Health: Parkinson’s Disease

Baroness Hussein-Ece Excerpts

Monday 10th January 2011 Lords Chamber

[Baroness Hussein-Ece]

My Lords, I congratulate the noble Baroness, Lady Gale, on securing the debate. I also pay tribute to the tireless work that she has done in chairing the All-Party Parliamentary Group for Parkinson’s Disease, which is a disease that, like other long-term conditions, can have a devastating impact on patients and their families. As we have heard, one person in every 500 has Parkinson’s, which equates to about 120,000 people in the UK.

Like those who suffer from other progressive neurological conditions, Parkinson’s sufferers and their families are entitled to a standard of care and treatment no matter where they live in the UK. When the national service framework for long-term neurological conditions was published in 2005 after considerable consultation with patients and groups, the framework was very much welcomed because it set out 11 quality standards with the aim of reducing differences in the treatment, care and support for people with long-term conditions—including Parkinson’s disease—to ensure that their care is more accessible and better co-ordinated.

The national service framework applies to health and social care services that work with local agencies involved in supporting people to live independently. Such services include providers of transport, housing, employment, education, benefits and pensions. When the framework was first published, a main target was to reduce emergency bed days by 5 per cent by 2008 through improved care in primary and community settings for people with long-term conditions. As we have heard, there are places in the country where the target has been met successfully—for example, in north Devon, the provision of a Parkinson’s nurse has helped to reduce emergency admissions by 66 per cent—but that has not happened in other places. Will the Minister perhaps comment on the accessibility of such specialist nurses around the country?

Patients with Parkinson’s disease continue to suffer delays in diagnosis and in access to specialist treatment because of appalling gaps in NHS care, as the All-Party Parliamentary Group for Parkinson’s Disease report mentions. The report also found severe inequalities in access to services across the country. At the time, there was a chronic shortage of specialist nurses. The report blames Ministers and health service managers for a lack of leadership on neurological services at national and local level.

Another concern is about access to appropriate services for people living in care homes and for black and minority ethnic groups. Does the Minister have any evidence to suggest that the situation for such people has improved?

In June 2006, the National Institute for Health and Clinical Excellence issued implementation advice to accompany clinical guidelines on diagnosis and management in primary and secondary care settings, in particular for primary care trusts and acute trusts. The advice also set out what support is available to help people with a condition to cope and how to plan for the future, with aims such as establishing individual care packages, establishing lines of communication, building support for the patients and looking out for any complications.

On care plans, which I think are very important, my previous experience from working in the NHS was that many patients were not really aware that the care plan belongs to them—they own it—and that they should have a copy of it. They should be able to take it home and share it with their families and relatives, but that is not always the case. Given that people are now living much longer with these long-term neurological conditions—indeed, people are living longer generally and are therefore more prone to developing such conditions—are care plans being reviewed to take that into account? Are care plans updated regularly? A patient’s needs and conditions will change and vary quite radically over the years, but the care plan might not always be updated to reflect that. That is one of my concerns.

Other problems cited by the all-party group’s report include poor access to therapy services, which has already been mentioned, and a lack of information for patients about what services are available. The limited provision of respite care is also an issue.

The NICE guidelines set out the importance of access to occupational health services and other allied health professionals. The key principle must be that it is important to treat the patient rather than just the condition because everyone is different and everyone has different circumstances. By doing that, we could prevent unnecessary deterioration and thereby reduce the burden on the health and social care system. Is the Minister satisfied that, in line with the NICE guidelines, patients have access to the full range of services, regardless of their postcode?

Finally, I pay tribute to Parkinson’s UK, which has been at the forefront of campaigning for greater research and information on the disease and on treatment and therapies for patients living with Parkinson’s disease.

People with Parkinson’s disease deserve the right to access the essential services that they need, notwithstanding the inevitable budget cuts and other restraints on local authority budgets. There are concerns that the eligibility criteria will be tightened in some councils, as has already happened over the years, and that the criteria will differ from council to council. Does the Minister agree that standards should be set for such eligibility criteria, given that it does not seem fair that the criteria for people living in one borough might be tightened to a greater extent than in another borough next door with the result that people might not be entitled to the level of support in social care services on which they rely?