Share your ambitions for the future

A consultant haematologist discusses how the NHS is looking at ways to improve cancer services for children, teenagers and young adults:

NHS England is currently consulting on plans to make changes to the way cancer services for children, teenagers and young adults are organised.

It’s a priority area in the NHS Long Term Plan with good reason.

Our cancer services for children, teenagers and young adults are better than they have ever been and continue to improve – but we want to make them even better, particularly in three key areas.

Firstly, while our survival rates are higher than they have ever been, we know we have further to go to match some other European countries.

Secondly, we know we need to ensure new clinical developments, such as genomic medicine and immunotherapy, are properly integrated into clinical pathways and multi-disciplinary teams so that every child, teenager and young adult is able to benefit from cutting-edge technologies, no matter where they live.

Thirdly, we want every child, teenager and young adult to have an excellent experience of care. At present, we don’t have consistent ways of capturing patient experience for this group, but what we do know suggests there are opportunities to do better.

As the Chair of the NHS England Clinical Reference Group for Children and Young Adult Cancer Services, I have been involved with this work from the outset and I’m passionate about making sure our cancer services work together to offer the best possible care for young people. We’ve spent the past two years speaking to patients, their families, a whole range of clinicians and cancer charities, about how we could do things differently.

One of the key changes is that we will set up properly resourced networks in each area which will ensure the right number of hospitals are working together according to national standards. These networks will be empowered to identify any problems with local care pathways and collaborate to address variation in care across the hospitals in that area – ensuring children, teenagers and young adults are treated as close to home as possible but with prompt access to specialist expertise whenever required.

The networks will work closely with their local cancer research networks to make sure all children and young people have an opportunity to take part in clinical trials if they would like and have chance to donate tissue samples to tumour banks.

We’re also proposing changes to the quality metrics we ask hospitals to report on. The new metrics are vital in understanding where services work well, but we need to collect the right data, that demonstrates patient outcomes and experiences, whilst avoiding unnecessary administrative burden recording information that doesn’t help us to drive improvements.

We’re also putting more emphasis on better psychological support within services, as we know the impact of living with, and surviving, cancer can take a huge toll on mental health.

I want to encourage children, young people and their families, as well as fellow clinicians and colleagues, to share their views about whether these plans are moving in the right direction to achieve the ambitions we all share.

Find out more about the proposed service specifications for Children’s Cancer Services and Teenager and Young Adults Cancer Services, and share your views.

Rachel Hough

Rachael Hough is a Consultant in Haematology and Stem Cell Transplantation at UCL Hospitals and an Honorary Senior Lecturer in Haematology/Transplantation at UCL.

As such, she is now the Clinical Lead of the largest teenage cancer service in the UK and has developed an adolescent-focussed transplant practice.

After completing undergraduate training at Nottingham University, she undertook post graduate general medical and haematology training in Sheffield.

She has also established and chairs the BSBMT Umbilical Cord Blood Working Group and is the Chief Investigator of the 2 NCRI-badged national cord blood transplant protocols. She is a member of the BSBMT Clinical Trials Committee and the CCLG Leukaemia and BMT Special Interest Groups and Coordinates the adolescent and young adult appendix of UKALL2003.