In April this year St Oswald’s Hospice in Newcastle launched a pilot clinic for young adults aged 16 – 25, with the aim of closing the gap that exists in palliative care services for young people transitioning into adulthood. We asked Dr Jo Elverson about the services the clinic provides and how care provision for young people needs to improve.
Why did St Oswald’s decide to launch this clinic?
St Oswald’s has been offering a short-break service to young adults in the North East for the last eight years, and over the years families have called their services a lifeline. The new service offers a different kind of support and will extend their services to meet the needs of a greater number of young people.
We identified that young people with complex needs often have limited experience of seeing their General Practitioner before transition as their care is well managed by the paediatric teams. During transition however, GPs play a critical role in supporting these young people, to hold an overview of the young person’s medical needs, and to be a source of advice, signposting and holistic care. GPs sometimes lack experience or confidence in caring for these young people so the new clinic aims to support GPs’ and build their confidence.
Although we have only recently launched our clinic we have been delighted at the interest and encouragement from so many health and social care professionals, including 60 healthcare professionals and influential figures from across the region who attended the project’s launch event. There is a real appetite to work together to improve support for our young people. We have only seen a few patients so far, but hearing their stories has demonstrated the challenges they face and has confirmed to us that our clinic will be meeting genuine needs.
What services does the clinic provide?
The clinic is run by our specialist multi-disciplinary team who has a huge amount of experience working with young adults who are living with life-limiting illness.
We work with the young people and their families to assess their current needs and identify any life goals they have for the future. We also help them to think about and plan ahead for times when their health might deteriorate. This involves working closely with their GP and the other professionals involved in their care, to make sure that their needs are being met and to give them the support they need to achieve their goals.
What challenges has it faced?
Our biggest challenge is in spreading the word and making sure that the clinicians and patients who might benefit from our clinic know about it and the support we can offer. We believe there are many more young people out there who have unmet needs and would value this service, and we are making every effort to reach out to them and the professionals who are supporting them.
What are the main issues young people face when they transition from childhood to adulthood?
We know that the priority for many young people is to get on with living their lives, with all the challenges and opportunities that come along with becoming an adult. Health may seem less important to them at this time when they are juggling major changes in their physical, social and emotional worlds.
For young people with a long term health condition, transition may involve getting to know new adult services and health and social care professionals, which can lead to uncertainty as it takes time to build confidence in a new team. Young people and their parents tell us they fear transition and feel very vulnerable at this time. One aim of our new clinic is to offer some continuity during transition which will address some of the uncertainty.
What challenges do clinical staff face when caring for young adults?
The aim of transition is to empower young people to reach their full potential as adults. This can be challenging as it involves a broad range of skills and experience in working with this age group. Many young people who access palliative care services have lived with very rare conditions for a long time and have physical symptoms that are unfamiliar to adult clinicians.
It can be difficult to identify when a patient is deteriorating and to what extent they would benefit from intensive treatment. We find that the process of documenting a plan for emergencies is a helpful opportunity to introduce conversations about wishes for future care, and to talk about how things might be different when the young person is dying.
What needs to improve about care provision for young adults?
In recent years, there has been increasing recognition that adolescents and young adults are a group with unique needs and vulnerabilities, and much work has gone into researching those needs and setting standards for good practice.
There are some great resources that have been developed to support clinicians in providing developmentally-appropriate healthcare and enabling young people to begin to take responsibility for their health and the decisions they need to make around this. As the unique needs of this age group are being recognised and acknowledged more, I am hopeful that clinicians will become more confident in providing people with the support they need.
The clinic has been funded by the Together for Short Lives Improving Transitions for Young People Fund. For more information visit St Oswald’s Hospice