Select Committee on Health Written Evidence

3. Evidence submitted by the Arthritis and Musculoskeletal Alliance (ARMA) (PPI 149)


  The Arthritis and Musculoskeletal Alliance (ARMA) is an umbrella body bringing together 33 national organisations working in the field of arthritis and other musculoskeletal conditions. This includes service user groups, professional associations and research bodies. It is a registered charity.

  ARMA welcomes the opportunity to respond to the Health Select Committee's enquiry. Although drawing its membership from a number of fields, ARMA unites them around a common purpose of improving quality of life for people with musculoskeletal conditions. Our comments will be made in this context.

1.   What is the purpose of patient and public involvement?

  1. To empo
  2. wer citizens, as stakeholders within the local health economy, to influence the future direction and development of health and social care services that they use or may use in the future.

  1.2  To improve the legitimacy and quality of decision-making and policy-making within the local health economy by drawing on the experiences and perspectives of the people who use the services.

  1.3  To enable local health service providers to be held to account by their stakeholders as the funders and users of the services.

2.   What form of patient and public involvement is desirable, practical and offers good value for money?

  2.1  Any organised system of patient and public involvement must:

    —  Be independently constituted outside of any organisation responsible for the delivery of health and social care.

    —  Enable people from all backgrounds to participate, paying particular attention to the involvement of disadvantaged and underrepresented groups.

    —  Ensure that a broad range of people who have experience of living with various conditions are involved.

    —  Support participants in LINks through induction, training and ongoing advice and information so that they can be effective in their roles.

    —  Foster effective relationships and partnerships with existing relevant voluntary sector infrastructure in the local health economy.

    —  Have sufficient funding and resources to conduct an effective work programme and to pay the expenses of those who are involved.

    —  Place a legal duty to consult with it on all providers of health and social care that is either delivered by the local health service, or on their behalf by contract through the independent sector.

  2.2  In this submission ARMA would like to pay particular attention to its view that the system should foster effective relationships and partnerships with existing relevant voluntary sector infrastructure in the local health economy.

  2.3  ARMA has adopted a successful model of working through its ARMA Local Networks that are currently being piloted in 20 locations in England through a grant from the Department of Health Section 64 Grant Scheme.

  2.4  The Local Networks translate ARMA's successful national model of collaborative working between service users and professionals in order to influence service improvement at a local level. They enable local service users who are involved with organisations such as Arthritis Care, Back Care, Lupus UK, National Rheumatoid Arthritis Society, The Reynauds and Scleroderma Society, National Ankylosing Spondylitis Society and the Scleroderma Society. People from local support groups that are not part of any national body also get involved.

  2.5  Arthritis Care (one of ARMA's member organisations) is also piloting a project that supports service users participation the Local Networks. The project provides support to all service users involved in the networks through phone calls and personal support from regional campaigns managers, as well as tailored residential training events. The training covers meeting dynamics and confidence building, representation issues, local health structures and demystifying medical and NHS language in order to enable service users to participate fully in all aspects of the networks' work.

  2.6  Our evaluation of the first year of the three year pilot has demonstrated that the Local Networks can have a significant impact on service improvement through increasing service user involvement.

  2.7  Examples include:

    —  Developing a service user support centre in Leeds as a collaborative project between the hospital trust and the local voluntary sector.

    —  Better co-ordination between orthopedics and rheumatology departments in Norwich, leading to improved access to pre-operative therapy.

    —  In Lancashire and Cumbria a Local Network has successfully lobbied the PCTs to conduct a public consultation when they learnt an independent provider had been awarded preferred bidder status for 60-80% of outpatient work across six specialties without any consultation with services users, health professionals or the public in general.

  2.8  ARMA believes that LINks will have better outcomes if they work effectively with bodies such as the ARMA Local Networks. Indeed ARMA would welcome the opportunity for bodies like its Networks to have a formal partnership status with LINks. Such partners would need to fulfil certain criteria around governance, membership and how service users are involved within them to avoid inappropriate relationships that might compromise the independence and integrity of the LINks.

  2.9  ARMA would happily provide service users who are involved in our ARMA Local Networks to give evidence of their experiences and to discuss how organisations might partner the LINks.

3.   How LINks service should be designed

Remit and level of independence

  3.1  LINks should be independently constituted outside of any organisation responsible for the delivery of health and social care. Consortia of voluntary sector bodies already existing within health economies should be strongly considered as a model for hosting and supporting LINks.

Membership and appointments

  3.2  ARMA believes that there is significant merit in appointing people who are able to give a wider perspective than their own individual experiences of using services. These could be drawn from a range of people who are active within local charities working within health. Not only can they reflect on their own experiences as service users, but they are also able to consult with a wider network within their own organisations, who often play an important role in improving their members' capacity to engage effectively in such structures.

  3.3  For example, members of the National Rheumatoid Arthritis Society who are involved in ARMA Local Networks are supported in their roles by the NRAS volunteer coordinator. This coordinator shares information about the experiences of others with rheumatoid arthritis with the ARMA Local Network member, who can therefore make a wider, more informed contribution to the network's work. In turn, the members share network developments with the volunteer coordinator, who can report this information back to others living with rheumatoid arthritis.

Funding and support

  3.4  Funding should come from the Department of Health and be guaranteed for a sufficient length of time to enable LINks to be plan strategically and be sustainable over a longer term. Voluntary organisations who are hosting LINks should be encouraged to use a full cost recovery model.

Areas of focus

  3.5  The focus of each LINks should be driven by the health and social care needs of the local population. They should focus on strategic issues and complement other means by which service-users can give feedback on current or recent operational matters.

Statutory powers

  3.6  It would be beneficial for the statutory power to monitor and report on health services to remain with LINks as they replace PPI Forums, with additional powers in relation to social care being put in place.

Relations with local health Trusts

  3.7  ARMA's Local Networks have demonstrated that a productive relationship can be established between service users and the professionals who are responsible for the delivery of their care. This has been enhanced where managers responsible for planning and commissioning have got involved.

  3.8  For example, an ICATS (integrated clinical assessment and treatment services) commissioning group in East Kent recognised the importance of involving the views of both service users and healthcare professionals in their work through and arms-length body. This group therefore approached ARMA in order to foster the development of a Local Network that could contribute to the development of ICATS in a meaningful way, as well as improve musculoskeletal services more generally.

National coordination

  3.9  ARMA recognises the value of having a national organisation that provides a central strategic resource body that would:

    —  Gather and share good practice about innovations in patient and public involvement.

    —  Foster the development of LINks through providing advice, support and training.

    —  Raise the profile and priority given to patient and public involvement in national policy-making.

4.   In what circumstances should wider public consultation (including under Section 11 of the Health and Social Care Act 2001) be carried out and what form should this take?

  4.1  ARMA believes there would be some circumstances that will affect service users that would necessitate a wider public consultation. It is ARMA's view that service users, through LINks, should be involved in the design and development of the consultation process to ensure that it is accessible and focussed on the best interests of users.

Bill Freeman

Director, The Arthritis and Musculoskeletal Alliance

January 2007

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