Haemnet has been funded by the Burdett Trust for Nursing to undertake a nurse-led initiative to improve transition for young people with bleeding disorders by reviewing current practice, agreeing outcome measures, developing and delivering a patient-led development programme. The project aims to improve transition by securing changes in working practices that enable nurses to drive improved transition outcomes and support patients’ in self managing their treatment regime and their condition.
A collaborative working group of young people with haemophilia, clinical and educational specialists has come together. They shared findings from an initial qualitative research – literature review; telephone survey of patients and parents, and a series of centre visits during which a transition self-assessment questionnaire was trialled. They used these to identify some areas for action, such as:
- Exploring consensus around the developmentally appropriate ages at which boys with severe haemophilia could be expected to have acquired specific knowledge and skills (e.g. self-infusion)
- Developing interactive patient tools for use in clinics and beyond
- Commissioning animations that support development of the knowledge and skills needed for self-management, before, during and after transfer to adult services
- Supporting development of clinicians committed to leading activities that improve transition practice
The literature review looked at current approaches to transition and lessons learned from best practice in haemophilia and other long term conditions, in the UK and internationally. The literature review has now been published in The Journal of Haemophilia Practice, an open-access journal for sharing experience in the care of people with bleeding disorders (http://www.haemjournal.com/external/articles/doi/doi:10.17225/jhp00059).
In reviewing the qualitative research some core themes were identified that support effective transfer from children’s to adults’ services. These are shown below and incorporate themes from the NICE guidance on ‘Transition from children’s to adults’ services for young people using health or social care services’ [NG43] published in February 2016.
|Person-centred||Active process with the young person; developmentally appropriate timing; readiness for self-management|
|Transition planning||Named worker; across transition; strengths based; health plan|
Education & training
|Young person – build independence; Teams – adolescent health|
|Documentation||Clear, concise, consistent; individual as young person; facilitated integrated working|
|Service planning/delivery||Design around the individual; social media and technology; date from service users, education, health and social care|
|Leadership||Collaborative leadership; co-ordinated teams|
|Consent/confidential||Expressed consent; info sharing protocols; capacity issues|
|Safety/safeguarding||Ensure safety / minimise risk at all times|
Findings - so far:
- Transfer to adult services works best when paediatric and adult teams communicate well
- When transition works well, patients barely notice it – it is just part of growing up
- Transition and transfer is often not considered for girls and patients with non-severe bleeding disorders
- Development of patient’s skills for self management of their treatment regime can also support them in the management of their condition
- Development of an outcome framework would be of benefit to all – patients, families and practitioners. At the core of this will be addressing development of the knowledge and skills to manage one’s treatment regime and one’s condition.