More MS news articles for Aug 2001


Opening Speech - full debate at:

Westminster Hall

10.59 am

Mr. Paul Burstow (Sutton and Cheam):

I suspect that this is the first debate on neurology in the House for many years, and possibly ever. I have not double-checked that with the Library, but the House does not seem to have given much consideration to services provided to people with neurological conditions. On the day that I received notice from the Speaker's Office that I had secured the debate after several weeks of applications, I was delighted to hear that the Secretary of State for Health had declared the Government's intention to draw up a national service framework for long-term health conditions, with a special focus on neurological conditions.

Three million people in the United Kingdom suffer from neurological conditions--only heart disease and cancer affect more people--and one in five of all admissions to medical wards are accounted for by acute neurological cases. Despite those facts, neurology has been something of a Cinderella service in the national health service--in part because until recently little could be done beyond diagnosis and amelioration of symptoms. However, that is changing, so now is a good time to have a debate in this Chamber and to turn the spotlight on neurological services with the aim of raising them to the standard of the very best NHS services. We need to improve the standard of excellence in neurology across the whole country, so that everyone has access to good quality services on a level playing field.

Neurological conditions result from damage caused by illness or accident to the brain, spinal column or nerves. They have many causes, many of which are not yet known, and they affect young and old, rich and poor, men and women and people from all cultures and ethnicities. Some neurological conditions, such as epilepsy, are life-long and people can experience their onset at any time of life; some, such as cerebral palsy, are present from birth; some, such as muscular dystrophy, commonly appear in early childhood; and some, such as Alzheimer's disease and Parkinson's disease, affect mainly older people. Certain conditions have a sudden onset owing to accident or illness, such as head injury, stroke or cancers of the brain and spine.

Neurodegenerative conditions, such as multiple sclerosis and motor neurone disease, can affect people at any age and often cause a slow deterioration of a person's quality of life and ability to live independently.

Of those conditions, some can be life threatening, most severely affect people's quality of life and many cause long-term disability. Their impact often extends far beyond the individual concerned, because they have knock-on effects on family members and others who have a caring role. Caring for someone with a debilitating illness is often such an onerous task that carers have to give up their own employment. That, added to the inability of the person with the condition to continue to be economically active, can have a devastating impact on a family's quality of life, financial circumstances and long-term well-being.

Today's debate is not about the needs of carers, but we should bear in mind that they carry a massive burden, especially where neurological conditions are involved, and their role is often unstated, unrecognised and undervalued. It is important to say, however, that some of the Government's initiatives on carers' grants and respite care are making a difference to many of our constituents.

Neurological conditions are poorly understood. Public awareness is low, even of relatively common conditions such as epilepsy. Many rare conditions are largely unheard of and poorly understood, even by non-specialist health professionals. That can lead to problems with the quality of initial diagnosis and the care pathways down which people are directed. My interest in the topic has developed over the past three and a half years. It started with my constituency mailbag, through helping constituents who were battling to be prescribed beta interferon for their relapsing-remitting MS. I approach the debate from a Back Bencher's perspective, having been struck by the patchiness of the provision of services across the country.

There are wide variations in access to services, not only for MS, but for the whole spectrum of neurological conditions.

That interest led me to undertake a survey of NHS trusts last year. I am grateful for the support given to me by the Neurological Alliance, especially Nicky Joules, and for the advice of the Association of British Neurologists in drafting the survey. Their support and advice ensured that the information gained was useful and could inform the debate about how neurological services might be better provided.

I found wide regional variations in access to neurological services--it is yet another postcode lottery. Two out of three patients wait for more than 13 weeks to see a neurologist and the average waiting time in non-urgent cases is 25 weeks. In 44 per cent. of hospitals, patients wait for as long as six months for an out-patient appointment; the worst waits to see a consultant neurologist lasted up to two years. My survey also found that six out of 10 hospitals could not offer a 24-hour response to a neurological emergency. Yet early diagnosis and treatment can make all the difference to a person's chances of recovery and a better quality of life.

The reason that access to services is so patchy is quite simple: there is a lack of capacity, with not enough neurologists to meet demand. I am sure that the Minister will acknowledge that a key bottleneck is the shortage of training places, which are needed to expand the work force and fill vacancies for neurologists throughout the country. My survey found that, on average across England and Wales, there is one neurologist for every 165,641 people. In Wales, the south-west, the north-west and the north-east, the number of neurologists is less than one per 200,000 people.

Recently, a neurologist told me:

"If the UK was to have the same provision of neurologists for the population as the United State there would have to be 2,000 consultants; for the same provision as Europe (excluding the UK obviously) 1,000 would be required. In fact we have just over 200 (allowing for part time academic posts etc). Quite how this situation has been allowed to go on for decades is beyond me; we appear to be where the US and Europe were at the end of WW2. The shortage will take decades to correct."
It is hardly surprising that most patients' groups to which I spoke said that, if it does nothing else, the national service framework must address the serious shortage of neurological consultants. The Association of British Neurologists and the Neurological Alliance recommend that the number of neurologists must rise to a minimum of between 600 and 700--roughly double the current number--if the service is to start to improve.

Access to specialists can make an enormous difference to how an individual copes with diagnosis, especially as the specialist can explain the progression of the condition and the options for treatment. That shortage, however, masks a deeper problem: the shortage of sub-specialists. There are only 60 consultants in the whole country who have specific expertise in Parkinson's disease, and fewer than 40 who specialise in treating MS. The rarer the condition, the scarcer the expertise. I wonder, for example, how many neurologists specialise in progressive supranuclear palsy.

In neurology, access to specialist centres is a key way to make effective use of NHS resources and give patients the chance to receive the best possible care. I hope that the national service framework will address that. The current out-of-area treatment scheme, OATS, is often an obstacle to appropriate treatment. Many trusts have suspended specialist procedures unless they are under contract or being paid for privately. Many patients who have been referred to

Some patients' home health authorities have offered to pay for operations, but trusts refuses to perform them because there is no mechanism for funds to be transferred to them. Occasionally, trusts agree to undertake an operation, but only after much correspondence and often when hon. Members and others have lobbied on the patient's behalf. Operations have been suspended not because of lack of funds, but because of bureaucracy. I hope that that problem can be resolved, because it has put services at risk, and they are being run down. Last April, the Department of Health announced a review of OATS. It will help if the Minister can shed some light on the timing of that review and the publication of its results, so that we can see what reforms are planned and what issues are to be addressed.

In anticipation of the national service framework, I should like to raise a few issues. First, the Department of Health has asked the Medical Research Council for trials to test the treatment of Parkinson's disease through deep brain stimulation therapy. Will the regional specialised commissioning groups have complete responsibility for commissioning specialised neurosurgery? Will that be governed or monitored nationally and will it be reflected in the national service framework in future? Is there a timetable for the trials and will they account for all deep brain stimulation therapy during the trial period? Will those who opt out of them still have access to deep brain stimulation therapy? People with Parkinson's disease and the Parkinson's Disease Society of the United Kingdom will appreciate clarity on those issues.

Secondly, a few years ago, Scope conducted research into the effects of ageing on people with cerebral palsy and found that few sufferers visited their doctors for regular check-ups. The majority had not seen a consultant since leaving school and had not seen a physiotherapist for at least five years. General practitioners, physiotherapists, social workers and occupational therapists are often insufficiently familiar with cerebral palsy and, in short, many sufferers simply give up on treatment in the belief that they cannot be helped. That underlines the fact that the national service framework must address social and primary care as much as secondary and tertiary services. Primary care begins from the time of the initial referral and, alongside social services, has a long-term role after diagnosis.

The third issue relates to multiple sclerosis, which originally drew my attention to neurology. The Minister will know that new and emerging treatments can slow the progress of neurological conditions and may pave the way for even more effective treatments. For most people with multiple sclerosis, the national service framework offers the prospect of improved multi-disciplinary working and enforceable standards of service. However, it will not deliver the improvements that one group is looking for. It appears likely that the National Institute for Clinical Excellence will deny access to disease modifying drugs to all or most people with multiple sclerosis who would benefit. The national service framework holds out the promise of better services for such people once they are disabled, but does not offer the hope of a brake on the progression of their disease.

At 3 o'clock on the day before the Christmas holidays began last year, after most people had gone home to start celebrating, NICE smuggled out an announcement 10 days before its pre-programmed date for the release of the decision from its appraisal committee which effectively kicked into the long grass its decisions on beta interferon. We will not know now whether beta interferon and copaxon will be available on the NHS until July at the earliest, and a final resolution will probably not emerge until even later. That is not acceptable. I hope that the Minister will look closely at the conduct of NICE on that day in December and its behaviour in respect of assessment of treatments. It appears to have ignored the voice of the patients, who have not been allowed to come to the table and express an opinion.

Fourthly, the Minister will know of the value that patients and patients' groups place on access to specialist nurses. The MS Society and the Parkinson's Disease Society contribute to the funding of a growing network of specialist nurses. That network should force us to examine how such nurses are supported, trained and funded in the NHS. While it is welcome that charities make contributions to the funding of such posts--in many cases, they fund them fully--in the long run, the NHS, in the context of neurology, must properly support the service.

The Department is addressing the recruitment and training of specialist nurses and considering how to ensure that commissioning bodies take such matters into account. Will the Minister say what progress has been made in the review of the consideration of specialist nurses? When is that review likely to be concluded? Will it be affected in any way--I hope that it will not--by the national service framework? Time is pressing and clarity is needed sooner rather than later. The national service framework, which will be published in 2005, is welcome, but too far in the future.

Fifthly, I have received strong representations from several groups in respect of pain management in the NHS, about which, as the Minister may recall, the House had a debate last year--although it was held late in the evening and was therefore almost as well attended as today's debate. The issue is important, but not often debated in the House. The point has been made to me forcefully that chronic pain should be included within the national service framework. Given the prevalence of chronic pain in the UK, it is surprising how poorly co-ordinated services remain. At best, a person can hope to be referred to a pain management course after a long wait; at worst, he can find himself being passed around the specialists and offered a range of different medications on a trial and error basis until something turns up that might alleviate the pain.

My final point relates to the prevalence of neurological conditions generally. I mentioned at the beginning of my contribution that 3 million people in this country suffer from neurological conditions, but the truth is that we do not know precisely how many there are, because no method exists for recording the diagnosis of neurological conditions. There is no disease register or systematic means of capturing such information, even though that information would be invaluable to effective research and deepening our understanding of such conditions, and must be central to effective commissioning of services at a local level. As a starting point, the national service framework must include better recording of prevalence in the population, so that we can allocate resources appropriate to need.

Patients' groups have an important role to play in the development of all national service frameworks, not least in the context of the national service framework for long-term conditions. Umbrella organisations play a key role in that work by bringing together the disparate interests that a national service framework often covers. I suspect that that will be the case when the Government and the Department begin their detailed work on the national service framework.

The Secretary of State has given a welcome indication of willingness to provide extra support for umbrella organisations, to facilitate their task of engaging in robust and real dialogue with Government, but it would be useful to know whether the Department and Secretary of State would be minded to provide additional resources to facilitate the involvement of non-governmental organisations in the preparation of national service frameworks. That would be helpful to the Neurological Alliance and other NGOs with interests in other national service frameworks.

As the national service framework under discussion is likely to cut across already existing national service frameworks--especially those covering older people--it will be important to have cross-sector interests represented in the process to deal with those concerns. We must make sure that there are no gaps between the various national service frameworks. It will be interesting to hear how the Government will ensure that such gaps are not created.

I understand that the national service framework is unlikely to be published until 2004, and that it is intended that it will be implemented from 2005. It is essential that the Government's commitment to producing that national service framework in no way derails existing work that will benefit people with neurological conditions. I shall cite three examples. First, in a debate a couple of years ago, the Minister of State, the hon. Member for Barrow and Furness (Mr.

groups on the commissioning of neurological services. Publication of that compendium is a year overdue; when will it be published? It will be an invaluable aid to primary care trusts and others who have a responsibility for commissioning, and the sooner it is being used, the better.

Secondly, the National Institute for Clinical Excellence is to begin work on clinical management guidelines for MS for publication in 2002. I have made some representations about the pace at which NICE intends to proceed. Given the range that must be covered, it is important that its work is not lost within the work on the national service framework. Thirdly, I have referred to the Department considering specialist nurses in neurology; it will be useful if the Minister can say when that work will be promulgated.

The national service framework and the other work that is in train within the Department are welcome. I introduced today's debate because the findings from surveys show that we have a long way to travel to reach the standard of service that the Government and all hon. Members want for people with neurological conditions. We need a people-centred approach that develops services around individuals and builds on the ideas in the national health service plan. We must ensure that an appropriate multi-disciplinary range of services follow people throughout their lives, and that services are at all times tailored to be appropriate to their needs and those of their carers.