Tag Archives: Awareness

#NEAW2018: D is for Donate

May 21: D is for Donate

There’s nothing I hate more than spotting a charity canvasser on the street and I’ll happily confess that I instantly become one of those individuals who speed up and drop my eyes down to avoid drawing too much attention to myself if I can help it. It’s not that I’m not prepared to donate to charity – oh how ironic this post would be if I was – but I am definitely not a fan of being pressured to sign up to an ongoing commitment to any one charity whilst out and about doing other things. Part of my problem is that I hate to say no to people and always end up feeling very disingenuous as well as guilty when I come up with a reason why I don’t want to set up a regular donation on the spot.

A cash donation can help, of course it can, but these days I don’t really know what charity to suggest when it comes specifically to making a financial contribution to support those diagnosed with EGID. There are no charities in the UK currently working on research into gastro conditions and few investing time and energy into supporting families living with the consequences of this challenging diagnosis. As long as gastrointestinal disease remains the “poor” cousin to so many other life-impacting conditions, there is little chance of much progress when it comes to finding ways to improve the day-to-day life of those living with it.

However, donation is about much more than just the money. Your time, your care and your support can make an incredible difference to a family living with chronic illness and the impact should never be underestimated. When someone takes 5 minutes to ask how M is doing, and, even more importantly, asking how G and the rest of the family are too, that effort is priceless. At the moment, we seem to be a state of status quo with M’s health which is fantastic, but there is also a sense of overwhelming ennui when it comes to our ongoing relationship with our local hospital and M’s gastro consultant. Taking the time to talk to me about life apart from M’s EGID makes a big difference and should never be seen as inconsequential. We teach M constantly that there is so much more to life than his illness and it’s important that we hold on to that truth and don’t get bogged down in the mundane.

There are, of course, a million and one charities who need financial support and it’s a challenge to choose the cause that’s not only closest to our hearts, but needs that money the most. This year we’re not actively fundraising as part of NEAW, mostly because I only changed jobs a month ago and haven’t found the time to be more organised, but thanks to M’s bold cheek, we have a small fundraiser planned for the end of June. Last year, he asked the founder of their Saturday dance school if this year’s end of year concert could be a fundraiser for the amazing Over The Wall charity and he and G are now working hard on their presentation to introduce the evening. M is thrilled to be attending an OTW Health Challenges camp again this summer and we continue to be extremely grateful for the care, support and opportunities they have given both children. Both OTW and my new role with our local air ambulance have shown me so clearly that whilst the money is important and enables both charities to continue doing their fantastic work, volunteering with them has equal value. At work our volunteers are an integral part of our workforce and the truth is, quite simply, that their daily contribution to the running of the charity cannot and should not ever be underestimated.

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#NEAW2018: E is for Educate

May 20: E is for Educate

When M was finally diagnosed with EGID 5 years ago, it came at the end of a long, relentless and frustrating battle with the medical profession to have our concerns heard and acknowledged; and not simply be dismissed as over-protective parents; or worse. By the time the diagnosis was actually formalised, I had done a lot of my own reading around the subject and already knew as much about the condition as was readily available online. In the 5 years since that hospital appointment, we have found ourselves continually having to educate those around us, including the medics, who know little to nothing about what is becoming an increasingly controversial diagnosis, especially when it affects the lower GI tract as M’s does.

EoE, or Eosinophilic Oesophagitis, is becoming more widely recognised and the diagnostic criteria for this condition are well established, not least thanks to the continued research of Dr Marc Rothenberg and his team at Cincinnati Children’s Hospital. When it comes to the rest of the GI tract however, there opinion is very much divided. There are no clear guidelines as to how any of the other Eosinophilic disorders should be identified and diagnosed; and as the recent documentary about GOSH revealed, there is definitely no consensus on how they are best treated. One of the biggest problems facing children like M is the minimal investment into the research of gastrointestinal disorders and the fact that there is absolutely none into paediatric gastro research. With the credibility of EGID as a “real” chronic illness under debate, consultants all too often veer away from it as a possibility and either move towards a more psychological diagnosis or simply shrug their shoulders and leave these individuals to cope on their own, with little or no regular input.

Whether you want to lay the blame of M’s health issues at the feet of eosinophils, or mast cells, or indeed any other type of white blood cell that could be causing his body to attack itself and react to more foods that you can even begin to imagine, I don’t really mind. I’m not one to hang my hat on labels particularly, especially when that label has no meaning for the greater proportion of the people that M comes into contact with on a day-to-day basis; but I also know that being able to put a name to a problem lends a sense of genuineness to his symptoms as well. As a family we’re not able to walk away from the reality of living with this condition day in and day out because every week we experience the effect of it. I’ve said it before, I’ll say it now and I will no doubt say it many times in the future:

The symptoms that M suffers are very real and can be hugely distressing at times.

M is absolutely your average 12 year-old. He has attitude, he knows it all and he could argue that black is white with the best of them. He loves computer games, fantasy stories and endlessly watching Star Wars or Marvel films. He runs around and is noisy and can drive even a saint up the wall at times. He doesn’t look ill and I’d defy anyone who doesn’t know him to pick him out as the “sick kid” in the line-up. But that’s the face he presents to the outside world and reflects the attitude to his health that Mike and I have worked hard to engender within him.

What you don’t see is the worn out child who can’t move from his bed at times because of the pain and lethargy that accompany a flare-up. You don’t hear the quiet heart-to-hearts late at night, when he’s struggling with yet another reaction and doesn’t understand why it’s happening to him again. You don’t feel the despair that hits hard after another food causes soul-destroying disappointment because it’s clear that he just won’t be able to eat it without problem. And you can’t imagine the heartbreak of seeing the quiet acceptance that he won’t be able to go to a friend’s sleepover or away on school camp because of the possibility of suffering an embarrassing symptom that none of his friends really understand.

That is the truth of life with EGID and that’s the reason we will always endeavour to educate those who come into contact with M as well as the rest of the world in whatever way we can.

#NEAW2018: This is where it begins!

Over the last few years since we received M’s diagnosis of an Eosinophilic Gastro-Intestinal Disorder (EGID), I’ve approached National Eosinophil Awareness Week (NEAW) in a myriad of different ways. As NEAW 2018 has been approaching, I’ve been racking my brain trying to decide on the best way to talk about EGID for another year. I started posting my daily insights via my social media channels at the beginning of May, trying to highlight each day a different aspect of life with EGID along with a photo or image that captures the sentiment as best I can; we will almost inevitably spend the week “eating like M” again, though Mike might find that more of a challenge than me as he will be away on business for at least a small part of this week; and I will be attempting to post daily blogs during the week itself, sharing just a little of what our journey with EGID is really like.

In the past I’ve tried to come up with different ways to present my week’s worth of daily blogs, but with having just changed jobs and a busy few months at home, this year I decided to fall back on the format I chose 3 years ago and follow the NEAW theme itself, using the word E-D-U-C-A-T-E as illustrated above to inspire my posts each day.

And, as always, all that I ask is that you bear with me for the week ahead and read as many of the posts as you can. If you can also share them on to help spread the word about EGID, then you’ll be supporting families like ours and those of so many we know to raise awareness as much as we possibly can. The message is get out is that we’re working together, across the world, to make a difference and hopefully working towards finding a cure.

Eating Out with Allergies in…Glasgow

Whilst I wouldn’t recommend spending an hour or so wandering the streets of Glasgow looking for somewhere to buy the right kind of cereal with a stroppy 12 year-old and his big sister in tow, I have to be grateful that we stumbled a great little cafe which provided us with the allergy-friendly packed lunch we hadn’t actually realised we were looking for.

iCafe, Sauchiehall Street – As we trudged our way down the street, Mike spotted this unassuming cafe and suggested we stopped to take a look at the menu before we went on too much further. Our eagle-eyes spotted both the gluten-free bread option to accompany the soup and the vegan offerings, so it didn’t seem like too big a leap to hope that they might be willing to make us some gluten- and dairy-free sandwiches to take with us for our lunch later that day. We made a quick decision to allow M to have a “treat” and agreed that he could have a chicken and bacon gluten-free sandwich (no spread) as his lunch choice. He has long been hankering for some bread and we all agreed that this was a fantastic opportunity for him to do so. I was also impressed by the selection of allergy-friendly snacks they had on display and G was also thrilled to have a soya-milk hot chocolate to take away with her and enjoy as we headed towards the bus stop. These toasted sandwiches went down a storm whilst we were at the Riverside museum and I was delighted by this unexpected find.

Hard Rock Cafe Glasgow – This isn’t the first time we’ve successfully eaten at a Hard Rock Cafe, having tested the allergy-friendly mettle of those in both Lisbon and Athens over the last couple of years. I think that now is an opportune moment to confess that I am something of a die-hard Hard Rock fan and love nothing more than visiting the Hard Rock Cafes of the world, picking up a City Tee in each location to add to my collection. G and M have become mini fans too and every time we travel anywhere, once of M’s first questions is whether there’s a HRC for us to go to whilst we’re there. It was therefore inevitable that our dinner would be at the Glaswegian Hard Rock Cafe and G decided to try something a little bit different by ordering the GF pulled pork sandwich with chips for her main course. M agreed to compromise on what he really wanted and played it safer as he had already had the GF bread earlier in the day, finally opting for a plain GF burger accompanied by a chicken breast, bacon and cucumber sticks.

Despite the initial run-in we had with our waitress, who wasn’t prepared to accept my first answer that it was easier to tell her what M could eat, rather than list his allergies in full, we eventually convinced her to work with us and with the restaurant manager to place our order. Once they had grasped what we were trying to explain when it came to feeding M, things turned round quite quickly and I absolutely cannot criticise the care that was taken with the children’s meals for the rest of our dinner. Once again we enjoyed a superb meal at yet another restaurant from my all-time favourite chain and wouldn’t hesitate to recommend a visit there to anyone with allergies.

From Gormley to Glasgow via Gretna

With our brief stint in Liverpool having come to an end, we set off to more Northern climes, planning to cross the border at where else but the infamous Gretna. Before setting off from our Liverpool base, we nipped into the local M&S to pick up a selection from their incredible GF/DF range as well as some other bits and pieces for us to enjoy as a packed lunch whilst we were en route. There was just one more place for us to visit before our journey could properly begin as I insisted on a detour to Crosby Beach, home to Antony Gormleys incredible art installation, Another Place. Mike and I had visited it during our previous trip, on a grey, wet and fairly miserable December afternoon and the weather wasn’t really all that difference on our second visit this March. The children found the statues themselves quite disconcerting and M wasn’t keen to get too up close and personal with any of them after he’d examined the first one. Whilst Mike and G wandered towards the shoreline to see the furthest one that was still accessible on foot, M and I instead stood back on the boardwalk to see how many we could spot out in the depths of the River Mersey. It is an impressive sight and was a detour I was glad we had taken.

 

Unfortunately, the delays from both the shopping trip and our visit to the beach plus a late morning start meant that we hit traffic as we joined the M6 Northbound and we quickly found ourselves in the hell of bank holiday traffic and lengthy queues. Thankfully M slept his way through the worst of them and by the time he woke up, we had headed off-piste and were relying on my map-reading skills and the GPS on Mike’s phone to find short-cuts along A roads and through small towns to try to circumvent the M6 nightmare. We eventually found ourselves heading towards the Scottish border with a fast-approaching teatime and decided to stop in Gretna to have some food before continuing our journey to the next planned stop on our travels, Glasgow.

 

We spotted the ever allergy-friendly Pizza Express at the Gretna outlet village and instantly decided it was the easiest place to stop as we know they can cater well for both children. The one thing that made me chuckle when choosing my dinner was spotting the Irn-bru – often described as Scotland’s second national drink – available on the drinks menu. As I said to Mike, “You know you’re in Scotland when…!” After an enjoyable and much-needed meal, during which I had explained the historical relevance of Gretna Green for young English couples looking to elope, we set off once again to complete the 90 miles or so remaining to reach our final destination. We arrived at our hotel on the banks of the River Clyde in the dark and were just about able to make our weary way to our room before bedding down for the night. It seems that endless queues of traffic can really take it out of you!

A Brewing Storm

Yesterday a social media storm hit the EGID world, especially for those of us who are, or who have been, under the care of Great Ormond Street Hospital over the last few years. The reason? A story published by The Guardian newspaper on Saturday night, which has raised questions about the treatment of patients of GOSH’s gastro department following a huge number of complaints from parents and successive reviews of care carried out by the RCPCH (Royal College of Paediatrics and Child Health) since 2015.

As a parent to a child with an EGID diagnosis and one that was given by GOSH at that, this story is heart-breaking and yet one that I know needs to be told. Whilst M has never been subject to the “aggressive treatment” described in the reports published by The Bureau of Investigative Journalism (see here and here), we have struggled with our own issues rising from some of our experiences during inpatient admissions at GOSH and I have always been open and honest in sharing these via my blog. We have made complaints, challenged M’s consultants and spent time talking to the Chief Exec to try and make sense of it all and improve the way that, not just M, but other children have been treated whilst they’re there.

Last summer I shared my fears about the huge question marks that have been hovering over the EGID diagnosis for a while and how they could impact on the treatment and care that M receives from the medics in our lives. This week my fears grow even greater as the TBIJ documentary investigating these allegations about GOSH will be aired on ITV1 at 10.40pm this Wednesday, April 18th. Whilst I know that the documentary is seeking to reveal the truth behind some of the treatment decisions made for certain families, there will undoubtedly be concerns raised about the veracity of the diagnosis of EGID itself and with that comes inevitable questions about whether any of those diagnosed with EGID are genuinely living with it, or not. Comfortable viewing it may not be, but I will be watching it – and probably keeping my eye on the resulting social media frenzy too.

At the end of the day, I’m not really that bothered about what the label itself actually is for M – EGID, MCAS, food allergies or something else – as all I want is a better life for him and the others who find themselves in the same boat. As I said last year,

“For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.”

*You can read a more in-depth, first-hand commentary about this GOSH story here

Taking Over once again

In November 2016, G and M were lucky enough to be invited to participate in the first ever Takeover Challenge at GOSH. They spent the day running the Development and Property services department at the hospital and even managed to somehow convince the staff to take them onto the building site of the new research centre being built opposite nearby Coram Fields. One of the jobs they had undertaken during that Takeover Day was to help design the hoarding to surround the building site and we were delighted to see it in place when we visited GOSH for the Big Youth Forum Meet-Up in mid-October as both children got to see their hard work actually being used in real life.

 

So it will come as no great surprise that the minute they heard that there would be another opportunity to Takeover at GOSH this year, both G and M leapt at the chance. Unlike last year, when they opted to be part of the same department, this year they determined to do different things and each took on very different roles with G joining the ICT department as an ICT project manager, whilst M became a clinical scientist for the day. We were fortunate that their secondary school recognised the value in them attending this day and were happy to authorise their day off, something that M in particular was delighted about. I was already in London for the week attending the Foodmatters Live conference and so Mike set off from home extremely early on the Wednesday morning to get the children to the GOSH reception area in time for their respective days to start.

We had arranged that I would meet up with them for tea and over an early supper at Wagamama in Leicester Square, I was regaled with excited tales about the adventures of their day. G’s day was spent learning about how the ICT department is involved in the day-to-day running of GOSH and more specifically understanding how the staff ICT helpdesk is run and looking at solutions to common IT problems. G had an opportunity to visit different hospital departments and help resolve the problems some staff members were experiencing and even managed to successfully close a couple of cases herself. Her final task of the day was to visit the brand new clinical building that has recently opened at GOSH and understand how the decisions around what ICT equipment to provide for patients are made. One of her mentors for the day also took her to visit one of the laboratories in the hospital knowing that M was based there, although she didn’t spot him during her visit.

M’s day was focused on understanding the role of the clinical science team at GOSH and in particular learning more about gene and cell therapies as well as the research that is undertaken in the hospital. He was keen to take on this role because of the rare status of his own condition, EGID, as it demonstrated just how important this type of research is. M spent the day  learning how to split blood samples into different cell types, preparing the cells for analysis, generating DNA fingerprints and analysing DNA for mutations. The team also showed him what eosinophils look like when they’re put under the microscope and gave him an insight to what his scopes might have looked like prior to his diagnosis. As usual, M learned a lot from his day and when he and I attended our local hospital a week later for a set of bloods to be taken, he was keen to explain to the nurses there just what would happen next with the samples they were taking from his arm.

Both G and M had an amazing day at GOSH and we are, as ever, extremely grateful to the YPF and youth liaison team who not only offered them this fantastic opportunity, but also made sure the day was a huge success for them both. I know M already has his sights set on Taking Over yet another department next year, but we will just have to wait and see what happens!

A Winter-themed weekend

For the 4th year in a row, I found myself not only in London, but also spending a little time at GOSH during the weekend closest to G’s birthday. Thank goodness that this year there was no admission attached to what is fast-becoming a December tradition, instead, just like last year, our reason for going was the December meeting of the GOSH YPF and with both G and M now active members of the YPF, we decided to make a weekend of it and round off the birthday celebrations in style, whilst gently kicking off our Christmas ones as well.

In the lead up to a previous YPF weekend, I was lucky enough to stumble across the Travelodge in Hounslow, which has quickly established itself as our destination of choice whenever we need to head to London for the weekend. A lot more affordable than central London prices, it is a short walk away from a secure car park and both the East Hounslow and Hounslow Central tube stations, making it an easy commute into GOSH in particular as all are stops on the Piccadilly line. This close to the end of term, we were able to take advantage of the fact that the out-of-school activities have now finished and headed to London on the Friday evening once G and M’s school day was over, and even managed a reasonable night’s sleep before our busy winter weekend began.

It started with our morning commute to GOSH, where we dropped G and M, both kitted out in their Christmas finery, for a YPF meeting filled with a whole host of activities and treats, including a hotly challenged Christmas quiz. Once the children were settled, Mike and I set off on foot towards Covent Garden and spent our day meandering the streets, exploring the shops and even managing to pick up the odd present or two as well. We stopped for a light lunch at the amazing Cafe in the Crypt at St-Martin-in-the-Fields, just off Trafalgar Square. This is fast becoming one of our favourite spots whenever we are in London as the food they serve is simple, yet delicious, they serve a few allergy-friendly snacks too and is a place I would heartily recommend to anyone looking for a peaceful break from the busyness of London itself.

Lunch done, we started our trek back to GOSH along Shaftesbury Avenue and stumbled across this group of festive, charity bike riders as we turned the corner towards our final destination. It really was a sight to behold as we were surrounded by Father Christmases as far as the eye could see and lovely to watch excited small children wave and shout out Christmas greetings as the cyclists sped past.

 

There was one last stop I wanted to make before we met G and M and that was at the Baileys Treat Stop pop shop located not far from Covent Garden. It was only open for 2 weeks and I was determined to take advantage of our trip and pay a visit there for a Baileys-inspired hot drink. The queue was long and it took over 40 minutes to finally get into the shop itself, though our patience was well-rewarded by the plethora of treats that was brought out to keep those waiting happy – chocolate eclairs filled with Baileys-infused cream, cups of popcorn and chocolate covered Baileys fudge and toffee. I finally made it to the front of the queue and having never tried their Pumpkin Spice version and not fancying a treat-laden hot chocolate, I decided to customise a Pumpkin Spice latte instead. I think the server was a little disappointed with my rather tame selection of “just” chopped nuts and wafer straws, but despite his best efforts, I held firm to my decision, which I maintain was absolutely the right one. However, the latte itself was incredibly disappointing and absolutely not worth the time and money I’d spent to get it. What I hoped would be a small Christmas treat for me really wasn’t and we wasted close to an hour with that detour.

However, the rest of our Saturday went according to plan and was a fantastic ending to G’s birthday celebrations. Both children had a great day at the YPF meeting and came away with some small and unexpected gifts and treats. G was really keen to have a Chinese meal for dinner and so we chose to double up M’s medicines throughout the day and then allowed him to relax his diet for the evening. Mike and I had done scouting around Chinatown during our day and we headed to the Feng Shui Inn for a few carefully selected dishes which the whole family enjoyed. From there, it was just a stone’s throw away to the Prince Edward theatre where we were treated to the delights of Agrabah, the fantastical quirks of the Genie and the addition of a handful of new songs to Disney’s Aladdin. This was G’s choice of show and I knew she’d enjoyed it when she asked at the end if we could see it again! It was an amazing production and we were incredibly lucky to see Trevor Dion Nicholas in the role of the Genie, a role he was reprising after a successful stint on Broadway.

Sunday morning saw another tube ride into London, though this time our destination was the Tower of London where we had booked an ice-skating session on the rink set up in the moat. Both children were keen to have a go at skating once again and Mike was just as excited. It took a little while for G and M to find their feet, but they were soon off and even attempting to get around on their own, away from the barrier. The session only lasted 45 minutes, but that was more than enough for all of us and M and I even left the ice a few minutes early due to the uncomfortable hire skates we were wearing. All in all, we had a fantastic and fun-filled family winter-themed weekend and it felt like a fitting end to what has been a long school term.

Big Youth Forum Meet-up

In the middle of October, a group of over 80 young people from across the country gathered at Great Ormond Street Hospital for the first ever national Young People’s Forum (YPF) meet-up. Organised by members of GOSH’s YPF, the event looked to provide an opportunity for discussion about the practical and emotional issues that impact young people when they are in hospital as well as running workshops teaching a variety of skills from basic first aid to how to run a successful national awareness campaign.

Never ones to miss a great opportunity, we checked the proposed date for the meet-up and signed both G and M up to be a part of the day as soon as we could. G has been a member of the GOSH YPF for over a year, whilst M had been counting down the days to his 11th birthday so that he could similarly join the group. He finally attended his first meeting earlier this year and was thrilled to be able to be a part of this inaugural event, especially when he revealed that they were hoping to invite a celebrity to take part in the event too. It proved to a real learning experience for them both as they were invited to take part in the planning for the day itself via conference calls, a life skill that I never imagined them learning before their careers kicked off. We sat around the kitchen table, discussing conference call etiquette, the need to keep your phone on mute until you actually wanted to speak and the importance of listening carefully to what the others involved had to say.

After weeks of careful planning, the day finally arrived and we made our way across London to GOSH bright and early on the Saturday morning, following the signs that had been chalked on the surrounding pavements to help the visiting youngsters find their way. Mike and I were excited to learn that their celebrity guest was comedian Alex Brooker, star of “The Last Leg” and himself a former GOSH patient. G and M were less impressed, neither knowing who he was and whilst M was initially quite disappointed that his own top pick, magician Dynamo, was not going to be there, he very much enjoyed the opening talk that Alex gave to the group of young people attending the Big meet-up.

From what they told us afterwards, the day just flew past and they were keen participants in every activity, including covering their arms with a selection of temporary tattoos recently designed by GOSH Arts with the help of a few members of the YPF. G decided to attend the First Aid workshop, where she learned the basics of CPR as well as how to deal with anaphylaxis and administer epi-pens. She was particularly delighted to learn this latter skill as it was something that she and M had requested be a part of the First Aid training given. M, on the other hand, opted for a workshop ran by consultant paediatric surgeon, Ross Fisher teaching practical presentation skills, which he has subsequently put to great use at school. All in all, G and M had a fantastic day and are already looking forward to next’s year national meet-up, which is being hosted jointly by the Nottingham and Derby YPFs.

World Prematurity Day 2017

Another year passed and another chance to mark World Prematurity Day. It’s hard to believe that my preemies have gone from this…

to this….

Determined to win their fight every single day!