Planning the transition from children’s to adult services is vital to meet patients’ needs, says Julie Griffiths
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When Mohammed Karim from Birmingham was diagnosed with osteosarcoma, aged 20, he was treated on an adult ward alongside much older patients.
‘It was lonely,’ he says. ‘I had all these elderly people around me and it was quite depressing.’
When he transferred to a teenage cancer unit, Mohammed says the care was more appropriate to someone of his age. There was internet access, a widescreen TV with DVDs available, PlayStations, Xboxes - and people his own age.
‘It helped me a lot. It was a morale boost,’ says Mohammed, who is now 22.
Mohammed is not alone in finding it an isolating experience to be surrounded by older patients when undergoing treatment for cancer. For those who started their cancer journey in children’s services, it is often even harder.
Debbie Holland, teenage and young adult (TYA) cancer nurse specialist at Addenbrooke’s Hospital, says it is common for patients to find it difficult to move from children’s to adult services.
‘They build up a relationship with a team they trust and there is a fear in having to get to know a new set of people,’ she says.
‘It’s like a healthy young person getting used to a teacher and a class, doing really well, and then being dragged out of it.’
Even the physical environment is different, with the brightly coloured walls of a children’s ward changing to the muted tones of an adult ward.
Ms Holland, who is funded by charity CLIC Sargent, says that planning the transition is vital to meet patients’ needs (see box).
Moving from children to adult services
- Start planning the transition long before it happens so that patients are prepared
- Communicate the ways in which the systems differ so that patients know what to expect
- Allow patients to express their concerns and address them
- Arrange tours of the adult facility and introductions to the healthcare team
- Run multidisciplinary team meetings that include staff from children’s and adult services to ensure all the needs of a patient are met during the transition
Fay Scullion, senior development manager for Macmillan Cancer Support in the East Midlands and north of England, says many young patients would stay in children’s services if they could. In the past, it was common for them to do so.
‘If someone was diagnosed in childhood they’d be followed into adulthood by their paediatric consultant. All their treatment and outpatients’ appointments would be in the children’s and teenage clinics, sometimes until their mid 20s,’ says Ms Scullion.
But as cancer patients and survivors get older, they have different physical, emotional and psychosocial issues than children, which paediatric services can be ill-equipped to deal with. Common issues are infertility, problems with higher education or work and an inability to get insurance for a mortgage or travel because of a cancer diagnosis or late side-effects from treatment years before.
‘It is possible that, if an adult gets a new cancer after having had cancer as a child, that the adult cancer is a consequence of the treatment they had before,’ Ms Scullion says. ‘There’s a need to understand the impact that might have on the patient.’
Macmillan Cancer Support understands that young people have different needs and runs two websites to support them: www.click4tic.org.uk supports teenagers and www.whybother.org.uk helps children.
In 2005, the unique needs of teenagers and young adults were recognised in NICE guidelines. These recommend a shared care approach with child and adult services working together and patients aged
16-24 should be offered referral to a specialist cancer treatment for young people.
Teenage Cancer Trust has nine of these units around the UK, which means that four out of 10 teenagers have access. The charity aims to build enough units so that by 2012 every teenager with a cancer diagnosis will be treated in one.
Last year, the Department of Health issued guidance on commissioning services to improve the outcomes for young people with cancer.
Ms Holland welcomes the DH’s recognition that this patient group have specific needs.
‘We need to create TYA as a specialism in its own right. These patients are much more vulnerable than others. They’re still developing into adults and working out who they are.’
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