It has been nearly a year since I got the chance to appear on national television for the first time raising concerns about the true costs of university, especially for disabled students. 

I was kindly asked and honoured to be part of organising a youth conference as a chance for young people to have a platform to discuss issues and topics which matter to them and really think that healthcare professionals need to concentrate on. This process took a year for the event to come to fruition, but after much hard work of all parties involved, we are so delighted this event is going ahead. I personally look forward to this event happening and I am honoured to be a part of this youth movement to affect change for the better. #YoungPeopleMakingWaves 

Here is a short blurb prepared for the event: 
This one day conference (10am-4pm) on April 16th 2014 has been instigated and organised by youth members from Birmingham Children’s Hospital, Royal College of Paediatrics & Child Health and the National Children’s Bureau.

The event will be hosted by special guest Aled Jones from Radio 1’s The Surgery and is supported by Healthwatch Birmingham.

The aim of the day is to bring young people and healthcare professionals together to discuss issues that are important to young people. There will be a variety ofdiscussions and Q&A sessions based around our 4 key themes: Mental Health, Signposting and Transition, Communication and Health Education.

This is a fantastic opportunity for shared learning that we hope will bring about real change.

For more news and updates about the event follow @TheBigDiscuss 

On 20 March 2014 the BPSU, in collaboration with Rare Disease UK and the RCPCH Youth Advisory Panel, held an event to mark Rare Disease day 2014 and the UK plan for implementing the UK strategy for rare disease. Over 100 people attended the event including patients and carers, healthcare professionals, researchers  and policy-makers. All were united by the theme of the day ‘Joining together for better care’. A podcast was unveiled by the Youth Advisory Panel on living with a rare disease. I was a part of this podcast and I talk about what my experience is like as a disabled individual.

 I have experience of being involved in a research trial. We have captured my thoughts and experiences in this short podcast which also sets out some recommendations from the RCPCH Youth Advisory Panel in involving children and young people in clinical research.

On the 6th February 2014, I had the pleasure to host the first inaugural Masquerade Ball organised by the SSEES Committee. I, as the welfare officer, had the privilege to pick the charity which we would be supporting as this would be a charity Masquerade ball.  I chose to support the Brittle Bone Society.  They fundraise for specialised wheelchairs and offer a free confidential support service as well as signposting on day to day issues such as benefits and treatments.  This event had a lot of stress to organise, including trying to make the club more disabled friendly. However, we all pulled together as a committee and we pulled it off. We are proud to announce that we raised £2622.02 for the Brittle Bone Society, thanks to the generosity of the students of UCL and their friends. We are looking forward to the ball next year. 


We are delighted to be also featured in the winter newsletter for the Brittle Bone Society, an excerpt of which can be found below:


For more information about the Brittle Bone Society and the work they do please visit: http://www.brittlebone.org/

On 5 February 2014, I was asked to present a young persons response to the call put out by the NIHR (National Institute for Health Research). This call was asking research to commit to more research into the area of long term conditions in children and young people. This presentation was given in front of many health care professionals and researchers, key stakeholders in this call. I was very proud to be able to present a variation of my turning the tide speech at this event. 

On 28 November 2013, I was elected the Marketing officer for the UCLU UNICEF on Campus society. The day after, on a fundraising drive to raise support for a Fun Run UNICEF on campus was organising, I was interviewed by the genius and creator of Humans of UCL, the interview is below: 


 “I have a medical condition known as Osteogenesis Imperfecta. It’s more commonly known as ‘brittle bone disease’. Essentially the proteins that comprise my bones are formed imperfectly, so the bones form in a raggedy fashion and that means they can snap very easily. I’m the first in my family to have it so it’s difficult to deal with. It’s also a very rare condition, especially in the UK, so it’s very hard to get advice about it.”

“Has your disability impacted you to be the person you are?”

“If I didn’t have a disability I wouldn’t be the person I am now. It’s driven me to be successful and to be motivated and to not give up. Because it’s so easy to give up with a disability, especially when you’re in the hospital and you live a shit life. But I think I’ve used it to my advantage to try and motivate myself to be more determined to be the best I can be.”

At this point his friend noted that he was the marketing officer for UNICEF on Campus, among other things. So I asked: “What are you involved in now?”

“I’m the marketing officer for UNICEF on Campus, and I’m also the SSEES Committee welfare officer, and I’m a member of the Youth Advisory Panel for the Royal College of Paediatrics and Child Health – I advise the UK government on healthcare policies involving children and young people. I administer and do talks across the country, advocating the voices of young people, which are voices that aren’t often heard. And I lecture at King’s College and Greenwich University to medical and nursing students, teaching them about how to best manage long-term medical conditions. Lastly, I teach people conversational English at the language centre.”

“And what do you study?”

“I’m a first-year BA Politics and East European Studies student – I’m 19.”
 

My first event with the RCPCH YAP was on Monday 23rd April 2012, which is nearly 2 years ago now.  I wasn't aware when I first got invited to take part in this event that I would join the YAP at the RCPCH. In an interview which I gave after this event I said the following:
"I was so excited about attending the event, it was great to meet other people and hear their experiences as I don’t get to do it very often. It’s was positive to hear everything that’s going to be done to improve paediatric services and I look forward to seeing how our ideas."
http://www.rcpch.ac.uk/news/rcpch-young-spokesperson-comments-childrens-services and comments shape the service
Some of our ideas included:
• Visiting patients, parents and carers locally to support their engagement in the project
• Creating on line webinars and forums to enable patient and carer input & communications about the project development
• Listening to their input and providing feedback.

During my first term at UCL I had the pleasure of being the opposition speaker for the motion 'This House has no confidence in the NHS'. Having been in and out of the NHS system throughout my entire life, I have a lot of trust and confidence in the NHS and I was adamant to speak in opposition to this motion. I was lucky enough to be given this opportunity by the oldest and most prestigious society at UCL, The Debating Society. A report written by my friend, can be found below. It was published in Pi Media, which is a magazine for UCL. 
http://www.pimedia.org.uk/this-house-has-no-confidence-in-the-nhs

For some of the arguments used by my partner, Chris Hopson: chief executive of the Foundation Trust Network, and I please refer the document below: 

I thought my first post should be one explaining more about me and what my medical condition in. In order to illustrate this better I shall be utilising a Youtube recording of a presentation I gave at King's College London in the Summer of 2013. It was the summation of my AQA extended project which I did as part of my A Levels and the question I answered was "Will there ever be a cure for Osteogenesis Imperfecta?"

Please click below for a copy of my report: