National conference: improving diabetes transition – Lynsey Choules

A few weeks ago, I was invited by Diabetes UK to a national conference organised by Diabetes UK which followed the publication of the UK’s first National Diabetes Transition Audit; a report looking at the transfer from paediatric to adult services within diabetes care.

I jumped at the chance to get involved with this as it is a subject that I am very passionate about due to my own experiences a few years ago. The period in a young person’s life where their care changes is hugely important to get right as it can affect their long-term health outcomes as well as their engagement with diabetes care.

It was quite bizarre to arrive and sit down in a room full of 60+ healthcare professionals at first and I thought I might feel out of place for the rest of the day. Healthcare professionals (HCPs) had come from all over the country to understand the key findings of the report as well as share best practice and hear from clinical leads for diabetes. I’m used to being in groups with other people with diabetes, thanks to being a member of Diabetes UK’s Young Adults Panel and completing courses such as DAFNE, but being outnumbered by HCPs made me feel quite nervous!

I found it really interesting that only 20% of attendees were from adult diabetes services, especially since there was a lot of discussion about how adult and paediatric services need to be more connected as it is both sides that handle the transition of care.

The study itself involved following paediatric patients using their NHS numbers, which were tracked over 11 years (2003-2014) as they moved into adult care, focusing on patients aged between 12 and 24. The key findings that were the most interesting to me were:
– Annual measurement of HbA1c decreases post-transition
– The least variation in care processes was found when transition happened between the ages of 16 and 19
– HbA1c targets were more likely to be reached pre-transition
– There is a higher number of DKA admissions post-transition (although the likelihood of developing DKA is higher the longer someone has had Type 1 diabetes, which could contribute to this figure)

The report suggests that adult and paediatric services should provide clear transition pathways that are user friendly, that paediatric services should ensure that children and young people should stay in their care until at least 16 years of age and that adult services should ensure that young people have transitioned into their care by 19 years at the latest. You can read the full report here.

These findings got me thinking a lot about the differences between my diabetes management as a child and young adult. As a child, I had consistently good HbA1c results and attended clinic appointments regularly, but I wonder how much of this was to do with having my parents around a lot and having a great medical team at school. Things definitely changed when I became more independent. The recommendations regarding the age of transfer of care got me thinking too – I wonder how many people would feel they were ready to move into adult services before the age of 16 or whether there are some young people who wouldn’t feel ready at the age of 19.

After hearing from clinical leads, myself and Charlotte, another member of the Young Adults Panel, offered a patient perspective on transition. Charlotte was fortunate to have a very positive experience of transferring from paediatric to adult care and discussed how this has helped her to self-manage her diabetes successfully and fulfil her own passions – including being a pro wrestler!

My experience was somewhat different in that there was no real “transition” at all. Shortly after I turned 18 I had a clinic appointment within paediatric services. When I went to book my next one, the receptionist looked at my date of birth and moved me straight into the adult clinic. I turned up to my next appointment to be met by a waiting room of much older patients, many with foot or leg amputations, which was extremely daunting. I was seen by DSNs and consultants who I’d never met before and spent most of the allotted time going through my medical history.

At 18, I was a grumpy teenager who was already starting to disengage with my diabetes care altogether and I think this experience in the clinic really was the nail in the coffin. I started university and didn’t see a diabetes team for 3 years until I was in and out of hospital constantly with various infections and had an HbA1c of 156. I’d lost about 15kg from a healthy weight, but this was never addressed. I didn’t have my eyes screened either and I have now had 5 operations to re-attach the retinas in both eyes and I am registered as visually impaired. While mine might be an extreme case, these consequences show the importance of staying engaged with diabetes care and how vital it is to get the transition period right.

It was great to be able to discuss my own experience as I think a patient perspective is extremely valuable to HCPs. While scientific facts and figures are important, it’s equally important to remember that every patient is different and that living with diabetes is never black and white.

After the morning’s presentations, we broke off into groups for workshops. In my first workshop, I learned about a new scheme in Newham (East London) where clinic appointments are held via Skype. I was a bit sceptical of this to begin with as I know that I really value meeting my DSN and consultant in person, but the findings were very positive. There were higher attendance rates due to the convenience of Skype and HbA1c results improved too. The second part of this workshop was about the use of language in clinic appointments. Careless or negative language can de-motivate people with diabetes and we were asked to think of some examples of this. My most hated phrase is “bad diabetic” – something I was accused of being several times by HCPs in the past.
The second workshop was led by Rose Stewart, a clinical psychologist who is currently working within a diabetes clinic.

Of 78 patients (young adults), 40% scored in range of clinical distress after completing a questionnaire. While this is only a small number in total, it reflects the wider problem and this percentage is probably conservative. People with diabetes tend to have higher levels of emotional distress than those without it, yet it is extremely difficult to secure funding for support within the context of diabetes care. Rose talked about the value of working in the diabetes clinic environment as it reduces referral anxiety for patients, improves the depth of conversation and allows instantaneous one-off sessions for patients. It also encourages knowledge sharing between diabetes and mental health professionals. The most valuable message I took from this session is that “control is not the goal”; it is just a stepping stone to a good quality of life. I had never looked at my diabetes management in this way, but when I thought about all the things I want from life; a family, successful career, fun (!), I realised that having good diabetes control was something I need to have to get me there – not my main aim in life.

When we all came together at the end of the conference, we were reminded that although the NDTA had produced some helpful data and recommendations, the most important thing is acting on it. Before the conference, I felt quite let down by the services I’d experienced but being around so many HCPs made me understand it from their perspective. I didn’t know much about how funding was allocated within NHS services, nor did I understand the full extent of administrative difficulties for individual CCGs but I can now see why there are problems when it comes to the transition of care. I hope that the NDTA and the conference itself encourage a more joined-up approach and result in better outcomes for young people with Type 1.

Making positive changes for young people with Type 1 – by Rebecca

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