Health: Neurological Services

Lord MacKenzie of Culkein Excerpts

Tuesday 20th November 2012 Lords Chamber

[Lord MacKenzie of Culkein]

My Lords, I join in the thanks to my noble friend Lady Ford for securing this important debate on neurological services. I have spoken in a number of debates on this subject over the past five or six years. I have an interest, partly as a nurse but more specifically because a few years ago a very close friend and colleague of mine died from motor neurone disease. After diagnosis he had good support from the health and social care professionals as well as brilliant support from St Raphael’s Hospice in the London Borough of Sutton. It was a very different story for another colleague of mine, whose father’s care before his death was nothing short of scandalous, with health and social services unable to get their act together, either within each service or between the two services. Those are two stories in different parts of the country—the postcode lottery—so I hope that I can be forgiven for concentrating, like the noble Baroness, Lady Masham of Ilton, on motor neurone disease.

I pay tribute to the Motor Neurone Disease Association for its untiring support for those living with motor neurone disease and for its funding of cutting-edge research into this miserable, rapidly progressing and ultimately fatal disease. I suspect that it is going to be a long time before we have a world free of motor neurone disease and, until that time, we need to concentrate on the best possible care for those living with it. It is to be welcomed that the Government have added improving the experience of care for people at the end of their lives to the new mandate issued to the NHS Commissioning Board in the past few days. That is good so far as it goes. It is perhaps not surprising that there is no specific reference to motor neurone disease in the mandate, but I was confident that there would be some reference to neurology. If there is one, I am afraid that I have missed it.

I find that omission to be surprising to say the least, given that, as has been said, there are something like 8 million people with neurological conditions in this country and about 500,000 new diagnoses each year. According to the Neurological Alliance, the cost to the National Health Service is some £4.3 billion each year, with social care budgets adding another £2.4 billion. That is a lot of money, but it is not surprising when almost 20% of hospital admissions are for neurological issues. Emergency admissions under this heading in the five years up to 2009-10 increased by 32% compared with 17% for the National Health Service as a whole. That does not sound to me as if there has been progress.

A great many conditions are wrapped up under the heading “neurological conditions” and these in turn get wrapped up, it seems, in the generic description “long-term conditions”. Motor neurone disease is not a long-term condition. The average lifespan after diagnosis is 14 months. So what needs to be done? It would be good if the Government were to revisit the reports of the National Audit Office of December 2011 and the Public Accounts Committee of March 2012. It is particularly disappointing that the Government have rejected the advice of the PAC relating to the appointment of a national clinical lead for neurology. Quite frankly, it is difficult to understand. Neither have the Government accepted the advice to mandate the commissioning of neurological illnesses. We know that national clinical leadership works. It has done a great job in, among other things, driving improvements on strokes and cancers. It is now essential that this is done for neurological conditions, so that improvements are driven there as well and can lead to a far greater visibility for neurology.

If there is a lack of visibility for neurology generally, specific conditions such as motor neurone disease are hardly on the horizon. Most general practitioners will see one case, perhaps two cases, if that, in a whole career, but five persons die from motor neurone disease every day and there are probably 5,000 living with motor neurone disease at any one time in the United Kingdom. It is notoriously difficult to diagnose—it can be done only by excluding every other possibility—and rapidly progresses, to the extent that 18 health or social care professionals can be providing care at any one time. Anyone with any appreciation of motor neurone disease must know that it cannot be dealt with by a one-size-fits-all approach to long-term conditions.

It is good that the National Institute for Health and Clinical Excellence has been asked to develop clinical guidance and a quality standard for the rarer neurological diseases, but is that likely to be forthcoming in the near future, or is it at the tail end of the very long list of quality standards that NICE has been asked to develop? Perhaps the Minister can tell us about that.

Any delay, together with the absence of a national clinical lead, certainly gives me no confidence in the effective commissioning in the new National Health Service of the complex services necessary for motor neurone disease so that we can get away once and for all from the fragmentation, lack of co-ordination and postcode lottery. The present situation is not good enough; indeed, it is unacceptable in 21st-century health and social services. It is self-evident that there is an urgent need for NICE to expedite its guidance and quality standards for motor neurone disease.

These poor, fragmented care pathways, including emergency admissions to hospital, together with the lack of access to palliative and respite care services, can double or triple the costs per patient per year from the estimated £200,000 that good care costs. There is a clear imperative to get this right. It is a classic case where what is best for the patient is also good for the taxpayer.

In summary, can we have as a matter of urgency a national clinical lead for neurology, the mandating of the commissioning of neurological conditions and, I stress again, the expediting by NICE of clinical guidance and quality standards for the rarer neurological conditions? I very much look forward to hearing what the noble Baroness will tell us about the way forward and again thank my noble friend Lady Ford for giving us this opportunity to discuss this important matter.