Monday, 28 July 2014

A Letter to UK Paediatricians


Dear Paediatricians

I have seen on twitter and heard from my mum that you have been asked to vote on 
30th September on whether your Royal College should grow to include a Foundation of Child Health.

It may seem strange to you, but mum and do chat about these things.  What happens with paediatricians in the UK is important to me, may be even as important as it is for you, as my life depends upon it.  Without wonderful care from well trained, educated and knowledgable paediatricians I would not be here today.

The vote on 30th September is important to every child and young person in the UK, so if you possibly can please do get there and vote.

Mum knows more about the new plans than most parents, as she is  Chair of the College's Parent and Carer Advisory Committee.  She explained  earlier this year why the proposed Foundation of Child Health is so important.  This is what she said:-

"I want to say why these recommendations are, I believe, SO IMPORTANT. 

My son Adam is 14, he is just one of the UK's 11 million children & young people for whom these recommendations are, in my view, crucial. 

The recommendations not only protect the College's CORE STRENGTHS, of the training, education and professional development of its paediatrician members, but they also TRANSFORM the College's governance, making it fit for the second decade of the 21st centuary and beyond. 

But perhaps the most important thing the recommendations do, is recognise the modern face of medicine, and make children and young people, rather than the doctors caring for them, paramount. 

My son Adam lives his life on a knife edge. He is hospital today, he has been in hospital for the last six months. He has spent over half his life in hospital. We have lived around the UK. Adam has had care in 2 DGHs, 2 tertiory hospitals and three specialists childrens hospitals. 

His health is complex, difficult & unusal, which means he has seen the very best and the very worst of the UK's health care. Adam and therefore my family depend on high quality care from well trained, well educated, well regulated, happy and motivated paediatricians more than most. Adam's life literally does depend on the continuing success of this College. 

But Adam, like all children, is much more than the sum of his health conditions. He is a bright, much cherished boy. Like all children, he relies on a broad team of multi-disclinary professionals to give him a good life. All children do. All children have teachers; all children rely directly or indirectly on the expertise of psychologists, child rights specialists, nurses, therapists, voluntary organisations, play specialists; GPs and many more.  

Sick and disabled children rely on an an even broader community of experts. Not just on an individual day to day basis, but at policy and strategic level. 

As Sir Ian Kennedy has argued for many years, medical decisions are no longer purely clinical decisions at an individual or national strategic level.

Members of this college can not make best interest decisions without including expert colleagues from a multitude of professions in those decisions. 

At its most grim, how many times have you heard of a tragedy involving a child where the failure of muli- professional agencies to engage is found to be at the core of the problem? 

Have you ever heard of a tragedy where too much multi-professional engagement was the key cause? No me neither. 

The College's Young People Advisory Committee and the Parent Carer Advisory Group are firmly behind opening up this organisation to multi- professionals and the goverance reforms. 

 Why? because we live daily with the consequenes  of failed policies due to the right questions not being asked to the right people; the multi-professional experts, together with children, young people & their families. 

Both the goverance and the foundation recommendations are about modernising the college, bringing it up to date with modern day practice and putting children and young people's best interests at its very centre. 

Professionally, as a lawyer, I have been involved in number of reforms of organisations. I became the Chair of PCG in October, so came late to the Goverance Review Board. What has struck me from my very first involvement, looking on "through the lens of a lawyer" is the highly professional, diligent way the college has managed this process. 
Due time and consideration has been taken.   The breath and depth of the consultation process with college members and others is most impressive. Views have been canvassed and fears and questions addressed in an impressively professional and dignified manner .

Earlier this year  Adam was the face of a NHS Change Day campaign supported by the College, encouraging all health staff to engage with child patients. The tag line for that campaign is "it is about me" 

Those 4 words sum up really well why these recommendations are so important to all the UK's children and young people.  It is them who are paramount and I believe, as well as safeguarding the future of the college and the wonderful dedicated paediatric profession, these proposals are , as they should be, about them -our children & young people. 

Thank you"

So please get to the EGM to vote on 30th September if you possibly can.

Here is the link to register:- http://www.rcpch.ac.uk/events/extraordinary-general-meeting

Many thanks 

Adam 

Monday, 16 June 2014

My Going Home List

I'm really looking forward to getting home after being in hospital for almost a year.
These are some of the things I'm looking forward to doing:-

1. Go for long walks with Charlie Dog
2. Have my cousins to stay
3. Go to London
4. Go to Liverpool
5. Go to Edinburgh Book Festival
6. Ride my bike
7. Go to school
8. Go to Whitby
9. Do some more fundraising
10. Do some baking 
11. See my Granny
12. Have a party
13. Have a church service
14. Go on a river boat
15. Ride a horse
16. Writes some poems
17. Make some films
18. Plant a vegetable garden
19. Build a wild life pond 
20. Write some short stories
21. Go to some museums & galleries
22. Go to the park
23. Make some new friends
24. Take some photographs
25. Write some blogs
And more

Wednesday, 4 June 2014

My #FUNFUND for LEEDS CHILDREN'S HOSPITAL APPEAL #WeAllMatter!

If you have visited my blog or follow me on twitter @AdsthePoet you will know one of my hobbies is FUNdraising.  I like to put the FUN into FUNdraising.

At the moment I am fundraising for Leeds Children's Hospital Appeal, the hospital I have been in since September 2013. That is a long time to be in hospital, especially if like me you are in isolation.  I want to thank the staff at Leeds for the wonderful care I have received here.

The nurses, doctors and all the staff are brilliant, but I do miss out on FUN!  I miss going to school, I miss doing fun things and I miss seeing my friends and wider family,  Luckily my TWITTER friends are really good at keeping me happy and connected to the world. I had a brilliant twitter birthday party, but more FUN would make my life so much better.  I want to flourish not just survive!

I am sure there are many other boys and girls in my hospital who would also like more FUN. The Leeds Children's Hospital Appeal does a great job, but to me it seems that often the same hospitals and or the same wards always seem to benefit from charities and the same hospitals and wards always seem to miss out, for example when celebrities are fundraising or visiting.  To me that seems wrong.   It is brilliant that the children in those hospitals and on those wards get such good facilities and FUN, they should, but I don't understand why ALL children and young people in all hospitals and in all wards shouldn't share in the FUN, also have fun visitors and lots of entertainment too. #WeAllMatter! 

So I want to CHANGE THIS, starting with my ward and my hospital.  I want ALL children and young people in Leeds Children's Hospital, but most especially those who have long stays & who are very poorly to have lots of fun, entertainment and visitors.  It shouldn't depend on your medical condition or your geographical location whether or not you have FUN when you are in hospital. Fun is too important for that.  In particular it seems WRONG that it is the children who are often in the most and the the longest, with neuro-disability like me who are the ones who are missing out most! WHY? #WeAllMatter!

If you would like to help create a #FUNFUND so that ALL the children and young people in Leeds Children's Hospital can have FUN, here are some things you can do:-

You can join in my #WorldCup2014 Sweepstake, raising funds for Leeds Children's Hospital Appeal.




You can see how to do that HERE

You can also sponsor my mum, who is running the Leeds 10K for Leeds Children Hospital Appeal HERE



Once I am out of hospital, with the help of my TWITTER friends I also want to organise a concert in Leeds to raise money for my #FUNFUND for Leeds Children's Hospital Appeal.  Do get in touch via twitter @AdsthePoet if you are able to help organise this concert in anyway.

Also once I am out of hospital CharlieDog is going to help me in lots of FUNdraising events, such as a dogolympics and a dog themed quiz.



I want to send a HUGE THANK YOU to my friends Eduzine Global and @Futureistex for supporting me by funding raising for Leeds Children's Hospital Appeal. You are awesome!

THANK YOU for all your support!  Lets ensure ALL children in EVERY hospital have the best life they can.


PLAY IS A RIGHT, NOT A LUXURY, AS THIS BRILLIANT FILM SHOWS:-



THANK YOU!

Ads

#FUNFUND  #WeAllMatter!

Thursday, 22 May 2014

My Latest Commission : A Poem on NHS Leadership

Thank you Rob Webster for asking me to write this poem.
It took me a long time to do, but I really enjoyed doing it.
I drew on my experiences good and bad as a NHS patient.

Monday, 19 May 2014

An Important Annoucement from Young Epilepsy


Media Release 


High-street fashion giant takes on epilepsy
Charities Young Epilepsy and Epilepsy Society have partnered up with fashion retailer River Island during National Epilepsy Week (18-24 May) to help raise awareness of this widespread condition by launching the campaign, ‘Everyone knows someone’.
The ‘Everyone knows someone’ campaign is designed to get everyone talking about this hidden condition; this will help understanding and reduce the stigma that is faced by over a half a million children and adults living with the condition. The charities, along with River Island, will be encouraging everyone to visit www.everyoneknowssomeone.org.uk

Online, everyone will be able to read real life epilepsy stories, and complete an epilepsy quiz for a chance to win a £500 River Island shopping spree.  River Island will also be giving away a free 'Everyone knows someone' wristband with online orders during National Epilepsy Week.

Epilepsy can affect anyone of any age but is most commonly diagnosed in childhood or later life. On average there is one child with epilepsy in every primary school and five in every secondary school, and it can seriously affect their personal, education and home lives. Young Epilepsy and Epilepsy Society have a vast array of resources that can help parents, children, teenagers, schools and universities to provide the best form of care for those with epilepsy.

Ben Lewis, Chief Executive at River Island said; “River Island is gladly supporting the ‘Everyone knows someone’ campaign for a second year. It is so important to raise awareness of this hidden condition that effects so many of our staff and customers.

“Young Epilepsy and Epilepsy Society are doing a fantastic job at supporting young people and their families that are affected by the condition and I am proud to be part of such an important campaign.”
Carol Long, Chief Executive at Young Epilepsy, said; “The ‘Everyone knows someone’ campaign is a fantastic way of increasing the awareness of epilepsy, a misunderstood condition that can have serious implications on a young person’s life.
“Working with River Island we will be able to spread epilepsy awareness to even more people across the UK. Our hope is that one day that people with epilepsy will not face stigma and that they won’t feel the need to hide their condition.”
Dr Sallie Baxendale, Consultant Neuropsychologist at Epilepsy Society said: “This initiative with River Island is a great opportunity to raise awareness of epilepsy. Once you start talking about epilepsy it’s amazing how many people know someone with the condition. Greater public awareness is one of the biggest issues for people living with the condition. Busting the myths and misconceptions will help banish the stigma people with epilepsy often experience."
Follow ‘Everyone knows someone’ on Twitter @EKSepilepsy or Facebook/EKSepilepsy
-ENDS-
Notes to editors

For further information, please contact

Josh Dibble on telephone: 01342 832243 ext 432.  Email: jdibble@youngepilepsy.org.uk
Amanda Cleaver on telephone: 01494 601 404. Email: Amanda.Cleaver@epilepsysociety.org.uk


Facts and stats
Epilepsy is the most common serious childhood neurological condition. There are 60,000 children and young people under the age of 18, and 112,000 aged 25 and under, living with epilepsy in the UK.
On average there is a child with epilepsy in every primary school and five in every secondary school.
There are around 600,000 people in the UK diagnosed with epilepsy. That’s about one in every 131 people. There are around 50 million people with epilepsy in the world. Around 75 people are diagnosed with epilepsy every day.

Thursday, 27 March 2014

My Achievements


After my eventful day yesterday, I wanted to share with you some of my achievements and thank everyone that has supported me along the way:-

Blue Peter Badge 2009

Brit Writers Award 2010

Gold Blue Peter Badge 2010

Scottish Book Trust/ Jacqueline Wilson Short Story Comp (runner up)

Poems exhibited at Scottish Parliament 2011

Young Scotland Rising Star Award 2011

Young Scot Arts Award 2012

Named in "The Scotsman's" "40 people who put Edinburgh on the map" 2012

Amnesty International Protest Song Comp (runner up) 2013

Named in Independent On Sunday's "Happy List" 2013

Commended Blog North Awards Best Young Blogger 2013

Eduzine Global ACE Young Achiever 2014

Young Epilepsy Inspirational Hero 2014

Also

Poetry Editor and Global Ambassador for Eduzine Global

Young Ambassador for Readwell

Lyric writer of "Christmas Gibbons" peaked at no. 2 in iTunes children music chart Dec 2013

Commissions

Poem to celebrate Yorkhill Children's Foundation 10th Birthday

Poem to celebrate Leeds Children's Hospital Appeal's 3rd Birthday

Lullaby to celebrate birth of Prince George

Poem on Leadership for NHS Confederation CEO

Inspirational Verse for Leeds Rhinos


Saturday, 22 March 2014

Twitter: My Window On The World



10 Reasons Why I Love Twitter

Being in hospital, especially if you are in for months on end and in isolation can be very lonely. I really miss my cousins, my friends, going to school, getting out and about and Charlie Dog. 

But with Twitter I can:-

1) find out easily what is going on in the world;

2) share my life with people;

3) share my poems and stories;

4) makes friends all over the world;

5) talk with people I wouldn't otherwise have a chance to talk to;

6) take part in things that I otherwise wouldn't be able to take part in like #NHSChangeDay and #ChildrenInNeed;

7) go straight to the top and talk directly to people with power;

8) tell people about the reality of my life;

9) celebrate Christmas, birthdays & special occassions with friends; and

10) not be isolated and lonely. 

Thank you Twitter and all my wonderful Twitter friends!

Find me on Twitter @Adsthepoet

Friday, 7 March 2014

A Motivational Verse For Leeds Rhinos



I was inspired to write this verse when the Leeds Rhinos visited me in hospital at Christmas


We are on a mission,
It is our ambition,
To win the Super League,
We are the Leeds Rhinos,
In us you can believe,
We concentrate, we focus,
We commit to take the lead,
With hope and joy we strive to win,
We know we shall succeed!

(C) Adam Bojelian 2014

Tuesday, 18 February 2014

A Poem For NHSChangeDay




Nurses, doctors, patients, families,managers,clerks,
NHS people are on their marks.
The big, the small, the fat, the tall,
They are coming to Machester
To help us all. 
They are making their pledges,
They are coming together,
They are improving and changing
And making things better.
Pledges ordinary, pledges extraordinary,
Pledges about care, whether coronary or pulmonary.
Pledges by children, pledges by medics,
Pledges about talking,  pledges about ethics.
People are pledging because they care,
We love the NHS and need it there. 

(C) Adam Bojelian (2014) 

Thursday, 16 January 2014

Happiness Goes Global




Eduzine has gone global so do log on to the brilliant new site to read positive news about young achieves around the world:-

http://www.eduzineglobal.com/

Check out the Eduzine Global Achievers:-

http://www.eduzineglobal.com/70/13/eduzine-global-young-achiever-awards-2014


Don't miss me reading my poem for @kirstie79 Happiness using my iPad voice:-

http://www.eduzineglobal.com/88/144/happiness-in-audio