Disclaimer: The purpose of this blog is to demonstrate that the police do have the capacity and compassion to interact positively and support those with mental health problems or crisis. I acknowledge this is not the case everywhere or for everyone – and has not always been the case for me. I also acknowledge that I speak as a white, small-built (often mistaken for a child) female, and the inherent difference I may have in interacting with the police and mental health services because of my white privilege. There are often only negative stories around people with mental health problems’ encounters with the police, but I want people to know it is possible that it can be different, and that some forces are actively working to improve their relationships with those with mental health problems.

TW: Police, power, mental health crisis, suicide, self-harm, restraint, mental health act

Its no secret I’m someone living with complex mental health problems, it is, however, a lesser known fact that these can affect me at any time and any place and unfortunately I have come into contact with emergency services (particularly the police) many, many times over the course of the past 10 years or so.

Years ago, my interactions with the police were not particularly positive. There were many reasons for this but one of the main ones was that I wanted to die or self-destruct and they inconveniently kept getting in the way. Mental health was a much more taboo and less-spoken about subject, the police were quick to use the mental health act, and I was also absolutely terrified of male officers. I had a variety of interactions – most of which I can’t remember, some of which I do remember being called “silly little girl” or “we have real crimes to deal with”. I didn’t want to interact with the police, nor – on the most part – did they want to interact with me. I was a revolving door case in all aspects of my life – in and out of A&E multiple times a day, repeated suicide attempts, placed under section 136 frequently. It wasn’t nice for anyone involved. I felt like to be in contact with the police like I was that I must have done something wrong, that for some reason society was against me and I was the one to blame.

Then, in April 2016 I had a very traumatic incident involving the police. I won’t go into great detail, but to cut a very long story short I was a missing person, very distressed and self-harming in a rural location. At that point I did not understand how traumatised I was. I was tracked down and 6 male police officers, 2 male paramedics and 1 male mental health street triage nurse descended on the location and I was placed under the mental health act. I was FREAKED OUT. And did not want to go willingly with 9 males. Cuffs and restraint were being threatened (something which at that point had never happened to me). It was all a bit shit to be honest.

Then a female officer, (I will call her Lily to protect her identity) arrived on the scene. She approached me and everyone else backed off a bit. She met me where I was at, talked to me, gained my trust. And eventually I agreed to walk to the car with her. I was sitting in the police car, waiting whilst they radioed arrangements for me to be taken to the place of safety (which at that time could be A&E). Lily got called off to another job. It became clear that something BIG was happening in another part of the city, the radios were going wild and I heard at one point that 29 police cars were attending. Something serious was happening. There was a man going wild and trying to attack people with an axe. The police officers were understandably anxious about their colleagues. A female’s voice came over the radio, there were screams and scuffles “He’s got an axe! He’s got an axe!” The screams got worse and then the radio went silent for a couple of seconds. It then became apparent that the assailant had attacked the female officer we could hear down the radio. The officers I was with were understandably shaken (as was I). We went to A&E and it was swarming with police officers, the assailant and numerous injured officers were there. It was absolutely chaos. Already distressed, I tried to leave several times as it was all too much, I was restrained on the floor by police officers. I remember an officer telling me to “put up and shut up, silly little girl”, as we were sat in a cubicle waiting for medical treatment. At some point during the evening I found out that the female officer seriously injured was Lily. The officer who only half an hour before she was attacked had helped calm me and get me out of a bad situation.

I was admitted to a psychiatric ward and was upset about the whole incident. I remember staff telling me it was nothing to do with me and that they didn’t want to talk about it. Somehow a journalist friend found out I’d been party to some of what went on and pressed me for information. I did “put up and shut up” and squashed everything down, feeling guilty that I had been such a “silly little girl” wasting police time when serious stuff was happening.

Unfortunately as most people know, pushing a traumatic incident down and brushing it under the carpet doesn’t tend to end well. I became increasingly paranoid that if I was to interact with a police officer, they would some how get hurt. I was plagued with flashbacks about the incident, I felt guilty about this because it was “nothing to do with me”. It unfortunately came at a time in my life where I had to interact with the police often as I was being actively stalked and had to make police statements regularly. Each time I would be left dissociated, convinced the officer who had spoken to me was going to get hurt, interspersed with flashbacks of hearing it all over the radio.

A couple of things have happened which actually means I have processed and worked through this trauma (to the extent where I now train police officers on managing mental health – whereas only a few years ago I couldn’t even hear one over the radio). 1) The assailant was sentenced for grievous bodily harm and found to be mentally unwell and is still – as far as I’m aware – in Rampton high secure psychiatric hospital. 2) After I found out about his incarceration, and after managing to talk about what had happened to other members of the therapeutic community I was in at the time, I decided to write to Lily. Not thinking she would remember me. To my utmost surprise, a couple of months later I received one of the most meaningful “thank you” cards I have ever received. It was from Lily, it explained that yes, she really did remember me as I was the last job she attended, and she wondered how I’d got on. She validated my upset about the incident. Told me she was hurt but recovering and for the first time was experiencing things from the other side of the fence in terms of mental health. She thanked me for sending her a letter. She finished off the card with “I want you to know, Ellie, that its for people like you that I do the job I do, and I wouldn’t have changed anything”. This gave me the courage to 3) undergo the only EMDR I have done to date about the incident. Which over the years has lead to it being simply a difficult memory, that doesn’t trigger me, as opposed to a traumatic one.

It did take several years to get to the point where I would engage with police officers again. The EMDR did a lot of its work but it takes time to fully process. I still struggled to hear police radios and would often get more distressed if the police arrived. Because of the nature of my C-PTSD, things can trigger me unexpectedly when I’m out and about, and depending on the situation and how it unfolds, often the police are called to attend. Although it is incredibly rare I might be suicidal these days (hasn’t happened for a number of years), I do still experience significant distress and dissociation on a daily basis. I feel guilty when something happens and I disrupt other people’s days, or traffic, or take a bus out of action, or have the police attend. And this often in the past has made me more upset.

However, as time has gone on, and my ability to engage and persistence in moving forwards despite the crappy obstacles in my life, a somewhat positive relationship with the police has emerged.

I have a very complicated home life, and often means its not straight forward in dealing with me (I can’t just be taken home and its automatically accessible and safe), but the police have got to understand my situation, know that I can’t always be at home – but that sometimes thats the place I want and need to be. I have had various officers take me home, make me a cup of tea and give me 20/30 minutes in my house to make myself feel safe and grounded before I could go back out and try get on with my day. I’ve had many know that I just often need time and I will be ok, that I don’t speak when I’m triggered, that its not a great idea to touch me, that if I’m really distressed and dissociated female officers are a better idea.

In February I was extremely unwell, I was manic, kept disappearing, was scared of communication devices and very paranoid and delusional in my thinking. For various reasons I was unable to speak to the relevant people in the mental health team at the time and things spiralled very rapidly. I ended up in Edinburgh without my phone. I was up trees. I was distressed or manic in public and very chaotic. I had also done some significant self harm over a number of days and was too chaotic to get myself to seek medical treatment and was scared of a previous distressing experience in A&E whilst psychotic. For around 5 days the police were the people who were supporting me and my carer to remain safe. An effort was made to send officers that knew me, and if they didn’t – other officers would brief them on their way “This is Ellie, she might not speak, she doesn’t like being touched, she loves roller skating and works in the NHS” – so the officers attending not only knew my needs at the time but knew that I was a whole person with more to me than just the presenting chaos and crisis. They worked hard to keep me safe, to try get me the help I needed, and to not detain me under the mental health act. In Edinburgh I was handcuffed and put in the back of a police van by the Scottish police, this was very distressing to someone who’s biggest fear is being trapped. As soon as I was swapped over from Scottish police to South Yorkshire Police, somewhere partway down the country, the officers removed the cuffs and put me in a car not a van. In a prior incident where I was in Leeds very dissociated with no shoes on, South Yorkshire Police made the decision to send up their own officers who knew me, rather than exacerbate the situation with people who didn’t know what was going on. Eventually (as the episode was not subsiding and I wasn’t getting other support) the police did make the decision to detain me under the mental health act. But even that was done so carefully, so compassionately, and so much with my best interests at heart – and it ultimately led to me getting the help I needed at the time (and my carer a well-earned break). The whole episode – although chaotic and horrific, was dealt with with the utmost care and compassion, recognition of me as a human being, and as a person with a place in society. I don’t know where I would have been without the police that week,

A while back I had a situation with a fire engine siren on a major road in the city whilst riding my bike, one of the police officers that attended had actually seen me in much worse states in the past, and knew to just sit next to me and give me a pen and paper for when I was able to communicate. As is often the case, the first word I wrote was “sorry” to which he asked “what on earth for?” I replied that I felt guilty and hopeless about my mental health situation when I was out and about and caused chaos and used up police time. His response was “Ellie, I can’t actually tell you how pleased I am to see you being out and about, and continuing to try to live a life despite the difficulties we’ve seen you face, when it would be so easy to give up and not try. We’re here to help you keep doing that, never feel guilty”. Those words have really stuck with me.

I spoke to an officer today after an incident (the first in a long while) where I had been triggered and come off my bike in the middle of a busy road – he had seen me a couple of years before, much more distressed and never able to verbally communicate with him. Today I bounced back a lot quicker – partially because of the quick understanding of the officers as to what was going on, and was able to speak to him. He asked me “how do you think we’re doing with mental health? We really want to make sure we’re trying our best to understand what is going on for people?” This police force do genuinely want to know, they’re delighted when they see someone who was in crisis or distress in a better circumstance down the line, they think of people they’ve worked with for years afterwards. And this is despite attending multiple mental health calls a day.

In a time where SIM and the High Intensity Network has been prevalent in the police/mental health conversation. And when the imminent withdrawal of the Metropolitan police from attending mental health calls is looming, I think its really important to know that its not everywhere, every police officer and every police force that is acting in these punitive ways towards people with mental health problems. In Sheffield we have recently launched the South Yorkshire Police Mental Health Alert Card – a way for people who have mental health problems to alert the police as to why they might be distressed or experiencing symptoms in public, what helps, and what they would like people to do about it. This is a great way of reducing the number of unnecessary arrests and s136s. A couple of years back we ran a police placement programme in the NHS trust which allowed officers to come and shadow staff in the trust for 2 weeks during their probation – to see what life is really like in community mental health, psychiatrist wards, and what happens after they take someone to the s136 suite or place of safety.

Not All Cops Are Bastards. Many are kind, compassionate human beings, overworked and underpaid and lacking in resources like the rest of the country. They are filling in for gaps in other services. They don’t have the best training or things up their sleeves to help people with mental health problems, but definitely in this area – they try their best. I hope other areas can follow suit. We haven’t got it perfect here by a long shot, but the police here are trying, they want to learn, they want to find out more. And I just want to acknowledge that.

TW: Eating disorders, physical aspects, mentions of weight gain/loss and bodies, hospitals. Please practice self-care and stop reading if this is not helpful for you. It is intended to be raw and informative (particularly to professionals), but not to damage or trigger others.

By far my biggest expenditure in 2022 was my Eating Disorder. Not that it cost me thousands of pounds (though there are financial implications, and for some this can equate thousands of pounds and significant issues with debt – I will get onto that later), but the cost of my life, my physical health, my mental health, my work, my emotional wellbeing, my social life, my hobbies and activities, travel… there is barely an area of my life that has had a huge chunk chopped out of it because I’ve spent a year face-down in Anorexia.

There is still the overall view in the general population that eating disorders make you skinny, and thats the end of it. Spoiler alert…they don’t always even make you skinny. You can be underweight, normal weight, overweight, constantly changing weight and still have an eating disorder. How someone appears to you on the surface cannot give you an indication of how much they are battling with a disorder. I actually had several people (including a nurse doing my physical observations) tell me that I looked “well” (don’t ever say this to someone with an eating disorder – they will perceive this as “you have gained weight”), that I must be “recovering nicely” and that I looked like I’d put on weight. This all happened in the 24 hours before I collapsed in hospital and went into pre-cardiac arrest. I digress, the point of this paragraph was to point out that there are a lot of hidden costs of an eating disorder which most people would not have even thought of. Some of these are financial, but more often than not they aren’t – but the effects are still huge.

And the ultimate cost? Lives. Studies have shown that Anorexia Nervosa has the highest death rate of any mental illness. 1 in 5 people with the disorder will die, either through physical complications or suicide. I myself have known many people who have journeyed alongside me in the system in the past 2 decades who have lost their battle and are no longer with us. All without exception were intelligent, witty, caring, had the potential to have a long life ahead of them and all cut short. Some died as a direct consequence of ineffective or inappropriate treatment, or the withdrawal of treatment as for some inexplicable reason, there comes a point in eating disorder services when they no longer feel its “worth” trying to save someone. As someone who very recently had treatment and recovery goals withdrawn because I was “too unwell and unable to engage” and only suitable for “physical monitoring of the decline”, I can only imagine how horrific it must be to be told the only option left for you now is death. As feeling like the services had given up on me made me wonder what was the point of me not giving up on myself.

I’m going to attempt to break down what my eating disorder has cost me this past year into some sort of order, its not exhaustive and its also not representative of everyone with an eating disorder, but many people who have suffered will relate to a number of these on some level.

Physical Health Costs:

Despite the many years I have been in and out of one eating disorder or another – I have been fairly lucky with how well my body has held up over time. However I’m 35 now and no spring chicken. 2 decades of starving, punishing, cutting, hurting my body has meant my body doesn’t stand up to the pressures I put on it in the same way. Ironically the last 18 months or so have been the longest period as an adult where I have not felt actively suicidal…but its also the time where I’ve come uncomfortably close to death. Some of these things will maybe cause lasting damage, and I definitely haven’t mentioned all. but my body has suffered physically this year.

• Weight changes – I have lost and gained, lost and gained probably over 30kg this year – never holding a healthy weight for very long before my weight dropped again. This now means I have so much less wiggle room than I have before. I could be doing fine, have 3 weeks of relapsing and end up in hospital because my body can’t cope.
• I have been in constant joint and muscle pain. Unable to keep myself warm over the winter, I spent most of my days curled up in the foetal position crammed against my radiator until my spine bruised and this made everything hurt. I couldn’t sit or lie comfortably because my bones were in the way. Even wearing pants sometimes hurt.
• Feeling the cold – this winter has been incredibly hard. Because I was underweight, suffering from malnutrition and unable to do much physical activity around the house, I was jaw-clenchingly cold all the time. Not the sort of cold where an extra jumper or a few blankets would help. But the sort of cold that gets deep within your bones and never really dissipates. Even after a hot bath I would be shivering. My lips and extremities were blue, and looking back on photos now, my skin was kind of blue generally. Nothing could make the coldness go away, it didn’t help that I wasn’t drinking hot drinks or eating much hot food. It is one of the most unpleasant things I’ve experienced.
• Energy – I had none! At times I would be obsessively exercising, running on some sort of secret stores of adrenaline. But eventually my body just said “nope”. I have spent the past couple of months almost housebound and mostly in bed. I physically couldn’t walk across the park. Washing my hair was too much energy. Even sitting up to eat was too much. This was more than just feeling tired after a busy time or a big work out. It was a pervasive exhaustion which reached every cell of my body and would not shift.
• My brain is constantly foggy and unable to concentrate – whether I’m relapsing or trying to make positive changes.
• My teeth have finally been affected and I have a tooth that will need to be removed as temporary fillings only stay in for a matter of weeks before purging and the constant flow of acid from vomitting makes them fall out again – more often than not taking more tooth with it.
• My heart has been really affected by the past year. I have had problems with low heart rate in the past but this year is another thing entirely. I was diagnosed with Bradycardia (slow heart rate) with my resting heart rate struggling to get above 40 BPM and dropping below 30 at times. This isn’t compatible with living a life, and its not surprising I’ve struggled to be upright much. I’ve had arrhythmias, heart blocks, more ECGs that probably a whole family has in their usual lifetime.
• Dehydration is another thing that has really affected me. I struggle with fluids as well as food and have been chronically dehydrated for the past 10 months or so which has repeatedly landed me in A&E, causes me to black out, I’m always dizzy on standing, my veins collapse so nurses can’t get blood, and if they do get a vein often my blood is not very forthcoming to flow into the vial, my skin was dry and tented when I pinched it, I hardly ever went to the loo… the list goes on. None of this made me feel particularly well and definitely meant that doing my usual sports and physical activity was downright dangerous. I am doing a little better with fluids now but I still have ongoing problems. My bladder, used to not being anywhere near full, now struggles with the smallest amount and becomes very painful. The only way through this bladder pain is to carry on drinking and “stretch” my bladder again, but its very off-putting especially when the pain is so bad it brings me to tears in the middle of the night. My kidneys hurt.
• My bloods have been in various states throughout the past year. I’ve often had low white blood cell counts and raised creatinine – which signifies my kidneys haven’t been too happy with the dehydrated state I’ve been in.
• Digestion, without going all TMI, has not been fun. I have messed up my lower digestive system with months and months of laxative abuse – I don’t want to go into details but it has not been pleasant. In terms of my stomach, I feel full and bloated and get a lot of pain if I do eat, which again makes it not a very appealing activity.

Mental/Emotional Costs:

It goes without saying that as a mental illness, eating disorders take a toll on you mentally and emotionally. All that matters is food, weight, being in “control”, everything else in life goes out of the window – it is all-consuming.

• Unable to concentrate or think properly – if you’ve had a conversation with me in the past year the chances are I will not have understood half of it (but because I’m used to dissociating a lot anyway I’m fairly good at covering this up). I probably also needed half an hour to recover from the conversation too. My brain has been full of fog, and that has meant I have also not been able to think and take in properly information about recovering or what I need to do nutritionally.
• Losing capacity – its somewhat contentious as different people think different things. But there was a period where I wasn’t really considered to have capacity to understand decisions around nutrition and its impact on my physical health (day after having the crash team called I was all up for a 4 hour bike ride, still not having eaten or drunk anything). This was scary to be told. I can’t trust my own brain.
• Obsession with food – a starved brain is one that is thrust back into prehistoric times. No food, therefore I must do everything I can to find it. In anorexia this plays out often in an obsession around food, calories. I could not concentrate if there was food nearby. I wanted to look at it, smell it, ask people about it, look how many calories there were, see it being cooked. When alone I would spent hours “bingeing” on food reels on instagram. I would feel genuinely guilty after this, like I’d actually eaten all of the food I’d watched. I have so many lists of things I want to eat “when I’m allowed to” – its still growing and I’ve only ticked off a handful in a whole year.
• Numbing. Eating Disorders are an excellent way to switch off normal emotions, or at least focus all your emotions on food rather than real stuff. I would get really upset if someone put the wrong milk on my weetabix, but be oddly calm when I was told I could have died. It also meant that really naff stuff could be happening to other people but I couldn’t see any of that or relate to how they were feeling because my dam pear wasn’t cut into enough pieces. Unfortunately, now I’m trying to eat a little more, all these real emotions are coming back and I can’t cope.
• Body Image – not necessarily an issue for everyone with an eating disorder, but for me this is a huge aspect. Even though I have done various exercises in the past that prove that I see my body very differently to what others see, I still struggle with what I see in the mirror or when I look down at my body. I also know that this is the same regardless of weight (with the added factor that I really don’t like how I look when I’m underweight) but its hard to unsee what you really truly believe you can see. One exercise I did many years ago, showed that in actual fact I saw myself as 140% of what I actually was. Thats a whole extra half Ellie that I’m seeing that you’re not. I will spend hours body checking. Checking I can still feel certain bones, how clothes fit, how I look in the mirror, if I’ve got any double chins or not. It takes up a huge amount of my thinking space even when I’m well.
• Sleeping – I was constantly exhausted to the point that I would have to plan standing up an hour in advance. But I couldn’t sleep. It meant long hours in the night with just me and my own brain, with or without having to deal with laxative effects throughout the night which took energy to get me up and out of bed to get to the toilet in time. This left me with nothing left to give in the daytimes.
• Unable to connect to others emotions – generally, I consider myself quite an empathic person. However, not when I’m in the grips of Anorexia. I had numbed down all my emotions which meant I’d numbed down being able to understand other people’s emotions too. I was not able to be the caring Ellie I wanted to be.

Financial Costs:

Yes, there is a monetary cost for most people with an eating disorder. This can vary from person to person as to where these costs come from. It could be binge food, it could be lose of income due to being unable to work, it could be the costs of treatment. Its almost endless. But here are some of the ones that affected me this past year:

• The cost of food – diet/low fat/low calorie food is ridiculously expensive. Especially when I was originally starting to cut back on what I was consuming I would spend crazy amounts on foods that had almost no nutrition or energy in them. I would also hoard food I wanted to eat some day (that hoard is still largely untouched – but if anyone wants to check out the varieties of Kitkat chunky you can obtain – I’m your gal). Conversely, when I have been attempting to eat and drink again, I am very particular about what I consume. Thinks invariably need to be pre-portioned which ups the cost, particular flavours or quantities or energy values need to be met, and I will fixate on certain foods for a time as a “safe food”. The cost of living crisis is a real issue for those of us recovering from an eating disorder. Food is our prescribed medication…but unfortunately you can’t actually get it on prescription. It has to be the priority but thats hard when everything costs so much and your brain wants to make excuses for not buying food.
• Heating costs – Because I have been off work and largely housebound, I have been in the house all day. I mentioned earlier how unbearably cold it can be for someone with Anorexia over the winter. No amount of blankets will really help. It is therefore important that our houses are heated adequately as hypothermia is a very real prospect.
• Literally throwing food down the drain – for a long time it seemed really pointless me buying food as either I threw it back up, or didn’t eat it and it would go off (and food waste really bugs me). But if I don’t buy food then I can’t possibly eat it. So I had to continue buying food that wouldn’t ultimately end up fuelling my body. This time round I have not struggled with binge-purge cycles, but in the past these have cost me hundreds of pounds a week – buying large quantities of food, eating it in a bulimic haze before bringing it back up again.
• Laxatives – I won’t go into detail here because I don’t feel comfortable to. But they cost, and you need to take more and more as you get addicted to the feeling of being “empty” (however horrible that process is). I’ve not added up how much I was spending on laxatives at its worst but I know I couldn’t afford it.
• Clothes – As I mentioned before, my weight has changed drastically several times in the past year. And this has meant I invariably don’t fit my clothes. I was initially excited by my weight loss and went out and bought loads of new outfits to flaunt my new body in. But then I shrunk out of them. I was loathed to buy more as I knew one day I would have to grow out of them. I did. But then I shrunk out of them again. And again. Then winter came and I had no winter clothes and felt horrific just bundled up in leggings that wouldn’t stay up and oversized hoodies. It was really getting me down so eventually I caved and bought some smaller winter clothes. Which I know I will have to grow out of again. I have clothes in my wardrobe from children’s 11-12 year old, size 4 to size 12. And this is not the first time I’ve gone through this situation. Over the last 20 years I have constantly had to get rid of small clothes to try not to tempt relapse. But then I relapse and need to buy them again. Its a huge expense and one I can’t really afford.
• Work – Sometimes with my eating disorder I have been fine to work, and indeed many people with eating disorders are high achievers and will continue to work despite how ill they are. But for me this year it has meant huge swathes of time off work – or I’d start back too soon (because I’m a keen bean and love my work) and end up even more unwell and having to take time off. In October 2022 I finally admitted I needed to be off work for the foreseeable future, this has been the right thing to do but very hard. And its had financial implications obviously (and the benefits system is not set up to subsidise someone like me with a complex disability very well). Yet again, I might just be able to get by but any buffer zone I had financially has gone.
• Treatment – this is something that varies wildly depending on your post code, the services in your area, waiting lists, engagement and also unfortunately all too often judged on someone’s BMI. But its not always possible to access NHS treatment for eating disorders. Services are hugely over-subscribed and under-funded. The average wait from someone first presenting to their GP with their eating issues (which is likely to be quite far into someone’s eating disorder) and having treatment from an eating disorders professional is 40 weeks. For me it was 6 months from being assessed by the eating disorders service to accessing treatment – and I had two longish hospital admissions, lost my accommodation and had to have time off work – not even getting started on the physical and mental state I was in. Initially I was fortunate enough to be able to pay for a few sessions with and eating disorders OT I had worked with in the past. But I couldn’t afford to continue these for long and the severity of my illness was too much for one person without an MDT. I’ve spent a lot of time this year being too ill for treatment. And as recently as December the eating disorders service had withdrawn recovery-focussed treatment and were just monitoring and managing physical decline. Some people can’t even get referred to eating disorders services and face having to pay to go privately or manage by themselves.
• Paying for stuff you don’t use or do – In the past 4 months alone I have had two holidays either go wrong or not happen because of my eating disorder. The first one (a skate festival in Barcelona) ruined the trip for my friends, meant I had to pay a ridiculous amount to get an emergency flight back to the UK and put me in physical danger. The second (a trip to Tenerife with my best friend) never actually went ahead. The flights and half the Air BnB cost wasn’t able to be refunded for either of us. Countless other tickets for things have been wasted when I’m too unwell to go, things I’ve bought and not used – most of the money I’ve spent this year has been wasted.

Social Cost:

The physical and mental costs of an eating disorder are much more widely recognised. But in reality there is not a single area of life left untouched by an eating disorder. Here are most of the other areas it has affected me, and most of these lie within the “social” umbrella of life.

Work – already mentioned above, but I have spent more time off work than at work in the past year. I am incredibly fortunate to have a supportive workplace and a job to go back to but previously I have lost many a job due to my eating disorder. This only adds to the feeling of unworthiness, failure and isolation that many of us feel. Not being able to contribute meaningfully to society is difficult to manage. And also comes with a lot of external judgement.

Relationships – Every single relationship in your life will be some how affected. Romantic relationships will suffer incredible strain as the eating disorder ends up being a third partner in the relationship, and often people’s partners can feel more like the third wheel after the sufferer and the eating disorder. I have never managed to enter into a romantic relationship for a variety of reasons, including mental health and trauma. But a huge barrier, especially when I was younger is simply that I find myself repulsive and my body image gets in the way of me letting someone physically close to me.

Family – my poor family has gone to hell and back several times in the past 2 decades. It never really gets any easier. Quite rightfully sometimes they need to take a step back – especially if I’m unwilling to accept help. But they are always there for me when I do decide I can accept help and for that I’m very grateful – especially after all I’ve put them through. Birthdays, Christmasses, Holidays and many more things ruined or controlled by Anorexia. My younger sister especially has had to compromise a lot.

Friendships – I’ve already mentioned above that some things have affected my friends very closely and significantly and tested friendships to the brink. Some of these friendships cannot hold the strain of my eating disorder, and I have lost many over the years. I however am one of the lucky ones that also has friends who have stuck by me through thick and thin (pun deliberate) and I am so grateful for this. Something that helps this happen is people knowing their own boundaries and limits, taking a step back if they need to for their own well-being. This is what helps friendships stand the tests that an eating disorder can throw their way. Others are not so fortunate, and years of chronic eating disorders can leave people isolated and without many people in their lives.

Socialising – more socialising revolves around food, drink, physical activity etc. Or at the very least requires you to have the energy to join in and concentrate which usually means having eaten and drunk adequately. I have missed out on so many social events this year – even just going for a coffee with a friend has been something I’ve been unable to do until 2 weeks ago as I couldn’t manage even to order a black coffee or some water. Others I have tried to go to and its either been super awkward as I sit there not eating or drinking, or its been totally more than I can handle and has ended up in disaster or furthur relapse. Pushing myself to eat a meal out for example, might mean a week of restriction and purging and an on-going drastic cut in what I consume. All that because of one meal. Because I have not been able to muster up the physical energy to engage with much I have spent a large amount of the last 3 months in particular quite socially isolated. I deleted instagram and facebook so I didn’t get FOMO and just hit in my own antisocial bubble. Anyone who knows me will know this is not me. Luckily I have enough people in my life that realised I needed them to come to me – even if that was to sit on the sofa in silence or watch me nap.

So there is just a glimpse of some of the things that my eating disorder has cost me this year. There are many more, and many of these will not get better overnight or even in a couple of months. The toll can be long-lasting, even permanent. The journey out of Anorexia is tough, and there are challenges on every corner (and even on the straight bits to be honest). So if your friend is starting to recover from their eating disorder, don’t presume they will suddenly be able to do all they could do previously, or that they are well because they are consuming something. It takes time, many years, and is not to be rushed. Still ask them if there is anything you could do to make a situation less anxiety provoking. Do they need you to come to them? Do they need a lift to and from something so that they can preserve their energy to take part? Do they need to have space to have a brain break? Do they need anything particular to help them managing eating and drinking? Recovery is one of the hardest things a person with an eating disorder can do. But having people standing by and gently cheerleading makes it so much easier.

GPs are the first health practitioner most of us will have some sort of continuing relationship with. The first port of call for most things, and the ones that continue keeping us afloat after a more acute health episode. For most conditions, its taken for granted that the GP will understand some of whats going on and have adequate knowledge to treat or be guided by specialists to treat most illnesses and maladies.

However, for some reason, this doesn’t seem to be the case for mental health. Whilst its widely understood that GPs are a jack of all trades and maybe master of none (this is not to say GPs aren’t fantastic and specialist in what they do!), for some reason this doesn’t always extend to mental health. Especially mental health that can’t be treated with Citalopram, Fluoxetine and maybe a side of IAPT.

I hear so many horror stories from many of my mental health peers about their GPs. Dismissing mental illness, not understanding how to treat it, being unable to signpost to services, refusing to refer people to secondary mental health care, issues with medication being regarded as somehow “less important” than those for physical health, disregarding physical health problems as part of the mental health presentation and much more. To make matters worse, often because of financial issues, housing and social problems and general vulnerability, most people with chronic mental health problems will be subject to moving or being moved around areas a lot. Which means no sooner have you found a decent GP then its time to find a new surgery local to your new address (which you had no choice but to move to). There are so many things that make the GP-mental health patient relationship so difficult.

But there are so many things that can make it much easier and thats what I’m going to talk about in this blog.

I feel incredibly fortunate to have had an overall very positive experience with GPs. I have a few horror stories but they are generally a long time ago or with another GP at the practice that wasn’t used to dealing with me. I am currently with the same GP practice that I have been with since I was born. I had a brief period when I was at university (when my mental health problems were milder) where I was under a GP local to me at university. And I have spent time living abroad (no GP as healthcare wasn’t free and worked very differently), and in hospitals where I was obviously treated by medics available there. I’ve also moved around 27 times in my life (most being since 2016) – not including coming home on breaks from uni and including several stretches of homelessness having “no fixed abode”. But I’ve still been under the same GP practice, and since 2011 the same GP.

Aspect Number One that has made it easier for me to have a positive and supportive relationship with my GP: Being given permission to remain at my current practice regardless of my address or lack of, until the day comes that I no longer need secondary mental health services. My GP noted about 10 years ago that I was someone who was likely to be under a variety of different health services for a long time. He wrote to the partners of the practice and requested permission for me to remain under them. This was granted, and I believe it is reviewed every 2 years, so far no one has questioned it as I very much am still in need of secondary mental health services. This has allowed me to build up a rapport with my GP, and has provided me with consistency in care – which actually means my GP is by far the longest running person involved in my care.

Aspect Number Two: My GP admitted when he first met me that he didn’t know much about mental health, and eating disorders. I appreciate when people don’t bullshit me and make out they know everything when they don’t, be transparent and honest about limitations – this is much more helpful and helps us trust you.

Aspect Number Three: My GP made it his business to find out about the mental health problems that affected me. I don’t know the ins and outs of what he did to achieve this but his knowledge grew very clearly particularly over the first few years I knew him. He definitely did trainings, and he used me as someone to learn from and to ask questions of. I even remember being asked to consult with the practice on some service developments pertaining to young adults moving into adult services – an area that they knew as a practice, I had fallen down the chasm of when I was in 6th form. He still tells me he learns from me, and I appreciate that.

Aspect Number Four: Non-judgemental stance. It should come as standard but unfortunately, when it comes to mental health problems in general healthcare it often doesn’t. My very first encounter with a GP about my mental health problems (aged 17 when my mum dragged a very reluctant me to the doctors because I wasn’t eating) was full of judgements. My mum was told “Its a phase, she’ll snap out of it” (haven’t managed to do that 18 years later) and “Your daughter isn’t thin enough to be Anorexic” (which lead to many years of me not feeling my eating disorder was “bad enough” to do anything about). That GP is always slightly sheepish should I see them now – generally about my physical health caused by my enduring eating disorder… But my actual GP, and many others at the practice take me as I am. They don’t see me working and presume I magically don’t have mental health problems anymore, they don’t see me too weak to talk or pacing anxiously around the waiting room unable to sit down and presume I’m not trying. They see me for who I am, a complex individual who has skills, passion and aspirations for the future, and one who is significantly traumatised and struggles on a daily basis to cope with the painful world around her, and one who repeatedly climbs herself out of incredibly dark places. I know that every time I have an appointment, that I will be taken at face value, not judged for how I am presenting or the problems I’m having.

Aspect Number Five: The rest of the GP practice team. Its no secret that getting a GP appointment is an incredibly frustrating experience. (Seriously, who’s bright idea was it to decide the whole country should ring up at 8am on the dot to get an appointment only on the same day?) And often GP receptionists have a reputation of being somewhat dragon-like and inflexible. But here it’s different. Occasionally I might get someone on an off day, but 9 times out of 10, I ring up and get what I need fairly easily, even if thats medication that just needs to be signed off, a phone call from my GP, or understanding that its a little bit more than that and making time in their busy days to see me in an emergency. They are understanding of the fact that I’m over an hour away on public transport and this can be stressful, they are understanding that sometimes its a crisis and things can’t wait. They are understanding of my needs and risks around medication. They make sure when I’m needing to see a GP nurse regularly for physical monitoring that its generally the same person, who doesn’t just do the physical observations, but talks to me about how things are going, is proud of positive steps I take, communicates to the eating disorders team about my wellbeing whether they like it or not, makes sure if its not her that I’m seeing one week that she has talked to the other nurse seeing me in person to explain my background and what the plans are.

Aspect Number Six: The GP working collaboratively with the local pharmacy. Medication is a major issue for myself and many others with mental health issues. Often we are on a lot of medication which we can forget to take, forget to order, struggle to pick up, need dispensing in a certain way, not to mention the aspect of risk that comes with dispensing medication to someone who has a habit of stockpiling and overdosing. I’ve tried to take prescriptions to pharmacies more local to me, but often I find there’s delays on medication coming in that aren’t explained to me, I’m over-dispensed medication (I usually only have a week or two at a time) and there is no awareness of my history or risks or any communication with my GP. So for me, it is totally worth it (even though its an hour by public transport) to stay at the pharmacy local to my GP practice. The two communicate seamlessly to each other. The staff at the pharmacy know what days I like my medication to be ready for. They dispense it in a special way which makes me feel more safe. They are attuned to how I might be presenting, and have on occasion refused to dispense medication to me as they’ve noticed a pattern in behaviour that is suggesting I am planning to overdose – such as trying to fill several prescriptions at ones. Instead of just refusing to dispense, they speak to the GP, they have phoned the home treatment team or my care co-ordinator on occasion, they’ve given me a space to cry or take time out and talk to someone. I feel safe. And that allows me to take my medication as advised.

Aspect Number Seven: Medication preferences. He knows that for me, medication is a last resort as I really struggle taking it and that I much prefer other things such as lifestyle changes that might help with the problem. For example, when I came out of a long term hospital admission, I was on an incredibly high dose of Gabapentin for the nerve damage in my legs from self-harm. Without the Gabapentin I would suffer from painful pins and needs and the sensation that my legs were crawling around inside of themselves. I was told I would probably need to take this for the rest of my life, that my nerve damage can’t be cured. But over time, we reduced my Gabapentin as I increased my physical activity – things such as cycling and skating that used my legs (and the nerves in them). To my utmost amazement I found that I was entirely off the medication and not experiencing any nerve pain. Last year I had a period of time where I was in bed a lot, I started experiencing nerve pain again and without making the connection between the lack of physical activity and the return of the pain I contacted my GP. Instead of just flinging the medication back at me, he talked through if anything had changed in my life recently and made the connection with the physical activity. He also acknowledges my knowledge of the mental health system and medication etc. If I do need to go on to medication for something he thinks carefully about the options he presents to me. He knows that side effects of gaining weight are a huge trigger so steers away from medications that have that as a side effect, he knows I struggle with dissociation so some psychiatric medications can actually make that worse, he knows that I prefer not taking medication, or taking it in certain types of capsules or a liquid format. Without fail he will offer me a couple of options, tell me he trusts my ability to be able to research and weigh up the pros and cons of each and leaves the ball in my court and will prescribe whatever I have chosen as my preferred option.

Aspect Number Eight: Collaborating and communicating with the mental health teams, my family and other appropriate outside agencies. My GP generally has a back-seat in my mental health care. But he reads all the letters that are copied to him and contacts me or asks me about it at the next appointment if he needs to clarify anything. He also is willing to talk to anyone who needs to speak to him (again, whether they like it or not). He has written some banging letters over his time, advocating my needs and demonstrating quite how much he understands what is going on for me any my journey. I never have to worry about the mental health team prescribing me something and my GP kicking back against it. He is happy to admit where his knowledge ends and someone else might have a better knowledge from this point. Zero territorialism.

Aspect Number Nine: Always respecting my wishes. My GP knows me. He knows what I like and what I don’t like. He knows what I would like to happen if I’m unwell and can’t articulate my needs. As I’ve already mentioned – he knows my wishes regarding medication, which is helpful sometimes when I am unwell and unable to decide or advocate for myself. He knows that phonecalls are easier for me because of distance but also knows when he needs to see me in person. He knows how to communicate (or not to communicate) with my family. He knows my values, my hopes and aspirations and can remind me of these in the times when I forget. He remembers where I’ve come from and the progress I’ve made even when things feel really dark and reminds me of this.

Aspect Number Ten: Seeing the whole of Ellie. My GP doesn’t see me as “eating disorder” or “personality disorder”, or even “unwell person” or “well person”. I’m Ellie. And all aspects of me – whether mental health related or not are relevant, valued and respected.

I’m so grateful to have such a consistent, understanding, respectful and non-judgemental GP practice behind me. My mental health journey has been (and continues to be) turbulent. But they are a gentle constant in the background that I don’t have to worry about. And thats everything

Trigger warning: Eating Disorders, Medical Emergency, Hospitals, Mental Capacity

Its no secret that I have a lot of mental health problems, and that I can fluctuate quite significantly. But on a day to day basis, one thing that I’m generally sure about is that I’m not mad. For me, a majority of my mental health issues are pretty logical to tell the truth. They may not look logical to you as an outsider looking in, but inside my brain, knowing the experiences I have had, and the memories I carry with me and the scars they have left – the way I live my life, the way I avoid certain triggers (however much that impacts my life and ability to function), the way I respond to things (with emotions that could look disproportionate to the situation but are actually emotions from the past that have been triggered by the here and now) – is all actually pretty logical.

But the one area that challenges this is my eating disorder. When I am in the grips of Anorexia or Bulimia, I am a mad woman. I’m a mad woman because I believe wholeheartedly the lies that Anorexia tells me. I’m a mad woman because I can’t see anything else outside of my final goal. I’m a mad woman because I can’t see even the most serious of situations as serious.

Eating Disorders (for me), are just one mad thing after another. I’ve suffered with both Anorexia and Bulimia over the 20 or so years I’ve had an Eating Disorder. When Bulimia is in power I am mad when I am frantically scouring the supermarket for binge food. I am mad when I am driving around town, shoving pastry after pastry into my face, not caring about crumbs in my usually clean care. I am mad when I am desperately downing pints of water in preparation for bringing it all back up again. I am mad when I am throwing up in bins, in the back of my car, in bushes, in multiple different toilets in that hotel in Jordan in 2012 that the fragile Middle Eastern plumbing couldn’t handle and I ended up blocking a whole floor of toilets. I am mad when I’m eating anything that is in the cupboard, or in the freezer, or picked out of the bin. When Anorexia is in power I am mad when I scour the supermarket for food I will not buy. I am mad when I spend shedloads of money on expensive, low-calorie food with no nutritional value. I am mad when I spend £80 a week on laxatives. I am mad when I think that 5 hours of exercise a day is a “rest day”. I am mad when I think that water is the perfect accompaniment to weetabix instead of milk. I am mad when I look in the mirror and see a horrible fat mess when in actual fact I am underweight.

I’m a girl totally consumed by this point. There is nothing, nothing at all in the world more important than obeying Anorexia and Bulimia and their toxic lies. And the worst part is that I don’t realise I’m mad at this point.

So I find myself, where I left my last post. I’m feeling confused as to why everyone is making such a big deal. I can’t understand the gravity of the situation. There are about 10 medical staff around my bed – but its the middle of the night? Maybe they’re just a bit disorientated. Night shifts can do that to people. Eventually they all go away and I drift in and out of sleep. Kind of annoyed that people keep taking my blood pressure and disturbing me, it has been a long day.

The next morning I see a doctor. I’m still attached to fluids. I’m feeling pretty good actually compared to yesterday. I think of the plans I have for that weekend, the week ahead – plenty of moving about, no food, definitely no water. I feel fine now – so I’ll definitely be off home later. Even though I wasn’t happy about the fluids, they’ve happened now so that will do for a while. I can’t understand that humans need to keep drinking, and keep eating – it’s not a one off event.

It’s great here though, because the housekeeping staff soon catch on to the idea that I don’t eat when they bring the trolley round – they’re missing me out now so I don’t even have to say no. No one is bugging me about not eating. The doctor says I have to see liaison psychiatry before I can go. I’m fairly used to this (see first paragraph re. plenty of other mental health problems) and I’m also fairly used to it mainly being a formality before being sent home. I feel pretty confident in my personal assessment of myself – had a bit of a wobble, but I’m fine now.

This is not what liaison psychiatry think. “You’re physically stable because you’re attached to an IV, when you go home you won’t be”. OK that makes sense, but I don’t actually need it do I? I was doing just fine before I came into hospital. I haven’t had a drink for a whole week now. “What about Friday night? Do you know you nearly had a cardiac arrest? It made scary reading in the notes. Does that scare you?” Not really if I’m honest. I am slightly anxious wondering what it might have been like for my carer to find me like that, but in regards to myself I am not particularly worried about it. I just fainted surely, I’m fine now – everyone was just overreacting. I list all the things I have to be at home for – work, social plans, exercise plans, my garden. I become very infatuated with the idea of sitting in my garden in the evening over the coming weeks. Like it’s the most important thing in the world – over physical health, mental health, anything.

“I don’t think you have the capacity to understand decisions about your nutrition and hydration and how that relates to your physical health”. Well this is confusing. I’ve had times where I’ve not had capacity before – but I usually don’t remember them. I’m definitely in the here and now right now, I’m having a sensible conversation. I have insight, people always praise me about my insight. “We’d like to speak to your parents and your carer, and for you to stay until the consultant psychiatrst is here tomorrow – can you stay one more night?”. I respect the professional in front of me, she is a colleague as well. For this reason I agree (reluctantly) to stay. I guess one advantage is that the ward still don’t realise I’m not eating so at least I’m getting away with that. The thought of that makes me feel a little bit better. “One night, I’ll stay one night, but then I’ve got things to do”. This whole situation is bizarre for me. I’m used to being moved on as fast as possible in services or in hospital. I have the label of BPD so usually this is how things are approached. It confuses me now because it feels like the opposite is happening, and for reasons that don’t make sense to me.

The next day is for some reason, a little more blurry. I see the psychiatrist. He wants to speak to my parents too. For the first time, tiny alarm bells start ringing, but probably not for the reasons that they should – I’m just ever so slightly anxious that I’m being backed into a corner and if I don’t agree to what people say, I might be facing a section. This thought is to distress me quite a lot over the coming days as I struggle to come to terms of the reality of where I am. The psychiatrist also asks me to stay in hospital. Why are people making mountains out of molehills? I really don’t need to be here. I’ll accept I do have some issues with food, but they’re not that serious.

Towards the end of the day, someone from the Eating Disorders Service arrives. I’ve known this person for about 15 years by this point, initially I’m comforted by this because I feel like that must mean they know I’m fine. But that is definitely not how the consultation unfolds. “You’re very unwell, your heart rate is dangerously low. You could have had a cardiac arrest” (Why are people making such a big deal about this – I fainted – its not a big deal). “You need to stay in hospital. You need to give up your control and hand it over to us and trust us to make the next steps” What about work, and everything else I have to do? “Thats not important right now, tomorrow you will start on a refeeding meal plan. You will eat. You will be moved to the correct ward, you have to trust us”. I don’t trust easily, so this doesn’t seem like a nice idea from any angle.

I feel trapped. Feeling trapped is a huge trigger for me. I’m sitting alone in my hospital bed, with not many friends knowing I’m here. For the first time, I get upset. I’m scared. I’m trapped. I’m confused. I’m fine. I’m not fine. I’m fat. I’m anxious. I’m a failure. I’ve let people down. All these thought start wizzing around in my head and I start hyperventilating. A support worker comes and I ask to be taken outside. We stand outside next to A&E and the helipad. Once again – seeing real ill people. I still don’t understand why I’m being classed in the same category as them. The helicopter arrives, delivers someone in a critical condition, then takes off again. The down thrust from the blades and the extreme noise makes every atom in my body shake. I feel very alive. This intense all-body and senses experience brings my anxiety back in check, I actually feel somewhat exhilarated. I have a few moments of clarity – accepting that there is a journey ahead of me. But it doesn’t last for long.

Part 3 to follow

TW – Eating Disorders, hospitals, medical emergency

It’s a Tuesday, its the middle of the hottest heat wave the UK has ever had. My phone has switched itself off because its too hot so I can’t even check the temperature – but the news has been saying its reaching 40 degrees in many parts of the country. People are hiding at home, living in paddling pools, knocking back iced water and drinks, working from home, not travelling or exercising. 

I however, am different. I’m superhuman. It doesn’t matter what the news is saying, what the medical advice is in this heat. It doesn’t matter what my doctor, my CPN, my carers, my family say. Because I’m different. I don’t need to avoid exercising. I can’t avoid exercising, I have things to do, places to be, calories to burn. I don’t need to drink more water – I’ve been doing just fine without for a while now. I’m not sweating anymore anyway, even in this heatwave so I’m not losing any water so thats fine. And as for food…well thats definitely not needed. I’m getting by just fine on my one weetabix in the morning and some fruit at lunch. I mean, it does’t always stay down – but eating is something I shouldn’t be giving in to anyway. I’m fine.

The day before I cycled for over 4 hours in the heat, and I did the same today. I didn’t drink a drop of water until the evening of both of those days. I’m fine, I’m superhuman, I don’t have the same needs as other people. 

A week later. It’s Tuesday again. I’ve once again cycled for a number of hours, I’ve been skating quite a few times. I’ve not drank since the weekend and I’m not sure if I’ve eaten, I think I have, but it doesn’t matter. I’m still fine. I’m tired, I’m frantically cleaning my house, doing DIY, Gardening, running errands, sorting out my shelves. I’m crying because I’m tired and thats weak. But I’m fine. People have been saying how I look like I’m having a great time from my social media. I’m fine.

Two days later, it’s Thursday, I’m at work. I still haven’t had anything to drink since the weekend. I definitely haven’t eaten since I had some fruit yesterday. I’ve just been to the GP for my weekly vital signs, weight and blood tests. They said I’m fine – I look much happier than I did a week ago. I’m not crying. I don’t have any tears. Thats no sweat and no tears, I’m not losing any water so don’t need to take any more on. Someone at work says I look really well. Like I’ve put on weight. Dammit. I must really have let myself go. I leave work early because I need to cycle. I need to keep moving so people can’t see how lazy, selfish and disgusting I am. 

Friday morning 8:30am. I don’t remember going to bed – but my carer is saying I’ve been asleep since 6pm last night. I normally get up at 6am – what a lazy cow still in bed at this time. I need to get up but my body doesn’t feel like its working properly. I’ve got things I need to do.

My carer is ringing 111. Doesn’t she know I’m fine? There’s nothing wrong except a disgusting display of selfishness, greed and laziness. I need to get the fuck out of bed and do stuff. They’re making a mountain out of a molehill – saying I need to go to A&E, 111 always overreact. I’m fine. The GP said I was fine. People have said I look fine. I am fine. I’ll go to A&E just to shut everyone up – and at least I won’t have to eat and drink there, thats one thing off my plate.

We arrive at A&E at 10am. By 10:10am I am already lying in a bay having an ECG and blood tests. In all my hundreds of times in A&E the only times I’ve been seen quicker is when I’ve been in Resus or that one time I came when it was the junior doctor strike and there were literally 6 patients in the entire department. Maybe they’re just having a quiet day, because I’m definitely not an urgent case. I’m fine.

I lose track of time after that. I’m not really sure what’s happening, I haven’t looked at my phone properly but there’s a lot of messages on it. A lot of time keeps passing and I don’t know where it’s gone. I remember that my carers have a meeting to help them understand eating disorders a bit more with an OT that worked with me in the past – I’ve got to make sure she knows she can go and log into that. I’m fine so she doesn’t need to worry about me. I’ll be heading home soon anyway.

The medical staff must have got the wrong end of the stick. Maybe they’ve mixed up my notes with someone who is actually ill. I’m kinda tired. But I’m fine. People are just making a big deal. They’re wanting to give me IV fluids. I don’t need them. I don’t want them. Heck the idea of being pumped full of heavy fluid fills me with dread. I have a panic attack. A healthcare assistant tells me to tell me 5 things I can see, hear, smell. I come back into the room. But I really don’t want to be back in this room. It’s for sick people. I’m not sick, I’m fine. There’s still fluids going into me, I freak out sporadically when I watch the drips going into the vial…imagining how it will make me balloon out of control. A greedy, fat mess. They stop the infusion to give me a rest, but not for long. “You need this to save your life” says the nurse “its my duty of care, I wouldn’t be doing my job if I let you not have it”. But this doesn’t make sense to me, I’m not dying, I won’t die. I’m superhuman. I don’t even do basic human things like pee anymore. They’ve definitely mixed the notes up. There’s probably some poor old lady in the next cubicle actually dying whilst they’re giving me her treatment. I’m fine.

The day drifts on, I’m confused about the passage of time. Hours slide by so fast but then minutes watching the drip take an eternity. I’m not sure if I’m awake or asleep. I get moved to a ward. They take more blood. Good, at least thats getting some of that fluid out of me. I congratulate myself on having got through another day without food. Its easy here just to turn away when the food trolley comes (before long the staff stop asking me “C3 doesn’t eat” – my Anorexia is having a whale of a time.)

I convince someone to unhook the IV. Good. No food. No fluid. Ideal. I’m fine – fine people don’t need drips.

Sometime in the night I get out of bed. My vision turns into a dark tunnel. My legs won’t hold me up. How lazy of them – everyone must think I’m totally pathetic. I grab hold of a nearby sink to steady myself. 

Everything goes black.

I find out later that I nearly had a cardiac arrest. My heart rate had dropped to 25 which isn’t really compatible with functioning as a human. If I had been at home and not in hospital it could have been much worse. Coming round on my bed, with the crash team around me, de-fibrillator pads on my chest, a variety of people prodding me, hooked up to various machines, having been given drugs to increase my heart rate – apparently my first words were “I’m fine”. I didn’t understand why everyone around me was scared by this, I was bothered that my carer could have found me like that at home, and bothered that I’d taken up people’s time. But I couldn’t compute that even such an event could indicate that maybe I’m not fine.

Part 2 to follow.

I’m stuck. I’ve been stuck for years, but right now I’m really stuck. I’m yet again what is known as a “bed blocker”. Makes me feel like a lump of wood or lead stopping a bed leg from sliding across the floor…

A bed blocker is someone who is taking up a bed (in this case in mental health services) and who can’t be discharged or moved on to a more suitable place, so ends up in a bed in a place thats maybe not where they’re supposed to be. Sometimes this might be that someone was in hospital and unwell, has got better but hasn’t got forward accommodation to move onto. Sometimes it might be that they are waiting for a bed in a more specialised place but there is a blockage further up the line so that bed is not free yet, leaving that person blocking a bed that could be used for a new admission. Its a bit like when you’re buying a house and the chain gets stuck or a link breaks and no one can move. Its not a nice term, its a bit nicer to be called a “delayed discharge” but ultimately I prefer Ellie…

I’ve been a bed blocker before. Because we’ve had a half-decade long battle to find a suitable placement/living situation for me, I’ve ended up stuck in the system in various ways at numerous points. I’ve been stuck at a step-down service for 6 months, stuck on the decisions unit for 3 weeks (not to be recommended, it really is a glorified waiting room). Its always something that makes me feel guilty, I don’t choose to be in this position and currently I’m super grateful for a safe roof over my head, but I’m aware its not the right roof – and that causes problems. I also know I’m not the only bed blocker – I’ve met quite a few over the years – a majority are blissfully unaware of the systemic issues with the situation but I’m very much not. I feel more guilty than ever as I’m fully aware that our system is over-subscribed, that there are generally at the moment never any female beds in acute wards in the country, let alone in the city, and I’m sitting here taking up a valuable crisis bed long-term, still with no end in sight. I sit in meetings at work where I hear of the state of the bed situation, or that our crisis services aren’t responsive enough…and here I am contributing to those issues!

Don’t get me wrong, this is the best place for me right now – but I’m not here in a normal context and I’m hyper aware of that. Its also the equivalent of having broken your arm and getting a cool sparkly purple cast cover that looks totally rad…but actually in reality you would much prefer to not have a broken arm in the first place. Its nice, its comfortable, its safe, the staff are brilliant – but its not the right place.

I feel pretty helpless, I can’t do much to alleviate the situation myself. If I was allowed to go round knocking on doors of all the services that might take a traumatised, sometimes-high-functioning-sometimes-low-functioning Ellie, then I would. But finding somewhere is not that simple. I’m desperate to move forwards but I don’t want to move forwards to the wrong place just because its a place – I’ve done that in the past and it didn’t work out very well. Ultimately I want to go home, but thats not a possibility right now. So the next best thing is hoping for an option that will help me achieve all the things I need to achieve to go back home sooner rather than later. At this point I’m wondering if opting to give up my life again temporarily – to go somewhere and work really intensely on my trauma, so I’m at least at a place where I can handle my limitations and dissociation more easily and more safely and therefore need less support (and therefore maybe move back home in some capacity) is the best idea now. But thats a whole different ball game. Although we’ve got a pretty green light in terms of funding for residential care, there isn’t really any that would provide that, we’d be looking at hospital admissions and the funding is a whole different situation. I have been offered therapy in the next couple of months by a charitable organisation, which is a good thing – but the likelihood of that tallying up with a safe and appropriate living environment, in Sheffield, for that to happen is very slim. I know trauma therapy will be horrific but will also be life changing. And hell does my life need to change.

At the end of the day I don’t need a bed in a crisis service, I need to address my trauma – and I’ve needed to do that for probably most of my life, without that need being met I’m unlikely to stop being a block thats stuck in the system any time in the near future.

The last couple of months… well maybe even the last half year has been a bit of a messy blur.

I can’t help but feel a little like I’m stuck in ground hog day. I’ve found myself in the same position, same place, at the same time of year as exactly 2 years ago. It’s hard to not let feelings of failure take over. But at the same time I’m also in a really different place to 2 years ago – partially because I have 2 years more of life under my belt… 2021 has been an incredibly hard year, harder that 2020 and thats saying something!

To cut a very long story short… many people will know that I have been attempting to live in the community, renting my own home, with the assistance of a team of PAs (Personal Assistants) since the beginning of 2020. This package of care came to fruition after various attempts to place me in other residential care facilities either failed or weren’t appropriate, or were downright damaging and traumatic. This could have worked, I had high hopes for it. But the package of care was poorly designed and hurriedly put together, and was not flexible or responsive to my needs, my fluctuating wellness or illness, or able to deal with a global pandemic. For most of 2020 I struggled with this new way of living, being an employer to my PAs, first time living in the community in years, in a global pandemic – largely alone. The person “co-ordinating my care” at the time was judgemental, controlling and at times abusive, and I’m still struggling to come back from the harm that caused.

Myself and my PAs struggled through and made the best of what we had. For the large part, the PAs were not listened to and appropriate changes to the care package not made and ultimately we eventually struggled to hold it together. The way it was designed meant that I had to spent at least 8 hours of a 24 hour period out of the house – or stock up my hours by spending a lot of time out so I could have a day in from time to time. 2 years of this took its toll. I was exhausted. And when I started to recognise the signs of becoming unwell in the early summer, there was nothing I could do to slow things down, take time to rest and make myself feel safe – all those things other people take for granted. I had no choice to be out, very unwell, in public – which affected my dignity and further made things worse.

The PAs were not appropriately supervised, didn’t have adequate training, or a back up plan to fall back on if any of us were unwell. If a PA was unable to work a shift (or unwilling, as was the case at the beginning of the pandemic), and I couldn’t find a friend to help out, then I slept rough. Sometimes spending a day at work, sleeping in the park and then going back to work the next morning. I don’t really know what its like to experience lockdown. Because I spent the pandemic locked out. The whole world was going through one difficult experience and I was going through something totally opposite.

We tried our best, I learnt a lot of new skills just about living in a house which I hadn’t done for so long. In some ways I was so much more independent, but in others I was so tied down. As the employer for my PAs I was responsible for creating their rota, submitting time sheets, recruiting new ones etc. – this is a lot when you’re well. Let alone if you’re unwell.

I’m so indebted to my PAs for trying so hard for so long, sometimes putting their own wellbeing at risk in order to try and manage mine. A wonderful human being who will remain unnamed but you know who you are – took my PAs under her wing and offered them support and supervision – something that the Trust had never provided. I think without this we would have fallen apart much sooner.

I entered 2021 with a much more supportive set of clinicians helping out. My care co-ordinator has proven to be human, compassionate, accepts me for who I am, un-judgemental, listened to the PAs and the concerns of my friends and family. This is new for me and still is a novelty. For a period of time I did some stabilisation work with a senior member of staff from the CMHT, this was so positive, gave me a voice and more acceptance for what the reality of my mental illness entailed, but unfortunately, despite all these efforts – the system as a whole got in the way and we were no longer able to move forwards. An amazing social worker worked with me and my care co for months on the most amazing, person-centred social care assessment which will be really useful in the future. I’m so grateful for all of this – as this is much more than I’ve had in the past. But what really upsets me is that despite these individuals working their socks off, our system is too broken and constantly working against them.

After several months of severe crisis (I won’t go into details but it involved nearly dying, being sectioned, surgery, being a missing person more times than I care to acknowledge, horrific levels of distress and dissociation, being unable to work or function at all for a number of months but also being unable to be at home and rest, PAs becoming unwell themselves and working on very reduced numbers) the PAs wrote to the Trust with an ultimatum – basically “Give us and Ellie the support and resources we need to make this work, or we are withdrawing our care”. A lot of people got angry on my behalf – but I 100% stand by that this was the right decision – for me, for the PAs, for the future. We were in over our heads and the PAs were being asked to be crisis teams, trauma therapists, doing their own employment admin – amongst other things. They are paid £9 an hour – not enough for what they were expected to handle. It wasn’t fair on any of us. They did the right thing and I’m pleased to say I’m still in touch with many of them and we parted on good terms.

So that brings us to now. The situation is that after a complex case meeting, a mere couple of days before the PAs were due to withdraw. A service in Sheffield that is only meant for short-term crisis care, stepped in and gave me a place to stay until a longer term solution is sorted. I have been here since the 1st December. It’s been up and down and everything in between. I’m struggling with what feels like a backwards step in my independence, I miss home, I miss my rats, I yearn after being “normal” and living in a “normal” setting. Learning how to manage myself in a new environment again is hard. The constant ebb and flow of other service users can be difficult (sometimes I go to work and come back to 2 new admissions or to 4 discharges), we have been shut down twice due to COVID in the service, and I’m struggling with basics like not having a desk and chair to work from home with, but also being unable to work in communal areas where there are tables because service users are around. But on the other hand, I’m free. For the first time in 2 years I can come and go as I please. I don’t need to plan my whole life in minute detail 6 weeks in advance. I don’t have to spend my spare time writing rotas. I have a warm, dry, safe place whenever I need it (the novelty of being able to “pop home” is still massive). I’ve been allowed to make my space as homely as I can. The staff are experienced, supportive and empower my independence. I am being well supported by my care co-ordinator. My friends know that now I am spending time with them because I genuinely want to – not because I don’t have anywhere else to go thats safe. I’m able to reach out and help friends that are having problems, do little favours for others. I’m able to assess my own wellbeing and respond to my needs. I managed to return from more than 3 months off work on the same week that I moved here. Its not perfect but its allowing me to function and hold things together the best I am able to considering my mental illness. My friends and family are more relaxed as they know I am safe and they don’t need to worry. I’m very grateful.

But I’m still sitting here knowing that the future is very uncertain – and I may have little control over it. We still haven’t found somewhere suitable for me. I don’t know if I will be able to keep my home through this. Because I’m here my benefits have stopped, even though I’m still paying rent and bills as normal and my costs have not gone down at all. This is putting more pressure on me to take on more work – which I know I can’t sustain alongside my mental health. Its hard, to once again be an employee of the Trust whilst living in a Trust service, it can make boundaries complicated for me and for staff round me. I don’t know anyone else who is in this situation often and its quite isolating in that sense. I may be able to remain in Sheffield but equally, we have exhausted a lot of options in the city and the only answer may be to be moved to residential care out of area. The ongoing issue of never-having-addressed-the-underlying-root-of-my-problems still looms. I still need some form of therapy, I accept this will be hard and destabilising but without this I am unlikely to ever get out of this Groundhog Day-esque loop. I struggle with the label “complex case” – I don’t think I’m that complex, I just don’t fit into the pre-designed boxes and the system is not easily flexed to accommodate people like me. I feel like the answer is fairly simple – I need appropriate therapy and the ability to live in an accessible and safe environment alongside it – two things that have never happened simultaneously. But getting to that situation is easier said than done. I also struggle when people give me trivial advice “have you tried IAPT” (they wouldn’t touch me with a therapeutic barge pole), “everything will work out eventually” (I have been in this situation repeatedly since 2017 – I’m not sure it will) – because what lead me to this point in my life is not trivial.

I feel like we have more tools, more knowledge, more understanding than we have done previously in this situation. There are more people that have taken the time to get to know me and understand how my life is and how I work so hard to function as best I can. I am hopeful that we are in the best place to find the right solution moving forwards….but whether that solution exists…only time will tell.

Dear body

I’m sorry I’ve given you such a hard time over the years. I’m sorry I’ve hurt and abused you. Starved you and neglected you. I’m sorry that I’ve hated you for keeping me alive. I’m sorry that I’ve hated you for how you looked. I’m sorry for all the times you’ve had to be stitched back together and try to heal without the nutrition and rest you needed. I’m sorry for the times we ended up in resus because I’d hurt you too badly.

To my hair – I’m sorry I spent years hating you for being ginger (it’s hard growing up as a ginger kid in the 90s), I’m sorry I spent years ironing you straight and hating your waves. I’m sorry I didn’t give you the nutrients you needed so there is so much less of you because you’ve fallen out so much over the years. Thank you for still being there – I’m lucky and I’m only now appreciating you.

To my face. I’m sorry for scarring you, for cutting you and hiding you. It’s not about you, it’s about other people but I’m sorry that you bear the brunt of that. Thank you for working so hard to heal every single time. To my eyes – I’m so grateful that you’ve given me the gift of vision which isn’t a given for my close family. I’m sorry I’ve damaged you by overdosing on medication that you don’t like. You’re doing really well despite that.

To my teeth and my mouth. You’ve done particularly well considering how badly I’ve treated you. I hated you because I had to wear a brace but now I get compliments for my straight teeth. Years of bingeing and purging has caused some damage but you have held up remarkably well and I’m grateful for that.

To my head. We’ve had our fair share of problems between us. I’m sorry for all the times I’ve beaten you up and banged you so hard until you were lumpy, bruised and concussed. You give me a hard time but you also keep me alive and don’t deserve that.

To my torso. We’ve had the roughest ride. And you work so hard to heal every time. I’ve hated how you look for as long as I remember and I still struggle with you now. I’ve spent so long trying to starve you away. I’ve starved you of food and water and overloaded you with alcohol and overdoses. Yet still you bounce back, it takes you longer nowadays to recover but you still manage all your jobs and never put up a fuss about it. To my liver – I’m sorry for the years I spent making you work overtime getting rid of the toxic alcohol and paracetamol and other overdoses I sent your way multiple times a week. I’m sorry about refusing to let the doctors help you and sending you into early liver failure. You’re still here and you’re still doing your job and I’m more careful about what I put you through now.

I’m sorry for setting you on fire. For the 4 months in painful bandages and the year in constricted pressure garments. Again, you’ve healed so well. I hated having to look after you during this time because it meant I had to look at you but that’s not fair because you were working so hard to heal.

To my legs. You’ve probably bore the brunt of my difficult times. The times when there were so many deep wounds in you that you couldn’t mend any more. The times where I undid all your hard work and stopped you from healing, cutting you open again. I’m sorry for not trying to help you heal and leaving you to get infected and painful. I’m sorry to all my nerves and all the damage they have acquired. I hope that you’re benefitting now from all the exercise I do now to help you stay strong and safe. I think you are because you’ve rewarded me with reducing the issues I had from the damaged nerves so I’m really grateful you would do that for me after all I’ve put you through. Thank you for holding me up and helping me do the things I love like skating and cycling.

To my feet. I tend to forget you’re there – mainly because I can’t feel you. But thank you for staying strong and helping my legs carry me. I’m sorry I get pissed off when you don’t do as I tell you but that’s my fault for hurting you. I promise I’ll remember to check you’re ok regularly ‘cos you’re not great at telling me yourselves.

Throughout all I’ve thrown at you you are still keeping me going, and keeping me doing the things I love. Thank you and I’m sorry.

Lots of love, Ellie xxx

I felt it was about time to do a blog about something which has been a large part of my work life during the pandemic. I’m talking about the Connecting People project.

If you haven’t heard about the Connecting People model – then I suggest you visit https://connectingpeople.net to find out more about this model developed by research and social workers at the University of York – designed to improve social connections. Then head on over to https://connectingpeople.net/sheffield-blog/ to see a variety of stories about social connections and the Connecting People project in Sheffield Health and Social Care NHS FT and in the city beyond. You can also listen to several brilliant podcasts hosted by the amazing Jess Gibson with a variety of people on the topic of social connections.

The statistics are shocking regarding the amount of social connections someone with Serious Mental Illness (SMI) might have. Often it is as low as 12 people – and a large amount of that 12 will be healthcare professionals rather than “true” social connections. And the quality of those connections is often (not always) questionable when people are unwell. I know for me, when I was really in the depths of illness a couple of years ago – my only connections were with the mental health world – whether that was professionals or other people in hospital/treatment with me, and this wasn’t always positive and often held me back. For me, part of the recovery process has been opening up my social connections to non-mental health ones, people who enjoy the same hobbies as me for example. For many people things like connections with drugs can be a huge issue. On my first hospital admission I was in with a lady who was withdrawing from heroin – she had thrown her phone and all her contacts away prior to coming in to detox, the only number she kept was her partner’s who was also detoxing – as she knew she literally had to cut her ties with that world entirely in order to move on and not be dragged back in. The quality of social connections is so important – a few really positive, fulfilling connections is much better than many negative, shallow ones.

In the past year, more than ever before, the world has woken up to the real impact that social connections have on ourselves as human beings. We suddenly found ourselves in a world of enforced isolation, desperately scrabbling at ways to get our fix of other human beings. For me, I’ve been pleasantly surprised by the effect the past 15 or so moths have had on my social connections. I don’t live with friends or family so I had a very real fear of not seeing someone close to me for months on end. So the beginning of the pandemic was anxiety provoking for me as it was for most people in terms of the fear of social isolation. Over a year on, and actually I think I’m in someways grateful for the effect the pandemic has had on my social connections – particularly the quality of them. Because we were so limited for so long as to who we could socialise with, and how many people and where, it meant that definitely for me, I found myself pursuing those social connections that nourished me, that made me feel better, valued, and left me feeling energised rather than drained. That inward groan to go to that dinner gathering you didn’t really want to go to is largely a thing of the past. Many people I have spoke to have said how they feel like the quality of their social connections has increased in the past year – even though the overall number of social connections may have decreased. I’ve found myself spending a lot more time with like-minded individuals and not having to be forced to spend time with people that drain all my energy or bring me down. I’m fortunate I guess that a lot of my hobbies are sports that can be often done outdoors, and also because I work in the NHS I was in the fortunate position of being able to continue working (and hugely increase the amount of connections I made there because of virtual meeting platforms). Another (much slower, but has definitely happened) consequence for me has been hugely reducing my social media use. I don’t spend my time aimlessly scrolling through newsfeeds – I go out and meet people or message them individually. How wholesome!

Anyway, back to the Connecting People project. This had been something that had been introduced to SHSC prior to the pandemic, but I think it was the pandemic and virtual platforms to meet that really started to allow it to gain traction. We’ve had over 50 people – service users, staff, carers and more from the Trust and beyond join our meetings in the past year. We’ve had members of staff from the clinical and corporate sides of the Trust, staff from the lowest wage bands right up to the top of the scale. We’ve had service users join us which has become a gateway to them becoming more involved in the Trust and volunteering with us, we have had service users join us from secure hospital, the community teams, when they are well and when they are not well. We have had academics, people from the voluntary and third sector…we don’t have any limits as to who can be involved in this project – you just have to be personally enthusiastic about improving social connections for people connected with our services (and yes, that means staff too!)

Something that is very much right at the heart of the project, especially in SHSC, is co-production. And I do feel we’ve given it a pretty good bash. Co-production is harder to do that people realise, especially in a top-heavy, hierarchical organisation such as the NHS. However hard we might try, we can’t deny the fact that we do need buy-in from those nearer the top. Things like wider spread of the project’s benefits and financial barriers are really affected if we don’t have the support of those people in the organisation with clout and purse strings – unfortunate but true. But what we can do is make sure the voices of all the stakeholders in the project – whatever their position – are heard. And I think we do a pretty good job of that.

Our meeting on Thursday was a fine example of this. We had actually been very close to having to postpone the meeting for various reasons, but I am so glad we went ahead as it was one of the most passionate meetings I have ever attended. Some of our meetings run with a more formal agenda – updates on what’s going on, presentations, activities around next steps and goals etc. but this one was an informal meeting (something which made my colleague, Amy (who works in the business part of the Trust) rather anxious!) and we kind of just let the conversation flow. The meeting was attended virtually by an almost even distribution of staff and service users. And what unfolded was one of the most intense but most vitalising debates I’ve seen in a while. I honestly wish we could have recorded it – or had us all debating in public at a Quality Improvement event – it really was a fine example of staff and service users listening to each other, challenging each other, holding each other to account and speaking truly honestly and freely without feeling like their voice was less important than anyone else’s. Every single person in the meeting contributed so much valuable experience – we had problems managing how many hands were going up on MS Teams! The topic ended up coming round to care planning – a constant source of contention and something that is nigh on impossible to get “right”. But I kind of think the topic was irrelevant – what was important was the quality, equality and openness of the conversation.

However, one thing we did agree on is, this is all very well, but how do we turn this enthusiasm and idea-making into actual, sustainable change. That can make improvements for staff and service users. And this is where we keep coming up against blockages.

One: We don’t “sit” under a specific department in the Trust – this makes it really difficult to fully gain traction and sustainability. This means if people who are contributing to the project by their own goodwill don’t have the time, leave the Trust or simply lose interest – the project stalls.

Two: We are not yet embedded across the Trust, we have had a significant impact on those directly involved with the project but how do we make this go further? We are not asking for the level of commitment shown by those currently involved from everybody – but some level of buy-in and thinking “oh yeah – this is quite a good idea” would be helpful.

Three: Finances – we have no funding and rely on the goodwill of all those involved, which is great, but unfortunately in this 21st century world is not sustainable.

Four: I think now everyone recognises the importance of social connections, but unfortunately they are forever falling to the bottom of the priority list when risk, medications, CQC inspections etc. get in the way.

We still have a long way to go I think in making social connections more of everybody’s business in health and social care. But we are making tracks and I hope it continues. This project has proved that even with a large hiatus and loss of staff involved at its core, there is still the enthusiasm for it to continue. I’ve thoroughly enjoyed being involved with Connecting People – its hard work, and sometimes I don’t have the time or the headspace or the motivation – but its meetings like last week that keep me fired up. You don’t get that sort of atmosphere in many places in the NHS, I wish everyone could get a taste of it. I think also, the fact that I am primarily a service user (though also a paid member of staff – but a low down one) and I’ve been encourage to take the lead alongside others has been fantastic. It has given me a lot of confidence in life and in work – its definitely improved my connections in the workplace for sure! It feels pretty good to be able to say yes I’m a service user, but I’m heading up this project for the Trust. It feels great to be able to be trusted with that.

I’m obviously not in this on my own – far from it. I just want to name a couple of vital people to the fact that this project was able to gain traction and be sustained in the Trust. Liz, who took the reins for the first part until she left the Trust – an OT by background she was the perfect person to pull this forward (and she can’t seem to quite leave us anyway!). Richard – Associate Director, who has been a huge support and advocate for us from higher up in the Trust throughout – its brilliant to have your passion for this project onboard. Amy and Jess who both took the business side of things under their wing, we couldn’t have done this without your organisation and knowledge! Emily and Jess, both who have given up a lot of their own time to help form this project and bring it forward – its great to have you both involved with more stuff in the Trust now too. And Martin from the University of York – one of the leads on the research behind this who has always been accessible and there for guidance and advice. And of course, I can’t name you all but everyone who has supported this projected at any point throughout – we have some amazingly committed, experienced and enthusiastic people involved and working alongside you all has been a privilege!