Milton Keynes Cancer Patient Partnership

Sharing the Caring for Cancer in Milton Keynes

MKCPP meeting minutes May 9th, 2018

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MKCPP

Milton Keynes Cancer Patient Partnership

 May 9th 11.30–14:00 Eaglestone Function Room

 

MINUTES

 

Present:

Sally Burnie                                          Head of Cancer Services

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

Claire Crick                                           User rep, Breast

David Buckley                                      MK Cancer Prostate Support

Christine Cowap                                  Macmillan Engagement Co-ordinator for MK and Bucks

Jen Davies                                             Cancer Manager

Carol Hewett                                       User rep, Upper GI

Jaff Newton                                          MKCPP Secretary, User rep, Breast

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

Jean Mattinsley                                   User rep – Carer, Healthwatch rep

Vanessa Freeman Gwynn                 User rep, Carer

Trevor Hutson                                      User rep, Laryngeal cancer patient

Sally Hutson                                         User rep, Carer

Linda Wilson                                         User rep, Breast

Tony Kelly                                              Volunteer – Mac Unit and car driver

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

Angela Sheldrick                                  Breast re-design Project Manager

Kate Iseton                                           Lymphoedema nurse – Willen

Annette Waters                                  Caring for carers

Sophie Austin                                       Cancer Dietitian – Wellbeing team

Dave Wakely                                        “From Me to You Event” (writing letters to cancer pts.)

Heather Oddy                                      Administrative project officer for Volunteering Matters

Caroline Tovey                                     Cancer Psychologist -Wellbeing team

Zak (Srinivasa Rajamani)                   Cancer Physiotherapist – Wellbeing team

Amanda Maguire                               EOL ANP

Lisa Robson                                           Loved Forever (lasting memories of loved ones)

 

 

Apologies:

Elizabeth Bradley                                User rep, Breast

Martin Bell                                           User rep prostate group

Nicky Beboeau                                    Support and Information

Sam Timmins                                       Macmillan Cancer Information & Support Manager

Amanda Naylor                                   H&N ANP

Steph McPherson                               User rep, Breast & Ovarian

Ray McPherson                                   User rep, Carer

Sue Fitzgerald                                      Gynae ANP

Jeanette Wells                                     Gynae ANP

Michaela Tait                                       Patient Experience Manager

Sam Younan                                         User rep, Chair Prostate group

Graham Anderson                              User rep

Bob Gould                                             Red House PPG Observer

Vanda Gould                                        Red House PPG

Revd. Sarah Crane                              Team Chaplain

Paul Maclean                                       CRUK Volunteer

Sally Leverett                                       Willen Hospice

Geoff Saunders                                    User rep, Lymphoma – REMAP

Carly Polti                                             Lymphoedema nurse – Willen

Barbara Saunders                               User Rep, Lymphoma

David Stevenson                                  User rep, MK Moles (skin)

Carol Ord                                              Cancer Alliance STP Programme Manager (Bedfordshire, Luton & MK)

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

Kim Weston                                          Bereavement Officer

Tina Churchill                                       Macmillan

Alan Hastings                                       Chair, PPG Whaddon Medical Centre

Gail Spooner                                        User rep, Breast, Lead LGFB

 

Future dates for your diary: please note the varying times.

July Tue 10th – 11.30 – 14:00 – Eaglestone Function Room

Sept Wed 12th – 11.30 – 14:00 – Eaglestone Function Room

 

Nov Tue  13th –  12:00 – 14:30 – Eaglestone Function Room

 

 

 

 

Item #1 – Welcome

**Suze welcomed everyone, especially our guest speakers, Annette Waters, Dave Wakely, Lisa Robson, Heather Oddy, Sophie, Caroline and Zak from the Wellbeing team.

 

**Apologies

These were noted including Tina Churchill, MacMillan Partnership Quality Lead

 

**Minutes

Amendments – the ground breaking date for the Cancer Unit is July not May. H&N Sally’s daughter was hoping to raise £1000 not £10000

After the Minutes were amended they were agreed and signed by the Chair.

There were no matters arising.

 

Item #2 – Round-robin introductions

 

Item #3 –Guest speakers

** Annette Waters

Annette introduced herself as an NLP trainer, coach, nutritionist and hypnotherapist helping people and those they care for through anxiety, depression and other mental health challenges. She gave us information about the courses she runs and what encouraged her. She told us about her personal experience of dealing with mental health issues and how she sort help for herself in order to cope effectively.

An interesting discussion followed.

 

**Dave Wakely

Dave, told us about the inspirational letter writing charity “From me to you” and the workshop being held in MK on 14th June. He spoke about the benefits of writing a letter to a friend with cancer as opposed to sending an email or text, or even a face to face conversation which can often be so difficult. The careful thought that needs to go into it … the pleasure of receiving a letter that can boost ones spirit, make someone’s day and know another person cares… It is an art we should not lose. For more information see the website – From me to you.

 

**The Wellbeing Team

Sophie Austin – Cancer Dietician

Sophie told us about her new post, working in Ward 22 and outpatient clinics, helping patients from diagnoses to living with and beyond cancer. She is also participating in the “HOPE” course and speaking at support groups.

Caroline Tovey – Cancer Psychologist

Caroline said she was developing her role within the team, working one-to-one with patients during and after treatment and also, importantly, supporting staff.

Zak (Srinivasa Rajamani) – Cancer Physiotherapist

Zak as well told us of his background in specialist palliative care and the benefits of physical exercise during and after treatment; also taking part in group activities to socialise, being outside in the fresh air and setting realistic goals. He, too, will be talking to support groups locally and working with inpatients and others.

A really good discussion followed. This service has been long awaited and it has been made possible by the funding from Macmillan. They will also liaise closely with Willen to ensure joined-up care.

 

Item #4 – MKUH – Sally/Jen

Sally started with the new staff appointments. Phillip Ball is lead for Palliative Care and End of Life with a two year post, and she hopes he will attend our meetings. She welcomed the new Wellbeing Team and the benefits they will bring to patients and staff. A new Oncologist, Dr Vasarmee from South Africa, would cover gynae patients, working first as a locum for twelve months before the post becomes substantive.

She spoke about the Trust sitting between the two cancer Alliances – Thames Valley for the majority of Cancer pathways and East of England for everything else. She said MK had been selected with funding by the STP to lead on the FIT programme for bowel screening. She said that she will tell us at the July meeting about the actions taken as a result of the National Patient Cancer Survey.

She updated us on the New Cancer Centre, starting with the public fundraising launch on 7th June, with a Breakfast meeting, a launch event in the Intu centre, and an afternoon tea party in the Macmillan garden for patients, carers, volunteers and staff.

She invited volunteers to do a mock CQC inspection of Cancer Services before the official inspection in the autumn. Crib sheets will be provided. More details to follow.

She congratulated the Cancer Services team on meeting the three main targets which is no mean feat: a lot of work has to take place to ensure that patients are seen within the target time and that their pathways are clear and timely.

David asked about having radiotherapy on site. Sally responded by saying that the Trust was still committed but realistically it was at least two years away – but a foot print had been secured. Meanwhile the majority of patients would continue to be treated locally at Genesis Care, and complex cases would go to a specialist centre.

Jen thanked us for attending the AGMs and said she would be asking for reps to attend the IVs (Internal Validations) that need to be completed by the end of June. She also requested donations of any wedding items that can be used when weddings take place at the hospital for very ill patients.

 

Item #5-  External Updates

**Macmillan

Chris said that Tina Churchill was unable to attend the meeting. The Bertie Bus will be returning to MK in July, the 16th – 20th, and she would appreciate some volunteers but will provide more information nearer the time. She said the TV Cancer Alliance were holding interviews for the replacement of Michael Mawhinney.
She said she was working hard to contact patient groups and would welcome suggestions.

**Bosom Pals

Linda said the committee was grappling with GDPR to get everything in place by the meeting on 1st May. They get new members each month. She and Jaff would be attending the Breast AGM on 27th April. The May meeting is Acupuncture by Gabi from Genesis.

For more information see website – http://bosompals-miltonkeynes.btck.co.uk

 

**Lymphoma

 

7th June  Sharon Kinge,  Age UK
2nd Aug  Erika, Lymphoma Assn.

**MKSuperMoles

 

See Facebook page for more details of meetings – https://www.facebook.com/groups/MKSuperMoles/

 

**MK Prostate Cancer Support

David said that he would provide details of the PSA testing day to be held in October.

He said he had met with the medical students arranged by Jane Wale to share his cancer experience and had thoroughly enjoyed it.

He indicated that although the prostate group was well attended there were few active members. Unfortunately this is a problem in many groups.

 

**Head and Neck

Sally said that the Head and Neck Cancer Support Group would now be meeting in the Swan Revived Hotel in Newport Pagnell on the second Wednesday of the month. Sophie Austin, dietician, will be one of their speakers and also Sophie Boyle, a speech therapist.

She also proudly told us that her daughter Esther had completed her London Marathon run in 6hours 20minutes and raised the amazing sum of £3000+ for the National Laryngectomy Patient Group

We send her our congratulations, very well done.

 

** Hanslope & District Cancer Wellbeing & Support Group

Andrea said that at a combined meeting with the Carers group, they were having a presentation from Amanda Maguire, the End of Life ANP.

 

**Healthwatch

Jean said that they had produced a New Strategy and they encourage everyone to join up and have their say in local healthcare.

 

**Willen

Kate reported that Willen had had medical students gaining experience in all departments at the Hospice for over a month. She welcomed the link with the new hospital Wellbeing team and said it will benefit both patients and staff. She said that the breast/lymphoedema programme was continuing to work well and the walking groups lead by Nicky were also working well.

 

**Environment audits

Jaff – we need to arrange more for 2018, when everyone is DBS checked.

 

*Cancer and Beyond

Vanessa said that the next support meeting hosted by MK College would be on 7th June but the format would be changed to having small tables to encourage group discussion before and after the speaker.

Suze said that the Asplands surgery was interested and also one in Stony Stratford, both practice managers would be invited on 7th June.

 

**Website – www.mkcpp.org

For updates between meetings, check out the Tracker page on our website, http://mkcpp.org/tracker/

 

**LGFB

The dates for this year are, 24th,May, 21st June, 19th July, 16th August, 20th September, 18th October,15th November. It is hoped that two sessions for teenagers will be arranged.

 

**Volunteering matter Driving Scheme

Heather introduced herself and said she had been working in health related jobs with older vulnerable people for 15 years. She was now developing the driving scheme locally, funded by MK Council. It provides transport from a patient’s home to a huge variety of appointments and can wait for two hours and then take them home, anything longer can be arranged for a later pick up. There are 10 drivers in MK who are more than just a driver, they care and are rated highly by patients and GPs. Journeys can be booked and then coordinated by staff in MK. They usually require three days’ notice but are frequently flexible. It costs £15 per year to join the scheme and then 45p per mile for the journey.

Discussion followed about other local schemes and what happens when funding runs out. But generally the scheme was applauded and it is hoped that it will continue.

 

**Lisa Robson explained her new business, Loved Forever, which helps people compile lasting memory items, albums, etc. from deceased loved ones, for families to keep. She intends to contact Willen and also the EOL team at MKUH to see if the service is of interest to their patients and families.

 

**Amanda End of Life ANP

Amanda left leaflets about the day course she would be running during Dying Matters week, all welcome.

 

Item #6 – AOB

**Courtyard gardens, Jaff said Santander were coming in with a team to give the larger garden a makeover in preparation for the fund raising launch. Help with the gardens is always welcomed.

 

 

**The meeting closed at two minutes early at 13.58 hrs

 

MKCPP Meeting Minutes July 2017

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Milton Keynes Cancer Patient Partnership

Tuesday 10th July 2017, 12:30 – 2.30

BICS Training Room, Oak House

mkcpp logo

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 27th, 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 27th. 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 ………………………

MKCPP Meeting Minutes May 2017

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MKCPP

Milton Keynes Cancer Patient Partnership

 Wednesday 10th May 2017, 12:30 – 2.30

BICS Training Room, Oak House

MINUTES

Present:

Sally Burnie                             Head of Cancer Services

Jen Davies                              Cancer Manager

Carol Hewett                           User rep, Upper GI

Geoff Saunders                      User rep, Lymphoma  – REMAP

Revd. Sarah Crane                 Team Chaplain

Jaff Newton                             MKCPP Secretary, User rep, Breast

Sam Timmins                          Macmillan Cancer Information & Support Manager

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

Sabina Dawson                      User rep, Carer

Sue Fitzgerald                         Gynae ANP

Steph McPherson                   User rep, Breast & Ovarian

Amanda Naylor                       H&N ANP

Sue Stannard                          Speaker – Breast cancer patient

Maria Buckley                         MKPCS Secretary

Apologies:

Jean Mattinsley                       User rep – Carer, Healthwatch rep

Michaela Tait                           Patient Experience Manager

Barbara Saunders                  User Rep, Lymphoma

Elizabeth Bradley                    User rep, Breast

Dawn Alan                               User rep, Carer, Paediatric, The Henry Allen Trust

Sam Yojnan                             User rep, Chair Prostate group

Claire Crick                             User rep, Breast

Tony Kelly                               User rep, Lower GI, volunteer – Mac Unit & Community Car Scheme

Laura Jeffery                           MK Community Action –  Car Scheme

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

Chris Ford                               Clinical Trials Administrator (CHORT)

Kate Iseton                              Lymphodema nurse – Willen

Carly Polti                               Lymphodema nurse – Willen

Paul Maclean                          CRUK Volunteer

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

Ray McPherson                      User rep, Carer

Sally Leverett                          Willen

Jeanette Wells                         Gynae ANP

Kim Weston                            Bereavement Officer

Graham Youngman                 Asplands PPG, User rep

Craig Macmillan                      Oncologist, Linford Wood Medical Centre

Barbara Pierce                        Breast care nurse, Linford Wood Medical Centre

Kim Williamson                       Education, Linford Wood Medical Centre

Gail Spooner                           User rep, Breast, Lead LGFB

Jane Douglas                          Macmillan Mobile Information Lead

Christine Cowap                     Macmillan Engagement Co-ordinator for MK and Bucks

Shaeen Dalvi                          Macmillan Partnership Lead for Bucks and MK

Alan Hastings                         Chair, PPG Whaddon Medical Centre

Anil K Hemandas                    Consultant Colorectal and General Surgeon

Future dates for your diary:
July Tuesday 11th – BICSTraining Room, Oak House 12.30 – 2.30
September Wednesday 13th – Eaglestone Restaurant Function Room 11.30 – 2.00
November Tuesday 14th – BICS Training Room, Oak House 12.30 – 2.30

 

 

Item #1 – Welcome

**Suze first paid tribute to our irreplaceable member, Richard Freeman who so sadly died on Easter Sunday. She said that perhaps later we can think of a suitable memorial to have in the new cancer building because the project was very dear to his heart and he had worked tirelessly and enthusiastically for cancer services at MKUH. RIP

 

**Suze then welcomed everyone, especially our guest speaker, Sue Stannard, and Maria, the  secretary of the local Prostate cancer group.

 

**Apologies

These were noted.

 

**Minutes

Geoff pointed out that in Item 6 *Lymphoma Group  that it was Rosa Antoncoiwarva, a founder member of the group, who was made an Honorary Life Member and not Fay Grech-Marguerat.

After the correction the Minutes were agreed and signed by the Chair.

 

**Matters Arising

None

 

**Action Points

None

 

Item #2 – Round-robin introduction

**Members and guests briefly introduced themselves.

 

Item #3 – MKUH – Sally/Jen

**Jen said that there had been some team changes

Irfan Molvi – Team leader/clinical data tracker, General Medicine

Roberta Sharpe – Team leader/clinical data tracker, Surgery and Women’s and Children

Michelle Morrison – Breast and Gynae MDT Co-ordinator/ data tracker (newly appointed)

Gail McKune – UGI/HPB/CUP and Skin Co-ordinator/ data tracker (all General Medicine, changed Colorectal for Skin)

Leigh-Ann Taylor – Urology and Colorectal MDT Co-ordinator/ data tracker (all surgery, changed Skin for Colorectal)

Amanda Salt – Lung, CNS, Haem MDT Co-ordinator/ data tracker (General Medicine)

Iona Simmons – Data tracker, Breast

Alice Sheridan – Bookings Co-ordinator (part time)
Natalie Cook – Cancer Services Administrator

Waiting to advertise the full time post for Cancer Services Booking Co-ordinator (to replace Michelle)

Jen then said that the internal validations would be finished by mid-June, uploaded and sent off to the National Peer Review.

 

**Sally said that the new Cancer Centre was progressing well and that they would soon be arranging a meeting with patient representatives to give their opinion on colours and furniture etc.

The public launch will take place in September when there will also be a recruitment drive to ensure that there is the correct skill mix of staff and to ensure sustainability with creative ways of working and training.

Good news that the cancer targets for the year had all been met including those with the tertiary centres.

Staffing in chemotherapy was still challenging, so to meet the demand agency staff were being used in the short term.

Dr Daniel Ajzensztein (pronounced Eyesenstein) is a new Oncology member of staff in a joint post with Oxford.

Radiotherapy at Genesis will continue for three more years plus two to ensure sustainability of the service. Discussions with Oxford are still ongoing.

A new multi-storey car park will be built before the end of the year to alleviate present problems.

 

Item #4 – Guest speaker Sue Stannard

Sue thanked us for inviting her to speak about rebuilding her life after breast cancer. She told us about her cancer journey, the ups and downs and how she coped, treating it rather like a project that had to be understood and managed. She then went on to tell us about how she became involved with the breast cancer “Now” charity which led to research, campaigning, fund raising and working with various teams to raise awareness and tackle the inequalities of patient pathways depending on location.

It was a fascinating, thought provoking talk which created many questions and much discussion.

 

Item #5 – Working groups

**Cancer and Beyond 

Suze said that we will be contacting Toni Fisher at the WMC  to arrange for another local meeting and to establish a similar group at the Red House surgery. We are even more determined to progress this project for Richard.

 

**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

Suze distributed the new version hot off the press. 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 the gardens are well used and enjoyed by patients.

Addendum – a mother duck made her nest in the garden and hatched 3 ducklings, much to the delight of patients, staff and people in the restaurant. Unfortunately they were rounded up and taken to a more suitable environment.

 

**Website – www.mkcpp.org

Suze continues to monitor and update. She said that there had been over 1000 hits. 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 she would try to arrange an audit in the Head & Neck Clinic area before the next meeting, and also Ward 22.

 

**Macmillan

 Jaff reminded everyone that the Macmillan Bus, Bertie, would be in Newport Pagnell on 1st June, Bletchley on 2nd June and Willen Lake car park on 25th June.

Sam said that there were still places for the Macmillan Living With and Beyond Cancer Conference on Friday 9th June in the Conference Centre Oldbrook.

Angela said that a previous Head & Neck cancer patient would be telling his story and performing some magic.

 

**LGFB

Jaff said that the LGFB continue to be extremely popular and are held on the third Thursday of each month in the Age UK Peartree Centre. They are booked up until July.

 

**Information / Literature / Leaflets

Ongoing

 

Item #6 –  Support Groups and other updates

**Bosom Pals MK

Jaff – Jaff said that Bosom Pals’ monthly afternoon meetings at Dobbies were popular and attracting new members. The Annual BBQ in Emberton Park is the 25th June. 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 area will be open in June.

 

**Health and Wellbeing Patient Support MKUH

No new update.

 

**Lymphoma Group 

 Geoff said that the National Conference and Wellbeing Weekender was held at Whittlebury Hall on 6th and 7th May.  Geoff talked about having a “Buddy” and the problem of confidentiality in the announcement of a death if only a first name is known.

Revd. Sarah said that data protection does not apply once someone dies.

Geoff went on to say they are tying in with other groups, e.g. Singing – Beyond the “C”. They will have a stand at the MK50 event.

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

Maria said that on 1st May MKPCS held an Awareness event road show in Leighton Buzzard.

On 17 May 2017 they will be manning a stand at the Shenley Wood Village Wellbeing Day, and that their next meeting on the same day in the evening they are having presentations by Peter Gosling (PCUK Services Representative and Tonina Ashby of Tollers Solicitors.)

For more information see website – http://prostatemk.org

 

**MK Supermoles – Skin Cancer Support group

Skin IV is on 14th June

Melanoma Conference, 16th & 17th June, Bristol.

email enquiries@melanomapatientconference.co.uk

 

**Willen support group

No update to report.

 

**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.

 

**Research

Linda said there is a new overarching group meeting in June to be chaired by Martin Wetheral. They will look at Terms of Reference.

 

**PPGs

The next Patient Congress meeting is 19th June Sherwood House, Bletchley.

 

Item #7  – Miscellaneous


**Rose attended Colorectal AGM and said that there were delays in histology results often due to outsourcing. The IV is on 16th June.

 

**Amanda said that that there was a shop in Blackpool that provided Sim-cards being for cancer patients and that they were particularly useful for H&N patients also restaurant cards explaining ‘modified diets’. There was a 24hr helpline.

Addendum: Chris Lewis, a Croydon based cancer survivor also runs a free service for cancer patients involving phone calls, text and data, along similar lines. For more information go http://www.chris-cancercommunity.com/free-callstxtsdata/ . We are hoping Chris will come to talk to us at a meeting soon.

 

**The meeting closed at 2.27hrs

 

**Date of next meeting: Tuesday July 11th 2017

 

*Venue: BICS Training Room, Oak House 12.30 – 2.30

 

Patient representatives to meet at 12.00 for refreshments and catch-up.

 

 

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