National User Steering Group for Cancer Peer Review

National User Steering Group for Cancer Peer Review

NATIONAL USER STEERING GROUP FOR CANCER PEER REVIEW

Wellington House, London, Tuesday 22nd September 2009

Minutes

Present:

Olga Janssen, User Reviewer (London) - Chair

Ruth Bridgeman, Acting National Coordinator, National Team

Gerald Shenton, User Reviewer, (Central), co-opted member

Colin Sloane, User Facilitator, Yorkshire Cancer Network

Joan White, User Reviewer, (Central) - Vice chair

Hugh Butcher, User Reviewer, (North)

John Chapman, User Reviewer, (North), co-opted member

Jeanette Smalley, User Facilitator, Lancashire & South Cumbria Cancer Network

Carolyn Morris, User Reviewer (South)

Mike Vincent, User Reviewer (South)

Patricia Jupp, User Reviewer (London)

James Heasman, Quality Manager (South)

Naimisha Gohil, Assistant Quality Manager (Central)

Pat Roberts, User Reviewer (Central)

Catriona Calvert, Quality Director, National Team

Zara Gross, Admin Asst, National Team

1. Introductions and Apologies

Olga welcomed Catriona and Zara to their first meeting of the Group. Catriona, substantive Quality Director for the North zone, has returned from maternity leave on a part-time basis with a remit for managerial aspects of National Cancer Peer Review to include user and nurse director engagement, and vetting of internal validation reports.

Apologies:

Evadney Gordon-Hill, User Reviewer, (London), co-opted, BME remit

Andrianna Davis, Project Assistant, National Team

Millie Forde, Assistant Quality Manager (North)

Louise Wilson, Quality Manger (North)

Angela Hoyes, Quality Manager (London)

Lorraine Winship, Quality Manager (Central)

Lynsey Honeyman, Assistant Quality Manger (North), maternity leave

Lisa Cunnington, Quality Manager (North)

Dave Ardron, User Reviewer, (North)

Claire Langslow, Quality Manager, Central Zone

Tim Jackson, Nurse Director SELCN

Christopher Hudson, User Reviewer (London), co-opted member

2. Minutes of 23 June for accuracy

Minutes were agreed with the following three amendments.

Pg 6 – 7.1. 5th para.

Pat raised concerns regarding the statement relating to co-ordination. The group agreed to amend to: ‘There is not a co-ordinated approach for users for peer review.’

Pg 9 – The title of the group that John Chapman sits on was amended to: NICE Colorectal Management and Rehabilitation Guidance & Development Group

Pg 9 – Clinical Reference Groups – It was agreed to amend ‘it may be possible’ to ‘it will be possible.’

Some members have not recieved copy of Stephen’s presentation on colorectal findings.

ACTION: Andrianna Davis

Stephen’s presentation on colorectal findings to be re-circulated.

3. Matters arising

3.1Nurse Director recruitment.

Ruth has approached Tim Jackson (Nurse Director – SE London CN), who has agreed to join the group, but was unable to attend this meeting. He also sits on the Palliative and Supportive Care group and the London ZAG.

ACTION: Andrianna Davis

Tim to be included on distribution lists.

3.2Documentation on CQuINS

The National User Steering Group Annual Report has been uploaded on to CQuINS. As of June 2009, minutes of the NUSG will also appear, once they have been agreed by the NUSG.

ACTION:Catriona to take forward and implement once agreed.

Post meeting: NUSG June 2009 minutes are now on CQuINS.

3.3Recruitment leaflet

The recruitment leaflet has been delivered to Zonal teams. This would be used for Zonal training events and would be available via CQuINS. It can be requested directly from Zones by Cancer Networks.

3.4National User Reviewer Database

This will be held centrally by Andrianna. Each zone had been contacted requesting details of their patient/carer reviewers. It was acknowledged that details cannot be shared unless consent is given by an individual.

Zonal Teams have emailed reviewers and once permission is given this will be forwarded to Olga.

A discussion took place regarding methods of maintaining privacy. Mike highlighted ways of ensuring privacy is maintained when emails are circulated, either by:

a) Send to oneself and bcc ( blind cc) Reviewer list

b) Putting a note in the title highlighting the issue relating to use of details.

Olga felt it was important to specify two categories for user reviewers’ consent of contact details being passed on, since reviewers may agree to individual access, but not wish to extend to all user reviewers.The reason for the request should also be given, i.e.

1) details given to the designated individual zonal user representative on the NUSG. This is to facilitate 2-way communication from and to the NUSG. It will enable the NUSG user rep. to inform zonal user reviewers on developments and consult with them regarding issues to be raised.

2) other user reviewers, for the purpose of mutual support.

The request for permission could usefully be included in the reviewer application form.

3.5Zonal Advisory Groups (ZAG)

It has been agreed by the Executive Group that Patient/Carer issues would be a standing agenda item on all ZAG agendas.

ACTION: QMs to ensure ZAG agendas reflect the above.

3.6Deselection of Reviewers

Deselection of User Reviewers to be addressed by the Executive

Group and will appear on a future NUSG meeting agenda.

ACTION: Deselection to appear as a future NUSG agenda item.

3.7Progress on benefits claimants accessing honorarium.

Possible strategies for making it possible for benefits claimants to access the zonal and national honoraria for user reviewers were put forward. However, due to the complexities of the tax system, it was agreed that this should be followed up by the individual claimant.

3.8Clinical Reference Groups

Ruth reported that discussions were taking place with the National Cancer Intelligence Network (NCIN) regarding the merger of their Clinical Reference Groups (CRG), with the NCPR version. It was noted that the NCIN CRG already benefited from user engagement.

3.9.Progress on CQuINS compliance screen on user measures

Ruth advised that discussions were taking place with Mayden Health regarding the ongoing development of CQuINS. A current work-stream is looking at a feature on CQuINS for mapping different themes. This will facilitate a network view on each subject area eg. patient/users’ experience or research. The work has commenced but will require a mapping exercise for the coding, which is being undertaken by Sue Knights (Senior Analyst for Peer Review). Although there is no set completion date it is envisaged that the two streams of work will be completed within the next couple of months.

3.10.Outcome re payment of user reviewers for internal validation

Colin advised that Yorkshire have agreed to pay service users who are involved in IVs of the Network, but this does not extend to user involvement in IV in trusts in the network. Discussion revealed this to be very much a local decision, not replicated by other networks.

Jeanette highlighted that potentially a precedent could be set regarding the payment of users for all elements of work undertaken.

This was a common view amongst user facilitators.

John questioned whether the patients/carers may feel ‘slightly different’ if receiving a honorarium for local work.

Mike raised the issue of an in-balance between NHS professionals who attend the IV panels as part of their job and user reviewers who are volunteering. If an organisation was paying a user reviewer perhaps their views would be taken more seriously.

Carolyn felt there was an issue about making a gesture, to recognise the time taken to prepare for and attend the meetings. Moreover, user reviewers can bring considerable skills and knowledge from their working lives to contribute to the review, over and above their experience of cancer services. Carolyn also drew members’ attention to the work being undertaken by Macmillan on identifying user impact, to which she had contributed, which may inform the payment debate.

Mike stated that he had not received any expenses for undertaking the internal review and this would cause him to reconsider his position in future.

Ruth noted that there is a lot of contention around the subject. Honoraria are used as they immediately avoid any employment liability. As soon as an organisation adds a user reviewer to the payroll then there is a responsibility to ensure the individual pays tax.

Ultimately it is up to trusts to manage their quality assurance process for IV and national peer review cannot endorse or recommend.

Hugh alerted members to his intention to produce a document on “getting service user feedback”, which would look at different methodologies.

It was agreed that the NUSG should write to Networks recommending that as a ‘good practice’ organisations should be encouraged to reimburse at the very least expenses for user reviewers.

ACTION: Mike and Carolyn to draft a letter from the NUSG to Network Directors.

3.11Zonal Advisory Group terms of reference.

The nationally agreed ZAG terms of reference will be sent out with the minutes.

The requirement to have at least 2 user reviewer reps on ZAGs was noted and one of these should also be a representative on the NUSG.

The following NUSG members present at the meeting are on ZAG groups:

Carolyn Morris (South)

Joan White (Central)

Pat Roberts (Central)

Hugh Butcher (North East)

John Chapman (North West)

Mike Vincent (South)

Olga Janssen (London)

ACTION: Andrianna Davis.

Nationally agreed ZAG terms of reference to be sent out with the minutes.

3.12NHS Centre for Involvement disbanded.

The above had been disbanded. Their PPI materials are available on CQuINS in the ‘Resources’ section.

4.Presentations and discussion on progress for 3 NUSG work streams

4.1Network User Measures

The group were commended on their work.

Ruth and Hugh gave a brief presentation (circulated at the meeting) and invited members to feedback by 2nd October 2009.

A discussion took place regarding potential omissions/areas for improvement

Mike suggested that the there is a need to include measures relating to User Involvement in Commissioning. Mike commended the use of the word ‘enabling’ as a valuable concept for the user measures; it had been used at the Survivorship Conference.

Jeanette noted the potential level of work involved for groups and this would highlight the need for Network User Facilitators. Measures relating to service improvement would be advantageous. Also, training expectations should not be limited to service users, but extended to healthcare professionals.

Carolyn commended the work undertaken, but wished to see detail relating to care plans. In some cases there were training needs for healthcare professionals as well as users, in terms of user issues e.g. social needs.

Olga felt there was a need to provide greater definition of ‘user involvement’ at the beginning of the measures. This would reduce the tendency to confuse user involvement with user support. A definition of the 3 different types of care needs could also be at the front. Olga felt the measures seemed process driven and would benefit from consideration of how far guidelines have been implemented and their impact.

Hugh advised that when the measures go out to consultation, the background would go alongside the revisions. In developing the measures the team had tried not to be too prescriptive and it is acknowledged that some networks will interpret things differently to other networks.

There had been some restrictions in developing the measures. Existing measures review something in the IOG, which is the source document. There is no IOG for user involvement. There is a need to encourage people to read Hugh’s “Issues” paper as the source document. It is based on national policies and provides the rationale for the revised measures. Getting the measures through Gateway, which ensures that measures are based on national policy, is critical. The Evidence Guides are yet to be developed and these will provide further detail. The expert group will need to identify the ‘key questions’ relating to revised measures.

Olga highlighted the need to ensure that any element of tokenism is eliminated. It is anticipated the implementation of an annual process will aid this.

Following a second meeting of the expert group on 2nd October, and any other feedback, a second draft of the measures will be drawn up, submitted to Ian Manifold for advice and sent out for 3 months’ consultation from November til the end of January 2010, with the aim of going public in March 2010.

ACTION: Members to feedback any comments relating to detail in the draft to Hugh/Ruth before October 2nd.

4.2Communications (incl. role of NUSG zonal user reps)

Pat and Joan explained that they had tried to obtain opinions from as wide a spectrum as possible.

The appointment of Catriona as national lead on user engagement in Peer Review was warmly welcomed.

It was felt a number of improvements could be made in terms of clarifying channels of communication. CQuINS needs to be established as the first point of reference, including:

  • detail regarding who the zonal team member is for users.
  • identification of user reviewers who represent users at ZAG meetings.
  • the name of the link user members for the zone on the NUSG

In each case there needs to be an explanation of the role.

Other issues for improved communication were:

  • clarification of the role and responsibilities of the network partnership facilitators as regards peer review
  • who liaises at network level with the zonal team
  • distribution of PRagmatic within networks
  • publicity for peer review and application procedures to become a user reviewer
  • de-selection process should be unambiguous and professional. If user reviewers are not up to requirements, they should be offered an interview and support if needed. If they are not required then they should be informed.

Pat highlighted the importance of resolving lines of communication for zonal NUSG members acting as a link with user reviewers in their zone. She also felt there needed to be greater clarity on the role of user members appointed as links. It was agreed that Pat/Joan should review the NUSG terms of reference to see if the statement adequately captures the role requirement of a NUSG link zonal rep.

ACTION:

1. All members to email Pat/Joan with issues relating to communication

2. Pat and Joan to review the clause in the NUSG ToR with regards the zonal link user role.

Ruth and Catriona took the opportunity to describe the work Catriona would be undertaking.

Ruth highlighted the positive progress made by the group, to the extent that a greater level of senior assistance/support was required. Consequently Catriona would work towards continuing the development of the group in collaboration with members, but particularly ensuring that improvements in communication remain at the forefront of activity.

Catriona described some elements of her role:

  • Improvement in communication.
  • Standardisation of documentation (eg User Reviewer application forms).
  • Review of the de-selection process.
  • User training – review of.

Catriona will be meeting with Olga, Joan and Pat later in October to

take these issues forward.

4.3. DVD – Marketing of

Olga reported that the DVD “are you for peer review?” aims not only to assist recruitment and training of users for external visits but also for internal validation. The DVD has been well received. A dozen interim copies have been made and these have been circulated to networks and others requesting copy, including Northern Ireland. A budget has been agreed for marketing the DVD, with an initial edition of 500 copies.

Proposed distribution is to Trust Cancer Managers, Network Directors and User Facilitators, Hospices, PCTs, SHAs. Some discussion took place regarding the identification of the most appropriate person within a PCT or SHA. This information could be provided by the Zonal Teams. Draft letters to these targeted groups would be circulated to NUSG members for comment.

A continuous loop showing of the DVD at the October NDP with an A4 handout is planned in order to raise awareness of the resource.

Three different packing styles were circulated to members and on voting the plastic case proved most popular.

It is intended that the film to be available via CQuINS. However it was noted that the ability of an individual to achieve a ‘quality download’ would be dependent on their IT kit. For this reason and to pre-empt

enquiries and complaints, uploading onto CQuINS would follow availability of DVD duplicates.

James suggested using YouTube or Facebook to upload the film and then enable people to download it as required.

ACTION:Olga to circulate draft letters. All members to feedback any comments.

5. Recent developments in NCPR

Ruth reported that:

  • Stephen Parsons was covering the vacancy left by Teresa Moss’s departure

and acting as Lead for the National Cancer Action Team.

  • Ruth now Acting National Coordinator for Peer Review.
  • Interviews being held on 30/09/09 to identify a short-term Deputy Coordinator from the Quality Managers.

Post meeting: Julia Norton has been appointed