Giving young cancer patients their voice
Over the past few months it has been important to me to participate as your MP in the first inquiry report by the All-Party Parliamentary Group for Children, Teenagers and Young Adults with Cancer into patient experience.
I am very proud that the Listen Up! What matters to Young Cancer Patients report was published last week.
Before compiling the report, research across the area was reviewed, we spoke with organisations including Teenage Cancer Trust and CLIC Sargent, with health professionals, with young people themselves and have now finalised the report, making recommendations to governments.
Although children, teenagers and young adults rarely develop cancer, each year across the UK 4000 young people will receive this diagnosis.
This means that every day, 11 children and young people under the age of 25 are diagnosed with cancer.
This has a massive impact upon their lives alongside that of their families and although progress has been made in terms of care pathways, more can be done to improve patient experience.
For example, we heard that children and young people with cancer often feel left out of the conversation about their own illness.
They also have a difficult pathway towards diagnosis, over lengthy periods which impacts upon their treatment, prognosis and recovery.
Due to their illness, young people with cancer often miss out on vital stages of childhood such as final examinations which they may not be able to re-sit. They may not be able to participate in normal peer activities due to periods of treatment and this can impact negatively upon their physical, mental health and coping.
In 2016, the Scottish Government released its cancer strategy, Beating Cancer: Ambition and Action and established the Managed Network for Children and Young People with Cancer.
This group published Right Diagnosis, Right Treatment, Right Team, Right Place; The Cancer Plan for Children and Young People in Scotland.
This issue is clearly a priority for our Scottish Government and good progress is being made. I will, therefore, be writing to them about our report into patient experience and am hopeful that it can complement their work going forward.
The aim of the report is that young peoples’ voices are central to their treatment.
It recommends that young people receive awareness of cancer signs and symptoms at school; that training for healthcare professionals is mandatory on the signs and symptoms of cancer in children; that pathways are improved between primary care and specialist services; that benefits for young people with cancer are backdated to the date of their diagnosis; that travel assistance is made for families attending treatment ; that young people with cancer who miss examinations are able to re-sit these free of charge after recovery; that mental health supports are available for young people with cancer and that options for fertility preservation are fully discussed with them and their families.
These are the issues that are important to the young people we spoke to and the aim is to work cross party to ensure their voice is heard.
Although progress has been made in terms of care pathways, more can be done to improve patient experience...