Memorandum from Diabetes UK
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 175,000,
including over 6,000 health care professionals, Diabetes UK is
an active and representative voice of people living with diabetes
in the UK.
FACTS ABOUT
DIABETES
— Prevalence of diabetes is 2.3 million
in the UK. It is predicted that diabetes prevalence will double
world-wide, accounting for 3.07 million people in the UK. [69]
— Diabetes affects the young and old,
and has particularly poor outcomes in those of lower socio-economic
status and in those from black and minority ethnic groups. [70]
— Evidence is available supporting
the need for improved education of people with diabetes and their
carers if better control and improved outcomes are to be achieved.
[71]
— Diabetes, if undetected or not well
managed, can lead to many complications and have a devastating
impact on quality of life.
SUMMARY RESPONSE
This consultation considers the involvement
of service users in the design and delivery of public services.
Complaints systems, feedback mechanisms, consultation processes
and services user involvement in designing and delivering services
are considered within the consultation.
Diabetes UK believes user involvement is a crucial
part of ensuring that diabetes services are designed to be patient
centred and tailored to the needs of the local diabetes population.
Systems must be in place to ensure a diverse range of people are
involved and included in consultations and that complaints mechanisms
are flexible in order to capture the views of those who may not
engage with traditional complaints systems.
KEY ISSUES
NEEDING TO
BE ADDRESSED
— User involvement is key to service
design and delivery particularly if services are to be centred
on the needs of service users. Service users have a role to play
both in designing and delivering services and much can be learnt
from existing organisations already involving people in this way.
Appropriate support and training must be provided to service users
in these roles.
— Several mechanisms must be employed
to seek out the views of users and to involve them, to ensure
that a diverse range of service users are included and heard.
— User representatives must be seen
as part of a process of involvement and not be seen as a substitute
for wider consultation and involvement.
— Customer satisfaction should consider
matters relating to quality of life as well as service provision.
— Not only must information about complaining
be easily accessible, but also information about what services
to expect. Various mechanisms to seek feedback about services
should be employed to capture the views of those who may not use
traditional complaints systems. Systems should also be in place
to feed complaints about policy guidance in at the local level
so that these can be addressed locally as well as nationally.
— It should be possible to set minimum
standards and these should be focussed on opportunities for involvement
and the processes for doing so.
— Consultation spans the spectrum of
decision making about an individual's own needs through to population
needs and national policy guidance.
— Local mechanisms for the design and
delivery of specific services are vital. These panels will bring
together the expertise of many stakeholders including the relevant
service users.
DETAILED RESPONSE
1. Can public services learn from the way
that either non public sector organisations or overseas governments
make use of user experience in service delivery and design?
Yes. Several of these organisations will have
well established systems and infrastructure in place to ensure
users are involved in various ways. At Diabetes UK our UK Advisory
Council (60% of which is made up of lay people with diabetes and
members of our voluntary groups) is consulted in the development
of the organisation's work, such as the development of policy
statements and responses to consultations. Beyond this other forms
of user involvement include a secure online forum where a wider
number of users can be consulted regarding the above, as well
as focus groups, forums and surveys all of which inform a variety
of the organisation's work streams. 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. Diabetes UK also provides support to
User Representatives. These representatives sit on Local Implementation
Teams and Managed Diabetes Networks and directly represent the
needs of people with diabetes in the locality and inform and influence
service design and how it will be delivered.
2. Is it possible to set minimum standards
for public services? If so how is this best done?
Yes this should be possible and conducted in
the context of wider consultation. Clarity is needed about the
purpose of the minimum standards. These need to be focused on
opportunities for involvement, the processes for doing so and
support to enable this to happen.
3. What role do measures of customer satisfaction
have in assessing the standards of public services? How should
user views be monitored? How can the cost effectiveness of user
surveys and feedback mechanisms be assessed?
Customer satisfaction is not just about satisfaction
with the service but about satisfaction in terms of impact on
quality of life. Healthcare and access to services, treatments,
support and information all impact on a person's quality of life
as well as clinical outcomes. Complaints and their outcomes should
be linked into customer satisfaction measures. In addition the
bench marking of peoples' access to services and experiences of
these services should be incorporated into systems that inform
customer satisfaction. Within the field of diabetes and at Diabetes
UK not only are surveys conducted, but we have a facility to capture
"real time" information about issues arising within
localities enabling us to keep up with what current local level
issues are.
Filling in surveys is not always the most appropriate
means of assessing views, particularly for groups who are hard
to reach or whom do not speak English as their first language.
Further mechanisms such as focus groups, citizen's juries and
local schemes play an important role in identifying and assessing
views and then using the information to inform service developments.
5. Is information about complaining easy
to find and accessible?
This very much depends on the mechanisms and
circumstances relating to the complaints. Social factors such
as age, gender and ethnicity may impact on the preferred method
of complaining and how accessible these methods are. It is also
important to consider how awareness is raised about what standards
people should expect to receive as this will impact on whether
the person considers they are right to complain. In addition proactive
methods of consultation about service provision may elicit complaints
that might otherwise not be received. Even when information about
how to complain is accessible, the mechanisms related to resolving
the complaint can be more complicated.
6. Should users be more directly involved
in service delivery? If so how can this be achieved?
Yes. Underpinning involvement must be a commitment
to providing appropriate mechanisms to ensure users receive the
training, information, support and networking opportunities that
they need to deliver services. Diabetes UK has developed guidance
for PCTs regarding how they can effectively recruit and support
User Representatives in relation to diabetes services7;
http://www.diabetes.org.uk/Professionals/Shared_Practice/Care_Topics/User_involvement/User_Involvement_-_Care_Recommendation/
Other criteria with regards to user involvement
can include the following:
— A user involvement strategy needs
to be developed with clear objectives. This needs to be supported
by a transparent system of how implementation will happen, how
it will be sustained and evaluated.
— All diabetes planning groups at Network
and PCT level need to have users involved and such representatives
have a role to work with wider community contacts to inform developments
and decisions made at all levels within the PCT. Managed diabetes
networks, involving users, play an important role in delivering
diabetes services and should be fully utilised throughout the
commissioning process.
— User Champions and User Representatives
need to be recruited using a transparent recruitment process and
need to be supported in their role.
— Mechanisms for wider involvement
are also needed, so that the views of the diabetes community are
used to inform developments and decisions. A User Champion or
Representative should not be seen as a substitute for this.
— Feedback is required on an ongoing
basis to report on outcomes and identify how involvement has helped
shape activities and change.
There are several matters for consideration
which include:
— If the person will be a paid employee,
or how expenses will be paid if they give their time in a voluntary
capacity. Diabetes UK for example 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.
— The development of governance procedures,
including a job description for roles, to ensure what is expected
of users is transparent regardless of whether it is in a paid
capacity or not.
— The type of support or supervision
that is necessary is offered to the person.
Local Strategic Partnerships can also demonstrate
an understanding of how to effectively involve service users in
the design, delivery and use of services. IDeA Knowledge (Improvement
and Development Agency) provides improvement support to local
government through news and practice examples. Further information
can be found at: http://www.idea-knowledge.gov.uk/idk/core/page.do?pageId=1
Further insights into the development of effective
user involvement may arise from the outcomes of the LINks (Local
Involvement Networks) pilot regarding the overview and scrutiny
element of local health services and how they can better include
and be more effective for service users.
People with diabetes are currently involved
in various service delivery activities including delivering peer
support, becoming lay educators, acting as User Representatives
and campaigners. Diabetes UK has also devised a toolkit that supports
community leaders to deliver awareness raising events about diabetes
to people from the South Asian communities.
7. Are there certain types of decision which
are more suited to consultation than others?
Consultation does span the spectrum of decision
making, from the level of individual need to national policy guidance.
For example partnership in care planning has been established
in health and social care legislation and policy. Diabetes UK
in a joint statement with the Association of British Clinical
Diabetologists have highlighted the importance of involving people
with diabetes amongst other stakeholders in consultation about
the impact of current service restructuring[72].
This is crucial to ensure people are not adversely affected by
reconfiguration and that any changes in who and how care is delivered
is based on the principles of best care, informed patient choice
and individual need, and that these decisions are made in partnership
with each patient. This is an example of how consultation at local
and individual levels can have an impact on how services are delivered
in light of national policy.
8. Do official consultations typically manage
to capture the views of the right people? What kinds of consultation
are most effective in engaging with the appropriate people?
No, official consultations do not always capture
the views of all the relevant people. It is important that a variety
of approaches to consultation are used. As noted earlier proactive
approaches must be put in place to ensure consultation is taken
to communities for example, to increase the opportunities of receiving
a broader response. In relation to recruiting for User Representatives
or capturing the views of people with diabetes from BME communities,
making arrangements to attend the following venues have been suggested
by Diabetes UK as possible avenues:
— Festivals and shopping areas.
— Healthcare workers, especially link
workers and those from the same ethnic background, can be drawn
on for their expertise and contacts.
— Advertise position/s such as User
Representatives in places people visit on a regular basis, such
as shops, temples and mosques.
As mentioned earlier User Representatives, patient
advocacy and other organisations/ bodies will need to have systems
in place to ensure that they have included diverse and many voices
in their responses to consultations[73].
9. How valuable are advisory panels in the
design and delivery of public services?
Advisory panels do have an important role. Local
mechanisms for informing the design and delivery of services can
be crucial to the development of services that reflect local need.
In diabetes care, Managed Diabetes Networks bring together relevant
local stakeholders, including User Representatives to advise on
the design and delivery of diabetes services in the locality.
These stakeholders bring their expert knowledge and experiences
about diabetes care to these networks. However as mentioned previously
mechanisms must also be in place to ensure that wider consultation
is undertaken by relevant stakeholders to ensure the advice they
give is representative.
11. How should measures of public satisfaction
take account of complaints about policy rather than administration?
Regular reviews of policy related complaints
should be undertaken and not only be fed into relevant national
departments but also local bodies such as Managed Diabetes Networks.
The implications of these types of complaint could then be considered
at the local level so that where appropriate, solutions to these
can be developed in line with local circumstances.
12. Are there situations where the views
and experiences of service users are irrelevant?
No, as the recipients of services, service users'
views must be taken into consideration if services are to be customer
focused and therefore centred on the needs of service users.
January 2007
69 Amos A F, McCarty D J, Zimmet P. The Rising Global
Burden of Diabetes and its Complications: Estimates and Projections
to th Year 2010. Diabetic Medicine. 5: Volume 14. 1997. Back
70
Chaturverdi N, Jarret J, Shipley M J, Fuller J H. Socio-economic
gradient in morbidity and mortality in people with diabetes: Cohort
study findings from the whitehall Study and the WHO multinational
study of vascular disease in diabetes. BMJ 1998; 316:100-106;
Mather H M, Chaturverdi N, Fuller J H. Mortality and morbidity
from diabetes in South Asians and Europeans: 11 year follow-up
of the Southall Diabetes Seurvey, London, UK. Diabetic Medicine
15: 53-59. Back
71
UK Prospective Study Group (UKPDS). Effect of intensive blood
glucose control with metformin on complications in overweight
patients with type 2 diabetes (UKPDS 34) The Lancet. Vol 352,
12 September 1998; Diabetes Control and Complications Trial DCCT)
Research Group. The effect of intensive treatment of diabetes
on the develipment and progression of long-term complications
in insulin-dependent diabetes mellitus. The New England Journal
of Medicine. Vol 329:14. 30 September 1993; UK Prospective Diabetes
Study Group (UKPDS). Tight blood pressure control and risk of
macrovascular and microvascular complications in type 2 diabetes
(UKPDS 38). BMJ Volume 317, 12 September. Back
72
Diabetes UK and the Association of British Clinical Diabetologists
(ABCD) Position Statement: Ensuring access to high quality care
for people with diabetes. Available at: http://www.diabetes.org.uk/About_us/Our_Views/Position_statements/Ensuring_access_to_high_quality_care_for_people_with_diabetes/ Back
73
Diabetes UK (2005) Guidance for Primary Care Trusts (PCTs) and
Diabetes Networks User involvement and the Diabetes National Service
Frameworks (NSF). Available at: http://www.diabetes.org.uk/Professionals/Shared_Practice/Care_Topics/User_involvement/User_involvement_-_Care_Recommendation/
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