St Elizabeth Hospice has worked with young people who have progressive and incurable illnesses to develop Zest, a service that supports them to enjoy life to the full
Following the findings of the STEPP project, which highlighted the need for better support for seriously ill young people in 2012, St Elizabeth Hospice wanted to improve the care it provided for young people aged 14 and over. The hospice worked with their local children’s hospice (East Anglia Children’s Hospice), young people and their families to understand their needs and transform the service.
Through their discussions, they found that the model of care at St Elizabeth was not appropriate for young people:
Services, activities and even the décor were aimed at older adults.
Lack of hospice respite service didn’t meet young people’s needs – for some, the only option was a care home and others couldn’t get a respite break because their needs were considered too complex.
Young people didn’t always meet the referral criteria for adult hospice care, so they weren’t able to access support until their condition deteriorated. They felt isolated once they moved on from the children’s hospice.
They needed anticipatory support to live as full a life as possible for as long as possible, rather than waiting until their health deteriorated before they could access care.
Parents also needed support during transition to understand the legal changes around decision making when their child turns 18.
It was clear that St Elizabeth needed to develop an engaging model of care where young people and their families could meet their peers, get support and stay connected with each other.
Outcomes
Zest began in 2015, and now has around 50 young people on its caseload. The service provides a range of support for young people with life limiting conditions, including:
a monthly social group for young people
a monthly drop-in for families (including parents and siblings)
a weekly day service
weekend short breaks for young people
transition coordinator
outpatient clinics
home visits.
Through these activities, young people and their families can get help in managing symptoms, emotional support, peer support and therapy services. They can also have discussions about advance care planning (ACP) and emergency care planning (ECP), which helps ensure their wishes are met.
Young people have a six-monthly review with a clinician. This enables the hospice team to build a rapport with the young person and their family and understand what deterioration looks like for them. This means they can provide anticipatory treatment as soon as a young person’s health begins to deteriorate rather than waiting for a crisis. It has also enabled the clinical team to develop more specialist knowledge and understanding around paediatric conditions.
Zest has a core team of nurses and care staff, but young adults also receive services from the wider adult hospice MDT including the medical team, emotional-well-being, physiotherapy and occupational therapy.
Facilitators, challenges and advice
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Key facilitators
Children’s hospices, young people and their families were keen to engage with the co-production process. The hospice team didn’t have any specialist knowledge or skills to start with, but they had a strong willingness to learn from others. For example, the team worked with Young Adult champions who provided honest feedback and advice on developments, including for example, coming to the hospice and to ‘screen’ the environment before meetings and events – helping to make it look more appealing and welcoming to young people. They also helped to recruit the new Zest care team.
Partnership working with the local children’s hospice and other children’s services has been key to success. Working together, they have been able to ‘replace the (transition) gap with an overlap’, providing an effective period of shared care between East Anglia Children’s Hospice and Zest for young people aged 14-18 (including monthly groups and short breaks).
This provides young people and their families a bridge for building trust and rapport in transition, and the adult hospice time to learn the complex needs and be ready to fully support young adults by the time they are 18 years old. St Elizabeth Hospice lowered its age criteria to 14 years upwards to enable this to be possible, and have found it essential that there is a period where services can work together.
St Elizabeth invested in a pilot to run a short break service at weekends. The hospice’s day unit (which is not used at weekends) was transformed every Friday afternoon into a welcoming place for two young people to stay. A dedicated care team was employed – and there was an overwhelmingly positive response to recruitment from people who worked in the local children’s services and really wanted to support the service.
Zest has a ‘bucket list’ approach to life, helping young adults achieve the things that are important to them. This has been really important in engaging young people with the service and providing the support they need. So whilst the short breaks do provide respite for parents and carers, there is also a strong focus on giving young people the best stay possible and enabling them to meet their goals. Young people are matched according to what they want to do, such as going out for a meal or learning to cook.
Challenges
The model of care is staff-intensive and although there was initially successful recruitment, there have also been challenges in staffing the service throughout and in the aftermath of the coronavirus pandemic.
It has been difficult to get sustainable funding for the service. Services for young people are not recognised in traditional funding streams, which are divided between adult and children’s services. Zest was eventually able to agree a 60-40 split funding model with commissioners (with the hospice paying 40%).
Tips and advice
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It’s vital to build an ongoing relationship with young people and their families so you can understand their needs. If you wait until a young person meets the referral criteria for adult services, it will be too late for you to gain the knowledge you need to treat their complex condition and provide specialist palliative care.
You don’t need to be an expert in paediatric conditions to set up a service for young people. You can learn so much from working with families.
Make sure every young person you work with has an advance care plan and an emergency care plan.
It’s worth investing in a pilot. This enables you to demonstrate and evidence impact, which supports your case for funding. Disseminate the learning from the pilot widely - this can help you get an audience with commissioners.
You need to be persistent to build up relationships with commissioners - don’t be put off by knock-backs. Care systems in England are now focused on integrated care – transition services are a great example of this!
Use real-life stories to show the impact of having (and not having) a service, and remind commissioners of their statutory responsibilities to provide care.
Be creative and solution-focused when you are negotiating for funding. Suggest ways to split costs so you can meet each other’s needs. Zest was able to negotiate to split the cost of the respite service, using the personal health budget (which several young people in the area had recently become eligible for).
Future development
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Zest has plans to work in partnership with other hospices to develop services in a hub and spoke model. This would see Zest providing specialist respite and reviews, and supporting local adult hospices to provide the palliative and end of life care in their local community.
The hospice would also like to develop a Zest training centre to help to equip and enable adult care providers to meet the complex care needs of young adults.
Zest has now been commissioned to run short breaks for three young adults per weekend (as long as the service can be staffed). North East Essex Integrated Care Board (ICB) and Norfolk and Waveney ICB have also enquired about commissioning Zest services.
