MINUTES Wednesday November 13th, 2015
Meeting held at BICS Training Room, Oak House, MKUFT, 12:30 – 14:00 hrs
Ajona Twist Ashfield PPG, Observer
Angela Sheldrick Breast re-design Project Manager
Barbara Nash Ashfield PPG, Observer
Bronwen Webster User rep
Carol Hewett User rep
Claire Crick User rep
Chrissie Gevis Senior R&D Administrator
David Buckley User rep
Deb James Guest, Bowel Cancer speaker
Elizabeth Bradley User rep
Graham Anderson User rep
Jaff Newton MKCPP Secretary, User rep
Jean Mattinsley User rep – Healthwatch rep
Jeannie Righton User rep
Jenny Abbot User rep
Jen Davies Cancer Manager
Kate Iseton Lymphodema Service Willen Hospice
Kim Bowles Macmillan Development Manager
Lisa Lynch ANP Breast
Linda Wilson User rep
Richard Freeman User rep
Rose Coppard User rep
Sally Burnie Head of Cancer Services
Sally Levette Willen Hospice
Sam Timmins Macmillan Cancer Information & Support Manager
Sarah Crane Revd. Team Chaplain
Steph McPherson User rep
Sue Fitzgerald Gynae ANP
Suzan St Maur MKCPP Chair, User rep
Dawn Allen The Henry Allen Trust, User rep
Gail Spooner User rep
Graham Youngman Asplands PPG, User rep
Kim Weston Bereavement Officer
Lorraine Mir User rep
Mr Kavidsan Lung Consultant
Pam Steer UGI ANP
Ray McPherson User rep
Sabina Dawson User rep
Wendy Black Lung ANP
Future dates for your diary:
2016 NEW TIME 12.30 – 2.30 All being held in the BICS TRAINING ROOM, OAK HOUSE
March Tue 8th
May Wed 11th
July Tue 12th
Sept Wed 14th
Nov Tue 8th
Item #1 – Welcome
1.1 Suze welcomed everyone, especially our guests Ajona Twist, Barbara Nash and Deb James.
These were noted.
These were agreed and signed by the Chair.
1.5 Matters Arising
There were no matters arising that were not on the agenda.
1.6 Action Points
Item #2 – Guest speaker
Deb James gave an inspiring talk about her own experience of bowel cancer and the problems she encountered in the workplace and her determination to help others in a similar situation. She set up her own consultancy to educate businesses on how to accommodate employees with complex conditions and fatigue so that they can manage both their illness and recovery with the knowledge that they have the stability of a job. She has a website and business card for those interested.
Suze commented that it was often small or new businesses that have to be made aware that there is a need for balance and that with the right communication there would be benefits for both.
Angela said that she would like to work with Deb to use her experience in the new post she was embarking on.
Kim B said that in Berkshire they set up “work-based mentors” in and out of work to help with the HR process. She would need money and resources to set this up in Buckinghamshire. She said employment is a massive issue that the Macmillan helpline deals with. There needs to be a “framework for cancer management” for the patient, family and carers that covers attendance, communication and ethos. She will keep in touch with Angela.
An interesting discussion followed. Graham A said he will use this information as a trigger for the hospital HR department wellbeing agenda.
Item #3 – MKUHFT – Sally B. and Jen
3.1 The Cancer Build will house the chemotherapy service and inpatient ward with a link bridge into the main hospital for 2017/18. The radiotherapy unit will be a separate project shared with Oxford but provision will be made for a shared reception so that in the future vision it will appear as one. The process is now in place with scheduled meetings involving key stakeholders. Patient representatives will be wanted on steering groups to look at operational pathways. Meanwhile it is business as usual although increasing demands on the service makes capacity an issue.
3.2 National Cancer Patient Survey. Since the last results a lot of work has been done, including the Patient Journal. The questions on the survey have been “tweaked.” 600 inpatients and day patients will be sent the survey during November and December and then the results will be published in April. Sally B. said that there will still be challenges but hopefully there will be more awareness and engagement.
3.3 Quality in Care Awards
Congratulations go to:- Sam Timmins – patients’ choice
Macmillan Team, Ward 22 and the Mortuary Team.
Suze told the group that Sally B. had suggested that we enter MKCPP for the QiC Oncology 2016 Awards, Patient Experience category.
3.4 Nursing posts and business cases. Interviews are in progress for a head & neck ANP, and a Haematology ANP. There is a lack of some speciality posts, e.g. Chemotherapy nurses. Internal applications create spaces lower down for younger band 5/6 staff who can then be trained up.
3.5 Cancer Steering Group including the Community and TVSCN has been set up, chaired by Nessan Carson. They will follow NICE Guidelines, have joint working and address awareness, screening and prevention. Patient representatives will also attend.
3.6 Annual meetings will be held in Jan/Feb 2016 and the Internal Validations will follow in March/May. The only external Peer Review is for CUP (Cancer of Unknown Primary) in May.
UGI/CUP 21/1/16 2-4
SKIN 28/1/16 2.30-4
GYNAE 25/1/16 2-4
PALLIATIVE CARE 20/1/16 10.00
Item #4 – Ashfield PPG members
Barbara said that they had hoped to have a more robust relationship with their practice, making use of the MKCPP website and Directory and share the GP perspective with us.
Item #5 – Working groups
5.1 Patient Feedback Project. Suze said the Patient Journal was to be launched for the second time on Friday 13th November and then for the next three Fridays. An alternative day will then be selected to meet another group of patients. It is then proposed to go on to specific wards when permission has been given by the ward matrons.
Jaff asked for volunteers.
- Sally B. to liaise with ward matrons.
- Jaff to draw up rotas.
5.2 Cancer Resources Directory. Suze said that the second edition was ready to be printed and that it would also be made available on the MKCPP website.
5.3 Environment audits Jaff said that PDU E-audit report would be distributed in December whether the Action Plan had been received or not.
Action – Jaff to follow up the PDU Action Plan and to set dates for more E-audits in the New Year.
Addendum – Joe Harrison thanked MKCPP for the report and said it was most helpful.
5.4 Courtyard garden – Jaff said that unfortunately Santander were unable to resource a gardening team this year, but Paul Jones said that he would continue to help in his own time. A patient’s son, Dean, has volunteered to help but is waiting for the completion of his forms. It was suggested that a notice is put up in the Mac Unit with dates for “group gardening” with the hope that we get some more volunteers.
Action – Jaff to sort in the New Year.
5.5 MKCPP documentation – Suze has produced a more general leaflet about MKCPP.
5.6 Public Liability Insurance – Richard will continue to monitor and inform.
5.7 Website – www.mkcpp.org – Suze will continue to monitor and update.
5.8 Information / Literature / Leaflets – Sabina will continue to monitor and update.
Item #6 Support Group and other updates
6.1 Bosom Pals – Next meetings are 1st December and 5th January 2016
6.2 Bladder Group – The “Pee-Wees” – Next meetings are still on hold for the time being but it is hoped to restart them in the New Year.
6.3 Prostate Group – MK-PCS – David said that some members of his group were in their first year after treatment and the question often asked was “what next” This led to discussion about living with and beyond cancer.
He also said that the group had visited the Medical Detection Dogs Centre and were told that they were testing for prostate, renal and bladder cancer plus other life threatening conditions.
Chrissie said that research comparisons between conventional tests and the dogs, the dogs are winning!
6.4 MK Supermoles – Skin Cancer Support group – Next meeting Saturday 21st November.
6.5 Willen Hospice – Sally L. said that there had been staff shortages in the community but they were now back to full strength.
6.6 Research – Chrissie said that research trials at the hospital were going well but that they need more nurses. Space was a constant issue so the research nurses are scattered over the campus with no base.
6.7 Carers MK – Ongoing
6.8 Chaplaincy service – Sarah said that the new lead chaplain was Philip Winn.
Suze said she hoped he would come to one of our meetings in the New Year.
6.9 LGFB – Sam said that 15 ladies attended the first session which was well received , the second session on 19th November was fully booked as were the other sessions up until April 2016. She said she would be continuing to take names. She is also planning a staff session for the New Year.
Sam also informed us that she had set up a General Cancer Support Group which is being held in the Eaglestone restaurant from 10.00 – 12.00 on a Thursday. They have already held two very successful sessions, the next is on 10th December and more are planned for the New Year there.
6.10 Macmillan – Kim said that she met with the local CCG and that we would be having a Macmillan sponsored GP in Milton Keynes in the New Year, who amongst other things will give master classes to help the communication between Primary and Secondary care.
Suze suggested that it perhaps was time for “Macmillan Local” to address Health and Wellbeing rather than from a central head office.
Kim said she would be getting an assistant to help her with all the new initiatives.
Item #7 – AOB
7.1 Suze said many thanks to Carol for donating a container of Quality Street, after she had she left the meeting early.
7.2 Suze suggested that at future Healthwatch Events the hospital (Macmillan Unit) and all the local cancer-related groups should have adjacent stands, so forming a “cancer cluster.” This year (2015) they were dispersed randomly around Middleton Hall.
7.3 Chrissie said that from the patient feedback she was looking at, the car-parking experience was of great concern with some patients waiting 40 – 50 minutes then being late for appointments or even missing them which was very stressful.
7.4 Suze wished everyone a very Happy Christmas and New Year.
The meeting closed at 14.15hrs.
Date of next meeting
Wed Jan 13th 2016
NEW TIME 12.30 – 2.30 All being held in the
BICS TRAINING ROOM, OAK HOUSE