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Eating Disorders Awareness Blog for Eating Disorder Awareness Week 2016

15th February 2016

And here we are again, that time of year where I harp on about Eating Disorders more ferociously than ever. Eating Disorders Awareness week 2016. I'll be honest, my head is swimming. I have so much to say and not quite sure where to start. So, as, ever, I'll start with sharing an experience of mine.

At the age of 10 years old I found myself in a Doctors surgery with my parents in Hull. I was ill and needed treatment. Now, if I'd have walked in there with a broken limb, I'd have been sent off for an x-ray and straight to A & E, if I'd have had suspected meningitis I'd have gone straight to hospital, if I'd have had an ear infection I'd have been given antibiotics...I had none of these ailments...I had the beginning of an eating disorder. I wasn't sure what was happening to me but my mind was plagued with unfamiliar thoughts of sadness, of hate for myself, of distress. My body was slowly losing weight and I was lost. My parents even more so, but they knew this was the start of Anorexia. So when the Doctor weighed me and told me my BMI was healthy and there was nothing to worry about my Mum and Dad were distraught. I was embarrassed. Embarrassed because I wasn't thin enough to have a problem. Ashamed I'd wasted everyone's time, especially after the hours the night before that Mum, Dad and I had sat round our dining table after another meal I didn't want, with them pleading with me to admit there was something wrong. In floods of tears and petrified at what I was saying I eventfully said "I think I'm fat Mum. I can't go to school. I can't think and I'm scared". Even typing this breaks my heart. I'm now sat here in floods of tears to be quite honest because if that Doctor had have turned round and said "Gemma, we need to get you some help" my life could have been so different. I might not have lost those 13 years to anorexia, not have put my family through hell, not have almost died four times. But that's what happened. Luckily I don't look back with regret, I live my life for now and for tomorrow, but this memory hi-lights one of THE most worrying things about services for eating disorder sufferers and young children with mental health issues...the lack of early intervention.

What happened after this, was of course, I lost more weight. The anorexia grew inside me and raged in my head and I became even more poorly.Only when my weight was low enough was I referred to CAMHS, the specialist NHS service for Child and Adolescent Mental Health. I was put on a waiting list. My first assessment would be in 3 months. THREE MONTHS. Imagine if I'd have been to the Doctor and they told me I had a form of cancer or leukaemia and they told my parents "We'll treat her in about 4 months time. Sorry about that." Never would this happen! But there I was waiting, wasting away and my parents in complete and utter distress watching their youngest child slowly slip away from them. And not just that, my siblings, going through hell watching their once bubbly little sister waste away to a shell of whom she once was. I am so blessed to have the Mum and Dad I do and they fought and fought to get me seen sooner, it was them against the world at times it seemed, but that didn't stop them. As I was so ill at the time my memories are sometimes a bit vague, but I remember them receiving a letter pushing back my assessment date AGAIN and all hell breaking lose! I believe that was the start of them forming SEED to be honest. Never would they allow a family to go through what we were again. Eventually the assessment was sped up with the help of our GP (a different one thank goodness, the wonderful Dr Barnes) and I was taken to a children's adolescent unit in Hessle. I've thought long and hard about sharing this, but I feel I must...the night before the new assessment date came through and was brought forward I was in my bed, wrapped in about four layers of clothes, hot water bottles and three duvets by Mum and Dad as I was so low in weight I couldn't keep heat in my body. Mum and Dad, for weeks on end, whilst we waited for 'help', would be on night watch with me. I mean, coming into my room at night and checking I was still breathing. No parent should ever have to do that. Ever. I know now how close to death I was and how they thought they were going to lose me. This tears me apart to think they had to deal with that. Just kills me inside. I guess that's why we fight so hard with SEED and eating disorders awareness. It's memories like that, which stay and mould a way of understanding and thinking that a change must be made. Anyway, this night I laid sobbing silently into my pillow (now aged 11) and felt the belt on my dressing gown round my bones. I pulled it so hard around my stomach I almost passed out. I then took the belt, unravelled it from the hoops and held it to my face...like in a trance I started to wrap it around my neck. Then in walked Mum and Dad. The light was off and they didn't see what I was about to do but that was the first time they saved my life. I flung my arms around them and sobbed. My point in telling this story is that I was dying and I was being told to wait for help. And even in 2016, reports are still showing that waiting times for mental health sufferers, especially the young, are as much as 6 months, that in the last 5 years 85million pounds have been cut from Children's mental health services. Is this where we're at? Those in desperate need of help have to get worse before they get better? Have to prove they are worthy enough of being so far down towards the end that they'll be heard, let alone seen? That a sufferers urgency for help is determined by a useless and nonsensical calculator which indicates a person's BMI? What an absolute travesty and farce. It boils my blood it really does. EARLY INTERVENTION IS KEY. And not just early intervention, but the RIGHT intervention.

I was put on bed rest and told if I didn't drink water I would be dead in 24 hours when I was finally deemed ill enough to be admitted to saidpsychiatric adolescent unit. And then what happened over the next 7 months was that I wasbasically force fed. No addressing of the issues in my mind and thoughts, which are the reason behind anyone developing an eating disorder. I've said it a million times over and will continue to do so. FOOD IS THE SYMPTOM NOT THE CAUSE. And an Eating Disorder is a MENTAL HEALTH ILLNESSand NOT about vanity.

In the end my parents took me out of the adolescent unit. Once I was off bed rest and had to interact in the unit with other patients (not eating disorder sufferers, children and teens with all kinds of with mental health problems) I felt unsafe and that the environment wasn't helping. I had stereo systems thrown at my head, watched young people screaming and fighting before being injected with sedation, I had a girl sit on my bed at night, with whom I shared a room, cutting herself in front of me and telling me in vivid detail about how she was raped. Mum and Dad, alone again in support, had to take me out. Of course I wasn't better, but what could they do? The weight was back on me but we knew it was a matter of time before the anorexia crept back as the reasons behind the anorexia hadn't been addressed let alone dealt with. Over the next ten years I was on the treadmill of admissions, waiting lists andreferrals for various specialist eating disorder units. Having to drive miles to find any form of residential care because there were no beds in any units near me in Hull, in fact there was hardly a service back then. Fortunately we now have one, in most part down to the amazing work of SEED alongside the public sector in Hull. Because The Day Service is just for people with Hull GP’s the East Riding sufferers are faced with a postcode lottery system, this is heart breaking for SEED as they strive to bridge the gaps for desperate sufferers and their loved ones!

But this isn't the case everywhere. Again, why is this? Children being separated from their family to get help? Often the other side of the country. Is that really what is for the good of treatment? Not just children either, older sufferers. The current conservative government, after a task force was commissioned to look into Young People's Mental health predominantly, reported dire figures in a huge rise in referrals, lack of beds, and longer waiting times than ever, pledged to put in a billion pound to make significant changes by 2020...the money is there but it's literally dripping down and local authorities are unable to cope with the rising demands of sufferers. This scares me, when early intervention is key, how can this happen when CAMHS don't yet have the funds to implement this change. We know it's coming, but when? We're literally just talking the talk because we can't walk it properly yet. CAMHS do an amazing job but they can only focus on high risk cases, meaning those with less severe mental health issues and eating disorders are made to wait, purely because the demand is so high and they have to prioritise. Prioritise a person's life. This is shocking. CAMHS workers must feel they are banging their head against a brick wall at times despite working so hard, they need support that can then filter down and the money can be distributed to opening more specialist units, to having more beds desperately needed for inpatients, for supplying more help through therapy, CBT and counselling. When early intervention is missed, the problems grow, the individual becomes more unwell, the physical and mental suffering becomes harder to treat, the numbers of older sufferers increase, the money needed to help these cases depletes, the demand for care and treatment is intensified because the sufferer has suffered longer, making it a longer recovery process...you see where I'm going with this?

I'm harping on, forgive me, but we must make a change. Even introducing therapists and councillors onsite in schools. So kids have someone to talk to sooner. So that a teacher concerned can approach the family of the pupil and suggest they see said councillor...early on. The biggest change we need to happen is waiting times of referrals. I can't do anything, but what I can do is talk and open debate. I guess that's what this blog is about really. I know many whom have read my blogs previously have been on a journey with me and my story, so I just wanted to try and be a bit brave and give a voice to the future need and not my past.

My biggest message is this...to you the young girl, boy, older woman or man suffering with an eating disorder...RECOVERY IS POSSIBLE. I'm living proof, but the first step has to come from you and the sooner you find that little bit of strength I'm urging you to find in being honest, the better. Don't suffer in silence I beg of you. Pick up the phone to SEED or contact us through the website, tell a friend and ask if they will help you do it. Talk to a family member first if easier, or simply talk to us. I know it's hard, I know it feels like agony at times but once you make that first small step the strides become wider. It took me 13 years to get well, but I know that was because I didn't get the help I needed straight away. We at SEED are what can make a difference in some small way...by knowing you are not alone. The same goes for carers, Mums, Dad, best friends, siblings, you need support too. And we are here for that. We know firsthand the fight, the concerns, the distress...Mum, Dad and I. And we got through it, by God we did. I know one day we'll write a book sharing in depth our journey, but in the mean time I'll keep reaching out in any way I can.

It's funny how Valentine's day is round the corner and I'm about to ask you to show the biggest sign of love you can...to yourself. Be kind to you and do something that will change your life forever if you are suffering, speak out. Life is ever changing, this is my first Valentine's Day in two years, being a single lady...and I love it! Why? Because I have fought to be where I am today, I have fought to have my life and health and I am blessed for it. I love me, it's taken me almost 32 years to say that. The journey is a long one, the path doesn't always bring the destination we thought, trust me, 2015 veered me right off. But then I found another path. And it's a good one. I will not stop being Patron of SEED, you're kind of stuck with me because I want you to know...we got this. I promise you.
We got this.

Love Gem x