3. Evidence submitted by the Arthritis
and Musculoskeletal Alliance (ARMA) (PPI 149)
INTRODUCTION
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?
- To empo
- 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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