Tag Archives: Holby City

7 things to do in hospital when you’re 8 (& 3/4)

Two weeks in hospital is long enough to challenge the sanity of any adult, let alone that of an 8-year-old who is used to being on the go all the time.  As well as his daily visits to the hospital school, M was fortunate enough to have a number of other activities to take part in, which helped wile away the ever-lengthening hours.  I don’t know how many of these same opportunities, or others like them, are available at children’s hospitals across the country, but this is a selection of some of those M chose to do during his stay at GOSH:

Pets as Therapy20141209_131336We were lucky enough to have 3 separate visits from 2 of the amazing “Pets as Therapy” dogs, Molly and Woof.  These charming animals are specially chosen for their gentle manner and make regular visits into hospitals, care homes and special needs schools to bring a great deal of comfort and love to those in the greatest of need.  I wrote a blog post not so long ago about just how much calm and comfort M draws from our cats at home and I saw the same things happening as he was able to pet and cuddle both dogs in his own space in hospital.  G was lucky enough to also have the chance to meet and fuss Molly as she visited on both Saturdays whilst Mike and G were visiting, and both children were encouraged to offer her treats for her patient behaviour when she was with them.

 

ScoutsscoutsThe visit to the 17th Holborn Scouts and Guides at Great Ormond Street Hospital was one of the highlights of M’s last hospital stay in 2013 and since finding out he was due another admission, he had talked of little else.  His biggest disappointment was that he was admitted on a Wednesday as Scouts meet every Tuesday evening and he had to wait a whole week before he could go again. During the evening, they provide a range of different crafts and games which are tailored for the differing ages and needs of the children attending that week and even reward regular attendance, an important boost for those children who are there on long-term admissions.  Sadly, M only managed to make one meeting again this year, but is already asking when he can go to Scouts again!

 

Courtesy of gosh.nhs.uk

Courtesy of gosh.nhs.uk

Saturday Club – Every Saturday afternoon, the activity centre (located next door to the school) is opened to patients and their siblings and friends for a couple of hours of crafts, games and some much-needed time together, away from the constraints of the ward.  On our first Saturday in hospital, M wasn’t keen on venturing too far from his bed, but the arrival of 2 of the Saturday club play volunteers, who engaged him and G in some riotous games of “Extreme Uno” as well as giant snakes and ladders, convinced him to change his mind.  By week 2, both G and M were chomping at the bit to join in the fun and whilst the staff there helped my 2 celebrate G’s 11th birthday with some rather nifty face-painting, an elegant birthday crown and Christmas crafts galore, Mike and I were able to escape for a sneaky 45 minute catch-up over coffee and cake in the hospital restaurant.

 

Courtesy of scholastic.co.uk

Courtesy of scholastic.co.uk

ReadWell book trolley – This was a treat we almost missed during our first week as the trolley came round as we were enjoying the ballet at the Royal Opera House, but thanks to some near-perfect timing, we stepped out of the lift just as the trolley was about to leave the ward.  M was able to choose from the wide selection of books displayed on the trolley and took great pleasure in being able to spend some time before deciding on an author we had not come across before.  To his absolute delight, not only did he have a free choice of books, but he also got to keep the books he picked out and he has enjoyed reading them since we got back home.  M also had the chance to create his own story with one of the ReadWell workers, who came into the school and acted as scribe as he weaved his adventurous tale of aliens visiting earth.

 

20141214_105928Ward Playroom – Whilst this was not the biggest room in the world, it held a vast array of games and activities to entertain the most particular of children.  M played on the Wii, found new board games to master and was able to borrow a DVD player and DVDs to watch over the weekends.  We made Christmas decorations, painted pictures, experimented with creating circuits with a science kit and M even decorated a ceramic money-box as part of his Christmas present to G.  20141214_105916

 

Courtesy of magicfree,net

Courtesy of magicfree,net

Magic – As well as a fleeting hello to the Clown doctors as we passed them in the ward corridor, one afternoon was brightened by the promise of a visiting magician.  M sat enthralled with a small group of his new hospital friends as this talented gentleman performed one awe-inspiring illusion after another.  He invited both children and parents alike to participate in some of the tricks and wowed us with his skills.  He listened as the children asked him questions about what he was doing and even watched M perform a rope trick of his very own.  My Dynamo-wannabee loved every moment of the show and dissected the tricks at length afterwards, trying to work out the secret of how they’d be done.

 

20141219_184138Post – Last, but not least is an activity that had nothing to do with GOSH itself, but everything to do with the amazingly thoughtful family and friends who were determined to bring a little cheer to our dreary corner of the long-term gastro ward.  Messages came from around the world – Canada, Madeira and across the UK – and each was special in its own way.  M received get well cards, postcards, books, stickers, games and other gifts that were guaranteed to entertain him day or night.  We decorated his bed space with the cards and added a Christmasy feel with the decorations that we had made in the playroom.  Knowing that people were thinking of us, loving us and sending us get well wishes and prayers sustained us both during the most difficult moments of the admission and brought some much-needed sunshine on the darkest days.   From the Christmas card from M’s class at school, to 2 pages of messages from Mike’s cousin and her friends and colleagues in Calgary; from cards and presents from our friends at church, to a card from the lovely members of my choir; and the 2 extra-special gifts of Angry Birds Jenga from our fabulous FABED family and signed photos and scrubs for both G and M from Holby City, courtesy of Simon Harper, my man at the BBC; all the mail was gratefully received and enjoyed hugely by us both.

                        20141220_193939

The Message from “My Man” at the BBC

Three weeks on from that episode of the BBC’s hospital drama, Holby City and I’m still reeling from the amazing response to my blog post and the unexpected bonus of two phone-calls with series producer, Simon Harper.  When I penned my heartfelt response to what Mike and I had watched on-screen, I expected to reach a few more than my usual readership and dared to hope that I might beat my previous “top score” of 186 readers in a 24-hour period with my letter to our local hospital.  I never dreamed that over 2,000 people across the world would read, comment on and share that plea for responsible portrayal of chronic illness in the mainstream media.  As well as sharing my thoughts through my blog, I made a formal complaint to the BBC and, through the wonder of Google, managed to track down Simon Harper and sent him an e-mail, expressing my concerns about the inaccuracies about EGID portrayed in that episode.

Courtesy of bbc.co.uk

Courtesy of bbc.co.uk

I didn’t expect to hear anything back, so you can only imagine my surprise and absolute delight when Simon not only replied to my e-mail, but also offered to pick up the phone and discuss the matter with me.  We agreed a day and time to talk and I spent the week making notes and talking to fellow EGID parents through FABED and other on-line forums to get their points of view on what I needed to raise in my conversation.  That first phone-call lasted for around 30 minutes and at no point did I feel that Simon was keen to close down the conversation and finish the call,  He was genuinely interested in learning more about EGID and understanding why this episode had caused such distress in the on-line community. We spent a long time discussing the difference between “intention” – what the program was trying to portray – and “perception” – what the viewing public understood – when it comes to producing a drama for television viewing and here Simon explains it in his own words:

The intention: “the guest character’s general allergies were a dramatic smoke screen to the actual underlying cause of his pain, neuralgia – but that in no way were those allergies supposed to suggest a condition as specific and, as I now know from talking to you, severe as EGID.  In no way was the story supposed to say that EGID was in fact just neuralgia!“.

The perception:I think it comes down to one scene where Zosia (the doctor) mentions that Nigel’s eosinophils are up –  due to his general allergies – and she then goes on to mention “his eosinophilic gastro-enteritis”.  What I can see maybe wasn’t clear was that Zosia, excitedly bandying round theories and possible prognoses at this stage of the story, is in fact supposed only to be raising EGID at a possibility at that moment.  perceptionA possibility that, in fact, turns out not to be the case.  But I can see that the phrasing “his” – combined with the fact that dramatically speaking, we never see Zosia rule out EGID (a moment we assume happens off-screen) – could have given the wrong impression.  It’s a tough call with medical drama – you never play on-screen every single beat of medical treatment that would happen in real life, choosing the moments which best serve the story,  and sometimes rely on the audience’s imagination to assume and deduce. It’s a delicate balance, and there is definitely a lesson to be learned here, because evidently, missing out that moment has in this case given the wrong impression.

I also mentioned my concerns that a range of inflammatory bowel diseases had appeared to be ruled out through a simple ultrasound, whilst those of us living with this family of illnesses know, from our first-hand experiences, that endoscopies, colonoscopies and biopsies are the only reliable ways to confirm a final diagnosis.  The conversation ended with an agreement that Simon would spend time investigating what research was done, talking to the consultant concerned and checking out the ultrasound situation before phoning me back a week later to talk some more.  I was struck by his commitment to unpicking where and how things went so wrong and have to confess to being cheeky enough to send another e-mail, thanking him for his honest discussion with me and pointing him in the direction of various EGID websites, so that he could truly understand what our families deal with on a daily basis.

A week later and that second phone-call happened.  Another 30 minutes valuably spent clearing up those outstanding points, including his agreement that the discussion regarding the ultrasound came across as far more definitive than was their intention.  I have to say I’m impressed with the research into EGID he had done during that week and appreciate that he took the time to properly review the research done originally for the program.  Finally, and definitely most importantly, he has sent a huge apology to our EGID family and I truly believe it is a heartfelt one.

apology

Courtesy of psmag.com

I repeat,  I  am absolutely aware that despite all this, an upsetting impression was given due to the way EGID was referenced and never ruled out on-screen and there is absolutely a lesson to be learned there for the future.  I can’t undo any upset caused, I realise, but do so hope I have been able to reassure you that we take the medical research aspect of HOLBY with the utmost seriousness and that in this instance, it truly was not an instance of inaccuracy, but, I think, a point of clarity that had an unforeseen impact on how the story came across.

 I truly have enjoyed our conversations, as not only did I get an education on the condition that  your son,  you, your family and many others are so courageously living with, but, as a producer, it is always absolutely invaluable to get insights on how our story intentions actually translate to an audience member –  that gives us great help in the way we tell our stories for the better to make HOLBY an entertaining but hopefully also stress-free hour!  And I do hope that you will continue to watch and enjoy the show.

A big thank you to Simon Harper for his willingness to be open and honest about the research done for this storyline, the errors of judgement made in the production, to talk to me not just once, but twice and his apology for the upset unintentionally caused.  As one of my fellow EGID Mums asked (and I wholeheartedly agree):

Any chance they’ll get Mr Allergy (grrrrrr) back and do a proper episode on EGID?

Simon, I wait for your answer!

Dear BBC Controller

Sometimes something happens that leaves me lost for words.

Having heard the furore on Facebook from fellow EGID parents, Mike and I sat down last night to watch Tuesday’s episode of “Holby City” on the I-player.  To say that I was speechless as the drama unfolded would be an under-statement; to say that by the end I was fuming would be a gross denial of the feelings that it had caused.  My hackles started to rise from the moment we were introduced to the character later described acerbically as “Mr Allergies” and we both sat in stunned disbelief as the storyline ended with everything being cured by a rapid diagnosis and a special injection.

For those of you who aren’t Holby City fans, or who didn’t have the misfortune to catch it when it aired on Tuesday night, let me give you a quick precis.  A young man, portrayed from the start as little more than a time-waster and with a list of allergies as long as your arm, is admitted into the hospital.  Nobody can pinpoint what’s wrong, but the doctor in charge of his care recognises that his symptoms fit with EGID.  She performs that little-known-as-highly-reliable diagnosing tool of an ultrasound (!) to rule out Crohns disease and Diverticulitis and comes to the conclusion that it could possibly be EGID, but is more likely to be a mental health issue due to him craving being a “rare” individual and the attention that obviously affords him.  On the basis of all this, and having given him leaflets about planning his own funeral, she tells him it’s a previously unidentified trapped nerve, gives him an injection and within minutes he’s up on his feet, completely cured and feeling better than he has in years.

If only M’s life were that simple.  If only a simple injection could take away the pain and acute discomfort that M struggles with on a daily basis.  If only I could tell him that the magic wand we both are longing for has finally appeared and all his hurt and frustration and despair will be gone, just like that.  If only it was likely that since he was small, my distraught 8 year-old has been craving nothing more than extra attention by being a medical rarity.  If only I’d known that it was all in his mind, or, more likely, all in mine as I’ve known from babyhood that there was something very wrong.

It has taken 7 years for us to reach a diagnosis, bypassing multiple doctors who thought it nothing more than a bad case of toddler diarrhoea and a somewhat neurotic mother.  Even though we now know his chronic illness by name, lack of funding and research means that we still don’t have any answers and every step taken with GOSH is a step of faith that something will help at some point. Every day I meet with people who have no idea what EGID is and the impact it can have on the family as a whole, let alone on my 8 year old himself.  Most of the medical staff we see have never heard of the illness, do not understand the subtle nuances of this hidden disease and have no idea how much we all need their help.  And we’re not on our own.  There are over 300 other families who look to FABED for support and share the highs and lows of this illness with each other, as we can understand like no outsider can; and that’s just in the UK.

 I’ve done my bit:

I’ve made my complaint known – via Twitter, via Facebook and via the BBC online complaints system – and I’ve written this blog.  BUT the damage is done.  Nothing is going to be able to take away their careless portrayal of EGID to the 5 million who watched Holby City on Tuesday night.  I would love to meet the researchers and writer for Tuesday’s episode to understand who they spoke to and where their information was sourced.  The daily battle that M and other EGID children struggle with bears no ressemblance to what was shown, but sadly that is the viewpoint the public will now hold.  I would love for them to spend time living life in the shoes of an EGID family, even for a day, so they could experience a fraction of the living hell that that life can be at times.  To comprehend the heartbreaking decisions we EGID parents have to make and the challenges of restricted foods, bowel problems, chronic pain and a multitude of daily medicines our babies deal with.  This type of inaccurate and frankly irresponsible representation of a serious illness is not what I associate with the BBC and it is left to parents like me, who have enough daily battles to fight, to raise awareness and voice our concerns.

You can do your bit too:  Just share this blog.  Make your family; friends; colleagues; strangers in the street aware of it and the rare illness that affects children like M and families like mine.  I don’t mind how you do it – RT it; link it to your Facebook page; send it out to your email address list; print it out and pin on noticeboards around your town; or get it emblazoned across the sky – but please do it and help us get our voice heard.