Madness and lies

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

I’m Fine

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.

A Bit Of A Blockage

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.

Ground Hog Day

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.

Needs Must – why paying attention to the hierarchy of needs is important in helping mental health service users to achieve their full potential

Most people are at least vaguely familiar with this diagram – Maslow’s Hierarchy of Needs. The theory being that we need the lower layers to be stable and consistent to build on the ones above.

My basic needs being met is something I’ve battled with consistently for at least the last half decade – in reality I’ve probably struggled to have my needs met for most of my life but because I had my basic needs covered – the rest of the pyramid appeared to be relatively stable, from the outside at least.

For the past couple of years I’ve struggled getting the lower 4 sections of my needs met. I can function to some extent if my basic needs are met – even if some of the higher ones, particularly psychological needs, are not met. However when those basic needs that everyone take for granted start to slide, things unravel pretty fast.

I’m at another point in my life where yet again my base layer of needs – Physiological needs – are not being met. And not surprisingly everything has fallen down around me. I’ve worked hard over the years to build the upper layers for myself – building friendships, working, doing things that bring me joy and boost my esteem – but the foundation layers have always been wobbly, so it doesn’t take much to bring them tumbling down.

Because I’m eloquent, generally fairly well dressed, have a job (even if I’m not working at the moment) and seem to have insight into my mental health problems, I often find that when people are taking my psychiatric history they skip out the more social aspects such as housing, safety and financial situation – all of which are major problems for me – but are presumed to be sorted because of the aforementioned eloquence. It’s the same equivalent as getting a really depressed person in and not asking them about elevated mood because they look so low right now. It’s really important to cover every area because you don’t know what might be lurking in people’s corners.

Currently, as a direct result of my mental health problems, I am not able to meet my basic physiological needs consistently – food (I can’t always afford it and I can’t heat things up myself so left without help I can only have cold food), shelter (I cannot access my house – even step beyond the threshold without support – renting a house is not the same as being able to access a house – and because my situation is so dire currently I don’t have any access to my house during the day times and don’t have access to my house 7 nights a week), warmth (comes along with the previous two – I’m stuck outside left to my own devices), rest (impossible when you don’t have somewhere to shelter and put your head down or even just chill out), water (I don’t have access to a toilet without walking at least 15 minutes (if places are open) or somewhere to wash except my cold outdoor tap).

Because my basic needs are not met, the next layer of needs – safety needs are difficult to meet. If I am unable to access my house, especially at night I am putting myself and my belongings at risk by sleeping rough, in my garden, being out and about at inappropriate times of night or being out and about in the day when its wet, or I am simply tired and don’t want to be out but have to be anyway. Add that to the fact that I’m in a significant mental health crisis right now – my security and safety are once again very compromised. Because of my PTSD I would not be able to protect myself from an intruder or attack as I go mute and freeze and/or dissociate very easily.

The next layer of needs are a complex one – the psychological needs. Some of these I am actually really good at doing myself (if the needs underneath are met adequately to support this). Belongingness and love needs – I make and sustain friendships very easily – however, at times when my other needs are not met – my friends are often relied upon by services to be my mental health carers and this is very damaging. However, because of untreated trauma, I have never (at the ripe age of 34) been in a romantic relationship. And I don’t think I ever will be able to unless I’m given the opportunity to address my trauma.

The next level, esteem needs is another complicated one. I have worked hard over the years to do things that increase my self-esteem as its naturally very low and because of being in repeated traumatic situations like this one it gets knocked down very easily. Prestige and a feeling of accomplishment is a very personal thing – sometimes I feel proud because I’ve slept rough and actually been independent for the night instead of having to rely on someone else – even if the experience was horrible. Other people might get a lot of feelings pf prestige over work promotions or buying a really fancy car, having children or owning a home. I get a lot of feelings of accomplishment through my skating and also through my work. But at the moment both of these thing are difficult to do because, quite frankly its impossible to turn up to the office and not be a total wreck when you’ve got the anxiety of a night with no shelter ahead of you. So once again this higher tier can’t be achieved unless the base layers underneath are adequate.

The top tier – self-actualisation, is something I definitely have not managed to achieve by any means in the lat decade. Achieving one’s full potential. I’m not denying that I haven’t made progress in some areas – less self-harm, more work and positive activities. But I’m hugely held back on this one because once again, nothing in the upper tiers is achievable if you don’t have the lower tiers nice and stable. I will never be able to move forward professionally – because I’m unreliable at work, because my basic and psychological needs aren’t met. I do have the potential, I know I do – I’m hard-working, fairly intelligent and good at making connections – but I will never be able to achieve my potential without the bottom 4 layers being dealt with.

I get a lot of people saying to me “oh but you have a job, you have so many friends, you have super fun hobbies – everything must be fine!” – but these mean very little, and in themselves are not achievable or sustainable if you don’t have a roof over your head and warm food in your belly. Everyone sympathises with the whole “moving house or separating is one of the most stressful things a human can do” thing – because in that process all our basic and psychological needs are jeopardised – even if that’s just for one day. Imagine if every day was as stressful as moving day, or the day you finally got a divorce. Thats what it is like for many of us with complex mental health problems who struggle to meet our basic needs every day. Whether that’s someone with memory issues who forgets to feed themselves or leaves the back door open by mistake. The person with depression who pushes away all their friends and family. The person with bi-polar who burns out because they haven’t slept for days on end. We’re all struggling to get those basic things seen to – so don’t be surprised when we can’t hold down a job, struggle to make friends or join a knitting group.

Work from the bottom upwards, slowly and steadily and you can help someone build a solid foundation upon which they can really achieve their full potential.

A Letter Of Apology And Thanks To My Body

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

Connecting People

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!

A Different Kind Of Crisis Care

April is a bit of a blur for me. I have not been well at all (and had been ignoring warning signs beforehand) but it finally got to the point where even I had to admit I was unwell. It was a bit of a perfect storm in terms of precipitating factors (which I don’t want to go into here but came from several areas of life and were largely out of my control), to be honest some of those things on their own would be enough to knock any bird off it’s perch – but a lot came at once and because I had been ignoring other warning signs beforehand (which was under my control but I’m having a hard time learning to cut myself slack and not try and paint a mask on) and it all kind of came to a head.

I carried on attempting to persevere – turning up to work, pretending things were OK etc. But by that point my body and my mind had already gone through the mill a bit and it wasn’t until I got to the point I was unable to remember being in various meetings at work, unable to travel from A to B independently, and even not be able to do the washing up, tolerate having my beloved ratty boys around me or remember to eat or drink, That I finally started listening to those around me and admitted I might need to take it easy for a while and look after my mental wellbeing. I am someone who lives with severe mental health problems every day but goes to great lengths to live a life of someone who doesn’t…and inevitably I can’t keep it up forever.

It’s been a long, hard slog – and one that felt like it was only going from bad to worse for a good few weeks. But I’m finally starting to piece myself back together – but tentatively. This has been a period of significant crisis – of which I probably haven’t had now for about 6 months since my life became a lot more stable and manageable. However, for the first time, we navigated through this crisis using the resources that were already available to me – but just more flexibly. I did not need intervention from the crisis team or home treatment, nor did I need to spend the night in the decisions unit, crisis house or a ward – and this is new to me but so much better. Yes, I did need medical attention on several occasions and the emergency services were also involved several times but these were all well dealt with and swiftly able to be handed over back to my normal care.

As well as being mentally unwell I have also struggled with the after effects of several head injuries which has resulted in an elongated period of concussion making me physically less able, struggling with memory, processing and managing tasks etc. This has been something I’ve found particularly difficult as I couldn’t do the things that help myself. Hats off to those that live and manage life with a more serious long-term brain injury. It really is hard.

So what helped manage this crisis period? I have several things at my disposal now that I have not always had in the past – or have had these things limited and therefore my ability to utilise them wasn’t great.

A safe place: This is the first time in a number of years that I’ve gone into a crisis and had a safe place in which to attempt to heal myself. A stable, accessible and safe home has not been a given for me until very recently. In the past year I’ve had the physical safe place but not always the means to access it. This time, I was able to use my support hours flexibly so my awesome team of Personal Assistants (PAs) could help me stay at home as much as I needed. This is so basic and something a lot of other people don’t even think about but for me has been something I’ve never had. It’s the absolute baseline of maslow’s hierarchy of needs and without this there is little point trying anything else. It makes me cringe when I’ve been in crisis previously and been sent back out into the cold with no safe place to be – told to “use my coping skills” and maybe offered a follow up phone call – how could anyone ever think I could successfully pull through a crisis without that? I spent years beating myself up because I couldn’t – but now I’m starting to realise that wasn’t OK and no one should have expected I could make it safely through crisis without a safe home.

Personal Assistants: OK so I know this definitely is something I am fortunate to have – but I only have them because basics like accessing home, cooking warm food and feeling safe are not possible for me without assistance. My PAs have been in place in some format for over a year now but this is the first time they’ve been allowed to help me as they see fit – previously they were under very tight restrictions as to how many hours they could work and were not guided by the mental health team or each other. Now they are well supported with external supervision, by each other and by my care co-ordinator if necessary – they are able to appropriately help me have access to the tools and resources so I can get myself back on track. In this time of difficulty they took more charge than they usually would on my daily life – making decisions about whether or not I had day shifts, cooking for me and making sure the ratty boys were looked after – all things that functioning Ellie can usually manage. This allowed me to free up spoons to help me just get through the day safely.

Mental Health team supporting flexibly: Particularly in the last year I have been actively told to not reach out for help from services (and indeed I stopped doing that even if it put my life at risk) and even been bullied and blamed for not managing in adverse situations. However, 6 months ago things changed and I got a new care co-ordinator and additional support from a senior member of staff. This also coincided with input from an OT from a charitable organisation to help with my eating disorder. With these people in place I have rarely had to ask for help – because it’s there if I need it. They all responded in a compassionate, non-judgemental and non-punitive way. I wasn’t made to feel like I was a crap human being, or guilty for how I was struggling. They discussed risk and self harm openly with me – wanted to find out more about how this was for me, and most importantly did not make me feel like I’d failed when risk did occur. I had phonecalls or appointments a couple of times a week that I didn’t have to beg for or explain myself to someone who had never met me before. Just a gentle catch up and helping me break my day down into small, manageable chunks. I was assured they were there, and to please ask for help if I need it. The OT even was able to come round and help me process my PA’s timesheets which were due and very complicated to do and something I just couldn’t fathom managing (which further freaked me out because I was worried my PAs wouldn’t get paid for their hard work). With this gentle, flexible, empowering support I did not need the input of any additional crisis services, and it has tailed off gently as I now don’t need it as much – this is different from the very sudden ending when working with Home Treatment for example.

Supportive workplace: I am incredibly fortunate that my management are more on the ball about my mental state than I am – encouraging me to take things easy and supporting time off before I would let myself do those things! They have been unconditionally supportive, kept in touch and allowed me to take control of phasing back into work in the best way for me. In addition, I did something I have never previously done and put an out of office reply on – specifically stating that I was taking time out to look after my mental health. I was incredibly anxious about doing this but the response has been people knowing that I’m not working at 100% ability, and other colleagues being incredibly supportive and welcoming on my return. Knowing that my livelihood will be there for me when I’m better helps me pull through much faster I feel.

Friends and family: I struggle in asking for help from anyone full stop, not just services. So reaching out to my social networks is difficult. However I have some amazing people in my life who are sometimes quite proactive and forwards with their support. Which I’m very grateful for as I’m often unable to ask or articulate that I need help. On more than one occasion I’ve had friends turn up because they suspected I needed help and was unable to call for it. I’m so fortunate to have these people in my life – and the others that just send gentle end encouraging messages or little gifts through my letter box. It all helps and it all means so much.

Going back to basics: Especially because I had a head injury as well as my “normal” non functioning, I really needed to strip life and the tasks I had to complete right back down to basics. This involved things like batch cooking so I could have the same lunch every day – taking off the decisions and food preparation so that I could concentrate on eating it. It meant literally only thinking about hour or even minutes ahead. It meant saying to people “I’m sorry I can’t do this for you right now, I just need to take time to concentrate on my mental health”…something I find incredibly hard to do but was important that I did.

Doing what I feel my body and mind needs without judging: I often don’t do the things that I know inside I need to do – because I place a lot of judgement on myself or worry about judgement from others. But I’ve really tried to listen to my body, my mind – their most basic internal needs and go with them. Yes that means I haven’t left the house without at least 3 cuddly toys in my bag and wearing noise-cancelling headphones in about 4 weeks. But it’s what I need to make the world less overwhelming and allow the smaller parts of me to feel comforted and safe. I even turned round and apologised to my colleagues last week because I’d just had several back to back meetings and I needed to curl up under my desk with my cuddly toys and grounding playlist. They didn’t bat an eyelid because they knew that by doing that I was assuring I could make it through the work day.

I’m still a long way from “optimum Ellie”, this has been a significantly difficult period and the precipitating factors are not resolved nor have they gone away. But I’m getting there and slowly learning to make the right choices – even if I’m embarrassed about them or worried about judgement.

I had a beautiful interaction with a consultant in A&E last week who had known me when I was a “revolving door” case several years ago. She reminded me how broken and hopeless I was back then, and although she could see I was going through a difficult period, she was amazed at the way I was managing things compared to back then. It felt good to tell her I was working and rarely came to A&E anymore. She told me that she was now the mental health lead for medics in the department and that it was people like me that had inspired her to keep combatting the stigma surrounding people like me in the department. That felt good.

I’ll get there. But bear with me for a little while whilst I work on myself for a while.

It’s All About The Timing

I speak a lot about my mental health. It’s my job. But on of the areas I’m less likely to talk about is my Eating Disorder. For some reason there is a lot of shame caught up in every aspect of my Eating Disorder and I tend to downplay its effect on my life, maybe because of my fears that people will turn round with the dreaded “but you don’t look like you’ve got an eating disorder” comment.

I do have an eating disorder. And I don’t think I’ve ever not had an eating disorder. The earliest memory I can place a time stamp on was when I was nearly 3 years old and it is to do with guilt surrounding food (specifically McDonald’s) … 3 years old. My main memory of my primary school years is sitting in orchestra worrying my legs were splaying out too far on the chair, complicated dressing contortions in the PE changing room as I was so afraid of people seeing my “fat” body (for the record I was a perfectly normal, if a little short and ginger-haired child), sitting in certain positions on the floor in assembly because I worried that having to sit cross-legged made my knees look fat, feeling like I was never good enough because I was fatter than all the other children. I never spoke about my feelings around weight – I kept all these thoughts inside until I was 17 and it started to manifest itself as an eating disorder – since then I’ve starved, calorie counted, over exercised, binged and purged, thrown up in secret in a desperate attempt to appear normal, I’ve abused laxatives, taken diet pills, restricted fluids and most things you can think of. I’ve been overweight, underweight and normal weight. I’ve had a resting heart rate of 37, blood in my vomit, blocked every public toilet in a Jordanian hotel I was staying in, gone to Morocco and eaten only cheese sandwiches, gone to Mexico and eaten only cereal. And that’s only scratching the surface. This eating disorder has affected every inch of my life for 2 decades.

My first career was as a primary school teacher. I used to look around the classroom at my 30 charges and wonder how many of them were silently having similar fears. I think that’s one of the (many) reasons I left teaching.

My eating disorder is totally separate to my other mental health problems, but yet it’s intrinsically interlinked with them all and everything in my life. I’ve always had an eating disorder and I believe I will continue always having an eating disorder. But it doesn’t mean that I’m always actively IN my eating disorder. I can go years doing pretty well, but I’ll always be vulnerable to sliding back under those quiet and enticing waves.

I’m nearing the tail end of about 5 months of OT support from SYEDA (South Yorkshire Eating Disorders Association – a local charity). And it’s pretty successful in the grand scheme of things. I hadn’t really thought I’d been doing that well (and I put a lot of any successes down to having support workers at home who do help me manage meals) until my OT reminded me of where I was in November when we started working with each other and I can’t deny there has been a lot of progress.

So I got to wondering why? Yes, this OT is great, she’s lovely, brilliant at her job and understands eating disorders so well and isn’t phased by my other mental health and life issues – which has a lot to do with it. But I have had treatment with other great professionals for my eating disorder over the years. So why has this one felt so much more right?

I’ve had a myriad of eating disorder interventions over the years. Inpatient, day service, specialist unit, support in mental health unit, support groups, OT, CBT and CAT and everything in between. But a huge difference with this one is timing. I realised things were starting to go downhill and spent a couple of months failing to turn things around and accepting that I did need help. SYEDA re-opened their referrals for Sheffield, I referred on the Monday, was seen for an assessment on the Friday and started OT sessions barely a fortnight later. Yes I was anxious, but I still wanted help at that point. The difference is that every other time I have received help it has been a long long time after I have needed (and asked for) it.

The first time I was taken to my GP as a teenager by my mum, We were told by the GP “it’s a phase, she’ll snap out of it”… I was just 18, I’m now 33 – not a particularly accurate prognosis. I then also fell down the “gap” between CAMHS and adult services, then I didn’t fit the very strict weight criteria. I had a few things here and there but I didn’t have substantial help with my eating disorder until I was 24. I then spent 4 solid years in one type of treatment or another which gradually got replaced by mental health problems taking precedent. I never fully recover. Just get to a manageable point. But I do believe, had I had help as a teenager I may not have had such a long battle for the rest of my life.

The last time I was in Eating Disorder Specialist services a couple of years ago it took 7 months and 3 failed referrals before I was able to access an assessment. When I was assessed it was at the point that I actually started CBT the week after. I worked really hard and the help I got from the service was outstanding but I never regained where I was before that relapse – which eventually turned into this current one “a second wave”.

The average time between a person seeing their GP for the first time with an eating disorder (which probably already comes a significant time – even years or decades – into someone’s illness) and them seeing a specialist is up to 40 weeks. People die in that time. I’ve known people who have died in that time. The infamous “postcode lottery” to health service access is no more pronounced than it is in the field of Eating Disorders. Young people being sent from the south of England to Scotland because it’s the only bed available is all too common.

Early intervention saves lives. And not just in the literal sense. It can give people their life back instead of spending decades in a miserable world obsessed by food.

Leading from every angle except the top…Participating in the Patient Leadership Training Programme

In January this year (2021 for those of you in the future), I took part in a Patient Leadership Training Programme – created and lead by David Gilbert – a person who has been working in the field of Lived Experience roles and patient leadership for a fair while (I’ll be polite but he’s been working in patient leadership for longer than I have been alive so he knows his stuff!). He created InHealth Associates http://www.inhealthassociates.co.uk 10 years ago to train, consult, research and champion patient involvement and patient leadership. He’s written a cracking book too (The Patient Revolution – How We Can Heal The Healthcare System) which is well worth a read regardless of your background of involvement in healthcare. The experience gave me a lot of food for thought…so I did a little blog about it…

I work in the NHS, in a mental health and social care Trust as a Patient Ambassador in Medical Education and Research, I also wear several other hats including in service user feedback and engagement and experience. For many years my only identity was as a patient, I was constantly in and out of hospital, labelled as a “complex case” (aka we don’t know what to do/don’t have the resources to help you) and was unable to hold down a job for more than a couple of months as I would become too unwell. However, I’ve been in this role for over 2 years now, and grown in skills and confidence more than I ever have in any other period of my life. I still am a “patient”, very much so – and one whose care has not always been great (to put it politely) and whose life is very much affected every day by my mental illness. During the 2 and a bit years I have been in my role I have only spent 2 months being able to live independently in the community – the rest of the time I’ve been in mental health units, homeless or sofa surfing – or for the past year, living in my own home with support workers who stay overnight and some of the day when I’m not out at work and help me be more independent. I’m fortunate to have the most amazing, understanding and supportive managers and colleagues, who – despite the complexities of managing someone like me with many adjustments that need to be made to accommodate me in the work place – have been unfailingly supportive of me, even through the tough times. To quote one of my managers “When we decided to employ someone with Lived Experience in the department, we didn’t quite expect the extent to which you would be living the experience”. A common misconception is that people using their Lived Experience in their role are largely “out the other side” and well on their way to the fabled “recovery”. I am very much slap-bang in the messy middle of my “journey”, I’m not fixed yet (is anybody ever?!) And nobody really knows how to fix me anyway. 

I’ve shied away from events with the term “Patient Leader” in the title until this point. It was probably nearly at the 2-year mark in my role when I finally stopped suffering from a crippling case of “imposter syndrome” and went down to a mild case. I hate to say that I was drawn into the NHS hierarchical way of thinking, and only started to consider the possibility that I could be a leader after I had completed some supervision training to begin to supervise service user volunteers working with us in our department. As a Band 4 role, I’m generally at the bottom of the pile in most of the teams I work with. So it was with some trepidation that I signed up for David’s Patient Leadership Programme – as I knew I fitted the patient bit…but did I have the right even to fit the leadership part?

I didn’t really know what to expect. So it was really helpful that a couple of weeks before the programme started, e-mails began coming round from the participants, introducing themselves, their background, their location (across the globe!) and a little behind why they were coming on this course. Several things surprised me from this initial introduction. For starters, I had seen the name of a patient leader who works in my area who I know fairly well – so I naively presumed that everyone else would be from relatively nearby too – at least in this country! But people on the course were from as far away as Canada, Italy and Ireland. Secondly, I had also naively presumed this was only in a mental health context – as my small brain can’t get my head around the idea of patient leaders in physical healthcare. I was wrong again – people came from a wide variety of backgrounds in physical and mental health care and many different roles and experiences in between. Thirdly, I hadn’t put two and two together about the slightly unpleasant timing of 5-7pm on a Friday, and the global nature of the participants until the first session where I could see it was light outside for others. I think lockdown life must have got to my brain more than I thought it had and I hadn’t even considered that this had to be organised to suit people across a variety of time zones! 

Despite the exhausting timing in the day – I can only describe our first session as invigorating and energising. I’ll be honest, by the time 5pm on a Friday came round on a dark, damp January lockdown evening – the last thing I wanted to do was engage my brain or be even vaguely sociable. But the vibe in the (virtual) room was definitely contagious and I found hearing about others’ journeys, battles and experiences with being involved in lived experience roles inspiring and fascinating. Even though we were a disparate bunch in almost every way, there was never struggle for stimulating discussion as we were all tied together by that strong bond of belief in the power of people’s experiences to influence change. I found that even though it sometimes felt like a lot of information at once, in the week following each session I would be going about my daily life processing and making sense of the discussions and debates we’d had. I started to see things in a slightly different (dare I say it, sometimes more critical) light.

Even though the course was only 4 weeks long and never having met most of the participants in real life, I felt like we’d all known each other a lot longer. I really appreciated the no-pressure atmosphere – you could take part as little or as much as you liked, verbally or using the chat function. We checked in at the beginning of every session (which is something I see in basically all patient/service user lead things but so rarely in sessions lead by others) which was really useful and there was a gentle understanding that if it was a tough day – just turning up was good enough. This made me determined to turn up even if time was pressed or the day had been hard.

I can sometimes feel quite lonely in my role – although we have a strong Lived Experience Practitioner (LXP) presence in my organisation which is really helpful and supportive, I am the only person working in the sort of role I do (many are Peer Support Workers) and in the departments I do. It can sometimes be really challenging to explain to people I work alongside that I belong to a “bigger being” than just me – just as a nurse may belong to a nursing union and have a certain agenda as a nurse that differs to that of an OT for an example – I have an agenda as part of a wider LXP movement to bring to my work as part of my role. Although I feel respected and valued in what I do, it can be hard to get your voice as an LXP heard and given equal weighting of that belonging to someone from a “registered profession”. I am an expert in what I do – just as others are experts in nursing, research, psychiatry etc. but it is harder for people to understand that this takes time and effort and commitment. Being an LXP takes huge amounts of self-motivation and self-discipline that is simply un-relatable for people in professions which are more established and where the boundaries are clearer and there is an unwritten understanding that you have to study hard/have experience to understand how to work in that line of work. For some reason, many people seem to feel that the work we do as LXPs is easy, that anyone can do it and learn it. This is definitely not the case and I’m seeing this a lot recently particularly around the reality of co-production and what it entails. This course definitely helped me feel less isolated – as there were people from a huge variety of roles – some of which were more similar to my own, and the experiences and barriers people had faced were different and the same all at the same time!  

One of the ideas we discussed in the first session was that of “finding your gang”. This really resonated with me, and when I went away and thought about it for a while, I realised I did have a “gang” – a group of allies who understood the world the way I did – and that actually it was a lot bigger, more wide-spread and had some unexpected characters in it! This has been a huge source of strength to me in itself (even if those people aren’t aware they are “in my gang”) over the past couple of weeks which have been somewhat stormy in our organisation for various reasons.

I find myself about 5 weeks out from the end of the course, with a new found respect for myself as a practitioner. And I am even using that term more. I’ve learnt to look at things from different angles and in different lights – sometimes I don’t like what I see now – whereas before I might have been blindly satisfied with it. I’ve found myself with a lot more conflicting arguments and debates in my head about what is right, what is wrong, what is adequate and what is tokenistic. But I’ve also learnt that time, and self-control is the best way to approach these things that concern me. Leadership takes time. Service changes take time. I think considering patient leadership is something that takes huge amounts of patience (something I’ve not always been blessed with a lot of), dedication, determination and a very, very thick skin.

Leaders do not need to be at the top. They do not need years of training and qualifications. Leaders can lead from the bottom or from underneath, they can lead alongside, they can lead covertly. Sometimes they can even lead from a hospital bed.

David Gilbert is @DavidGilbert43 on the Tweets and more information about The Patient Leadership Programme and related stuff can be found at https://www.inhealthassociates.co.uk