57. Evidence submitted by Macmillan Patient
and Public Involvement, Central South Coast Cancer Network (PPI
56)
1. EXECUTIVE
SUMMARY
There is a need to clarify for patients, carers
and "citizens" the nature and value of involvement.
This would benefit from identification of the two strands of involvement—ground
level, including day to day interface and participation in decision
making and treatment and care choices, to the broad level of involvement,
involving partnership approaches to generate policy and organisational
service improvement and change.
There needs to be increased commitment and structure
to facilitate ground level engagement, which will involve training
and education of health care workers. For broad involvement, patients/citizens
need to be able to see the results of their efforts; this will
require robust links, resource and skilled facilitation to achieve
and maintain.
2. INTRODUCTION
The concept of Patient and Public Involvement
is firmly embedded in the structure and organisation of the Central
South Coast Cancer Network where I am employed as a Lead to facilitate
this function. A nurse by profession, I have 20 years experience
within the acute health sector, in both practice development and
clinical nurse specialist roles. This, coupled with my current
role has enabled me to develop a realistic overview of the patient
and public involvement agenda in health, both at the ground level
and broader, strategic level.
3. THE PURPOSE
OF PATIENT
AND PUBLIC
INVOLVEMENT
Many patients and their carers remain unclear
as to the nature of "involvement". It would be helpful
if there was recognised, clear definition around the levels of
involvement, to identify:
(a) ground level patient involvement in day
to day clinical and social treatment decisions and choices; and
(b) broad involvement and feedback approaches
including membership of forums/LINks, etc and generation of policy
and organisational change.
4. What form of patient and public involvement
is desirable, practical and offers best value for money?
(a) Ground level: In daily clinical practice,
patients report that their feedback to practitioners goes unrecorded-
if there was a clear mechanism for these opinions to be captured
at the time, published and responded to, themes may emerge which
would inform the need for change. This would offer the best value
for money, by reducing the need for resource intensive surveys
and one-off events. It would also ensure that themes for improvement
were increasingly service user driven. For example, many oncology
patients describe lengthy waits in clinics, but their suggestions
of how this process could be managed more effectively can currently
go unheeded.
(b) Broad involvement: In our experience,
patients and their carers describe that they are keen to be involved
at a local level, where they can see the benefits and changes
that occur as a result of their actions or feedback. Many patients
have difficulty in travelling, or prefer to work at a local level.
By increasing the geographical area, and clinical patient flow
routes served from PCT's to Local Authority boundaries, this may
actually deter patients from attending or being enthusiastic about
becoming members of LINks. From the perspective of cancer patients,
one local authority may encompass a number of health providers
and commissioners.
The new LINk scheme may disadvantage the involvement
of those with an interest in health, as the inherent social care
remit would be anticipated to be stronger and more highly represented.
Recruitment of patients to LINks is likely to be even more complex
than is currently experienced, as it may be difficult for people
to see the relevance and how they link back successfully to health
care provision.
5. RECOMMENDATIONS
FOR ACTION
(a) Ground level involvement: Increase the
profile for patient and public involvement, choice and joint decision-making
to patients through advertising, and ensuring that this is embedded
through education, training and the knowledge skills framework
as an essential part of all health service roles. Ensuring that
it forms part of objective organisational work plans and outcomes,
as in the Cancer Measures (2004) will lead to greater awareness
and commitment from health professionals. Another option would
be the development of NHS health trust "Patient Involvement
Champions" to raise the profile, facilitate and implement
projects and promote organisational focus.
(b) Broad Involvement: Ensure that there
are robust accountability, governance and defined communication
links and responsibilities to both social care and health providers
and commissioners. This will enable patients/citizens to see demonstrable
service improvements and changes as a result of their influence
and involvement, which is essential to maintain engagement.
One of the main complaints from patients currently
involved is that this is the missing link- there needs to be a
strengthening of the feedback system to people who have participated
and offered their time and effort to express their views and ideas.
Appropriate funding to ensure quality facilitation,
training and development opportunities and administrative support
to all members of LINks is essential and should be ring fenced,
as in times of financial pressure can be seen as a soft target.
Wendy Keating
Macmillan Patient and Public Involvement Lead
Central South Coast Cancer Network
January 2007
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