance of healthcare professionals to co-operate in this way across different hospital trusts is all too common, and must change if patients’ lives are not to be put at risk.
I shall end with some positive news. Thanks to the MDC, a national neuromuscular work plan has been undertaken by the specialised commissioning groups across England since April of this year. They presented the results of the work they have done so far towards the national plan at a workshop in Cambridge this week. So we move slowly forward, but there are many challenges ahead in the complex and varied field of neurological conditions. It is vital that, in the new NHS landscape being created, no one is left behind.
My Lords, I am grateful for briefings from the Spinal Injuries Association, and from my daughter, who has tetraplegia, and to the Motor Neurone Disease Association. I am also glad to participate in this debate, which allows for deeper thought about the needs of people with neurological conditions than is possible in the lengthy debates around the Health and Social Care Bill, and indeed the Welfare Reform Bill.
I have learned, and am still learning, about the disabling barriers that people with different impairments encounter, both as a doctor working with disabled people over the last 30 years, and also as the mother of two adult disabled children. I am convinced that policy will not be effective if the social model is not fully embraced as part of the foundational principles underlying legislation. But some needs are medical, and require highly specialist expertise. I would like to draw attention to the fact that medical research into neurological conditions is grossly underfunded.
It would also be remiss of me not to mention the importance of attending to the emotional and mental health needs of patients with neurological conditions. I am thinking here particularly of newly spinal cord-injured patients. It is not just the obvious psychological adjustment to a new impairment, and all the learning required to keep well and to reintegrate into society. We should remember that many people acquire spinal cord injuries during a failed suicide attempt and there may be an underlying mental illness which also requires active treatment. It is the partnership between medical and social agencies working with the disabled person that will best meet that person’s needs, and the needs of their family, while recognising each person’s right to respect for their private and family life, as provided by Article 8 of the European Convention on Human Rights.
In 2009, the NHS published an updated National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, for use in England with revised eligibility criteria. In paragraph 79 of the framework, explicit mention is made of the Coughlan ruling under which a person with a high-level spinal cord injury or similar health need is entitled to continuing healthcare funded by the NHS. The purpose of the continuing healthcare assessment is to establish whether an individual’s care needs are primarily health related or social in nature. This is done by measuring the totality of their care needs according to their nature, intensity, complexity and/or unpredictability, and gives rise to the concept of a primary health need. These assessments are done at the time of initial diagnosis, they are reviewed regularly and there may be a reassessment when a person’s needs have changed.
For many people, securing continuing healthcare funding is fundamental to enhancing their prospects in rehabilitation and their prompt discharge, and thereafter in the community in reducing the likelihood of complications requiring hospital readmission. However, outcomes for individuals seeking continuing healthcare are very uneven and unpredictable across the country—a classic postcode lottery.
A primary cause for concern is the lack of quality clinical input into these assessments from professional practitioners with experience of spinal cord injury and of the patient in question. Often, no opinion is even sought when assessing patients in the community. A detailed and insightful clinical assessment from a spinal cord injuries centre consultant carries significant weight, but is all too often a key missing component. In the community, in particular, the patient is frequently left to persuade sceptical assessors, and when declared ineligible, to battle the bureaucracy of the primary care trust alone.
Unfortunately, there are an increasing number of appeals by people with tetraplegia who are being found ineligible for continuing healthcare funding, although those who appeal are often later found eligible. For people with some neurological conditions the award of continuing healthcare funding will be welcomed, but for others it will not. Consider someone with spinal muscular atrophy, which is a degenerative condition. For much of that person’s life, any support needs will be considered primarily social in nature and, appropriately, funded by the local authority. Increasingly, people are receiving direct payments to employ their own personal assistants. However. when a person’s condition leads to them needing more intensive support, such as being on a ventilator or needing a personal assistant 24 hours a day, some social services departments are asking the local PCT to pick up the funding under CHC rules.
Some people, including some with spinal cord injury, do not want to move on to continuing healthcare funding when their condition deteriorates because they will no longer be allowed to employ their own staff—personal health budgets allowing this are not yet available. The Secretary of State has announced that personal health budgets will be rolled out in 2014 subject to the evaluation of the pilots, and I think that will be welcomed.
There has been quite a lot of talk also about the need for a change in the law to allow people to take their support package with them if they move area, and indeed my noble friend Lady Campbell, who sadly cannot be here for the debate today, has had the first reading of a Private Member’s Bill to introduce a right to portability of support. However, I suggest that portability is not just a matter of geographic portability but should also apply to a change in the funder from social services to health, and vice versa.
Case law—and here I mean the Coughlan criteria—clearly indicates that if you have tetraplegia, you should be eligible for continuing healthcare funding. But many PCTs have been resisting their responsibilities and refusing to honour the Coughlan criteria. Some PCTs, such as Norfolk, have apparently sought to introduce a blanket requirement that anybody receiving complex medical care and considered to be at high risk will no longer receive continuing healthcare in their own home and will have to move into nursing home care, because it is thought to be cheaper.
Rehabilitating people with spinal cord injury in the community requires a positive and active engagement with friends, family and the wider community. It requires an integrated, collaborative, and joined-up approach by the NHS and the local authority, in which recovery is understood as being as much about removing social barriers as about medical treatments. It may require, for example, disabled facilities grants to adapt living accommodation, and the installation of environmental controls. It requires financial support to pay for the extra costs of living as a disabled person.
One of the biggest worries for someone with a spinal cord injury is the risk of pressure ulcers, and the absence of ulcers is usually down to good care. It does not require health professionals to deliver this care, but it does require specially trained personal assistants working under the direction of the spinal cord-injured person. The cost of treating pressure ulcers to the NHS and to the individual is very high.
Prevention must be the priority, but that requires that people with spinal cord injury are well trained and can train specialist PAs to support them. If they go into hospital for medical treatment, it is critically important that their personal assistants continue to support them in hospital, working alongside the clinical team whose job is to attend to the reason for the clinical admission. However, some people with spinal cord injury find that their personal assistants are not allowed to accompany them to hospital and so leave hospital in a worse condition. I would like an assurance from the Minister that the Government support the continuing involvement of personal assistants in the personal care of someone with a spinal cord injury who is in an NHS hospital.
The most obvious addition to a person's daily life is a wheelchair. We have already heard something about wheelchairs. An adequate, well fitting wheelchair is of critical importance in enabling somebody with spinal cord injury, motor neurone disease or another neurological condition to participate in their local community. The current wheelchair service is too slow to respond to the needs of someone with, for example, motor neurone disease. Some people wait as long as two years after the need for a chair has been agreed. Half of those with motor neurone disease die within 14 months of diagnosis. I have heard that some people do not receive a wheelchair in their lifetime because of the unresponsive nature of the wheelchair service. I know that the Motor Neurone Disease Association would like to become a provider of wheelchair services to get round this problem. I hope that the Minister will endorse that aspiration and that it will not be disadvantaged in competition with larger commercial providers.
Another issue of real concern is the lack of palliative care provision for people with motor neurone disease. This is entirely unacceptable. If there is any condition for which excellent palliative care is required, it is motor neurone disease. In Southampton, for example, there is no palliative care provision for people with motor neurone disease. The association is calling for widespread availability. Can the Minister confirm that palliative care services for people with motor neurone disease will be included in the pilot work associated with the current review of palliative care?
For all these conditions there are concerns about how services will be commissioned in future. Will the Government issue guidance on when services should be commissioned jointly for these complex but relatively rare conditions? I am talking about commissioning both at the acute stage and in the longer term for people with complex neurological conditions. The NHS Commissioning Board and clinical commissioning groups will of course need to recognise the difference in commissioning for people with spinal cord injury—normally a fairly static long-term condition, with the prospect of somebody in their 20s living to 70—and for people with a deteriorating condition such as spinal muscular atrophy. What is not clear in discussions on the Health and Social Care Bill is where responsibility for commissioning continuing healthcare will lie in the future. The Minister's response to this question would also be welcome. Certainly, risk sharing between several clinical commissioning groups will be needed to make locally funded continuing healthcare a viable prospect.
With respect to spinal cord injury, does the Minister agree that specialist treatment in spinal injury centres leads to the best chance of recovery and rehabilitation in both the medical and social meanings of the words; that the decline in the number of people with spinal cord injury being admitted to spinal injury centres is to be deplored; that people with spinal cord injury should be treated in such centres both acutely and over their lives, as they need to be readmitted for complications from their spinal cord injury to be managed and treated; and that the National Spinal Cord Injury Strategy Board, which is to be nationally commissioned in future, should also be involved in ensuring that continuing healthcare is appropriately commissioned?
My Lords, I congratulate my noble friend Lord Dubs on securing this really important debate today. Many noble Lords will be familiar with the condition of Parkinson's disease, for which there is no known cure. When one is diagnosed with Parkinson's, one has it for the rest of one's life and has to adjust to one's new life. That is why research needs to continue and must not be the victim of cuts. It was reported in the national press at the weekend that academics claimed in a study that they feared that the cuts would prevent or cut back on research into Parkinson's and other diseases. I hope that that will not happen, otherwise further delays will be inevitable in finding a cure for Parkinson's and other neurological conditions.
People with Parkinson's need a range of health and social care support, which will change as the condition progresses. I will highlight a few of these areas today. The APPG on Parkinson's, which I chair, carried out an inquiry in 2009 and later published its findings in a document entitled Please Mind the Gap: Parkinson's Disease Services Today. The report highlighted disparities across the UK in access to support by people with Parkinson's. Two years on, gaps still exist and I am concerned that the current upheaval in the NHS in England, combined with the financial pressures, could exacerbate the situation.
The charity Parkinson's UK runs an audit each year in collaboration with the Healthcare Quality Improvement Partnership to see whether NICE guidelines for Parkinson's disease are being adhered to. The results are reported in the quality account of each trust and are an excellent way to see if evidence-based standards of quality care are met across the country. The audit has revealed gaps, but the tool provides a way for primary care trusts to measure the areas for improvement. Currently the HQIP is conducting a consultation on which audits will be incorporated into the quality accounts for 2012. If audits such as that for Parkinson's are not included, it will be a backwards step in promoting quality. Clinical audit is one of the most effective ways to measure where standards are being met and to look for service improvements. There is a risk that trusts will only prioritise those they are required to complete and that others will not take place. The National Audit Office has recently conducted an audit to see if services for progressive neurological conditions represent good value for money. The findings are expected to be released soon and will provide an assessment of the support for people with neurological conditions.
Several noble Lords mentioned the value of specialist nurses. I will mention Parkinson’s nurses. Parkinson's UK has invested more than £12 million to pump-prime specialist Parkinson's nursing posts across the UK, demonstrating its commitment to improving standards of care within the NHS. However, 20 per cent of PCTs still have limited or no coverage. Losing community-based Parkinson's nurses could cost the NHS up to £19.5 million in increased admissions and demands on consultant time. Losing hospital-based Parkinson's nurses could cost the NHS up to £15.6 million in longer times spent in hospital. Employing an extra 60 Parkinson’s nurses would provide adequate access across the UK and could save £7.1 million.
Clinical commissioning groups need support and guidance to commission good-quality Parkinson's services that are cost-effective. This support needs to come from networks and clinical senates that understand Parkinson's and can advise clinical commissioning groups about what is needed. Will the Minister give a commitment to support clinical commissioning groups by ensuring that there are neurology networks across England and neurology specialists on clinical senates?
Continuing care is a vital package of care that is arranged and funded by the NHS and is free of charge to the person receiving the care. The decision on eligibility rests not on the condition but on whether the need for care is primarily owing to health needs. My concern is that, in these austere times, decisions could be influenced by financial concerns rather than solely by clinical criteria. It seems that there is an increase in cases being assessed as social care needs, rather than as healthcare needs. Of course, one of these is free for the person with Parkinson's and the other can be highly expensive. A national support tool exists to help score someone's health needs, but it is not sophisticated enough for a condition such as Parkinson's or for the side effects of Parkinson's medication. There is also a lack of awareness of Parkinson's among some assessors. People with Parkinson's and their families report inadequate periods of time for the assessment, resulting in a false impression of the person. Judgments can be made on nursing home or hospital notes that do not adequately reflect the person's symptoms and fluctuations. Will the Minister agree to conduct a review of this tool so that it does not disadvantage people with progressive and fluctuating neurological conditions?
Budgetary considerations mean that there is little incentive for the NHS to tell people about their rights to continuing care, nor has the NHS any incentive to make timely decisions once someone has applied for NHS continuing care. If a person's case is rejected, the appeals and tribunal processes can be lengthy at a time when a person may be at their most vulnerable. There are cases that have been in the system for over three years.
Many people with Parkinson's face having their continuing care funding withdrawn in the later stages of their illness. The reason given is often that their decline is now predictable or that they have stabilised despite the severity of their situation. It seems to me that this is a total contradiction to the families involved, who are bearing witness to a distressing and progressive loss of function in their loved ones. Reports suggest that PCTs are instigating reviews not because of a change in health needs but because of budgetary constraints. Funding is then withdrawn following reassessment. The reason given is that presenting health needs are deemed to have stabilised despite the severity of the condition or that their decline has become predictable. This is despite the decision support tool for NHS continuing healthcare noting that well managed needs are still needs. The King's Fund and the Alzheimer's Society have recently reported a similar pattern of decisions in respect of people with dementia. Will the Minister agree to consider this difficult matter of continuing care and to make it clear to all concerned that people with an advanced degenerative health condition should not have their continuing care or nursing care contribution packages withdrawn on the basis that their decline in health is predictable or that the condition has stabilised? At the same time, will he clarify who will undertake eligibility assessments and appeals for continuing care under the new system and consider how it will ensure that decisions are person-centred and made independent of budgetary constraints?
I think a theme has been developing over the course of noble Lords’ contributions today. I know that people are fearful and worried in today’s climate. I hope that the Minister can give some assurances on this. People with progressive neurological diseases have enough worries about their illnesses. They need reassurance that they will be able to get, for example, the support of the specialist nurses they need. This makes good economic sense, and I hope the Minister will consider this and can reassure people with these conditions that we can alleviate at least some of their worries.
My Lords, I am pleased that my noble friend Lord Dubs initiated this debate, and I congratulate him on focusing the attention of the House on this family of illnesses, which too often can be relegated slightly in the list of priorities. Like many other noble Lords, I have a direct connection. My 35 year-old son has MS. I do not have to labour the impact of that unpredictable illness on people in their prime. It damages and can then shut down different parts of the body as it tightens its hold on the vital organs of life.
It is invidious to compare one serious illness with another, but the neurological illnesses mentioned by my noble friend Lord Dubs and other noble Lords in this debate attack dignity and self-confidence and must be among the worst in the list of illnesses. As yet, there are no cures and, in truth, there is not much early prospect of them. There is a most depressing outlook for the 100,000 or so people with MS in the UK and for the many others with other neurological illnesses. Sometimes the only medical advice available is, in effect, “Grin and bear it”.
My concern today is to lend my support to those who seek for greater priority to be given to these diseases. As we know from a short exchange in the House recently on a Question by the noble Lord, Lord Walton of Detchant, the National Institute for Clinical Excellence seems in no particular hurry to revise its list of approved treatments. I understand its problems in matching limited resources to a wide range of demands, but I want the House to send a message that while perhaps these illnesses tend to lack the massive, fashionable and effective supporters that a few other grave illnesses have managed to muster—and good luck to them—there should be no treating MS and other neurological illnesses as lower-priority also-rans when it comes to the allocation of resources. As I understand it, at the moment, NICE is thinking of 2013-14 for its next major review of MS treatments. That feels a long way off for sufferers, and it is frustrating for them to be denied access to drugs which might help improve their condition on grounds of cost. For example, NICE has just issued a second provisional no for a drug, the first pill licensed for relapsing remitting MS. This was done on grounds of cost. I understand that the decision has been taken in the face of strong support for the drug from the MS medical community and from many sufferers and organisations. NICE has recognised that the drug is clinically effective and highly innovative. It is available in some other European countries, including Germany, Italy, Sweden, Switzerland, Norway, Greece and Denmark. The House will know that some of these countries are less well placed economically than we are.
As the noble Lord, Lord Dubs, said, the recent report for the Department of Health by Sir Mike Richards scored the UK 13th out of 14 regarding patient access to existing and new forms of treatment for MS. This is plainly not good enough. I am long enough in the tooth not to believe all the hype and publicity of the pharmaceutical companies for their latest wonder drugs, but 13th out of 14 cannot be good enough for a country with as many MS sufferers as we have. Nor is it good enough, as a recent Work Foundation report showed, that in the UK 44 per cent of people with MS retire early due to their condition; this is higher than the European average of 35 per cent. Of course, in time this increases the costs to the welfare state by the resulting additional demands on the employment and support allowance system.
I ask the Government and NICE to recognise fully the terrible nature of this family of illnesses and—please—to give them the priority that they need and their sufferers deserve.
My Lords, I thank the noble Lord, Lord Dubs, for having secured this very important debate.
In 2007, the Department of Health issued a national framework for NHS continuing healthcare to try to improve the consistency of approach taken by local NHS bodies by providing a common framework for decision-making and the resolution of disputes. The national framework explains that the services provided as part of that package should be tailored to meet the specific health and social care needs of the individual and should be seen in the wider context of best practice and service development for each client group. Eligibility for NHS continuing healthcare is not based on having a specific medical condition and places no limits on the settings in which the package of support can be offered or on the type of service delivery. Why has this not proved to be effective?
I was pleased to read yesterday in the Times about the pledge to enhance quality of life for people with long-term conditions and a drive to ensure that people have a positive experience when using the health service. Has the 60-step plan been put out to allay fears about the Health and Social Care Bill, which is leading to so many changes and insecurities? Some people feel that localism could mean a postcode lottery. Many people with long-term neurological conditions depend on the correct drugs for their needs. There are only a few treatments for people with MS, so they should be sure of having access to them. The correct epilepsy drugs are also vital.
Care for patients with long-term neurological conditions has traditionally been based in district general hospitals or out-patient clinics of regional neuroscience centres. It is generally consultant-delivered, with, more recently, specialist nurse input. Specialist nurses make all the difference. They teach patients and carers and they are the consultant’s right hand. They link primary and secondary care. A shortage of specialists and a lack of multidisciplinary working have resulted in patchy support for these patients; for example, Epilepsy Action reported that in England in 2008, 50 per cent of trusts did not have a consultant with special expertise or interest in epilepsy and 60 per cent of trusts had no epilepsy nurse.
The Sentinel audit of epilepsy deaths noted that a number of those who died had not seen a neurologist in the preceding year despite still having seizures. Parkinson’s UK showed that despite NICE guidance, 15 per cent of patients have never been seen in hospital by a specialist; 30 per cent diagnosed within the last year have never seen a PD nurse; the majority have not received multidisciplinary team assessment or treatment; and a third of patients admitted to hospital did not feel that the staff knew anything about Parkinson’s disease. Patients with neurological conditions need the correct medication, which needs monitoring. They need to be under a specialist for changes in their condition and to be kept as well as possible. The effectiveness of their drugs needs to be recorded.
Most patients with straightforward stable neurological disorders do not need continuing care at a hospital. However, they need the reassurance that they are being cared for within a network of care that encourages shared best practice, good communication and easy access to the service when and where necessary. With so much change, now is the time for patient involvement and a strong patient voice. If conditions such as strokes can be prevented, so much the better. It would be interesting to hear from the Minister how much better the outcomes have been since the introduction of statins.
I have a few personal experiences in the neurological field. I have a niece who has epilepsy. When she lived in London and was looked after by one of the London hospitals, she had numerous seizures. One day during a seizure when she had collapsed on the pavement, someone picked up her handbag and took it to a police station, leaving her to find that the bag had gone when she came to. After that, we gave her an identification bracelet. Whenever she had a check-up, she was seen by a different junior doctor. There was no continuity of care. On one occasion, she had a seizure in my car. But I am pleased to say that she is now happily married with a young boy and is looked after by a specialist unit.
My sister-in-law’s brother-in-law developed motor neurone disease. I agree with the MND Association. Because of the rapid progression and wide range of symptoms, people with MND have complex and demanding care and support requirements. They need what they need straightaway. Currently, there is no national guidance for MND. The MND Association is calling for NICE to produce a clinical guideline and quality standard for MND. David was a strong man who deteriorated very fast and is now dead.
I am someone with a spinal injury. Damage to the spinal cord leaves a person, if the lesion is complete, without feeling or movement from that area down. The treatment can cover neurology with such complications as autonomic dysreflexia, which involves blood pressure; urology, because the bladder and bowels are paralysed; and orthopaedics. So many complications can arise—such as serious pressure sores, mentioned by my noble friend—that treatment in a spinal unit with staff specially trained in spinal injury is essential.
When I left hospital and lived in Yorkshire, I found that without a voluntary association to support people with spinal injuries and to educate the public, there was a big gap. With some others, we founded the Spinal Injuries Association. We support members with information and advice. We have purpose-built headquarters and, now, a library and a helpline. We have peer support for newly paralysed people. We are involved in a training scheme for helpers with Stoke Mandeville spinal unit and Buckingham University. We could not do this without our valuable fundraisers.
Many neurological conditions need voluntary organisations to help members and to speak out on their behalf. That is essential. There is ongoing need for research into these varied and complicated conditions. There is also a need for new and effective medication. I should like to add my plea to the Minister to look into the wheelchair service for all who need it, including disabled children. This needs urgent rehabilitation.
My Lords, I declare an interest as patron of the Dystonia Society. Dystonia is a neurological condition that causes involuntary and sometimes very painful muscle spasms as a result of incorrect signals from the brain. These muscle spasms can force affected parts of the body into abnormal movements or postures. There are thought to be over 70,000 people in the UK who have some form of dystonia, of whom 8,000 are children. It is a cruel condition in that the earlier it starts, the more it spreads. Dystonia that appears in childhood often starts in an arm or a leg. The limb twists and contorts, and the condition then spreads to other areas, perhaps affecting the other arm or leg, the torso, and sometimes the whole body. It can cause severe difficulties with standing, walking and even sitting. Dystonias that appear in adulthood usually affect only one or two parts of the body. The most common types affect the neck or the eye. Neck dystonia usually forces the head and neck to one side, which can be extremely painful, while eye dystonia forces the eyelids shut, sometimes causing functional blindness. Other parts of the body that can be affected include the hands, voice, mouth and tongue. Dystonia can have a devastating impact. The pain and disability caused by muscle spasms and the unpredictability of the symptoms take a heavy toll on an individual’s quality of life.
Dystonia is unusual in that it is not degenerative, but it is also not curable, so people with dystonia often have to live with its disabling symptoms for 40 to 50 years or more. It is therefore essential that they receive treatment that effectively mitigates their symptoms. This can make the difference between a lifetime of disability, relying on others for care and benefits, or a life of economic independence, actively contributing to society. The most common treatment for dystonia is injections of botulinum toxin, which temporarily paralyse the spasming muscle. Where botulinum toxin and other treatments do not work, the treatment of last resort is deep brain stimulation. An electrode is implanted in the brain and connected by an internal cable to a battery implanted in the chest. The electrode sends a pulse that blocks the incorrect signals in the brain, stopping the involuntary spasms.
Support for people with dystonia is provided by the Dystonia Society, a UK charity which aims to ensure that everyone living with dystonia has access to the support and treatment they need in order to enjoy the best possible quality of life. The society also provides information to those who need it, and advocacy where patients are not receiving the treatment they require. It also provides networks and events to enable isolated patients to share experiences and be given encouragement. The Dystonia Society also works with clinicians and commissioners to improve practice in treating dystonia and to raise awareness of this too little known condition. I draw the attention of the Minister to the sad fact that currently there are a number of shortcomings in the provision of treatment for dystonia.
First, because of a worrying lack of awareness among medical professionals, diagnosis takes far too long, at an average of two and a half years for those who do get diagnosed. The Lancet has estimated that at least a third of cases are undiagnosed. Of course, a GP may see only a few cases of dystonia over a career and cannot be expected to recognise every condition; but far too often, symptoms that clearly indicate a likely neurological problem are dismissed as psychological. There is therefore an urgent need to ensure that GPs are given more effective guidance on investigating symptoms where they are not sure of the diagnosis.
Secondly, there are problems with the provision of funding for the treatment of last resort, deep brain stimulation, in some parts of the country. For a small minority of patients in the UK, around 50 a year, other treatments are ineffective, so they require deep brain stimulation as the final option; otherwise they have no alternative to a life of severe disability, which also results in extra costs for the NHS and society in paying for hospital stays, carers and welfare. Some regional specialised commissioning groups have recognised the importance of deep brain stimulation for this small group of patients who are most desperately in need of treatment. In 2010, the East of England and the South West Specialised Commissioning Groups conducted reviews and, on the basis of the evidence, approved funding. Conversely, in the east Midlands, a blanket decision has been taken not to fund deep brain stimulation for dystonia, a dismaying decision which I hope can be reconsidered, since it ignores the overwhelming clinical support for this treatment and fails to recognise its considerable value in reducing costs to the NHS and society. The Dystonia Society is concerned that deep brain stimulation could be under threat as specialised commissioning moves under the auspices of the NHS Commissioning Board. The danger is that access will level down rather than up—for instance, extending the policy of the east Midlands rather than adopting that of the south-west or east of England, where treatment is routinely funded.
There is also a problem with the funding of botulinum toxin in some areas for the rarer types of dystonia such as voice and hand dystonia, despite this treatment being recommended as good practice by the European Federation of Neurological Societies. As these conditions are rare, it is not judged economically viable to obtain Medicines and Health Care products Regulatory Agency licensing despite the treatments being shown to be effective. It seems most unjust that people are being denied treatment simply because their condition is not widespread—the red tape here could surely be cut. In addition, the provision of important additional support, such as pain management and speech therapy, is very variable across the UK.
The main fear is that the number of cases where effective treatment is not provided will rise. As cost pressures increase, hidden cost savings may be made through an extension of the period between botulinum toxin injections. As the benefits of botulinum toxin wear off in around 12 weeks, it is essential that treatment is repeated promptly at clinically appropriate intervals. Dystonia is a lifetime condition, and if those affected are to remain active contributors to society, it is essential that their symptoms are continuously managed. If injections are de1ayed, they may experience a cycle where they have two or three months of being effective and then one or two months of disability as they await the next injection, which is surely an unacceptable compromise. Clearly it would be very difficult for someone to hold down a job or look after children in such a scenario.
I thank my noble friend Lord Dubs for initiating this important debate and for giving me this opportunity to draw to the attention of the Minister and his department the under-recognised needs of the 70,000 people who suffer with the disabling and painful neurological condition of dystonia.
My Lords, I, too, thank my noble friend Lord Dubs for securing this important and timely debate. It is important because there is a need for the difficulties encountered in getting high-quality care and support for persons with neurological conditions to be highlighted as much as possible; it is timely because of the present consideration in this House of the Health and Social Care Bill.
I want, if I may, to concentrate in the time available on motor neurone disease. When I practised as a nurse, I never came across this ghastly, fatal and rapidly progressing illness. Most general practitioners will perhaps see one or two cases in a working lifetime, and that is at least part of the problem when it comes to commissioning services. While there are some 5,000 people living with motor neurone disease in the United Kingdom at any one time, the condition is not common enough to appear on the radar in the face of the much more common conditions which we hear about all the time, such as stroke, cancer and cardiac conditions.
We had 60 new targets and outcomes announced yesterday, designed to assess quality of care. I have not yet had the opportunity to look at these indicators in detail, so I wonder whether there is one for long-term conditions. Will the Minister tell the House whether any of these indicators refer to the quality of care for someone living with motor neurone disease or other long-term conditions, and how such an indicator will assist in holding the NHS Commissioning Board to account? I note that the Secretary of State said that the department and Ministers would not interfere in how these quality outcomes were dealt with locally. Well, I wish that they would. I wish that something could be done more forcefully, better to ensure proper care and outcomes for patients with long-term conditions.
We dealt with this issue at the Committee stage of the Bill. It is the view of Ministers that the proposed framework provides for the potential for a change in the culture of the National Health Service in its approach to commissioning for long-term conditions. However, there is nothing in the Bill to ensure that cultural change. There are many promises and aspirations about the future, but they are peppered with words like “could do”, “may do” and “as they see fit”—not “will do” or “must do”.
The average survival for a person with MND is something like 14 months after diagnosis. As we know, it is rapidly progressing condition and has high need. I am advised by the Motor Neurone Disease Association that there can be as many as 18 different health and social care professionals providing care at any one time. I can provide testament to that. When my friend lived with and later died from this disease, he had very many professionals and carers involved in providing care, which was better in his case than many receive, but they still struggled to cope with the rapid deterioration and progression of the disease.
As well as high need, there is high cost with motor neurone disease. It is estimated that quality care can cost as much as £200,000 per annum. However, poor care can lead to crises and to unplanned hospital admissions, and costs can easily double. There is also some evidence, as I understand it, to the effect that the incidence of admissions to A&E of persons with MND is increasing. That is a worrying trend which should not be happening and is indicative of the patchy nature of care and financial pressures on social services in different parts of the country. The noble Baroness, Lady Finlay of Llandaff, told us last Wednesday about the lack of end-of-life care in Southampton; and the noble Baroness, Lady Hollins, has reiterated that this afternoon. It is not a case of poor care but a case of denial of access to end-of-life care.
I find it difficult to understand how present-day commissioners can sleep at night when few or no steps are taken to enable people with motor neurone disease to have the best quality of life and dignity in death. Dying badly is not something that should happen to anyone. Having seen the pressures on a family where care was reasonably good, I cannot for the life of me imagine how awful it must be where that care is denied. I fear that the funding pressures now facing the health and social services may mean that we see more Southamptons.
We need good practice to be built on. We need that good practice to be embedded in pathways and systems and we need it to be made sustainable rather than to rely on the individual clinical champions. Let us keep the patient out of hospital by avoiding crises and treatment that is not appropriate. Let us provide the support and the necessary adaptations to enable people with motor neurone disease to live at home with their families. That is good for the patient and it is cost effective.
As the noble Baroness, Lady Hollins, reminded us, the Government have recently announced palliative care pilots as part of their work on the palliative care funding review. I agree that it would make much sense for people with motor neurone disease to be included in the pilots, which should enable a tariff to be developed for these complex and demanding needs. Can the Minister say whether palliative care services for people with MND will be included? I hope he will confirm that.
I have mentioned services that can help people with motor neurone disease to live at home. When my friend was living with this disease, and despite the best efforts, none of the adaptations made to his home or equipment provided could keep pace with the disease progression. The noble Baroness, Lady Masham of Ilton, put it very well. These needs have to be met straightaway. In my friend’s case a particular example was wheelchairs. Quite early on, when he still had some mobility, it was decided that an electric wheelchair would be provided, but one did not appear until he had lost the use of his hands and could not use it. Had it been delivered on time he could have had some months of relative freedom. It is a story that I have heard all too often.
The noble Baroness, Lady Hollins, has also reminded us that the Motor Neurone Disease Association—to which I pay the greatest tribute for the work it does in supporting people affected by MND—has told us that many people have difficulty accessing wheelchairs appropriate to their needs and that, shockingly, as many as 500 people at any one time are waiting for wheelchairs, some for two years. That is totally unacceptable in a modern society. How many of us would like a relative or friend confined to their house—or, worse still, to an upstairs bedroom—for months? Yet that is not hyperbole; it is the reality for all too many.
This brings me back to the Health and Social Care Bill. As we know, the Motor Neurone Disease Association has developed a good partnership model with wheelchair services in pilot areas to ensure that people with MND have access to a wheelchair that is appropriate to their needs. The association would obviously like national expansion of this effective model for assessment and provision so that the present inequality of provision can be dealt with.
As the noble Baroness, Lady Hollins, said, the Health and Social Care Bill provides an opportunity, with the concept of “any qualified provider”, for the Motor Neurone Disease Association to expand its excellent work in providing a fast and efficient service. However, as we have heard in past debates, it is concerned that small third-sector organisations might be disadvantaged in the bidding process. Can the Minister confirm that small third-sector organisations, which are extremely important and valued in the provision of care, will not be disadvantaged against the larger organisations, which have all of the firepower when it comes to applying for “any qualified provider” status?
I hope that this debate today will contribute to the growing awareness of the need for joined-up care for people with long-term conditions. The Health and Social Care Bill fails, in my view, to provide for the integration of care between health and social services which, as my noble friend Lady Pitkeathley emphasised so well this afternoon, is really needed.
I fear for the transition stage. I think that I have seen something like 19 reorganisations of the health service, in one form or another, since I commenced nurse training in 1958. They have all caused disruption, and quite a few have caused disarray. I think that the Motor Neurone Disease Association is right when it expresses the view that some people will be diagnosed, experience the entire course of their illness and die before the NHS and social services get anything like back on an even keel. It is essential that high quality services are available throughout this time of transition. I share that hope and I look forward to what the Minister is going to say in response to this debate.
My Lords, it is an honour to be replying from our Front Bench to the debate initiated by my noble and long-standing friend Lord Dubs. As ever, it has been an excellent debate, revealing the depth of knowledge residing in your Lordships’ House.
Neurological disorders are very common. They account for 10 per cent of all GP consultations and around 10 per cent of acute admissions to hospital, excluding stroke, and amount to a disability for about one in 50 people. They range from migraine to motor neurone disease. I was very struck by a fact in the extremely helpful June 2011 report about neurological disorders, compiled and written by the Royal College of Physicians. It said that, unlike stroke, acute neurology services are rarely provided by neurologists in hospitals when people are admitted with acute conditions, which the Royal College of Physicians believes has adverse outcomes for patients. How many neurological consultants are there and how many do the Government estimate are needed? If the noble Earl agrees that there is a gap between those two numbers, what do the Government intend to do about it?
The report makes three proposals, which are worth quoting here. First, it says that local services should be expanded and improved, with a shift in emphasis from scheduled to emergency care. Secondly, it says that there should be better organised care for patients with long-term neurological conditions, managed in part through an enhanced role for specialist nurses and general practitioners with specialist knowledge in neurology. Thirdly, it says that there should be better local planning of services with increased clinical involvement within a commissioner-provider forum, creating a neurological network to improve clinical and financial outcomes. How will those proposals be delivered under the new architecture proposed for the National Health Service in the Health and Social Care Bill, and how will specialist nurses be trained, retained and encouraged under this new architecture? Will it be done through CCGs, the National Health Service Commissioning Board, or where?
I turn to some specific conditions. I am very grateful for the briefings that we have received from a range of organisations, which shows the strength of the Neurological Alliance. I commend it for the work that it has done. On epilepsy, the provision of services is actually rather poor, and I think that other speakers may have suggested that that is the case with other conditions. People seem to agree that provision is rather poor, and yet it seems that action is slow in coming. My noble friend Lord Dubs put his finger on this—it is a bit of a Cinderella area in the National Health Service. There are several things that the Government could do. The priority of the new national framework for the NHS to tackle avoidable mortality is to be welcomed, but how will the Government commit to explicit inclusion of epilepsy mortality in the outcomes framework? I will refer to epilepsy mortality again in a moment. Will the Minister consider providing a specified neurology lead in each commissioning group? Without that, the Epilepsy Society believes that it will remain a Cinderella service.
On avoidable mortality in epilepsy, the figures bear some exposure. In England and Wales about 22,807 years of life are lost each year through epilepsy. That number of years lost is larger than the years lost by people with asthma. The average number of years of life lost per person is over 30 years. In England and Wales, 11 per cent of all epilepsy-related deaths are in children and young people under the age of 25. The Epilepsy Society believes that these deaths are avoidable.
I happen to know that the Minister shares many of the concerns in this area, because immediately before he was elevated to his present position he was the chair of the All-Party Parliamentary Group on Epilepsy. He addressed a conference in January last year before the general election, which was jointly organised by the Department of Health and the Joint Epilepsy Council. My honourable friend Ann Keen, who was then the Minister, was won over by the case made by these charities. The conference was specifically aimed at NHS commissioners of epilepsy services, and at the end it is reported that the noble Earl who is now the Minister told the commissioners to go away and make a difference. I hope the noble Earl will forgive me if I use his words to urge him to do the same.
I turn to muscular dystrophy, and related neuromuscular conditions, which comprises a group of about 60 different conditions affecting children and adults and can be genetic or acquired. The House has discussed those conditions before, partly as a result of the work of the noble Baroness, Lady Thomas. Recent data suggest that many patients with neuromuscular conditions are being admitted to hospital for emergency treatment but that 37 per cent to 42 per cent of these admissions could have been prevented if the patients had access to the right specialist support. I also received briefing by Professor Mike Hanna. I do not intend to report the case histories that the noble Baroness recounted to the House, but I think that they raise some very important issues, as they illustrate the importance, particularly going back to the Royal College of Physicians’ report, of neurological expertise being available in district general hospitals. That has to be a priority.
Turning to multiple sclerosis, which has also featured in this debate, the Multiple Sclerosis Society has produced an excellent brief about neurological conditions in general and, indeed, about people with MS. As the noble Baroness, Lady Gardner, mentioned, those people with MS rely on a multidisciplinary team of MS nurses, physiotherapists, occupational therapists, psychologists and others to maximise their independence and quality of life. The MS Society legitimately raises some very serious questions about what is proposed in the Health and Social Care Bill. What will happen to commissioning at local level by clinical commissioning groups? It is concerned that many of these groups will cover a relatively small population area, which means that it will not be cost effective to commission services for less common conditions such as MS. The society submitted a response to the Future Forum. The Future Forum itself said that the Bill did not satisfactorily address the concerns that are raised by what is called low-volume commissioning.
Motor neurone disease absolutely amplifies the problems that occur with low-volume commissioning. My understanding is that to commission effectively for a condition such as motor neurone disease, you need a population group of between 2 million and 4 million because it is such a rare disease. This is a point that I have put to the Minister before, but I really fail to see how the architecture being proposed in the Health and Social Care Bill and the way that things are being structured will be able to deliver that effectively. Like the noble Baroness, Lady Hollins, and my noble friend Lord MacKenzie, I fear for the transition as much as I am concerned about the outcomes. It is also unclear as yet what impact the National Health Service reforms will have on MS post nurses. One of the themes that the noble Earl needs to address, which has run throughout this debate, is the importance of specialist nurses for those with neurological conditions.
My noble friend Lady Gale is a great champion for Parkinson's disease. As part of the NHS workforce projects briefing that we received from the Library, page 13 was very interesting. That page shows the complex web of care that is necessary for somebody with Parkinson’s disease, or indeed any of the neurological conditions. The diagram shows that there are at least 20 different people with specialities who are involved in the care of somebody with a neurological condition. Those 20 go from ward hospital staff through voluntary groups to respite care staff, dietician, health visitor, school nurse, if the person is young, and physiotherapist. The person who can co-ordinate those 20 people is of course the specialist nurse who can work with that sufferer and their family.
I should like to return to a theme which I picked up particularly from the comments made by the noble Baroness, Lady Gardner, about integration. My noble friend Lord Dubs and other noble Lords also addressed this issue. Regarding integration and support for people with neurological conditions, we will be debating the Welfare Reform Bill next week in this Chamber but it is difficult to escape from the fact that current government proposals will have a serious impact on people suffering from conditions as complex and fluctuating as motor neurone disease or MS. For example, people receiving contributory employment and support allowance in the work-related activity group will have the payment of their benefit limited to 12 months. We know that many of the 40 per cent of people with MS in this category already face significant barriers to work and a large proportion will not qualify for income-related ESA, leaving them with no financial support. Will the new PIP, referred to by the noble Baroness, Lady Gardner, take proper account of fluctuating conditions? The current proposal not to carry over automatic entitlement to PIP will lead to costly and unnecessary reassessments for those with long-term degenerative conditions, and how much worse will that be in a case like that mentioned by my noble friend Lord MacKenzie—motor neurone disease, which can progress very rapidly?
The range and quality of the briefing that we have all received is testament to the seriousness of the challenges facing those with the many different kinds of neurological disorders mentioned today. I am afraid that the progress made, such as it is, may even now be faltering, stalled or in jeopardy, due to a combination of the reorganisation of the NHS; the loss of posts—for example, specialist nurses; the lack of clarity about who will be responsible for what, particularly during the transition; the cuts to local authority funding; the loss of strategic health authorities to commission the training of those specialising in these conditions; and, indeed, the funding problems of the voluntary organisations that provide support for those with neurological conditions.
I am not surprised that my noble friend Lord Dubs wanted to have this debate. It has been illuminating and important and has outlined a huge challenge for the Minister when he responds.
My Lords, I thank the noble Lord, Lord Dubs, for tabling this Motion, which has provided for such a richly informative and valuable debate. I know that this subject is close to his heart, as it clearly is to all those who have spoken today. The noble Lord made the observation that neurological conditions have enjoyed an unfairly low public profile, and he is right.
As we have heard from the noble Baroness, Lady Thornton, neurological conditions affect a significant number of people—an estimated 8 million in England. They account for approximately 20 per cent of acute hospital admissions, and are the third most common reason for seeing a GP. We have also heard that, despite the existence of authoritative guidance in the shape of the NSF for long-term conditions and NICE guidance, services continue to fail many people living with a neurological condition.
Change is needed, and through the health reforms currently progressing through this House we want to ensure that we have health outcomes that are among the very best in the world. Effective commissioning is key to delivering high-quality services. Commissioning in the past has been too remote from the patients that it intends to serve. Commissioning decisions made by clinical commissioning groups will be underpinned by clinical insight and knowledge of local healthcare needs.
Our commissioning reforms also recognise the needs of patients for specialised services, with the NHS Commissioning Board commissioning such services in future. Additionally, with low-volume services that fall outside the scope of specialised services, there will be flexibility for commissioning groups to decide how to commission—for example, through collaboration or thorough a lead-commissioner arrangement. Commissioners will need high-quality commissioning support, much of which will come from the voluntary sector. At this point, I join the noble Baroness, Lady Thornton, in acknowledging the work of Neurological Commissioning Support, which is helping to ensure that the real experts—people living with neurological conditions—are at the heart of local decision-making.
Quality standards, developed by NICE, will also be at the heart of the system, providing authoritative statements of high-quality care. They will have real traction within the system, linking with tariffs that will see providers paid more for quality care. Quality standards covering epilepsy services for children and adults have already been referred to NICE for development, and quality standards covering a number of neurological conditions including MS, motor neurone disease and Parkinson’s disease featured in the recent engagement exercise run by the National Quality Board on the proposed areas that will initially make up the library.
The NHS outcomes framework will ensure that commissioners, providers and others are better able to identify those things that can drive up performance in the NHS by providing a focused set of national outcome goals and supporting indicators that patients, the public and Parliament will be able to use to judge the overall progress of the NHS. It will inform the Secretary of State’s mandate to the NHS Commissioning Board and, in turn, to the NHS commissioning framework.
Let me give a few examples of the relevant indicators. In domain 1—preventing people from dying prematurely—the overarching indicator is about mortality from causes considered amenable to healthcare. Epilepsy is one of the conditions where there is room for significant progress. Domain 2—enhancing quality of life for people with long-term conditions—addresses such issues as the proportion of people feeling supported to manage their condition, which is important for people with conditions such as CFS/ME, acquired brain injury, MS and motor neurone disease.
The aim of domain 3—helping people to recover from episodes of ill health or following injury—is to capture information on patients’ journeys through the system. Domain 4—positive experiences of healthcare—will look at such things as patients’ experiences of primary care. Domain 5—treating and caring for people in a safe environment and protecting them from avoidable harm—can, for instance, support better medicines management, which is crucial for people with Parkinson’s disease.
We must also have a much clearer split of responsibility—a sense of joined-up access across the care pathways to deliver a less fragmented and more person-centred approach to planning. Integrated service provision is central to our reform agenda to ensure more joined-up thinking and commissioning on these issues, and one might say that there was never a more relevant area for that than neurological conditions. This is being demonstrated very ably in Nottingham, with its community neurology service, which is providing access to a wide range of professionals—specialist nurses, social workers and allied health professionals—to provide effective support and rehabilitation.
Nursing and the role of specialist nurses has been a strong theme in this afternoon’s debate. The Government recognise the valuable contribution made by nurse specialists. However, it remains our view that local providers must have the freedom to determine their own workforce based on local clinical need. We must remember that commissioners will be commissioning for good outcomes. The commissioning groups, led by clinicians, will recognise that nurse specialists have an essential role in improving outcomes and experiences for patients. Again, Neurological Commissioning Support is already proving a powerful advocate for specialist nurses.
The noble Baroness, Lady Pitkeathley, stressed the role of social care. As she knows, we have set out a broad agenda for reform in social care. We want to see care that is personalised; offers people choice in how their care needs are met; supports carers; has a skilled workforce who provide care and support with compassion and imagination; and offers people the assurances they expect of high-quality care and protection against poor standards and abuse. We have been working with stakeholders to look at the fundamental issues for reform in social care, such as improving quality, developing and assuring the care market, integration with the NHS and wider services, and personalisation.
I turn to some of the questions that were posed in this debate. I suspect that there were rather too many for me to answer now. I will, of course, happily follow them up in writing. The noble Lord, Lord Dubs, set us thinking about how clinical advice will be infused into the NHS. He asked whether there would be a lead for neurological conditions in the department and a long-term conditions strategy. The NHS Commissioning Board will determine the clinical advice and leadership to support the five domains of the outcomes framework to which I referred. That, of course, includes long-term conditions. A long-term conditions strategy is in development. It is in its early stages but it will certainly seek to address a wide range of long-term conditions, including neurological conditions.
The noble Lord asked about a national strategy for neurology. We have approached the task of driving up quality from a different angle. NICE quality standards will be commissioned, and I have already mentioned some of them. The NHS Commissioning Board will be tasked with issuing commissioning guidance based on those standards. Local commissioning to meet the needs of the community will address the domains in the outcomes framework. Health and well-being boards will conduct joint strategic needs assessments and produce health and well-being strategies to make sure that the needs of patients are properly prioritised. Local healthwatch and HealthWatch England will be the patients’ watchdogs and the local and national voices speaking up for patients.
Commissioning by clinical commissioning groups does not mean that individual groups will have to commission every service. They can commission collaboratively, as I have mentioned, if that makes sense for them. Commissioners will be supported by clinical networks advising on single areas of care, and the new clinical senates in each area of the country will provide multiprofessional advice on local commissioning plans.
As regards having an advisory group for neurological conditions within the Commissioning Board, we understand that the board will put in place arrangements for clinical advice. One of the domains in the outcomes framework is concerned with the management of long-term conditions, and it would be natural for the board to reflect that in its structure. As regards a national clinical director for neurology, that will be a decision for the board, but it shares my desire for continuity and for ongoing improvements in the care and support of those living with these conditions.
The noble Baroness, Lady Gale, mentioned the value of clinical audits. I agree with her that they are of considerable value and my department regularly reviews the programme, within what we call HQIP. More than one noble Lord, including the noble Lord, Lord Dubs, and the noble Baroness, Lady Thornton, spoke about the number of neurologists, which is of course important in these complex and specialised areas. At the time of the last NHS workforce census in September 2010, there were 1,139 neurologists and 650 neurosurgeons employed in the NHS in England. To better understand the future demand for medical staff and to develop supply strategies to meet this demand, the Centre for Workforce Intelligence provides an assessment of medical supply and demand by specialty, region and care pathway. In August 2011, the centre published its second report on the medical workforce, which included a series of factsheets for each medical specialty, including neurology.
As we hope and expect from her, the noble Baroness, Lady Pitkeathley, rightly praised the role of carers. As I hope she knows, the Government are committed to supporting carers, who have a higher profile than ever before. We set out our priorities for action over four years, focusing on what will have the biggest impact on carers’ lives, in our document Recognised, Valued and Supported: Next Steps for the Carers Strategy, published just over a year ago. We are currently considering what more we can do for carers in the light of the recommendations made by the Dilnot commission on the funding of care and support, and by the Law Commission on the reform of adult social care. We will set out our full proposals for reform of adult social care in the White Paper in the spring.
As regards continued financial support for carers, we recognise the factors that the noble Baroness mentioned about rising costs of living. This again was a subject that we covered in our carers’ strategy last year. We reinforced some key messages in the NHS operating framework for next year. That reaffirms our commitment to supporting carers, including setting out specific requirements for PCT clusters to plan to support carers. The Government have set out further guidance to PCTs on funding carers’ breaks. The information available to carers is also important, as the noble Baroness emphasised, and the gateway for this is through primary care and the strategy. It is emphasised that primary care should support people who are carers or who fulfil that role, even if they do not identify themselves as such. On the Dilnot report, which we debated at some length, the noble Baroness knows that our engagement exercise to inform the future of social care has just ended. That has been extremely valuable. We will continue to work with leaders from the sector to develop policy proposals for the White Paper.
My noble friend Lady Gardner, the noble Lord, Lord Monks, and others spoke about multiple sclerosis and improving the quality of care for those patients. NICE routinely reviews its published guidance to take account of new evidence. Following consultation with stakeholders, NICE announced on 22 June that it plans to update its clinical guidelines. The review will consider new evidence identified in a number of areas which may change NICE’s current recommendations on the diagnosis and management of MS. I do not have a date, because NICE has not yet confirmed when it expects to issue the updated guidance.
The noble Lord, Lord Monks, asked about treatments. Although we strive to ensure that there is national guidance on the most commonly used medicines and treatments, there will always be instances where decisions have to be made locally. Under the NHS Constitution, patients have the right to expect local decisions on the funding of medicines and treatments to be made rationally, following proper consideration of the evidence. In the case of treatments which are not covered by NICE guidance, the local PCT has to decide whether to fund the treatment, based on an assessment of the available evidence and the patients' circumstances.
The noble Lord referred to Professor Richard's report on the extent and causes of international variations in drug usage. That was an extremely informative exercise. The report outlines a number of explanations for low uptake of certain medicines in this country. One was caution and/or scepticism among some neurologists about the benefits of treatment, including long-term effectiveness and concerns about side-effects, which we should not forget. There is also the fact that guidelines on the use of MS treatments are stricter in the UK than in some other countries—for example, the criteria in other countries for the use of disease-modifying therapies are lower. Those are very expensive treatments and we need to ensure that they are used only when they will achieve real clinical benefit. That is why we rely on NICE for its advice.
The noble Lord, Lord Dubs, mentioned Tysabri. That drug has received a positive recommendation from NICE; therefore, the NHS is required to fund treatment for patients whose clinicians consider they should receive that drug and are within the terms of NICE’s recommendation. If it does not fund it, the department expects the relevant strategic health authority to ensure that action is taken.
The noble Lord, Lord Monks, referred to a new drug called Fingolimod. I understand that NICE is currently appraising use of that drug in treatment of relapsing remitting MS and issued draft guidance on 5 August which does not recommend the drug's use. Since then, the manufacturer has proposed a patient access scheme for the drug, and we have agreed that that can be considered as part of NICE’s appraisal.
I have some lines here on stem cell treatments, which the noble Lord, Lord Dubs, mentioned, but I will write to him on that issue, in the interests of time. The noble Baroness, Lady Masham, and the noble Lord, Lord MacKenzie, referred to the especially distressing condition of motor neurone disease. A standard for motor neurone disease was part of the engagement consultation exercise run by the National Quality Board on the proposed areas that will make up the library of standards.
End-of-life care has featured in the debate—quite rightly. We recognise the need to ensure that the care that people receive at the end of life is compassionate, appropriate and supports the exercise of choice by care users. We confirmed our commitment to improving quality and choice in palliative and end-of-life care in the White Paper published in July last year.
We made a commitment in Liberating the NHS: Greater Choice and Control to move towards a national choice offer to support people’s preferences about how to have a good death. We have emphasised that access to good quality palliative care should not be confined to diseases such as cancer. The end-of-life strategy aims to improve care for all people approaching the end of life and includes people with advanced, progressive illness and the care given to them in all settings.
The noble Baroness, Lady Thornton, spoke about epilepsy. Here, the long-term conditions delivery support team developed a resource pack for the commissioners that brings together relevant documents and information from a variety of sources to support the development of epilepsy services. This includes information for commissioners on avoidable epilepsy-related death, which has been provided by Epilepsy Bereaved, the leading voluntary organisation in the UK working to prevent SUDEP. The NHS outcomes framework offers a number of opportunities for improvements at this area.
Spinal injury was a theme taken up by the noble Baronesses, Lady Hollins and Lady Masham. As they know, eight centres in England provide specialised care and treatment for patients with spinal cord injuries. I agree with the noble Baroness, Lady Hollins, that these centres have a key role, not only in acute care, but throughout the lives of paraplegic and tetraplegic patients.
There are no plans to establish any further specialised centres at this stage. It is currently the responsibility of regional commissioners and the individual centres to ensure that they are able to meet the needs of the populations that they serve.
I will need to write to noble Lords on continuing care, which is another subject that has arisen. I acknowledge that this is a source of concern, but the issue is quite complex. In the present system, eligibility for NHS continuing health care is determined based on individual assessment of need; it is not condition-based. There is a single national framework for determining eligibility but, as I say, this is a subject on which I shall write.
The noble Baronesses, Lady Hollins and Lady Masham, and the noble Lord, Lord MacKenzie of Culkein, spoke about the poor quality of wheelchair services. They are correct, which is why we believe that commissioners should be free to identify where choice and competition could have a role in improving services for patients. It is one of the services selected for Any Qualified Provider. I say to the noble Lord, Lord MacKenzie, that this is a good example of where third-sector organisations and social enterprises could make a real difference. We want to encourage that.
Time has moved against me, despite the fact that I have much more to say. I thank all noble Lords who have spoken. I undertake to follow up all the issues that I have not been able to cover; in particular, I am conscious that I have not addressed the pertinent issues raised by the noble Lord, Lord Macdonald, about dystonia but I shall do so in writing. With that, I thank all noble Lords for what has been a richly interesting and informative debate.
My Lords, I thank all noble Lords who have contributed to the debate. I was very impressed by the level of commitment, knowledge and professionalism that was shown by everybody who spoke. I have certainly learnt a lot, although I did a lot of homework before the debate began.
I thank the Minister for a very thoughtful reply; I am not saying that I agree with every word of it. I know that he has been extremely busy almost every day of the week, so I am particularly grateful that he found the time to give us his response to the thoughts that were put forward.
It would be wrong to go into things in detail, but I will pick up one issue: that of nursing. There were many important issues, but it seems to me that the common comment on nursing made by almost everybody was the important part that specialist nurses play in helping and supporting people with neurological conditions. Allied to that was the comment that nurses probably save the rest of the health service quite a lot of money. Perhaps I should not enter a new thought into the debate when I am just saying thank you to people, but I make a plea to the Minister to assess whether more nursing support would not actually be beneficial to the health service in financial terms as well as enormously helpful to the very vulnerable people on whose behalf we have been debating today.