For a young person, the transition from paediatric services to adult services can pose problems, worries, frustration, anxiety and all too often a reduction in services.
This can affect the young person's wellbeing in many ways. Their relationship with parents and professionals as well as their physical and mental health may suffer. Many organisations, both statutory and voluntary, have recognised this for years. Many publications, recommendations and research around transition exist.
Why is it then that young adults and their families still feel that their needs are often not met when they move into adult services?
The Scottish Parliament Health and Sport Committee invited a number of experts to give written and oral evidence on the question of transition between adult and paediatric services in the NHS. ASCS was one of the organisations invited to the Committee meeting on 4 March and Dagmar Kerr attended on our behalf.
The broad consensus at the meeting was that the principles of good transition are well known within paediatric services, for example the need for early planning; good communication; a key worker; a person centred approach; self-management support; adherence to GIRFEC principles. There was also agreement that some excellent models of good practice exist. The principles of good transition are not however always applied in adult services. The reasons are complex. Some conditions are not well known to adult physicians, such as conditions which in the past would have resulted in the death of the child at an early age, but where improvements in survival rates are now being made. There is no generic Consultant for Adolescents role in adult services to take over from a paediatrician. Young people who have seen one consultant in paediatrics may now have to see multiple specialists, for example someone with cerebral palsy may have to see different specialists for their knees, spine and feet, and these specialists may be located at different hospitals. The young person's family who supported them through childhood may no longer be taken into account when appointments are made or treatments discussed. Paediatric services will have been able to provide a more holistic approach to care than adult services where the adult environment in many instances may not be age appropriate.
Person centred care is promoted as something that will greatly benefit all patients and the approach is generic. ASCS fully supports the principles of person centred care and is working to ensure that significant focus and energy is invested in age appropriate care for adolescents and young adults. There have been many conferences about transition over the years and much research into the need for better transition care, driven mainly by people from the paediatric side.
ASCS now feels that a more focussed effort needs to be made to engage with adult professionals if we are to create environments and opportunities to support young people at a very vulnerable time. Each Health Board should have a lead person to produce and implement a youth strategy which would include a transition policy. This post would of course need to have dedicated time and resources allocated and be of sufficient seniority to be able to implement policies. The lead person would work towards a set of transition standards which should be set by the Scottish Government. Health boards should be assessed against these standards and would be expected to monitor and evidence their activities.
Another important message from the evidence session is that Health needs to work in close partnership with Social Work, Education and the Voluntary Sector. GIRFEC principles should be applied in the 'adult world'. We should aim to get it right for everyone. Many interesting points were raised at the Health and Sport Committee; various examples of good practice highlighted and many suggestions on how to achieve better transition were made.
Visit http://www.scottish.parliament.uk/parliamentarybusiness/28862.aspx?r=8983&mode=pdf for the meeting transcript.
Duncan McNeil, MSP, Convener to the Health and Sport Committee has now written to Alex Neil, Cabinet Secretary for Health and Wellbeing, asking for his views and an update on progress on transition since the publication of Better Health, Better Care: Hospital Services for Young People in Scotland in 2009. A decision was also taken at the meeting to ask the territorial health boards, to provide details of what arrangements they have in place to support the transitions process. All of this is positive and constructive and ASCS hopes that as a result, the issue of transition from paediatric to adult services might enjoy an increased priority.
