Improving Transitions for Young People Fund

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

Many young adults (aged 16-25) with palliative care needs move on from paediatric teams to rely on their GPs to lead their treatment.

The pilot service began in early 2019 and involves 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, will see young adults with complex conditions attend an annual assessment from palliative care specialists at St Oswald’s. The assessment will be 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 involves discussing and setting life goals and future planning.

This aims to enable GPs to confidently support these young adults, and for the young adults to have increased independence, advance care planning, good symptom management and an easier transition to adult palliative care teams when this is needed.

The initial focus of the pilot is young adults living with neurodisability.

The pilot will be delivered in partnership with Newcastle Gateshead Clinical Commissioning Group (CCG).

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 aims 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 will also equip 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.

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 ensure we 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 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 will be 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 coordinator who will provide emotional support to families at Hubs and home. There will be a social media group to enable peer support and home visits to offer reassurance and help build confidence.

Regular study sessions to encourage skill building for adult palliative care colleagues are built into the model.

The paediatric, neurorehabilitation and palliative care teams at South Tyneside and Sunderland NHS Foundation Trust are collaborating 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 is 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.

The project started in early 2019 and aims to:

• Describe transition care pathways for disabled young people with complex needs in Sunderland and evaluate families’, carers’ and professionals’ experiences of these
• Bring conversations about death, dying and end of life wishes to life, using the enabling workshop model already used and positively evaluated with people with learning disabilities
• Produce a suite of resources to underpin the transition journey, including a webApp called Needs4Pathways, which calculates complexity of needs, identifies the correct SNOMED-CT codes for each need and provides an output which lists all needs, the SNOMED-CT codes and makes suggestions about which care pathway to consider for the young person as they transition to adulthood and adult services
• Empower teams in other areas to pilot the resources and evaluate their effectiveness in other settings
• Review, revise, publish and promote the resource toolkit as a national exemplar of good practice

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

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 will actively lead 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.

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 we are hoping 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 identified Doctors are Healthcare For Older People (HFOP) Consultant Physicians who are experienced in looking after adults with a range of complex needs and movement disorders. In addition, they are also experienced in discussing sensitive issues, palliative care, deputyship and shared decision making with families.

We have run a pilot project involving 6 young people, feedback from the families involved has been extremely positive and we are excited to be able to extend this project.

The Council for Disabled children are developing 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 will help 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.

In partnership with St Leonard’s Hospice for adults, Martin House Children’s Hospice’s project will 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 will help to 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 will support 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.

Charlotte lives in North Yorkshire, and has been supported by Martin House for five years:

“Life can be pretty strange and quite a challenge at times. In December last year my mother died suddenly and then in February this year my father died of heart disease.”

“I am 22 years old and have lived happily with them both all my life. They were remarkable parents, fun, loving and kind – the best. Fortunately I have a great brother and sister-in-law, niece and nephew. They live in a small house, but they took me into their home for seven months, until something could be sorted out for me. I have ataxia telangiectasia, a rare degenerative condition that affects the muscles, co-ordination, balance and the immune system. I have problems, but I am doing pretty well considering. I have never lived on my own and it is hard – but also exciting. I am on a steep learning curve. It is quite lonely at times, but my two amazing dogs, Baby and Prince, help me get through.”

“This new project is perfect. I have been involved in its development from the beginning. The voices, wishes and needs of the young people are central; it is not just something that is being imposed on us. There is so much to learn about life, and the plan is that we do it together.

“You never know what is round the corner, so make the most of your life while you can.”

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 the latest update from the project here, which includes:

• Planning volunteering and work experience placements for disabled young people and;
• Work experience or placement opportunities – factors to consider.