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Speech by Stephen Ladyman MP, Parliamentary Under Secretary of State for Community, 11 May 2004: Long Term Medical Conditions Alliance

  • Last modified date:
    8 February 2007

Thank you for inviting me to your AGM and Members' Forum. It is just over six months since I spoke at the LMCA conference on developing the Long Term Conditions NSF so I am very pleased to be here .today with people I regard as partners in change.

  • Partnership is the key to getting things done. Partnership with service users and carers; voluntary organisations; health and social care professionals; service managers; local agencies and organisations; and the private and independent sectors.
  • The LMCA is at the forefront of partnership working. Your member organisations show us how to forge partnerships between the voluntary sector and service users and their families and the LMCA itself is a partnership of many different organisations.
  • And I'm especially pleased that the LMCA is also working with the Department of Health and contributing to policy development, service modernisation, and improved care and support. I'm especially grateful to Melinda Letts, not only for her work in chairing the LMCA for the last seven years but also for her contribution to the work of the Modernisation Board and the reform of patient and public involvement. I look forward to working with her successor.
  • Today, I want to focus on five recent and ongoing strategies that are also promoting partnership working.
    - Building on the Best, which is improving choice for patients in health care;
    - The recently announced work to improve the management of chronic disease;
    - The roll out of the Expert Patients Programme across the country;
    - Our strategy to put in place a more formal relationship between the statutory and the voluntary and community sectors; and,
    - The NSF for Long Term Conditions.
  • Last Autumn, we launched the "choice, responsiveness and equity consultation". I know from colleagues that the LMCA's contribution to that work was highly valued, particularly your involvement in the task groups.
  • The consultation led in December to the publication of "Building on the Best". This draws out key themes and focuses on changes that the public, NHS and voluntary organisations said would most help to improve the experience of healthcare for patients, users and carers.
  • The consultation delivered three powerful and consistent messages that cover the spectrum of healthcare. They are at the core of our work on choice:
    - Firstly, everyone - not just the affluent middle classes - should have the opportunity to share decisions about their healthcare and to make choices where appropriate;
    - Secondly, we need the right information, at the right time to enable us to make decisions and exercise choice; and,
    - Thirdly, our health needs are personal to us. Services should be shaped around our needs and not the other way around.
  • Building on the Best set out six priorities for immediate action, which will apply to everyone with a long term condition. The priorities cover:
    - how we are treated - so health professionals know about our personal preferences in advance;
    - access to a wider range of services in primary care;
    - increasing choice of where, when and how we get medicines;
    - booking appointments at a time that suits patients, with a choice of hospitals;
    - widening choice of treatment and care, starting with greater choice of care at the end of life; and,
    - ensuring that people have the right information, at the right time.
  • These changes will not happen overnight. Progress and improvement will take time, but Building on the Best is also about cultural change. It is about showing how real, sustainable changes can be delivered and people with long term conditions will benefit greatly.
  • In March, John Reid announced a new work programme aimed at helping people manage their own chronic conditions and, ensuring people with more complex needs have access to the support and help they need to stay healthier for longer.
  • This was followed up with the publication in March of Improving Chronic Disease which sets out three key areas where focused activity can lead to improved care for people with chronic conditions:
    - Self-care support, which can help people take control of, and live with their conditions.
    - Good disease management, in which multi-disciplinary teams provide high quality, evidence based care, often through specialist nurses.
    - And case management, so skilled practitioners working in an integrated care system support people with very complex needs
  • Over the coming months the Department of Health is currently developing a work programme focusing on case management and self-care support. We will make the most of the valuable contribution that patients, carers and their representatives can make to this work.
  • But some of this work is already happening. For example, we are already seeing the principle of self care being implemented across the country through the Expert Patients Programme. This is helping people with chronic conditions tackle the effects of their illness like pain, depression and tiredness, by learning new skills to help them manage their condition better on a day-to-day basis. It is also helping to build equal, informed partnerships between patients and health and social care professionals.
  • Primary Care Trusts are currently piloting the Expert Patients Programme in England. I don't need to remind you at the LMCA that the foundations for this work is the expertise on self care developed by Stanford University in the USA; and, by voluntary and patients' organisations in the UK, like Arthritis Care and the LMCA. In recognition of the LMCA's expertise in this area we have provided Section 64 project funding of £174,000 over the next three years for the 'Promoting the Expert Patients Programme' project. 
  • I'm keen that the NHS works with the voluntary sector to deliver the expert patient courses during the pilot phase, and over the next three years, to ensure the programme becomes a reality in mainstream NHS services. We have taken practical steps to ensure this through the secondment of an LMCA member to the programme.
  • The examples I have set out show the value we place on the role of the voluntary sector in developing and implementing key policies and strategies. In practical terms, we use the Section 64 scheme to fund the voluntary sector in supporting the aims of health and social care services. Last year alone, we distributed around £22 million to over 400 organisations through this scheme.
  • While Section 64 funding helps to support co-ordinated and well planned partnership working, in some areas this work is still very much ad-hoc and informal. We recognise that there are many benefits in having formal links between the statutory and voluntary sectors, not least in ensuring consistency and quality of input in the policy process.
  • To explore the possibility of more formal links, we published 'Making Partnership Work for Patients, Carers and Service Users' last year. This formed the basis for consultation on a proposed strategic partnership agreement between the Department of Health, the NHS, and the voluntary and community sector.
  • The partnership agreement will include a voluntary and community sector concordat and a National Strategic Partnership Forum in health and social care. The Forum will have representatives from the voluntary and community sector, social services and the NHS. It will be responsible for taking forward the concordat that we plan to launch in July, and for ensuring the long-term success of effective partnership working between the statutory and voluntary sectors.
  • If we are going to address the traditional cultural and behavioural barriers to partnership working, we have to work on different levels - locally and nationally. Local community groups have an important role to play alongside national and larger voluntary and community organisations. They have the potential to influence and add value to:
    - the development of services on the ground;
    - the development of national policy; and,
    - the strategic agenda for making services more patient and user focusedIncreasingly, local groups will take a prominent role in ensuring the success of key strategies such as Building on the Best, which sets out the need for more flexible and responsive models of service provision, to improve patient choice.
  • Finally, I want to talk about the NSF for Long Term Conditions. This will focus on improving the standard of services for people with neurological conditions. However, I know there are lots of people here who would like to see the NSF cover their particular non-neurological conditions and some who are disappointed this isn't happening. But it is important to be realistic and pragmatic. The NSF cannot cover all long term conditions or the whole disability agenda. It will focus on neurology services, because this is an area of real need. In many places there are still patchy services, long waiting lists and inequalities.
  • However, I am sure there will be ideas, for example, around models of care and how users and carers are supported with information that will be taken up by other medical specialities. There will also be benefits for everyone around issues like access to community equipment. So, if your's is not a neurological condition there will be plenty in the NSF for you.
  • The development of the NSF is another very good example of how the partnership approach can work successfully. Very early in the NSF's development we were clear we wanted an inclusive and open approach to this work. Throughout the process we have been careful to listen to the views of a wide range of stakeholders, including service users and carers.
  • The External Reference Group and the working groups that are advising the Department are multi-disciplinary groups, with a diverse range of interests, expertise and experience. The LMCA and Neurological Alliance are fully involved in the NSF process - David Pink and Maureen Kelly are on the ERG. The LMCA and Neurological Alliance have also contributed very useful information and feedback from users and carers through the NSF focus groups and written questionnaires. This has influenced the thinking of the External Reference Group and the recent publication of their 'Shaping the NSF' report show that the views of users and carers are consistent with ideas emerging from the ERG.
  • At all stages we have given practical and financial support for this activity:
    - We provided a Section 64 core grant funding totalling £235,000 to the LMCA over the last three years; and £187,000 for the Neurological Alliance over the period 2001 to 2006 and a Section 64 project grant of £137,000 to the Neurological Alliance for its Patient and Carer Voices in the NSF project. The Alliance held several focus groups across the country, to secure the views of users and carers, including 'hard to reach' and minority ethnic groups.
    - We made available a Department of Health secondee to the LMCA and Neurological Alliance to co-ordinate consultation on NSF.
    - We also hosted a secondee from the Multiple Sclerosis Society to the Department of Health's NSF project team for a year to provide practical voluntary sector input into the NSF's development.
    - And we undertook large scale consultation events at the start of process in November 2001 to gather views on what people wanted the External Reference Group to address and more recently in March 2004 to get feedback on work in progress.
  • I expect to receive the External Reference Group's advice at the end of the month. From my regular contact with the Chairs, I know there are several key themes for improving neurology services that have emerged. These include providing:
    - Person-centred care, for example, providing people with good quality information, support and skills to manage their condition  and providing more joined up assessments and care plans
    - Life-long access to specialist healthcare, such as helping people move smoothly from acute treatment or diagnosis to early or longer term treatment
    - Rehabilitation, adjustment and social integration, like helping people come to terms and cope with their illness and disability so they can live as independently as possible and making sure they get the practical support when they need it, including housing adaptations and community equipment
    - Long term care and support, for example, providing help and support for people with moderate and high care needs, and support for families and carers
    - And finally, care across different settings and services, such as making sure people get their neurological needs met when they are having treatment and care for other things, for example, if they go into hospital to have their appendix out and making sure that people can move smoothly between different services, perhaps between children's, adult's and older people's services or if they move to another geographical area
  • The External Reference Group has also looked at some of the underpinning and strategic issues such as workforce development, research and evidence, and finance and costing. It has also looked at the needs of black and minority ethnic groups and people with rapidly progressing neurological conditions. It has also highlighted issues that are the responsibility of other government departments, like housing, transport and welfare benefits.
  • As I said, the External Reference Group will submit its advice to me at the end of the month. I want to thank them for their enormous efforts in producing what I am sure will be very good quality advice produced in a little over 18 months. They have done this on top of very demanding 'day jobs' and with tremendous commitment, energy, and enthusiasm. We are all very grateful.
  • I am committed to publishing the NSF as soon as we can. However, I don't want you to underestimate the amount of work needed to turn the External Reference Group's advice into the final NSF. I will need to
    - evaluate and cost the recommendations
    - assess the implementation issues
    - assess workforce and resource implications
    - get the right 'fit' with other Department of Health policies like palliative care and chronic disease management
    - and discuss the implications with colleagues in other government departments such as the Department for Work and Pensions and the Office of the Deputy Prime Minister
  • This NSF is a complex one and I will need to make sure that it:
    - balances the needs of a large community of stakeholders
    - and addresses the broad scope of needs across the client groupIts implementation also has to be practical in the context of the devolved health and social care structure, which means:
    - no national targets
    - and more devolved budgets and more local flexibility and choice about how to make service improvements
  • All this will take time, but I am clear I want to do 'full justice' to the External Reference Group's advice and not rush this phase of the work but I promise we will publish as soon as we can.
  • So, I hope I've shown you we have a good story to tell on partnership with voluntary organisations, both in terms of strategies like Building on the Best, chronic disease management and the Expert Patients Programme, and also in projects like the Long Term Conditions NSF. 
  • We can always do better and we will. We can always do more for people with long term conditions and we will. But there is nothing wrong with our commitment and we will turn the promise I've described today into real improvements for real patients.

Thank you for taking the time to listen to me today.

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