The Queen’s Nursing Institute is undertaking a two-year project, funded by the Burdett Trust for Nursing, which focuses 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 has accompanied project manager, Dr Candice Pellett, OBE at focus groups across the country sharing her personal transition story.

You can find out more about the project by reading previous blog posts by Hannah and Dr. Candice Pellett OBE. Hannah also has a personal blog which shares her story.

 

‘Well, I have no idea where the time has gone since I first started working on the transition project with the QNI. It’s been a whirlwind of experiences, speaking across the country to so many professionals, who have such a willingness to learn.

Since starting, we’ve spoken in front of many people, held board meetings, filmed a video with other young patients and created an online learning resource, which is already having an impact on those who use it. It’s going by quickly, but this is just the beginning: he beginning of something new and exciting for both patients and professionals.

Throughout each session, my understanding of current changes in Transition deepens, and I see how big the subject of Transition is, and each time on the train home I’m faced with the fact that this is a subject affecting patients on a national scale. Whilst that thought can be daunting, it’s a luxury to know that I have played a part in influencing or planting a seed of change in people’s minds.

I often take the opportunity to sit and reflect on our work. Collectively we have made tremendous progress and there is a strong desire for change across the board, which is encouraging for everyone involved. We are heading in the right direction, but it will take a big leap to get everyone to where they need to be. It has to be a group effort, and from the numerous conversations and sessions we have run, communication is one of the key barriers to this change becoming a reality.

Each session offers the opportunity for a Q&A, and for me this has always been the most enriching part, as well as the time where I have learnt the most. I always speak from experience, from the heart and for anyone who has heard me talk, you will know that it’s not always about the ‘good’: in fact, I speak mainly of the aspects of transition that really need improving and this isn’t what people are expecting to hear. With that, naturally there come some challenging questions and concerns as to how the system is run, but for me that’s where the beauty lies. We are turning the tables and getting people to think, to question what is right, or what could be improved.

It’s a question from a recent session that really got me thinking: I came away and immediately went home to alter my speech. I was presented with a moment where my appreciation for your work was being questioned, which is a very valid point! I was taken aback, as I realised that nowhere in my story do I share my appreciation for everything in the healthcare system. So, I didn’t take anything away or change the story, but I added on a part which I was clearly missing. Appreciation. Yes, I may share the nitty gritty, but I have to make it clear that I am so grateful for all the care I have received and the effort that already goes into Transition, even if at the moment that remains limited. If it wasn’t for the NHS, the people within it and the system they have created, I wouldn’t be here today and engrossed in the moment, I can sometimes forget that.

In this blog post I wanted to take time to reflect on the challenging moments of this journey, but also to say ‘thank you’ for them because they have helped me develop, not only as a person but also as a patient. I started this journey with real understanding of Transition; I was an expert but only from a patient’s point of view. Well, patient and family. However, I was affected by Transition in a certain way and whilst that is important, my eyes have been opened to the good and, as I stated before, the greater meaning of this topic. I have met so many individuals who have reassured me that change is happening beneath the surface, others who have shed a tear in disbelief at my story and then those who feel so encouraged by our work, that change for them starts the minute they leave our session. So, you see, we are all in this together.

I lacked that perspective at the start of this journey, I knew my story and I wanted to share it, but I perhaps didn’t take in what I heard from others all that well. I don’t take back what I have shared and will no doubt continue to share until every patient and professional is comfortable with the process, and we feel we are doing our system justice. However, I will listen and be open to all the work that is going on around this topic. Let’s face it, no matter how big or small, change is change and that can only be a positive move forwards.

I am incredibly proud and honoured to have been asked to take part in this project, and I have met some great members of our health community who are working incredibly hard. Whilst you listen to what I have to say, I also take advice on board and thoroughly enjoy hearing stories and the changes that are being instated due to our shared work. It’s a fabulous feeling to be able to inspire others, in the most positive way.

I’d like to thank the QNI for allowing me to come on board with this project, for giving young patients a clear voice and opinion within the system, and especially to Project Manager Candice Pellett who has had such an important role in organising and leading these sessions.’

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