Health: Neurological Conditions

Baroness Thornton Excerpts

Thursday 8th December 2011 Lords Chamber

[Baroness Thornton]

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.