Tag Archives: Education

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.

Lost in Translation

As Mum to a child with additional health needs, you have to be prepared the minute you venture outside your front door. You don’t just carry with you the medicines, equipment and food items you need to get you through the next few hours relatively unscathed, but also the necessary mental strength to explain your child’s needs to everyone you encounter and ensure that your trip outside of the safe bubble at home goes as smoothly as it possibly can. There are, of course, times when an essential gets left on the kitchen counter and you have to think on your feet and find a solution that will work until you get back home, and, for us, there have been times when, despite the clear explanations given and the seeming comprehension of the waiting staff, mistakes have been made and the children have suffered the consequences of those misunderstandings.

global-travel-destinations

When you add travelling abroad to the mix, those unavoidable stresses become even more intense and, as an allergy Mum, I can tell you that worries about safe food are right at the top of the list. As you may remember, last year we decided to stay in the UK during that first holiday season with a tube in place and had the most amazing week in Cornwall, where we discovered hidden treasures of restaurants and sight-seeing spots that we are still talking about nearly 12 months on. However, we decided that this year we would venture back to a favourite haunt and visit the Algarve in Portugal, with a few extra days in Lisbon tacked on to the start of our trip. We know the resort of Alvor extremely well, but this will be the first time of visiting with such a restricted diet and I have to confess that nerves have been a little greater as we plan our 10-day stay away from home.

One thing I learned early on in our holiday planning with M was to talk to our airline about taking an extra case filled with whatever medicines or foods we will need whilst we’re away and have had superb experiences with both Easyjet to Portugal and Virgin Atlantic to Florida. These conversations paved the way for our long-haul flight to the USA and we found that both the airport lounge and the airline were able to provide safe meals for M when we gave them a little advance warning, but what happens once we’ve landed abroad, especially in a country where we don’t speak a word of the native language? dictionaryOur back-up plan is our self-catering apartment, which means that there is always somewhere to prepare a simple meal of M’s safe foods without too much trouble, but I do, perhaps selfishly, want a holiday from that daily grind of cooking and be able to enjoy a family meal as we used to do when the children were small. Our previous holidays to Portugal were challenging, but not impossible as M loves fish and seafood which are always readily available, but I worried that the current restrictions might be a demand too far.

Fortunately, there are answers to the anxiety about communicating food allergy requirements in a foreign language and whilst it took a little more effort than originally planned, I got our perfect solution in the end. I started by calling Allergy UK, who offer a fantastic service of providing translation cards which “…feature an allergy alert message, an emergency message and a message for use in restaurants to ensure that your food order is free from the particular allergen that causes your reaction…” and can be ordered in any one of 36 languages to cover 70 different allergens. However, I really wanted a bespoke message detailing M’s current safe foods and unfortunately Allergy UK was not able to tailor their cards accordingly, but they did point me in the direction of the amazing Yellow Cross, a company I had never even heard about until recently.

IMG_0824[1]Thanks to a detailed e-mail conversation with Yellow Cross Director, Jane Harrison, she agreed that it would make far more sense to detail what M can eat, rather than a lengthy list of his many allergens and suggested she spoke to their translator to cost out these personalised cards. We settled on appropriate wording, it was passed to their Portuguese translator and I was quoted a very reasonable £20 for a set of 4 eating out translation cards. I confirmed that we wanted the cards, made payment and in less than a week, the finished credit card-sized cards dropped through our letter box. The cards are printed on card and then carefully laminated to extend their life, and I couldn’t be happier with the finished product. They clearly state the wording I had discussed and agreed with Jane and their service was absolutely faultless. I found Yellow Cross willing to help us with our request and I’m certain that the inclusion of these cards in our travel survival pack will ensure that our Portuguese holiday goes with a swing.

M’s happy ending

M had been anxiously counting down, fretting that the day might never come, but finally it arrived with just over a week to go until the end of term and I had left him at school that morning absolutely buzzing with excitement about everything planned for the day. It had been marked as an important day ever since his last fracture clinic appointment 3 weeks before, which you may remember showed that the break was not mending as quickly as the orthopaedic consultants would have liked and left M sporting his rather snazzy sarmiento cast for a few more weeks. IMG_0506[1]During that unexpected extra time, M had really made the effort to use his leg even more and became scarily fast and adept at using his crutches in every situation. The last week saw even more development as he more or less abandoned his crutches at home and finally started putting his full weight on his left leg. All this to ensure that that cast would well and truly be removed that afternoon and be needed no more.

Our afternoon started with a DEXA scan at the rheumatology department of our local hospital to assess M’s bone density. The severity of both this break and his previous broken arm alongside the longer than anticipated recovery time had rung a few alarm bells for his gastro team and they wanted to check that his restricted diet and years of malabsorption issues hadn’t had a detrimental effect on his bones. Although the blood tests done during his December admission at GOSH had suggested his calcium levels were fine, this additional test would give us a clear picture of his bones and hopefully put our minds at rest. I had been warned that M would need to lie still for up to 45 minutes, something I doubted would be do-able without a lot of persuasion, by which, of course, I mean bribery, but he promised to try his hardest as he realised how important it was to get these results. Fortunately, the scan itself actually took less than 10 minutes to complete and whilst M did have to lie very still, he closed his eyes and tried to relax as the bed and scanner arm twisted and turned around him to take images from all the necessary angles.

DEXA scan over, we had just enough time to walk across to the outpatients department for his fracture clinic appointment. With our timing near on perfect, it was almost straight into the x-ray suite, where M chatted away with the radiographer as if he was an old friend and went through all the motions to get the perfect set of pictures of the fracture site. From there, it was straight into clinic and minutes later into the plaster room to have his sarmiento cast removed. Ear defenders were quickly put into place before the saw was started and M’s expressive face reflected his nerves and the mild discomfort as the plaster technician cut through the cast and the vibrations disturbed his sensitive leg. The front half was removed and trimmed as M wanted to bring it home as a memento of the last 6 weeks and I flat-out refused to bring home the back half, covered as it was with layers of dirt, sweat and oodles of dead skin.

IMG_0777[1]M and I sat waiting for the orthopaedic consultant to look at his x-rays before giving us his opinion, so I tentatively peeled back the tubigrip stocking that had been the only barrier between his leg and the plaster for the last 3 months. His left leg was a little skinnier than his right, though not as much as we had feared it might be, but was also incredibly hairy, something we hadn’t anticipated at all. A little research told us that when a cast is in place for an extended period, it causes constant irritation of the skin and so the hair grows to form a protective layer between the skin and the plaster cast. It was a completely unexpected insight into what M might look like when he eventually hits those dreaded teen years and puberty – and he really wasn’t impressed! In stark contrast to his skinny, white and very hairy leg, M’s foot was almost orange in colour and as scaly as his bearded dragon thanks to 13 weeks of no washing and hot weather. I snapped a quick photo to show it to M and the entire fracture clinic must have wondered what was going on as he and I dissolved into fits of giggles as we tried to decide the best way to remove layer after layer of the dead, scaly skin. For the first time ever, M couldn’t wait to get home and jump into the bath and he stayed in it for a long time that evening in an attempt to remove both dry skin and hair.

IMG_0783[1]We were sent home with a walking boot and crutches to help ease him back into the routine of walking and exercising without his leg in a cast and within 3 weeks both had been abandoned to one side. We’ve been back for our final fracture clinic, where M was discharged with a clean bill of health and permission from the consultant to participate in as many of the activities as he wants at next week’s activity camp. Unbelievably there is no physiotherapy available for M through the NHS, but we have an excellent private physio in a nearby town and M will have a couple of sessions there to get him well on the road to recovery. He is having to learn to pace himself, something my hyperactive 10 year-old is not very good at doing, but the aching leg that results from a couple of hours running around our garden with G is a harsh reminder that his leg won’t just bounce back to where it was at the start of the year. It will take a few months to recover the strength, muscle tone and mobility that M is used to, but some hard work and focus will get him there in the end.

Most importantly, M got the happy ending he’d been hoping for since that miserable day in April. He was able to spend his last week of Year 5 back in school without crutches and even had some time back outside in the playground with his peers. And nothing will beat the absolute joy I felt as I watched him disappear from the classroom surrounded by his supportive friends on the last day of term.

Breakfast Bonanza!

As I mentioned the other week, we came home from the Allergy & FreeFrom Show with bags full of new allergy-friendly goodies for G and M to taste test and review, and they have already made a great start in trying them all out. I originally planned a single blog post to cover our favourites, but soon realised that there were just too many to cover in a single piece of writing and that I would need to split my categories up instead. What better way to do this than by looking at these products in terms of the meals where we’ll be using them, and where better to start than with breakfast?

Breakfast has long been the bane of our household, with M following steadily in my footsteps as a reluctant eater of a meal first thing in the morning. Whilst I can, and do, have a later start to my day by munching on something in the office, M needs to eat before he goes to school and all too frequently this is where we’ve hit stalemate. I’ve turned my hand to make breakfast muffins in the past, but even those had a limited shelf-life of success and it was quickly back to the drawing board once his diet became more restricted. Every day has been a battle, mostly one I’m more than happy to fight, but on other days, well, not so much and we compromise on a glass of rice milk if nothing else. However, these past 2 weeks have been like no other and M has been up, dressed and downstairs asking for breakfast before I’ve even had time to take a breath every day. Every. single. day. Vive la révolution!

IMG_0689[1]The reason for this change of heart? The discovery of Rice Flakes Porridge courtesy of the amazing Delicious Alchemy, not something new to the market, but most definitely new to us. I’ll be honest, it is a brand I’d heard about in passing more than once, but I hadn’t really spent much time investigating it as I believed it to be big on the gluten-free front and not much else. Oh, was I wrong. As you will discover from their website, Delicious Alchemy was launched in 2006 by Emma Killilea, a coeliac who was frustrated and disappointed by the gluten-free options out there and decided to do something about it. The company has gone from strength to strength in the past 10 years and now works with a number of mainstream supermarkets and stockists to get their products on shop shelves. G was drawn to their stand by the delicious gluten- and dairy-free brownies that were wafted under her nose and I soon got chatting to their finance chap, where we swiftly found common ground on both the accountancy and allergy-friendly fronts. Despite G’s sighs of utter joy about the brownies, I wasn’t drawn to buying the mix given I’m very much a “cooking from scratch” fan, but once I spotted the packets of porridge flakes nestled amongst the other goodies, I felt certain this might prove to be our first purchase of the show. Delighted to IMG_0695[1]discover that the porridge contains rice and absolutely nothing else, I quickly snaffled 3 bags with my fingers tightly crossed that M would actually enjoy it as much as he insisted he would. I needn’t have worried. The rice porridge has been a massive success and is so easy to make too. Just 3 minutes in the microwave with some rice milk and his breakfast of choice is ready. Not only has he insisted on having it every morning, but it has become a popular bedtime snack of as well. I’m more than a little excited that this might also open up some options for snacks for M as delicacies such as flapjacks, biscuits and muffins all readily spring to mind.

 

M’s marks: 11/10 (and as he’s eaten 1.5 bags in a week, I’m thinking it’s an unmistakable hit!)

IMG_0687[1]Another producer I was determined to visit with G was Nutri-brex (recently rebranded from Nutri-bix), the overall winner of this year’s FreeFrom Food Awards and one of my personal favourites. Ever since I first tasted this breakfast cereal during my stint as a FFFA16 judge, I wanted to get some for G to try, but it has proved disappointingly difficult to find it in the less-than-well-stocked aisles of my local supermarkets. By the time we finally made it to their stand, G had gone at least 10 minutes without gorging herself on one of the many allergy-friendly samples that were on offer and was more than ready to try some of this cereal, in an attempt to shut Mum up if nothing else. The company had launched a brand new product at the show and G decided she would taste that with the added extras of some soya vanilla yoghurt and grated chocolate on top. IMG_0691[1]She was instantly won over and 2 boxes of the Coconut and Crispy Rice cereal bars soon joined the 2 original boxes that formed part of our goodie bags. Since coming home, G has enjoyed the original bars with raisins for her breakfasts and I’m so glad that I was finally able to introduce her to this product. It is tantalisingly close to being safe for M, but sadly until we trial sorghum, not something that is high priority for him right now, he’ll just have to stick to the porridge.

G’s marks: 10/10

IMG_0692[1]The day also introduced a couple of new-to-us milks, which have been brought home to trial. M is already very keen on the Rude Health Brown Rice Drink, which he claims has a slightly sweeter and nutty flavour in comparison to his regular rice milk. Whilst I love finding new products for M, given the recent problems with his broken leg, I prefer being able to buy rice milk that is fortified with calcium, something that this one doesn’t appear to be. Add to that the price of this product, which at around £2 per litre makes it considerably more expensive than the Rice Dream I usually buy for him, this will be saved as a treat for special occasions rather than an everyday commodity.

M’s marks: 10/10

IMG_0693[1]As for this last product, well the jury is definitely still out in the 7Y2D household and I will be withholding my judgement on it for quite a while. If you follow Nathalie at The Intolerant Gourmand, you may well have read about her 4-week trial of a2 milk and the conclusions she drew about it. I’ll be honest, the information we were given at the Show and that I have read via their website has left me more than a little confused. I understand the principles behind the milk and the exclusion of the a1 protein, but am unclear as to whether this means it is or isn’t safe for those struggling with lactose intolerance. Their representatives on the stand were more than happy to help, but not all of them were fully to speed with the claims the milk makes and whether it would be ok for G to drink it or not, given she can’t do dairy, but can tolerate goats’ milk. It’s a difficult one for me to assess as I have no intention of trialling G on it under the circumstances, but fortunately I had another willing tester in Mike, who is also lactose intolerant and was happy to give a2 milk a try, especially as they gave us a free carton to take away with us! The milk is incredibly creamy, far more so that either Mike and I expected for semi-skimmed and it took a couple of days for Mike to reach any conclusions. Whilst his stomach was certainly aware that he was drinking cows’ milk, something he hasn’t drunk for years, he didn’t suffer any extreme reactions to it. I’m not sure I’d rush to buy it again and would recommend that any one thinking of trying it does a lot of research first.

Mike’s marks: 8/10 and he commented that as someone who hasn’t had cows’ milk for years, the flavour took some getting used to.

Allergy and FreeFrom Show 2016

I am so glad that we made the decision to visit last weekend’s Allergy and Freefrom Show at Olympia London as we had the most amazing day and made some great finds. The show has always been one of those lovely experiences for the children, where they have been able to try so many of the foods and drinks on offer, although we have constantly had to remind them that they can’t assume that everything is safe, even though so many of the offerings are. IMG_0645[1]This year was no different and G ate her way around the show, delighted to try some old favourites as well as the new products that we hadn’t seen before. It was understandably a much harder show for M this time than ever before, but he pinpointed on the map which stalls he wanted to visit and was thrilled that we managed to find some great new food options for him too. I am also extremely glad that we chose to take the wheelchair with us as it proved to be useful, not just for helping M negotiate the crowds flocking round each stall, but also as a receptacle for the numerous bags of goodies we gained during the day.

The day was also a great chance to catch up with some old friends from the blogosphere and allergy community, though this year I didn’t manage to make the bloggers meet-up arranged for the Saturday morningIMG_0647[1]. It was fantastic to see G and M recognised and welcomed by so many of these lovely individuals and they happily chatted away almost as much as Mike and I did. We spent some time at the Allergy Adventures stand, where Hailey and her crew of cheerful helpers were once again providing entertainment for the children in the guise of paper crafts and story-telling time, although they couldn’t persuade G and M to make the paper lollipops planned. Instead my pair went off-piste and created an array of paper lizard heads (M) and chatterboxes (G) to fill their time, some of which I think were left behind and not just stuffed into pockets and down the sides of the wheelchair.

Between us, we came home with a huge selection of new products for both children to try and I can’t wait to share their reviews of these foods with you, especially those that are not just new to us, but to the market too. We spent the entire day at Olympia, getting in when the doors opened at 10am and leaving as the tannoy announced that the Show was closed at 5pm  and I could quite easily have spent another day IMG_0651[1]discovering all those hidden gems that were tucked away in remote corners of the space. We had taken some safe food for M with us for his lunch as we just didn’t know what would be available at the site and G enjoyed a gluten- and dairy-free pizza from Schar that was cooked to order. The Show now visits 3 UK locations during the year – London, Liverpool and Glasgow – and I would highly recommend a visit if you get a chance to go. It is a brilliant day out for anyone living with food allergies and offers the opportunity to discover so many safe alternatives that often don’t make it to the High Street.

Any plans for the weekend?

We’ve got a weekend in London ahead of us and, being our usual optimistic selves, have planned a whole host of activities to keep us busy at every interval. Thanks to remarkable coincidence, we are able to combine 2 opportunities that have come our way and I’m hoping that Sunday evening will see us back home, exhausted, but also exhilarated by our experiences.

Allergy_Olympia_Logo_2Last year we decided somewhat reluctantly not to make our annual pilgrimage to the Allergy & Free From Show in London as M was in the midst of being tube-fed and had, at that point, only 4 safe foods in hand. Whilst I would have loved the opportunity to explore the offerings we’ve found at these shows in the past, I knew in my heart of hearts that it was more than M would be able to cope with and I wasn’t prepared to put him into what was bound to be an emotion-filled, stressful situation. G and I did toy with the idea of going without the boys, but other events came along and we enjoyed a weekend at home instead. To my surprise, M was incredibly disappointed not to go and was insistent that when this year’s show rolled around, he wanted to attend and was as keen as we have been before. At the start of this year, Mike and I discussed whether we really would go, talked it over at length with M and finally took the plunge and got our tickets for this Saturday. Over this past week or so, M and I have been looking at the businesses that will have stalls in Olympia when the show opens on Friday and he’s already made a note of a few he wants to visit. As I have become more active in the allergy community over the last 12 months or so, especially through friendships built at the FreeFrom Food Awards in February, we are all looking forward to meeting up with some familiar faces during our visit. This show is an amazing event and one that I would highly recommend to anyone living with allergies, or indeed following a vegan lifestyle. You can still get tickets to attend by clicking on this link and the show will be there until Sunday.

GOSH-logoSunday brings a different opportunity and an exciting one for G. When M and I took part in this year’s PLACE assessment at GOSH, I met and got chatting to Fiona Jones, the Children and Young people’s Participation officer at the hospital. One of her roles is to promote the GOSH YPF, or Young People’s Forum, something I had never heard about before, but was interested and keen to find out more. The YPF is for patients, ex-patients or siblings of patients at GOSH who are aged between 11-25 years old and who are interested in expressing their opinions about how GOSH can best support its teenage patients as well as being involved in projects that will help make the hospital experience a positive one for patients and their families. Unfortunately, M is too young to become a YPF member just yet, but Fiona asked if I thought G would like to become involved and I promised to ask her as soon as I could. To my delight, G was excited to be asked to join the GOSH YPF and is looking forward to attending her very first meeting on Sunday. focus-groupBoth children have already been lending a hand by trialling and reviewing an on-line project called Digital Badges, something they have really enjoyed trying out over the last 2 months or so, especially giving their feedback on how this project worked. G will spend her day with this group on Sunday at GOSH, whilst Mike, M and I explore the nearby British Museum and their Sutton Hoo exhibit and I can’t wait to hear all about it during our return journey.

FreeFrom Eating Out Awards 2016

FFEOA 16 200X200As promised in my last blog, it’s now the turn of the second of the recently opened awards and one that I’m really delighted to be able to share with you. The FreeFrom Eating Out Awards 2016 are now heading into their 3rd year and are part of the Foodsmatter family  run by the same, highly successful team who organises the FreeFrom Food Awards and FreeFrom Skincare Awards. The Awards were launched to show that creating gluten, dairy and allergen free food that would be as good, if not better, than ‘normal’ food was completely possible as well as encouraging innovation and celebrating excellence in the freefrom food service industry. Working with members of the allergy community, including website Can I Eat There?, experts and bloggers, this year the awards are hoping to find more hidden gems than ever before.

Eating out is a treat that we love to be able to do as a family and I’m always on the look-out for new restaurants to visit with the children, be they part of a chain or independent, especially when I can be confident that they can and will prepare safe food that we all can enjoy. I have already suggested some of our favourite haunts to the #FFEOA16 team and would ask you to do the same if there are any you would love to see recognised for their allergy awareness. These are restaurants who have taken on board the changes to EU legislation back in December 2014 regarding the provision of information about the presence of top 14 allergens in their dishes and, rather than continuing to complain that its cramping their style, have embraced the changes and used them to make a difference.

This year there are 8 award categories:

  • Cafes & teashops
  • Fish & Chip shops
  • Pubs & pub restaurants
  • Restaurants
  • Corporate hospitality and catering – venues and outside catering
  • Hotels & guesthouses
  • Schools, colleges and universities
  • Foods manufactured for food service

Just as with the Allergy UK Hero Awards, it’s great to see such a cross-section of eating out venues included in the #FFEOA, especially the corporate hospitality and schools, colleges and universities categories. I will be watching the progress of these awards with interest and look forward to being able to tell you the final winners after the presentation in late November. In the meantime, I want to share with you the winner of the first ever Pathfinder Award, which has been given by #FFEOA to mark the opening of the 2016 competition. The Pathfinder Award is a discretionary award for anyone, or any establishment, that is really pushing the boundaries of freefrom and thinking outside that box. The 2016 winner is Executive Chef Dominic Teague and his team at restaurant Indigo at One Aldwych Hotel, Covent Garden, for their ground-breaking work in catering for those on freefrom diets.

DT

Last year, after a brief closure for kitchen refurbishment, the restaurant created massive social media buzz when it was revealed that it was now serving a new and entirely gluten- and dairy-free menu and had been for 3 months without anyone realising it. Dominic had been inspired by increasing customer demand for gluten- and dairy-free food and had taken the opportunity of his kitchen refurb to ensure that he could continually create culinary masterpieces in a freefrom-friendly environment. The compliments came flooding in, from regular non-allergy customers and new diners alike and since revealing the truth to the world, Indigo has seen a huge increase in the number of its bookings, which only goes to show it really can be done if only you put your mind to it.

You can find out more about Indigo and Dominic Teague’s revolutionary decision on the #FFEOA16 website here.

Hollywood-inspired

13227528_948528031911468_2074589086660293308_oIt never ceases to amaze me that there is a huge number of allergy-suffering children out there who love nothing more to cook despite their dietary restrictions. I know of so many EGID children, even those with feeding tubes, who have a passion to cook and have taken qualifications in food technology, even though there may be very little they can eat. One such story that has recently hit the headlines is of Abigail Carper, who is living with Eosinophilic Esophagitis (Eoe) in the US. She wrote to well-known celebrity chef, Gordon Ramsay challenging him to cook using only the limited safe foods she currently has and was delighted when he not only agreed, but invited her to join him in LA, where he prepared a meal that her Mum described as “a heavenly phenomenon“. It’s encouraging to hear that Gordon Ramsay and his staff also took the time to understand more about EGID, how to correctly read food labels and which foods could and couldn’t be used in their tailored meal.

Big thanks to Abby and her Mum for allowing me to share these photos of her amazing day

M and G are no different and both love watching cooking programmes on TV almost as much as I do. BBC offerings such as the “Great British Bake-off” and its recent spin-off, “GBBO Crème de la Crème”, are constant favourites in our household and nothing beats the high-energy episodes of “Diners, Drive-ins and Dives” on the Food Network Channel when there’s 30 minutes to spare at the end of the day. All of these have led to requests from M in particular for me to enter the competitions or invest in a restaurant for Guy Fieri to visit, thus showing off what he thinks of as my considerable culinary skills. Despite the massive compliments from what must be my biggest fan, I’m not convinced that my M-friendly bakes would live up to the standards expected on our favourite shows and I won’t be entering any cooking competitions any time soon. Unless an allergy one pops up and then I might…just might…be tempted!

As well as being amazed by the creativity and culinary techniques of the chefs on these programmes, I also find myself being inspired by their bakes and thinking through whether any of the recipes can be tweaked to bring something new to M’s diet. I know I’m not the only one as fellow EGID Mum and friend Berenice, kindly wrote a guest post for me last year about her attempt to create an allergy-friendly Madeira cake, after seeing an episode of GBBO. No matter the time of year, there always seems to be one programme or another that we can enjoy together as a family and this May has been no different. All it took was a single 30 second trailer and M was smitten, this time with “Paul Hollywood City Bakes“. 566777371_960, which sees Paul Hollywood, one of the stars of GBBO, visiting cities around the world, investigating their bakes, meeting bakers and putting his own unique twist on a speciality dish in each venue.

M has been entranced by the entire series, which has proven to be a great distraction from his broken leg. From the laws surrounding the baking of a particular cake in Munich, to the bullet-ridden suite, location of a mafia killing at the Biltmore in Miami, he has hardly paused for breath when regaling anyone who’ll listen with the stories that those half-hour episodes have shared. We now have a long list of “must-go-to” holiday destinations that both G and M are desperate to visit as soon as it’s even remotely possible. G was delighted to see a couple of naturally gluten-free bakes highlighted and even better, there have been the occasional bakes which I am sure I could translate into M-friendly versions without too much effort. I’ve yet to decide which of these I will turn my hand to first, but you can be certain that I will share those recipes once they’ve passed the rigorous testing of my discerning duo.