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Improving Transition for Children and Young People – Dr Jacqueline Cornish

Dr Jacqueline Cornish, NHS England’s National Clinical Director Children, Young People and Transition to Adulthood, explains the importance of the publication of the first Service Specifications for CAMHS to Adult Mental Health and other Services:

Whoever added “Transition to Adulthood” to my National Clinical Director job title when I joined NHS England was inspired.

As a clinician of over three decades experience I have attempted with variable success to transfer my patients at the right time to adult services. My colleagues in these services have on occasions reflected ruefully that they are not always able to give the same sort of attention to young adult patients, because of the way that their services are constructed and commissioned.

There is a growing movement that recognises that young adults aged 17 years and 364 days are no different to young adults aged 18 or 19. The brain doesn’t finish developing until the age of 25, so there is an argument for building young adult services that meet the developmental needs of young people while they have so many changes in their lives, to make sure there is continuity in their support from those of us in health and support services.

All clinicians, whether paediatricians like myself, child and adolescent mental health practitioners, or adult clinicians, working with this age group must recognise the need for a planned and supported transition process for young people with long term health conditions and complex healthcare needs as they move from child centred to adult delivered services and lifestyles.

There is now a wealth of evidence, best practice, case studies, literature searches and guidelines about a process that happens over years, and needs to cover three phases:

  • Timely preparation started within child and adolescent services
  • Actively managed and co-ordinated transfers between child and adolescent and adult services
  • Continuous developmentally appropriate support from adult services.

Although there are some shining exemplars of good practice, in general transition is poorly planned, poorly executed, and poorly experienced. There are enormous risks for young people disengaging or being lost in the transition process, at this vulnerable point in their development as they leave secondary education, move towards more independent living, gain legal responsibility for their choices and lose those parts of their support network that are only available within child and adolescent services.

Putting young people at the centre of well planned, integrated and supported transition enables them, and where appropriate those who care for them, to stay in touch with the teams that look after them. Consequently young people are more likely to carry on with their treatment, and continue to develop self-management of their condition. They are more likely to know what to do if they are worried that their health is deteriorating.

As well as the benefits to young people, for example increasing their ability to stay in education, in work, to live independently and achieve their personal goals, this saves money. Reducing missed out-patient appointments, emergency department presentations in mental or physical crisis, unplanned admissions and length of stay, and the need for additional care resulting from preventable complications of their health condition is good news for the NHS and social care and is infinitely preferable to the alternative.

I have been working with colleagues within NHS England to develop a wide Transition Programme to deliver guidelines for Commissioners in Health and other agencies for the safe transfer of young people with chronic conditions to adult services.

Most excitingly we have just published two tools for commissioners via the Commissioning Assembly bulletin. First is a Model Specification from Child and Adolescent Mental Health Services, and second is a NHS Standard Contract: Model Transfer and Discharge from Care Protocol for young people with mental health problems in transition from CAMHS.

Why two documents? Well, we had enormous support from young people, practitioners and commissioners. The request for the transfer protocol came from commissioners, who wanted something that could be put into the standard NHS Contracts for child and adolescent services and adult services as well as having the option of a longer specification for a particular service.

These publications build on the literature I have already mentioned, taking the good advice and resources that are still available on Chimat, SCIE, the Joint Commissioning Panel and all the good work from organisations such as Youth Access and projects such as the Mental Health Foundation’s Right Here.

It has been such a joy to work with so many skilled, dedicated and highly driven people leading to this fantastic result.

The recommendations were developed with input from young people themselves whose energy and enthusiasm was infectious and motivation humbling. I am always inspired by the young people who work on the Children and Young People Improving Access to Psychological Therapies (CYP IAPT) programme, participation. They have a particular interest in transition, and recently presented on that very topic at the European Congress on Youth Mental Health in Venice.

I was surprised to hear that they were the only young people invited to present at a conference packed full of presentations from professionals. I was less surprised that many countries asked them to visit and present, or by their reply – ‘Why don’t you ask young people your country?’ – an entirely reasonable and logical response!

The timing of this publication is perfect, as it exactly compliments this year’s Planning Guidance and some of the recommendations which will flow from the Ministerial Children and Young People’s Mental Health Taskforce Report.

Young people themselves have said “It’s too late starting at 18… it feels like falling off a cliff edge when all support from children’s services stops and the future is uncertain…..you need to address the situation and prepare for this change much younger…”

So barely pausing from this success, there is much more to do and many more work streams to deliver on. We have guidelines for transition in diabetes, almost at the same stage and near to publication. Just like the one for specialised commissioned services, it has an insert prepared to be added to all applicable service specifications.

There is excellent work taking place in one of the most challenging areas, special educational needs and learning disability together with rehabilitation and paediatric palliative care. The generic principles of what constitutes a good, well experienced, planned and delivered Transition process are of course the same, but the professionals and agencies involved are quite diverse.

We also acknowledge the difficulty and complexity of transition for all students due to geographical relocation and transience of residence. The importance here is ensuring the close liaison between the young person’s home-based professional and college-based professional, especially in the field of mental health and long term conditions such as type 1 diabetes and inflammatory bowel disease. There are 2.34 million students in higher education in the UK, and we must surely get better at looking after our future leaders/professionals/parents/carers.

Through all this work I have been stunned at all the young people’s bravery and eagerness to participate in these various groups. They are quick to tell us so articulately about what they need to make their experience at such a difficult time as good as it can be, and ready as well to share the joys of what we have achieved.

I also want to salute the support and devotion of so many parents and carers as they prepare these young people to take their place as independent adults, who are no less vocal about their desire to play whatever role their young person wishes them to fulfil.

How could we not continue with such powerful advocates driving us on?


Image of Jackie CornishDr Jacqueline Cornish was appointed to the post of National Clinical Director Children, Young People and Transition to Adulthood in NHS England in April 2013. She is passionate about continuously striving for improved healthcare outcomes in this young group, giving them and their families the best experience and delivering care safely to the highest possible standard.

She is a practicing clinician, having only recently stepped down as Director of Paediatric Stem Cell Transplant (SCT) at the Bristol Royal Hospital for Children. Dr Cornish specialises in the transplant of children with a high risk haematological malignancy, and the unit has been pioneering in the development of the use of alternative donors, detection of molecular minimal residual leukaemia, and white cell chimerism techniques.

The Bristol SCT Unit is a world leader, and published clinical and research outcomes have set a gold standard in the transplant of childhood acute lymphoblastic leukaemia which has not been surpassed.

Dr Cornish has over 20 years’ experience of medical management in the NHS, having been Head of Division of Women’s and Children’s Services at University Hospitals Bristol NHS Foundation Trust for 10 years before taking up the national post. She believes strong synergy between clinicians, dedicated managers and commissioners leads to the best result for patients and is a hallmark of high performing organisations and services.

With this clinical and managerial background, she intends to contribute towards making a real impact on the improvement of health and wellbeing outcomes in children and young people in England. She believes strongly in parity of esteem, for children and young people overall but importantly bringing mental health on a par with physical health.

She hopes to secure robust transition to adult services though multiagency partnership working for all young people with chronic and long term conditions, making their experience positive such they remain engaged with their services and are supported to take responsibility for their own health as they move into adulthood.

 

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