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)

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

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

Lullaby to celebrate birth of Prince George

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

Wednesday, 20 November 2013

Happiness, A poem for Kirstie

Happiness is the people I love,
Happiness is the things that I do,
Happiness is the books I read,
What does happiness mean to you?

Mum, dad, cousin Nads,
Granny, Grandad, Charlie too,
Friends, caring nurses and doctors,
Who are the people bringing happiness to you?

Tweeting, chatting, watching sport,
History, science and English too,
T.V, quizzes, festival shows,
What are the happy things you do?

Sunshine, holidays , Christmas lights,
Hugs and kisses, time with friends,
River boat trips and happy memories,
I hope your happiness never ends! 

(C) Adam Bojelian 2013

This poem was written for @kirsti79 who very
generously placed the winning bid in my write
a poem auction for Children In Needs. Thank you
Kirstie I hope you like your poem. 
Special thanks also go to @RobWebster_LCH who
kindly also donated his loosing bid to Children In Need. 

ARE YOU LISTENING NHS? HERE IS A TEST FOR YOU... ( A post by Ads' mum)

Those of you who follow Adam on twitter or are regular visitors to this blog will know Adam spends a lot of time in hospital, about half his life.

Adam has had care in hospitals up and down the length of the UK, care that has ranged from the very best, to the very worst of what the NHS has to offer.  Thankfully the hospital where he is currently falls into the first of these categories, staffed by caring, compassionate staff who treat Adam as a much loved, bright teenager and do all they can to help and support him and our family.

Adam is now 13 years old and one thing that has become very clear is how difficult the NHS finds it to cope with a child with the complexity of needs Adam has.  Francis, Berwick and Keogh all call for patients to be at the centre of everything; for services to meet the individual needs of individual patients, but the more complex the patient's health,  the harder this seems to be.   There has been a lot of focus in response to Francis, Berwick and Keogh to meeting the needs of frail elderly patients with complex needs, just as there should be, but very little about children and paediatrics.  About the need to meet not just the health needs of children and young people who have such difficult health problems that they spend large parts of their lives in hospital, but also their psychological, physical, social and educational needs.

Systems at present are set up to meet the needs of children with less complex needs, (and service provision for many of them is far from perfect), not those with the very most complex and demanding needs.  For example, a child with cerebral palsy who can attend school each day receives regular physio, occupational therapy and speech and language therapy.  The same child who is regularly in hospital does not, despite the therapists being based at the hospital.  Since our move Adam's educational input has greatly improved and he now does get a daily teaching session while in hospital,  but we know from bitter experience that there are parts of the UK, where irrespective of a child's educational potential this does not 
happen. The local children's hospice where children with complex needs go for respite, can not provide one to one support overnight, so those who need one to one overnight care, i.e. the children where respite is most greatly needed, can not use it.

As a mum you hear a lot of talk about "joined up services", but the reality, even in parts of the country with "good" provision is often very different.  The NHS still operates in its silos, managers still sit around tables debating as to which budget funds should come, all arguing that it should be any fund but their own.

Even the exciting "Make A Wish" type treats arranged for sick children tend not to be granted to children with very complex health problems.    For children unlucky enough to have hospital acquired infections (thankfully the wonderful doctors now treating Adam have got rid of the HAI he previously had for a good (or perhaps that should be bad) 10 years elsewhere), even visitors are limited in some hospitals.  This can mean the children most in need of a visit by Clown Doctors, local sports stars or entertainers are the very ones not to get one!  Ironically, Adam was made a honorary Clown Doctor, Dr Saturn, when we lived up north, but he was not allowed a Clown Doctor visit, when he was in hospital!  To illustrate how daft things are, he was allowed to see the Clown Doctors out of the hospital, despite still having the same infections.  He was also not permitted to use the playroom when he was an in-patient, but was often asked to wait in the same playroom, with the same HAIs, if he attended as an out-patient.

Inevitably a child with very complex needs will require care from several specialties.  However, ironically, because a child is in hospital he or she will miss out on this care.  In our experience all hospitals seem to cancel out-patient appointments if a patient is in the hospital.  Some, but not all consultants will come to see the child on the ward. When the consultants don't, the child misses out on input from that specialist, no matter how much it is needed.  If a child, like Adam is frequently in and out of hospital, it can mean the child NEVER gets to see the specialists.  Hospitals record the appointment as "MISSED" even if the department is told the child is an in-patient.  The child then has to be re-referred and goes back to the bottom of the list.  Inevitably, by the time the new appointment comes up the child is back in hospital, so the whole cycle starts again.  Months, years pass and the child never gets to see the specialist.  The same can happen with investigations and scans.

We are told our NHS is now a listening NHS, listening to patients and their families.  This is exactly the type of problem it is easy to see can very obvious to patients and families, but has perhaps been by-passed NHS staff.  Yes, Adam does have particularly complex needs, but he is not alone in this and I would not be the first person to say, "if the NHS can get things right for Adam, they will be getting things right for most children and young people".  So lets see, can the NHS solve this problem for Adam and in doing so, hopefully for other children and young people likewise living with the most demanding of health?

NHS it is over to you!

Saturday, 28 September 2013

A POEM FOR LEEDS CHILDREN"S HOSPITAL APPEAL


HAPPY BIRTHDAY !

Happy Birthday, lets have some fun,

Its party time, the mayor has come!

Us boys and girls can't wait to play,

We're so excited to share your day,

We want to thank you for all you do,

You help make us better and pull us through.

All the fundraisers are so cool,

You make life better for us all.

Like all Leeds staff you are the best,

So happy 3rd birthday, now have a rest!

(C) Adam Bojelian 2013



You can read more about the wonderful Leeds Children's Hospital Appeal and if you like give them a donation for their birthday HERE

Friday, 30 August 2013

A Lullaby For A Royal Prince




Earlier this year, during Children's Hospice Week, the Duchess of Cambridge visited Naomi House Children's Hospice in Hampshire.  I used to visit Naomi House when I was very wee.  Although that more than a decade ago, staff have kept in touch and like reading about my achievements.  Following the Royal visit I was contacted by the editor of Eduzine, the brilliant magazine that celebrates young people's achievements and who were covering the Duchess' visit.  They asked me to write a lullaby for the Royal Baby.

When I was a baby I loved listening to Mozart (I still do) so I chose a piece of music I thought would sound good as a lullaby and then I wrote my lyrics.  I had to include two alternatives, as I didn't know if the baby would be a boy or a girl.

You can read my lullaby and also all about the Duchess' visit to Naomi House in the latest edition of Eduzine:- http://www.eduzine.org/

The magazine has also published my short story Jamie and the Ceeabs as the first chapter of their never ending story......

If all this is not exciting enough, Urban Voices UK are now working with Eduzine to record my lullaby in various musical styles.  it will be released to raise money for brilliant charities working to improve the lives of children & young people.

Follow me @Adsthepoet @Eduzineinfo and @UrbanVoiceUkCom to keep up to date with the latest developments with my Royal Lullaby.

Friday, 28 June 2013

A Change Is As Good As A Rest

In less than a fortnight I will be moving south to a new life in Yorkshire.  I am really excited to be moving. I'm looking forward to starting a new school and making new friends and I am looking forward to much better healthcare.  I'm also looking forward to being able to visit by grandparents much more easily.  

I am looking forward to exploring Yorkshire, getting to know cities like York and Leeds and enjoying fresh air and beautiful countryside.  I love history, so I am especially looking forward to exploring all the historic sites and learning more. I looking forward to being able to go to London easily, not just to see friends and family, but also to visit all the museums, galleries, see Chelsea, go to Wimbledon and go to the theatre.  There is so much I want to do.  I've also heard about the Museum of TV and Film in Bradford, which has an exhibition about films based on children's books, I am definitely going to go there.

I came to Scotland when I was 18 months old to be closer to my auntie and her family.
I have packed a lot into the last 12 years.  

I would have loved the opportunity to go to school much more, I absolutely love school and learning new things and I always try my very hardest, so I have been very sad that more has not been done to provide me with more schooling and education.  Until I was 10, most of the time I had none at all and since then I have mostly had just two hours a week.  At times when I have been well to attend school but I haven't been able to do so as no nursing cover has been provided.  I even wrote to the CEO of my health board, but he never replied to me.

I feel as if my health problems have been used as an excuse for not providing me with support. There have been lots of times when I have been too poorly to go to school but not too poorly to learn and would have loved to have been able to learn more.  I noticed when I was in hospital that other children did get a teacher every day, it was the children with disabilities who did not, which I think is really bad.  In other places all children get daily hospital teaching, not just the non-disabled ones.  When I was in hospital in Leeds earlier in the year the hospital teacher came to see me every day, even when I was really poorly.  At Yorkhill as soon as I was referred the teacher there saw me everyday, so it seems to be a particular problem in Edinburgh.  If some one reading my blog has the power to change things so that all children in Edinburgh get hospital and home teaching everyday if they are not well enough to attend school, I will be very happy (although they may not be if iike me they don't love school)!  Thankfully my mum, dad and my nurses have done all they can to encourage me to learn as much as I can, even if I haven't had much proper education.

I have met some wonderful doctors, nurses and therapists, but I have also had really awful times, with doctors insisting I was not ill and even leaving me to "crash" before giving me proper care; doctors not bothering to review me in A&E claiming I wasn't particularly poorly, leaving mum and dad to drive me in the middle of the night 50 miles to another hospital to get the care I needed - in that case PICU and ventilation for almost three weeks.  I have been left alone in rooms in hospital having seizures, with no care and support and absolutely terrified. I have been left out of all the fun things that happen in hospital, even though I spend much more time there than most patients. Perhaps one the worst things has been doctors who say really nasty things about me, in front of me, thinking I can't understand and who never talk to me, I really hate that!  I will miss the good nurses and doctors who have looked after me, but I certainly won't miss the bad ones, I wish I had never met them, they have really hurt me too often.  I really hope I only meet good nurses and doctors once I move.

But life in Scotland has had good times too. I have loved going to the Book Festival, listening to brilliant authors talking and meeting them.  I have been every year apart from one, when I was in hospital for the whole time, so I have been to 11 book festivals.  May be one day I'll come back to the Book Festival with my own book of poems!

I have absolutely loved the time I have spent at Forthview School.  My class and teachers there are absolutely brilliant and I will really miss them.  

I have loved raising money for organisations that support children with disabilities, especially thinking of fun ways to do so. I have raised almost £10,000.  I hope my efforts have made some difference.  When I move I want to continue my fundraising, I really do enjoy it.  I am already going to help the Leeds Children's Hospital Appeal by volunteering at the Leeds 10K, they are going to find me a job I will be able to do with some help from mum.  Fingers crossed it doesn't rain!

I have won a number of awards while I've been here:-

2010 Brit Writers Outstanding Achievement
2010 Gold Blue Peter Badge
2011 Young Scotland Rising Star Award
2011 Scottish Book Trust/Jacqueline Wilson runner up in short story competition
2012 Young Scot Arts Award
2013 Amnesty International runner up song lyrics competition

I was also included in the Scotman's List of people who had put Edinburgh on the map in December 2012 and included in the Independent on Sunday's Happy List in April 2013.  I suppose that is not bad for a 13 year old.

I've loved writing my poems and short stories.  It often takes me a long time to write, sometimes several weeks to write a poem, but doing so makes me very happy and I hope my poems have made other people smile too.  Christmas Gibbons getting to number 2 in the iTunes Children's Music Chart was really exciting too.  One day I would like to get an illustrated book of my poems published, if people bought it I would donate part of the profit to charities so that as many children with serious health problems could benefit and use some to buy a system so that I can use a computer by blinking. I would use it for school work and to write more poems, stories and song lyrics.

There are lots of beautiful places I have enjoyed visiting, the Borders, Perth, the Botanics, North Berwick and St Andrews just to name a few.

I have loved going to the theatre, my favourite was seeing the Snowman Ballet a long time ago, lots of the children's shows in the fringe and the pantomime.  I loved going to lots of the Children's Classics Concerts at the Usher Hall, the pirate one was particularly brilliant.

The Museum of Scotland and My Dynamic Earth are both places I have spent many happy hours and I always love going to Holyrood Palace.  The staff are always really friendly and helpful there and I love listening to the stories about all the old kings and queens.

Visits to the Scottish Parliament have always been fun, I particularly enjoyed the day I was asked to tell the Labour MSPs about my experiences in hospital.  I was also very proud that I inspired an exhibition of art work by disabled children for Contact A Family.  I have had letters of congratulations for my awards from the Queen, the Prime Minister, The First Minister and the Children's Minister.  I'm surprised how many MSPs seem to know my name, I hope that they use my experiences to make life better for other boys and girls in Scotland.

I will miss all my friends young and old, but I hope all my friends in Scotland will keep in touch and continue to fight to make Scotland a better place for all children, but especially those with serious health problems and disabilities.

Good bye Scotland and thank you for all the good times!