Kent and Medway Cancer Network

Home , Sittingbourne

Medway & Swale CAG Meeting Monday 30th September 2019, 12.00pm-1.30pm NHS Swale CCG, Bramblefield Clinic, Grovehurst Road, Kemsley, Sittingbourne, Kent ME10 2ST Final Notes Present Initials Title Organisation Tracey Ryan (interim Chair) TRy Macmillan User Involvement Manager Kent & Medway Cancer Collaborative (KMCC) Susan Eley SE Patient Representative Medway CAG Member Marnie Enever ME County Lead, Volunteers Services Macmillan/Crossroads Bana Haddad BH Macmillan GP/Cancer Alliance Lead Clinical Commissioning Group /Cancer Alliance (CCG/CA) Chris Hannant CH Patient Representative Medway CAG Member Michelle Jee MJ Macmillan Cancer Lead North Kent CCG Liz Maclaren LM Children’s Oncology CNS Medway Foundation Trust (MFT) Cynthia Matarutse CM Lead Cancer Nurse Macmillan/MFT Anton Morgan-Thorne AMT Macmillan Engagement Lead Macmillan Robert Nelson RN Therapist The Harmony Therapy Trust Clare Nourse CN Primary Care Nurse Facilitator Macmillan Rini Paul RPa Breast CNS MFT Sam Rose (note taker) SR Partnership and Project Coordinator KMCC Apologies Stacey Croney SC Skin CNS DMC Sue Green SG Recovery Package Facilitator Macmillan Catherine Hayward CaH CNS MFT Rachel Pedder RP Partnership Quality Lead Macmillan Paul Rainer PR Patient Representative Medway CAG Member Anne Whybrow AW Patient Representative Medway CAG Member

Item Discussion Action 1 Welcome and The attendees “checked in” and a new member welcomed. check in

Medway & Swale CAG Meeting Monday 30th September 2019, 12.00pm-1.30pm NHS Swale CCG, Bramblefield Clinic, Grovehurst Road, Kemsley, Sittingbourne, Kent ME10 2ST Final Notes 2 Notes and action The previous notes were agreed prior to the meeting. log of previous meeting, matters Action 12 - To deferred this action to the next meeting, as TRy has arising been unable to secure a meeting date with the Managers at the ACTION: See Action Log Demelza House Action 29 - To remain open, TRy to email members Action 30 - To remain open, as being shared at the CAP meeting in November Action 31 – Closed Action 32 – Closed Action 33 – Closed Action 34 – Closed Action 35 – Closed Action 36 - To remain open, MJ waiting for Mental Health to reply and ME to confirm if Crossroads can help and support children Action 37 - To remain open, TRy waiting for the Wisdom Hospice to reply regarding provisions for children requiring counseling Action 38 – Closed Action 39 – Closed

3 National Cancer Tracey Ryan and Cynthia Matarutse presented on the NCPES Patient Experience Survey (NCPES) TRy spoke about the new 30/60/90 days project by NHS England. Maudie Vanden Berghe (the Chair of the East Kent Cancer Action Group) is a patient representative and lay member of this group. The first meeting is being held in London next week and CM will be presenting the Cancer Services at Medway Hospital as TRy had praised Medway’s NCPES work as they involve the whole cancer team and all services, e.g. imaging, pathology etc.

Medway & Swale CAG Meeting Monday 30th September 2019, 12.00pm-1.30pm NHS Swale CCG, Bramblefield Clinic, Grovehurst Road, Kemsley, Sittingbourne, Kent ME10 2ST Final Notes 4 Kent & Medway Tracey Ryan provided an update Cancer Action Partnership (CAP) TRy showed the members the Carers Info Sheet and explained this is Feedback a Kent and Medway wide A5 size info sheet design specifically for carers. TRy is hoping these will be available in GP Practices as well as waiting areas/rooms in hospitals. The members agreed this is a great idea to offer carers information. ME confirmed that Crossroads has set up a dedicated email address on the info sheet to monitor the usage.

TRy mentioned Pauline Wood’s Information Steering Group meeting. The business case is being finalised and funding has been agreed by Macmillan. Laura and Hayley have both now left the Trust to pursue other careers.

With the plan of Trusts taking ownership of CAG meetings from April 2020. Dartford and Gravesham Trust will be piloting the new CAG meetings from November 2019. TRy will be attending a pre-meeting with the Trust and patient/carers members on the 4th October to review and discuss the new meeting format. CM raised concerns that she has had no information on how this will be implemented in April 2020 from the Trust. SR confirmed Ian Vousden (IV) has spoken to all of the Trusts but she couldn’t confirm who he had spoken to at Medway Foundation Trust. CM mentioned Ellie Thomas is no longer working in Cancer Services and senior management has changed. CM asked if it had been discussed with the Patient Public Engagement team. SR to confirm with IV, who he ACTION: See action log 40 had spoken to and feedback this information to CM.

TRy said it would be nice to have a Chairperson in place before the Trusts take ownership in April 2020, and if any member is interested to contact Tracey Ryan or Sam Rose

Medway & Swale CAG Meeting Monday 30th September 2019, 12.00pm-1.30pm NHS Swale CCG, Bramblefield Clinic, Grovehurst Road, Kemsley, Sittingbourne, Kent ME10 2ST Final Notes Living with and Beyond Cancer is now called Personalised Care and Support (PCS)

TRy showed the members the You Said, We Did information and the requests for feedback from patients. TRy highlighted the need for more patients and carers, however, there are still difficulties recruiting members. CH said support groups have the same difficulties getting new patients to attend their meetings. It was suggested that on the Health Needs Assessment (HNA) during the End of Treatment, CNSs could remind the patient of the support groups and services to promote/raise awareness. This ensures the patients who need details of support groups receives the information at the right time during their treatment.

5 Patient Group Discussion Experiences It was highlighted that there are no skin cancer support group in Kent and Medway. This lead on to discussing the new DMC service in Medway which is not receiving good reviews, due to letters being incorrect and unprofessional. SE will be attending the Skin TSSG in November and TRy to ask if she can share her patient experience at ACTION: See action log 41 this TSSG meeting. CM is unable to provide a counselling service from Medway NHS Foundation Trust as this is a separate service and MJ mentioned it is in DMC contract. ME said Crossroads is not receiving any skin cancer ACTION: See action log 42 patients. MJ will share the Crossroad flyer again. It was mentioned that Talking Therapists was difficult to access. ME said if there is proof of a gap in counseling services in Medway and Swale, Crossroads may be able to help and support with trained volunteers. RN mentioned the Harmony Therapy Trust provides 6 sessions for patients and 2 sessions for carers.

6 Check Out Everyone “checked out”. 4

Medway & Swale CAG Meeting Monday 30th September 2019, 12.00pm-1.30pm NHS Swale CCG, Bramblefield Clinic, Grovehurst Road, Kemsley, Sittingbourne, Kent ME10 2ST Final Notes 7 Dates of next Monday 13th January 2020, 12noon – 1.30pm meetings Rochester Healthy Living Centre, Delce Road, Rochester

Cancer Action Group (CAG) Meeting Dates 2019/2020

DGT-CAG Wednesday 27th November 2019, 12.30pm-2.30pm, Darent Valley Hospital, Children’s Resource Centre, Darenth Wood Road, Dartford DA2 8DA

East Kent CAG Friday 10th January 2020, 11am-1pm, Education Centre, Kent & Canterbury, Large Boardroom

Medway CAG Monday 13th January 2020, 12noon-1.30pm, Rochester Healthy Living Centre, Delce Road, Rochester

West Kent CAG Wednesday 22nd January 2020, 10.30am to 12.30pm, Maidstone Academic, Alan Pentecost Room, Maidstone Hospital

Tumour Site Specific Group (TSSG) Meetings

Cancer Action Members/Volunteers wishing to utilise their skills, knowledge and voice further can join as a ‘Patient Representative’ at TSSG Meetings which are held in 2 sessions; Spring/Summer and Autumn/Winter. If you wish to register your expression of interest or require further details, please contact Sam Rose – [email protected] or Tracey Ryan [email protected]