Providing a better experience for young people with cancer
Youth support coordinators provide vital help to young people with cancer, from diagnosis until up to two years post-treatment
Youth support coordinators provide vital help to people with cancer in the 13-25 age group, from diagnosis until up to two years post-treatment
- Coordinators get to know young patients and understand their issues
- Aim is to give them positive memories from a difficult period in their lives
- They bridge the gap between hospital, home and community services
Cancer is the leading cause of non-accidental death of young people in the UK, and seven teenagers and young adults are diagnosed with the disease each day.
The need for specialist practitioners and services to work with patients aged 13-25 has become increasingly recognised, and charities, working alongside the NHS, have been integral in developing specialist care for young people.
The Christie NHS Foundation Trust in Manchester, one of Europe's leading cancer centres, has one of the most modern and well-equipped dedicated teenage and young adult units in the country, funded almost entirely by The Christie charity.
It includes two dedicated social spaces, a gym, a music room, accommodation for parents and space to chat informally with specialist staff.
The unit is also supported by charities such as CLIC Sargent and the Teenage Cancer Trust, which have championed specialist roles to support young people and their families.
The Teenage Cancer Trust advocates a model of care involving age-appropriate units, specialist nurses and youth support coordinator roles to support young people with a cancer diagnosis.
Coping strategies, lifestyle choices
A youth support coordinator has training and expertise in communicating and working effectively with young people, and is able to understand their developmental status and the issues affecting them.
‘We act as key workers for young people and their families, ensuring they feel supported from an early point in their cancer experience’
Coordinators provide perspectives on coping strategies, behaviours, lifestyle choices, emotional development and life stage that helps multidisciplinary teams work more effectively with each young person.
They strive to make sure the NHS has a stronger focus on young people, and are advocates, informal educators and trusted members of the team who often get to know the young person, for whom they are in an equal partnership and who they help from becoming socially isolated from their peer group.
From diagnosis to post-treatment
At the Christie's Palatine Treatment Centre, the teenage and young adult team includes five nurses – three of them funded by Teenage Cancer Trust – and four of the trust’s youth support coordinators, including one for outreach and one dedicated to the care of young people going through proton therapy.
‘The skill of the teenage and young adult nurse specialist is to give a voice to a young person when all the literature tells us they will be feeling out of control’
These important roles work together to support young people from the time of their diagnosis until up to two years post-treatment, alongside physiotherapists, occupational therapists, a multidisciplinary team coordinator and social workers from cancer charity CLIC Sargent.
The team act as key workers for young people and their families, ensuring they feel supported from an early point in their cancer experience, and they help to bridge the gap between hospital, home and community services. Sadly, this can involve support when treatment is no longer appropriate and the young person is facing the end of life.
Teenage and young adult specialist nurses often work closely with site specialist colleagues, carrying out ongoing formal and informal assessments, to provide age-appropriate support in hospital and through home visits alongside diagnostic specialist support.
‘Nurses support young people with education and vocation issues to ensure that treatment is not seen in isolation but alongside the other important issues in their lives’
The team has an understanding of the impact of a diagnosis and resultant treatment on the life of the young person and their family. They attend consultations with young people and carers and help to address queries from them or their clinicians.
The skill of the teenage and young adult nurse specialist is to give a voice to a young person when all the literature tells us they will be feeling out of control. By advocating with and on behalf of young people, the specialist helps to ensure better compliance with treatment and check that planned treatment is what the young person wants.
Other important issues in their lives
Nurses support young people with education and vocation issues to ensure that treatment is not seen in isolation, but alongside the other important issues in their lives.
Youth support coordinators are specialists in the care of young people. They understand their development status and coping strategies, how to communicate with them, how to engage them in services, how to support them in the most age-appropriate way, and how to walk alongside and advocate for them.
They can advise teams on how best to work with young people and ensure their voices are heard in the NHS.
Teenage Cancer Trust nursing and support model
- Nurses and youth support coordinators offer age-appropriate practical and emotional support to young people diagnosed with cancer
- Focus is on caring for young people and their family holistically – looking at all aspects of a young person’s life
- Support offered is multifaceted and wide ranging, including one-to-one sessions, group work, liaison with outside agencies, home visits, disease- and treatment-related support, peer support and end of life and bereavement support
- Ultimately, nurses and youth support coordinators have the aim of minimising the impact of a cancer diagnosis, improving outcomes and ensuring young people have a voice and, where possible, shaping their treatment pathway
Not just a patient
For the young person, a youth support coordinator is also someone without an agenda – there is no medical aspect to the role. Coordinators don’t fill in forms, give injections or address any physical or emotional issues in a formal way.
Instead they can develop informal relationships to offer comfort and support, giving young people opportunities to be an individual, not just a patient.
‘Young people can often feel lost in an NHS that is geared towards paediatrics and adult patients’
Youth support coordinators provide practical help and informal emotional care via one-to-one support, residentials (therapeutic trips away from the hospital that involve overnight stays) peer support activities and targeted workshops.
Opportunities to achieve goals
Young people are brought together and provided with opportunities to achieve goals and take part in age-appropriate events and activities with others who are going through similar experiences.
Youth support coordinators provide opportunities for young people to retain their identity as an individual, leave treatment with positive experiences and feel supported by specialist staff during and after their diagnosis.
Young people can often feel lost in an NHS that is geared towards paediatrics and adult patients. The cohort of patients aged 13-25 require their own specialism.
A sense of normality
To care for young people holistically, the NHS needs to recognise the value that dedicated nurses and youth workers can bring to multidisciplinary teams. We ensure young people have a choice and a voice in cancer services.
‘We can’t change the diagnosis, the treatment or the outcome, but we can provide a better experience and some positive memories from a very difficult period in their lives’
The young person and their family are supported to retain a sense of normality and self while receiving age-appropriate social and emotional support from expert staff.
The core focus of a youth support coordinator is not the cancer, the diagnosis, the treatment or the drugs – it is who that person is.
Biggest challenge of their young lives
What do they need to get them through the biggest challenge of their young lives? What are their dreams, hopes and aspirations? Who are the important people in their lives? What are their coping strategies and how do we enable them to continue to develop and thrive when they become a cancer patient?
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By addressing wider issues than their diagnosis, the teenage and young adult team provides individualised care with improved clinical experience that hopefully allows the young person to move on positively to their new ‘normal’.
Our motto for the role is ‘we can’t change the diagnosis, the treatment or the outcome, but we can provide a better experience and some positive memories from a very difficult period in their lives’.
Shy girl learned to cope
‘Sandy’ was 17 when she was diagnosed with acute myeloid leukaemia.
She was well-supported by her family, but described herself as socially shy and having only a small group of friends.
Sandy coped well with her treatment. She had chemotherapy and a bone marrow transplant. However, her body image was significantly affected.
Throughout her long stay as an inpatient, Sandy and her family were supported by a youth support coordinator and a key worker nurse.
Sandy was reluctant to take part in the age-appropriate events that were available for young people on the ward, but through one-to-one sessions with her youth support coordinator she felt encouraged to take part in workshops, quizzes and competitions, such as art, music, poetry writing and table tennis.
Sandy’s key worker nurse spent significant time providing emotional support to the family both at home and in the hospital. They looked at complex relationship dynamics and used mediation and advocacy when needed.
Sandy’s nurse also worked with her college to ensure she could engage in her studies, which helped her to obtain the grades needed to get into university.
Ready for her prom
The youth support coordinator worked with Sandy to reassure her and get her ready for her prom – organising wigs and encouraging her to go along – to ‘get back to normal’.
After treatment, Sandy was supported to take part in a ‘summer of fun’ programme that involved six weekly sessions for young people. Sandy also gained the confidence to go on a five-day outdoor residential trip. Such trips, which involve overnight stays away from the hospital, aim to get young people to trust in their bodies and their abilities after treatment.
Now doing well
They can include sailing, abseiling and canoeing, or pamper breaks, as well as programmes focused on life after treatment, such as late effects, managing anxiety, financial implications and looking after yourself.
Sandy’s nurse continued to have regular catchups with her and her mum, which they found useful, as they needed help and reassurance.
Sandy went to university and is doing well.
Lorraine Wright is Teenage Cancer Trust youth support coordinator (team leader) at The Christie NHS Foundation Trust Palatine Treatment Centre
David Wright is Teenage Cancer Trust lead nurse based at The Christie NHS Foundation Trust
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