Zoe

Ellie has been through more than her fair share of hard times, health wise, for a child growing up in the UK. 

When Ellie was about 2/3 (& suffering an agonising stomach problem that would last for 3 years) & Jo, my older daughter, was 6/7, we moved to a different area of Brighton & Jo started her 1st year of proper school (she'd only been in reception until that point) at a new school. She settled easily, made a best friend who has stayed in her class & been with her all through infants, juniors & secondary (alas, he is off to a different college now so they will be finally separated, though I don't doubt they will remain close friends despite this).

So in the mornings, I would get Jo ready for school, I would get Ellie ready to go out with me to take Jo to school. The walk was up a steep hill for the first 10 minutes, with a kid in a pushchair & a young un hanging off of it or me. Some mornings, when I opened my front door to leave, I'd see another mum walking past, kid in a buggy, at least 2 or 3 others hanging off her. I became competitive with this inimitable stranger. If she could make it to school by 08:55 with more kids than one in tow then I would make it there faster! More often than not I didn't, staring at her arse rocket away into the distance as I cursed her physical fitness whilst I huffed & puffed in her wake.

When Ellie reached playgroup age I enrolled her in the one around the corner. She quickly bonded with one of the other girls there, her name was Zoe. They talked of each other & wanted to go for play dates at each others houses. Soon after that I was approached by a wonderfully warm & friendly woman who was Zoe's mum, the same woman whose backside I'd raced up that hill to school so many times. Her name was Julie, since then she has been one of my closest friends.

Over the years, Ellie & Zoe built a friendship that until now I never realised was so rock solid. They went to the same school at first, they were in the same class in Reception & Year 1. But then Zoe moved away & had to go to another school nearer to where she lived. I assumed they would gradually drift apart as they were only 6 or 7 at that time. 

Today, 1 year & 3 months into Elise's illness, all other "friends" long since dissipated, lost interest, embarrassed & awkward about Ellie's disability, today, I sat & watched Ellie & Zoe sitting on the veranda, chatting & giggling, playing games, whispering hushed secrets, exchanging knowing glances. They are 12 now. And today, I saw Ellie again. Ellie before she became unwEllie, & I am so, so grateful that we have Zoe in our lives. Ellie is an amazing kid, after all she's been through she's still kind & considerate & thoughtful & incredibly empathetic. And so is Zoe. She gives both me & Ellie the strength to know how the love of others can keep us going.

Zoe, we love you. x

Epic benefits system fail.

Up until Ellie became really unwell I used to work in the Imaging department of our local hospital. I'd started out there as an HCA (Healthcare Assistant), but when a position as a Trainee Assistant Practitioner in Plain Film and Fluoroscopy came up (which basicly meant I'd get to learn to  how to take X-rays) I applied for and was offered the job. I started in September 2011, it required me to attend university up in London one day a week, and then train on the job in the hospital the other four working days. Even though I spend most of the week in work, taking X-rays, I was still considered a full-time student, as most of my education took place in the hospital setting. It was a 2 year course and then all being well I would be a qualified X-ray Assistant Practitioner.

Ellie became ill in May 2011. She went into hospital in June and I missed an important exam, but managed to resit that later in the year and muddled along until September looking after a sick child, running a household and doing a full-time job and a shed load of uni work. I passed the first year of the course but it was becoming pretty obvious that working, studying and looking after Ellie was untenable, and the decision was made between myself and my employers that the only realistic option left open to me was to defer uni for a year and start working part-time. After a month or two of this I was signed off sick with emotional exhaustion and eventually I had to admit defeat, Ellie was not getting better and there was no other option than for me to be her full-time carer. Work are keeping my job open for me, I have up to five years to return to my post, and the university still class me as a full-time student and they'll accomodate me to complete the course unless I officially withdraw from it, but that would be burning my bridges when it comes to my job. As long as I stay enrolled as a student I have the chance to do the final year of the course and complete my training and gain employment as an Assistant Practitioner at the hospital.

So this is where our benefits system kicks in yeah? Ellie has been registered disabled at the highest componants of both care and mobilty, the next step for me, as her carer, is to apply for Carer's Allowance, once I am awarded this (a pitiful amount but the label of "carer" is required so....) I can claim Income Support and Housing Benefit. Except I've had my application for Carer's Allowance turned down, twice. The reason for this is because I'm still officially a full-time student, even though I don't attend university and unfortunately there is a good chance I may never be able to finish the course, but while there is still a chance I may finish, I'm not happy to give that up.

So what are my options? If you aren't working but you don't qualify for Income Support then you can apply for Jobseeker's Allowance. But hang on, I already have a job, It's being kept open for me in the hope that one day this nightmare will all be over and I shall return! Rolling up to the Job Centre with a kid in a wheelchair once a fortnight to show proof that I've been actively looking for work while I'm still formally employed by the NHS, well, I doubt that's going to be an acceptible compromise for either myself or the DWP. So what is the only option left open to me?

Basically, in order to claim the benefits I need for us to live off of while I am unable to work, I must officially quit my university course and in doing so I will also lose my job. Maybe in six months, or a year, or perhaps even two or more from now, if (and it's a big if, but I'm keeping my fingers like a Liberal Democrat voter at the last election - double-crossed) Ellie is well enough for me to return to work again, it won't be to the job that should've been waiting for me, the job I'd already dedicated a year of hard study towards, a year of study the local government had funded, and the beginning of my career in the NHS.

So, what with the unemployment figures being as they are, the chances are that instead of having a job, univeristy course and the foundations of a career in Radiography to return to when my daughter is either well again or old enough to manage her own illness, I will probably just be signing off of Income Support and onto Jobseeker's Allowance. It all makes such great sense....

The battle may be won, but when did this become a war?

So we were supposed to be readmitted to our local hospital today, but as luck would have it they had no bed space. Waited all day for a phonecall from her consultant, and when it came it was bittersweet. He listened to what I had to tell him about what had been said at The Royal London and he sounded tired, resigned to the fact that we now had the full force of a group of specialists behind us, and that he would reluctantly have to allow them input in her care. At least that's how I read his response from his voice alone, although I may have been totally wrong.

While talking on the phone to him I realised how much of our communication is non-verbal. When we discuss Ellie's care we all speak with our bodies as much as our voices. The signalling and posturing between us has become somewhat excessive. The telephone conversation took all that away and made communication even harder, you have to concentrate on the words you use so much more intensely, but it made me realise how badly we'd all been behaving in terms of our body language.

Afterwards I just felt sad. I should've been relieved that the confrontation and conflicting ideas between us about Ellie's care, that had been so apparent all last week, had been resolved in a way that was more to our satisfaction than his. But it was a hollow victory, why did this battle even need to take place, surely we all want the same thing? As much as I'm angry with this doctor for not listening to advice from others, others who may be able to provide important input as to how to expedite Ellie's passage to better health, I don't think he wants anything more than to make Ellie better, like the rest of us. The only thing we're really disagreeing on is how to make that happen. I just wish we could all pull together, share knowledge with one another, listen, discuss, keep open-minds, learn from each other without all the conflict.

All this has changed me so much, on the positive side I've become a person that is so much stronger, more self-assured and more confident than I used to be. But the down side is I now see myself as a lot less patient, less objective, and quite often, less pleasant.

Henceforth, into battle, we go again....

Q: When is healthcare not healthcare.

A: When it's a constant fight to get appropriate treatment.

When acute healthcare is required from our NHS system it's pretty top-notch, and here I only speak from my own experiences. If you have a simple and obvious problem, the wheels turn quickly - here is a problem, there are the immediate and obvious solutions. For instance, when I had appendicitis my symptoms were straightforward classic ones, a few hours from the sudden onset of extreme, severe stomach pain and projectile vomiting, a bit of prodding and poking around my lower right abdomen, and my condition was diagnosed and the solution, an appendicectomy, decided upon. I had a reasonably straighforward and common surgical procedure, but none-the-less one that probably saved my life, the next day and was home within a week. Simple.

Chronic illness is an entirely different matter. What we know now  medically compared to 10 years ago is, well, lots more. 10 years from now we'll now lots more still. The body is incredibly complex, and the truth is that however much we already do know, and that's a lot, they is waaaaayyyyy more to find out, and a plenty we may never know. But the medical profession keeps trying, it keeps evolving and learning, it's moving forward. There are more specialists, more studies and research being performed, and more data collated to gather the information required for us to get a clearer picture of what is going on is the bodies of people who are suffering from chronic illness.

I am struggling at the moment to get our consultant at the local hospital here in Brighton to open his mind to the posibility that he might benefit from the input of the doctors that have seen her in the Royal London Hospital's Centre for Digestive Diseases. He works in an acute hospital and had little   understanding of the condition that the Royal London doctors say that Ellie is suffering from, and has been dismissive of their specialist knowledge to a degree that to me (although I agree I am by no means an impartial observer on this) seems unprofessional.

When your child becomes ill you expect the hospital and it's staff who are caring for them to be totally focused on doing what is best for that child, open to help and knowledge shared with them by others that may provide a more positive outcome for that child. What you do not expect is decisions to be made by your child's consultant with refusal to accept, or even contemplate, that their diagnosis may (or may not) be entirely accurate without listening to the opinions of others that may have had more experience with children with unusual or rarely seen conditions such as the one Ellie may (or may not) have.

So we find ourselves in conflict with Ellie's consultant here in Brighton. If this whole, horrendous, heart-breaking experience wasn't enough - seeing our daughter suffer constant pain, deteriorating physically and mentally, suffering bouts of dangerous malnutrician, having to bear the constant insinuation that it's all in her head when she desperately wants nothing more to be well again - we have to fight with her doctor to persuade him to consider allowing the input of another department, a specialist one from another hospital, to help us all determine the most appropriate treatment for her.

I don't know what the future holds for Ellie, or the many, many children out there going through similar experiences, but I hope that sceptisism, arrogance and pride amongst those less open to the sharing of knowledge between healthcare staff doesn't leave the NHS as chronically ill as my child has become.

Oh, and one last thing....

I failed to mention the overwhelming sense of fear suffered by Ellie in the lead up to the appointment, the last couple of days have seen her behaving totally out of character, tears and tantrums. She's never been before, and even so far through all this illness, been that sort of child. The anxiety levels we were all experiencing were through the roof.

It's no wonder she's become hospital phobic, our first trip to A&E lasted 13 hours, most of those spent waiting around and repeating her story to various doctors and nurses, and a good couple spent puncturing veins in a desperate attempt to retrieve blood samples that were not forthcoming from her sunken, dehydrated veins. She was discharged to return for more tests the following week. When she was admitted she ended up being sedated and pinned down by myself and 2 nurses as she fought to stop the nasogastric tube being inserted into her stomach as she retched and screamed and begged us to stop. And the nausea, pain and humiliation of the experience did not end there. She left a week later in only a little less pain and a lot more traumatised.

So it's no surprise that she begged and pleaded not to go today, she said she knew what would happen, we'd have a long boring wait and then she be prodded and poked and asked the same questions. And she was right, that was exactly what happened. But I saw the relief on her face on the train home that another trip to see medical professionals was over, and without it escalating out of her control and into a more unpleasant experience than she is already suffering having to live her life as it is right now.

How to have a positive, negative experience.

As a lot of you are aware, today I took my 11 year old daughter Ellie for an appointment at Great Ormond Street Hospital. She'd been referred there by our local health authority here in Brighton because since May last year she has suffered from chronic stomach pain. Extensive tests she had here in Brighton when she started suffering revealed no obvious pathology, her consultant rather tactlessly implied that it was a "psychologically driven" pain, i.e. she was either choosing not to let go of the feelings of pain that had come about after the initial virus that she and I suffered that triggered the illness, or that she was in fact just exaggerating or lying about being in pain at all. He offered us few options for care, we took his advice though and after a couple of months we saw no improvement.

We got a second opinion, we saw a Paediatric Gastroenterologist, a Professor no less, who had far more experience in treating children with the same pattern of illness. He suggested her problem lay within the nerves of her stomach lining and her problems were further being aggravated by poor posture causing pain in her lower thoracic spine by her hunching to protect her area of pain, he referred her to a specialist physiotherapist who was wonderful but a) we had to pay for ourselves as she worked outside of our health trust, and b) we only got to see once because she was so far away, although Ellie's care has continued privately , under her guidance, by a former colleague of hers here in Brighton who is also going above and beyond to try see that Ellie gets the care she needs.

Anyway, most of you know all this, and to cut a verrrrrrry much longer story a heck of a lot shorter, today we went to Great Ormond Street. So how did it go is what everyone's wondering? Well, i'm not sure to be honest, it's taking me a while to work out. She had her weight and height taken when we arrived and then we waited two hours to be seen, when we were it was by a consultant, a nurse, a child psychologist and some other guy who i've know idea who he was or why he was there. They were sympathetic, understanding, they didn't imply that Ellie was making it up or relishing her situation in any way, but they didn't provide us with any more support mechanisms to help us cope with the deteriorating child that sat before us.

The biggest problem that Ellie has right now is that the constant pain in her stomach has gradually stopped her eating, since the illness began, the foods she deemed "safe" (i.e. they don't hurt to eat or don't worsen the pain too much) have got less and less. She doesn't have any issues with her weight, she is not concerned by her calorie intake, she just associates food with pain so at the moment she is surviving on 2 or 3 Fortisip (300 calorie supplementary drinks) each day, and I can only persuade her to (reluctantly) force those down so that she can have the potentially stomach lining destroying painkillers that are the only thing that brings her any relief. Little was talked about in regard to this problem other than that she should be having her height and weight taken by medical professionals at least once a month and not even that is happening at the moment. So I am worried, worried that only we, as her close family, can see her deterioration, and it won't been seen or taken seriously until the situation has become critical, and by then it might be too late. I've tried to get her to eat, it's terribly upsetting and frustrating, i've offered her as little or as much of anything edible she may desire, but the pleasure of food has been completely destroyed for her by the demon pain pay-off that follows after eating.

No helpful suggestions (or even unhelpful ones for that matter) were offered about her inability to sleep because of the pain either. It was made clear that she has been referred to, and is now a patient of the pain clinic, and they do not test for pathologies or help with sleeping problems or food disorders.

So on the positive side, we now have the support of a first-class pain management centre that will try and help us to help Ellie at least learn how to best manage and cope with her pain, if not get rid of it altogether. Also, they intend to give the people here in Brighton who should be monitoring her sleep and weight problems a kick up the backside to make sure she is kept a closer eye on.

On the negative side the prognosis is still a complete mystery to us. Will the pain go on another month, a year, a lifetime? They told us the things we should be doing to try and improve her chances of conquering the pain and turning her situation around, but I already knew all these things they were telling me, I had already gone down that road, enforcing routines and regimes, only to see a marked deterioration in her pain levels. I tried all that but I can't break this vicious circle now it's in full swing. It hurts so she doesn't eat, she doesn't eat so she gets weak, she's weak so she can hardly walk, she can't go out so she gets depressed, she gets depressed so she gets upset, she gets upset so her pain worsens... I'm trying, i'm really trying to stop her spiralling but i'm obviously not doing very well at it but things are only going downhill.

So on reflection, after today, I think this is how I feel: I'm glad she's been referred to the pain clinic, but i'm disappointed that they will not be able to help us with what have become more urgent issues that have to be tackled imminently for the sake of Ellie's health. And I feel sad, because I think deep down I hoped there would be an easy answer, but then i think deep down I already knew there wasn't one.

Little Broken Things

Some of my Twitter pals may be wondering why I've not been around very much recently, the truth is I've been struggling a bit and my usual jovial puntastic nonsense has been severely lacking.

A few days before Christmas I took my car to the garage, the back brakes had started to squeal and I knew this wasn't a healthy sign that all was well with them. I gave them my mobile number and wondered into town. After a while the garage rang to say my car needed over 400 squids worth of work doing to it. I cried and cried all the way back to the garage where I collected my car in the hope of finding a better deal elsewhere. I could just about afford to get the work done using the last of my savings, I'd had a lot more of which this time last year.

Anyway, it wasn't the thought of eating away at my last lump of available bank balance that upset me, that was there for such eventualities as this, it was that so much of that money had gone to supporting the family while I am unable to work because Ellie continues to be so ill. Also, a lot of that money was spent on private treatment for her in the desperate hope that something might helps us make progress, and they were the only things that seemed (if only very slightly) to help improve her quality of life at all.

That morning, when she woke, I had hugged her, as I do many times a day, every day. But she wasn't wearing her usual layers of clothing, just a nightdress, and through that one flimsy piece of material I could feel all her rib bones protruding down her back, and I felt over-whelmed with a rush of fear, a panic that no matter how the doctors had reassured us that although whatever was causing her pain couldn't possibly be life-threatening, her intense fear of food she had developed could be.

The point is that the reason why I was really crying was not because the cost of the car repairs were far higher than anticipated, or that there would be no savings left for the next big bill that would inevitably come at some point and bite me on the behind, it was just the sudden acceptance of the horrifying reality that might unfold if things didn't turn themselves around.

One morning in August, shortly before Ellie was due to start at secondary school, I had an intensely vivid dream. Ellie was dressed in the new uniform we had bought her for her move up to secondary school and she was leaping up on the back of the sofa in the manner she always used to that drove me crazy, she was a bouncing ball of energy. I woke up and rushed to the bathroom, locked the door, and sobbed. She'd been ill for so long i'd forgotten about the girl she used to be, and I realised I missed her so much, and felt for sad for her, how her life had become. That day was a really memorable low point for me, as was the garage day.

So truth be told I ain't feeling so upbeat, but I'm holding out for the Great Ormond Street Hospital appointment at the end of the month. Fingers crossed that helps us turn that corner.

Oh, and thank you and so much love to all who've been supportive to me, it means more than words can express.

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