Public Meeting: 17 January 2023

All Party Parliamentary Group on Children, Teenagers and Young Adults with Cancer
Minutes of the Public Meeting 17th January 2023, 1.30-2.30pm

• Amy Callaghan MP - Member of Parliament for East Dunbartonshire, APPG CTYAC Chair
• Bambos Charalambous MP - Member of Parliament for Enfield Southgate
• Derek Thomas MP - Member of Parliament for St Ives
• Sir Paul Beresford MP - Member of Parliament for Mole Valley
• Helen Morgan MP - Member of Parliament for North Shropshire
• Sonia Malik - Head of Policy & Influencing, Young Lives vs Cancer
• Lauren Marks - Policy & Public Affairs Manager, Young Lives vs Cancer
• Sian Shah - Campaigns Officer, Young Lives vs Cancer
• Holly Cameron - Head of Policy, Public Affairs & Campaigns, Teenage Cancer Trust
• Ellen Ferris - Public Affairs & Campaigns Manager, Teenage Cancer Trust
• Louise Soanes - Chief Nurse, Teenage Cancer Trust
• Abby Derr (AD) - Social Worker, Young Lives vs Cancer (Speaker)
• Emily Armstrong (EA) - Clinical Lead Nurse, Teenage Cancer Trust (Speaker)
• Sasha Lang (SL) - Youth Support Coordinator, Teenage Cancer Trust (Speaker)
• Cerys and companion - Young person supported by Teenage Cancer Trust (Speaker) and companion
• Max and Dave - Young person and parent supported by Teenage Cancer Trust
• Georgie and companion - Young person supported by Teenage Cancer Trust and companion
• Seren Hughes (SR) - Operations Manager, Alike
• Jemima Reynolds (JR) - Head of Programmes & Engagement, Trekstock

Minutes

1.0 Opening remarks

1.1. The meeting was opened, introductions given from attendees, and housekeeping items shared.

1.2. Attendees were reminded of the focus of the meeting on mental health and emotional support for children and young people with cancer.

2.1. AD shared their experiences as a Social Worker supporting children and young people with cancer and the impacts that cancer can have, including on mental health. This included:

• Cancer can have a range of impacts and implications for children and young people, including the impact of the diagnosis and treatment itself on someone’s mental health, but also that other aspects of the cancer experience can have mental health impacts
• Social workers help to address whatever needs may arise with a holistic approach, supporting children and young people and their families directly day-to-day throughout their experience and linking with other resources and services that can help
• Education, finance, employment and long-term life decisions are some of the key areas that are impacted by a cancer diagnosis
• All of the different impacts that cancer can have on a child or young person’s life all have differing emotional impacts, which overall contribute to the impact on someone’s mental health
• Support for mental health throughout the cancer experience is key, as well as aiming to improve the support for the additional impacts of cancer e.g. financial, education, employment, which contribute to the impact on someone’s mental health

2.2. SL and EA shared their experiences from working to support teenagers and young adults with cancer. This included:

• Their role is to provide specialist low-level mental health interventions, emotional and practical support onwards, e.g. discussions and guidance on relationships & sex, work & study, body image & self-esteem; encourage peer support and activities on the ward and beyond; provide to support to family, partners, and friends
• They see a significant number of patients coming into services with existing unmet mental health needs. Ward teams and Psychology teams are sometimes the first access they have had to support
• The service gap for cancer patients aged 16-17 was highlighted; as often paedeatric services finish at 16 and adult services start at 18
• The importance of post-treatment and late effects were also highlighted.
  SL and EA recommended:
• Increase provision for mental health services in the community, supporting patients in their environment with the least possible disruption before and after they attend hospital
• More TYA psycho-oncology specialists to ensure referrals can be accepted and waiting lists do not grow
• More investment and recognition in the importance of ward nurses, Clinical Nurse Specialists, Youth Support Coordinators
• In-work mental health support for professionals working with young cancer patients, to reduce staff burn out and improve quality of patient care.  

3.0. Experiences of children, teenagers, young adults and their families

3.1. Cerys shared her experiences of mental health and cancer. This included:

• Grief experienced during and following her diagnosis and treatment and after losing friends, and the need to seek help.
• Cerys reached out to her Youth Support Coordinator for help, who referred her to psychological support. However, getting psychological support was difficult due to location and postcode boundaries meaning she was unable to receive this support from the hospital she was treated at.
• Eventually she was informed that support would be available elsewhere. However, the waiting list was over a month long to see a general child psychologist.
• As the general child psychologist was not a specialist in oncology, they were not sure how to help. Because of this, she only completed 3 sessions. “By this point I had learnt to cope on my own, which now looking back may not have been the healthiest ways, but it was the only way I could get through this difficult stage.”

3.2. Attendees viewed a pre-recorded video featuring Liv and Claire, a child and parents supported by Young Lives vs Cancer. The video shared their experiences of mental health and cancer, including positive experiences of support and their views on improvements to support available:

• Support through Hospital School and from the family’s Young Lives vs Cancer Social Worker were vital
• Insufficient mental health support has been available through clinical pathways
• The family has been worried about the impact of finances which has contributed to their mental health. Other impacts on mental health have included loneliness and isolation
• Recommendations for improvement included increased funding for mental health support and staff, a support pack for families, and better access to support that is easy to navigate for young people
• Video available here.

4.0. Discussion and questions

4.1. Attendees discussed the issues highlighted through the experiences shared by speakers.

4.2. Experiences of PIP were discussed. AD recommended that the PIP process should be made easier; it is a long paper process, with multiple phone calls and assessments etc, and takes a long time, with inconsistencies in decisions and regular need for appeals. EA highlighted that psychological support is not always available due to NHS capacity.

4.3. JR raised the importance of post-treatment support. LS highlighted that there is a “postcode lottery on support” and it was discussed that access to support varies based on location.

4.4. The gap in support between children’s and adult services was further highlighted and discussed.

4.5. Post-treatment support materials were discussed. A young person shared the usefulness of receiving a “young person’s guide” from Teenage Cancer Trust when she started treatment. It was acknowledged that similar materials are available from a range of charities and organisations. It was suggested that a guide for post-treatment could be helpful.

4.6. JR highlighted the potential benefit of organisations mapping out what support is and is not available across the UK.

4.7. JR also recommended that NHS staff working with young people received further training so they are fully equipped to support children and young people with cancer.

5.0. Closing remarks

5.1. Attendees and speakers were thanked for their contributions to the meeting.

5.2. It was discussed that the APPG CTYAC would take the following next steps in addition to the existing actions:

• Send a joint letter from the APPG, Young Lives vs Cancer, Teenage Cancer Trust and stakeholder charities to the Minister for Cancer and Minister for Mental Health about mental health support for young cancer patients, and to request a meeting with both ministers
• Submit parliamentary questions about when the ten-year plan to improve mental health services will be released [note – this was proposed prior to 24/01/23 announcement RE Major Conditions Strategy]

Meeting closed 2.30pm