Essex Cancer Network Partnership. Tuesday, 31 st January am-1.00pm at Swift House, Middle & Annexe M I N U T E S

Transcription

1 Essex Cancer Network Partnership Tuesday, 31 st January am-1.00pm at Swift House, Middle & Annexe Present M I N U T E S Ken Aldred (Chair) KA St Helena Hospice Partnership Michael Scanes MS Partnership Facilitator, ECN Sue Maughn SM Network Director, ECN Roger Bassett RB Chair Southend User Group Janet Wagstaff JW Vice Chair Southend User Group Norma McIntyre NMc Service User Facilitator, Farleigh Hospice Kate Patience KP Macmillan AHP Lead, ECN Carol O Leary COL Nurse Director, ECN Philip Marlow-Mann PMM Colchester User Group Bob Hackett BH Basildon User Group Babette Knott BK Basildon User Group Paul Foulger PF Mid Essex User Group Shirley Ricketts SR St Helena User Group Linda McFadden LM North East Essex Cancer Support Group 1. Welcome and Introductions 2 Apologies KA welcomed all and, in particular, the new members and introductions were made. MS gave an update on how this Partnership Group works and RB gave an explanation as to what it was like being a member of the group. He handed a table showing the structure within the Cancer Network and how this group links in. Brian Liversidge, Vic Murray 3. Previous Minutes 29 th November 2011 The following amendments were made to the minutes:- Page 3 Correction to spelling of Babette name, should be Knott, not Knox; Page 3 Initials for Janet should be JW, not JB; Page should read no equipment is available, not no help is available. Following these alterations, the minutes were agreed as a true record of proceedings. 4. Matters Arising From the previous minutes, KA had written a letter to the Peer Review Team expressing the group s disappointment at the report. At this meeting he was hoping to show a copy of this letter to the group, together with a copy of their response, but no reply had yet been received. SM suggested forwarding the letter directly to Ruth Bridgeman and it was agreed this would be done. (Note: the letter was forwarded to Ruth B and a reply received. KA has responded to this and all correspondence ed to group members. Ruth will be attending the meeting on May 22 nd to discuss peer review). KA confirmed that the Work programme was still being worked on and will be discussed further at the next meeting. Page 1 of 5

2 COL advised the group that with regard to the 1:1 Macmillan Support Pilot, Liz Towers (Macmillan GP) is keen to be involved and COL met up with Michelle Bath and Liz to discuss this. Liz is looking at whether one of her practice nurses could maybe adopt this role. Update to follow. 5. Items to be raised under AOB 2 items to be raised by Sally Sanger, 1 from MS and one from KA. Patient Satisfaction Survey MS raised an issue whereby a CNS had expressed concern to him as patients in her clinic were being approached without consulting her and, in some cases, where it was not appropriate to do so. KA and MS felt this would be a good time to put together some basic ground rules to avoid this type of situation happening again and a copy of these were handed out to the group for consideration. The group were asked if they had any comments on these points to feed-back to MS as soon as possible. Once this has been agreed by this group, KA will pass a copy to the Project Manager at St Helena for their User Group to give their views. ALL 6. Radiotherapy Implementation Group User Involvement 7. Updates SM gave an update. The Cancer Network had had to make recommendations on the expansion of radiotherapy services across Essex and she handed out a document to the group to show what the workstreams were for this implementation. The Patient Experience and Information Work-stream has been passed to this group and with effect from the next meeting, it will be a standing item and the group will be in a position to discuss all the previous issues expressed from patients all over the Network. Issues discussed by this group would then be fedback to the Radiotherapy User Group, which LM currently sits on. KA felt that another representative from this group would be a good idea and MS asked PF to sit on the Workforce side, which he agreed. MS also advised that Colchester would like a couple of Mid Essex patients to join their Colchester Capital Project scheme and asked if PF could take this suggestion back to his User Group for any possible candidates to be identified. 7.1 Locality Updates MS informed the group that written summary had been received from NMc and PMM. SOUTHEND RB gave an update on the Cancer Information Centre at Southend. 3 meetings were arranged with Macmillan up until the end of March as feasibility studies need to be done. Macmillan will then say how much it will cost and, hopefully, this will be within what monies they have allocated. Mark Angus from Mid Essex has asked RB to contact him to share the processes Southend had gone through to set this up. BASILDON BK gave an update. The information space was working well and the number of contacts had increased by 40/45%and they were seeing around 140 per month. The space is manned most days between 9am- 12noon and 2pm-4pm by CNS s, Macmillan reps and volunteers from St Lukes. The formal launch has still to take place. A laptop is now on site and this is assumed to be up and running. A slight problem at Basildon is recruitment and lots of people were now no longer attending meetings. KA confirmed that if support from this group would help, it would be there, as many groups had had problems with recruitment in the past. Page 2 of 5

3 MEHT PF confirmed that a new Chair and Vic Chair had been appointed. The patient survey is in progress but it was felt that patients do actually like completing surveys on a 1:1 basis so they will be looking at how to get people CRB checked etc to do this. Regarding the Information Centre, they have been assured it will be for cancer only. They have been looking at chemotherapy requirements, which are very stretched at MEHT. PF advised that with regard to radiotherapy, they are still trying to negotiate having 3 spaces at Colchester Hospital specifically for Mid Essex patients to use. SM said she would speak to Sue Barnett to see if this could be hurried on a bit. COLCHESTER KA had received a report from Colchester, but PMM gave a brief update. He explained to the group that the Chair, Brian Liversidge, was having a further bought of chemotherapy so would be absent from meetings for a while. The group sent best wishes to Brian. PMM confirmed that they were developing their own website and work on this was still progressing. The site will mainly provide links to other websites, including to the new ECN Website. PMM also advised the group that, to complement attempts recruiting new members, they are looking to develop e-members, whereby people do not necessarily attend meetings, but are happy to contribute to various things that are happening, read documents etc. The group thought this was a good idea and maybe something other groups may be interested in setting up. PMM told the group that the Work-plan was being developed, primarily adapted from a list Brian had prepared on achievements the group had made. He suggested that maybe all groups should produce an Annual Report, which could then be compiled together to make this groups Annual Report. MS confirmed that this was a requirement now and would assist him in the final version of the report. KA asked to be kept up to date on the progress with developing e-members. FARLEIGH HOSPICE NMc reminded the group of the list she had prepared showing what Service User work was being carried out at Farleigh Hospice. (The group had received this by prior to the meeting). She also agreed with BK s earlier comments in that it was very difficult to carry out a patient survey for inpatients as some were so ill it was not appropriate. Discussion took place as to various ways of carrying out patient surveys in different circumstances and KA suggested putting this item on the agenda for the next meeting to explore the groups views and perhaps come up with a collective approach, which is best for the patient. KA BH advised that he is meeting with Roger Crellin next week to run through the councillor s approach. ST HELENA HOSPICE A meeting had taken place last week, which had been attended by an Occupational Therapist from the hospice who talked about their role, which was interesting. Their patient survey has been completed, which KA presented to his group. It was positively received, although the few issues which came out were put into an Action Plan and put to the Hospice Board. Their new Patient Information Guide has been completed. KA told the group that he had been approached by people from other hospices who are trying to start up their own user groups, which is a very positive thing as it means that user groups are being recognised as a good thing and beneficial to have around. Page 3 of 5

4 7.2 Palliative Care COL thanked BH for agreeing to join the Psychological Support Group as a user representative. COL advised the group that the End of Life GP Facilitator Project was starting and Karen Spurgeon is out and about meeting GP s in the project site of SW Essex to talk about End of Life care. COL said that the Specialist Palliative Care measures have now come out and will be out for consultation until the end of February and said that a lot of work and changes will be taking place. COL and Catherine O Doherty (Palliative Care Consultant at Basildon) will be having a whole day meeting to come up with an Action Plan for what needs to be done. She will provide feedback on this to the group at the next meeting. KP gave an update on the Rehabilitation Board, which she chairs, and advised that a couple of concerns had recently been taken to the ECN Commissioning Board. However, something that has been raised by Occupational Therapists is around providing equipment for End of Life care KP gave an update on the Rehabilitation Board, which she chairs, and advised that a couple of concerns had recently been taken to the ECN Commissioning Board. The first issue was around communication aids which were discussed at the last meeting. The second issue was around equipment provision at the end of life, as Occupational Therapists are reporting an increasing difficulty accessing equipment for people who have a prognosis of less than three months due to the cost versus potential usage of equipment. This does not include beds and hoists, but does include more social equipment such as wheelchair ramps, rails, chairs etc which can have a huge impact on quality of life and social integration. The Commissioning Group asked for evidence which will be collected via the Rehabilitation Board. LM is currently doing some work for the Mid Essex Commissioners regarding equipment and agreed to work with KP to look into this situation. KP/LM 7.3 NSSG/NCCG MS has an updated list of all members, which will be circulated with the minutes. One definite new recruit has agreed to join the Lung NSSG, with another possibility as well. The Urology NSSG requires new user reps and there are a few other gaps, which can be seen on the list. MS asked if this group was aware of anyone who may be interested in joining could they let him know. 7.4 ECN Web Site SM updated the group on the progress of the new ECN Web Site. Training had been received by the ECN Team, who have been given sections to upload, with the launch date being in April. Full access is available to this group, who will also have their own page. Each locality group will also have their page to show agendas, confirmed minutes etc. SM agreed to give a short demonstration to this group at the next meeting. MS said that there may be a slight problem with people s names being picked up through a google search and it may be necessary for names on minutes to become more anonymous and this will be looked into more at a later date. SM 7.5 ECN Board KA gave an update to the group. He showed the Improving Outcome Guidelines which SM provides to the Board on the current status on all the different cancer sites. These guidelines are a particular good sign of all the hard work done by SM and ECN Team as there were no outstanding red indicators. This meant that all actions required had either been done or were in the process of being done. KA congratulated the team. At the Board, SM had also presented the Atlas of Variation, which shows statistics from around England where variations are found. KA highlighted a few interesting statistics from this. Page 4 of 5

5 8. Election of Officials 9. Survivorship MS confirmed that KA and RB have agreed to remain as Chair and Vice Chair of this group for 1 more year, but want to move on then. There is a vacancy for the second Vice Chair following MS putting forward PF and agreement received; PF was elected as second Vice Chair of this group. 9.1 Conference arrangements KP gave the background to the Survivorship Pathway and plans to make improvements across the Network. She informed the group of a conference that she was arranging on 16 th May at Essex County Cricket Club. The event is aimed at being a little different than usual in that it will centre on body imaging, exercise, continence and sexuality. She is also hoping to get some carer support. An agenda for this event will be sent out once the speakers have been confirmed and all are welcome to attend. It will probably be titled Living with and beyond cancer. Following prompting from MS, PF offered to speak at the event on sexuality. Full details to follow. KP/PF 10. AOB There was an item to be brought up by Sally Sanger, but this was deferred to next meeting. KA informed the group of a topic that had been brought up at Board about anal cancer and reconstructive surgery. This is an extremely rare type of cancer with a maximum of around 14 patients a year. At present patients are treated at Southend and Colchester, but in order to be IOG compliant, patients should have surgery in 1 central location. This group was specifically asked by the Board for their views on this and SM is working with the Site Specific Group to provide a brief summary document. When this is available it will be ed to the group to be discussed with their local groups. Feedback should then be gathered and forwarded to SM to be taken back to Board. MS gave an update on Health watch, which is the new body taking over from Links. There is a consultation on the Dept. of Health website for people to go on and make comment if they wish and also information on how to become a member. MS will forward the link to the group. MS 11. Dates for meetings in 2012 All 10.00am-12.00noon 28 th March Kestrel House Board Room (please note change of date) 22 nd May Swift House Middle & Annexe 31 st July Swift House Middle & Annexe 25 th September Kestrel House Board Room 27 th November Kestrel House Board Room Page 5 of 5