Tag Archives: Great Ormond Street Hospital

Looking ahead

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The start of a New Year is always an opportunity to reflect on the things that have passed, but more importantly, to look ahead to the adventures that are yet to come. We had a 2016 filled with as many highs and lows as we’ve faced in previous years and I don’t doubt that 2017 will be equally challenging in ways that are both startlingly similar and scarily new. I’m looking forward to a year that will investigate new possibilities for M’s diet and seek potential answers for what’s going on in his body as well as watching as G tries out new opportunities and starts thinking ahead to the school subjects she wants to study for GCSEs – a conversation that has filled our end-of-holidays walk this afternoon. We don’t know exactly what this year will bring, but it’s always good to look back on everything that has brought us to this place:

Giving something back

23567358210_2327dd548d_mAs we counted down the days to Christmas within the confines of GOSH last year, one of the seasonal highlights for both M and me was the carol-singers that we encountered during our stay. Hearing the gentle strains of familiar carols outside the main entrance, within the beautiful chapel and along the hospital corridors helped us feel a part of the excitement building in the outside world, even though M was ward-bound for so much of the time. I was fortunate enough to be able to go to the Carols by Candlelight service at St. George’s Holborn, a church just across the road from the hospital itself 23104290053_5ffd34741a_zand M, Mike and I had great fun another evening joining the choir from All Souls Church, Langham Place as they sang their way around GOSH, serenading patients with their cheerful Christmas singing.

Knowing how much those experiences lifted our spirits during a difficult and emotional time away from home, I leapt at an opportunity this year to give a little back. One of the choirs I sing with was invited to spend an afternoon singing carols and Christmas songs at a regional Children’s Hospice, whilst one of the local football teams delivered presents and spent time talking to current patients and their families. It had been an occasion that I’d been hoping to take part in last year, so as soon as I heard we were invited back this year, I knew that I just had to be a part of it if at all possible.

img_13021Yesterday was that day and what a truly magical experience it was. A small group of just 9 of us gathered and spent the afternoon singing carols and Christmas songs to the children and their families, who are so dependent on this Hospice to provide some precious moments of respite during the year. I took the opportunity during our visit to speak to staff members, parents and even some of the children themselves and gleaned just a small insight into how important this Hospice is to them all. There were no tears yesterday; just a celebration of the individuals gathered in those rooms and an opportunity to make memories that will last a lifetime. When favourite songs were requested, we gladly sang them to bring a little extra cheer to what was already an amazing party. I gently persuaded – ok, 15578155_10154311119488790_2228089488536286007_operhaps, more honestly, I coerced with a cheerful smile and a little Christmas spirit – some of the footballers to join us for a rousing rendition of “The Twelve Days of Christmas”, which ended with friends, family and staff also singing along and sharing in the joy of that moment.

We received thanks for our attendance again this year, but the truth is that we received from the experience far more than we gave. It was a huge honour to be able to be even a small part of a fantastic event and, for me, a real opportunity to give something back to families that are living through a reality that reminded me just how lucky our family truly is. Not everybody can sing; not everybody will be able to offer practical help, but if you can find a way to #givesomethingback this Christmas season and beyond, please do.

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Breaking the curse

Reaching today feels like something of a landmark moment. We’ve had our fingers crossed that we’d get to yesterday’s date without so much as a hiccup to stand in our way and we’ve not only reached it unscathed, but have surpassed it with no sign of looking back. Saturday was December 3rd and we were all feeling more than a little nervous about it. The date might not ring any bells with you, but in our household, hitting midnight on the 3rd at home felt like a huge achievement. For the last two years, that date has signalled the start of a hospital admission for M and we were desperate that history wouldn’t repeat itself for the 3rd year in a row. Of course, in both 2014 and 2015 we knew that the admissions were planned and it was just a case of waiting for a bed to be available for him, but nothing prepared us for the unlikely scene of déjà vu when the phone-call came summoning us to London once again, exactly one year to the day of the previous one.

There was no reason to think it would happen again, not least because there are no further admissions planned at GOSH and we had already told our local hospital that we wouldn’t even consider a December admission this year, but the fears of our “December 3rd curse” were there anyway. I’d like to say that the weekend passed without event, which is really what we would have preferred, but as ever in the 7Y2D household that isn’t quite the case. There have been unplanned hospital visits and unexpected procedures discussed for family members other than M over the last week, and the implications of those are still being mulled over as decisions have to be made and soon. However, most importantly, today is December 5th; M and G are at school, Mike and I are at work and that’s just the way it should be.

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Now we can start to enjoy Christmas!

Takeover Challenge 2016

img_12651When it comes to thinking they know it all and can do it all better than the adults in their life, my kids are world champions. The frequency with which Mike is told that “Daddy, you just don’t understand..” is high and he often finds himself trying to defend his position to an irate 10 year-old, even on matters where he quite obviously has far more expertise than anyone else in the room – think anything building-related given his career as a chartered surveyor. There is a certain level of deference awarded to me, after all I’ve proved over and over again that Mummy knows everything there is to know and, besides which, she really isn’t someone you want to get on the wrong side of ever; but the opinion of just about every other adult is scrutinised carefully and often rejected on the basis that they just don’t understand either. M has some very strong opinions and would, and sometimes has, happily argued the case that the sky is green for hours, often with a reluctant truce having to be declared before World War III breaks out across the dinner table. As for G, well she has perfected the teenage eye-roll ahead of hitting her 13th birthday and it’s often accompanied by a surly shrug of her shoulders and a mumbled “Whatever” as she heads upstairs to the seclusion of her bedroom.

redevelopment-wed-2So, you can imagine my thoughts when G and M were invited to be a part of this year’s Takeover Challenge at Great Ormond Street Hospital through G’s involvement with the GOSH YPF. This is a fantastic project run during November by the Children’s Commissioner and sees organisations and businesses across the UK opening their doors and inviting children and young people to take over adult roles. The Challenge seeks to “…put children and young people in decision-making positions and encourages organisations and businesses to hear their views. Children gain an insight into the adult world and organisations benefit from a fresh perspective about their work.” Excitement has been building in our household for weeks as G and M looked forward to finding out more about how the hospital is run and last Wednesday couldn’t come soon enough for my two excited children. I was delighted for them to have this experience, but my true sympathies lay with those adults who would be brave enough to let this opinionated duo step into their shoes, even for a day.

The children were invited to take-over the Developmimg_12641ent and Property Services department as Director and Deputy Director for the day. The information they received in advance told them that they would have a “behind the scenes” tour of the hospital with opportunities to learn about the systems that help the hospital to run efficiently, including visiting the plant room with engineers, learning about the food ordering system and how the meals get to the children on ward and understanding more about how the hospital plans and designs spaces to be fun and interesting for the patients, their families and the staff. Ahead of the day itself, both G and M were asked to complete a profile to be shared with the Development team, explaining a little about why they were interested in this role as well as what their involvement with GOSH is. G had 2 key areas of interest – finding out how the kitchens cater for patients with food allergies and how new spaces and redevelopment work is done – whilst M was eager to see the plant and machinery that makes the hospital run and find out more about the technology in place.

img_12601Determined to dress for the occasion, M’s clothes were chosen the weekend before to make sure that everything he needed was washed and ironed, unlike his sister, who typically left everything to the last-minute and was then put out when her first couple of outfits were deemed unsuitable by me. Taking the challenge very seriously indeed, M solemnly told me that I needed to make sure he was in bed early on the Monday and Tuesday so that he could be well-rested and ready for a busy day. Our decision to head to London on the Tuesday night after a Year 6 meeting at his school slightly scuppered those plans and his night’s rest was then further disrupted by a 5am fire alarm in the hotel, something none of us appreciated. The further stress of the drive across London to make sure that we reached GOSH in time whilst being questioned constantly as to when we would arrive, tested my nerves thoroughly, though we did make it – by the skin of our teeth. The hurried unloading of G, M and me just around the corner so that we could dash to the main entrance by 10am as Mike went off to the park the car, was an unexpected drama I could really have done without.

However, the day itself was a huge success redevelopment-wed-14and we are still hearing snippets about it a week on. Whilst both children took over the same department, their mornings were filled with different activities to meet the interests they had already expressed in their completed profiles. M spent the morning with Development Director, Matthew Tulley, the highlights being exploring the roof of the hospital and learning more about CAD. That second activity earned the accolade that “CAD is rad!”, something I suspect will stick with the Development team for a long time. G headed in a different direction to learn more about different aspects of what this department does. She went with Deputy Director Stephanie Williamson and spent the morning planning and designing a new orthopaedic therapy space, which she really enjoyed, though it proved to be a challenge to fit all the requirements into the space available. She then headed to the kitchen to find out a little more about how patient meals are prepared, before meeting up with M and Matthew for their lunch. A big thank you has to be given at this point to Stephanie and the rest of the catering team who did a sterling job at providing safe meals for both children to enjoy. Both had been able to choose their menus before the day itself and the team had taken on board M’s request for either rice pudding or a rice krispy cake for pudding, which he was delighted to see.

After lunch, they both went to the Special Diets kitchen, where I’ve been told they met the 4 Simons who work there and M wondered if that was a prerequisite of working in the kitchens. I understand that the team was delighted to finally put a face to a name and actually meet a patient that they have had to cater for in the past. 15069048_10153959799661921_8246658330976253376_oThere was then enough time to head off to Coram Fields and chair a meeting about the new research centre being built and discuss the hoarding that will be used to surround the site. They even managed to find their way on to the building site, where M’s enthusiasm in particular has earned him the offer of a return visit to see the completed building in a couple of years’ time.

After our own day spent walking round London together, Mike and I met them back at the main reception where they were both clasping bits and pieces they had accumulated during their day in the job. It had been a fun day spent learning more about the hospital we have spent so much time in over the last few years and they thoroughly enjoyed every moment of their experience. We had a peaceful homeward journey after M’s gastro appointment, with M taking a nap as we headed out to Westfield for dinner and then both falling asleep as we travelled back home.

I can’t thank Steph, Matt and the rest of the Development and Property Services department enough for the time they took to spend with G and M and show them what goes into making a busy children’s hospital run. They both had an amazing day and are already talking about what department they might be able to take-over next year if they have the opportunity again.
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My name is…

14141873_10153684384151123_244385722473814537_nI have a confession to make. In the grand scheme of things, it’s no biggie and it certainly won’t come as any great surprise to my nearest and dearest, but I have to admit that…

my name is bluesingingdragon and I am something of a coffee shop addict.

Admittedly, I’m not yet at the stage of needing a daily fix of my favourite flavoured drink, but when the opportunity arises to partake, let’s face it, I’m not likely to say no. Days out often involve a quick game of “hunt the coffee shop for Mummy” whenever possible and travel breaks are carefully timed to match our approach to a service station housing either a Costa or Starbucks, depending on my current preference. Is it wrong to love that my kids know to order me a “decaf vanilla latte”? I don’t think so, especially when it has saved my drink on the odd occasion that Mike has forgotten one crucial element or another from my order.

img_12061My coffee shop of choice does change on a fairly regular basis, depending on the time of year and the flavoured drinks on offer. For the last couple of years, Starbucks has held the monopoly on my business from the end of September until Christmas, thanks to their Pumpkin Spice Lattes and Black Forest Hot Chocolates, which have unfailingly kept me going during M’s GOSH admissions. As for the rest of the year, well if I’m perfectly honest I’m fairly ambivalent to where my decaf comes from most of the time, but whenever G and I are having some much-needed girls time, Costa always wins hands down. Our recent trip to London for the last YPF meeting proved to be the perfect opportunity to try out a few of the free-from foods that Costa has to offer and we weren’t disappointed.

img_12511G always chooses a small soya hot chocolate* with marshmallows and loves nothing more than accompanying it with a gluten- and dairy-free cake. However, this time we were travelling late afternoon by train and I wanted to pick her up a light tea for the journey home. As well as the obligatory drink and cake, G also chose a gluten-free roll and packet of crisps to complete her meal. I was interested to find out just how much she enjoyed her sandwich and whether she’d be happy to eat it again. To be honest, G was a little uncertain about the sandwich as she’d picked a chicken salad roll and she wasn’t impressed that there was tomato in it too, img_12081but once I’d removed the offending item, she was happy to give it a go and ate the lot, telling me that it was surprisingly filling. The crisps rapidly disappeared as did the mini pecan pies that rounded off her supper beautifully.  All in all, G gave her meal 8/10, a decent score given the disappointing inclusion of tomatoes in her sandwich.

Much as I was delighted to be able to buy a complete light meal that was safe for G to enjoy, I was disappointed by the limited choice, which seemed to ignore what can be the simpler tastes of children. I know that G would have been much happier to have a plain ham roll, but the only sandwich available was the chicken salad roll and that had been challenging to find as it was hidden amongst the other sandwiches, wraps and paninis available in the fridge, something I’ve found to be true in every Costa I’ve visited in the last few months. Likewise, as fantastically delicious as the pecan pies are, they are the only safe cake available as the gluten-free chocolate brownie contains milk and their fruity flapjack contains oats. They did previously sell gluten- and dairy-free mini bakewell tarts, which were another huge hit with G, but those were discontinued and replaced by the pecan pies, something that G still grumbles about these days. I love that a mainstream, high street coffee shop is trying to cater for those with food allergies, but I think there’s still some work to be done to make this a really great elevenses or lunch-time option.

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*Costa states that milk is present in the manufacturing site/factory/supply chain of their soya hot chocolate and that there is a significant risk that this allergen could cross-contaminate the food. Do not choose this if you have a severe dairy-allergy.

From all angles

The last few months have been busy ones in all areas of our life, which I haven’t been shy in talking about, but the one aspect that I haven’t mentioned for quite some time is where we are health-wise with M’s EGID. You could view the reason for the radio silence as a good one – we haven’t really been making any significant progress and everyday continues to be a battle to see if we can reach and maintain some semblance of status quo for a decent length of time. I’ll be honest, since March things have been quite challenging as we have had little medical support and we have felt, at times, as if we’ve been cut loose and are paddling desperately to make some headway by ourselves. The reason for the missing input is that we are in the process of trying to build a shared care relationship between GOSH and our local hospital once again and at long last do appear to be making bmd6e7zcyaef7disome progress, albeit very slowly. We last saw M’s GOSH consultant in the middle of March, when it was somewhat reluctantly agreed by us that we would wait until November for his next GOSH appointment with the plan being that we would meet and then have an appointment with our local gastro team during the interim period.

It may well come as something of a surprise that we are even considering transferring some of M’s gastro care back to our local given the  numerous problems we’ve had in the past, but this time we were encouraged by the fact that his new gastro consultant is a registrar that we got to know whilst at GOSH and someone we trust implicitly when it comes to M and his health. Dr W, who has invited us and M to be on a first-name basis with him, was instrumental in getting M admitted 2 years ago when we made the decision to move to elemental feeding and so is someone who knows something of M’s background and understands where we, as his parents, stand when it comes to treating this disease. We are also keen to gain some local support for M because, when crisis hits, it is very difficult to get any immediate care from GOSH due to the distance we live from the hospital and the inability to just pop along there for them to review his current state of health. There is a standing agreement that we can phone and discuss him with any one of his consultant’s team, but sometimes that isn’t enough to resolve the issue as quickly as we all need. supportDr W had already agreed with GOSH that he was happy to meet with us and look at the potential possibility of taking over some of M’s care during last year’s disastrous admission and he understands that there is a trust issue between us and our local hospital that he and his team will need to work hard to re-establish – something that is so critical to M’s well-being.

With a little prodding, it didn’t take too long for Dr W to give me a call and then for an initial appointment to arrive on our doormat and Mike, M and I met with them in the middle of June. At this point, M’s broken leg had unleashed an unexpected level of havoc on his body and we were struggling to manage the ever-fluctuating bowel issues as well as his increasing reluctance to drink the E028 and huge disappointment that we couldn’t undertake any food trials whilst he was so unstable. The team was great, but it really was just a conversation about what we were looking for and what they felt they could do for us. A few interesting insights and suggestions about M’s diagnosis were thrown out, but there was no opportunity to ask questions about them and now, 3 months on, our reflections have left us wondering about what the next steps will be. What didn’t come as a surprise was the question mark over whether M is truly suffering from so many genuine food allergies or rather if there is an underlying problem with his gut and/or bowels which means that he is unable to tolerate so many foods at the moment. This has been a question that has been stumping his GOSH dietician too, who has freely admitted to finding M one of her most challenging patients ever and is hoping our local will provide a fresh pair of eyes when it comes to considering how best to treat him. Dr W also expressed a concern that 20150203_082342M would eventually stop drinking the E028 altogether and stressed that we need to find a viable alternative before we reach that point. This has proved to be remarkably insightful as it is now one of the biggest issues that we have had to contend with since that June appointment, with M struggling to drink even half of the required amount and with no new foods in his diet, there are growing concerns about both his weight and his nutritional intake.

Just before our Portuguese holiday, I contacted our GOSH dietician to discuss with her the lack of progress we’ve been making with M and asking for her input as to what we should do next. The email reply I had came as something of a concern as she explained she was under the impression that all care had been moved to our local hospital and she was surprised that I was looking to have a further conversation with her. I fired off a considered response, copying in both the GOSH and local consultants, advising that whilst we had met with the local gastro team in June, we had heard absolutely nothing since and really needed some medical advice once September started, although somewhat ironically we have had our next GOSH appointment booked – September 2017! Thankfully the strong relationship we have built up with this dietician since M first went to GOSH 5 years ago meant that S was happy to step in and gave me a call just a few days into September. She was as concerned as I was about the lack of medical care being given to M at the moment and during that lengthy phone conversation, worked with me to put a plan into place for food trials over the next 4-6 weeks. She also offered to chase both Dr W and our GOSH consultant to find out what was happening regarding the transfer of M’s care and try and speed up the process to ensure that M is seen before November if at all possible. I’m not quite sure what strings she pulled, but within a week of speaking to S, Mike received a phone-call from Dr W to tell him that a plan had been agreed between the two hospitals and an appointment would soon be forthcoming. Delighted to hear that a plan would soon be put in place, Mike asked whether we could be privy to the discussion they had had, so that we too were on board with whatever next steps they were expecting to make. Another lengthy conversation later and at long last, we finally had some idea of how M’s care will be handled until the end of the year at least.

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The most critical aspect of looking after M right now is that no-one really understands what is going on with his body, his bowels and gut in particular, and there doesn’t appear to be any logical explanation why we seem to be stuck at just 5 safe foods. Add to that the added complications of the massive downturn in his health that happened as a result of his broken leg and the resulting failure to find ourselves in as good a position as we were a year ago, the medics all agree that they are more than a little stumped. So, rather than rush into more tests or a radically changed approach to his treatment, our local gastro team have booked monthly appointments for the next 3 months, where they will be assessing and observing him without getting too involved in the medical decisions. Obviously any problems that we do encounter during that time will be addressed, they won’t leave M to suffer unnecessarily, but they are leaving us to work with GOSH in terms of his food challenges and medicine tweaks. They have also recognised the need for psychological support, not just for M, but for the whole family and are proposing that we start with weekly appointments, split into fortnightly appointments for M and the alternate weeks for Mike and me. We have long argued that the diagnosis of his EGID has a huge psychological and emotional impact on M and have frequently seen the outpouring of that in the home environment. The added stress of his SATs this year is already showing at both home and at school and so I am hopeful that with these regular sessions in place and the support of us and his teacher, we will ensure he makes his way through Year 6 relatively unscathed. With this kind of all-encompassing care in place and the availability of local support for any admissions or longer term treatment changes that might be needed, the strain on the family will hopefully be reduced a little too, although it will obviously never fully disappear. We don’t know what the future holds for M and that is the most daunting thing we have to face as a family. What is encouraging is that there is already an open dialogue between some of the many people involved in M’s day-to-day care and our hope is that can only prove to be the best thing for him.

Giraffe, food allergies & me

This restaurant chain has long been a favourite of ours, even before the days of M’s extreme restrictions, and was one of the very first that we ventured back to once we had successfully got 3 foods back into his diet in 2015. We’ve visited their restaurants in various locations across the UK – London, Bristol, Milton Keynes – and have unfailingly had great service and understanding about the risks surrounding food allergies. So I was disappointed recently to see a Twitter conversation where fellow allergy-sufferers had not had such a good experience and indeed where one had suffered a severe anaphylactic reaction when her request for no soy beans in her food had been ignored. tweet

Naturally, me being me, I couldn’t help but wade in with my size 8s, not just because of our previous encounters, but because of our most recent and excellent experience at the Giraffe restaurant in the Brunswick Centre. I was so impressed with the impeccable diligence taken in regards to safeguarding my children during our meal that I have been singing their praises far and wide and felt it was about time that I did the same here as well.

img_11141G, M and I had headed there for an early supper following a busy day in London. G had been at her 2nd YPF meeting at GOSH for the day, whilst M and I had walked many thousands of steps exploring the activities and displays on show to mark the 350th anniversary of the Great Fire of London. Once our day was done, we had just enough time to sit down for our dinner before heading off to catch our train home and wandered to the Brunswick Centre because of its proximity to GOSH. The Brunswick Centre hosts a number of different restaurants, most of which we have tried at one time or another over the years, but Giraffe is the one that we most commonly head back to as both children enjoy the food and it is one of the few that prepares rice for M to accompany his meal.

downloadDecisions made about what they’d like to eat, our waitress came to the table to take our order and this was when their attention to details become really apparent. I started by telling her that both children had allergies and she immediately disappeared to grab their allergen listing to run through their menu choices with me. I mentioned that M’s allergies in particular were complex and unlikely to fit the detail given in their book, but she advised me that she had to go through it because she would be asked about it as soon as the order went to the kitchen and that her neck would be on the line if she hadn’t taken that first step of checking it all out. We started with discussing what would be safe for M to eat and she was immediately able to offer brown rice, a grilled chicken breast and cucumber slices, a meal that would more than meet his needs and then we moved on to G.

G had decided she really wanted steak and chips for dinner and whilst there was no problem with preparing a safe steak, the chips were more of a problem. Our cheerful waitress said it was possible that the chips couldn’t be cooked gluten-free as it was dependent on whether the oil in the fryer had been changed since their lunch-time service or not. She immediately headed off to the kitchen to check the situation with the chef and came back to apologise that unfortunately the chips would be cross-contaminated and so we needed to pick something else. G was insistent that she didn’t want rice and I was struggling to spot an alternative as the potato wedges are also cooked in the fryer and so wouldn’t be safe. 20150408_181702However, our waitress came to the rescue and suggested that G had the crushed potatoes as, whilst the menu stated they included dairy, she could request that they be prepared with just a little oil instead. Situation saved!

It didn’t take too long for our plates of food to arrive at the table and we were delighted with the meals that were served. Despite all the hassle with getting G’s meal ordered, the steak and crushed potatoes that arrived looked delicious and she devoured the lot in fairly short order. M munched his way through his dish too and the second chicken breast that we asked for half-way through was prepared and served before he had managed to clear his plate. I really was incredibly impressed with their approach to preparing, cooking and serving allergy-friendly food and how hard they worked to ensure that we all had a meal we could enjoy and remain safe eating. I don’t know if this system is in place across the Giraffe chain, or if it is carried out as thoroughly as it was at the Brunswick Centre, but I’m certain that this is a restaurant we would happily choose to eat at again.

Giving young people a voice

ypfI mentioned a couple of months ago that G has been invited to become part of the GOSH Young People’s Forum, or YPF as it’s more readily known. When I wrote that post, she was just about to attend her first meeting and was excited to see what the YPF was all about. For those of you who perhaps can’t quite remember the finer details, it’s a group of approximately 40 young people aged between 11-25, who are all either current patients at GOSH, previous GOSH patients or siblings of patients. As well as being one of the youngest in the group, G is, I believe, unique in that she is the only member who is the sibling of an existing GOSH patient, which makes her comments valuable coming, as they do, from a completely different viewpoint.

The purpose of the YPF is to improve the services provided by GOSH to their young patients, whether inpatients or outpatients and focusing on the teenage patients in particular. It is very much a two-way process, with the hospital asking for input on important issues or developments that are happening on-site as well as the YPF members developing their own projects to improve the experiences of patients and their families. man-speaker-1Members get involved in all aspects of hospital life from inspections such as the PLACE assessment and providing valuable feedback on projects planned by hospital staff, to writing content for the TeenGOSH community webpages and helping design areas of the hospital such as the reception area, which was redeveloped in 2014. You can read more about what the YPF members have been up to through their blog here.

The Forum meets 6 times a year at the hospital and each meeting lasts for the full day, with lunch and snacks provided by the GOSH catering team. They have been brilliant at providing safe food for G, although there are still a few glitches to iron out such as making sure her lunch arrives at the same time as everyone else’s. The 2 meetings that G has attended so far have been extremely different, but overall her experience has been good and she’s keen to continue her involvement with the YPF for the time being. At her most recent meeting – the minutes of which you can find here – they really did cover a whole range of different aspects of hospital life. G has now become something of an expert on the subject of the recruitment process and was able to share what they had been told about the different areas that needed to be covered when GOSH is looking to recruit new members of staff. A professional photographer went along to take photos for the new publicity campaign to raise awareness of the YPF and its role within the hospital and G is looking forward to seeing which photos are chosen for the final published materials. They were also lucky enough to go on a couple of tours of some little known areas of GOSH, including the various sacred places that provide spiritual support for those families from a number of your-halloween-party-2014-in-paris-sizel-161421-649-420different religions and a sneak peek at the Morgan Stanley Garden that was displayed at the Royal Chelsea Flower Show earlier this year. The particular highlight for G was the discussions held around arrangements for the teenage attendees of this year’s Halloween and Christmas parties and she had great fun inventing gory names for the food on offer at Halloween.

Cheese and Onion Skin flakes anyone?

A Survival Guide For School & Allergies

The end of August always seems to be something of a surprise in our household. We arrive home from our holiday feeling relaxed and calm and then almost immediately face a madcap race to reach the finish line of shoes bought, uniform named, PE kits found and bags packed before school starts. In years past I have also had to make sure provisions are packed, discussions had and medical notes updated for M, but, for the first time ever, this year I wasn’t trying to squeeze in a critical meeting alongside my own new start with a new job. img_11331I know that next year when M moves up to our local secondary school it will be a very different picture, but after 3 years of working with the teaching community at our junior school, and with no major changes to contend with, M was able to start in Year 6 without this over-anxious Mum hovering in the background.

Without a doubt we have been incredibly lucky with the amazing support given by the fantastic teaching staff at our local school, but we have also had more than our fair share of bad experiences and teachers who don’t care in the past and I can well remember the anxieties and hours of meticulous planning that heralded the start of every new school year. The novelty of not having to head into the classroom before the end of M’s first week back has still not worn off and I’m certain that it’s thanks to the hard work that’s been put in on all sides to formulate strategies that meet M’s needs and to develop a strong working relationship between home and school that is reliant on open communication that flows both ways.

Over the last few weeks, there’s be a lot of chatter in the online allergy community about the fears that surround the milestone of starting school and, with over 8 years of “parenting-a-school-child-with-allergies” experience under my belt, I’ve been asked what tips I would give to any parent facing this situation for the first time. In all honesty, M’s first few years at school were difficult and certainly not the positive experience we would have liked. We had to deal with a SENCo, who trivialised his allergies because they “…wouldn’t have to call 999 if he ate something he shouldn’t…” and refused to recognise how important it was to communicate his allergies and health issues to any member of staff dealing with him and not just his class teacher, which led to numerous occasions of him being offered food he couldn’t eat. His teachers lost their focus in teaching him because they felt he already had a lot to cope with with his regular appointments at GOSH and his education suffered as speech impediments, dyslexia and dyspraxia were missed by those who worked with him on a day-to-day basis.

Fast-forward to the start of Year 3 and all our negative experiences became a thing of the past. The year actually began at the end of Year 2, when I met with the Head, SENCo and class teacher of his new school to discuss all of M’s health and educational needs and worked with them to put practical solutions into place before the term started. They understood the value of seeing him as more than just his EGID and food allergies, circle-timebut also knew that his health problems were a big part of his everyday life and couldn’t be ignored. At the end of his first week there, M’s teacher held a circle time in class where she shared about M’s ill-health and restricted diet with his classmates. It was done in such a nurturing and non-confrontational manner that by the end of the session M was willing to answer any question that his new friends had about what they had been told himself and has being doing so ever since.

fabed1The information sheets that I had provided were given to the teachers and, combined with the notes they had taken whilst talking with me, used to draw up a healthcare plan for M that covered all possible situations. His on-going bowel control problems were sensitively handled and a contingency plan put in place to ensure that he always has access to a toilet wherever he is in the school. The HCP was written by the school SENCo and then sent home for my review before being published, shared with the whole teaching team and displayed prominently in the staff-room. Even better, every year since then I have been asked to review and amend his HCP to reflect any medical changes that have happened and the school continue to be sympathetic to his needs.

SAM_1175As for his swap box, it has proved to be an invaluable tool in the classroom setting and is something that is really easy to implement. The idea behind the swap box is a simple one – it contains a selection of safe items, be they edible or non-edible, that can be swapped for those unexpected treats that sometimes come into the classroom to celebrate birthdays or other special events. When M’s swap box came into being, it was filled with a mix of Haribo sweets and the odd Lego minifigure and the choice was his as to what he chose to take. Since going elemental 2 years ago, the box now contains Lego, trading cards and other fun small toys and ensures that M never feels that he is missing out when his friends celebrate. What’s more, his teachers have taken inspiration from it for their own purchases of small gifts at Christmas or the end of term and given him something he can enjoy.

I think the biggest secret to our great experience with our Junior school is communication. The lines of communication are always open and actively work in both directions between home and school through meetings, phone calls, e-mails and the home/school book. The willingness of so many of the school staff to learn to support M to the best of their ability has created a level of trust unlike any other and means that I am ea544311f5697d6334b2df7079ccedf9happy to leave M in their more than capable hands on a daily basis. It is a testament to their dedication to their work that, in the last 3 years, the only things that have caused an extended absence from school have been the annual hospital admissions at GOSH. They have always endeavoured to make sure that M is safe whilst at school and the fact that he was able to attend as normal with both his NG feeding tube and his broken leg is incredible. A truly remarkable relationship has grown over the years between our family and so many of the teachers and is something I really value.

They have also nurtured and encouraged M to talk about his allergies and EGID and have shown continued support as he has become an advocate for educating others about his illness. M has held cake sales, run playground games and created short films explaining the impact his diagnosis has on his life. He has developed a confidence in talking to others and 18 months ago was able to answer the questions asked by members of home-school-connectionevery class in the school. When he left his Infants school, he was a child reluctant to talk about his food allergies or hospital appointments because he was scared of being isolated and bullied because of how different he was to everyone else. These days he has an incredibly strong friendship group who look out for him during school hours and think about him when he’s had to be in hospital, and he never thinks twice to share what’s going on with his friends.

If I had to sum it up, I guess I would say this:

Be open, be honest, be available. Keep communicating and tell them how they can make it better if you need to. Do what you can to help them out and don’t forget to say thank you when they get it right.

When September arrives

img_11331September can really only mean one thing: the start of the new school year and all that that entails. This year it has been just that little bit more hectic than usual as some things have changed significantly, whilst others have remained strangely static. G has moved up into Year 8 and is already embracing the addition of 3 new subjects to her timetable,very much enjoying the extra lessons of French, Dance and Drama as well as the move from Food and Textiles to Product Design. With the new school year, so there is also a new school uniform and whilst G is still a little sceptical about its appeal, I am delighted with how smart she looks, though only time will tell if that will last for the full year or not. M is at the start of the final year of his Junior school career and I still can’t quite believe that my baby is  now one of the oldest in the school. We know that this year will be full of challenges from an educational point of view, but with the continued support of his teachers at school and a full year of specialist lessons at our local Dyslexia centre, we are confident that he will be able to achieve his very best.

This September has also signified some major decisions about my own career after I was made redundant out of the blue at the end of the last school year. I am incredibly fortunate that my accountancy training meant that I was offered a new job within a remarkably short time-frame and I started that position the week before the children headed back to school. I felt encouraged by my new role and yet the last 2 weeks IMG_0743[1]have been filled with unexpected angst as one of the other positions I had applied for requested an interview and then offered me the job. After hours of deliberation and discussion and numerous sleepless nights, I have decided to accept this second role as it is an incredibly exciting and challenging position that I believe I would regret turning down. I am really looking forward to starting this new job at the beginning of October, which will bring some significant changes to our household as I will be back to working full-time hours for the first time since G was born, although I am lucky that they are happy to give me flexible hours and everything I need to sometimes work at home.

img_11381September has also been the month where we enjoyed a flying visit from Grandma and Grandpa, Mike’s parents, from Canada. G and M were so excited to see their grandparents for the first time in 4 years that they created a banner to welcome them when we went to collect them from our local airport. img_11431Mike finally finished the renovation job on our 4th bedroom, a task that had been started back in April,
but was interrupted first by the whole saga of M’s broken leg and then the demands of work and our summer holiday in Portugal. The room looks great, but his parents never got to sleep there as Mike had a last-minute panic that the futon bed might be too low for them and instead they slept in G’s room, whilst our gorgeous girlie moved to the freshly painted spare room for a few days. G, M and I all had to be at school and work as normal, but Mike spent some precious time with his parents before they returned home. It was a busy few days for us all, but we managed to squeeze in some family meals and board games where we could.

In the midst of all that busyness, there is one thing that has remained relatively static and that is the current position with M’s health, a real mixed blessing. The last year has been filled with numerous food trials, including during our disastrous admission at GOSH last December, but M is still stuck at just 5 safe foods and despite our hopes to start challenging him again soon, he is not even close to being symptom-free, something we’ve been striving for since his leg came out of plaster at the start of the summer. We are surviving in limbo with minimal medical input as the plan to start some shared gastro care with our local hospital has not yet materialised and we are not due back to GOSH for another couple of months. It is very difficult to see where the next few months will take us, particularly when you add in the added stresses of his Year 6 SATs, and so Mike and I are hoping for the best, but preparing for a bumpy ride.