Health: Parkinson’s Disease

Earl Howe Excerpts

Monday 10th January 2011 Lords Chamber

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, I begin by thanking the noble Baroness, Lady Gale, for tabling this Question for Short Debate. I very much recognise the considerable personal insight that she brings to this subject, not least as chair of the all-party parliamentary group.

Noble Lords have spoken eloquently this evening about Parkinson’s and the devastating impact that it can have. The all-party group’s report paints a compelling picture of the many failings of the health and social care system: limited information for patients and poor access to expert nursing and therapy services, underpinned by a failure to deliver joined-up services. The previous Government produced a number of policy documents designed to improve services and support people with Parkinson’s disease. The National Service Framework for Long-Term Conditions, to which noble Lords have referred, and the NICE clinical guideline are both strong statements, which this Government support. The problem, made clear in this evening’s debate, not least by the noble Lord, Lord Walton, is that all too often the vision of these documents is not put into practice and areas such as Parkinson’s services find themselves at a disadvantage when competing for attention and resources. We want to put that right. Our reforms to the NHS will ensure that patients have far more information about services, more choice about their treatments and more influence over how healthcare is shaped in their community.

Local Health Watch organisations, building on local involvement networks, will ensure that the views and feedback of patients and carers feed into decisions about local health and social care services. Devolving responsibility for commissioning to GP consortia will mean that decision-making is closer to patients and more responsive to their individual needs. The noble Baroness, Lady Gale, is right: we will have to ensure that GP commissioners are ready and have the skills and awareness that they need to take these decisions. The noble Baroness, Lady Thornton, referred to that matter, as did the noble Baroness, Lady Masham.

As noble Lords are aware, poor commissioning is one of the main reasons for the low quality of some Parkinson’s services and the patchwork quilt of standards about which we have heard. I know that some patient groups have expressed concerns about the skills and knowledge of GP commissioners. The key to this will be creating better care pathways. That is my main answer to the noble Lord, Lord Walton, who expressed his scepticism on this score. We will expect consortia to involve relevant health and social care professionals in helping to design care pathways or care packages for those with Parkinson’s that achieve more integrated delivery of care, higher quality and more efficient use of resources. They should also talk with their local authorities, which will play an increasingly important role in co-ordinating care as we move toward joint commissioning and planning through health and well-being boards. There are certainly opportunities for patient groups to contribute to developing GPs’ understanding of the condition and how to commission for it effectively. Regional neurological alliances, to which a number of noble Lords referred, have an important role to play, working with the NHS and councils, to make sure that patient needs are being met locally.

The noble Baroness, Lady Gale, referred to outcomes. The new NHS outcomes framework will help to deliver care that is safer and more effective and provides a better experience for patients. The outcomes and indicators in the NHS outcomes framework have been chosen specifically to capture the full range of NHS responsibilities. Where appropriate, they are not condition specific, but rather seek to capture those outcomes that an individual with any condition would consider important.

In these financially challenging times, it is important that we make the most of the resources available. Parkinson’s services are a good example of where much more can be done and where inadequate services waste resources. With an ageing population, the number of people with Parkinson’s is increasing and, as the Fair Care campaign highlights, the best way to save money is to deliver good-quality Parkinson’s services when and where people need them.

Better, more effective care does not necessarily mean more resources. Doing things differently, good multidisciplinary teamwork, specialist support, early interventions and care planning can all make a significant difference. High-quality information, combined with the right support, is the key to achieving better care, better outcomes and reduced costs. We have been consulting on a new information strategy to improve the range and quality of information available to patients, professionals and the public, to increase transparency and strengthen accountability in the system.

Good social care is vital for people living with Parkinson’s. It enables them and their carers to live the independent life that most of us take for granted. We want to build a social care system that is fair and sustainable—one that reflects individual autonomy and ensures that everybody is treated with dignity and respect. In November, we published our vision for social care, setting the future direction for adult social care in England. The vision looks at the role of social care in contributing to the development of the big society and includes a new leadership role for local councils to improve preventive services and develop community capacity, which is in part an answer to the question posed by the noble Baroness, Lady Thornton—in other words, inspiring and supporting communities to look after themselves. The vision encourages care and support to be delivered in a partnership between individuals, communities, the voluntary sector, the NHS and councils, including wider support services, such as housing.

Carers exemplify the big society. They provide care and support entirely from their own time and resources. In government, we need to reciprocate this commitment with measures that support carers. Last year, we published an update to the National Carers Strategy—Next Steps for the Carers Strategy. It provides a clear plan of action for the next four years, focusing on what will have the biggest impact on carers’ lives.

A number of noble Lords, including the noble Baroness, Lady Gale, my noble friend Lady Hussein-Ece and the noble Baroness, Lady Masham, referred enthusiastically to the role of specialist Parkinson’s nurses. Specialist nurses provide a very important source of support and advice to patients with Parkinson’s disease and enable many patients to manage their condition effectively. It is of course the responsibility of local health bodies to make decisions on the funding of Parkinson’s nursing posts. The Long-Term Conditions Delivery Support Team has, however, developed a guide to writing a business case for epilepsy specialist nurses for commissioners to use in making the case for improving those services. This guide could be adapted to make the case for specialist nurses for other long-term neurological conditions, including Parkinson’s. The new commissioning arrangements will take all the evidence into account in deciding to what extent specialist nursing will be commissioned.

The noble Baroness, Lady Gale, asked whether all areas will retain their levels of Parkinson’s nurses. We think that localism is the best way of holding local organisations to account. These decisions should in the end be made locally and will be influenced by the important inquiry that she has chaired.

The noble Baroness, Lady Gale, and others referred to the national service framework. While the vision of the NSF reflects that of the White Paper, the new NHS architecture, and particularly the arrangements for commissioning, will render somewhat outdated any lessons learnt from the review. Better outcomes for people with long-term neurological conditions will in future be achieved through the NHS outcomes framework. The framework will enable patients to judge the overall performance of the NHS and to hold the Government to account for progress. Through the Long-Term Neurological Conditions Research Initiative, the department has funded the development of Quality Neurology, a comprehensive audit tool for local health and social care economies to use in assessing their current status in meeting the quality requirements of the NSF for long-term conditions.

The noble Lords, Lord Harrison and Lord Walton of Detchant, referred to GP consortia needing to involve the third sector. I have already referred to this issue. The onus is on regional neurological alliances and patient groups to engage with GP consortia in the first instance. Through the then Section 64 scheme, the department funded the Neurological Alliance to establish a network of RNAs across England. The case for developing a quality standard for Parkinson’s disease will be considered as part of the development of the comprehensive library of standards, in line with the plan set out in the White Paper. The longer-term aim is to develop a broad library of quality standards covering the majority of NHS activity.

The noble Baroness, Lady Gale, and my noble friend Lady Hussein-Ece asked about the status of the NSF for long-term conditions. The Government’s health reforms place outcomes at its heart, as I mentioned. That fits very well with the aspirations of the NSF for long-term conditions. The issue is not the delivery mechanism—in other words, the NSF versus the Government’s health reforms—but, rather, ensuring that services for people with a long-term neurological condition achieve the best possible outcomes.

The noble Baroness, Lady Gale, asked how we can ensure that money for carers would be spent as intended. It is for PCTs and, after them, GP consortia to manage their budgets and make decisions about how best to meet the health needs of their local populations, but we are looking at how we can make decision-making more transparent. That includes using the NHS operating framework, which sets out the priorities for the year ahead and makes it clear that breaks for carers are important. The NHS outcomes framework and the outcomes framework for adult social care will also push for clear and unambiguous accountability in this area.

As so often happens, the clock is moving against me. I have much material here to answer every question posed by noble Lords. I apologise that I will not have time to do that in my allocated slot and I will write to all noble Lords with answers. Suffice it to say that, while tonight’s debate has highlighted variations in the quality of care, the fact is that there are some very good examples of Parkinson’s services. In Barnsley, for example, there is an holistic, multidisciplinary service in a range of locations tailored to meet the needs of patients. We need to replicate such models, ensuring that everybody has access to comprehensive services and expert multidisciplinary care. Through our health reforms, we are determined to continue to transform standards and to achieve better outcomes for people with Parkinson’s disease.