Inadequate specialist mental health support risks derailing young cancer patients’ lives, say experts

Teenage Cancer Trust launch #NotOK campaign which calls on UK Governments to:

• End the postcode lottery by providing guaranteed access to specialist psychologists
• Develop and fund a comprehensive blueprint of psychological care for young people with cancer

Young people with cancer are unable to access specialist mental health support in parts of the UK, which is putting them at risk of life-long trauma that urgently needs to be addressed, the UK’s leading teen cancer charity has found.

Teenage Cancer Trust has revealed today that more than a third of young cancer patients who felt they needed it, have had no, or reduced access to a psychologist in the six months prior to being surveyed, due to inadequate access in parts of the UK.

The ‘#NotOK: Filling the gaps in mental health support for young people with cancer’ report, published today to mark the launch of the charity’s #NotOK campaign, also highlights the frustrations of psychologists who feel like they are ‘firefighting’ due to the high demand on ‘limited resource’. 87% of psychologists surveyed think current national provisions for specialist psychological support for teenagers and young adults with cancer is insufficient to meet their specific needs.

Teenage Cancer Trust warns that young cancer patients could face depression, anxiety and other mental health conditions well into their adult lives unless UK Governments provide protected funding for high quality support that is available from the point of diagnosis.

The report also reveals that:

• Just over half (52%) of young people said their mental health and wellbeing had been very poor (17%) or poor (35%).
• 57% of young people felt they had needed to see a psychologist in the six months prior to being surveyed but 35% either had not (20%) or had reduced access (15%).
• 70% of young people said that fewer opportunities to speak to other young people with cancer had had an impact on their wellbeing.

Dr Louise Soanes, Chief Nurse, Teenage Cancer Trust said: “Young people are at a unique stage in their lives. They are discovering who they are and undergoing rapid developmental changes. A cancer diagnosis pauses that; they suddenly lose any newfound independence, and they don’t know whether they’re going to live or die. Meanwhile, life around them goes on.

“Psychological support is as important as the treatment for the cancer itself. Yet more than a third of young cancer patients we spoke to have had no, or reduced access to specialist support in the six months prior to being surveyed. This must improve.

“Tailored and comprehensive support to deal with the impact of cancer is vital because without it, there’s a risk young people’s mental health trauma will outlive their cancer diagnosis. That’s why we’re calling on UK Governments to keep young lives on track by ensuring this desperately needed specialist support is available from diagnosis wherever a young person lives.”

Before the pandemic, a study exploring young people with cancer’s mental health during treatment showed 90% reported anxiety, 83% felt loneliness, 70% faced depression, and 42% experienced panic attacks. High demand for mental health support is not new, but Covid-19 has meant that young people with cancer have never needed it more urgently.

Dr Soanes said: “The coronavirus pandemic has made the impact of cancer on young people even worse. Not only have they needed to contend with the reality of a cancer diagnosis and the fear of contracting the virus itself, many faced appointments and treatment alone. All whilst shielding put a stop to vital face-to-face contact with friends and family.”

Chloe Dalton-Baker, 23, from Scunthorpe, was 20 when she was diagnosed with thyroid cancer. She had to have both thyroid glands removed but didn’t need chemotherapy or radiotherapy. Chloe had been told she had the ‘good type of cancer’ which made her feel guilty and stopped her asking for psychological support.

Chloe said: “I didn’t feel like I could ask for help. I would have felt like a fraud. You feel like you don’t deserve it, and that they should be spending their time helping people who had had chemotherapy or radiotherapy instead. It was a throwaway comment, but those four words really messed things up for me.

“Because it all happened so quickly and because I had surgery rather than going into hospital for chemotherapy or radiotherapy, I don’t think I had time to get my head around it and get closure. Three years later it’s still sinking in. Seeing a counsellor or a psychologist would have helped me get that closure. If I’d got that help, I would have had a more positive outlook overall and been in a much better place.”

Chloe has long-term side effects because of her cancer which can be hard to live with. She said: “I would encourage people not to bottle up how they are feeling and to ask for help if they aren’t immediately offered it. It is ok to not to feel ok.”

Through the specialist nurses and youth support coordinators they fund, Teenage Cancer Trust is the only UK charity dedicated to meeting the specialist nursing, care and support needs of young people aged 13-24 with cancer. The charity pioneered the creation of age-appropriate environments which are found in all of its 28 Teenage Cancer Trust units in NHS hospitals.

Throughout the pandemic, Teenage Cancer Trust has been a lifeline for many young people with cancer, providing specialist nursing and emotional support at a time of unpredictability and heightened restriction. Psychological support continues to play a vital role and it is provided by several people and in a variety of ways; each one valuable and each one important to access at different stages of a young person’s life.

Dr Soanes continues: “Our Youth Support Coordinators and specialist nurses provide incredible one-on-one and peer support, helping to break down clinical jargon and supporting young people’s wellbeing by being there to talk, whenever they need. If they have any concerns on a young person’s mental health, they know a referral to a specialist teenage and young adult cancer psychologist is needed. However, it’s that high level targeted support that not all young people are offered, or have access to, when they need it.”

The charity says that while all UK nations have acknowledged at some stage the needs of teenage and young adult cancer patients in accessing psychological support, Teenage Cancer Trust’s findings demonstrate how not all young people are currently able to access the support they need.

“This report demonstrates how these positive intentions are not being consistently met,” Dr Soanes said. “We know there are some excellent examples of good practice out there. We now need UK Governments to work with us and other experts to agree and fund a model of care that suits the specific needs of teenagers and young adults with cancer.”

Members of the public are being asked to support Teenage Cancer Trust’s ‘#NotOK’ campaign by writing to their MP, MS, MLA or MSP: www.teenagecancertrust.org/notok-uk

Read the #NotOK Northern Ireland press release, the #NotOK Wales press release and the #NotOK Scotland press release.

Ends.

For more information, a copy of the embargoed report or for interviews with a charity spokesperson or a young person, please contact: 

Izzie Marshall, Media & PR Officer (Policy, Services & Campaigns), on 07534 952 142 or email [email protected]

Lauren Snaith, Media & PR Manager (Policy, Services & Campaigns), on 07852 998234 or email [email protected]

For out of hours media enquiries, please contact the Duty Press Officer on 0757 225 1265.=

Notes to Editor

• You can view the #NotOK Hero film here: https://youtu.be/o1ch8FGgQbc
• The ‘#NotOK: Filling the gaps in mental health support for young people with cancer‘ report includes data collected through insight work with young people, Teenage Cancer Trust staff, and healthcare professionals.
• A total of 121 young people with cancer took part in the survey that is referenced in the report between March and April 2021.
• Before the pandemic, a study conducted by Young Lives vs Cancer exploring young people with cancer’s mental health during treatment showed 90% reported anxiety, 83% felt loneliness, 70% faced depression, and 42% experienced panic attacks.

About Teenage Cancer Trust

• Every day, seven young people in the UK aged 13 to 24 hear the words “you have cancer”.
• Teenage Cancer Trust puts young people in the best possible place, physically, mentally and emotionally, for their cancer treatment and beyond.
• We do it through our expert nurses, support teams, and hospital units. And we’re the only UK charity dedicated to providing this specialised nursing care and support.
• Teenage Cancer Trust is a registered charity: 1062559 (England & Wales), SC039757 (Scotland).