Thursday, 28 April 2016

Officially in adult clinic

April 4th 2016 was my last ever appointment with the Children and Young People's Team at my hospital. I'm now officially in adult clinic, I'm officially no longer a patient in Young People's clinic, the past 6 years of being under their care have come to an end, I'm now under a new team, and under a whole new hospital. It's, new people, a new train journey to get there, a different unfamiliar waiting room, a whole different atmosphere.

My diabetes has grown up with me in rapid succession in the last few years- as my time at Young People's clinic drew to a close, the hormones in my teenage body settled down and I no longer need as much insulin as before, I don't need as high a correction ratio as I did before, and the one who oversaw that was my consultant- he didn't only see my diabetes change and mature, but he saw me grow up. I was 13 when I had my first appointment with him, 18 when I had my last. I've left Young People's clinic an adult, but I honestly couldn't feel less like an adult in this.

I had transition clinic, I met the team and I met the consultant, and my old consultant told them about me and my history and he told them things that I didn't feel like explaining myself- and he did a wonderful job of it. The transition clinic was in January though, and when I had my last appointment with my old consultant, he asked me how adult clinic was...

"What adult clinic? How is it? I haven't even heard a single thing from them."

Yeah.

From January, until this month, I have felt like I'm not exactly sure where I belong, what hospital do I belong to now? I felt a bit like I was left to float about on my own for a while, until finally I got an appointment letter through for adult clinic a couple of weeks after my last appointment at Young People's clinic. The appointment is in June, with the diabetes nurse. This is one thing that feels a bit alien to me because, my consultant was my first port of call, not the nurses, as lovely as they are, I preferred talking to my consultant. I didn't really like the nurse clinic appointments, felt it was a bit pointless because the only person I ever properly opened up to about things I was struggling with in terms of diabetes in the team was my consultant. I just had that relationship with him.

Now? Now I have no relationship with the people who I'm now under the care of, and obviously that takes time. I think though, that they should follow up with a phone call or an email right after the transition clinic. The DSN did say she was going to email, but she never did. To really get that engagement from the young person, to build on getting to know this new person that's coming into your service, to start developing that relationship that will be so vital in getting anything out of anyone. So, I was a bit disappointed not to hear anything from them for those few months. All I can say is, don't expect me not to feel awkward and not say much at that first official appointment.

I'm sad I have officially transitioned to adult clinic, I love that team that I had, and they have done so much for me. I can't thank them enough. My consultant and I hugged and I gave one of the nurses a hug too and I couldn't say half the things I wanted to say to them there and then or I probably would have teared up so I wrote it down in an e-mail instead. My consultant replied to the e-mail and said he's learnt so much from me, and impressed with the way I've done my best to control my diabetes even though it's really hard. He is, and I told him this, probably the best consultant I will ever have.

We even had a selfie! I want to post it, but then again I don't just purely for privacy reasons for him and for my diabetes nurse.

So that's it, good bye young people's clinic, hello adult clinic...

Tuesday, 26 April 2016

Parliament with JDRF #Type1Catalyst

Yesterday, I took myself off to Parliament to join JDRF, MP's, their constituents, and some health care professionals, to celebrate the achievements of JDRF in funding into Type 1 Research, and to be reminded of how important the role the Government plays in making all of it happen. Lots of blue T-Shirts congregated in the Terrace Pavilion in the Houses of Parliament for the event, hosted by Jamie Reed MP. It was a wonderful opportunity to hear about the progress being made by scientists and doctors in the quest to prevent and cure Type 1 Diabetes, as well as a good opportunity to catch up with internet friends!

Jonathan Valabhji, National Clinical Director for Obesity and Diabetes at NHS England, was there, as well as Theresa May, Home Secretary, who took the time to pop in quickly, as she did at Type 1 Parliament in 2014. Then there were researchers, those whose names you probably haven't heard of, such as Mark Peakman, Professor of Clinical Immunology at King's College, who is trying to figure out how to stop the bodies immune response to the insulin-producing beta cells, who knows important information like the fact that if your body still produces C-Peptide then you have less risk of complications...These people are the ones who work behind the scenes, the ones who work tirelessly to find the way that this world will be rid of Type 1 Diabetes, to find ways of preventing this disease from ever developing, to stop children and adults lives being dependant on insulin.

This time was different to Type 1 Parliament, because, instead of everyone rallying to try and get our MP's to back Government funding into Type 1 Diabetes research, we were celebrating progress, celebrating things that as Karen Addington, CEO of JDRF UK said, are no longer ideas, but they're being developed and they're being tested and they're a reality. And what a privilege it was to be able to acknowledge all of these big strides being made in Type 1 Diabetes along with JDRF UK and other people who are living with Type 1 Diabetes.

What I also did, as well as chat to lots of wonderful people and appreciate the work that JDRF does, I had the chance to interview Derek Rapp, who is the CEO of JDRF US, before the event began. Now this was a very last minute arrangement because unfortunately, Laura (Ninjabetic), who was the original person meant to be interviewing him, couldn't make it, so she asked me to step in...so I found myself at Abington Street Gardens, Westminster, interviewing Derek, who is a very nice man and I'm really pleased I was able to fill in for Laura when she asked!

We left Parliament with the message to keep being catalysts for change, and with the words "You're the reason the landscape of Type 1 Diabetes research is better" from Karen Addington, and Jamie Reed MP telling us to "Keep rattling the bars". We have to keep pushing for change, and keep rallying for funding into the research that will, in time, and with the all important Government support and funding for JDRF, hopefully help us see a world with out Type 1 Diabetes.