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Written on 26th July 2023 by Susan Brown

The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) have published the findings of their review into the quality of care that is provided for teenagers with complex, chronic health conditions during their transition from child to adult health services.

Their review gathered evidence from clinicians in community, primary, secondary and tertiary care, healthcare organisations, parents and carers and young people with complex health conditions, including epilepsy, cerebral palsy and autism spectrum disorder (ASD) about their transition care from October 2019 to March 2021. 

Their report, The Inbetweeners, finds that despite the ‘plethora’ of reports and recommendations from organisations, such as National Institute for Health and Care Excellence (NICE), the Care Quality Commission (CQC), Royal College of Paediatrics and Child Health (RCPCH) and NCEPOD, the expected standards of care for those transitioning from child to adult services are not being met.

The review found that there is no clear pathway for the transition from healthcare services for children and young people to adult healthcare services and the process of transition and transfer is often fragmented. There was also a ‘striking disparity’ between the clinicians’ opinions about the care given and the reviewers’ assessment of the quality of care, which suggests that those responsible for the care of young people transferring from paediatric to adult care services lack awareness of where the transition process is not working. NHS failure to prioritise transition also makes it more challenging for teams to deliver joined up care.

NCEPOD acknowledged the challenge of funding the required improvements highlighted in the report, but pointed out that many of the recommendations support NICE guidelines which have been in place since 2016 and should be happening already as a ‘basic professional expectation’.

What is transition?

The process of transition of a young person to adult health and social care services is defined as ‘The purposeful, planned process of transferring a young person’s healthcare from a child-centred to an adult-orientated care setting that comprehensively addresses the medical, psychosocial, educational and vocational needs of that young person.’  This is a coordinated, holistic process which provides developmentally appropriate healthcare and should not be confused with transfer, which simply refers to the physical move from child to adult services.

The complex process of transition is more challenging, but vitally important, when a young person has multiple, complex conditions, or where there is no adult team to transfer to, or where there is a gap between the end of children and teenagers’ services at age 16 and start of adult services at age 18. In these cases, teenagers are often left to rely on their GP (primary care).

For teenagers with specialist needs arising from cerebral palsy and other conditions involving severe physical and/or learning disability, this is also the breaking point for their families as they realise that they cannot adequately meet their child’s extensive needs from the fragmented, inconsistent and poorly resourced provision that is available via NHS and social care.  

For those whose brain injury or spinal cord injury (SCI) disability was caused by medical negligence, such as a birth or neonatal injury, or by an accident in childhood, compensation can provide a lifeline to personalised, professionally case managed and coordinated care, therapies, educational support and rehabilitation. Many of our young adult and teenage clients come to us at this critical time for help with accessing reliable care, specialist educational and vocational support, suitable accommodation and supported independent living. Too often their families have tried to meet their complex needs from NHS or social care but can no longer access suitable provision.

What does the Inbetweeners report say about transition from child to adult health services?

The review looked for evidence of good, developmentally appropriate care provision, the involvement of young people and their parents or carers in their transition planning, communication and coordination of care between all involved in the transfer to adult services, and the organisation and leadership of transition services. The findings were disappointing but will not come as a surprise for families who are struggling to support their child through the transition process.

The Inbetweeners report highlights a fundamental issue at the heart of transition care failings, which is that transition from child to adult services is often seen as the responsibility of the team that the teenager is leaving, instead of the responsibility of all healthcare professionals who are, or who will be, involved in their healthcare.

Failings at top level

The review found a failure to prioritise and assign responsibility for transition at top level within healthcare organisations. Only 45.3% of organisations and 2% of primary care practises had a clinical lead for transition. 47% of organisations complied with NICE recommendations by having a senior executive responsible for supporting the development and publication of transition strategies and policies and a senior manager responsible for implementing those strategies. 36.1% had a member of the transition service supporting the executive board.  

Of the 86.5% of organisations which had transition clinics staffed by both children and young people’s and adult services, only 30.3% had formal commissioning or funding for them.

Lack of healthcare staff training

Only 9.6% of organisations included transition in the job descriptions of all healthcare staff who were involved in transition. 21.9% provided mandatory training for staff in transition and fewer than half of the healthcare staff in the study had received training in developmentally appropriate healthcare and/or transition. In the absence of a single ‘receiving specialty service’ to take transfer of their care, GPs often become the default coordinator of care and transition for many young people with long term conditions. However, only 53.7% of GPs had training for staff in developmentally appropriate adolescent healthcare and only 17.3% practices provided mandatory training which specifically covered taking over the care of young people with long-term conditions.

Transition planning is starting too late

The review found that for the majority of young people, consideration of transition and the initiation of developmentally appropriate healthcare happens too late. The recommended age for the start of transition is 13 but the reviewers found that transition was started at the appropriate age for only 32.5% of young people and was often first mentioned in their medical records around the age of 17 to 18, when transfer to adult services usually takes place. Reviewers found that opportunities were missed to address transition in 68% of the cases they reviewed.  

Lack of communication and teamwork

Teenagers with complex conditions often require input from multiple healthcare teams. In this study, 79% of the young people were under the care of multiple specialties which, for 73.4% of teenagers, were across two or more trusts or health boards. More than three quarters (75.8%) of young people who had fully transferred to adult services were under the care of two to four teams, but the number of teams ranged from one to 23. Primary care was often not considered as part of the wider team, suggesting that there is a disconnect between acute and community services.

The review was told that 60.5% of young people who were under the care of multiple teams had their transition process coordinated across the different teams. However, the reviewers were unable to find evidence of coordination between teams in 68.2% of the cases they reviewed, and rated coordination of multidisciplinary team care during transition as poor for 43.3% of young people. Young people and their parents and carers also rated the communication between their teams as poor.

Only 17.7% of hospitals and 3.9% of GP practices had a flagging system in their electronic patient records that allowed them to identify young people who were in the process of transition. 35.8% of organisations reported that they had a register of young people with a chronic condition who were currently in the process of transition, but fewer than half had a method of assessing where the young people were on the transition pathway. 84% of organisations did not carry out gap analysis to identify young people who were under the care of their young people’s services but could not access support from adult services.

Only 9.9% of organisations offered a ‘one-stop shop’ means to bring together the various adult and child healthcare teams on the same day for transition planning, to reduce the need for young people to travel to multiple appointments. Only 20.3% of organisations offered appointments outside school or college hours, although the review noted that some special needs schools have clinic appointments at the place of education. Only 13.9% of organisations offered longer appointments for young people undergoing transition, even though these appointments are expected to take more time than a routine condition-related visit.

Failure to involve the GP

The CQC have acknowledged the crucial role of the GP as the only healthcare service which remains in place and does not change for the child when they reach adulthood. All the young people whose care was reviewed were registered with a GP, with the GP’s details noted in their hospital records but only two thirds (66.2%) of organisations had pathway to liaise with the GP for young people transitioning to adult services. More than three quarters (76.3%) of primary care clinicians communicated with other organisations arranging transfer from child to adult services, but only 15.2% of GP practices were involved with the transition for the young person who was registered with their practice, and only 6.5% of GPs had been invited to join transition team meetings with other organisations involved in their patient’s transition. Fewer than a third of young people reviewed said that their GP was involved in their transition process.

Failure to provide age-appropriate care and communication

Age-appropriate environments for teenagers’ care allow opportunities for young people to be signposted to key areas of adolescent health such as sexual health, information around drug use and education. The review found that only 14.1% of organisations had an age-appropriate environment to deliver care in all specialties to young people. Whilst care providers believed mental health was well signposted and discussed, young people told the review that their wider holistic care was not always discussed during transition, with education the most frequently discussed area.

Only 23.8% of young people knew who to contact if their transition was not going well. Fewer than a quarter (24%) of young people had access to a key worker for transition advice after their transfer to adult services, and only 5.2% of organisations had youth workers for all specialties. Where key workers were in place, their caseloads varied from supporting 8 to 420 young people at one time.

66.3% of organisations had a policy stating that young people should be offered the opportunity to be involved in their own transition process, but the reviewers rated the involvement of both young people and parents/carers in their transition process as poor. When young people were asked about their involvement in transition planning, only 5 out of 46 said they were fully involved, and 20 out of 46 said that they were not involved at all. Only 7 out of 50 young people said they had a transition plan, and where transition plans were shared, this was usually by a paper copy or letter, instead of more age-appropriate technologies.

38.7% of organisations said that young people were given the opportunity to be seen alone at clinic appointments by all specialties and 33.9% parents or carers were given the opportunity to be seen alone for all specialties. However, nearly all (96.1%) the GPs gave young people the opportunity to be seen alone.

Barriers which could affect a young person’s own involvement in their transition (such as lack of mental capacity) were identified in the notes of 36.5% young people, raising concerns that the voices of young people with learning disability or neurodivergence are not being heard.

If you have suffered severe injury in an accident or as a result of medical negligence or have been contacted by HSIB/HSSIB/MNSI/CQC or NHS Resolution, you can talk to a solicitor, free and confidentially, for advice about how to respond or make a claim by contacting us.