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No room at the inn: it’s not as simple as just asking for help

@Outdoorperscrip #MadCovidDiaries – 11th of April 2021

TW: Eating disorders, suicide, suicide methods

It’s taken me around 4 months since I left hospital to feel able to write this. Part of me was desperate for the involved services that treated me to acknowledge how their treatment wasn’t helpful and put me at risk. I made a complaint in January and had hoped that I could have an outcome to that so I could least include what had changed. I made the mistake of asking for my complaint to be dealt with informally, I wanted to meet with someone virtually to talk about what happened, I didn’t want to receive a faceless letter in the post with the usual words of ‘I am sorry you feel this way’ rather than ‘we are sorry for what happened’. Despite chasing my complaint up repeatedly, it’s not been dealt with.

There is no recourse if your complaint isn’t dealt with, you cannot speak to PALS on the phone as they only have voice mail. You could I suppose take It to the Ombudsman, but given their turnaround time is well over a year it feels somewhat futile as by the time it’s looked at, the detail of what happened is long gone.

Things started to go down hill with my mental health in about August of last year. I am autistic and have had an eating disorder for the last 4 years. I’ve been at various stages of recovery during that time. I’ve found the pandemic really challenging, I guess we all have in our own way. I lived in a constant state of anxiety last year, it began with anxiety around food, the panic buying and difficulties of getting delivery slots or having food items replaced became a weekly anxiety. I wasn’t able to go into a supermarket due to having meltdowns when people didn’t keep to the right distance. It’s been a year now since I’ve been into a supermarket.

Overnight I lost a lot of the supports that helped my mental health, my college course terminated suddenly, my volunteering stopped, I couldn’t visit the community café with my Mum. A year on and I’ve still not fully adjusted to losing so much of my routine that kept me mentally stable. The changing of the rules caused distress on every occasion, and effected my sleep. I started a new job from home having been out of work for a year and my daughter and partner both had to work from home too in our small house.

Neighbourhood noise broke me mentally as I felt like I couldn’t escape it. I felt overwhelmed in my house in a constant state of anxiety and sensory overload. The changing of the social distancing rules caused me difficulty as people interpreted them differently. Eventually the anxiety all got too much and I fell back into poor coping strategies, restricting my eating and over exercising. I set myself amounts of exercise I had to do every day and was often out before and after work, in the dark and on my own.

I was gutted I had relapsed into past unhelpful coping strategies that I thought I had escaped from. I felt I had let everyone down. I was mentally and physically exhausted. This led into depression. I self neglected, which is unusual for me. I usually value my routine and not doing certain things is very unusual. I wasn’t washing my hair or changing my clothes, my partner was doing everything around the house. I was isolating from my family and crying all the time. I would go to bed as soon as I could in the evening as I just couldn’t face being awake. I started not to care about my own safety, walking on steep ground, alone at night, above the flooded river. I cannot put into words how frightening that was. I started to take too much of my anxiety/sedative medication as I just didn’t want to be present. This made me often very detached from what I was doing, there were near misses with cars during this time.

I am seen by a mental health team in my community and have been lucky enough to largely remain seeing them outdoors apart from during the initial lockdown in 2020. When things started to slip they suggested an admission to the crisis house. At that stage I felt I could turn things around myself, so declined their suggestion. As things got worse though I realised I was really stuck in my unhelpful routines and became fearful for my safety.

I’ve never been to a crisis house before, but I have had a number of psychiatric admissions. Following discharge from hospital in 2019 I was encouraged by the crisis team to look into the crisis house if I became unwell in the future. I made contact with the crisis house when I realised I couldn’t turn things around and talked to them about what my needs were and what support they could offer. It sounded like it could help and they encouraged me to talk to my community team about sending a referral.

When I write about things I like to describe things accurately, but this will be a struggle as I was so unwell during this time things are now a blur looking back, I believe this is the correct order of what happened next.

My community team made a referral to the crisis house. The crisis house declined their referral and said it needed to be made via the crisis team.

Between each thing that happens next there was often an agonising period of time where I was suffering from distress and waiting for people to get back to me.

In the past I’ve struggled to engage with the crisis team. The crux of our difficulties is that I struggle with communication and find two strangers at once too difficult to cope with. When I am well I am better able to cope with situations I find challenging, when I am unwell it becomes far more difficult. Our difficulties relate to me requesting to be seen by just 1 person, often a lengthy debate ensues about whether this can be possible or not. On the occasion in 2019 it was declined, but they did then agree to see me in their work base on a solo basis (but not in my home). I have never presented as a risk to professionals. I have seen my CPN on my own for over a year and when in hospital I have always been taken on leave by 1 member of staff.

I struggle when I can’t understand the logic of a decision being made, why would people make a decision that makes someone struggle more or feel more distressed? Going back to last year I did agree to engage with the crisis team, despite my anxieties about past experiences. A member of the crisis team came on their own to meet myself and my CPN. We took a walk and I described how depressed I was feeling, I described how I was struggling to make the changes I needed to, to keep myself safe. I described walking to the point of hoping my body would give up, so I could just go to sleep.

After that point It was fed back to me that the crisis house were only taking people with a diagnosis of anxiety and depression, then a bit further along the line I was told that the crisis house was closed, I double checked this a number of times and was told throughout that it was closed. When I called the crisis house to check they told me they had only closed for a week and had remained open the rest of the time. I am still not sure what the true story was, but I recall how distressing it was not understanding why I had been told something different. The crisis house during this time still had it on their website that they accepted self referrals and referrals from community teams. Despite flagging up that this was incorrect, it remained showing this information throughout the time I was in crisis. My crisis plan also stated that a referral to a crisis house could be made.

Following on from that my community team then suggested a referral could be made to their supported living house, they talked about having a visit before a referral was made. This suggestion was taken off the table though. I do not know why as it was never explained to me.

As things worsened I had more contact with the crisis team, I asked for a solo visit, they arrived in a pair with masks and gloves on knowing that we would be taking a walk. I was overwhelmed by it being two people and fearful to walk around with them. They called me later that day and said I could see one person the following day, which did happen, but the day after it was back to it only being two people again, which I refused as I couldn’t understand what I had done wrong or why they had changed their mind. When you are autistic things being changed without a clear reason can feel deeply unfair and difficult.

I was asked if I would accept a voluntary admission to hospital by my community team, I said I would accept this. At some stage there was a professionals meeting, of which I wasn’t allowed to attend. Someone from the autism service attended the meeting, but didn’t speak to me first to hear what was happening from my point of view. I gather from my partner who asked for feedback at the time that they had suggested I move in with my parents or stay in an Air B and B. Neither of these were options, in terms of going to an Air B and B, I would have been away from my partner and daughter, during a pandemic, struggling with an eating disorder and feeling suicidal. I can’t think of a worse place to be without support. The outcome of the meeting was that if I wanted to have another crisis team assessment, I could request that. I was desperate and asked if they could do this. I think it took around a week to happen.

The crisis team came to my house and assessed me in my garden. I couldn’t let them into my house as I was too fearful they would spread Covid to my family. I can’t remember much about the assessment but they suggested I take antipsychotics or benzodiazepines. My physical health was compromised due to my eating disorder so I knew that antipsychotics would not be a good idea due to their effects on the heart. I didn’t want to take benzos as I’d had horrendous withdrawal experiences in the past. In general I was very anxious about starting a new medication as I was led by fears of an adverse reaction, having had a really horrible experience in the past. I recall them saying I wasn’t taking their advice. I remember this made me feel really bad. I asked when they would let me know the outcome, they said they’d go back and talk about it as a team and would get back to me over the weekend (this was on a Friday).

They didn’t get back to me and when I did phone them I was told they had decided they weren’t going to offer me any support and my care coordinator would get back to me the following week. It was so devastating to feel so vulnerable, but to have no way out. I was so depressed at this point I had made plans to end my life, I had made a specific plan and became obsessed with visiting the place I wanted to carry out my plan. I thought about what music I would listen to and how it would feel to just go to sleep and not wake up. I felt like I was a burden to everyone and there was no help. I was in a constant state of despair, clutching at straws trying to find a way forwards.

I came across a scheme called Shared Lives where a person who is autistic or has a mental illness can live with an experienced carer either long term or as respite. Often carers have been nurses or support workers in the past and have extensive experience of supporting people. This sounded like something that could help me as I knew with intensive help I may be able to get better. Shared lives is run differently for every local authority area and each scheme has different rules. The South West scheme for example is run by a charity and they will accept people from out of area but for other areas their local authorities or other private organisations run the schemes and they don’t accept out of area people. There is no single point of contact or data base so I had to contact all the individual schemes. Despite being severely depressed, the way my autistic brain functions is to hyper focus on things. I made a spread sheet so I could keep track of which scheme I’d contacted. Each time I received a rejection the little straw of hope slipped out of my hand. Covid made things more complicated as we were in tiers at that point and some carers had stopped accepting people. There were a few offers of suitable people, but then things changed because they had family move back home and once again hope had been taken away. I looked into whether I could pay for private treatment, but even if I used all my savings and borrowed from family I wouldn’t have been able to afford a month of help.

The dietitian I saw in the community asked about whether I would put my name on a waiting list for an eating disorder hospital bed. I didn’t feel like my primary difficulty was my eating disorder so was reluctant to do this, however as I was so desperate for help I agreed. I had the medical checks I needed to be put onto the waiting list, but when I saw the dietitian the following week they confirmed they had spoken to the ED service and they had said they weren’t taking anyone off the waiting list at that time and all beds were going to people so unwell they were being transferred from general hospitals. I was terrified as I knew my psychological health would break long before my physical health did. My plan to give up felt so inevitable and fixed in my mind. The only thing that was keeping me from carrying out the plan was trying to cling onto small bits of hope.

I’d ordered an excess of my medication and just completely snapped, I took it all and walked from my home down to a lake. I sat by the lake crying. I wanted it all to just stop. Strangers asked if I was okay but I couldn’t answer, I couldn’t ask for their help as there was nothing they could do. I walked to the river. I sat down and thought about how I’d not written a note to my family and how I needed them to know I cared about them and I was sorry. I called the crisis line as I wanted to tell them this. Somehow I was lucky enough to speak to someone incredibly kind and understanding. I hung up the phone and decided to continue walking but collapsed. When they called me back they encouraged me to stand up and to get myself back to the car park. They called my partner and an ambulance. I was taken to hospital. I was there nearly all night and as dawn nearly broke I was called in to speak to a crisis team and a Dr. The crisis team weren’t from my area but said they would pass on what had happened and someone would get back to me. They allowed me to go home. I said I didn’t want to live and couldn’t see a way out as I couldn’t get better. They said there would be help, I don’t remember any further help being offered.

I was told by someone to request a care and treatment review as I am autistic. This took a few weeks to organise. A care and treatment review consists of the Clinical Commissioning Group, a Dr or a nurse, an expert by experience and those involved with your care. The idea is to review care and make sure it is appropriate, it can be used to make recommendations to prevent a hospital admission or to aid a hospital admission. I can’t remember much about the meeting but I’d written what I wanted to say and cried my way through my descriptions of how desperate I felt. The panel recommended an admission to a rehabilitation ward that was associated with my community team, they also made recommendations of any future assessments being carried out by autism informed professionals and also a number of other assessments to support my needs. I felt they really understood and listened to how hard I was finding things and took seriously the risks that were there.

I talked with the dietitian about how they could support an admission to the rehabilitation ward, there had been some concerns about me not being able to make my own food, but they confirmed food could be provided. I then had another wait whilst my community team discussed things with the crisis team. I felt like at last there was some hope and a way out. I know I should have been able to make the changes I needed to myself at home, but I was so depressed and unable to escape my routines I felt there was no answer. I remember repeatedly just standing on the edge of the flooded river hoping I would slip, but not able to step in. I remember being on the top of a cliff, slipping and only a tree root saving my fall. I remember being on a muddy path, slipping and unable to stop myself taking a tumbling fall, I was just bruised, despite being covered in mud, I couldn’t stop my walking to go home. I remember on bonfire night not knowing it was bonfire night, going out for a walk and suddenly being surrounded by the noise of fire works going off either side of the river. I was alone and scared. I kept walking and walking and got myself lost. I had medication with me and wanted to give up. I called the crisis line and someone talked me into making my way home, they found where I was on google maps and stayed on the phone to me until I got home. That act of kindness kept me safe that night.

At some point the community team psychiatrist saw me in my garden. Again I am not sure at what point this happened, I believe after the care and treatment review had taken place. They did accept that I was depressed and suicidal. However they couldn’t arrange a voluntary admission they said afterwards because I was actively asking for help.

When I got the phone call from my care coordinator to say that the crisis team had declined the care and treatment review recommendation of an admission it completely broke me, it was the only hope I had left. Throughout the crisis I was repeatedly told by my community team that the crisis team ‘gate keep’ the beds. Everything was gate kept by people who knew me the least, who didn’t understand my autism, who didn’t understand what I am like when I am not depressed, who probably made judgements about how unwell I was based on having a job and a tidy house. All responsibility had been left to my partner to try to keep me safe. He was desperately trying to keep medication away from me and intercepting post. At this point in time I had accepted a benzodiazepine prescription from the community team and had also obtained it from my GP. This should never have happened as one should have a record of the other. When I was told there was no hope I articulated there was no point and I was going to give up. To which I tried. My CPN had called my partner, who had called my Mum. My Mum intercepted me and stopped me from going anywhere. The police arrived, then an ambulance. I don’t remember anything else. I was seen by psychiatric liaison, given medical treatment and subsequently moved to a psychiatric ward once I was physically stable.

I won’t describe in this blog how hospital was, but it kept me safe, stopped my routines and gave me the intensive help I needed to get back to a place to hope. I didn’t completely recover in hospital, but it got me to a place where I could contemplate recovery. Recovering has been an ongoing process since I left hospital in December 2020. It has not been without it’s ups and downs, but I am no longer severely depressed or feeling suicidal.

I am a different person to who I was last year. It scares me to think about all the traumatic hours I spent alone with incredibly dark thoughts. It scares me how vulnerable I was and how I couldn’t get help. I know I was a risk to myself at that time and that was induced by a mental disorder. It scares me that this wasn’t perceived as someone needing help. All of the press around at the moment about reaching out when you feel suicidal is difficult to hear, I wouldn’t want to put anyone off reaching out for help as there is some help out there as I’ve described about the crisis line supporting me, what’s difficult is that the help doesn’t extend beyond the phone help lines. If someone needs more intensive support, but is articulate, there is no bridging gap in the community. We have no day patient services and Covid has largely put a stop to the community led groups (not necessarily mental health related) which can sometimes offer informal support and routine which goes a long way. These groups stopping played a part in the deterioration of my mental state.

The discussions around mental health need to be about funding intensive support, whether that’s in hospital, in day treatment or at home. Crisis teams need to be able to adapt their service to meet the needs of all service users in crisis. There seems to be universal agreement that crisis teams need to improve and yet this isn’t being looked at. Understanding of the psychological risk of eating disorders needs to be better understood by crisis teams, the severe distress caused by exercise compulsion, restricting food or any other routines can feel utterly relentless. I’ve described it as feeling like you are standing on the edge of a cliff every day not knowing when you might fall. An eating disorder can effect capacity, when I was unwell last year did I have capacity to make unwise decisions? Would I make them now that I am feeling better, absolutely not. Does capacity even matter if someone is in so much distress they are risking their life? Should they not be protected either way?

I wanted my complaint to be heard as I worried about other people going through the same thing. I wanted services to think about how they would feel if our roles were reversed or to acknowledge that things hadn’t been done right. Maybe they think they were in the right, maybe I am wrong, maybe some day I will get a reply. Going over what was a horrible experience is not nice and going through a complaints process is re-traumatising, if I didn’t care I would walk away.

I wish they understood that I give feedback because I care.

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