Helena Clements: Transition of young people with complex disability to adult services

I am delighted to talk about transition of young people with complex disability to adult services. As the local lead for complex paediatric neurodisability and paediatric palliative and EOL care the subject is close to my heart. Having been a consultant for 22 years there are a growing number of young people who have made it through childhood, and I have to hand over. This is a challenging time for me, their parents and the patient themselves. And equally challenging for the multiple teams who need to get to know them and take them on.

There is something uniquely special about starting the clinical journey with a baby or small child and their parents as we come to understand their condition and its implications. Most very complex patients have started life with complexity due to congenital problems, genetic syndromes, or profound prematurity or birth injury. Some present in late infancy and childhood and all change, grow and develop, presenting new and often progressive challenges as a result. Parents are experts of their child and continue to amaze me with their observations and appreciation of subtle changes which are often significant. They are rarely wrong!

Many patients who reach adulthood are becoming frailer and those who would have died in childhood now transition and may die within a few short years. Where appropriate, paediatricians will have already had detailed conversations with parents about End of Life and may have drawn up a care plan with them. Sometimes there will be detailed descriptions of ceilings of care and resuscitation in event of cardiorespiratory arrest which may include rescue breaths but no cardiac compressions for example. Nearly all events are respiratory, and some are reversible with airways manoeuvres. ReSPECT forms need to be read in conjunction with the care plan. A ReSPECT form does not always imply DNACPR with this kind of patient. And some should be considered for critical care depending on the likely reversibility of their presenting problem. Most have “young” hearts and kidneys and tolerate profound hypoxia and acidosis better than older patients. I often talk about trials of care, managing single organ failure and one-way extubation!

Over the years I have carefully selected (”groomed”) colleagues who will continue the person and family-centred care for my patients as they transition. Many have progressive respiratory failure and may be technology dependent. This is helpful as it may enable us to facilitate admission to a particular respiratory area and for a ward team to get to know the patient and their family. In my experience this approach will enable parents and carers to be part of the in-patient team and help with delivering the very complex care or at least share their knowledge of providing care to their child and interpreting communication etc. They will almost certainly be keen to take their loved one home, probably have the means to do it and will know when they are back to baseline or “manageable” at home even if that is for EOL care.

I appreciate that these complex young people are very resource intensive, and this means that their medical carbon impact is also high. Optimising their care and supporting their families to provide care is important. Considering the needs of the whole family is essential. When we fail to do this, we end up with multiple patients with physical and mental health issues and increasing health inequalities experienced by them all. This is even more expensive and carbon intensive and impacts may continue for years after the index patient has died. I consider these impacts to be failures of the MDT which includes social care, housing, and many other agencies as well as the clinical team. When families start to collapse in this situation, they are less likely to be proactive, less likely to engage with those good conversations about advanced care plans and more likely to re-enter the revolving door of health care which is in no-one’s interest and so often happens in the last year of life.

I strongly believe that every acute trust should have adult-based transitions specialist nurses to support the coordination of these complex strands. They can smooth the way through an admission and make the most of highly skilled parent experts. They can support discharge with shorter length of stay and plans which may well prevent readmission, promote good conversations and have the capacity and networks to ensure that the needs of parents, siblings etc are met as well as those of the patient. I am positive that the investment in this nurse will be recouped may times over across all areas of the hospital (including complaints, legal and bereavement teams) but also much more so in terms of support to the wider family, helping keep siblings in school, at least one parent in work and optimising all their health and wellbeing. I have made that case at my own trust which is heard and understood but the money/commitment to the post has not yet materialised. Another thing to achieve before I fully retire!

All of the above is important to me as a clinician but is another example of joining the dots. As long as we focus on a single system in the body, or a single place, or even a single patient we will fail to join the dots and miss the point of the “whole” and all the interdependencies. We have a health and social care system in crisis, we have a climate and health crisis! As health workers we need raise our heads, look at the big picture and use our collective power and moral authority to join the dots and make a difference for patients and families like these, for our local populations and for humankind and the planet.