Transforming care for young people with cancer

ReACT (Reintegration After Cancer Treatment) focuses on supporting Scottish teenagers and young adults (TYA), aged between 16-25 years, who have recently completed cancer treatment for the first time.

As part of the year-long project, TYA Clinical Nurse Specialist (CNS), Nicola Davison and Project Manager, Simita Kumar are working to embed the completion of treatment summaries and Holistic Needs Assessments into standard practice for all TYA’s completing cancer treatment.

The treatment summaries will include details on what treatment the young person has had and what to expect after their treatment has ended. The age-appropriate Holistic Needs Assessment (HNA), will assess any psychosocial needs and concerns a TYA may have at the end of their treatment. This will help guide appropriate referrals and signposting to other services if required.

Establishing ReACT at a time when many Phase 1 TCAT projects have been drawing to a close has worked to our advantage. We have been able to learn so much from other projects in Scotland, from attending a ‘learn and share’ event where ideas and processes are discussed, to gaining valuable advice from projects who have already used treatment summaries and HNA’s before us.

Like many other TCAT projects, a common challenge in driving the importance and benefits of aftercare in cancer patients during our first six months has been the engagement and ‘buy-in’ by clinical staff and teams.

However, coming into the project after many others are well under way has made it a little easier for us to drive our agenda forward.

Clinicians and nurse specialists have been positive in accepting the benefits of the ReACT project to young people. But as with most things, the perception of having an additional workload can seem daunting, and identifying ‘who’s role it is to carry out HNA’s and treatment summaries has been a common theme.

By identifying patients who have reached the end of their treatment, through our established links with the TYA Multidisciplinary Team, we have been successful in contacting consultant’s and CNS’s directly. Clinicians seem to engage more with if they have a patient who requires a treatment summary.

We have also been able to offer support in completing treatment summaries by initially populating them with the basic patient information and leaving the more detailed clinical information for the Consultant or CNS to complete. Offering to go back to the clinical areas to support staff with treatment summary and HNA completion also seems to help with engagement and ‘buy-in’.

We have been fortunate to have the support of the TYA MDT and the MSN (Managed Service Network for Children and Young People with Cancer), as an avenue to gain access to the information on the TYA population we are trying to reach with the project.

However, the sharing of information has proved a very long process. It has involved Information Governance issues and gaining Caldicott Approval and has been a huge learning curve for all involved. If you are wanting to start a national project involving multiple Health Boards, do your research, and make sure the documents and approval you have cover you for national working and sharing of information. Never presume this will be easy. It is not!

Working with this age range will always have its challenges, but it also provides the biggest rewards.

Through speaking to young people, research and focus groups, we know they want information about their care and to be involved in decisions in what happens to them, in the same way adults do.

Speaking to a young person can seem daunting to some professionals, particularly if they have limited experience. The subjects can often be difficult too, especially around fertility and contraception. However using the HNA is an easy and simple way to encourage professionals to bring up these difficult topics during their clinics and to start a conversation about the young person’s needs.

And, whilst there is a lot of TYA specific information booklets, websites, charities and support networks for during and after treatment, it is knowing where to find that information which can be hard.

The knowledge and experience of TYA CNS’s is invaluable, and there are also TYA specific social workers normally attached to the larger treatment centres. And of course, we are also more than happy to be contacted to assist with advice on referral pathways for this group of patients.

So, what next?

We now have all the completed documentation needed for the project including one generic and five site-specific treatment summaries, with guidance notes on completion. We also have an age appropriate HNA, a patient consent letter and information leaflet, and a GP follow-up procedure in place. Most importantly, we also have Caldicott approval for information gathering.

We have 10 patients now registered on the ReACT project and around 20 more pending. Over the next six months we will collect data to see how many TYA’s have a completed treatment summary and HNA, and allow us to identify the health boards where young people are not receiving treatment summaries or having an HNA.

This will allow us to target those areas and offer additional support or teaching in completing the documents, and identify what we need to do to help teams to complete them through the evaluation.

We already have agreement on the evaluation surveys content to go out, and can already identify some gaps in service that need to be addressed in the future. This could include age specific signposting needed for TYA’s after cancer treatment through a local or national directory of services or providing Clinical Nurse Specialist’s with TYA’s on their caseload with access to information about appropriate referral pathways available for this age group.

By Nicola Davison, TYA Clinical Nurse Specialist