North East Essex Cancer Services User Group Minutes of the meeting on 16 th April 2012 held at the Training Rooms South, Colchester General Hospital Those present: Ken Aldred (KA) Apologies: Brian Liversidge Linda McFadden (LM) Steve Walters Philip Marlow-Mann (PMM) Jacqui Flynn Pat Marlow-Mann (PTM) Brenda Harvey David Nichols (DN) Brenda Russell Anna Wordley (AW) Michael Scanes Rachael West (RW) Donna Booton Maurice Newbolt (MN) John Crisp (JC) 1. Welcome and introductions KA welcomed Shirley Connolly, Brenda Gray and Alison Ridge from the NE Essex NHS Continuing Healthcare team. As BR and MS could not attend, PMM chaired the meeting. 2. Continuing Healthcare Alison, Assessment team manager, explained that her team assess hospital patients for their care needs prior to discharge, either home or to a nursing home. They use an assessment tool (checklist) which looks at various criteria to decide on the appropriate action. The criteria for Continuing Healthcare (care funded by the NHS) is that the patient has a rapidly deteriorating condition and a limited prognosis, although no finite time period is set. Continuing Healthcare (CHC) will discuss the patient s preferred place of care, prognosis, equipment needs etc. Shirley s team take all referrals from the Assessment team and commission an appropriate care package for each patient. This may be arranging for care at home or admittance to a nursing home meeting patient s preferences wherever possible. If hospital patients deteriorate very rapidly discharge decisions may have to be reassessed or even cancelled. Such decisions would usually include the family but the desire is to avoid, at all costs, patients dying in the ambulance following discharge. In the last 3mths, 42 out of 54 hospital patient with a preference to cared for at home were discharged and 28 out of 35 patients with a preference for nursing home care were discharged. CHC is reviewed after 3 mths and, if the patient s condition has stabilised or even improved, a decision is made by a PCT panel on whether to continue or move the patient to social care (funded by CBC or the patient).
3. Previous Minutes The minutes of the meeting of 12 th March 2012 were agreed. 4. Matters Arising RW pointed out that speakers for most of the 2012 meetings have now been arranged. 5. User Group Composition KA reminded the group that Brian has said he intends to stand down and a volunteer to take on the role of Chair-person is needed. 6. Publicity, Information and Education 6a. NEECSUG Web site KA received an email from JF stating that several of the changes suggested at the last meeting had been completed. The website (http://neecs.website-design-cambridge.com) can be amended by group members JF s instructions are: As I stated in an earlier email we all have access to the site so any member of the group can make changes. To edit text, just mouse-over the module and a pop-up appears with the word Settings. Click those to open the editor. I suggest you email the group members if you update the site so we don t trip over each other. Unfortunately MS was not present to demo the new ECN website as the content of the NEECSUG site depends to a large extent on what the network site contains. 6b. Portable PA System MN gave a demonstration of the microphone and amplifier. If support groups would like to borrow the equipment they should contact MN. 7. Prevention, Early Diagnosis and Pre-treatment 7a. Two week letter An email from MS states: This has been discussed at the NAEDI group which is attended by Linda Mahon-Daly. Apparently GPs in NE Essex will not use the letter because it includes the word CANCER. If we remove this word then they would use it! I thought the letter was designed to make the patient aware that they are being referred because the GP suspects cancer. A letter that does not include the word CANCER means that the patient is still not aware of the possibility and therefore does not have the incentive to attend the clinic. When they do attend and they discover that it is a cancer clinic this comes as a shock.
There is another document that has been used infrequently in the South but is a little more long winded. There is no objection to the word cancer in Mid and South. The group this was a ridiculous reason for not using the letter. It was agreed that KA would draft a letter from the group to LM-D which she could pass on to GPs. Action: KA 7b. NAEDI AW said the new Bowel Cancer awareness campaign is now running. The Lung Cancer campaign starts in May. 8. Better Treatment 8a. Radiotherapy LM showed the architects plans for the new centre to the group. It will be located between the main hospital building and the Gainsborough Wing. It includes bunkers fro 5 Linacs with space reserved for a sixth if needed in the future. The waiting area overlooks a large open courtyard and includes space for an information centre. She reported that all current radiotherapy staff are delighted with the plans. 8b. Psychological support Level 3 Psychological Support AW has had a meeting with Michelle Bath and the bid is now in the final stages of preparation. She asked the group if they would provide a letter supporting the bid. KA to draft. Action: KA 8c.Information Prescriptions Donna is now back at work and will be meeting with Debbie Farthing, Info Centre Manager, to discuss progress. 9. Post treatment The St Helena Hospice User Group met on 14 th April and finalised the large print version of the Patient Information Guide. This has been piloted with some patients with a visual impairment but feedback from real use is awaited before any other leaflets are produced. KA agreed he would produce a short paper on the approach taken so other groups can benefit from the experience gained. Action: KA The group also completed a review of the Distance Visitors Guide a collection of information useful to visitors who are not local to Colchester. The hospice teams have produced a first draft of a Symptom Management book, aimed at assisting patients and carers to self-help and thus can more control of their care. The User Group suggested several changes but the overall view was very positive. The book would be very useful at time of diagnosis so, once it has been further refined, KA will ask that copies be sent to this group for comment.
10. Meetings 10a. Lymphoedema Event This took place on 23 rd March and was a successful and well attended event. Several practice nurses and care home staff attended, along with patients and carers but, regrettably, no GPs. Several patients spoke about the impact of lymphoedema on their lifestyle and how limiting it could be. The surgical treatment available at the plastic surgery team at Broomfield Hospital was gruesome yet not very effective. It is hoped that this will become an annual event with ideas for taking it as a travelling roadshow to GP surgeries. 10b. ECN Partnership Meeting 28/3 Radiotherapy - A summary of the issues raised at the various 2011 public consultations was distributed to help the user representatives on the work groups. Info Centres Good progress is being made with the proposals for implementing Information Centres at Southend and Broonfield Hospitals. Southend s will be in a new, purpose-built building whereas Broomfields will be a pd in an existing building similar to Colchester s. Mergers Preliminary discussions about merging the Essex Cancer Network and the Essex Cardiac & Stroke Network have taken place and representatives from the Cardiac & Stroke Network attended this meeting. More detailed discussions are now scheduled. 10c. NEECCG MN attended the NEECCG (Clinical Commissioning Group) Public & Patient Forum meeting. Tendring CVS gave a presentation about the courses they run, which are available to everyone (unless you have a degree). Courses include relevant topics such as: chairing meetings, being assertive in meetings, managing group finances etc. NEECCG are seeking volunteers to stand for election to the Health Forum Committee. If interested you can download nomination papers from: www.neessexccg.nhs.uk/forums.html 11. Future meetings The group was reminded about the Survivorship Conference on 16 th May. Places are limited so please register directly with tara.large@nhs.net. Please let KA know if you have registered as it may be possible to share transport to the venue. 12. AOB LM advised that the NELS Support Group have produced a tri-fold leaflet about their services. It will be launched at their AGM on 25 th April at St Helena Hospice (Joan Tomkins Centre).
RW said that Sally Thorpe will come along to talk to the group about palliative care on 11 th June. She reminded KA about finding someone from St Helena Hospice to talk on 12 th November KA was asked to attach a copy of Debbie Farthing s Annual Info Centre report to the minutes. Note: copy of this report is not currently available and will be sent separately. 13. Future Meetings 14 th May Anna Wordley GI Cancers 11 th June Sally Thorpe Palliative Care 9 th July Sonia Tankard Radiotherapy update 10 th September Nicki Goodwin End of Life Care Facilitator 8 th October Mark Thompson/Hilary Platts - Chaplaincy 12 th November Speaker TBS St Helena Hospice 10 th December Sally Philpott - Head & Neck CNS 14 th January Lesley Pennell Family History Advanced Nurse Specialist