A Brewing Storm

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

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

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

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

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

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

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New beginnings

It’s hard to believe that 2 years ago I was working as an accountant in a small local, family run practice, happily going from home to school to work and back again, never imagining that big changes were just around the corner. Less than 3 months later, I was made redundant overnight, quite literally, and unexpectedly found myself back on the hunt in the job market, not quite sure where I was headed, but knowing I wanted something new.

I decided to make what felt like a strategic decision about a change in my career path and chose to move into the charity sector. My new job was with a local museum, which was moving from being purely a project to becoming a successful operational business and it has come with a series of challenges, ups and downs, long hours and late nights. I have had to work out a way to deal with the unpleasant reality of workplace bullying and have come out the other side, hopefully a stronger person for it.

All things considered, the last 18 months have stretched and developed me in so many ways and I have had the pleasure of working with some of the loveliest people I have met in my working life. So, tomorrow is going to be a tough and no doubt emotional day. Back in January, for a number of reasons, I decided that the time was right to move on and tomorrow is my last day at the museum. I am taking up a new role as the Head of Finance and Premises with our regional Air Ambulance charity and I can’t wait to get started. I have been privileged to be a part of an exciting new venture and I will miss massively the people who have supported me, laughed with me and had the odd drink or 3 with me since I began. I wish them all every success with their future careers, wherever their paths might take them and I’m looking forward to embarking on the next part of my own adventure.

#NationalSiblingsDay

I don’t have one, whilst Mike’s the youngest of three. At the end of the day, though they might fight like cat and dog at times, the one thing I can confidently depend on being true is that, no matter what else happens, G and M always have each other’s back. They can criticise the other to their heart’s content, but woe betide anyone who thinks to express their opinion of one sibling in the other’s hearing. Even when one is trouble at home, the other can often be found defending what happened (she only did it because of something I said), offering cuddles to calm down or rushing off to find Cat (for M) or the replacement blanket (for G). Today is #NationalSiblingsDay, so I thought it only fitting to recognise the infallible bond between my 2.

And I’m back!

You might have noticed that my blog has been quiet for a few weeks and, in time, I will explain a little more about the need…my need… for an extended silence as life has happened around us. However, we’re home after some family time away from home over the Easter holidays and I’m back with a vengeance with just so many reviews, recipes and photos to share from the last month or so.

But, before I get to the fun bits, I thought there was a much-needed health update, which is desperately long overdue. On the medical front, things are still ticking along without much intervention from anyone other than us. We haven’t been seen at GOSH for over a year and I have no idea when or if an appointment will come through the door. The gastro department there are very much working on moving patients back into local care and whilst I have steadfastly refused to let them discharge M from their care fully, they have definitely taken a step back and are in the background in an advisory capacity only should we want or need to call on them.

It also feels a little as if our local hospital has shrugged their shoulders with something of a “…we don’t really know or understand what’s going on with him…” attitude and are touching base with us on a fairly infrequent basis. I don’t really blame them as, for the most part, M is just going along as always and frankly I’m certain that I know far more about managing the ups and downs of his EGID on a day-to-day basis than anyone else. The one biggest change that has hit us has been the confirmation that there is almost definitely a mast cell problem lying alongside the EGID, but as the treatment is more or less the same for both, that diagnosis hasn’t made a difference to him or us in any way.

Food-wise, we’re now tentatively up to around the 9 or 10 food mark, having introduced onion, bacon and bananas on a regular basis and allowing the occasional other food creep in when circumstances call for it and we can be reasonably confident we can manage the outcome. These 3 foods have really added to my repertoire of recipes and make cooking so much more interesting and flavourful for M. Holidays continue to be the time when we really stretch our boundaries and whilst there are always consequences to live with – some of which are easier than others – our approach has led to a much happier M.

Both children are doing well at school with glowing “short” reports and parents’ evenings for them. G has selected her GCSE options with relatively little fuss or argument or discussion and we’re heading with a little trepidation into the wonderful world of humanities combined with dance. She recently took and passed her Grade 3 clarinet exam, a day I wasn’t sure we’d ever see and is also teaching herself to play the keyboard, guitar and ukulele in any spare moments she finds at home. G and M also recently took part in a regional Stagecoach performance celebrating 30 years of Stagecoach and loved every moment of it. It was great to watch them from the wings (I was back in chaperone role once more) as they danced and sang with enthusiasm on stage. As you can see, it’s been a busy few weeks and there’s just so much to share that I’m not entirely certain where I’ll begin!

Hitting 12

It may be International Women’s Day, Jedi Day (thanks to Mark Hamill’s Hollywood star) and the eve of National Science week, but in our household, there’s only 1 thing that March 8th marks and that’s young Master M’s birthday. Except this year he’s not quite so young, having hit 12 years already – and just how did that happen? – and I can’t believe that this will be the last year that we only have 1 teenager in our household.

Today has been a great day at school for my youngest and despite a reluctant start to the day, he came bouncing back to the car at 3.30pm, keen to share everything that had been good about it. It’s not been the celebration that perhaps it might have been given the topsy-turvy nature of the last 2 weeks for our family, but it will be the celebration that we want it to be.

Happy 12th to my beautiful, strong, sensitive boy; who pushes the boundaries at every step, but has a true heart of gold xxx

Show Your Rare

The last day of February every year is recognised as Rare Disease Day. It’s a day to raise awareness of rare diseases and acknowledge the impact they can have on those living with them and their families. This year marks a decade since the first Rare Disease Day was launched and will see thousands of people from across the world come together to advocate for greater patient involvement when it comes to research into rare diseases.

Rare Disease Day was launched on February 29 2008 as “A rare day for very special people,” and has grown from being recognised in just 18 countries to now hosting events in over 100 countries worldwide. EURODIS, the European Organisation for Rare Diseases, organises the international campaign, whilst National alliances and other patient organisations host events locally. There are over 6,000 rare diseases known to be in existence and 80% of these have been identified as having genetic origins. Astonishingly, approximately 5 new rare diseases are described in medical literature every week.

Rare diseases can affect everyone, they’re not fussy about who they pick on. Over 3.5million people in the UK are affected by a rare disease, which equates to 1 in every 17 UK nationals. Somewhere between 50% and 75% of rare diseases will affect children and scarily, 30% of rare disease patients will die before they reach their 5th birthday. The symptoms of a rare disease are frequently multiple and varied and not only are they not exclusive to that illness, but neither are they all experienced by all patients, which makes diagnosis a long and drawn out process. All too often the diseases are misdiagnosed and beneficial treatment can be unavoidably delayed. A lack of scientific knowledge and consensus throughout the medical community can add to the complexity of reaching a diagnosis and adds significantly to the burdens placed on the patient and their family.

Imagine being told that your child has a chronic illness that neither you, nor most of the medical professionals you’ll end up meeting from that point on, can pronounce – or have even heard of until that moment. Imagine finding out that that illness is rare: that around 1 in 10,000 people are diagnosed with the most common form, but that your child has one of the rarest forms and that there is little research into it. Imagine learning that even the medical community struggles to reach a consensus about this rare disease and whether it really exists or is simply part of a much bigger picture – and having to live with the reality of this rare disease and its effects on your family’s life on a daily basis.

And then imagine finding out, less than 5 years after the time when that initial diagnosis was finally made, that another rare disease has landed on your table and you need to find out as much as you can about it to make sure your growing child is receiving the very best care possible. That happened to us about 6 months ago, when we started to explore whether M could also be living with Mast Cell Activation Syndrome, or MCAS. It seems highly likely that he is as this is a condition that closely resembles EGID with its symptoms and is a problem with another type of blood cell: the mast cell. Treatment-wise, there is nothing more we can do than we are already doing in terms of his medication and dietary restrictions and so in many ways this is just another label to pop in our pocket and pull out from time to time. All we can do is stay positive, keep encouraging him to live life to its fullest and enjoy every moment we can.

 

Daddy’s new toy

Somehow, and I’m not entirely certain how, we have limped our way through what has proved to be a tough 5-weeks and finally Term 3 has drawn to a close and half-term has arrived. M’s health was hit hard when he came down with Aussie ‘flu just into the New Year and the term has been turned topsy-turvy as he’s struggled with high temperatures, heavy head colds, aching joints, lethargy and low energy levels. He’s also been trying to cope with unbelievable bouts of insomnia since the end of last term, a problem that has taken its toll not only on M, but the rest of the household too as Mike and I have juggled home and work as well as the impact of the serial bed-hopping that has become an almost nightly occurrence. Except on Wednesdays. I’m not yet sure what makes Wednesdays so special, but over the last couple of weeks, M has achieved something that has been such a rare event that I can pretty much count the number of times it has happened in his lifetime on the fingers of one hand. In bed – his bed – fast asleep and then nearly 10 blissful hours of interrupted sleep for the rest of us!

One of the highlights of half-term has been opportunity to finally try out the new toy that Mike had for Christmas. A stove-top smoker. Following the discovery of what quickly became a new favourite with M when we were in Greece last summer, Mike has been exploring whether there was any way to replicate the delicate flavours of this smoked chicken at home. He talked a few times about the possibility of buying a smoker, but as so often happens in our household, the chat didn’t lead anyway and eventually the idea faded away into seeming obscurity. However, whilst all thoughts of a smoker had disappeared from Mike’s head, it had taken up permanent residence in my mind and I was undertaking some research of my own.

Finding the perfect Christmas present for my other half is always a challenge, particularly as his birthday is just 2 months before, but waiting until December gave me enough time to read around the subject and pick out what I hoped would be the perfect choice. It came as a complete surprise on Christmas day and a present that both Mike and M were looking forward to experimenting with in the New Year. Sadly ‘flu got in the way of any such trials in January, but Mike being at home with the children for half-term gave them the perfect opportunity to give the smoker and a variety of wood chips a whirl.

By the end of the week, it turns out that Mike’s worked hard to see just what flavours he can produce and M feels that there’s still some work to be done to perfect the chicken to his exacting standards. It appears it’s all too easy to over-smoke the meat and end up with a bitter dinner, rather than the aromatic flavours we were hoping to find. M has suggested adding lemon and herbs to help flavour the chicken and I’ve no doubt that Mike’s new toy will be a source of much fun and experimentation over the coming months.

#FFFA18: The Shortlist

It’s really only been a couple of weeks since I was a third-time judge at this year’s FFFA and the exciting news is that the shortlist for the Awards has already been published. I absolutely love scanning through the shortlist, even for those categories where I’ve been involved in the judging, because I find it so encouraging to discover a plethora of products, many of which I’ve never heard of before, which will make such a difference to those living with a variety of food allergies. As well as those I’ve already identified as particular highlights for me on the day, I was excited to see La Crèmerie’s rice yoghurt detailed on the Milk Product Alternatives list. I actually discovered this rice yoghurt during my visit to the Foodmatters Live conference back in November and whilst I have yet to try this with M, I know it’s something that could be a real game-changer for him and I’d love to see this do well in the overall Awards.

What has been even better for me this year than list after list of amazing foods, is the final named category: the FreeFrom Hero Award. Back in December I was asked if there was anyone I would like to nominate for this special category and it’s been really encouraging to us as a family to see our 2 nominees appear on the final shortlist. You can only imagine my delight this week as I received copies of the emails that have been sent to tell our very own heroes of their success. When you look at the list I’ve no doubt that you’ll immediately be able to identify one of the nominations I made, that of Steve Whitaker and Jason Conners, the cooks at Over The Wall. Ultimately I don’t know whether either of our suggestions will be the winners of the category, but I wanted to share my reasons for nominating this fantastic pair for special recognition at FFFA18:

Your reason for nominating them: M’s rare gastro condition, complex food allergies, restricted diet and associated problems has meant that he has never been able to stay away from home except with his Grandma. At nearly 12, he has never stayed away on a school camp or even had a sleepover with friends. In 2016, he was offered a place on the South Health Challenges Camp run by charity, Over The Wall, which meant he would be able to stay away from home for a week, fully looked after by an amazing group of volunteers who cheerfully give their time to support these children, who suffer with life-changing illnesses.

In preparation for the week, I spoke to OTW several times to discuss M’s dietary needs and at least 2 months before camp, I was sent a sample menu of the food that the chefs were planning to cook for him based on his extremely limited diet (just 5 foods plus 1 oil and sugar), which was truly amazing and that M loved the sound of. We touched base the week before camp to just check whether there were any changes and when we arrived at camp, the staff took time to meet with me to discuss all of his needs.

M ate like a king the entire week he was away and reluctantly told me that “Sorry Mummy, but their food was even better than yours!”. He was kept safe, had no allergic reactions because of their incredible awareness of the care that needed to be taken, was able to make friends with others facing similar health challenges, tried out so many experiences he’d never been able to have before and just felt like a child as his health problems firmly took a back seat to the more important job of him just having fun. As Mum, I felt confident that they knew what they needed to do to support him and have subsequently seen just how amazing their care can be when they called whilst G was away on sibling camp because they were concerned that she wasn’t eating the GF/DF food they were preparing for her.

We are hoping that he will be able to go to OTW camp again this year, but are just so grateful that he even had that opportunity to experience it once. These chefs (and all staff to be honest!) really deserve recognition for making M’s first experience of being away from home such a positive one.

The results will be announced on Twitter, on the evening of April 17th (@FFFoodAwards) and I’m hoping that we might once again be able to be there to recognise the hard work and incredible dedication of all those shortlisted finalists as well as celebrating the success stories of the worthy winners.

Marking 100 years of Votes for Women

2018 is an important year. This year marks the centenary of the end of World War 1 and there are a number of events planned across the UK to commemorate the occasion, including the ambitious plan to recruit 1,400 new bell-ringers – the number of ringers lost during the war – to allow church and other bells to ring out on November 11th, just as they did to mark the end of WWI in 1918. Nearly two years ago, young men across the UK remembered the start of the Battle of the Somme in an incredibly heartfelt way and I am certain that this year will see similar shows of respect and passion as we remember those who sacrificed so much for us all.

However, today marks a different centenary, one that is just as significant and whilst not many of us would argue to know much about the passing of the Representation of People Act 1918 per se, I’m certain we all understand what that Act achieved – allowing women to finally have the vote. This Act was an important first step in the journey to equality for men and women and whilst there continued to be a number of restrictions on which women could vote until the passing of the Equal Franchise Act in 1928, when finally all men and women over the age of 21 had the vote, 1918 was the recognition of the hard work of the Suffrage movement, both Suffragettes and Suffragists, and the irreplaceable contribution of women during the years of WWI.

G spent time studying the Suffrage movement during her History lessons last year at school and I was delighted to discover that she was asked to research and learn more about this fascinating era of UK History. She had to explore the arguments for and against the actions of the two groups fighting for women’s votes: the Suffragettes, those who were prepared to fight hard, sometimes through violent demonstration; and the Suffragists, a group who fought just as hard but through using non-violent tactics; and then consider which group she would more likely have joined.

I cannot stress how important I think it is for girls today to be taught about the battles fought, both figuratively and literally, to achieve women’s votes. Since I turned 18, I have actively made an effort to vote in every local and national election and will encourage G to do the same when she reaches her majority. It is a 100 years since women won the vote in the UK, which may seem like a part of the dim and distant part to my 14-year-old and her friends, but the reality is that, even during their lifetime, there have been other women fighting this battle and the women of Saudi Arabia only achieved that right just 7 short years ago.

Third year a charm

When the email inviting me to once again participate as a judge of this year’s Free From Food Awards dropped into my inbox a couple of months ago, I started the necessary planning to ensure I could get to London and be away from home for a couple of days. Mike was booked to work from home for my 2 days of judging, I arranged for a bed at the FFFA headquarters and my annual leave was booked from work. It seemed as if everything had been meticulously planned and since the start of the year, I’ve been counting down excitedly to the days themselves. Needless to say, and just in case you hadn’t picked up from the tone of my above writing, things didn’t quite go as expected and life once again proved that even the best laid plans can go awry.

First of all, my arrangements to go the night before my first day of judging had to be tweaked when Mike was due to be working over 2 hours away and wouldn’t be home before 7pm that evening. The thought of the 2 hour train journey late at night and then travelling on to the FFFA house with the likelihood that I wouldn’t arrive much before 10.30pm that night meant that instead I had a quick rethink and booked myself on to the 6am train the following morning. With the tickets booked, it looked like everything was back on track and it was full steam ahead once again.

And then ‘flu struck; and with 50% of the household taking to their beds, I suddenly had to rethink it all. I was reluctant to give up my third year of judging completely and so reached an agreement with my husband in his sick-bed that I would head off on the 6am train as planned, but instead of having some time to myself and staying in London, I would instead return at the end of the day and pick up my nursing duties where they had been left off over 12 hours before. It would mean a long day for me with not much chance to rest and recover, but I knew that the day itself would rejuvenate me as I spent it with the fantastic bunch of fellow judges that have become friends over the last couple of years.

My choice of category this was “store cupboard”, something I hadn’t previously judged and one that I had found quite intriguing in previous years. This category encapsulates a vast selection of products that could be found in your kitchen cupboard (flours and packet mixes), fridges (mayonnaises and sauces) or freezers (cook from frozen goodies). With 49 items to taste, evaluate and score, this is a long day, which contained a lot of laughter thanks to the people I was with. I’ve made no secret that the last 12 months at work have been challenging ones and it proved to be a real reminder of exactly what is important in life and provided a focus on just how lucky I am to have such opportunities away from the 9-5 drudgery of the day-to-day.

There were a lot of products for us to try and some were definitely better than others. I think it fair to also state that some were better received than others, with the occasional one leaving us all scratching our heads as to why exactly they’d been entered into the awards. With a choice of 49 different items to taste during the day, I wanted to bring you the highlights as I saw them and although not all were safe for M, they would all be an ideal addition for G. In no particular order, I loved these:

Orman’s Vegan Easy Egg – a fantastic egg replacement product that produced an omelette that not only tasted just like the real thing, but had a similar texture as well. I hadn’t come across this before, but I absolutely loved it.

Probios Mayorice – a rice-based mayonnaise that was a good alternative for regular egg mayonnaise and, even better, was pretty much M-friendly (allowing for the fact that we have no idea whether he can tolerate mustard or not!).

Thai Green Curry sauce – I can’t remember who this was made by (Co-op maybe?), but it was a delicious and aromatic version of this popular Thai dish. Marketed as gluten-free, but sadly not also dairy-free as the manufacturers had decided to use double cream to thicken the sauce. Despite that fact, I enjoyed the mouthful I had.

Spice Sanctuary’s GF Asafoetida – This is one I’d never heard of, but is a fantastic gently aromatic spice blend that can be used to replace onion and garlic in your cooking. Not an inexpensive option, but you only need a little to flavour your dishes.

I once again had a fab day finding new products and taking some great options away with me to experiment with at home. Judging finishes this week and the results will be announced at the Awards ceremony in a couple of months’ time.