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!

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!

Doing My Bit!

I haven't had the best of years healthwise, infact I seem to be doing a tour of the UK's hospitals.

However, one thing that has kept me smiling, when I have been feeling poorly is my fundraising.

I like fundraising, especially doing it in fun ways and especially when it raises money to help other boys and girls.  I also like to show people that I can help others just as much as other boys and girls can.

I have three fund raising projects on the go at the moment.  You may have read about my Trike Ride For Kindred.  I am delighted that following a really generous donation of £2,000 by a very kind man who had read about me, I have reached my target of £5,000.  Infact I have exceeded it as I have raised
£5,970.00.  I hope this will really help Kindred, who provide lots of help and support for families whose children have disabilities.

The weather and my health have both been so awful that I haven't yet been able to complete my mile ride on my Trike around the meadows.  But I am determined to complete my ride as soon as I can, and who knows I might even raise some more. I think I need to see if I can complete my ride in the Chris Hoy Velodrome, as it is warm and dry in there!

My second fund raising project is for Bobath Scotland. I wrote about my visit there last year in an earlier blog.  They provided therapy for boys and girls from across Scotland and I wanted to help them keep up their good work.  As I love books I am holding a Book Bring and Buy for Bobath Scotland.  I am asking people to bring along books they have finished with and to buy some "new" ones, with all the proceeds going to Bobath Scotland.  The Book Bring & Buy will be at 11am-1pm on Saturday 20th October, 2012 in St Mark's Unitarian Church, Castle Terrace, Edinburgh, EH1 2DP (off Lothian Road).

I have also asked some famous authors to donate sign books to raffle at the sale.  I was so excited when I received a sign copy of War Horse from Michael Murpurgo and then Ian Rankin sent two signed books and also Clare Balding. I'm hoping I might get one or two more.  Some people wanted to buy tickets who won't be able to go to the Book Bring and Buy, so mum has set up a Just Giving Page so that people can buy raffle tickets on line.  Here is a link to the page, if you would like to buy tickets.
http://www.justgiving.com/Adam-Bojelian1

My third fundraising project is still hush, hush, but it is the most exciting yet and I will be able to tell you all about it very soon.  I think you will be excited too, when you hear what it is and hopefully it will get your toes tapping.  I'll tell you all about it as soon as I can.....