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North East-based national research recommends improvements to put young people at heart of NHS care

Friday, 24 May, 2019
North East-based national research recommends improvements to put young people at heart of NHS care

A major national study based in the North East has recommended a number of improvements which would place young people with long-term health conditions at the heart of their NHS care.

A major national study based in the North East has recommended a number of improvements which would place young people with long-term health conditions at the heart of their NHS care.

The research, led by Northumbria Healthcare NHS Foundation Trust with teams at Newcastle University and other UK institutions, has concluded that introducing six key factors would be likely to improve the health and experiences of young people moving from children’s to adults’ services.

The five-year programme examined the period when young people with conditions such as diabetes, cystic fibrosis, cerebral palsy, chronic mental health problems and muscular dystrophy transfer from children’s to adults’ services – known as ‘transition’. Typically this occurs between the ages of 14 and 21.

The research recommended that discussions should take place with young people about their individual approach to healthcare in order to personalise communication with them. Promoting young people’s confidence in managing their own health, involving parents appropriately and meeting the adult team prior to transferring were associated with better outcomes for patients, the study also found.

With regards to ‘transitional’ services, the study suggested developing those which take into account the changing physical, social and psychological needs of young people.

It also recommended clinicians from adults’ and children’s services coming together with GPs to plan health services, NHS trusts adopting an organisational-wide approach to implementing them and commissioners of adult services being involved in developing them alongside commissioners of children’s services.

The study, published today by the National Institute for Health Research (NIHR) – see here, is the most comprehensive to date, involving around 400 young people, aged 14-18 years, with long-term health conditions from 27 NHS trusts across the UK.

The research findings have already been put into practice at Sheffield Children’s NHS Foundation Trust and informed the transition content in the NHS’ Long Term Plan and NICE (National Institute for Health and Care Excellence) guidance.

Prof Allan Colver, who was consultant paediatrician at Northumbria Healthcare NHS Foundation Trust and is currently professor of community child health at Newcastle University, led the programme. He said: “We all know that the teenage years are challenging and when a young person is also dealing with living with a long-term condition, it can add additional strain to what can already be a difficult period of their lives.

“The process of moving from children’s services, where everything tends to be organised by children’s services and parents, to adults’ services, where young people take more responsibility for their healthcare, can be disorientating.

“Due to their brain development, young people’s ability to manage time, plan and multi-task has not matured fully and as a result, they can be not well-organised and consultations with clinical staff may be confusing both for young people and staff.

“Developing services which take account of a young person’s stage of physical, social and psychological development – known as ‘developmentally-appropriate healthcare’ – which put them at the heart of their care is needed. For example, clinical staff should consider re-sending an appointment to a 17-year-old who has missed one without explanation; whereas for a 30-year-old, the policy of many NHS trusts is for no further appointment to be sent.

“We’re pleased that our findings are already being used to make a difference to young people and, now that our recommendations have been published, we hope that they will help to improve the healthcare of young people across the country.”

Sir James Mackey, chief executive of Northumbria Healthcare NHS Foundation Trust, said: “We’re delighted that this major piece of research – the first for our trust to be awarded a programme grant from the NIHR – has concluded.

“This is such a significant area of healthcare at a crucial part in teenagers’ lives and these findings have the potential to benefit young people nation-wide.

“I’d like to thank Prof Colver and the team for shining a light on this important issue.”

Jessica meets adult team to help ease transition

Jessica Onyebuchi, 17, has had chronic arthritis since the age of 11.

Over the years she has needed to stay overnight in hospital, have regular hospital appointments and medication to bring her condition under control so that she can usually be free of pain and able to do what she wants.

Jessica, from Gateshead, said she is ‘apprehensive’ about transition however it has helped to meet the doctor in the adult team, at a different hospital, to whom her care will transfer in due course.

She said: “Transition is a big deal to me because there are so many other things going on in my life – exams, friendships and so on. As arthritis really affects me, I can’t forget about it.

“My mother is still involved, but gradually more of the discussions are with me by myself which is daunting.”


Jessica Onyebuchi, from Gateshead, who has had chronic arthritis since the age of 11, is about to transfer from children’s to adults’ services.

Media contacts

For more information and to set up interview with Prof Allan Colver or Jessica Onyebuchi please contact:

Jaclyn Curry – Northumbria Healthcare NHS Foundation Trust

0191 203 1654 / 07833 046680

Karen Bidewell  – Newcastle University

0191 208 6972/7850.

Notes to editors

Quantitative and qualitative study design:

In the quantitative longitudinal study, 374 young people with long term health conditions were recruited between June 2012 and October 2013 from 27 NHS trusts across the UK to assess whether nine proposed beneficial features (PBFs) of transition services contributed to improved outcomes. The young people, aged between 14 and 18 years, had not transferred to adult services at the time of recruitment, and had a condition deliberately selected to represent a chronic condition (diabetes, n=150), a disability (cerebral palsy, n=106) or a neurodevelopmental problem (autism spectrum disorder [ASD] with associated mental health problem, n=118). The PBFs explored included age-banded clinics, meeting the adult team before transfer, promotion of health self-efficacy (help to boost their confidence in managing their condition), written transition plans, parents engaged appropriately, having a key worker, having a coordinated team that communicates well together, holistic life-skills training (involving relationships, finance, employment, housing, social relationships as well as health) and a transition manager for the clinical team. Participants were visited four times, (one year apart), by research assistants who explored whether they had been exposed to each of the nine PBFs (recorded as received or not in the previous year), and questionnaires were completed by the young people to assess participation, subjective wellbeing, satisfaction with services and medical condition-specific measures.

Qualitative aspects of the study included in-depth interviews with 13 of the subjects and interviews with 40 additional young people (with a whole range of other long-term conditions, not just diabetes, cerebral palsy and ASD) on how they approached transition. Investigators also interviewed healthcare commissioners about how they viewed transition and managers in three NHS Trusts to identify facilitators and barriers to introducing Developmentally Appropriate Healthcare.

The research findings have been used:

  • The team’s paper on ‘developmentally appropriate healthcare’ was the only research cited in the 2016 NICE Guidance on transition – NICE Guideline 43. Transition from children’s to adults’ services for young people using health or social services. Published 24 February 2016.
  • Dr Jacqueline Cornish, NHS England’s national clinical director for children, young people and transition to adulthood, said that the NIHR transition research helped inform the Transition content for children and young people in the NHS’ Long Term Plan. By 2028, she added, NHS England hopes to move towards service models for young people offering person-centred and age-appropriate care for mental and physical health needs, rather than an ‘arbitrary transition’ to adult services based only on age. NHS England. NHS Long-term Plan. Published January 2019.
  • Dr Priya Narula, clinical lead for transition at Sheffield Children’s NHS Foundation Trust, said: “The importance of ‘developmentally appropriate healthcare’ has been embedded in our trust-wide transition training for healthcare professionals. Our trust has adopted a trust-wide approach to implementing transitional healthcare with the establishment of a trust transition team (including an executive and non-executive named lead, clinical lead, managerial lead, nurse lead and transition coordinator) with a clear reporting structure. There are regular, well-established cross-trust meetings between the children’s and adults’ trusts, which primary care and commissioning representatives also attend.”

About the National Institute for Health Research

The National Institute for Health Research (NIHR) is the nation’s largest funder of health and care research. The NIHR:

  • Funds, supports and delivers high quality research that benefits the NHS, public health and social care
  • Engages and involves patients, carers and the public in order to improve the reach, quality and impact of research
  • Attracts, trains and supports the best researchers to tackle the complex health and care challenges of the future
  • Invests in world-class infrastructure and a skilled delivery workforce to translate discoveries into improved treatments and services
  • Partners with other public funders, charities and industry to maximise the value of research to patients and the economy

The NIHR was established in 2006 to improve the health and wealth of the nation through research, and is funded by the Department of Health and Social Care. In addition to its national role, the NIHR commissions applied health research to benefit the poorest people in low- and middle-income countries, using Official Development Assistance funding.