The Gloucestershire Living With & Beyond Cancer Programme: A Cancer Patient Reference Group Case Study
Submitted By
Caitlin Lord
Patient Experience Co-ordinator
0300 421 1794
1.Project Summary
This project seeks to improve the quality of commissioning decisions though more dynamic patient involvement, thereby commissioning services that are better tailored to patients’ needs.
The process for improvement is service design. The intention is to improve this by better integrating patient/carer experience in design decisions. Organisationally, it is also intended to increase the value generated by the Patient Experiencefunction within the CCG and further develop matrix working across Patient Experience and Commissioning functions.
The scope of the project is Cancer Services Commissioning, specifically the new “Living With and Beyond Cancer” (LWAB) programme. A reference group of patients with current/recent experience of cancer services has been established to make a real-time dynamic contribution to the design of the new LWAB cancer service across its 6 workstreams (indicated as “Involvement” in diagram below).
The group also provides a focus for progressing user-led “Living –Well” activities such as “wellness events,” establishment of support groups and peer/buddy support. The group is a pilot for this type of involvement within the clinical programme structure.
The group is chaired by the CCG Lay Champion for Cancer Services (role detailed in appendix 1) and I support in my role as Patient Experience Co-ordinator. We work closely with the Commissioner for Cancer Services who leads the Cancer Clinical Programme Group in the CCG.
2. The Aims of the Project
The CCG’s 5 year Strategy “Joining Up Your Care” 2014-2019 commits to deliver change through“a focus on patient experience” and workingwith “patients, carers and the public to inform decision making.”
This project supports this aim throughestablishing a cancer patient reference group.This project seeks to improve the quality of commissioning decisions though more dynamic patient involvement in commissioning. The ultimate aim is that this will result in the commissioning of services that are better tailored to patient’s needs.
Delivering Improvement in the following Areas:
a.Quality of service plans.
To shape the development of the new LWAB cancer service: producing a more patient focussed/tailored plan through integrated involvement of patients. The initiative aims to move beyond a focus on the processof involvement to directly affect the output of the design process.
b.Effective use of “Experience By Design” (EBD) Techniques in a Commissioning Environment.
The EBD approach to improvement isusually applied in a service environment - in a hospital/clinic setting. However, we aim to explore this technique in a commissioning environment where the task is to design rather than reviewservices. This reflects the origins of EBD which was in the design of new products and founded on closely understanding customer needs, as they define them.
c.Better Integrated Working in the CCG
To further developthe way Patient Experience and Commissioning work together,building on existing matrixworking arrangements.
d. Democratic Accountability of CCG.
As a commissioning rather than a provider organisation the CCG can appear “arm’s length” to the patients it serves. This project is an attempt to “open” the organisation to patients/ the community, acknowledging the direct relationship the CCG has with Gloucestershire residents and its willingness to work in partnership with them.
3. Progress to Date
The reference group was formed 5 months ago following a patient/ carer workshop to launch the survivorship programme. It comprises about 15 patients/carers who are currently or have recently been in treatment. Members have links with other organisations including Sue Ryder, Age UK and Healthwatch. The group reports directly to the Cancer Clinical Programme Board and meets monthly and with regular attendance from the Cancer Commissioner and Macmillan leads for Cancer Survivorship.(Terms of Reference are attached, appendix 2)
It is still relatively early days for the group and work has been around:
- Establishing the group as a cohesive working body
- “Orientating” members to the LWAB cancer programme – its scope and aims.
- Developing the relationship between the group, the wider programme and its leaders.
- Exploring and documenting the members experiences and how these can be used to inform work in the programme
Specifically the group has:
- Developed the use of Patient Stories
Each of the group members hasbeen interviewed and recorded their “story” ofliving with and beyond cancer. These have been presented at the Cancer Clinical Programme Board and at the GP Cancer Masterclasses in order to communicate the realities of people’s experience and how services might better support them.
- Identifying Common themes from Experience
Common themes have been identified from members’ experiences. These have highlighted where “touchpoints” exist - particularly around diagnosis and recovery. These have been presented to the Clinical Programme Board and will be used within the worksteams in their design task.
- Promotion of the group and creation of a Virtual Network of Patients
The intention is that the group be a channel for wider involvement of people LWAB cancer. To this end the group has produced a film which introduces them and what the group hopes to achieve. It will be shown more widely within Gloucestershire patient groups to generate interest.
The film can be viewed via the link here
- Lead Role in “Living Well” Initiatives
The reference group has a key role in events to promote self –management and peer support. Discussions are underway to hold a first LWAB event providing information and access to professional advice for patients/carers. One reference group memberis engaged in setting up a Sarcoma support group and another is in discussion with the local council on setting up a brown badge parking scheme in the county. The possibility of a peer support/buddy register has been raised.
4. Reflections
There has been a great deal of enthusiasm and commitment from patients to give up their time and energy to this work. This has been the vital foundation upon which the work has been built and galvanising this energy is a success in itself. With this in mind early reflections are:
Working with patients and the public requires a different approach; ensuring enthusiasm is fostered and the impact of people’s contributions is drawn out as these are the motivators for continued involvement. This can be challenging in a traditional work environment where compromise as a result of competing priorities is accepted as part of the territory.
There is an important psychological element to running a group that comprises people with serious illness and who may be in active treatment. Explicit discussion about this within the group at an early point and statement of where/ how support would be provided would have been useful.
Initially I was very task focussed, as reflected in the group’s “Terms of Reference” however there has had to some compromise to allow for a “peer support”element when members share their current challenges. In retrospect this sharing is part of what makes the group cohesive.
Testing matrix working arrangements whilst developing a new initiative is difficult. In the early stages there was a lack of shared vision about the group because I was not sufficiently “embedded” in the commissioning team to develop this joint understanding. As my relationship with the commissioning team has developed so has this shared understanding.
Organisational culture remains an obstacle to patients and professionals working together. Concerns about confidentiality and governance are raised, as are issues about patients being representative or sufficiently robust to take on the role. Building this organisational confidence has been through contribution and practical demonstration of the group’s value. This is an ongoing process.
Future Plans
As the only standing group of patients “within” the organisation, this is uncharted territory and an action- learning project in progress. It is a joint exploration with patients/carers of what possibilities it presents both in terms of how to best affect decisions in the programme and also how to harness the groundswell of energy from cancer patients in Gloucestershire to help themselves and others live with and beyond cancer.
Appendix 1
CCG Constitution 2014- Role of the Lay Champions
The lay members with responsibility for patient and public participation matters will be members of the local community and bring that insight to the work of the Governing Body. These members will ensure that for all aspects of GCCG’s business, the public voice of the local population is heard and that opportunities are created and protected for patient and public empowerment in the work of the GCCG. Specific responsibilities include ensuring that:
- public and patients’ views are heard and their expectations understood and met as appropriate;
- the Group builds and maintains an effective relationship with Local HealthWatch and draws on existing patient and public engagement and involvement expertise; and
- GCCG has appropriate arrangements in place to secure public and patient involvement and responds in an effective and timely way to feedback and recommendations from patients, carers and the public.
Appendix 2
Cancer Clinical Programme (CPG)
Patient Reference Group(PRG)
Terms of Reference
- Purpose
The PRG is part of the CCG’s cancer clinical programme (CPG). The vision of the programme is to save lives and reduce the impact of cancer on the health and well-being of the population of Gloucestershire. The programme will transform patients ’experiences across GP surgeries, hospital care and community-based support.
The purpose of the PRG is to contribute to this work, by bringing a patient/carer perspective to this work. This will be achieved by drawing on the experiences of PRG members themselves and through patient engagement activities co-ordinated by the group.
- Reporting Responsibilities
The PRG is an advisory group to the Cancer Clinical Programme Board. Its work will be commissioned by the Programme Board and it will report to the Programme Board.
The Chair of the PRG will be the CCG Lay Champion for Cancer Services. A Deputy Chair will also be appointed by the group. These individuals will attend the Clinical Programme Board and report on the group’s activities. They will take any action back to the PRG.
- Role
The role of the PRG is to
- To provide patient and carer input into the work of the CPG.
- To review service plans and other pieces of work from the CPG Board from a user/carer perspective.
- To advise healthcare planners in setting local quality standards for cancer patient experience.
- To review user/carer information as requested, by the CPG Board.
- To promote wider engagement with cancer service users and their carers across the diverse population of Gloucestershire.
- To advise the CPG Board on opportunities and methods for user/carer involvement within cancer services.
- To undertake specific user consultation activities contributing to the work of the CPG as agreed with the CPG Board.
- To link with other cancer support and engagement groups as representatives of the PRG in order to communicate its work and gain contributions from the wider community.
- To contribute to the CPG newsletter, ensuring patient and user issues are represented.
- To contribute to and be part of CPG public / stakeholder events arranged as part of its work to develop services.
- Membership
The PRG will comprise:
- Chair (CCG Lay Champion for Cancer)
- Deputy Chair (Appointed by the group)
- 14 members
- CPG Patient Experience Officer ( performing a secretary function to the group)
The Commissioner for Cancer Services will attend the meeting as required and at the request of the PRG Chair to brief on CPG Board work and take part in key discussions.
Professionals representing other organisations supporting service users may make up the membership, though the majority of the membership will be people who have used cancer services.
As the group is intended to have primarily a local focus, its members will be registered with a Gloucestershire GP. They will also have recent and relevant experience of cancer services in Gloucestershire which may extend to include specialist services outside the county accessed by Gloucestershire residents.
Continuity of membership is desirable. It is recognised that this is a voluntary role and users/carers will have other commitments that may make attendance difficult. It is suggested that a buddy system be established amongst members to support each other. In addition the CPG Lay Champion and Patient Experience Officer will provide support to members, by briefing about the wider work of the CCG and CPG, providing context for the work.
- Appointment to the PRG
The Cancer CPG will be accountable for appointments to the group and the process will be directed by the CPG’s Lay Champion.
- Schedule of Meetings
The frequency of the PRG meetings will reflect the work schedule of the programme. This will be agreed with members.
The PRG will be established initially for a 12 month period after which its role will be reviewed for its continued fit with the CPG’s work plan.
- Payment of Expenses
Members of the PRG will be required to complete and submit an expenses claim form to cover out of pocket expenses such as car parking, travel and where agreed with the Commissioner for Cancer Services, respite carer expenses.
- Confidentiality
This group is part of the internal structure of the Gloucestershire Clinical Commissioning Group. Discussion within it is deemed confidential to the organisation unless otherwise agreed.
The PRG may consider anonymised/amalgamated feedback from service users though complaints and concerns. However the PRG does not have a role in discussing identified individuals concerns. The Patient Experience Officer will signpost/support any members in resolving these through other appropriate routes.
If the PRG was to become involved in work which might be commercially sensitive, for example the procurement of a service, PRG members will be required to sign a confidentiality agreement.
Review
These Terms of Reference will be reviewed annually.
Review date: May /June 2015