Improving Transition for Young People Fund

St Oswald’s Hospice, based in Newcastle, developed a pilot service to enable collaborative working, including involvement of GP’s, supporting young adults with palliative care needs.

The pilot service began in early 2019 and involved the introduction of an annual assessment clinic for young adults and facilitate closer working relationships between the Hospice and GPs to support patient care and ultimately improve their quality of life.  The new clinic, based at St Oswald’s Hospice, saw young adults with complex conditions attend an annual assessment from palliative care specialists at St Oswald’s. The assessment was completed in two parts, firstly to assess physical and psychosocial symptoms, looking at symptom management and medication, as well as ensuring a young adult has an emergency healthcare plan. The second part of the assessment involved discussing and setting life goals and future planning.

The initial focus of the pilot was young adults living with neurodisability and was delivered in partnership with Newcastle Gateshead Clinical Commissioning Group (CCG).

The Covid-19 pandemic has a significant impact on the project with the closure of clinic space and the furloughing of key staff.  Although referrals to the project were lower than expected, there has been some important learning from the project (see below) it is hoped that these lessons will continue to inform support offered to young adults at transition across the Newcastle area.

Learning and Recommendations

Project Evaluation

Making friends, having relationships and exploring sexuality is an important part of the transition to adulthood for all young people. However, young people with life-limiting or life-threatening conditions have had limited opportunities to learn about relationships and sex.

Talking about sex is often seen as private and taboo and many young people never have the opportunity to talk about it. Family members, carers and practitioners often feel ill-prepared to discuss sex with young people.

The ‘Talking about… sex and relationships: Young people speak out’ project started in early 2019 and aimed to support young people and practitioners with this often neglected but important area of transition into adult life. The project, led by and for young people with The Open University Sexuality Alliance and Hospice UK, has developed a range of Open Educational Resources (OERs) that will facilitate young people to have conversations about sex, intimacy and relationships with their family, carers or professional support staff.

The project has also equipped health practitioners to provide better support to young people on this invisible topic through knowledge, resources and a better understanding of the views and experiences of young people themselves.  “Talking about Sex: A booklet for young people with life-limiting or life-threatening conditions and their carers”  is available to download here.  If you would like hard copies sent to you, please email info@togetherforshortlives.org.uk.

This project has now concluded and the final evaluation report is available here.

This project, lead by the Royal College of General Practitioners, began in early 2019 and will support GPs to make improvements to the service they are able to offer to seriously ill children and young adults, and will ensure good communication between the primary care team, patients, carers and secondary care professionals.

The aims for this project are to:

• Engage with key stakeholders, including young people and their families, to design the right solutions for improving care within the primary care environment
• Develop processes that will integrate the care between health professionals and the community and providing safe and supportive outcomes for the young person
• Inform and support GPs and the wider primary care team by providing them with the training and tools they require
• Support signposting
• Engage and link GPs and the wider primary care team with wider support services and programmes in their locality, supporting young people into those services and improving outcomes

The Covid-19 pandemic had a significant impact on GP capacity to engage with the project activity during 2020.  As a result, the project has been extended until June 2021 to enable sufficient time for the creation and dissemination of the e-learning materials.  Two new e-learning modules will be launched via webinar in late July 2021.

The Transition Hubs project began in early 2019 and aims to provide a holistic one-stop point of contact where young adults can receive support with transition from paediatric to adult palliative care. Young people with palliative care needs are able to access a ‘Hub’ hosted at their local adult hospice.  The Hubs provide clinical advice alongside more holistic support around independence and encourage social peer group support.

Hubs are facilitated by a transition nurse who provides emotional support to families at Hubs and home. Social media is used to enable peer support and home visits undertaken (when possible) to offer reassurance and help build confidence.

Study sessions are held to encourage skill building for adult palliative care colleagues.

Although the Covid-19 pandemic meant that Transition Hubs were unable to take place in person at times, networking across agencies and support offered to young adults by the transition nurse continued throughout.  We are delighted to report that, as a result of this successful pilot, this model of working and the transition nurse post has secured alternative funding to continue.  IT4YPF funding ended in September 2020.

The paediatric, neurorehabilitation and palliative care teams at South Tyneside and Sunderland NHS Foundation Trust collaborated with the learning disability and mental health teams at Cumbria, Northumberland, Tyne and Wear NHS Trust and Sunderland Parent Carer Forum to review and improve care pathways for disabled young people as they transition to adulthood and adult services.

Their aim was for all disabled young people and their families to receive appropriate care at every step throughout transition to adult services, and on an ongoing basis throughout their adult lives. Every step of the way, they’ll have access to a team with the right expertise to address every need.

You can read more about the project in this blog by Dr Ellie Bond, who is working on the project.

The Covid-19 pandemic meant it was unfortunately not possible to deliver the planned communication skills training to school staff although.  However,  there is still an appetite to do so once restrictions are eased.

The project team have reflected together on local pathways and share their report here. This includes:

• Recommendations for best practice
  Detailed data captured at the point of care about the needs of young people accessing the various care pathways
  Tools that others may consider using in their local areas.

St Elizabeth Hospice have an ambition to be a regional provider for young adult hospice care in East Anglia. This project began in early 2019 and aims to improve the transition experience of young people in Suffolk by providing additional resources and bringing organisations together to enable increased partnership working.  The team hope to transform transition experiences, enabling improved health and well-being outcomes for young people and their families.

Working in partnership with other key organisations St Elizabeth hospice has appointed a transition coordinator, ‘key worker,’ for young people aged 14-19 and their families to plan, coordinate and support seamless transition across multiple services. The transition coordinator  actively leads transition planning from children’s to adult’s services both within Ipswich Hospital, social care and community health teams, as well as between children and adult hospice services. Following NICE guidance and recommendations from transition research this project will pilot and evaluate the effectiveness and economic case for the transition coordinator role, with the potential to provide a business case for this role to continue in Suffolk and be rolled out in other areas.

The project will also provide preparation-for-transition workshops for young people and their families, providing practical information throughout the transition journey.

During the Covid-19 pandemic the physical space used for project activity needed to become an temporary space for adult patients.  Support for young people continued ‘virtually’, with emergency respite available as needed.  Despite disruptions during 2020, the transition coordinator is now back in post and the delivery model is informing planning for how transition may look across the whole of Suffolk in the future.

The Pathways Clinic project, run by the Royal Devon and Exeter Hospital Trust, began in early 2019 and will ensure that young people have continuity of care.

The current model of care for young people with complex medical needs at 18 years of age is to be discharged from their Paediatric Consultant to the care of their GP.

The Paediatrician has usually known this young person and their family for a number of years, possibly from infancy, and they have often been the family’s first port of call when a medical issue has needed discussion or advice.  The Paediatrician is a referrer to other specialties as necessary and these internal requests are seamless and timely.   Whilst an inpatient, the young person is reviewed by their Paediatrician and communication between parents and staff is maintained with the Paediatrician remaining the “lead” professional in the young person’s care.

When care is transferred to the GP at 18, this specialist contact is lost.

By transferring care from a Consultant Paediatrician to an Adult Physician the team hoped that the ‘Umbrella of Care’ will continue including at times when admission to hospital may be necessary.   This will provide proactive care rather than reactive.

The IT4YPF project built upon an earlier pilot project involving 6 young people that had received positive feedback from the families involved.  Funding from Together for Short Lives has enabled it to grow from strength to strength with more young people benefiting than previously  expected.  We are delighted to report that following submission of a successful business case to the health Board, funding has been secured to ensure that the Pathways Clinics are ‘mainstreamed’ and stay in place as the preferred delivery model to support young adults through transition to adult care.

The Council for Disabled children have developed a bespoke programme of workshops led by parents of young people with palliative care needs, supplemented by accompanying e-learning modules.  The project began in early 2019 and builds upon the successful Expert Parent Programme for children with SEND.

The programme helps other parents looking after seriously ill young people to advocate on behalf of their children and navigate the confusing landscape of support that families often face.

Fortunately, the majority of the face to face training had taken place by the time the country went into lockdown with the Covid-19 pandemic.  In response to not being able to meet in person, the delivery team have worked hard to translate the training materials into a format that is suitable to be delivered as on-line modules.

An evaluation of the project is available here.

In partnership with St Leonard’s Hospice for adults, Martin House Children’s Hospice’s project looked to enable young people to build their resilience and develop skills as they move from the teenage world to the adult world. Working collaboratively with young people, Expanding Worlds helped identify the areas of biggest challenge and need for them in their move into adulthood, across physical health, emotional well-being, social, housing needs, work and leisure. The project partners supported young people to develop their own direction for the sessions during the project, giving them the opportunity to learn, implement and develop their self-management, proactivity, negotiation skills and resilience.

At the end of the project (early 2020), the young people’s group decided that they would like to try to continue to meet independently as a group named ‘Striding Forwards’.  This was a significant step and demonstrated how far their confidence had developed during the project.  Unfortunately, the Covid-19 pandemic meant that members of the group needed to shield and were unable to meet.  Although momentum for Striding Forwards was lost during 2020, there is a possibility that their plans will materialise post pandemic.

Learning from the project is captured in their Evaluation Report.

Starting in October 2017 and ending in March 2019, Futures, led by Volunteering Matters, supported 12 young people aged 17-19 across Acorns Children’s Hospice sites and special educational needs schools in the West Midlands. It supported these young people living with complex and life-limiting illnesses and conditions to recognise their skills and positively shape their futures through mentor support. The mentors worked alongside the young people to engage them in skills development, volunteering and social action, and work placements.

You can read a update from the project here, and the full evaluation report.