Adult wards 'traumatise' young people with life-limiting conditions

The study into transitions between children’s and adult health services for young people found that professionals are often ill equipped to support 16- to 25-year-olds with life-limiting conditions.

It found that young people’s experience of adult in-patient wards were negative and sometimes traumatic because of a lack of staff expertise in childhood conditions, a failure to involve parents in decision-making, the disturbing nature of other adult patients’ health or behaviour, boredom and social isolation.

There are at least 49,000 young people under 19 living with a life-limiting or life-threatening condition in the UK. The number of 16- to 19-year-olds living with such conditions has almost doubled in the last decade.

The report, based on the findings of a two-year research project into support for 16- to 25-year-olds with palliative care needs, calls on government to make sure that the NHS and social care reforms do not further fragment transitions for young people.

This is because specialist palliative care services for children and young people are set to be commissioned nationally by the NHS Commissioning Board from April 2013, rather than locally, alongside broader children and young people’s health services.

The report also urges professionals working in adult health services to acknowledge that many young people may still want to involve their parents in decision-making, and warns that the support needs of bereaved parents must be addressed.

Lizzie Chambers, development director at Together for Short Lives, said children’s and adult’s services must do more to ease the transition for young people.

“Reaching adulthood should be a time for celebration, yet it is a milestone feared by many families of young people with life-threatening and life-limiting conditions,” she said.

Simon Chapman, director of policy and parliamentary affairs for the National Council for Palliative Care, added: “It is a cause for celebration that many young people with life-limiting conditions are now able to live for longer and are progressing into adulthood.

“However, this brings with it the challenge to ensure that their transition from children’s to adult services is well co-ordinated and smooth, and that it is not left until they are approaching their 18th birthday before they are involved in discussions about plans for their care as an adult.”

Heather Richardson, national clinical lead at Help the Hospices, said: “The transition from teenage years into adulthood is often a difficult time, but a life-limiting illness will undoubtedly complicate the normal challenges that young people face, such as gaining independence, starting and maintaining relationships, and accessing education and employment.

“Our focus must now be on helping them to live well by providing care and support that addresses their individual wishes and needs, and hospice care can help make this happen.”