Thursday, 28 November 2013
The bravery and spirit shown by a Norfolk teenager in his battle against a rare duo of cancers has moved many over the last few months.
Deryn Blackwell, 13, from Watton, has been in hospital in Bristol since February after undergoing and recovering from a bone-marrow transplant which doctors hoped would treat his leukaemia and Langerhans cell sarcoma.
However, after weeks of waiting, the Wayland Academy pupil was told the donor’s marrow had failed to graft and his last chance would be to have his own bone-marrow stem cells put back in.
Over the last few weeks the family have been waiting patiently to find out whether that had worked.
Today, Deryn’s mother Callie Blackwell has posted a Facebook update on Deryn’s progress, which she has given us permission to reproduce.
“I don’t know where, how or even if I should start this post...
I need to write it down for me, I express my feelings through my words and as I write this, I am considering whether or not I will share it. Perhaps it should just be for me but then we have been supported by so many people over the years so I feel that I owe it to you all to keep you informed.
“Yesterday we were called into the quiet room yet again, away from Deryn yet again and yet again there were four Dr’s.
“The Dr’s have been talking about Deryn, as they do three to four times a day and they have all come to the agreement that Deryn’s last bag of cells is very unlikely to graft given the fact that it’s been 30+ days with absolutely no count.
“They talked a lot about supporting him now, giving him what he needs to help him the best way they can so that he is comfortable and in as little pain as possible.
“I can write this very matter of fact and you may be thinking that I am cold and heartless but I feel detached when I write, this is not my boy I am writing about - I feel that this is a story I am writing and I am now writing the last chapter.
“The granulocytes are going ahead, not now because they feel it may kickstart anything but now because they would like Deryn to be infection free as much as possible so that he can pass peacefully and not in pain and full of infection.
“I think the main reason for their chat was to let us know that we now need to start thinking about what happens IF Deryn is overcome by an infection in the very near future.
“Do we want him to go to PICU where he will be kept alive, the infection possibly made better by a series of tubes and drips when if he were to come out of PICU, he would still be no better off than he is now. Effectively it would be just prolonged the inevitable.
Do we want to let him go?
“That isn’t something we can really know just yet, I have that need to do everything we can for him, even if we know that it will be pointless.
“I can’t just let him go like that when there is even the tiniest of chances that he might be the first person in over 35 years to graft after 30+ days.
“They expect to see anything, IF there were to be anything from the Grans after 10-14 days so they are willing to let this go on for another two weeks and they will review again.
“If nothing new has happened then that’s it - we move onto palliative care.
“We could keep Deryn alive for some time yet with blood transfusions, platelets and granulocytes from various donors but this is just another form of life support, it’s an artificial process. The only way we can keep Deryn alive long term is if he can produce his own blood cells and at the moment, he can’t.
“This has gone on long enough, he has fought for long enough and endured far more than anyone should ever have to. It would not be fair to keep Deryn alive through artificial means, to what ends would it be?
“It doesn’t feel real - it feels like there was someone else there in that room listening to those words.
“But I know it’s real because I look at my boy, my little baby boy who will be 14 on Sunday and will be forever 14 and I cry. I cry because it hurts, it physically hurts and I can’t make it stop - no one can.
“I cry because of the lost potential, I cry because he could have been something wonderful, he IS something wonderful and this just is not fair.
“We walked back into Deryns room and he said “Please don’t cry mum, just tell me what they said”
“So, I told him - he just smiled and said okay.
“He’s at peace, he’s accepted this, I believe that he’s truly not scared or worried because he has had a long time to think things over and if anyone can teach me that everything is as it should be, it’s my brave boy.
“We are going to visit the hospice on Thursday, Deryn initially didn’t want to go but today he said that he would like to go. He feels that it would be for the best to go there if he doesn’t graft. I asked him if he were sure, we can wait until he’s seen the place before we need to make any decisions. He looked at me and said that he would rather go there because he doesn’t want Dylan (Deryn’s younger brother) to find him.
“Although that wouldn’t happen, he doesn’t know that and yet, even now - he is thinking of his brothers feelings and thinking of how we all will be.
“I keep crying and he keeps saying to me to not be upset and to just carry on as normal. I’m not to worry because it won’t change anything.
“Dylan has had a very hard time of it today, he was crying in the bathroom and when I opened the door, he stood with tears streaming down his face with his fists clenched - he snarled and then punched the mirror.
“He is so torn inside, we’ve put him through all of this too but we will all get through this as a family - we’ve got this far.
“Deryn has taken us all on such a wonderful journey but I will never regret the years I had with him, but I’m selfish and I want more!
“I know there is a tiny chance that he may pull some sort of Deryn miracle out of the bag but in all honesty, I’m a realist too, I don’t think that is going to happen now - I want more than anything for him to prove me wrong.
“I would give my own life if it meant that he could have one but I feel that this is the beginning of the end of this path for Deryn - he has taken us all on such a journey but we are nearing our destination.
“I envy Deryn in many ways, I envy his peace and I envy him because he will be forever innocent - he’s never going to be tainted, hurt or have to realise just how cruel this world can be. He has suffered so much but he has never complained, he has always seen it as his duty and something that he chose to experience.
“I am in awe of Deryn and I never want him to leave me but unfortunately, we don’t always get what we want xxxx
“Thank you all so much - please don’t leave us yet though, this journey isn’t over yet xxxxxxxxx”
If you can help the family or want to follow their daily progress, visit www.doeverything.org.uk or follow them on Twitter at www.twitter.com/_DoEveRYthiNg
Reproduced from the EDP24 website.
Sunday, 29 September 2013
Try Changing Fuse No 32! It may be fully or partially blown....this causes strange behaviour in the central locking system :-)
Thursday, 29 August 2013
Thursday, 8 August 2013
Well, after an eventful few weeks in which Scarlett has had to be fitted with a new radiator,battery and clutch cable (which was due to breakage and an eventful 21 mile drive home minus clutch facility!), we are now on the verge of attending the umpeenth Scirocco register meet at RAF Cosford (yaaaaaay!!)
Did not attend last year due to numerous obstacles and events, the worst of which was the passing of my lovely mum Jill after her valiant and inspirational 7 year fight against Ataxia (Dementia).Love ya mum :-)
This year, against a backdrop of numerous other setbacks and obstacles it looks like we may just make it to the gathering :-)
Tomorrow sees the car being valeted by Matt who has done me a very good deal for both car and trailer (saves my back and head...which i am always banging whilst hoovering the interior!).
Hopefully, (notice how positive my attitude is!) i will begin the drive down to the White pump farm campsite sometime after 2pm to meet up with many old, and some new friends.
I will post a report ...sorry, that sounds far to grand!...a roundup of the proceedings and post a few pictures to boot.
By the way. HAPPY BIRTHDAY RACHEL! to my eldest daughter who will turn 19 whilst i am away at the meet on Saturday.
Watch this space :-)
Had a short but enjoyable National show and met many of my old Scirocco mad mates again...and a few new ones to boot :-)
Took the opportunity to do a little fund raising for Leukaemia and Lymphoma Research on the day (it would be rude not to...especially when your car has their name on it!) and managed to collect a very respectable total of £132.75...brilliant !!
Thanks to all my fellow owners who made contributions, and a special thanks to my best friend from Holland Sander who bought the framed limited edition print of my Scirocco, signed by Sir Ian Botham, for a very generous £50! Top bloke :-)
Sunday, 30 June 2013
Murray Walker, the legendary voice of motor sport is performing (is that the right description?) a talk in August 2013 to raise money for another Leukaemia Charity called Leukaemia Busters (UK).
If you would like to go and see Murray (my all time favourite motor racing commentator by the way!). Follow the link below.
Tickets are selling fast!
I would love to go but sadly I will be with my family in Norfolk enjoying a well earned rest in the lovely resort of Hemsby !.
If you happen to read this Murray, hope you are well and well done for supporting a very worthy cause :-).
Saturday, 22 June 2013
Source: Daily Mail.
Hi Folks.Hope you are all well and 2013 is being good to you so far!.
Just a quick heads up that a story that I submitted to the Leukaemia and Lymphoma Research website has, much to my surprise!, been published :-0 !! lol.
If you haven't already seen it, here is the link:
Please tell me what you think. I appreciate the feedback :-)
Friday, 21 June 2013
Tuesday, 14 May 2013
I am delighted to report that after an absence of nearly a year and a half, Scarlett is now fully taxed,tested and insured and has returned to the road as my daily driver :-)
Still sporting the graphics from the 2010 Leukaemia and Lymphoma Research 50 th anniversary celebration, although these will be being removed and replaced by a new design which is currently being devised by my good friend Benn Perry.
Watch this space....something is in the pipeline...will post details soon.
Monday, 22 April 2013
I will continue to post as often as possible, but please bear with me....life is a little tough right now....but i will resume normal service ASAP.
Tuesday, 22 January 2013
Business Management Team
Operational Planning & Delivery Division
Date 14 January 2013
Thank you for your Freedom of Information request received on 3 January 2013.
Q1 How long is the training about mental health conditions (in
hours)for DLA Decision Makers?
Q1a How long is the training about mental health conditions (in
hours)for ESA Decision Makers?
Q2 What is the completion rate of this training?
Q3 How and by whom is it delivered?
Q3a Who accredits the training?
Q4 How are the training outcomes for mental health conditions
Q5 What mental health conditions are covered during this training?
Could you also answer these question specifically relating to ADHD
for both DLA and ESA Decision Makers.(please could you provide
separate answers if the training differs according to benefit)
Q6 How long is Decision Makers training about ADHD (in hours)?
Q7 How and by whom is the training on ADHD delivered?
Q7a Who accredits the training?
Q8 How are the training outcomes for ADHD training
In answer to your questions
In respect of decisions concerning medical or disability issues, DWP Decision Makers receive learning in respect of the gathering and using of evidence including evidence provided by medical professionals. The extent of medical knowledge required by a Decision Maker is dependant on the benefit or allowance decisions made.
Q1 How long is the training about mental health conditions (in hours) for DLA Decision Makers?
As the majority of their applicants do not undertake a face-to-face assessment with a medical professional. DLA/AA Decision Makers require a more in-depth awareness of a range of disabilities and conditions They receive approximately 40 hours of training spread over ten half-day learning sessions of which two relate to Mental Health conditions: Session Four - Depression and Anxiety Disorders and Session Five - Schizophrenia, Bipolar Effective Disorder and Personality Disorder.
Q1a How long is the training about mental health conditions (in hours) for ESA Decision Makers?
ESA Decision Makers do not need in-depth medical knowledge as they do not assess health conditions. Their role requires an understanding of the Work Capability Assessment (WCA) descriptors that indicate how a customer’s health condition affects their day-to-day functionality. This includes the Mental Health descriptors. This element of their learning was developed by and is delivered with support from Atos Healthcare who carry out the ESA WCAs. They attend a three hour learning event, Introduction to Working with People with a Mental Health Condition.
Q2 what is the completion rate of this training?
All DLA/AA Decision Makers have to complete the learning provided by Atos Healthcare.
Introduction to Working with People with a Mental Health Condition is pre-requisite learning for all staff who help customers, including, but not exclusively for, ESA Decision Makers. It is possible to quantify how many of the total numbers who have undertaken the learning are ESA Decision Makers but we estimate that the cost of complying with this request would exceed the appropriate limit of £600. The appropriate limit has been specified in regulations and for central Government it is set at £600. This represents the estimated cost of one person spending 3.5 working days in locating, retrieving and extracting the information. Under section 12 of the Freedom of Information Act the Department is not obliged to comply with your request and we will not be processing this part of your request further.
Q3 how and by whom is it delivered?
The sessions for DLA/AA Decision Makers are classroom based and are delivered by Atos Healthcare professionals.
Introduction to Working with People with a Mental Health Condition is also classroom based and delivered by DWP Learning and Development Officers.
Q3a who accredits the training?
There is no formal accreditation for this training.
Q4 how are the training outcomes for mental health conditions evaluated?
Decisions are regularly quality assured by line managers and calibration exercises are held to ensure consistency of Decision Making across DWP. Following their initial period of learning, Decision Makers continuously build their knowledge by accessing comprehensive guidance and reference tools.
Q5 what mental health conditions are covered during this training?
DLA/AA sessions cover depression, anxiety disorders, schizophrenia, bipolar effective disorder and personality disorder. Introduction to Working with People with a Mental Health Condition provides a basic introduction to generic mental illness and working with customers with a diagnosis of a mental health condition. Individual conditions are not covered.
Specific questions in respect of ADHD
There is no specific learning in respect of ADHD. However, in addition to the learning already described, the Department’s Health and Wellbeing Directorate, in conjunction with specialist medical experts, have developed guidance reflecting the latest medical understanding of the conditions covered. This guidance covers the common psychiatric disorders, includes guidance on ADHD and is available to both ESA and DLA/AA decision makers.
Section 21 of the Freedom of Information Act allows us to direct you to information which is already reasonably accessible to you. Information on ADHD is available on the on the DWP website:
If you have any queries about this letter please contact me quoting the reference number above.
DWP Central FoI Team
Freedom of Information Team
Contact DWP: www.dwp.gov.uk/contact-us/
Your right to complain under the Freedom of Information Act
If you are not happy with this response you may request an internal review by e-mailing email@example.com or by writing to DWP, Central FoI Team, Caxton House, Tothill Street, SW1H 9NA. Any review request should be submitted within two months of the date of this letter.
If you are not content with the outcome of the internal review you may apply directly to the Information Commissioner’s Office for a decision. Generally the Commissioner cannot make a decision unless you have exhausted our own complaints procedure. The Information Commissioner can be contacted at: The Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow Cheshire SK9 5AF www.ico.gov.uk
Monday, 21 January 2013
Friday, 18 January 2013
nuWhilst surfing "tinternet" today for reports about the recent forced landing in a field of a Grob training aircraft based at RAF Cranwell, i happened upon a report which described a very similar incident which occured 9 years ago in 2004!
Thank goodness no one was hurt in either incident, and,as a former flight line engineer, thank goodness it did not detatch whilst sat with engine running on the pan awaiting departure.....large chunks of proppelor flying around can wreck a ground crews day if it heads their way also!
Monday, 7 January 2013
You would certainly think so judging by this picture taken outside Mansfield Town FC's ground today.
Feel so sorry for the little lad. Not because of Mr Seurez(s!) total ignorance...but because the kid actually looks up with wonder and respect to his heros...shame Seurez doesn't give a toss about his fans in the same way :-/.
Friday, 4 January 2013
Bottle thrower 'wanted Bolt loss' http://www.bbc.co.uk/news/uk-england-20899073
So this bloke gets into the Olympic stadium, sits with VIP,s and chucks a plastic bottle which does no damage, hurts no one and .....well thats it really!.Except of course he lobbed it in the direction of Usain Bolt at the begining of a race.
How much time,effort and most imprtantly CASH,is being wasted to persue a conviction in a crime where no real damage was ACTUALLY done?....Except of course to someones ego!
DNA testing a bottle, CCTV footage....can you imagine that happening if you reported to a local bobby that " some bloke threw a plastic bottle (which almost hit me) whilst i ran down the street!".
Ashley Gill-Webb was a dickhead to do such a dumb thing, but, forgetting all of the " what if's", did he actually do any real harm?
It is reported that he was having some sort of " mental crisis"...yet the prosecution are choosing to circumvent this point of defense by asking how he then " planned" to carry out his "attack"!
Interesting to note that many news reports about the incident choose to omit the fact it was a light plastic bottle....instead they leave the reader to assume it was glass and therefore would constitute a much greater hazard.
Strangely enough,Usain Bolt shrugged off the incident and indeed says he never heard Mr Gill-Webb's "screaming" of abuse ( No racist insults by the way...he's not a premiership footballer!).
So what possible good can come of spending loads of tax payers money persuing the conviction of a bloke who, apparently whilst suffering a mental illness,decided, for whatever reason, to lob a plastic bottle at someone ?
Answer: To save face for a failure in security....."The best form of defence is offence" :-)
To see a pattern emerging all you need do is take note of the police response to the old lady down the roads house being ransacked and burgled ( gets a visit or 2 and a crime number) ,to the level of investigation and resource that gets allocated when Mr and Mrs toffee nose- Smythe get their mega value paintings nicked from their mansion!
Oh yeah....i forgot. It's not the crime that matters, it's how important the " victims" are!.
We have been trying to get my 9 year old son diagnosed for the last 4 years. It has been agreed by both an ADHD support specialist and a very experienced social worker that he exhibits all the traits of a child with Autism spectrum issues.
Our original visit to the Gp, followed by another to a Child phychiatric therapist was over 4 years ago and to the present date we are still awaiting an "official" diagnosis!
Best of all we have just been turned down for DLA ( Disability living Allowance) for the second time in 10 months as we don't have the afore mentioned "official" diagnosis and our son is therefore not on any nescessary meds!....chicken and egg/ catch 22!.
Mid 2012 i had several financial knockbacks. Firstly my wifes salary was halved and then in August,as my eldest child turned 18,we lost £180 per month Tax Credits and £40 per month child benefit.....this resulted in us having to arrange an IVA through our local CAB office and thus our better than average credit score lies in tatters.
In July my gas boiler was comdemned so we no longer have central heating and we have a leaking radiator in the living room...neither of which i can afford to get repaired or replaced!
I have not had a pay increase at work in almost 3 years yet our electric/gas is going up by £120 in 2013. My daily commute to work is now costing me £10 per day and the grocery bill is over £120 per week to feed our family of 5.
We had hoped to be awarded the lower rate of dla ( about £20 per week) to help keep us going...but that hope has now been dashed, although it appears that this descision made in Oct 2012 was not communicated to us until we made an inquiry about its progress on 3rd Jan 2013!.... well, why should they tell us....why would we be at all interested!.
To say i am a lttle p*ssed off would be putting it mildly. I AM REALLY P*SSED OFF!
I served my country for 12 years in the RAF and i have worked in the NHS for 17 years since demob....and i feel like my life is a sham right now because it is dominated by meetings, phone calls, forms and dealing with a VERY DEMANDING son....but the people at the DLA dept think it is just a ruse to make money.
Its not....its a desparate attempt to try and make ends meet, and if i am currently "treading water" and trying to keep my head above it, then the mental health services and the beaurocrats at the DLA are the ones who are standing on my face trying to drown me!
I have to ask myself...What is the point?