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. 


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



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:-

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!

Friday, 26 April 2013

What Does Good Care Look Like?

The Thoughts of Adsthepoet

I am 13 years old and I have spent more than half my life in hospital.
I've seen the best and the worst of the NHS and stayed in five regional Children's Hospitals; Southampton General; Edinburgh Children's; Yorkhill (Glasgow); GOSH and Leeds General. The care I have received in all these hospitals but one has been outstanding.  In that one, some of the care has been wonderful but some has sadly been awful. The bad care has made me ill, sad and very very scared.  I've told mum I never want to go back to that hospital again.  Last time I was there they discharged me saying I was well, but I was so poorly that I been in the great hospital where I am now for almost a month and doctors thought I was so ill I may not survive. Thankfully, I am now getting better.

I think everybody should have good care, so to help, I thought I would let you know what, from my experience I think makes good care.

In the good hospitals:-
1) Staff talk to me and involve me in decisions about my care. They ask me about what I want and don't want;
2) Staff talk to mum and dad and ask them about me;
3) Staff talk to each other and pass on important information about me;
4) If staff don't know something they are not afraid to say and ask someone who does know, sometimes that might even be me or mum and dad;
5) Staff treat me as an individual and recognise the things I can do, they don't jump to negative stereotypes and prejudices about me, because I am physically impaired; 
6) Staff have time for me, they are friendly and chatty and make me feel as if I matter;
7) Staff are friendly and chatty to mum and dad, they work with them, they treat us all as if we matter;
8)I'm never left alone when I'm seriously ill and never in a room with the door closed so staff can't see me;
9) When I'm really ill doctors come quick and do everything necessary to make me better, I'm not left critically ill for hours without care;
10)  I always feel that I am getting the best care possible, I'm never made to feel like a second class citizen for whom it doesn't matter if I live or die.

In the bad hospital they do the opposite and worse, that is why I never want to go there again, but want to send a big THANK YOU to all the staff at that hospital who have given me good care and to all the staff at the other hospitals- You are the best!

Adam Bojelian
26th April, 2013

Wednesday, 20 March 2013

World Cup Winner

I wrote this poem for my home study English course, I had to imagine I was scoring the winning goal in football match, hope you like it:-

World Cup Winner

With aching legs and a heart full of pride,
The noise of the crowd left nowhere to hide.
The clock was ticking towards the end of the game,
If it stayed a draw, it would be a shame.
In my nation’s shirt, in the heart  of  Brazil
Scoring the winning goal would be such a thrill.
In the heat of Rio, I dive for the ball,
But it hits the post, I feel such a fool!
I rally my strength and run up the pitch,
I use my right foot, avoiding a hitch.
The ball floats through the air and over the line,
The feeling inside of me is simply divine.
The ref blows the whistle, the crowd shout and scream,
I’ve scored the winner, I’m living the dream!

(c) Adam Bojelian 2013

Wednesday, 6 February 2013

Jamie and the Ceeiabs - A Modern Myth

Here is the short story I wrote for my English course, it took me quite a long time and a lot of effort to write it, so I hope you enjoy it:-

Jamie was riding his bike through the park.  Although it was June and the weekend before his school was due to break up for the summer, the weather was cold.  Jamie was wearing his wellingtons, his jeans and a red and green striped jumper

Jamie rode his bike through the park, his red hair blowing in the wind.  As he peddled, Jamie suddenly noticed he was being chased by a small Jack Russell dog. Jamie increased his speed to try and get away from the dog.

Suddenly Jamie skidded, he veered off the path directly into the pond.  As Jamie plunged in, something very strange happened, it was dry under the water.  Jamie fell down to the earth.  It was very dark, just enough light to see.  Jamie landed on the ground gently. He looked up and realised he was surrounded by some strange looking people.

The people around him were called Ceeiabs (pronounced Chi-abs), although Jamie did not know this.  They were the size of humans; their heads very similar to humans, but everyone was wearing a beanie hat, the hats were all different colours.  Everyone of the Ceeiabs had seven arms and one leg with two wheels at the bottom.

There must have been about fifty Ceeiabs surrounding Jamie.  They were all taller than him.  Jamie felt scared, he did not know what was going to happen.  He had lost his bike and all the Ceeiabs were staring at him, but not saying anything or making any noise.  That made Jamie even more scared. Some of the Ceeiabs started playing with Jamie’s hair.

Just as Jamie was beginning to panic, one Ceeiab came towards him from out of the crowd. He was exactly the same as the others, except he was not wearing a beanie hat, he was bald.  The bald Ceeiab waved to the others to go away, but they just stood and stared at Jamie. The Ceeiab then pushed Jamie sideways through the crowd, Jamie was terrified. The Ceeiab used his seven arms like swords to make a path through the crowd. The other Ceeiabs were so surprised they did not fight back.

Once through the crowd Jamie began to run, he could go much faster than the Ceeiabs on their small wheels.  But when Jamie glanced back, he saw the friendly Ceeiab being chased by all of the other Ceeiabs.  Jamie didn’t know what to do.  Should he run off by himself or go back to help his new friend? Jamie knew the right thing to do was to go back to help.  He ran back to his friend and dragged him by one of his arms, pulling him along behind him.  Together they escaped from the other Ceeiabs. 

Once Jamie thought the unfriendly Ceeiabs were far enough away he stopped running.  He was out of breath. Jamie had been running with the Ceeiab for about five minutes and they had travelled almost a kilometre. 

Just as he was feeling more comfortable, in front of him Jamie noticed another group of Ceeiabs.  At first he felt scared again, but they waved to him and his new friend, with all their seven arms.  They looked really happy and friendly. His friend waved back with his seven arms and also looked really happy.  It is clear to Jamie they knew each other. Jamie pulled his friend over to the group.  The Ceeiabs all hugged each other.  Jamie’s friend introduced Jamie and all the other Ceeiabs started hugging him.  Jamie was delighted he has got his friend who had helped him, safely home. He then wondered how he would get safely home himself and felt scared again.

Through the group of Ceeiabs a small Ceeiab, about Jamie’s size appeared pushing Jamie’s bike.  Jamie noticed that the handle bars were a bit bent, but otherwise it looked fine.  The Ceeiabs encouraged Jamie to get onto the bike. His new friend, the bald Ceeiab also handed him a navy blue beanie hat, which Jamie put on his head.  Jamie climbed on to his bike and peddled hard. As he did he felt the bike rising up out of what would have been the pond.  Jamie turned and waved to the Ceeiabs, they all waved back using all their arms. They all looked happy.  As he peddled Jamie got higher and higher, until he found himself out of the pond and back on the path where he had been chased by the wee dog.  Jamie was very happy to be back.  He was surprised by his adventure, he wondered if he had imagined it, but he could feel the navy blue beanie hat on his head, so he knew it had been true.

(c) Adam Bojelian 2013

Friday, 1 February 2013

Caledonia Dreaming

My school asked me to write a poem about Scotland for Burns Night (25th January) and here it is:-

Caledonia Dreaming

What is Scotland? Tourist say
Saltire, tartan and Hogmanay.

But what does Scotland mean to me?
Mountains, handsome cities and roaring sea.

Without Scots inventors where would we be?
No telephones, no penicillin and no T.V.

Our footballers may not bring much joy,
But my sporting heroes are Murray & Chris Hoy.

Edinburgh's Book Festival is my favourite place to go,
I love meeting great authors, Duffy and Morpurgo.

I love my friends at Forthview school,
Making me laugh, acting the fool.

But best is mum and dad, my cousins too, and
Charlie Dog sniffing out at bone to chew.

Scotland is not a country of fried Mars Bars.
It is a great nation, full of shining stars!

(c) Adam Bojelian 2013