Select Committee on Health Written Evidence

57. Evidence submitted by Macmillan Patient and Public Involvement, Central South Coast Cancer Network (PPI 56)


  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.


  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.


  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.


    (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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