24. Evidence submitted by Diabetes UK
(PPI 100)
Diabetes UK is one of Europe's largest patient
organisations. Our mission is to improve the lives of people with
diabetes and to work towards a future without diabetes through
care, research and campaigning. With a membership of over 170,000,
including over 6,000 health care professionals, Diabetes UK is
an active and representative voice of people living with diabetes
in the UK.
1. What is the purpose of patient and public
involvement?
1.1 Patient and Public Involvement is integral
to achieving responsive, relevant healthcare services for all
patients. Involving users in local planning and decision-making
is the only way to create a health service built around the needs
of those who use the service, rather than the needs of the system.
User involvement supports services and practitioners by providing
them with access to information about the real experiences of
the people who use the services. Involvement of users in the design,
planning, delivery and monitoring of local diabetes care services
is central to achieving the NHS Plan vision, to "reshape
the NHS from a patient's point of view"1 It is essential
for people with long-term conditions to feel empowered as effective
control relies on self-management for good clinical outcomes.
People can only self-manage in the context of services that work
for them. Therefore, the needs of people living with diabetes
should be central to every element of local decision making to
meet political aspirations, improve legitimacy and ultimately
to ensure a better service.
2. What form of patient and public involvement
is desirable, practical and offers good value for money?
2.1 Involvement of people with diabetes
and their carers should be at every level of decision making:—Strategic,
operational and practical. It is about listening, openness and
dialogue between those managing, providing and using the service.
Involvement is essentially about relationships. Activity that
enables dialogue between all stakeholders has to be included in
agendas,2 through informing, consultation and partnerships.3 Representation
and supported involvement of people living with diabetes, for
example through Diabetes Networks, PCTs and similar structures,
provide mechanisms for considered, comprehensive and informed
views about how needs can be appropriately met.4 The User Representative
role has been developed to ensure the voice of people with diabetes
is present to ensure diverse and broader knowledge, experience,
and perspectives are represented. User Representatives are there
to support the process of engagement but are not ultimately responsible
for it. Wider consultation should also be undertaken.5
Involvement is needed to influence local service
delivery to improve:
— partnership working through building
and sustaining relationships
— accountability and legitimacy for
decisions made
— relationships between the users and
staff with clear expectations6
— feedback and evaluation about service
provision to help improve and shape future provision
— empowerment of communities and reduction
of inequalities7
— experiences of those who use services
leading towards improved health outcomes.
2.2 The process of involving people with
diabetes in planning diabetes services should be resourced, monitored
and evaluated. This is to ensure mechanisms for involvement are
working effectively and that changes to diabetes care have been
made that reflect the input of service users.8
2.3 People with diabetes are central to
all aspects of the work of Diabetes UK, making us a leader in
the field. We have a strong representation in our governance structure
of lay representatives, with 60% making up our Advisory Council.
The Advisory Council is involved in shaping the organisation's
strategy and elects the Board of Trustees. Other forms of user
involvement include a secure online discussion site where a wider
number of users can be consulted, form focus groups, and take
part in surveys, all of which inform a variety of the organisation's
work streams. We have a reader's panel to provide feedback on
the content of our membership magazine, Balance and people
with diabetes also sit on our research committee and express their
opinions on the value of research to people with diabetes. In
the case of borderline decisions, it's the lay members of the
Committee who have the final say because it's the money of members
of the charity that funds research. Members of our voluntary groups
also undertake various activities including providing peer support
to others with diabetes and their supporters, and disseminating
Diabetes UK information.
2.4 Diabetes UK receives funding from the
Department of Health to implement a service user involvement project,
which has been running for four years. This project aimed to support
the implementation of the National Service Framework for Diabetes,
with regard to users becoming directly involved in the planning,
development and delivery of local health services via Diabetes
Implementation Groups and Managed Diabetes Networks. Diabetes
UK has trained 167 user representatives at 19 training days held
during the course of the project.9
2.5 Diabetes UK has also developed guidance
for PCTs regarding how they can effectively recruit and support
User Representatives, which can be accessed at http://www.diabetes.org.uk/professionals/Shared_Practice/Care_Topics/User_Involvement/User_Involvement_-_Care_Recommendation/
2.6 The National Diabetes Support Team (NDST)
has recently announced that it is funding a new project to be
carried out by Diabetes UK in partnership with London Metropolitan
University. The aim of the work is to ensure that people with
diabetes are involved in everything that impacts on their health
care. They will be able to contribute to policy development at
the Department of Health and also at a local level to diabetes
networks and service delivery. It will focus on engaging "hard
to reach groups" eg ethnic minority communities, as well
as children and young people and their carers/parents. The new
work will, among other things, link with existing user involvement
organisations, collate examples of good practice and work towards
providing training for healthcare professionals.
3. Why are existing systems for patient and
public involvement being reformed after only three years?
3.1 Diabetes UK responded to the consultation
"A Stronger Local Voice" published by the Department
of Health which aims to create a stronger local voice in the development
of health and social care services. In our response we recognised
that significant improvements need to be made to enable the general
patient and publics to be involved in local service delivery.
We expressed our disappointment that existing routes for involvement
are to be abolished and new ways proposed, rather than attention
being put into strengthening and adapting those already in existence.
We have had feedback from users and staff that they find the NHS
and its involvement mechanisms confusing. More changes will make
it even more difficult to encourage and support users to have
their say.
3.2 These new proposals will be unsettling
for a large number of users currently involved and could result
in a feeling of disenfranchisement of those who are already closely
involved in Patient Forums. Appropriate and supportive communication,
valuing the input already put into developing Patient Forums is
absolutely necessary for local engagement and involvement to increase.
3.3 The key areas to be addressed through
the new structures are:
— The skills, passion and knowledge
of users already working with PCTs and SHAs must be retained for
the newly proposed systems to work.
— Careful and widespread communication
about systems, funding and support opportunities needs to occur
across existing community and local voluntary groups, particularly
focusing on what their role is, how it works and how people can
feed into them.
— A key role of LINks should be to
network and engage with existing community and voluntary groups
to facilitate the exchange of views and comment.
— Flexible opportunities for being
involved need to be developed. Many people are keen to be involved
in local service developments, but prefer not to attend meetings.
— Emphasis must be placed on training
practitioners and managers working directly with involved users
and for staff and elected members who will be the recipients of
user views.
— Planning, commissioning, monitoring
and evaluation of diabetes services must involve volunteers, user
representatives, carers, healthcare professionals and campaigners
directly affected by diabetes. Models of good practice already
exist where managed diabetes networks, involving specialist, primary
and community staff working alongside people with diabetes are
planning and developing local diabetes services.
— Efforts must be focused on proactively
seeking and benchmarking patient access and experiences. Information
to inform service delivery and choices must be more widely accessible
and support to understand it made available.
4. How should LINks be designed?
4.1 Remit and level of independence
4.1.1 LINks should contribute to the agenda
allowing people with diabetes and other users to input into services.
The work should support the implementation of the National Service
Framework for Diabetes by facilitating users direct involvement
in the planning, development and delivery of local health services
via Diabetes Implementation Groups and Managed Diabetes Networks.
4.2 Membership and appointments
4.2.1 Sound governance arrangements need
to be established to ensure that LINks are managed appropriately
and to ensure that all members of the local community wishing
to be engaged in health service planning, commissioning and monitoring/regulation
are able to do so. Recruitment of members needs to be supported
by a transparent system detailing how implementation will happen,
sustained and evaluated. Particular efforts should be made to
ensure all sections of the community are represented. Transparency
will be supported by having elected boards to ensure consistency
with other policies for accountability and representation with
Foundation Trusts.
4.2.2 Clear role descriptions should be
developed and be the basis upon which individuals are informed
of what they have to do and the means by which they are recruited.
In order to ensure accountability of management and governance
structures, local area elections should be considered, where individuals
wishing to be involved in the management and governance structures
are chosen by the entire local community on the basis of their
case made for standing. Paid staff will be required to undertake
the administrative and management functions to ensure that the
LINks are successful.
4.2.3 As well as commissioners being required
to respond to the community and provide feedback on the results
of consultations, PCTs and providers should also be required to
put in place user involvement strategies defining what and how
they are going to involve patients and the public. How strategies
are communicated to the local community should depend on local
circumstances. For example, circulated to all houses in the local
community, seeking comment, feedback and expressions of interest
about how they could be involved, and through local voluntary
and community groups. Involvement in LINks should not be solely
based on membership as not all people wanting to get involved
will want to "join".
4.2.4 Past experience has shown that services
can find it difficult to involve black and minority ethnic communities,
so it is important that there is a willingness to go out to meet
individuals. For example: in community centres, places of worship,
festivals and shopping areas; healthcare workers, especially link
workers and those from the same ethnic background, should always
be drawn on for their expertise and contacts; advertise the position/s
in places people visit on a regular basis, such as shops, temples
and mosques. Diabetes UK has developed a toolkit designed to help
engage ethnic minority communities http://www.diabetes.org.uk/campaigns/index.html.
4.2.5 The following principles should be
applied in the development of new systems:
— Initial information should be provided
about what is involved, what they are being asked to do, availability
of administrative support and reimbursement of expenses. Diabetes
UK recommends that all out of pocket expenses should be covered
ie travel, childcare costs and carer costs. Strong consideration
should also be given to funding users and members time to achieve
significant engagement.
— Various methods can be used to attract
people living with diabetes, which include for example:
— ask healthcare staff to promote the opportunities
for involvement;
— ask existing user representatives to
inform friends, families and colleagues;
— posters in GP surgeries, hospitals or
pharmacies;
— mailings to all those living in a neighbourhood,
perhaps through the electoral register;
— contacting local voluntary groups or
organisations eg one of Diabetes UK voluntary groups or networks;
— advertising in community centres, Patient
Advice and Liaison Services (PALs), and local press;
— contacting national organisations, such
as Diabetes UK, Voluntary Action Councils or disability groups
who may be able to promote activities in communication channels;
and
— holding public meetings to share information,
answer questions or consult on current services and future planning.
These meetings offer the opportunity to find people who may be
interested in getting more involved.
4.3 Funding and support
4.3.1 There needs to be recognition from
the Department of Health that investment is needed to enable user
involvement. This needs to be done from two perspectives; there
needs to be support and training for the users and also support
and training opportunities built in to enable healthcare professionals
to listen to the users. LINks need to be provided with knowledge
and skills to involve users and how to value users view.
4.4 Areas of focus
4.4.1 Obviously we would like a focus on
diabetes services specifically. However, our User Representatives
have fed back to Diabetes UK the importance of taking a holistic
approach to service design. Diabetes, as a long-term condition,
has many similarities with other conditions such as heart disease,
stroke, asthma, cancer. These similarities include exercise, diet,
lifestyle, counselling, support on diagnosis, patient self help
and education. Whilst there are differences in the actual content
that require a specialist approach, there could be a generic process
and approach. For example, a NHS team funded a gymnasium specifically
for their diabetic patients but that was only available part time.
If this had been set up as a general resource for others to use,
then GPs could refer more patients with other needs to the unit,
thus allowing the resource to be used more efficiently and available
to help more people.
4.5 Relations with local health Trusts
4.5.1 We welcome the requirement that NHS
trust providers and PCT commissioners need to increase meaningful
engagement. However, the guidance does not currently specify how
this can be done. Emphasis must be placed on identifying and engaging
with the systems and groups already in existence. Specific requirements
need to be put in place detailing how and who PCT commissioners
consult with to commission and develop new and existing healthcare
services. Planning, commissioning, monitoring and feedback of
diabetes services must involve volunteers, user representatives,
carers, healthcare professionals and campaigners directly affected
by diabetes and using the services. Systems will need to be put
in place to ensure involvement and support of users focused on
specific conditions such as diabetes, as well as around functional
and generic healthcare delivery issues, to ensure accountability.
Models of good practice already exist where managed diabetes networks,
involving specialist, primary and community staff working in partnership
with people with diabetes (user representatives and champions),
are planning and developing local diabetes services. Diabetes
UK provides detailed guidance and practice examples to users and
those working in the NHS www.diabetes.org.uk/sharedpractice. It
is these established networks that should be leading and advising
on the commissioning and monitoring of appropriate services, with
strong involvement from people with diabetes.
5. How should LINks relate to and avoid overlap
with:
5.1 Local Authority structures including
Overview and Scrutiny Committees
5.1.1 The plans for LINks to establish specific
relationships with OSCs will we think provide greater accountability,
however concerns exist about how closely all OSCs currently work
with PCTs and healthcare professionals to ensure adequate patient
and public involvement in healthcare. The creation of stronger
links between health and social care is essential for improving
the integration of health and social care. OSCs need to strengthen
their links with PCTs and proactively monitor services for specific
groups. The National Service Framework for diabetes sets clear
standards of care for people living with diabetes and OSCs need
to ensure that these standards are being delivered in all areas.
5.2 Inspectorates including the Healthcare
Commission
5.2.1 The DH's consultation document states
that users will be more involved in regulation and inspection
bodies and processes. However, it does not state how this will
happen. We welcome the commitment to measure the performance of
user involvement processes and look forward to commenting on the
criteria developed to assess against national standards. In order
to strengthen the voices of those living within local communities
efforts must be focused on proactively seeking and benchmarking
patient access and experiences. The Healthcare Commission User
survey of access and views of people with diabetes will provide
a good indicator to compare across local health areas. Diabetes
UK has worked with Dr Foster to monitor the quality of diabetes
care provided by PCTs10 in England comparing this to the experiences
of and access reported by people with diabetes. 11 The "Your
local Care" benchmarking tool can be found at www.drfoster.co.uk/websites/objectlist.aspx?w=17.
This tool, alongside Diabetes UK's annual diabetes state of the
nations report12 provides a means of benchmarking the quality
of care nationally to inform commissioning processes and regulation
to monitor if people with diabetes are receiving the care they
should expect. 13
5.3 Formal and informal complaints procedures
5.3.1 Information about how to complain
must be easily accessible. Users must be given information about
what services to expect. Mechanisms should be in place about services
to capture views of those who may not use traditional complaints
systems. Systems should be in place to feed complaints about policy
guidance back in at the local level so that these can be addressed
locally as well as nationally.
6. Conclusion
6.1 Diabetes UK welcomes further advances
towards putting in place structures to give patients and the public
a greater say in the way that their health care is delivered.
These structures must build on the successes of many Patient Forums
but must also reach out to communities that have proven harder
to reach in the past. Resources must be provided to ensure that
representatives, managers and healthcare professionals are trained
to communicate, listen and understand how to engage effectively
using these new structures and there needs to be effective and
ongoing monitoring and feedback systems in place.
Claire Francis
Public Affairs Manager, Diabetes UK
10 January 2007
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