Wolverhampton Patient Advisory Cancer Team (PACT) Notes of a Meeting held on Wednesday, 11 June 2014 5.00-6.45 pm at Action for Independence, Albert Road, Wolverhampton PRESENT: Jean Hancox (JH) Acting Chair David Hellyar (DH) Co-Chair Robin Comley (RC) Treasurer Janet Aldridge (JA) Patient John Hollingshead Patient Sheila Varian (SV) Patient Wendy Trainor (WT) Mother of patient David Rowlands (DR) Lead Cancer Clinician RWHT Jacqui Cutler (JC) Minutes APOLOGIES: Pat Roberts, Diane Wright, Anna Jones, Kate Fernandez, James Owen Agenda No. Reference Action By 1. Introduction and Apologies Jean welcomed everyone including new member, Wendy Trainor. Everyone present then introduced themselves to Wendy. David Hellyar said that we would be interested to hear of her experiences as a mother of a young daughter who has a Cancer. As a group we might learn something of an area that was perhaps outside our experience, being a group whose members are all adults with experience of Cancer. 2. Minutes of previous meeting These were agreed as correct except for a correction to the top of page 2 which should have said that we were getting re-imbursed for room hire up to 31 March 2014, not we would not be re-imbursed. 3. Matters Arising from previous Minutes With regards to Agenda item 3. from last month s meeting (and WorkPlan Item 1.8), JH said that a Macmillan GP had been appointed. Her name is Dr Mani Samra, she is the Cancer Advisor for GP s in the area and also for the CCG. 1
Item 5. With regard to the payment of Jacqui Cutler for her time, she had now been paid for the January and March meetings. Item 7. PACT Skills document. RC had now put this document on the PACT website. Unrelated to the above, DH asked DR if he thought that there was good feedback to the CS Groups, and between the CN Specialists and these groups. DR said that the flow of information/communication seemed to be continuing much the same. RC said that with regard to the Head & Neck Group and the Improving Outcomes Group, the target had been raised from 50 to 100%. JH said that the group felt that there should be a room for newly diagnosed patients to use, as this was a very sensitive/emotional time. This was probably happening with Head & Neck patients with money from fundraising events, but not for patients in other areas. 4. Cancer Awareness Day JH explained that this was being held on 26 June 2014 from 12.00 to 6.00 pm at Wednesfield Community Centre. The event was largely being organised by Macmillan. JA had a lot of material for our stand. A rota was needed for the day. DH said he was available for the day. JH would be available and was already going to be there on the Breast Cancer Support Group stand. JA said unfortunately, she was unavailable. RC said he would be away. John Hollingshead said he could go along. KF (not present) had already expressed her interest in attending. New member Wendy, said she would be interested to go along. PR would be going. DR said he would be going along to have a look at what was going on at the event. As DJ would not be available for the above event, and because she had to leave the meeting early, JH moved an item from AOB to here, to say that she had received a letter from Dick James tendering his resignation from PACT. She said that he had been in the group a long time, and perhaps it would be nice to get him a gift to thank him for his work over the years. This was agreed to by those present. 5. Travel Expenses RC circulated copies of his budget for 2013/14 to the Group. Despite the figures showing 44p per mile, the Hospital would only pay 23p per mile. There followed discussion around travel expenses and the wider area of the Trust holding PACT s money. RC had asked Catherine Wilkes in the Accounts Department at the Hospital if the money could be transferred to an independent Bank account. This was 2 months ago and he was still waiting to hear. DR said that he understood James Owen had been looking into this matter. It included contacting NHS England. There was no conclusive answer at present. DH said that he would contact Catherine Wilkes himself to ask why it is taking so long. 2
He asked if DR could find out if the Hospital would give the PACT money to the CCG, as an alternative option. NB Jean Hancox asked JC to make a note that this should be put on the Agenda for next time. 6. Payment of Secretary Please see under Matters Arising from previous Minutes 7. Meeting with Paul Uppal, MP RC and JH had been to the event organised by Paul Uppal. This was seen as an important opportunity as he would be involved in drawing up the Tory Manifesto on Health. Unfortunately, he did not know anything about funding matters, and he had not heard of PACT, although he said he would look at our website. In relation to funding, DH then asked DR with the dissolution of the PCT and the new system, is it not true there is some re-configuration of services? DR said that there are the NICE guidelines, and what you do in your local hospital, but there are no overseeing guidelines. JH felt that there was a good system which worked before the current Government changes. Despite their promises that patients would be priority and at the top of the agenda, we were actually down on the floor and being trodden on to boot, instead. She said that she and Robin Comley had said to Paul Uppal, that the funding for health services was now a bit of a mess. Still on the subject of funding, and with regard to a venue for PACT meetings which was free, there is possibly Whitmore Reans Health Centre. 8. Work Plan Due to time constraints this would be left to a future meeting. 9. The role of PACT DH said that he felt that the powers that be do not see groups such as PACT as having a role or use to play in the future. He thought that they were patronising. David said that we (as a group) needed to spend some time thinking about where PACT was going. He thought our role had changed and we should focus as a group on Cancer services in Wolverhampton and the community. We should set ourselves up as a specialist advisory body, separate to the Trust, which patients can come to. He felt that the other related bodies/organisations that other members particularly Robin went to, were a waste of time. The professionals were not really interested. A meeting that David had been to was a most disheartening example. Asked what he thought, DR said that 5 years ago with the network, things were working as they should, and there was a more productive flow between groups and the Hospital. DH said that he would contact DR separately to talk another time about the way forward for PACT. 3
10. RWHT update DR Peer Review: The timescale had been brought forward to the 30 th June. JH asked if JO could send information to her and Pat Roberts about this and the role of service users. Patients would need to know what they had to do if they were to be involved, as it could be daunting. DR said that from their side all they really wanted were people who could contribute something and challenge. As a part of the Peer Review there were also 2 short days sessions on the 22 nd and 31 st of July, but the 30 th June was the main full day. DR said that James Owen had written a bid to Macmillan for electronic equipment to be used for processing holistic needs information much more efficiently. DH said related to Peer Review, above, he had been told by someone that with Offsted Inspections in Schools, the best ones were unannounced, and that this was also the case with the QCC and health. JH PR had asked her to ask DR about things she had heard about Urology and robotic surgery. There was the equipment, but not the staff/specialists to carry out operations. DR said that somebody had been appointed now for one of the roles. There had been staff off on Maternity and with a serious health problem, but these were being resolved. He said that they would now be going from 1 to 3 Laparoscopic Surgeons. PR had also been concerned about the Urology targets. DR said that there was a huge referral/waiting list, but that these were being dealt with as best they could. This type of surgery could also be done in Birmingham. JH said that with regard to Breast Cancer referrals what was happening? DR said that again, there had been problems, but that they were now being resolved. Saturday morning Clinics were having to be held at present, to meet demand. There had also been other problems such as a Mammogram machine which had broken. JH said that the most traumatic part of Cancer was the waiting for the diagnosis, and she felt things needed to be handled better. 11. SCN feedback This item was deferred to a future meeting because of limited time. 12. Speakers This item was deferred to a future meeting because of limited time. 13. Any Other Business Jean Hancox tendered her resignation from the role of Co-Chair of PACT, although she would remain as a member of the group and attend meetings. 4
13. Any Other Business With regard to Item 8. On the last Agenda/Minutes JO was sending the link to the Cancer Care Wolverhampton site round to the group. Within this site there was a link to the PACT Group. DR said today (11 th June) that he would see that this had been done. This would also be an item on the Agenda for the next meeting in July as a follow up. RC was keen to link in with the issue of future funding of PACT and he had produced a document Trying to obtain future Funding which was handed round. He went through the sheet which ran from the 20 January 2014, listing all the meetings/events he had attended since then where this matter had been raised and discussed. 14. Date of the next Meeting Wednesday, 16 July 2014 at 10.00 am at Action for Independence 5