We respond to consultations on the key issues that impact on young people with cancer across health, education and public health. You can find some of our most recent responses here.

England

  • The Department of Health consulted on their mandate to NHS England - the document that sets out what the government wants the health service to achieve each year. We signed up to a joint response with 10 other youth health charities inlcuding the National Children's Bureau and Association for Young People's Health. Our response argued that the NHS should consider young people when delivering all their objectives, and that there should be some specific aims to improve services for young people in relation to prevention, transition and joined up care. 

  • The Department for Education consulted on new guidance for schools to help them support pupils with medical conditions, including cancer. We responded to highlight the importance of providing holistic support for young people with cancer, and the need to assess support requirements on an individual basis.

  • A new Cancer Strategy was consulted on by the Independent Cancer Taskforce for publication in Summer 2015. We responded that there should be three priorities: to protect teenage and young adult care as a specialism; to improve particular areas along the care pathway (e.g. prevention and early diagnosis); for the NHS and the voluntary sector to work in partnership.

  • The NHS Outcomes Framework details the outcomes and indicators that are used to make ensure NHS England are making improvements to people's health. We responded to a consultation on the Framework refresh to say that there were two areas that are essential to improving care for teenagers and young adults with cancer: 'specialised age appropriate care for children and young people' and a 'continued focus on patient involvement.'

  • An Inquiry was undertaken by the Health Select Committee of the House of Commons into how the NHS is meeting the challenge of making 4% effeciency savings every year. We responded to the consultation by emphasising that we work in collaboration with the NHS to deliver outcomes which are important to young people and aligned with NHS Outcomes and the Mandate and that successful collaboration between the NHS and the voluntary sector must be maintained.

  • An Inquiry was undertaken by the Health Select Committee of the House of Commons into how to improve the experience and care of those in the last 12 months of their life. We responded with two recommendations: more data is needed on palliative care services for young people, and, the unique needs of young people need to be recognised so that they are seen as a distinct group with special needs.

  • An Inquiry was undertaken by the Education Committee of the House of Commons into whether and how Personal, Social, Health and Economic Education (PSHE) and Sex and Relationships Education (SRE) should be taught in schools. We responded that making PSHE statutory would ensure that it was taught and taught well in all schools and also that PSHE education provides the best opportunity to understand issues such as cancer.

Scotland

  • We’ve responded to the Scottish Chief Scientist’s Office consultation on their Health Research Strategy. We welcomed the recent appointment of a Cancer Champion within the Office, and called for more progress to be made in Scotland in driving the development of and access to research for young people with cancer.

  • An Inquiry was undertaken by the Health and Sport Committee of the Scottish Parliament into the transition between paediatric and adult services. We responded to highlight that transition should never be a surprise to a young person; it should be carefully planned and a staged process and there should be constant dialogue from an early stage between young person and practitioner.

Wales

  • In summer 2014 the Welsh Government consulted on their plans for supporting young people with Additional Learning Needs (Special Educational Needs). We responded to highlight the need to ensure provision includes young people with cancer, and that support is available for all young people up to age 25.

  • The Welsh Government asked for feedback on it's draft Rare Disease Implementation Plan. We reseponded that we were pleased with commitments to create an implementaiton group and to supportive collaborative workng but that more needed to be done to ensure that the beste patient experience and outcomes were achieved.

Northern Ireland

  • The Northern Irish Government asked for feedback on its draft Rare Disease Implementation Plan. We responded to highlight that more could be done in respect to patient experience and outcome measures; service specifications and referral pathways; support in diagnosis and public health campaigns.

  • The Service Framework for Children and Young People is published by the Department of Health, Social Services and Public Safety (DHSSPS) and sets standards for services for children and young people. The DHSSPS consulted on their new draft framework. We responded that the strategy should apply for those up to age 25, not 19 as the draft said. We also provided advice on areas such as the importance of age appropriate care and transition.

  • The Department of Health, Social Services and Public Safety issued a review of paediatric services with a view to producing the next 10 year strategy. We responded to highlight the need to ensure that support is available for all young people up to age 25 and that age appropriate services are required for more all those between 13 - 24 year olds, not 16-17 year olds.