Health: Parkinson’s Disease

Baroness Gale Excerpts

Monday 10th January 2011 Lords Chamber

Asked By

[Baroness Gale]

To ask Her Majesty’s Government what is their response to the recommendations of the report of the All-Party Parliamentary Group for Parkinson’s Disease, Please Mind the Gap: Parkinson’s Disease Services Today.

[Baroness Gale]

My Lords, I declare an interest as chair of the All-Party Group for Parkinson’s Disease and as a member of the charity, Parkinson’s UK. Parkinson’s is a long-term neurological condition and can be hugely debilitating. The fluctuating yet progressive nature of the condition means that symptoms can vary from day to day and even from hour to hour. Access to the right health and social care can make a huge difference to people with Parkinson’s. It can enable them to live a more independent life for longer and preserve dignity and quality of life. With the right support, people can hold down a job and continue to lead a full life. When the necessary complicated medicines regime is carefully managed, symptoms can often be minimised.

In 2009, the All-Party Group for Parkinson’s Disease conducted an inquiry into access to health and social care for people with Parkinson’s, with the support of Parkinson’s UK. I thank the noble Lord, Lord Walton, for his excellent contribution to the inquiry panel. It brought to light stark inequalities in Parkinson’s services across the UK. We found that a postcode lottery dictated people’s chances of receiving the support they need. This included seeing a specialist Parkinson’s nurse, access to professionals such as physiotherapists and speech and language therapists, and ongoing review and rehabilitation. For instance, at that time more than one in four people with Parkinson’s had never seen a Parkinson’s specialist nurse, yet they can cut hospital admissions by 50 per cent. Although the number of nurses has substantially increased since then, mainly due to sustained investment by Parkinson’s UK, it is vital that we do not see numbers fall back to the unacceptable low level. The inquiry found that half of people with Parkinson’s had never seen a physiotherapist, whose treatment can avoid falls and injuries.

Worryingly, new threats to physiotherapy are emerging across the country. Some posts left vacant by retirement are not filled, leaving local people with Parkinson’s without one of their most valued services. The previous Government put in place the national service framework for long-term neurological conditions, which set out key requirements for health and social care. The Department of Health is sending conflicting messages about the future of this framework. When will a decision be made? Can the Minister assure me that, if it goes, it will be replaced by something sufficiently robust?

This brings me to the likely impact of the Government’s health White Paper. Some of the language used by the Government suggests that “localism”, “choice” and “innovation” are more important than equal access to best treatment. Regional difference, we are told, is a good thing, driving up standards through competition. Consider that from the point of view of someone with Parkinson’s, living in an area with no Parkinson’s nurse, little access to a neurologist and no available physiotherapist or speech and language therapist, where people have to argue their case to receive NICE-approved treatments. Meanwhile, in the PCT next door, or perhaps a neighbouring GP consortium, services are much better. This approach simply seems unfair; will it drive up standards?

One area of concern is the decision to give GPs more power over commissioning. Most GPs have limited knowledge and experience of Parkinson’s disease. They typically have just one or two patients with Parkinson’s on their books. With a highly complex condition such as Parkinson’s it is clearly necessary for decisions to be taken at a wider strategic level. Within the new structures outlined in the White Paper, the only way to ensure a comprehensive approach to commissioning high quality Parkinson’s services is for the NHS commissioning board to have responsibility for this and to provide clear and specific commissioning guidance and outcomes for Parkinson’s services. To ensure we have high quality Parkinson’s services, we need specific, evidence-based quality guidelines and outcome measures. In other words, the Government must provide a standard against which patients can measure their service and, if services fall short, there should be robust mechanisms to hold providers and commissioners to account.

What assurances can the Minister offer that patients, including those with disabilities or conditions such as Parkinson’s, will be supported to seek redress in a meaningful way? One idea is that people with long-term conditions should be represented on the proposed health and well-being boards. Can the Minister say something about that?

The provision of moneys for social care is another area of concern. Local authorities say that the £2 billion for social care will fail to plug the hole left by the 28 per cent cuts they are facing over four years, compounded by the pressures of an ageing population. Further, freed from ring-fencing and national audit, there is no guarantee that moneys will be spent as intended. Councils are already cutting back by changing eligibility criteria so that only those with the most critical needs receive support. Many people with Parkinson’s and other conditions already find services inadequate. A resident of Cumbria told our inquiry:

“My only involvement with Social Services was [with] regards to a seat for the bath and I had to wait 16 weeks for this”.

Another strong message from our inquiry was that more needs to be done to support carers. One carer told us:

“It is difficult to put into words the feeling of abandonment and loneliness I feel ... Carers have enough to cope with without the constant battle to get some attention for their loved ones”.

I welcome the Government’s refreshed set of priorities for carers. In particular, PCTs are being given £400 million for carers’ breaks over the next four years, which I hope will benefit some of those who care for people with Parkinson’s and other conditions, often with very little support or respite. Who will ensure that this money is spent as intended? Another concern is that the removal of ring-fencing will make the allocation of carers’ funding to local authorities much more opaque. To ensure transparency, the Government should at least publish the nominal amount each council has received through the carers grants.

Given the current necessity to spend limited funds wisely, in the case of Parkinson’s, quality care is proven to be cost effective. Will the coming changes mean that some areas will lose their Parkinson’s nurses? Research has shown that such nurses can reduce hospital admissions by 66 per cent, which could be saving the NHS in England approximately £7.5 million.

If the Government are committed to reducing health inequalities, I urge the Minister to consider the report of the All-Party Parliamentary Group for Parkinson’s Disease, whose findings are drawn from expert evidence from more than 360 people with Parkinson’s as well as from their carers, health and social care professionals and key organisations. The report finds that huge inequalities exist in access to the care and support that are needed by people with Parkinson’s and by their families and carers. I hope that the Minister will agree that access to the right services should not depend on where people live.

On behalf of everyone affected by the condition, I urge the Minister to do all that he can to ensure that there is a strategic, comprehensive approach to commissioning Parkinson’s services that is underpinned by robust quality standards and by an effective, accessible system that will allow local people to hold services to account. I understand that the NHS commissioning board and GP consortia will have a statutory duty to reduce inequalities in healthcare provision.

My final question to the Minister is how he envisages reducing geographical inequalities in service provision, including for those with Parkinson’s. I look forward to the Minister’s response, and I thank all noble Lords who are taking part in this important debate tonight.