Milton Keynes Cancer Patient Partnership

Tuesday 10th July 2017, 12:30 – 2.30

BICS Training Room, Oak House

MINUTES

Present:

Elizabeth Bradley                    User rep, Breast

Sally Burnie                             Head of Cancer Services

Jen Davies                              Cancer Manager

Geoff Saunders                       User rep, Lymphoma  – REMAP

Revd. Sarah Crane                 Team Chaplain

Jaff Newton                             MKCPP Secretary, User rep, Breast

Rose Coppard                        User rep, Lower GI &  volunteer – Mac Unit

Angela Sheldrick                     Breast re-design Project Manager

Suzan St Maur                        MKCPP Chair, User rep, Breast, Bladder, Carer

Linda Wilson                           User rep, Breast

Steph McPherson                   User rep, Breast & Ovarian

Amanda Naylor                       H&N ANP

Christine Cowap                     Macmillan Engagement Co-ordinator for MK and Bucks

Shaeen Dalvi                           Macmillan Partnership Lead for Bucks and MK

John Sorrell                             GP retired – Hanslope & District Cancer Wellbeing &Support Group

Ray McPherson                      User rep, Carer

Andrea Kingston                     GP retired – Hanslope & District Cancer Wellbeing & Support Group

Jeanette Wells                         Gynae ANP

Pamela Steer                          UGI CNS

Joanne Merritt                         Palliative care/ EoL Lead ANP

Bob Gould                               Red House PPG  Observer

Vanda Gould                            Red House PPG

Jo Bayne                                 Speaker – Sweet Charity

Simon Tipping                         Speaker – H&N cancer patient

Trevor Hutson                         Observer- Laryngeal cancer patient

Sally Hutson                            Observer – Carer

Vanessa Freeman Gwynn      Observer – Carer

Apologies:

Graham Anderson                   User rep,

Carol Hewett                           User rep, Upper GI

Jean Mattinsley                       User rep – Carer, Healthwatch rep

Barbara Saunders                  User Rep, Lymphoma

Claire Crick                             User rep, Breast

Kate Iseton                              Lymphodema nurse – Willen

Sam Timmins                         Macmillan Cancer Information & Support Manager

Carly Polti                                Lymphodema nurse – Willen

Paul Maclean                          CRUK Volunteer

Sally Leverett                          Willen

Kim Weston                            Bereavement Officer

Gail Spooner                           User rep, Breast, Lead LGFB

Sabina Dawson                      User rep, Carer

Sue Fitzgerald                         Gynae ANP

Jane Douglas                          Macmillan Mobile Information Lead

Alan Hastings                          Chair, PPG Whaddon Medical Centre

Alison Sandaver                      Lead oncology ANP

Future dates for your diary:
September Wednesday 13th – Eaglestone Restaurant Function Room 11.30 – 2.00
November Tuesday 14th – BICS Training Room, Oak House 12.30 – 2.30 AGM

Item #1 – Welcome

**Suze welcomed everyone, especially our guest speakers, Jo Bayne and Simon Tipping, and observers Vanessa, Bob, Vanda, Trevor and Sally. She said that unfortunately Chris Lewis, another speaker from Croydon had to abandon his journey at Euston because the lines were closed but he hoped to join us at the September meeting.

**Apologies

These were noted.

**Minutes

**Suze said that there had been a correction to the Addendum in point 7 in the final version of the minutes. After the correction the Minutes were agreed and signed by the Chair.

**Matters Arising

None

**Action Points

None

Item #2 –

Item #3 – MKUH – Sally/Jen

**Sally started with the good news that the local and national cancer targets had all been met and that we were the best improving Trust for Cancer Services in England, recognised in a letter from Jeremy Hunt to the Trust. She said that this was a shared recognition of patients and staff. What was key now was sustainability! There were congratulations and applause.

She said there was a full cancer team in place for August to spread the increasing workload and that the micro-management of data and tracking of patients to the 2020 standards from starting treatment to discharge, was in place.

She said that Jo Merritt was the lead for End of Life and Palliative Care and then explained that this referred to the last year of life and was an accurate model to recognise this group of patients and give them quality of care. A team would be coming from London to train all staff involved including working with GPs and Community Care.The launch will take place off site on 20th September.

The business case for the new Cancer Centre has been put back for 6 weeks to allow time for the new multi-storey car park to be built.

The public launch will take place later in the year.

Sally then went on to say that the East of England Cancer Alliance has a pot of money for “Recovery Packages” for the next financial year and that all patients are to have a recovery package as part of their Treatment pathway. The Alliance has requested that members of MKCPP are involved with the discussions that will take place.

Sally also mentioned that we are likely to be working with Bedford and L&G Hospitals according to STP plans, so the MKCPP has been noted as the strongest cancer patient/carer organisation within this grouping and will be leading the initiative across all three hospitals. It is to be hoped that the MKCPP can link with any similar groups from Bedford and L&G, especially the BCAP Bedford group with whom we have had links in the past.

**Jen said thank you for the MKCPP help on IV panels and said that good feedback had been sent to the National team; they will give their feedback in December. She said that the Service Improvement meetings will take place in December where the cancer teams make plans for the coming year.

**Suze said that before she introduced the speakers she would like to say that Vanessa, Richard’s wife had joined the meeting today to tell us that £2,500 had been donated at Richard’s funeral and that it was to be used as lasting memory to him in the new cancer building or garden. Ideas were discussed but it was suggested that Vanessa attend the workshop that the architect Toby would be arranging to discuss interior and exterior art to give inspiration to patients, carers and staff.

Item #4 – Guest speakers Jo Bayne and Simon Tipping

**Jo thanked us for inviting her to speak and said that her background was in retail, design and the value of marketing. She then moved into the digital world and set up her own business helping small charities. She started with a ‘not for profit’ mental health charity to help raise their profile. She listed the positives of telling personal stories to inform, inspire and educate: to have a professional image, communicate and network; to demonstrate how friends are involved, use social media to have a two-way conversation and listen to feedback. The ideas were endless but so relevant. She offered her contact details and said she would be pleased to talk and help about specifics.

**Suze said that would be really useful and offered to put the contact on the MKCPP website.

Discussion followed.

**Simon started by saying he was unsure about what to speak about, his art or his cancer so began by saying that he had worked in Community Art for 30yrs, mainly in schools and community groups, but eleven years ago at a routine visit to his dentist a lump in the back of his mouth was detected and he started on his cancer experience. GP to Surgery at NGH which involved not only the removal of the lump but reconstruction of his jaw with bone from his leg, followed by radiotherapy and then the long journey to recovery and how he coped with the immediate effects of  surgery. He stressed how little information there was at the time. Then in 2012 another lump was found on his lung and this was dealt with in Leicester. He now has regular check-ups and has only praise for his treatment. He said he now lives for each day, is more relaxed, lives on a narrowboat, works less and travels more.

Questions followed.

Item #5 – Working groups

**Cancer and Beyond 

Angela said that a meeting had taken place at the Whaddon Medical Centre with the Red House surgery and that support evenings in both surgeries were being planned for September and October.

**Cancer Patient Feedback

 Suze said that the new Journal was available and was being put into all diagnostic packs.

A date to relaunch in the Mac Unit to be arranged.

We are still waiting for the DBS checks to be arranged by Michaela.

**Cancer Resources Directory

Supplies will be in the Mac Unit. Please sign for the number of copies taken and where they are for. Suze will continue to monitor and update the online version as each change/addition arises.

**Courtyard garden

Jaff said that Santander were having another Community Day giving the Macmillan gardens some tlc. This is planned for Friday July 27^th, 2017. Anyone interested is more than welcome to join them to pull a few weeds and do some planting. Unfortunately Jaff said she had a prior commitment.

**Website – www.mkcpp.org

Suze continues to monitor and update. She said that she would post any new information/dates as requested rather than having to wait for a meeting.

The offer still stands from Suze if members want to learn how to use, update and add to the website.

**Environment audits

Jaff said that the Head & Neck Clinic area audit would take place on 8th August.

**Macmillan

 Chris Cowap, Macmillan Engagement lead, said that the new Support grants (£500 – £3,000) are being tested in our region. The application process is now more flexible, only two pages long and is much easier for local Macmillan staff to sign off. What is important is that the application should demonstrate the positive difference the grant would make. Hopefully there will be some uptake before the test phase expires in December.

Amanda, said that such a grant would be useful to relaunch a Head & Neck support group with the help of Macmillan.

**LGFB

Look Good Feel Better sessions  are held on the third Thursday of each month in the Age UK Peartree Centre.

**Information / Literature / Leaflets

Ongoing

Item #6 –  Support Groups and other updates

**Bosom Pals MK

Jaff – Jaff said that Bosom Pals would be marshalling Mile One of the Midnight Moo on Saturday 15th July. For more information see website – http://bosompals-miltonkeynes.btck.co.uk

**Bladder Group – The “Pee-Wees” –

No update. Group dormant.

**Carers MK

The Carers Lounge in the new Main Entrance is open.

**Health and Wellbeing Patient Support MKUH

No new update.

**Lymphoma Group 

All meetings are held at 2pm in the Peartree Centre, Chadds Lane. – for more information see: http://lymphomas.org.uk/information-and-support/lymphoma-support-groups/milton-keynes

**Prostate Group MKPCS

7th October PSA testing from 10.00am – 1.00pm in Wolverton Christian Foundation.

**MK Supermoles – Skin Cancer Support group

See website for more details of meetings.

**Healthwatch

Now booking for the Healthwatch Event in Middleton Hall on 12 September. MKCPP will have a stand as usual.

Their AGM is on the 26th July in the Conference Centre, Oldbrook.

**PPGs

The next Patient Congress meeting is 17th July Sherwood House, Bletchley.

Item #7 – Miscellaneous

**Andrea, pointed out that we had not had the usual Round Robin Introduction. Suze said it was due to the unusual event during the meeting so we had it better late than never.

**Jo Merritt, End of Life and Palliative care lead, said that she was prepared to give talks to support groups about symptom control and all the new initiatives that have been developed at MKUH.

**Suze said that in June she and Jaff were invited to attend the East of England Cancer Alliance Patient Advisory Board organised by Macmillan in Trumpington. She said that sitting on a boundary creates huge problems so felt we should explore all aspects across the two regions of East of England and Thames Valley. Jaff added that we had joined as MKCPP so that one or more of us could attend meetings and report back to spread the burden of travel. Linda agreed to go with Jaff to the August meeting.

**Rose attended Colorectal IV and said feedback to the ANPs from patients indicated that they were not happy to be asked to complete our new Journal/survey. This was noted so the sooner we can be DBS checked the better so that we can have access to the wards and patients can talk to us if they wish

**Amanda – said that 27th July was World Head and Neck Awareness Day and that she was hoping to have an awareness stand in the new Main Entrance but was having problems with the Communications team who were now coordinating such request. Jaff and Suze agreed to help because in the past Awareness stands had always been a great success in the old main entrance.

ADDENDUM: Amanda has now received permission to run a Head & Neck Awareness stand in the MKUH new entrance from 10:00 a.m. to 2:00 p.m. on July 27^th. Please support this if you can.

**The meeting closed at 2.30hrs

**Date of next meeting: PLEASE NOTE THIS IS ONE HOUR EARLIER THAN NORMAL!!! September Wednesday 13th – Eaglestone Restaurant Function Room 11.30 – 2.00

Core members (patient/carer) representatives invited to meet at 11.00 for refreshments and catch-up.

Chair signature……………………………………………………………………  Date ………………………