Chronic pain: the 'daunting' transition to adult services

Research has shown that younger people can fail to attend appointments and become detached from adult services at a crucial stage. They may, for example, be leaving school or home and struggling to gain independence and cope with further education or a work setting. This can have a huge impact on their development generally, mental health and management of their chronic pain condition.

Planning ahead

Patients and families should begin thinking about the issues they might encounter as they move into adult services when the young person is aged from 14 to 15, according to the resource. Typically, services discharge young people to their adult counterparts once they reach the age of 18.

Many young people who experience chronic pain say they find the process quite daunting and the Walton centre's specialist pain transition service has established links with the neighbouring Alder Hey Children’s NHS Trust in a bid to smooth the process for people living locally. 

It is difficult, because you never think anybody could look after your child the way you’ve looked after them. But you have to let ‘em. You have to let them try and do things for themselves [parent in a research study]

The booklet stresses that the exercises offered are low intensity in nature, so that people can incorporate them into their daily lives. 'Physiotherapists will work with you to enable you to return to, or start, exercising in a way you feel safe to continue by yourself,' a section on the physiotherapy contribution notes. Other sections cover the input of occupational therapists, medical consultants and clinical psychologists, for example. 

Family focus

Among series of quotes from young people and their families, one parent said: 'It is difficult, because you never think anybody could look after your child the way you’ve looked after them. But you have to let ‘em. You have to let them try and do things for themselves. And, I don’t, wrap her up in cotton wool to be fair, I do check her a bit more, ring her a bit more but I let her do things.'

Unique status

The Walton Centre says it is the only specialist hospital trust in the UK dedicated to providing comprehensive neurology, neurosurgery, spinal and pain management services. Its booklet also offers advice to parents – who may have been used to playing a central role in arranging appointments and offering transport for hospital visits – on how to approach the changes that will ensue later.

'It is important to now allow them to begin making their own informed decisions as they mature. As this can be a new and sometimes worrying experience for a parent, the team will support you with any questions or concerns you might have along the way.

'It can be difficult to achieve this change if your child initially struggles to adopt these new adult responsibilities, however continued reassurance and encouragement is useful in this situation to improve their confidence as their skills develop over time.'

Expert from 'Carly's story': 'When I was 16/17 I started college and was discharged from the children’s hospital. I started attending appointments at adult services which was in a different hospital. The change in services had been explained to me from when I was about 14, but it was still a big change and I felt quite anxious and scared about it as I didn’t know anyone or what to expect.

'My mum still wanted to come to my appointments with me but it was explained that it would sometimes be better if I was seen on my own to help me build independence in managing my own care. At first I was anxious and worried as I’ve never been a confident person and I found it really difficult to explain how I was feeling physically and emotionally.'

For more information, visit: www.thewaltoncentre.nhs.uk/112/pain-management-programme-pmp.html