‘Guide and empower young people…’

The Queen’s Nursing Institute undertook a two-year project, funded by the Burdett Trust for Nursing, which focused on enabling community nurses to support young people with long term conditions through the transition from children’s services to adult community healthcare services.

21 year old Hannah Phillips accompanied project manager, Dr Candice Pellett, OBE at focus groups across the country sharing her personal transition story.

‘Guide and empower young people to become independent when it comes to our health.’

‘I’d like to start things off with a little introduction, as a guest blogger for The QNI, you may not have come across me before. So, my name is Hannah Phillips, I’m 21 years old from London.

I met Candice Pellett, QNI Teen Transition project manager, at a transition master class day I was speaking at earlier on this year. My keynote speech? Transition. You’re wondering why I’m the right person to speak on such a topic, right? Well, I was born three months prematurely; at 6 months I caught meningitis, and I was then diagnosed with an incurable heart disease called Complicated Ebstein’s Anomaly. I’ve spent a lot of time in and out of hospital and had various surgeries and treatments. This will carry on for the rest of my life.

The transition process (moving from children to adult care) wasn’t an easy one for me. As I’ve grown older within the healthcare system, I’ve realised how the profile of young patients can be non-existent in healthcare services. We get ‘shoved under the carpet’ or lost in the system. We go from playrooms and schools, to big white rooms and restricted visiting hours.

It was my transition experience that fueled me with energy to make change. I wanted young patients’ voices to be heard and what’s more, I didn’t want any other young patient to go through what I did.

Over the last few months, I’ve been lucky enough to go ‘on tour’ with the QNI, being involved in their two-year transition project, which has the goal: ‘To deliver a comprehensive programme of work to improve the experience of a young person transitioning from children’s to adult services, with a specific focus on district nursing and general practice nursing’

I’ve quite literally travelled the country with them, and they’ve given me a platform to share my story in depth, with the nurses they work with. No two focus groups have been the same, but the volume of information and the education gained around transition has been invaluable.

It has been such an eye-opening experience. I have definitely learnt something different from each focus group we have led, and met some really inspiring medical professionals; inspiring because they are also hungry for change. Whilst it’s been a real pleasure to share my story and provide nurses with a deeper understanding of what it’s like from a patient’s perspective, the richness for me has come from those who have participated. Nurses from all backgrounds and experience, who recognise the problems, and who are passionate about seeing change attended the events.

I’ll be honest and say that it hasn’t always been easy. We’ve been faced with some challenges and as we began to learn about how big the issue of transition actually is, we also began to understand just how differently it is run in various parts of the country, or for different patient needs. That’s when the light bulb went on in my head that this is a serious issue not just for the patient, but for all those involved.

There were times where we would come away from a focus group and just be totally wiped. Our brains hurt, literally. We tried to process the information and put pieces of the puzzle together: a tough thing to do in some cases. The importance of this two-year project is key though, because the point is, transition is out there and we are speaking about it, and in my view that’s the first and most important step to take. To highlight the problem, in order to promote change.

There is a long way to go, for sure. We are dealing with a national system, which is clearly under strain in some areas. However, I do believe that having a more community focused approach is vital. Why? Because one of the biggest challenges that arose during our time ‘touring’, was the need for better communication, or lack of it. We can deal with that by bringing the community together, involving everyone. I commend the QNI for doing that. For thinking outside the box and not just focusing on their own community.

My thanks have to go to the Burdett Trust, for supporting the QNI with this project. Also to the QNI for making a patient’s voice heard and allowing me to come on board. My words to those who have been involved and attended are, ‘thank you’. Thank you for having the courage to  be open and participating in such an important issue.

I know we’ve only scratched the surface with these focus groups, so I’m glad that there is another year yet to come.’