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					Meeting of User Involvement Group
Held on 19 February 2009 at 10.30 – 12.30 In Board Room at South Plaza

Notes of Meeting
Present: Angela Stagg Claire Corry Malcolm Gamlin Val Hart Louise Jones Bob Lang David Metherell Pat Murphy Joe Norman Jo Poulton Frank Rhodes Fiona Stobie Pat Turton Val Weston Alison Wint Joanne Abbott Chris Allen Pam Arnold Louise Bass Janet Bliss Marion Burrell Corrie Davey James Ellis-Jones Olive Esposito Sue Evans Judy Geisow Christine Jones In the chair User Representative ASWCS, Patient and Public Involvement Lead Manager User Representative User Representative Research Nurse, YDH User Representative User Representative Information Centre at BHOC UIG Vice Chair Assistant Divisional Manager, UH Bristol User Representative Cancerpoint Development Manager, Penny Brohn Principal Lecturer in Cancer Care, UWE User Representative ASWCS, Associate Medical Director Mrs Lewis Catherine Le Roy Jan Little Keith Long Rev Masding Tara Mistry Karen Morgan Sue Stengel Tariq White Paula Bond Margaret Douglas

Apologies:

1

Welcome & Apologies Apologies were noted as listed above. Claire Corry welcomed Val Hart into the User Involvement Group as a new member. Claire introduced Jane Hadler as the new office administrator for the ASWCS and will be supporting the group and taking any notes at meetings.

If you need this document in a different format please telephone ASWCS on 0117 900 2322
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Notes User Involvement Group 19-02-09 2 Appointment of New Chair Joe Norman welcomed Angela Stagg as the new Chair of the User Involvement Group, Angela looked forward to working with the group to make a difference in cancer services 3 Early Diagnosis Audit Alison Wint presented an overview and background to National Awareness & Early Detection Initiative (NAEDI) which has come out of the Cancer Reform Strategy. The initiative is to shift the focus from Secondary care to Primary Care. It includes seven work streams which include: • • • • • • • • Awareness Measurement Promoting Early Presentation Reducing Primary Care delay Key Messages International Comparisons New Research Prioritise Primary Care Access Evidence of low awareness of early symptoms

Alison Wint displayed the template version being used by GPs in the ASWCS pilot. 21 practices are participating in the pilot with feedback by the end of March 2009. Once the results from the pilots have been received, the National Audit Steering Committee, of which Alison Wint is a member, will agree a final version of the template which will then be used for the National Audit. After the presentation there was some discussion as to which member of staff completes the questionnaire, whether a note could be taken of the number of times a patient visited the GP in the year prior to the cancer diagnosis and around the difficulty of collecting such information since any patient could need or choose to visit the GP for a number of unrelated reasons. Alison Wint reported a very positive response from GPs; participation in the audit had been over-subscribed. It is uncertain whether GPs nationally will feel as enthusiastic when participation in the audit is obligatory. Completion of the audit is very time consuming. Pat Turton asked how the audit template will pick up GPs’ late diagnosis of cancer and asked if this could be raised with the National Steering Group. For the ASWCS pilot GPs must submit their completed templates by the end of March 2009. The format of the national template would be agreed in the next six months and will then be rolled out to all practices in the UK.

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Notes User Involvement Group 19-02-09 4 BHOC ‘Refresh’ and Patient Experience Project A presentation was made by Jo Poulton on a project set up to improve patients’ experience and satisfaction with the cancer services at the Bristol Haematology Centre (BHOC). The project includes four trusts nationally; Chelsea and Westminster, Norwich, Sunderland and Bristol. Refresh project team surveyed over 250 people including cancer patients, visitors to BHOC, staff; consultants, nurses and hospital porters. The results showed overall satisfaction with existing facilities had been good but there were areas for improvement. Areas for improvement include: • Teamwork and coordination - delayed communication between consultants, surgeons and GPs resulting in inconsistent messages to patients Time to care – staff not having enough time to spend with patients Facilities and environment, e.g. availability of TVs for patients Parking and transportation – parking problems outside the BHOC Scheduling and waiting times – patients waiting for long periods in outpatients department Patient communication and information – poor communication between patient and staff at the BHOC

• • • • •

Areas for improvement included better signage in the hospital, improved communication between patients and staff, realistic estimates of waiting time for patients, better car parking facilities, re-designing the layout of the cancer department making it more user friendly for patients. The overall cost of Refresh improvements was £3.7million with a large portion from Charity funding. Improvements would take approximately one year. The group generally welcomed the improvements. Claire Corry mentioned that the car parking information and bus and rail information is included in the information pack. Pat Turton mentioned the notice boards in the Cancer Department were not easily accessible for visitors. Jo Poulton noted this. Jo Poulton said that people would be welcomed on the Refresh Steering Group which would meet Monday 23 February 2009 at 10.30. She would welcome any other comments on the Refresh programme and also would like any volunteers to read the new information booklet. Action Network to distribute Jo Poulton’s presentation to the group 5 Chewing Gum and Ileus Trial Louise Jones distributed documents and questionnaires on the EQ-5D Chewing Gum trial on post operative patients on planned elective surgery of the intestine. After surgery patients can experience Ileus (inactive bowel). The trial hopes to show that when patients chew gum the intestine can be tricked into thinking it has been fed and so stimulates the bowel to start working again. The trial involves up to 400 patients from the Bristol Royal Infirmary and the Plymouth NHS Trust The group commented on the questionnaires being used in the study as follows:

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Notes User Involvement Group 19-02-09 Document – “A randomised trial of gum chewing to reduce post-operative Ileus” The group felt that Question 5 “What is your highest education qualification?” did not include other qualifications and could undermine a patient. Louise Jones explained that this was a baseline question and not a significant research question. Document – SF36 Question 3 (h) “walking several blocks”: this was an American term and should be converted to yards or metres for British patients. Pat Turton requested Louise to refer the group’s concerns back so that the documents could be rewritten before the trial. Louise said she needed any further comments before the 26 February 2009 and would send her email address to the UIG. Action: All to email any comments to Louise Jones by 26 February 2009 6 Prostate Awareness Month Malcolm Gamlin described his involvement in Prospect – the Prostate Patient Support Group which he chairs. The group has around 55 members and was successful in promoting prostate cancer awareness locally with stands in local shopping centres, on local radio and Marks and Spencer has information in their stores, Fun Run days etc. He explained that Prostate Awareness Month is in March and asked for support from the group in distributing leaflets or any ideas for raising awareness. Malcolm circulated to the group a draft copy of the Prostate Awareness poster for comment. One key area for concern is with Black African Caribbean men as it is difficult to get information to this group. Claire suggested contacting Marion Burrell (Support and Development Manager) who may have more information on community centres or churches, etc. Various other suggestions were made including contacting the afroCaribbean churches and the Malcolm X Centre in St Paul’s. Action: All to comment on the Awareness Poster and help distribute it 7 SSG Forum Angela Stagg reminded the Group that ASWCS aims to secure two user representatives on each of the Network Site Specific Groups (SSGs) and to a great extent this has been achieved but additional representatives are needed: specifically for the Skin SSG which will be undergoing Peer Review later this year. Sarcoma, Neuro-oncology and Urology SSGs also require representatives. Claire Corry acts as the first point of contact for any users expressing an interest in becoming user representatives at the SSGs. Volunteers are supported in various ways, including discussion with existing members, support from Claire and a “buddy” system. Bob Lang mentioned a possible volunteer for the Skin SSG and agreed to provide Claire with contact details. A copy of the SSG User Feedback Report for July - December 2008 had been circulated with the agenda. These regular reports will continue to be produced so representatives are asked to ensure that they complete the feedback forms and submit them to Claire after each SSG meeting they attend. Pat Turton asked how users are being involved in the developments regarding chemotherapy and radiotherapy and it was agreed that this matter should be raised with Tariq White.

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Notes User Involvement Group 19-02-09 Action: CCorry will raise the chemo-therapy and radiotherapy representation with Tariq White Action: Any UIG members interested in or aware of volunteers wishing to know more about the role of User Representative on one of the SSG to contact CCorry Action: Corry will contact AWint requesting feedback on the End of Life Report which is tabled for discussion at the next UIG meeting 8 2009 meeting dates Claire distributed the new dates for the User Involvement Group in 2009 and noted the small mistake on the date for July should read June. Action: Claire to re-circulate 2009 meeting dates

8 April 2009 23 June 2009 30 September 2009 14 December 2009
9 Any other business

10.30-12.30 10.30-12.30 10.30-12.30 10.30-12.30

Board room, South Plaza Board room, South Plaza Board room, South Plaza Board room, South Plaza

Claire Corry announced she was having a baby in May 2009 and will be on maternity leave for about seven month. The ASWCS are hoping to make her role permanent and recruit a maternity cover.

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