MID ESSEX CANCER SERVICES USER GROUP
Minutes of aMeeting held at Kestrel House
on Monday 5th March 2012 at 3pm
Present:Paul Foulger (PF) – Chair
James West (JW)
Anna Mead (AM)
John Lancaster (JL)
Vic Murray (VM)
Carol O’Leary (CO) – ECN Nurse Director
Michael Scanes (MS) – ECN User Facilitator
Clive Blanchard (CB) – Secretary
Part:
Karen Travis (KT)
Clive King (CK)
Allison Tibbatts (AT)
Graham Hart (GrH)
Gwyneth Hart (GwH) / Apologies received from:
Matt Riddleston (MR)
Lisa Villiers (LV)
Teresa Ghoneim (TG)
1
1.1
1.2
1.3 / WELCOME
PF welcomed all to the meeting and reported interest in the Group from Carol Hine, who had identified the Group’s existence from an old poster in her GP’s surgery. CB reported interest from two patients, Jean Bacon and June Mays following publication of CB’s letter in the Weekly News, purpose of which was to raise awareness.
CB reported that Philip Clarke (PC) has withdrawn from the Group for the time being due to the costs involved in travelling from his home, a round trip of 50 miles. MS advised attendees that it may be possible to claim expenses and agreed to circulate the relevant Policy document.
Members were reminded that this was the first meeting since the Extraordinary General Meeting on 16th January, the February meeting cancelled due to inclement weather. A Communication Note had been circulated by CB to bring everyone up to date, this will be repeated as required. / MS
2 / MINUTES OF THE MEETING HELD ON 5TH DECEMBER 2011
The Minutes were agreed as a true record of proceedings at the meeting.
3
3.1
3.2
3.3 / MINUTES OF THE EXTRAORDINARY GENERAL MEETING HELD ON 16th JANUARY 2012
CB reported oneamendment, under Minute 5.3, the addition of paragraph as follows:
JW offered to be Mid Essex representation on the Head & Neck NSSG, run by Jonathan Philpot (Head & Neck Surgeon, Southend & Broomfield). This will be arranged by Michael Scanes. This item has been actioned.
The Minutes were agreed as a true record of proceedings at the meeting.
Referring to Minute 4.3, AM asked if the “Jargon Buster” could be circulated. / MS
4 / PATIENT INFORMATION LEAFLET & POSTER
MS reported that the leaflets had been sent to all GP surgeries (approx 30 in total) in Mid Essex, with a covering, explanatory letter from CB. However due to an oversight the changes requested at the meeting held on 5th December were not made before going to print. AM will review the leaflet and liaise with MS, who will arrange reprint in order that any future circulation will be of an information leaflet comprising up to date details. New (re-print) leaflets will be made available by 16th March for circulation at the Mid Essex Hospitals Trust (MEHT) Cancer Strategy Workshop. / AM/MS
5 / PATIENT INFORMATION CENTRE
CB reported that MR is hopeful of making a start on the business case in the next few weeks, in proposal form which will be submitted initially to the MEHT Cancer Services Management Board. Members recognised the pressures on MR’s time; CB agreed to contact MR to offer assistance again. / CB
6
6.1
6.2 / MECSUG INFORMATION BOOKS IN MEHT ONCOLGY DEPTS
KT reported she is reviewing content in liaison with CB; content is likely to include base information about the Group’s aims, objectives, current projects, etc., plus Terms of Reference, latest agreed Minutes and contacts.
It was agreed five copies be made available, two in Chemotherapy, one each in Breast and Urology outpatient departments and one in the Clinical Research Trials area. / KT
7 / MEHT PATIENT INFORMATION BOOKS
MS reported that he has begun to see Clinical Nurse Specialists at MEHT although the book needs to be checked for updating. / VM
8
8.1
8.2
8.3
8.4
8.5 / PATIENT SURVEY
JL presented a slideshow illustrating the analysis of a patient survey conducted in Chemotherapy Outpatients Dept during a three-weeks period in January. 250 surveys were circulated with 112 returned, upon which the analysis was based. Overall there was a positive response for patients although there are areas of concern.
The results will be presented to attendees at the MEHT Cancer Strategy Workshop on 16th March; due to time restrictions on that day, it was agreed the detail should be omitted, with emphasis on the first and last few slides.
CB queried how the analysis and findings of the survey may be circulated to members; it was agreed JL should take counsel from Helen Clark in MEHT’s Audit Dept. CB said he hoped that there would be no restriction on publication/circulation of the analysis to members.
As reported in the Communications Note circulated on 9th February, the Essex Cancer Network (ECN) Partnership Group agreed a draft Protocol should be prepared to cover procedures and processes involved in conducting Patient Surveys, in particular those conducted face-to-face. CB circulated the draft to MR, LV and Mark Angus at MEHT, MR responding with minor amendments. Agreed this be forwarded to MS and this item included on the Agenda for the meeting on 2nd April.
CB reported he has an electronic copy of the Care Quality Commission’s National Outpatients’ Survey conducted in 2011; this specifically relates to MEHT’s performance and position against other Trusts, covering all outpatients’ departments, not oncology in isolation. If anyone requires copy, please contact CB. / JL
JL
CB
ALL
9
9.1
9.2
9.3 / RADIOTHERAPY UPDATE
Car Parking for Mid Essex Radiotherapy Patients at Essex County Hospital (ECH)
CB referred to the Communication Note circulated on 9th February which included a file note of his and JW’s meeting on 7th February with Wendy Smith (WS) (Mid Essex PCT Director of Communications) and Nick Chatten (NC), Projects Director at Colchester Hospitals Trust. No response has been received to CB’s follow-up emails to WS and NC since 7th February and therefore it appears another four weeks has passed without any progress. CB expressed his disappointment with, and was critical of, lack of progress in a subject which was initiated by Sheila Bremner (SB) (Chief Executive, Mid Essex PCT & Chair, ECN) on 16th September 2011, a period of six months during which actions arising from meetings remained outstanding and emails unanswered until often weeks had passed. CB stated he was basing his comments upon a summary of email, correspondence and contemporaneous notes made of telephone calls. CB to maintain contact with WS and NC in an effort to progress this matter.
Radiotherapy Expansion Project at Colchester General Hospital
CB explained that he and JW were awaiting plans which NC had undertaken to send to them at the meeting on 7th February. CB and JW expressed the view that Mid Essex patient input to this project should have been instigated in September 2011 when the project team was being pulled together, at a time when they, along with JL and KT were discussing patient input with WS and SB. Substantial planning progress has subsequently been made by the Project team, including finalising plans to be submitted to Colchester Borough Council for full planning application by 21st March. CB and JW considered any Mid Essex patient input would now be about the “softer” issues associated with the expansion programme and therefore appears to be lip service to patient input and thus a “box-ticking” exercise on the part of the ECN.
MS advised that, notwithstanding CB and JW’s comments, Andrew Tollick has been appointed to manage the project and is seeking two Mid Essex patient representatives to work with him and the other sole patient representative on that group. After discussion, CB and JW agreed to attend the next meeting, date permitting. MS will contact Mr Tollick to ascertain meeting date(s).
PF reported that he had received a letter from Sheila Bremner on the subject of the project structure, specifically relating to adequate input from Mid Essex users; a reply was sent on 12th February expressing some concerns and requesting clarity in respect of Terms of Reference of the Patient Experience and Information workstream and a reply is awaited.
CO expressed her concern regarding critical comment of her colleagues within the ECN and felt they were under attack, whilst she was in no position to defend them; radiotherapy was but one of a multitude of responsibilities and many people within the PCT and ECN are experiencing a period of substantial and worrying change. CO felt a “them and us” situation was developing. CB agreed a “them and us” situation has developed in this matterdue to the continued broken promises made by officers of the PCT and ECN. JW commented that when the decision was made to expand radiotherapy in Essex, a number of promises were made by the Mid Essex PCT about improvements to access, travel and personalised transport – none of which have come to fruition; the exclusion of Mid Essex patients at the beginning of the expansion project only served to increase members’ cynicism. AT expressed concern that whilst this Group is pushing for improvements for services for cancer patients, unnecessary delays are unacceptable and there is no room for sensitivities whilst patients are dying.
Radiotherapy Treatment
JW reported Colchester will begin treatment of their first IMRT patient on Mon 26th March. They are currently starting the planning process and will be undertaking this via the ART DECO[i] trial. Once they have confirmed this start date they will be in touch with their PR team to make a public announcement. With respect to the new build, the specifications for the new LINACS have been drawn up and all will have IGRT capability which will enable them to develop SBRT in the future. / CB
JW/CB
MS
10
10.1
10.2 / MEHT CANCER SERVICES MANAGEMENT BOARD (MEHT CMB)
Mark Angus (MA) has requested representation from the Group to attend the Strategy Workshop on 16th March at Channels Golf Club. There will be five workshops and ideally a representative from the Group on each. PF will advise MA that attendees will be PF, CB, AT, JL, VM and CK.
The Group’s 15 minutes presentation will comprise two parts; firstly AT will present an introduction to explain this Groups aims, objectives and current projects etc., then JL will present the summary analysis of the Patients’ Survey. / PF
AT/JL
11
11.1
11.2
11.3 / COMMUNICATIONS
CB reported that the sub-group met immediately before this meeting and AM has agreed to oversee its activities. With PC withdrawing from the Group the sub-group was effectively one member down on the ideal number, however GrH offered his services. CB to circulate sub-group contact details with notes from the sub-group meeting.
CB advised of the following key points arising from the sub-group meeting:
- Patient Information Leaflets – see minute 4 above
- Media – Essex Chronicle’s (EC) Editor and Deputy Editor have offered to highlight the Group’s activities in the paper; meeting to be arranged with an EC reporter.
- MEHT Website – meeting to be arranged with MEHT’s e-Communications Manager w/c 12th March regarding website content for the Group.
- Posters – draft version to be slightly amended by JW
- Quarterly Newsletter – agreed to be held in abeyance until Summer 2012
- Publicity Stand in High Chelmer – costs, availability to be investigated along with feasibility of acquiring funding.
CB
GrH
12
12.1
12.2 / ESSEX CANCER NETWORK (ECN)
MS advised that patient representation on Network Cross Cutting (NCCG) and Site Specific (NSSG) Groups was improving, with four Mid Essex representatives on the Lung group. However there were still vacancies and areas of weakness in terms of patient representation, in particular Brain & Central Nervous System NSSG, and Children/Young persons NCCG.
MS confirmed the ECN website will be live on 2nd April 2012.
13
13.1
13.2
13.3 / SUPPORT GROUPS
The Group’s intention is to raise awareness of our activities within existing patient support groups at MEHT. To that end, details have been received from MR of patient groups in Breast, Prostate, Head and Neck, Neuro and Stoma.
JW represents Head and Neck at MECSUG and will keep that patient group advised of our activities.
MECSUG will seek to present to the other patient groups. / JW
PF
14 / MECSUG LETTERHEAD
It was agreed at the EGM on 16th January that the Group has its own letterhead for more formal correspondence. Following discussion it was agreed the letterhead be kept clear and simple and in the same format as the heading of these Minutes. / CB
15
15.1 / ANY OTHER BUSINESS
CO reported that a grant has been received from the Strategic Health Authority for £210,000 over a period of two years to fund Karen Spurgeon’s work in End of Life Education. A key element of that work will involve discussions and liaison with GPs. As an aside to this discussion, CO advised that GPs must retain a register of cancer patients and an End of Life Register, for which they receive funding under the QUAFF points scheme.
16 / DATE OF NEXT MEETING
Monday 2nd April 2012 at 5.30pm in the Medical Academic Unit, Broomfield Hospital. Guest speaker will be Dr Liz Towers.
There being no further business, the meeting closed at 5.30pm.
1
[i]
ART DECO: A phase III multi-centre randomised controlled trial to determine the potential of dose escalated IMRT to improve locoregional failure free rate (LRFFR) and laryngeal preservation in patients with locally advanced laryngeal and hypopharyngeal cancers, without increasing the incidence of severe acute and late toxicities to unacceptable levels.