Tag Archives: Great Ormond Street Hospital

A Birthday Treat – Lemon Meringue cupcakes

This time last year, M was admitted into GOSH for scopes and he and I spent Mike’s birthday away from the birthday boy himself, leaving him to celebrate at home with the rest of the family. There was a point this year when I thought history was about to repeat itself as we’re once again waiting for an admission date for M, who needs further testing to try to sort out the games his body is currently playing. However, Mike’s birthday came, and went, with no sign of a phone-call from GOSH and I finally had a chance to make a long-awaited attempt at the Lemon Meringue cake I’d been dreaming of making last year.

Lemon Meringue pie is Mike’s favourite dessert and there was a time, many eons ago, when I’d actually make him one from scratch for his birthday treat. With the arrival of G and M, the general busyness of work and juggling the school-run alongside business meetings and the general day-to-day running of the household, I don’t think I’ve turned my hand to such a dish for at least a decade. Add into the mix, the newer challenges of egg-free meringues and MEWS-free pastry and it’s not been the easiest pudding to make. I attempted a cheesecake version for Fathers’ Day this year, but that didn’t quite go as planned, so I put my thinking cap on to see if I could figure out an alternative format for this popular dessert.

I settled on lemon drizzle cupcakes topped with vanilla butter-cream icing and small meringues. I’ve made Lemon drizzle cake before, but found that the rice flour made the sponge taste very granular and I was keen to see if I could improve the texture. I found a lovely recipe for vegan lemon drizzle cake and read around the options for replacing the flour to make the cake both gluten- and potato-flour-free. My final recipe included gram flour – an ingredient that’s been lurking in my cupboard for a while, but which I had yet to brave using – rice flour and tapioca flour and the end result was infinitely better than the last time, though some further tweaking to create the perfect lemon drizzle cupcake is needed.

I whipped up a small batch of my vanilla butter-cream icing and used it to secure the mini egg-free meringues to the top of each cupcake. I was delighted with how these cakes looked and M spent most of the day, and evening, before Mike got home from work, begging to try one to “just check it’s okay for Daddy!” I am assured by the family that the cupcakes were a huge success and so that’s another recipe added to my ever-increasing repertoire.

The Great ‘Flu Vaccination Debate

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It’s that time of year once again, when the NHS starts talking about ‘flu vaccinations and those of us with chronic illnesses – or who fall into one of the other qualifying categories – attempt to book our appointment before winter’s half over and we’ve already been laid low by the ‘flu. Somewhat astonishingly this year, both my GP’s surgery and I were quick off the mark in being organised and by mid-September, not only had my appointment been booked, but I’d also had the injection itself. They had checked my medical records and found that it didn’t appear that I’d ever had the pneumo-vac, which led to the unexpected double whammy of a needle in each arm during my 5-minute appointment. The only years I’ve not had the ‘flu jab in the past 29 years of my T1D life were those when I was pregnant and that was down to personal choice. My one experience of the ‘flu, caused by an inability to get an appointment before November, saw me laid low for the best part of 2 weeks by a bad bout of the ‘flu and Mike and my Mum were let to rally the troops on a daily basis. For me, the ‘flu jab is not an option – its a necessity.

Since having M’s diagnosis with EGID and learning more about the long-term nature of his condition as well as knowing firsthand all about life with a chronic illness, I started to investigate whether he should also be having an annual ‘flu vaccination to help keep him healthy. Our GP offered no opinion on whether he should have it or not, though he was more than happy to agree if we wanted to go ahead, and our GOSH consultant thought it a good idea, but something that needed to be actioned by our GP. It quickly became evident that Mike and I would be the ones making the final decision and so the hard work began. I started researching the pros and cons of the vaccination for M, but with one thing and another, including his admission to GOSH for more scopes, last year just passed us by and as we had survived the onslaught of winter colds and bugs reasonably well, I shelved the idea for another time.

Courtesy of blog.fromyouflowers.com

This autumn has sneakily crept up on me and with its arrival has come the need to revisit that discussion and make our decision. One of my main concerns was M’s egg allergy as the vaccines given are grown in hens eggs, which can cause an allergic reaction and that is something we need to avoid given M’s delicately balanced state of health right now. However, reading more on the subject (and trust me there’s a lot of information out there), the fact that M does not suffer with anaphylaxis, but rather a delayed reaction to egg combined with the availability of ‘flu vaccines with low or no egg content, I was reassured that it would be safe to give it to him.

Next I needed to consider whether to insist he has the traditional injected vaccine or if we should try the new nasal spray vaccinations, which are currently being rolled out across the UK for all children under 4. Whilst the nasal spray would certainly be easier to administer, the current NHS recommendations are that this is not given to children with a known egg allergy as there is simply not enough evidence to conclude whether it is safe or not. Much as I feel M needs to be protected against the ‘flu, I am not yet prepared to take an unnecessary risk whilst there are still alternatives available. We are struggling with his EGID at the moment anyway and adding an unknown to the mix could lead to repercussions that could affect us all for months.

So, it would appear that the debate has been settled. I have requested with our new GP that M is given the ‘flu vac and am waiting for the phone-call back to confirm that a low/no egg vaccine has been delivered to the surgery. Fortunately, M is astonishingly stoic about having injections, so I’m confident that he will take it with the minimum of fuss – it would be a whole other story if the child in question was G, but luckily we don’t feel she needs to have it too for the time being.

EGID – the real story

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I am still reeling from the astounding response to my last blog post, Dear BBC Controller. When I asked you, my wonderful readers, to share what I had written in a hope of raising some much-needed awareness about EGID, I have to admit to only expecting the odd person to possibly share the link on Facebook with a few of their friends and nothing prepared me for what happened next. From the 20 shares that I know about, that post gathered momentum and I experienced a fantastic demonstration of exactly what social media can do. Within 48 hours of publication, that blog was viewed by over an amazing 1,800 people across 33 countries and the statistics are still creeping up on a daily basis. I have been humbled by this response to my plea and I can do nothing more than extend my heartfelt thanks to you all.

One of the things I realised, however, is that I have never given a comprehensive explanation of EGID and that my last blog post may have left new readers wondering what on earth all the fuss was about. Those of you who follow my blog will have an understanding of how this chronic illness impacts our lives and for those who know our family personally, you have probably had a brief explanation of the disease along the way. In that last blog post I didn’t want to go into the finer details of what exactly EGID is, so now I want to set the record straight, so to speak, and explain in a little more detail M’s condition.

EGID, or Eosinophilic Gastro-Intestinal Disorders, are a complex and chronic group of digestive system disorders caused by an abnormally raised level of eosinophils within the gastro-intestinal tract. Eosinophils are an important type of white blood cell, which normally help the body fight off certain infections and parasites and are typically involved in attacking the causes of allergic reactions, thus protecting the body. In some individuals, the body produces too many eosinophils in a particular part of the GI tract, which leads to chronic inflammation and can cause extensive tissue damage in that area. It is currently thought that there is both auto-immune and genetic involvement in EGID, but further research will be needed to confirm these links. Like many inflammatory bowel diseases, EGID is a classic waxing and waning condition, meaning that the symptoms and their severity can change on a daily basis.

This family of rare diseases is diagnosed depending on where in the GI tract the elevated eosinophilic count has been found:

Eosinophilc Oesophagits (EE or EoE) – in the oesophagus and is the most commonly diagnosed form of EGID
Eosinophilic Gastroenteritis (EG) – in the stomach and/or small intestine
Eosinophilic Enteritis (EGE) – in the small intestine
Eosinophilic Colitis (EC) – in the large intestine (colon)

This last one is the type that M has been diagnosed with, which means he has, in typical M-fashion, a relatively rare type of a rare chronic illness. Statistics are not readily available as it was only first recognised during the first half of the 20th century, but over the last 20 years, cases have been recorded in the UK and there are currently in the region of 700 cases looked after at Great Ormond Street Hospital. This suggests around 2,000 diagnosed cases across the UK as a whole and there are also known cases of EGID in other countries, including Australia and Canada, with a starting point of 3,000 people diagnosed in the USA.

Symptoms of EGID include:

Diarrhoea
Constipation
Blood and/or mucous in the stools
Stomach pains
Lethargy
Mouth Ulcers
Rash
Asthma attacks
Sore throat
Joint Pains
Headaches
Vomiting
Nausea
Reflux
Failure to thrive
Sudden weight loss
Loss of appetite
Mood swings
Excessive sweating/body odour
Loss of colour in the skin
Dark rings under the eyes

None of these symptoms is exclusive to EGID and not all are experienced by all patients. We had noticed a number of these with M in the years leading up to his diagnosis and it was the odd combination of them – diarrhoea, poor weight gain, joint pains, mood swings, excessive sweating, body odour and dark shadows under his eyes – that led to our conclusion that this could well be what he had.

As eosinophils are part of the body’s response to allergic reactions, it comes as no surprise that many people with EGID also struggle with a varying level of food and environmental allergies. What makes it even harder is that these allergies can also wax and wane and therefore can change over the years. When M was diagnosed we were asked to put him on a MEWS (Milk, Egg, Wheat, Soya) free diet, which is a common starting point for those with EGID. Over the years, we have also had to remove gluten, potatoes, raisins and raspberries from his diet to try and alleviate his symptoms and we still don’t seem to have the answer to whether this list is complete or not. Some of the lovely families we have met through FABED have had to go a step further and remove all foods from their child’s diet due to a constant flare-up of their EGID. These brave children are now tube-fed an elemental diet in an attempt to help them feel better and grow stronger.

These families have to cope with numerous hospital visits, regular hospital stays, invasive diagnostic procedures such as colonoscopies and endoscopies, tube-feeding, colostomies, huge amounts of medicines daily and the unavoidable emotional fall-out from children who long to be just like their peers. All of this is why it’s important that the media realises that EGID is not about “Mr Allergies” and why such factually inaccurate portrayals of chronic illnesses are problematic for this EGID Mum.

If you are interested in finding out more about EGID, you can also look at these sites:

***Breaking news – today I received an e-mail response to my complaint from the Holby City series producer. He has offered to look into the research done for this story-line and will discuss it with me, over the phone, later this week***

Dear BBC Controller

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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.

Not a Universal success

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I wouldn’t blame you for thinking that we did nothing but Disney whilst on our hols, however we did venture to some of the other theme parks and attractions during our 2 week sojurn in Orlando. G and M were particularly excited about the prospect of visiting Universal Studios, or more accurately, the “Wizarding World of Harry Potter“. My enthusiasm was not so great, particularly given my poor experiences to date in trying to get hold of some, or indeed any, information about visiting the parks with my food-allergy duo. I found the website difficult to navigate and the information available on it less than informative. My first e-mail to them went unanswered and if it hadn’t been that both M and G were desperate to visit, I honestly think I might well have given up at that point. However, I eventually tracked down a helpful customer services rep, who phoned me in the UK and discussed our needs at length. She reassured me that they catered for food allergies and that we should encounter no problems when eating in the parks. I was interested in booking the Character breakfast at La Bamba cafe so that the children could meet a Minion and once again I was assured that we could mix and match the breakfast options to get a meal that was safe for both G and M. Taking it on trust, I booked the breakfast and pencilled in 2 days at Universal on our somewhat hectic schedule.

Mike imitating both Dave Minion and Gru at the character breakfast!

Our first day started well as we arrived in glorious sunshine and headed directly to Diagon Alley carrying a rucksack prudently packed to the gills with M-friendly snacks. Our first view of Diagon Alley was impressive with a multitude of shops selling everything a young wizard could want as well as the fire-breathing dragon atop Gringotts Bank. We headed into a nearby wand shop for both children to chose a wand to buy and then ventured off on a magical tour, following the map to find the location of spells for M to cast using his interactive Dumbledore wand. I even dared to sample a pint of Butterbeer as requested by my dear friend, F, but have to confess it’ll be the first and last time I do that as the drink was just too sweet for any of the family to enjoy. Disappointingly, as jaw-dropping as the “set” was, there really wasn’t enough to appeal to the younger age groups which we all found surprising. Nearly all the rides, apart from the utterly amazing Hogwarts Express that carried us between the 2 halves of the Harry Potter experience, were roller-coasters or simulators that were just too big and scary for my nervous pair.

I was also disappointed by just how commercial it all felt, especially the “unique interactive experience” at Ollivanders shop in Hogsmeade, which promised far more than it delivered. Just 2 children were selected from the crowd in the shop to participate in the amazing experience of finding out which wand was to be theirs; after all, as we all know “..the wand chooses the wizard…” (JK Rowling: Harry Potter and the Philosopher’s Stone). Not only was every other child in the audience disappointed not to be part of the action, but – call me a cynic – I don’t imagine many parents found it easy to then say no when their little darlings wanted to buy the wand that had chosen them in such dramatic fashion.

By lunchtime we had seen and experienced all that the Wizarding World had to offer and headed off in search of some food for our group. We left Hogsmeade, where the food queues were out of the door, bypassed yet another hard-sell when the magic show we had been ushered into turned out to be little more than an opportunity to buy 4 tricks for the price of 2 and ended up at the street markets of the Lost Continent. We stopped at what seemed a likely place as it sold hot dogs, something we had found was inevitably safe at all of the Disney parks and I queued to speak to what was possibly the most unhelpful server I have ever met and someone definitely not suited to a customer service role. She gazed blankly at me when I asked for allergy information about their food options and struggled to understand even the simplest of requests:

“Could I please have 2 hot dogs without the bread-rolls as I have 2 children with multiple food allergies?”

“What?”

“Could I have 2 hot dogs without the buns?”

“You mean you don’t want the buns?”

“No, just the sausages…the meat”

“You don’t want the buns?”

“No”

“Just the dog?”

“Yes”

“But no bun?”

“No. Just. The. Dog.”

“So, you don’t want the bun, just the dog?”

“Yes”

“Oh. I’ll have to check with my manager if we can do that.”

Our exchange on whether I could get fruit or vegetables as an alternative side to the bun and the fries went in a similar vein. I gave up any hope of intelligent discussion at that point and G and M ended up with a hot dog each – “just” the dog: no bun, no fries, no fruit and no veg, all for the princely sum of $15 plus taxes. Yes, that’s right, £10 for 2 sausages that barely touched the sides going down. Mike and my Mum picked out some safe looking bits of salad from their lunches, we bought a packet of crisps for G (another £2.50 there) and fed M from our own plentiful supplies, much of which had been got from Disney.

I’d love to say our experience got better, but it really didn’t. In “The Cat in the Hat” area, a place filled with lovely rides inspired by Dr Seuss books and enjoyed by us all, we came across a bakery selling the most amazing-looking cakes, biscuits and sweets guaranteed to tantalise the tastebuds. Some of them were gluten-free, but none of the them catered for those with more complex allergies like G and M and we left empty-handed. I had toyed with the idea of eating dinner in one of the restaurants at Citywalk, but again, of the 4 I had contacted ahead of our visit, only 1 came back to confirm they could probably cater for M’s food needs. Maybe we’d been spoilt by our experiences in Disney, but Universal was a real disappointment and if it hadn’t been for our prepaid and booked Character breakfast for our second day there, I doubt we’d have bothered going back.

Last minute checks

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Courtesy of bbc.co.uk

With the countdown started and just days to go, it’s all come down to those last minute checks and the final packing for our holidays. I am the queen of lists when it comes to going on holiday, especially when travelling with M and G and this year was no exception, though I have to confess that four pages of lists is a whole new record! The clothes were quickly sorted and I got to my main challenge: the suitcase of M-friendly foods and all his medicines.

My biggest concern was ensuring we have enough safe snacks with us for at least a few days as I’m not certain about what will be easily available once we get to the “House of the Mouse”. I don’t want to over-cater as I have no intention of bringing a suitcase of food back home with us, but I did need to be reassured that M would have enough to eat. I spoke to our lovely GOSH dietitian to seek her advice about the availability of free-from foods in the USA and she advised consulting the UK Coeliac Society website as a starting point as to where we might be able to buy them.

I also did some on-line research and discovered that an option I hadn’t even considered might be a great place to start – an on-line grocery shop. This is still a fairly new phenomenon in North America as I know from our Canadian family and friends, but I found that I could arrange for a food order to be delivered directly to our hotel on the day of our arrival, which would instantly reduce the need for Mike and me to find a supermarket straight away. I investigated a couple of options and settled on the Garden Grocer delivery service. This is not affiliated to one particular supermarket chain and for a little extra cost, they will visit more than one shop to find everything you need.

The website is not as slick as the ones I’m used to using at home – I am a big advocate of on-line grocery shopping as it saves so much time – but I have been able to find most things I think we’ll need whilst away. There was a much better selection of M-friendly cookies and cereal bars than in the UK and at a much better price too. As I’ve said before, it’s hard to be both frugal and allergy-friendly in the UK. Shop done and delivery slot booked, all I can do now is sit back and wait with my fingers tightly crossed.

A Grand Day Out

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If you’re a sports fan, then last weekend was the weekend for you: Wimbledon finals, the Tour de France in Yorkshire, World Cup quarter-finals and the Formula 1 British Grand Prix. Under normal circumstances, I’d be trying to grab glimpses of the tennis whilst dealing with the never-ending demands of homework and food, admist the cries of “Do we have to watch the tennis?” from G and M. This year however, saw a break from the norm and instead Saturday found me browsing the shelves of Milton Keynes’ library on my own as Mike and the children spent the day at Silverstone.

This amazing opportunity to watch the qualifying races for the British Grand Prix was thanks to the GOSH events and charity team, who work with Bernie Ecclestone and his team at Silverstone to fundraise for the hospital. They have been working together to raise much needed money for 10 years, raising a whopping £4million for the hospital. Each year they offer 30 GOSH patients and their families the chance to visit the race track over the 3 days of the Grand Prix event.

I first heard about the event on Twitter, where 140 characters offered parents and family of GOSH patients the opportunity to contact the charity’s office and apply for tickets for the event. I wasn’t convinced we’d get the tickets given there must be hundreds of children who’d love to attend, but I came to the conclusion that there was nothing to be lost in making the application. I filled the form in, contacted M’s gastro team to ask for an email supporting our request and confirming that he was fit and well enough to attend the day and emailed the completed form back in with my fingers tightly crossed. I hoped we might have a good chance as M said he wanted to go on the Saturday as 1) he wouldn’t miss school on the Friday and 2) he didn’t want to go on race day itself as we weren’t sure whether there’d be as much to do during the day.

We didn’t have long to wait and were delighted when Mike got the phone-call to say the application had been successful and 3 tickets for the Saturday were ours. M was very excited to be going and the opportunity couldn’t have come at a better time for him as he’s been struggling with some big flare-ups from the EGID recently as well as the introduction of 3 new medicines to his daily regime, which has been challenging for us all. The day had become a real focus for him and he was determined to have a great time there. It was also fantastic to be able to include G in the day out as she rarely benefits from M’s illness and is frequently relegated to second place as we try to deal with him. She was as excited as the boys and I hoped she would enjoy herself as much as I knew Mike would!

So, whilst my lucky trio spent their day meeting the likes of Eddie Jordan, exploring the Paddocks and the garages, polishing a F1 car and experiencing everything that Silverstone had to offer, I spent a quiet day on my own in Milton Keynes. I explored the shops, enjoyed lunch at John Lewis and spent a few idyllic hours peacefully writing my blog and reading in the library. The children have hardly stopped for breath since Saturday, telling me tale after tale about their grand day out and it’s all thanks to the hard work and generosity of those at both Silverstone and GOSH.

The Battle is won

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This has been a surprisingly difficult post to write. I’ve found it challenging to give the details of our progress over the last 4 months following my formal complaint to our local hospital about the poor treatment we received when we were there earlier in the year, without it sounding either overly clinical or emotional beyond belief. I’ve finally resorted to bullet-point format as the steps we’ve taken have been an important part of our journey with M that I want to share, but they don’t need any unnecessary waffle in the re-telling.

24-Feb-2014: Write a formal letter of complaint to the Patient Advice and Liaison Service (PALS) based at our local hospital, giving details of our appointment, what happened whilst we were there and our areas of concern regarding the care they’re refusing to offer to M.

Mar-2014: I also write to our local MP asking for his help in getting local hospital support for M and giving brief details of our poor experiences to date, including a copy of our formal complaint and my blog-posts, so that he has all the relevant facts to hand.

Mar-2014: Receive an acknowledgement of my complaint from the hospital, who advise they are looking into the matter and will send a formal response by the end of April 2014.

Mar-2014: Our MP’s secretary calls from Westminster to express their dismay at learning about our experience and to offer an appointment at his next local surgery to discuss the matter further and to see how he can usefully support us in our quest to get local input for M.

Mar-2014: Receive a copy letter from the General Paediatrician we saw in February giving details of the appointment and what next steps they suggest are followed to help M. Given the date of the letter and the way it is written, it is blatantly obvious that it has been written with my complaint in mind and does little to reassure me that this medic will be fighting M’s corner going forward. The letter stresses that they are concerned about our request for shared care, but that they will refer M to one of the gastro consultants based at our local hospital to see if he will help.

Mar-2014: Same day that we receive the letter from the last doctor, I meet with our MP to seek his advice. He listens with a sympathetic ear and immediately offers to do whatever necessary to ensure M is given the chance to receive local support as well as the care from GOSH. In the light of the letter received, he proposes that we wait to see what the formal response from the local hospital is and whether the referral is successful or not. He also asks that I keep in touch with his secretary and let her know how things progress.

April-2014: A month passes without much movement on either the complaint or the referral front. I contact our GP to ask him to also refer M to the gastro consultant as I am still lacking confidence that the hospital doctor will do a favourable referral given the nature of my complaint. During this wait, we have a planned appointment at GOSH and I am able to discuss with them whether they would support our request for shared care. The gastro team is very supportive of our request and advises that they usually recommend that a general paediatrician is the point of contact locally to avoid any unnecessary conflicts concerning M’s treatment. However, given our local’s apparent reluctance, GOSH agree they will discuss M’s care with anyone in the local hospital.

April-2014: We finally receive a reply from the Chief Exec, offering his apologies for our poor experience as well as giving me their findings about the complaint. He also offers a meeting with both the gastro consultant and a member of the Senior management team at the hospital to see how we can take M’s care forward. There is some confusion as to who will schedule this appointment, but a series of phone-calls on my part and a very helpful admin assistant at their end means that the appointment is finally organised for June.

May-2014: I receive a follow-up email from our MP asking how things are going and reminding me to keep him informed of any changes in our situation. I’m delighted to be able to inform him that we’ll be meeting our local hospital at the beginning of June and agree to let him know how that meeting goes.

June-2014: The day finally arrives and Mike and I head off to our local hospital to meet with members of staff to discuss M’s needs, having left a poorly M with Mum for the duration. Our aim is to get our local to agree to having “shared care” with GOSH, so that we don’t have a repeat episode of our Christmas hell with a M who desperately needed admitting for treatment and nowhere that would take him. The consultant we meet is delightful and we’re thrilled to learn he worked at GOSH for a number of years and, even better, has worked alongside M’s consultant there. He instantly agrees to look after M on a secondary care basis, dealing with our existing issues with recurring constipation/impaction and any emergency situations which may arise. The management team has no choice but to go along with his suggestions and we agree on a system that should work well for us all and will ensure that M gets the very best care at all times. The meeting ends with a follow-up appointment with the consultant 5 days later to deal with the current bout of impaction that M is suffering.

It has not been an easy road to follow and the number of letters, emails, phone-calls and late night discussions that have been flying around is huge – BUT we did it. We’ve got secondary care for M at a local level and a positive way forward for the next few years, which is everything we wanted and which I hadn’t dared to believe was possible. Of course, we still need to see how it all works outs in practice, but the first signs seem positive and we know we’ve got at least one consultant on our, and M’s side.

	M	Me	Mike
Breakfast	Bowl of free-from rice pops Maple syrup Rice milk Toast (1/2) Peanut butter	Rice flour toast (2 slices) Peanut butter	Rice flour toast (2 slices) Rice milk
Lunch	Bruschetta made with: 4 slices rice flour toast Tuna, corn, cucumber & egg free mayonnaise Mackarel Apple (1/2) Pear (1/2)	Bruschetta made with: 2 slices rice flour toast Tuna, corn, cucumber & egg free mayonnaise Mackarel Pear (1/2)	Bruschetta made with: 2 slices rice flour toast Tuna, corn, cucumber & egg free mayonnaise Mackarel Apple (1/2) Pear (1/2)
Dinner	Baked sweet potato M&S Venison sausages (2.5) Olives Pistachio nuts Carrot cake cupcake	Sainsburys Free-from sausages (1.5) Sweet potato Salad – lettuce, cucumber, tomato, avocado	Baked sweet potato M&S Venison sausages (3.5) Green salad Banana Nectarine
Snacks	Nakd cocoa orange date bar Fruit buttons (lemon)

	M	Me	Mike
Breakfast	Smoothie (1/2 banana, 5 strawberries, 200mls rice milk)	Orange	Bowl of: Free-from cornflakes Rice milk
Lunch	Sakata rice crackers (4) Free-from spread Fruit string	Sakata rice crackers (6) Cucumber Celery Peanut butter Sliced pear	Left-over chicken casserole and rice
Dinner	4x sweet potato wedges Pork belly slice (1/2) Cucumber Apple (1/3)	Sweet potato wedges Pork belly slices (2) Courgettes Mushrooms	Sweet potato wedges Pork belly slices (2) Courgettes Mushrooms
Snacks	Fruit buttons (blackcurrant) Capri sun orange drink Brazil & Sultana bar (1/2) Rice bread (1 slice)

7 years to diagnosis

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