Teenage Cancer Trust's response to the Major Conditions Strategy
The Government’s interim Major Conditions Strategy was published today, outlining Government plans for cancer care along with five other conditions: cardiovascular diseases, including stroke and diabetes; chronic respiratory diseases; dementia; mental ill health; and musculoskeletal disorders. This is an interim plan, with the full plan expected to be published at a later date.
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You are viewing: Our response to the Major Conditions Strategy
Kate Collins, Chief Executive of Teenage Cancer Trust, said: “We welcome the publication of the interim Major Conditions Strategy, particularly the commitment to supporting faster diagnosis and exploring how people experiencing rare forms of cancer can be better supported – both of which are especially relevant to young people with cancer.
“Teenagers and young adults with cancer have unique needs that differ from those of children and older adults, and require a specialist workforce with expertise as to how to meet them.
“47% of teenagers and young adults diagnosed with cancer had to see their GP three or more times before referral – the most out of any age group. Cancer treatments can be less effective for young people as physical changes and rapid growth during puberty and young adulthood can negatively affect how the body metabolises chemotherapy, for example. And while clinical trials help researchers find new and better treatments, accessing them can be harder for young people as trials are not always designed with their needs in mind and sometimes have age limits which prevent young people from participating in them.
“We are glad to see that the interim Major Conditions Strategy recognises that young people with cancer are often affected by rarer forms of the disease, and that this can create challenges with faster diagnosis. The full plan must be comprehensive in terms of how to meet these challenges, and Teenage Cancer Trust would welcome any opportunity to work with the Government and the NHS to ensure the unique needs if young people are met.”
We welcome the publication of the interim Major Conditions Strategy, particularly the commitment to supporting faster diagnosis and exploring how people experiencing rare forms of cancer can be better supported – both of which are especially relevant to young people with cancer.
What have Teenage Cancer Trust recommended to the Government?
With our own research showing that less than half of young people aged 18-24 can identify any of the five most common signs of cancer, we called on the Government to build on our ‘Best to Check’ campaign and our young person-centred approach to develop a public awareness campaign for cancers affecting young people.
NHS England has an existing target of enrolling 50 percent of young people with cancer in clinical trials by 2025, and we emphasised the need to streamline bureaucratic requirements, invest in the research workforce and in technology to allow clinicians to readily identify suitable trials for their patients.
With 47 percent of teenagers and young adults reporting having three or more consultations with their GP before being referred, we called on the Government to introduce mandatory training for GPs and healthcare professionals on the most common signs and symptoms of cancer in young people, building on existing NICE guidelines and the GP awareness training tool co-produced by Teenage Cancer Trust, Young Lives vs Cancer and the Royal College of GPs.
Our #NotOK campaign called for every young person to be able to access expert support from a trained psychologist, a policy eventually included in the TYA service specifications published in 2023.
We showcased our Integrated Assessment Map (IAM) as an age-appropriate tool to support professionals and young people in assessing their needs, and recommended it be endorsed by NHS England as the single TYA Holistic Needs Assessment tool for use across all health services.
Currently, the NHS doesn’t use a consistent standard for grouping young people into different age brackets. We called on the Department of Health and Social Care and NHS England to introduce a national standard for data reporting on this group (0-5 years; 6-10 years; 11-15 years; 16-20 years; 21-25 years), and to regularly publish data on areas relating to outcomes and experiences.
We appealed to the Government and the NHS to work with us to further develop the specialism of TYA cancer care, supported by a sustainable long-term plan to recruit, train and retain a dedicated workforce. The NHS Long Term Workforce Plan published in July contained limited details on the cancer workforce, but it will be reviewed every two years, giving us more chance to influence Government and NHS decisionmakers in the years to come.
Access to fertility preservation treatment, and subsequent funding for medium to long-term cryopreservation storage, varies, so we urged the Government to commit to further research to understand the scale of the issue and ensure young people with cancer have appropriate treatment offered.
47%
The percentage of teenagers and young adults diagnosed with cancer who had to see their GP three or more times before referral – the most out of any age group
Next steps
Submitting responses to Government consultations gives Teenage Cancer Trust the opportunity advocate for the distinct needs of young people with cancer to be prioritised and addressed through Government policy. We will build on our evidence and recommendations in our ongoing and future campaigns, (including around access to expert psychological support, increasing the number of young people enrolled in clinical trials, and providing the teenage and young adult workforce with the resources and environment they need), and will continue to engage with Government, Parliamentarians and NHS leaders on the issues we have raised.
References
52.9% of 16–24-year-olds spoke to a primary care professional only once or twice before their cancer diagnosis (NHS National Cancer Patient Experience Survey 2022): https://www.ncpes.co.uk/latest-national-results/
Clinical pharmacology in the adolescent oncology patient: https://pubmed.ncbi.nlm.nih.gov/20439647/
Teenagers and young adults have lower rates of participation in clinical trials than younger children, for reasons including arbitrary age criteria and trials that are designed and communicated without accounting for the unique needs of the age group. See: Fern LA, Lewandowski JA, Coxon KM, Whelan J; National Cancer Research Institute Teenage and Young Adult Clinical Studies Group, UK. Available, accessible, aware, appropriate, and acceptable: a strategy to improve participation of teenagers and young adults in cancer trials. Lancet Oncol. 2014 Jul;15(8):e341-50. doi: 10.1016/S1470-2045(14)70113-5. PMID: 24988937.