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.

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.

My Achievements

In addition to being a truly perfect & wonderful son, grandson, nephew, Godson, cousin & friend; excelling at mainstream school; campaigning for better lives for disabled children & young people; composing music; writing poetry; excelling at quizzes; raising many thousands of pounds for charity; bringing happiness and joy to the lives of many, Adam has achieved:-

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

Talk at Scottish Parliament 2012

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

Appeared at Edinburgh Fringe Fedtival 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

Honorary Clown Doctor - Dr Saturn

Appeared on TV globally; in most UK newspapers and on BBC Radio Scotland, Leeds & Solent

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

Happiness - A Poem for Kirsty

Disability Matters Rap for Royal College of Paediatrics & Child Health

Following his death Adam was named as a Patient Leader who made a significant contribution to the NHS in the Health Service Journal's inaugural Patient Leaders List

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

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

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) 

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

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!

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