Health: Neurological Conditions

Baroness Gale Excerpts

Thursday 8th December 2011 Lords Chamber

[Baroness Gale]

My Lords, I congratulate my noble friend Lord Dubs on securing this really important debate today. Many noble Lords will be familiar with the condition of Parkinson's disease, for which there is no known cure. When one is diagnosed with Parkinson's, one has it for the rest of one's life and has to adjust to one's new life. That is why research needs to continue and must not be the victim of cuts. It was reported in the national press at the weekend that academics claimed in a study that they feared that the cuts would prevent or cut back on research into Parkinson's and other diseases. I hope that that will not happen, otherwise further delays will be inevitable in finding a cure for Parkinson's and other neurological conditions.

People with Parkinson's need a range of health and social care support, which will change as the condition progresses. I will highlight a few of these areas today. The APPG on Parkinson's, which I chair, carried out an inquiry in 2009 and later published its findings in a document entitled Please Mind the Gap: Parkinson's Disease Services Today. The report highlighted disparities across the UK in access to support by people with Parkinson's. Two years on, gaps still exist and I am concerned that the current upheaval in the NHS in England, combined with the financial pressures, could exacerbate the situation.

The charity Parkinson's UK runs an audit each year in collaboration with the Healthcare Quality Improvement Partnership to see whether NICE guidelines for Parkinson's disease are being adhered to. The results are reported in the quality account of each trust and are an excellent way to see if evidence-based standards of quality care are met across the country. The audit has revealed gaps, but the tool provides a way for primary care trusts to measure the areas for improvement. Currently the HQIP is conducting a consultation on which audits will be incorporated into the quality accounts for 2012. If audits such as that for Parkinson's are not included, it will be a backwards step in promoting quality. Clinical audit is one of the most effective ways to measure where standards are being met and to look for service improvements. There is a risk that trusts will only prioritise those they are required to complete and that others will not take place. The National Audit Office has recently conducted an audit to see if services for progressive neurological conditions represent good value for money. The findings are expected to be released soon and will provide an assessment of the support for people with neurological conditions.

Several noble Lords mentioned the value of specialist nurses. I will mention Parkinson’s nurses. Parkinson's UK has invested more than £12 million to pump-prime specialist Parkinson's nursing posts across the UK, demonstrating its commitment to improving standards of care within the NHS. However, 20 per cent of PCTs still have limited or no coverage. Losing community-based Parkinson's nurses could cost the NHS up to £19.5 million in increased admissions and demands on consultant time. Losing hospital-based Parkinson's nurses could cost the NHS up to £15.6 million in longer times spent in hospital. Employing an extra 60 Parkinson’s nurses would provide adequate access across the UK and could save £7.1 million.

Clinical commissioning groups need support and guidance to commission good-quality Parkinson's services that are cost-effective. This support needs to come from networks and clinical senates that understand Parkinson's and can advise clinical commissioning groups about what is needed. Will the Minister give a commitment to support clinical commissioning groups by ensuring that there are neurology networks across England and neurology specialists on clinical senates?

Continuing care is a vital package of care that is arranged and funded by the NHS and is free of charge to the person receiving the care. The decision on eligibility rests not on the condition but on whether the need for care is primarily owing to health needs. My concern is that, in these austere times, decisions could be influenced by financial concerns rather than solely by clinical criteria. It seems that there is an increase in cases being assessed as social care needs, rather than as healthcare needs. Of course, one of these is free for the person with Parkinson's and the other can be highly expensive. A national support tool exists to help score someone's health needs, but it is not sophisticated enough for a condition such as Parkinson's or for the side effects of Parkinson's medication. There is also a lack of awareness of Parkinson's among some assessors. People with Parkinson's and their families report inadequate periods of time for the assessment, resulting in a false impression of the person. Judgments can be made on nursing home or hospital notes that do not adequately reflect the person's symptoms and fluctuations. Will the Minister agree to conduct a review of this tool so that it does not disadvantage people with progressive and fluctuating neurological conditions?

Budgetary considerations mean that there is little incentive for the NHS to tell people about their rights to continuing care, nor has the NHS any incentive to make timely decisions once someone has applied for NHS continuing care. If a person's case is rejected, the appeals and tribunal processes can be lengthy at a time when a person may be at their most vulnerable. There are cases that have been in the system for over three years.

Many people with Parkinson's face having their continuing care funding withdrawn in the later stages of their illness. The reason given is often that their decline is now predictable or that they have stabilised despite the severity of their situation. It seems to me that this is a total contradiction to the families involved, who are bearing witness to a distressing and progressive loss of function in their loved ones. Reports suggest that PCTs are instigating reviews not because of a change in health needs but because of budgetary constraints. Funding is then withdrawn following reassessment. The reason given is that presenting health needs are deemed to have stabilised despite the severity of the condition or that their decline has become predictable. This is despite the decision support tool for NHS continuing healthcare noting that well managed needs are still needs. The King's Fund and the Alzheimer's Society have recently reported a similar pattern of decisions in respect of people with dementia. Will the Minister agree to consider this difficult matter of continuing care and to make it clear to all concerned that people with an advanced degenerative health condition should not have their continuing care or nursing care contribution packages withdrawn on the basis that their decline in health is predictable or that the condition has stabilised? At the same time, will he clarify who will undertake eligibility assessments and appeals for continuing care under the new system and consider how it will ensure that decisions are person-centred and made independent of budgetary constraints?

I think a theme has been developing over the course of noble Lords’ contributions today. I know that people are fearful and worried in today’s climate. I hope that the Minister can give some assurances on this. People with progressive neurological diseases have enough worries about their illnesses. They need reassurance that they will be able to get, for example, the support of the specialist nurses they need. This makes good economic sense, and I hope the Minister will consider this and can reassure people with these conditions that we can alleviate at least some of their worries.