Health: Neurological Conditions

Lord MacKenzie of Culkein Excerpts

Thursday 8th December 2011 Lords Chamber

[Lord MacKenzie of Culkein]

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.