Shooting Star Children’s hospice worked with adult hospices in Surrey and South West London to raise awareness of young people’s needs and help improve their transition to adult services.
Increasing numbers of children with life limiting conditions are living into adulthood. However, they and their families might need care and support that adult hospices aren’t traditionally set up to offer.
Five years ago, Shooting Star’s transition team established regular meetings between adult and paediatric specialist palliative care services within Surrey and London (this includes hospice, community, and hospital services in each area). The meetings aim to provide a shared space for professionals to discuss the current and future clinical care and service provision for young people with complex needs, who are likely to be coming into adult hospice care in the next two years.
The Surrey hospices engaged in partnership with Shooting Star are:
Princess Alice Hospice
Phyliss Tuckwell Hospice Care
Woking and Sam Beare Hospice and Wellbeing Care
St Catherine’s Hospice.
The hospices in the London partnership include:
Royal Trinity Hospice
Meadow House Hospice
St Christopher’s Hospice
St Raphael’s Hospice
Demelza Hospice Care for Children.
Outcomes
Meetings take place every six months. Each young person over the age of 16 years is discussed over the course of several meetings, which ensures children's and adults' services have a good shared understanding of their needs, their family set up and the trajectory of their illness. Children’s and adult services have also gained valuable understanding of the local care and services available for their cohorts of patients.
Most cases result in a joint assessment to introduce the adult service. From there, young people and their families often visit their local adult hospice and have joint clinical visits with both adult and paediatric services. For many young people and their family, transition is a daunting time, so the meetings and collaboration are carried out at the pace of the young person and their family.
The meetings help ensure there is consistent messaging, shared goals and clear planning between services, which contributes to a smooth transition process for the young patient and their family.
The London meeting has expanded to involve the Surrey and Southwest London specialist paediatric palliative care team (SPACE) and the specialist team from Evelina Children’s Hospital and Demelza children’s and young adult hospice. The Burdett Trust Regional Nurse Advisor for Young People's Healthcare Transition (London) also attends and provides valuable updates on national and local Transition developments.
Facilitators, challenges and advice
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Key facilitators
All hospice staff are very busy, so the meetings need to be worth their while. Although medical consultants from adults’ and children’s services are working in different environments, they have a common language and understanding of clinical terminology. This makes the meetings very efficient and enables them to learn from each other about the different clinical complexities and service provision for paediatric and adult palliative care.
All young people and their families are introduced to the transition process and verbal agreement is sought before the young patient is discussed at the meeting. Patients and families value having information about adult care provision in advance, and the meeting provides tailored guidance.
Introducing young people and their families to transition early on means they can learn about and prepare for changes in legislation, service provision and process that will apply when they become an adult.
The meetings include updates about young people who have transitioned to adult services. This helps show the impact and benefit of transition work, and provides the opportunity to share learning.
Challenges
Staff turnover can make it difficult to maintain contacts and make sure key colleagues are invited to meetings. However, the network has continued to meet and work together. There has been no specific job planning allocation or funding for this meeting, but it has continued through the good will of all participating services.
This pathway is for young people supported by a children’s hospice who are also receiving specialist paediatric palliative care. However, not all children under a hospice service will meet adult hospice or specialist palliative care criteria. This means this service does not address the needs of a large number of patients who are part of children and young adult hospice services.
Most of the young people discussed at the meetings will be funded by Adult Continuing Care when they transition to adult services. Delays in decision making can make it challenging for hospices to provide clarity about ongoing support and care.
Tips and advice
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Time is precious - make your meetings short, sharp, and focused. Virtual meetings allow for better use of staff time.
Ensure each service has an identified medical consultant who is engaged with transition and attends meetings. This makes it possible to have complex service discussions and trial innovative models of care and service provision.
Recognise that traditional referral criteria and approaches to placing patients on caseload may not be ‘one size fits all’.
Make sure everyone has a clear understanding that this link to adult hospices does not replace GP services for the young person.
We don’t need to be in competition with each other – there is more than enough work for all of us!
Future development
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Shooting Star is working to maximise the impact of this model by spreading the word. More London hospices are being encouraged to join the London meetings, and the Surrey meeting is working to identify the gaps in provision.
Key aims for transition services include:
Identify and share the unmet need for the cohort of children with life-limiting illnesses who are living into adulthood (this includes improving data collection)
Raise awareness of transition work with relevant local and national authorities by ensuring children’s representatives have a seat on relevant Boards at Integrated Care System (ICS) level (this includes key adult Boards such as learning disability boards).
