Louise Soanes explains the need for the main political parties to address the specific challenges faced by young people with cancer, particularly around the stark inequality that plagues the health service that serves teenagers and young adults
The need for the NHS to receive urgent attention and funding, so that it can offer patients the best care, has been a major part of election campaigning by all the main political parties. The Conservative, Labour and Liberal Democrat manifestos have all acknowledged the value of our NHS, with each party promising to take measures to address the current demands placed upon it. However, none address the specific challenges faced by young people with cancer, particularly around the stark inequality that plagues the health service that serves teenagers and young adults.
Cancer is the leading cause of death from disease for teenagers and young adults. There are around 2,600 new cancer cases in young people in the UK every year, which equates to around seven every day. Cancer in young people is not caused by preventable factors such as lifestyle choices (like smoking, drinking or sun exposure).
And because it is less common in young people than in older adults it can often be difficult to diagnose as the symptoms can be mistaken for more common ailments. These factors create a complex situation but improving the diagnosis and treatment of cancer in young people is vital so they can receive the best possible care at the most difficult time in their lives.
To improve the experience of young people with cancer from diagnosis, through treatment and beyond, Teenage Cancer Trust wants the next government to focus on three key areas that will improve lives across the UK and help end cancer inequality for young people.
Ending inequality through improved diagnosis and survival
Young people often don’t seek medical advice about symptoms as they can lack knowledge and awareness of cancer. A recent UK study suggested that young people only recognise on average four of 11 cancer risk factors. To compound this, they may sometimes ignore symptoms or are too scared to speak to a doctor about them.
When they do visit a GP, it typically takes young people more appointments to get a referral to see a cancer specialist than it does for most other age groups. It has been suggested this could be because GPs may be less likely to suspect young people’s symptoms could be cancer, as the disease is rare among that age group. These delays can prevent early detection and intervention, and impact on survival.
Earlier this year, several commitments were outlined in the NHS long-term plan to improve diagnosis, survival rates and life after cancer. If the NHS is to meet the ambitious targets set around improving early cancer diagnosis, more needs to be done to ensure that rare cancers are diagnosed rapidly.
The number of people living with a “rare” cancer, is altogether higher than those living with a more common cancer. As young people often have rare cancers, the next government must commit to raising awareness of cancer symptoms amongst young people and empower healthcare professionals to refer patients for further tests more efficiently.
Equal access to specialist services
Young people get a distinct range of cancers and have specific emotional needs due to their stage of development. Receiving age-appropriate care is crucial to improving their experience, being supported in an age appropriate setting and having the right information to make decisions about their care.
It is vital that the next government commits to ensuring age appropriate support for all patients, ensuring they have a better experience
However, in the UK today not all young cancer patients have access to age-appropriate services, such as those provided by Teenage Cancer Trust.
None of the main parties have acknowledged the importance of specialist cancer services for teenagers and young adults, which is often overlooked in healthcare. Being treated in specialist centres can also offer teenagers and young adult cancer patients better access to clinical trials which in turn, can improve their access to innovative care. It is vital that the next government commits to ensuring age appropriate support for all patients, ensuring they have a better experience.
Teenage Cancer Trust will continue its work with policy makers, until every teenager and young adult can access age appropriate support throughout their cancer journey. We are proud to be the pioneers of age appropriate support for young people in the UK but there is still a long way to go.
Fair access to innovative treatments for all
Young people often live with rarer cancers that don’t receive as much funding and scientific research as more common cancers. This has a direct impact on survival rates. Young people supported by Teenage Cancer Trust have told us they want better opportunities to participate in research that has potential to improve their quality of life, or even save it.
NHS long-term plan has committed to increasing teenage and young adult clinical trials participation rates to 50 per cent by 2025. There have been some encouraging steps outlined in the draft Teenage and Young Adult Cancer Service Specifications about how to connect young people better with existing trials, but we also need the next government to lay out a clear plan on how they intend to improve the actual availability of clinical trials for teenagers and young adults.
Teenagers and young adults are significantly under-represented in cancer research. In the UK recruitment rates are between 14-30 per cent in 15-24-year old’s, compared to 50-70 per cent of children. This is not acceptable as we know that when young people have access to clinical trials, this can improve their outcomes.
Under resourcing of clinical trials into the types of cancer that young people get, make providing equal access to innovative cancer treatments particularly important.
Labour has stated that the NHS will lead the development of genomics and cell therapies so that patient can benefit from new cancer treatments. This is positive, and we must ensure that teenagers and young adults will have equal access to these treatments, and the clinical research beforehand.
Recruitment rates in UK are between 14-30 per cent in 15-24-year old’s, compared to 50-70 per cent of children
The Conservatives have committed to extending Cancer Drugs Fund into an Innovative Medicines Fund so that doctors can use the most advanced medicines for people with cancer. This is welcome, as many young people’s lives have been saved or extended because the Cancer Drugs Fund has provided access to treatments that weren’t previously available on the NHS.
Between 2016 and 2018, more than 7,500 patients were able to access treatments that would not have been available if the Cancer Drugs Fund did not exist. Many medications that have been funded by the Cancer Drugs Fund have gone on to gain approval from the National Institute for Health and Care Excellence, securing vital access to life-saving medication for teenagers and young adults with cancer.
Teenage Cancer Trust is committed to improving the experience, recovery and survival of every young person with cancer and better access to innovative medicines would be a positive step towards this goal.
We want to see the next government put meaningful changes in place, that propels young people’s health to the top of the political agenda and ensures that the potentially life-saving commitments made in the NHS long-term plan are acted upon.
It is disappointing that none of the manifestos of the main parties highlight the challenges and barriers faced by young people with cancer as they undergo treatment and beyond. As advocates for young people with cancer, we will continue to campaign on their behalf to ensure an end to the inequalities they currently face.