Health: Neurological Services

Baroness Wheeler Excerpts

Tuesday 20th November 2012 Lords Chamber

[Baroness Wheeler]

My Lords, I too would like to thank my noble friend Lady Ford for initiating this debate. Like others, I pay tribute to her work as honorary president of Epilepsy Action and as a campaigner for improved services for people with neurological conditions. As usual, we were fortunate in this debate to have contributions from noble Lords with huge experience and expertise in this field, either as medical experts themselves or from working with health and social care professionals and expert organisations, institutions and community groups that provide such vital support for patients, clients and their carers. The debate is very valuable, because we know that we need a more holistic approach to the provision of neurological services if the barriers to progress are to be overcome and large-scale, consistent improvements are to be made at the urgent pace necessary.

Noble Lords have spelt out the facts and figures, issues and concerns very comprehensively, covering many of the specific conditions. On epilepsy, my noble friend Lady Ford drew a wide-ranging picture of the challenges to improving services and of what could be achieved given the political will to make those improvements happen. Both the noble Baroness, Lady Masham, and my noble friend Lord MacKenzie spoke of motor neurone disease—my noble friend referring to our wonderful mutual friend and work colleague who succumbed to this terrible disease, which kills an increasing number of people year on year. My noble friend Lady Gale focused particularly on Parkinson’s disease. The stark fact is that every hour, someone in the UK is told that they have this degenerating disease. The noble Lord, Lord Patel, asked some key questions about the real progress being made since the last debate, and I look forward to the Minister’s response to them.

I thank the Neurological Alliance, Epilepsy Action, the MND Association, Parkinson’s UK and the Sue Ryder charity for their excellent briefings for this debate. It is clear that much still needs to be done to allay the fear and confusion among people with neurological conditions, staff and their carers and the organisations providing support and care for them about how the new NHS structures will work, particularly the process and outcome of commissioning for neurological conditions across health and social care.

The two recent debates in your Lordships’ House on epilepsy and long-term neurological conditions and the important role played by the NHS and social care allied health professionals both took place in the early days of this Government, before we began on our marathon deliberations on the Health and Social Care Bill. Substantial reductions in both NHS and social care resources are starting to have a major impact. There is massive upheaval in the NHS as the new structures come in. Many CCGs are still in the early stages of development and are only just beginning to decide how commissioning will take place in their areas. We know that, despite Government denials, the NHS is having to make substantial cuts in resources that have already led to the loss of 6,000 nurses—including the deletion of specialised nursing posts—and the closure of many services.

In social care, many local authorities have had to make dramatic cuts to services and do not have systems in place to cope with the scale and quality of care that is needed. The recent Sue Ryder report on social care, The Forgotten Millions, spells this out quite vividly. This found that only 10% of local authorities had an agreed commissioning strategy for people with neurological conditions and only 6% categorised all specific neurological conditions.

I would quickly like to pick up on some common themes from today’s debate, starting with the issue of preventable early deaths. In epilepsy, for example, estimates show that one in three deaths is avoidable and that mortality is two to three times more than in the general population. We saw last week the publication of the Government’s NHS mandate, promising “measurable progress” against the NHS outcomes framework, rather than specific targets to reduce premature deaths or enhance the quality of life for people with long-term conditions. Will the Minister tell us, for example, how progress in reducing the number of avoidable deaths of people dying from epilepsy as a result of late diagnosis or misdiagnosis is to be measured across the two NHS outcomes domains?

Last week, my noble friend Lord Hunt expressed his concerns that the mandate was a wish list. I see that the Independent echoed this sentiment, describing it as,

“worryingly short on specifics and suspiciously free of concrete commitments”,

as well as giving,

“the unmistakable sense of a Minister expertly ensuring that he would not be blamed for any failings come the election”.

Perish the thought.

Secondly, noble Lords have underlined the need for expert commissioning for services, involving those with knowledge and experience of the treatment and nursing and care needs of patients and clients. Clarity over how services are to be commissioned in the future is urgently needed. During the mandate debate, we were promised regulations on exactly what “conditions”, “specialised conditions” and “highly specialised conditions” are. It is hard to see how commissioning planning either at national Commissioning Board level or CCG level can proceed effectively without the Government being clear and definitive about this. Will the Minister tell us when we can expect the regulations? Will they spell out exactly how the Commissioning Board is to provide leadership and direction on this matter?

Thirdly, there is evidence that the number of specialist nurses for neurological conditions is diminishing, not increasing—this when their role and cost-effectiveness is widely acknowledged and recognised. Parkinson’s, motor neurone, MS and epilepsy nurses, for example, make a huge difference by being a focal point of advice and support for patients and their carers; they signpost and provide important access to a range of therapies and other services.

With their support, people stay independent for longer, are better able to manage their own conditions, and the number of unnecessary hospital and care home admissions is reduced.

However, we know that we will be told by the Minister that provision is down to decisions made by local CCGs, hospitals and local authorities. Does the Minister accept that the provision of specialist nurses is an essential element of care for people with specific neurological conditions, including dementia and stroke? What action will the Government be taking to ensure that the number of posts is maintained and increased?

In the time left, I should like to highlight the often forgotten but vital importance of effective and dignified continence care for people with long-term conditions and its need to be integrated into care and treatment pathways. The noble Baroness, Lady Masham, touched on that issue. As I have stressed previously, this requires specialist knowledge and understanding of the different needs of continence care in primary and secondary care settings, and a joined-up approach across the full care pathway. We know that the system is too often slanted towards containment through pads and catheters rather than assessment for treating incontinence. We also know that these types of services have been undercommissioned in the past. Is the Minister confident that CCGs and social care will have the specialist knowledge to ensure effective and consistent commissioning of this service? What work has been undertaken by the Department of Health on this issue?

Finally, the need for an integrated, overall strategy for neurological diseases, which joins up and integrates provision with that for the higher profile conditions such as dementia and stroke, has been underlined. Does the Minister accept that the NHS Commissioning Board needs to show leadership on this issue, as called for by the report published by the Commons Public Accounts Committee earlier this year? Getting back to the NHS mandate, will she spell out for those of us who are still very confused how Ministers will account to Parliament over performance of the mandate generally and the provision of services for neurological diseases in particular?