Service development

Strong leadership has been key to the implementation of a network approach of delivering TYA cancer care in the South West if England. Additionally developing a service with a strong emphasis on service development through quality innovation has been essential for success. Current service development initiatives are summarised in the table below.

Impact area: local, regional or national	Description of service development / intervention / project
Local, regional and national	Capital and revenue support from, and close collaboration with, Teenage Cancer Trust to further develop resources both at the Principal Treatment Centre and at designated hospitals within the TYA SW network
Local, Regional and National	Developed by TYA cancer service based at UHBristol in partnership with Macmillan and Teenage Cancer Trust, the IAM portal provides a developmentally attuned digital platform to enable professionals and young people to work in partnership throughout a cancer journey, living with and beyond cancer. The IAM Portal is made up of three components: 1. An electronic TYA holistic needs assessment (HNA): The Integrated Assessment Map (IAM) 2. Online TYA specific information and advice resources 3. The TYA South West Integrated MDT Management System(SWIMMS) This project in now being supported and implemented by Teenage Cancer Trust nationally with continued involvement from the SW team.
Regional	Living Well Programme - Parents/Carers of TYA cancer patients - a project partnership between Penny Brohn www.pennybrohncancercare.org and the South West TYA team to develop and deliver a pilot 'Living Well' programme for parents or carers of TYA cancer patients from the South West region.
Local and regional	Peer support - The regional service continues to actively promoted peer and social activities for young people both at the PTC and equally in each of the designated hospitals. A full evaluation of this regional programme has been undertaken during 2018 and a final report will be available soon. Preliminary analysis has demonstrated the significance to both the young persons and their networkers alongside the benefit to the health care professionals supporting them. A full review and evaluation will be undertaken in 2018.
Local and regional	Continued development of bespoke wellbeing initiatives such as The Way Forward and a complementary service
Regional	REACH Audit - In 2018 we undertook an audit to determine what proportion of young people aged between 16yrs and 24yrs diagnosed (new or relapsed) with cancer who have been 'reached' by the service - The overall reach rate for the first 6 months in 2018 = 96.15% (note: awaiting the final data for quarters 3 & 4 for 2018)
Regional	Place of death audit - The TYA Cancer service identified Place of death as an area of improvement but lacked local data. The service under took an audit of the place of death of patients alongside scoping the accessibility and criteria to hospice care for TYAs aged 16-24yrs.
Regional	Mentorship programme with Macmillan and Princes Trust.

IAM Portal and Help! Website

This project has been developing the IAM portal allows TYA patients to access a specific holistic self-assessment tool through which they can explore and document their needs, and obtain information and support to help with self-management. The Portal will soon be accessible both via a website and as an app, and we have been working with young people and professionals to develop the content, look and feel of these. The Help! Website can be accessed separately. It includes information from many different sources, including video clips of other young people talking about how they managed the concerns they experienced.

Radiotherapy information

You may be told you need to have radiotherapy as part of your treatment. This can feel quite scary and TYA team have been developing ways to be on hand to support you before, during and after the radiotherapy. There is a dedicated Teenage and Young Adult radiographer who can show you around the radiotherapy department and let you know what to expect. There are things that can help you feel more relaxed during the treatment such as listening to your favourite music. If you would like more information, a chat or some young person friendly leaflets then please speak to the youth support coordinator or any member of the team.

Want to be involved?

The team want to make sure that any service development really reflects what people want. This means the team are fully committed to involving patients, families, carers and professionals at every step. If you have any ideas for future projects - lets us know. If you want to know more about how we work with young people in our projects

please click on the links below.

Poster: Co-creation

Presentation: Co- creation & co-design in the development of TYA services

You can contact us at iam@uhbristol.nhs.uk for further information

Past service development projects:

One of our biggest projects was On Target

Macmillan Cancer Support sponsored this three year (2011-2014) programme of work to support us learn more about the aftercare needs of teenagers and young people with cancer in South West.