A Special Announcement...

My commitment and passion to making a change in the way that mental health is viewed and dealt with in the UK has seen me embark on some exciting projects. My blog, being a guest speaker, attending radio interviews, becoming a columnist for The Yorkshire Times and #ThePressurePlate campaign; they have all stemmed from a desire to be a voice of honesty about my suffering, but I hope that my next venture will have the most impact to date.

I have been invited to attend a meeting in London on 8^th June 2016 to be a member of CentreForum's Children and Young People's Mental Health Commission's Youth Reference Group. CentreForum is ‘an independent think tank that develops evidence-based research to influence both national debate and policy making.’ This charitable organisation is devoted to raising the profile of topics and issues within the UK that are somewhat lacking in priority when it comes to government attention and in many cases, funding. I will be attending a meeting that specifically focuses on the current state of mental health services, and consequently, I will have the opportunity to share my opinions based on my personal experiences. Although not entirely sure on the format of the event, I am expecting it to be a very informative, thought provoking and passion driven engagement.

Reading the April 2016 report on ‘Children and Young People’s Mental Health: State of the Nation’, I am both horrified and accepting of some of the information accumulated from their in depth research and surveys. Horrified in terms of the evidence-based facts regarding referrals, waiting times and treatment solutions, yet accepting due to experiencing some of these difficulties first hand.

This is an opportunity that I feel will not come around often, and I am very thankful to have been accepted to voice my experiences and opinions about mental health services in this country. I hope that it will strengthen the efforts of this organisation, and make a bigger impression on the government’s need to focus on this area of the health sector.

I look forward to following up this post with what I hope to be, a very positive account of my involvement at the meeting!

For those that are interested, here is the link to CentreForum’s ‘Children and Young People’s Mental Health: State of the Nation’ report:

http://centreforum.org/publications/children-young-peoples-mental-health-state-nation/

One Social Event at a Time...

“Jess, do you fancy going out one time?” Friends used to ask, and I would start scanning my prepared list of excuses in my mind as to why I could not go. College work, family visits, tiredness, the list was never ending. With time, the invitations stopped coming and I started to feel lonely, isolated and unwanted. Yet, I couldn’t make the link between my refusals and the lack of offers. The anorexic behaviours started to become heightened. The fear of eating out increased, to the point where I would hardly leave the house apart from the need to go to work, just incase this scenario potentially occurred. I convinced myself that I was completely fine, and that I just enjoyed being independent and being at home. Again, I could not make the link between my illness and my isolation. To be honest,there was actually no part of me that really wanted to see people up until my hospital admission. I was even afraid to go shopping incase I saw somebody that I knew. I was completely ashamed of what I looked like and who I had become. I was solely dependent on my parents for somebody to talk to, as I had managed to close off the majority of links to all of my other friends. I had nothing to talk about with anybody because I wasn’t doing anything. I no longer had any hobbies, ambitions or motivations, so my conversation topics were very limited as all I really thought about was food, and I did not want to talk about that. Even speaking to family members became a challenge as nobody knew what to say, and looking back now I feel the phrase ‘walking on eggshells’ would be the best way to describe how people felt whilst talking to me. Just the mention of one word could have made me flip, and it didn’t have to be anything specific, depending on my frame of mind, something completely insignificant could have made me cry or walk away.

Nevertheless, that is all in the past. One of my New Years Resolutions was to say ‘yes’ to as many social events as I felt comfortable with, and so far, I am pleased to say that this has been a success! I firstly started to go back to ‘Monday Dinner’ at Gran and Grandad’s, with both Danny and my cousin Alice. This has been a weekly event between the five of us for as long as I can remember, however, for the past year, they really were not the same. I would arrive at the house for exactly 5 o’clock, when I knew the food was going to be on the table, and I would leave as soon as I had finished the main meal, completely avoiding pudding with my most used excuse of having college work. I would hardly speak when I was there, as I would be so focused on making sure my plate looked ‘normal’ in terms of portion sizing and what I was actually adding to it, trying to not to draw attention to the significant restrictions I was making week after week. Once this aspect of the meal was over, I would then engage in my cutting behaviours, which again I tried to do discretely. Obviously, now that I can look back, I can only imagine that this was the most baffling routine to witness, but in my head it made so much sense to carry it out. But I no longer engage in those damaging behaviours, and so that first ‘Monday Dinner’ was an absolute joy. I challenged the portioning knowledge that I have gained throughout my time in treatment, as I created my meal from the food laid out on the table. Then I ate my meal, with the ability to look up and participate in the conversation, without being completely absorbed in the thoughts of what I was eating and how I was eating it. Of course, as the pudding came out I started to doubt why I had accepted the invitation, but then I remembered my meal plan, my increased activity levels and the fact that I was utterly enjoying the company of my amazing family. I appreciate the time I can spend with those closest to me so much more now, as I think about all of those seconds, minutes and hours I missed out on before. I would never have been able to forgive myself if something had have happened to one of my family members during the time that I was completely drawn into my illness. So this has been a huge reminder as to why I now feel as though it is all the more important to accept these offers of social events; just because I am becoming increasingly aware of just how much my eating disorder has taken away from me in the past.

Reestablishing happy moments with my family was an absolute priority in my on going recovery. Now that I have managed to achieve and maintain this aim, I decided to tackle the next item on my agenda- reconnecting with friends. I have to say that I am incredibly fortunate in the fact that my friends never gave up on me. Even though I continued to dismiss their offers of meeting, they were still persistent in their attempts to maintain contact. Only now that I am better, can I really appreciate these wonderful people for their commitment to our friendship, and again I feel compelled to sustain my health to be able to make up for lost time. In order to do this I have enjoyed regular trips to the cinema and meals out, visiting ice hockey matches, and my most challenging adventure to date- an overnight stay in Newcastle. Travelling on the train to meet up with a friend that I hadn’t seen in over four years, I was a complete mix of emotions. Not only was I battling with the thoughts of a complete mix up of routines in terms of eating, but I was also wondering if we were even going to get on. Four years is a long time, and as I know, a lot can happen in that amount of time. Fortunately, it felt as though we had never even been apart. I think that is a sign of the truest friendships, when you can just pick up exactly where you left off. Reminiscing about the past and conversing about our futures, it was so nice to be able to talk about something other than my recent episodes. We went for a night out in the town, and I thoroughly enjoyed myself dancing, laughing and having fun. I did begin to find it difficult being the only sober one, as I was incredibly observant of the surroundings and consequently became quite anxious in situations that may not have been an issue, had I have been more relaxed. However, my friend being as supportive as she is, agreed that it was time we headed home. Now this next part of my evening may seem completely insignificant to most people, but to me this was a massive step, to the point where I even text my mum to tell her how proud I was of myself. It was 3:00am and I was hungry, so I decided to get myself a massive bowl of cereal. I know there will be people reading this thinking “cereal, really? I would have been more impressed if you had have said a takeaway.” But think about this situation with the mindset of an eating disorder sufferer. Firstly, I recognised hunger and acted upon it. Secondly, I did not have the equipment to be able to measure out precisely how much cereal and milk I was about to consume, in accordance to the serving suggestions displayed on the packaging. Finally, at no point in my rigid meal plan does a snack at 3:00am fit into the normal routine. My eating disorder had laid out three major hurdles in front of me, and I managed to overcome every single one of them. Now I know that I have strength to be able to tackle many more of these difficulties that engaging in social events can crop up unexpectedly.  I have so much more confidence in myself and my capabilities in achieving full recovery, and I know that with every step I take in fighting all that my eating disorder wants me to do, it will only make it quieter, until it becomes the least significant part of my life. I am looking forward to the year ahead and what it has to offer, and I know that with the ongoing support from my incredible family and friends, that this will only make recovery easier.

One Label at a Time...

 Numbers, colours, percentages; nutritional information labels on food packaging are the fundamental reason behind my distress when making decisions about food. Due to the nature of the App that I had previously downloaded, and my concerns about sugar stemming from my dental braces, label checking has been a consistent behaviour for the past few years of my life. Avoiding products with a red section on the nutritional banner, or with anything over a certain percentage, my choices around the foods I was ‘allowed’ to eat was dwindling rapidly.

With very limited knowledge about what these labels actually mean, my eating disorder manipulated the situation, and made me develop my own ideas. During my therapy, and even to this day, I still find it very hard to comprehend what professionals are telling me about the reasoning behind these sources of information, because I have spent so long convincing myself that my theories are true. Minimal; that was the aim. To find products that were the lowest possible percentage, and if anything were highlighted as red or amber, it was an absolute no. Of course, this limited my diet dramatically, and my behaviours became very extreme, to the point where I was checking the sugar levels of fruit.

Control was an absolute necessity. I attended every food shopping trip, even if it did cause me an incredible amount of distress and for my Mum as well. I cooked every meal, obliging to the exact proportions of the recommended serving sizes, weighing products when dry, and then weighing them when they were cooked. What I failed to recognise, was that as much as I was demanding the control over a situation, I see now that my eating disorder was having all the control over me. I was fighting a losing battle, but all the time I was trying to satisfy the expectations of my anorexia- even at the expense of my health, and life.

Eating out became a distant memory, unless I conducted thorough research into the exact nutritional content of a meal. It sounds ludicrous, I know, because every meal in every restaurant will be prepared differently dependent on the chef, so it will never meet the exact criteria specified on the website. But did I think of that? No, of course not. If I did attend a meal out, or my parents had cooked a meal, and I was unsure about what I had consumed, this brought on other extreme behaviours.

Over exercising. In the early stages of my eating disorder I would go on the treadmill or exercise bike for considerable lengths of time to burn off the calories that I presumed I had ingested, or what my App told me I had. This was exhausting. I remember one time, after eating a favourite pudding of mine; I got back from the eatery at 9:30pm and didn’t come off the treadmill until 11:30pm. Mum continually questioned what I was doing throughout that time, but I told her I was watching a film, so I wanted to watch it all. I could tell that she was concerned, but I convinced her that everything was ok, which I thought it was. This type of behaviour became less extreme as I became weaker, but I was still trying to do exercise discretely, regardless of the incapability’s of my body.

So how do I feel about the government’s proposal of introducing even more labels onto food packaging, detailing how much exercise an individual needs to do in order to ‘burn off’ the calories from the product they are about to consume? To say I was absolutely furious would be a complete understatement. After several months of therapy and re-education about the foods I need to be consuming, and how to maintain normal eating, I was livid when I heard the news. If numbers, colours and percentages didn’t cause me enough frustration, to find out that there may be additional labels that will feed into the negative thoughts in my head, I do not know how I will cope with this. At home I still have to remove packaging on certain products to make my decision making process easier, otherwise I can be stood staring at the products in a cupboard for a considerable amount of time. This was a similar scenario when in a supermarket, but I have found foods that I repeatedly select now, based on my knowledge from hospital and Evolve. However, I now worry that the introduction of the new information, may throw me into turmoil about the foods I have worked tirelessly to build a healthy relationship with. I also fear that I will now resent selecting new foods to try, as this is already an up hill battle with the current displayed information.

I understand that there are individuals in this country that will benefit dramatically from the amount of exercise needed information on packaging; and I do not want anybody to think that I am being selfish. I am aware of the trends in obesity and health concerns associated with the condition, but I am also aware of the trends regarding disordered eating. The current statistics show that the number of eating disorder cases, and support needed for those suffering, are consistently increasing. Surely, instead of spending government time and money on introducing these new labels, do we not think it would be better used in the education and awareness of healthy eating?

Personally, I know that this is going to add to the already distressing situation I find myself in every single day, and I worry that it is going to cause more and more people to fall into the trap that I found myself in.

Charities to Fill the Gaps Left by the NHS- a Guest Post by Marg Oaten MBE

As Secretary and Co-founder of SEED Eating Disorder Support Services I am writing to highlight the gaps in services for those suffering from Eating Disorders within Hull and East Riding.

As a voluntary organisation we work in partnership with the Hull Evolve Eating Disorder Day Service as part of the City Health Care Partnership.

My heart goes out to those people living in the East Riding within the adult age groups of 18 plus.  All too often they leave CAMHS Services to be discharged at 18 with no network of support whatsoever.  The referral pathways within East Riding do not recognise Eating Disorders at Community Level and they are often put on waiting lists sometime as long as 18 months to 2 years for psychology within Specialist Services – often never receiving that appointment and often presenting in ‘crisis’ whilst they wait.  They may need in-patient services within a hospital ward or be sectioned within a psychiatric unit.

If you live in Hull or the East Riding and have a Hull GP then you are able to access Evolve Hull Eating Disorder Day Services, offering a range of services including meal planning and supported meals, face to face therapy and dietetic services and they have a clinical nurse in post to monitor medical risk.   Sadly if you live in Hull or East Riding and don’t have a Hull GP then this is not possible.

As a Voluntary Charity we have many years’ experience of supporting both sufferers and carers of this devastating illness; an illness that effects anyone who if part of their life.  Carers who are desperate make contact, as they see their Son or Daughter ‘lost’ to an eating disorder. It has the highest mortality rate of any other mental health illness with a staggering 20% of people dying every year through the illness or through suicide.  

Partnership working is the key with authorities coming together with the voluntary sector.

To think outside the box at times and recognise that there are exceptional organisations who give their time voluntarily to support others may be the way forward, and for them to be part of that ‘network’ of support.

Early intervention is the key and close monitoring of both the physical and emotional needs vital.

Let’s work together to make that possible!

Marg Oaten MBE

Secretary and Co-Founder

SEED Eating Disorder Support Services.

I wanted to end this post with an expression of thanks to Marg for writing this piece, and for the services that SEED provide.

I have experienced firsthand the enormous amount of help that SEED can deliver for those struggling, whilst waiting for help from the NHS. As many of you will know, I had waited 6 months for specific eating disorder help before being hospitalised in July. When discharged from this setting, I was told that I would have a strong team of support within the community, however, after waiting for another 6 months, I was still left with no psychological support. Last month, I experienced a major blip in my recovery, which highlighted how desperately I needed the psychological help, and with no appointments arranged with the NHS, my parents sought help from SEED.

Within the space of a few days, Marg had put a referral through for a specialist psychologist, and an appointment was arranged for me to meet with her the following week. I was exceptionally grateful, and after meeting with the professional at a very convenient time in the evening, I was thrilled with the rapport and understanding that I had built within one appointment. We discussed the areas that needed to be addressed, and established what methods work best for me. I left the appointment feeling very positive about my recovery, and I cannot thank SEED enough for giving me that extra boost and confidence in the recovery process.

Ironically, a few days after my private appointment, I received a letter from my community team. The letter stated that 4 appointments at 10:00am on consecutive Mondays had been arranged for my initial assessment with a trainee psychologist. I could not believe that after waiting for so long and arranging private help, I finally received the news I had been so desperate for.

Now, a few of you reading this may not agree with what I did next, but it was a decision that I did not take lightly I can assure you; I cancelled the community appointments. Firstly, these appointments were for an initial assessment, meaning that I could have attended all 4 and then been told that I did not qualify for further treatment. Secondly, the appointments were at very inconvenient times, as I should have been at work- this would have all added to the anxiety that I feel about letting people down, in this case my colleagues- even though I know how supportive they are! Thirdly, I had already established with the private psychologist exactly what I feel I should work on, and felt that tailor-made package was something I would not have been able to achieve with a community psychologist. Finally, I did not want to enter that cycle again of seeing multiple professionals at one time, as this did not work well for me at all before.

Please do not misinterpret my decision as that of being ungrateful towards the NHS- I am sure after reading my entire story, you will sense the appreciation I have towards this fantastic service. It was a case of still being left in the unknown. I had been repeatedly told that I was at the ‘top of the waiting list’ for 6 months, and I could not afford, for the sake of my health, to hold out any longer. This is why I am so thankful to Marg for stepping in when things came tumbling back down again. She is an incredible woman, which champions an incredible charity and service!