Written evidence submitted by the Teenage Cancer Trust (CYP0094)

What progress have the Government made on children and young people’s mental health, including but not limited to:

• The ambitions laid out in the 2017 Green Paper
• Provision of mental health support in schools.
• Provision of support for young people with eating disorders
• Addressing capacity and training issues in the mental health workforce
• Improving access to mental health services

Teenage Cancer Trust would question the extent to which the ambitions laid out in the 2017 Mental Health Green Paper will have had impact on improving the specific psychological support needs for teenagers and young adults (TYAs) with cancer.

Young people with cancer have a specific set of needs, including their emotional and psychological wellbeing which differ from children and older adults.

The Green Paper acknowledges that the presence of a chronic condition increases the risk of mental health problems from two – six times, but fails to account for how it might specifically support such needs in the group.

Teenage Cancer Trust’s report ‘What really matters to young people with cancer’ (2016) outlines how cancer in young people brought about ‘profound shifts in their personalities and psychological outlooks’.[1] Adolescence can be a confusing and difficult time anyway, without young people having to manage these feelings alongside the anxiety a cancer diagnosis can bring. Young people consistently highlight worry about their physical appearance, loneliness and anxiety as having a lasting effect on their self-esteem.

In 2018, young people with cancer identified psychological support as their top priority for research as part of the James Lind Alliance Teenage and Young Adult (TYA) Cancer Priority setting partnership – ‘#1 What psychological support package improves psychological well-being, social functioning and mental health during and after treatment?’[2]

However, young people with cancer at Teenage Cancer Trust’s Youth Advisory Group highlighted that psychological support was the area they were least satisfied with about their care, with the majority saying there was little or no mental health support available for them. Those who had been given mental health support described it as ‘invaluable’.

Young people with cancer have complex psychological needs, and so Teenage Cancer Trust believe that every young person with cancer who needs it should be able get age-appropriate support from a mental health professional from diagnosis through treatment and after-care. However, the Teenage Cancer Trust General Survey in 2018 highlighted that only 44% of TYA said they had access to a psychologist after their treatment had finished and only 61% of young people said they had access to a psychologist or counsellor throughout their treatment for cancer. It is essential that the mental health and emotional needs of young people are assessed throughout their cancer treatment and beyond. What is more, a Teenage Cancer Trust study – ‘Cancer X Coronavirus: the impact on young people with cancer’ (2020) showed that young people with cancer struggled particularly to access psychologists throughout their treatment.

Provision of mental health support in schools was limited in the 2017 Green Paper. Despite highlighting that not all young people would access mental health support through schools, it does not explain how school-based solutions will help young cancer patients who are not attending schools. Young people with cancer may have to miss long periods of education due to treatment plans, which means they are less likely to have access to mental health support provided.

The wider changes needed in the system as a whole, and to what extent it should be reformed in favour of a model that focuses on early intervention in children and young people’s mental health to prevent more severe illness developing

Dr Clare Jacobsen, Chair of the TYA Clinical Psychology Network, (2018) found that young people with cancer who would benefit from psychological support are being missed because of the lack of resource available to do screening.

Jacobson carried out a study investigating the prevalence of psychological need in TYA cancer patients.  The investigation found that out of the 230 patients screened, 91 (40%) showed psychological morbidity. This study shows the importance of specialist clinical psychologists in assessing the psychological needs of young cancer patients.

A separate study from Jacobsen (2016) showed that in all 28 TYA oncology units across the UK, there is some access to level 2 psychological care (e.g. doctors or nurses with basic psychological experience who can offer good communication). However, access to levels 3 and 4, where professionals can offer complex psychological assessment and intervention, varies. At the time of study, only eight TYA oncology units had TYA-specific psychological provision.[3]

Teenage Cancer Trust Youth Support Coordinators provide emotional support to young people with cancer, and report positive experiences, but it is clear there is a postcode lottery when it comes to access to higher level, teenage and young adult specific psycho-oncological support.

Resource could be better managed by investing in preventative psychological support, wellbeing, resilience up front to reduce the need for end of treatment interventions, and improve overall wellbeing