I am so stressed and strained beyond the limit. I’m trying to care for my fiancé. I can’t. He’s yet again been discharged from A&E, this time with DVT having been told he could have a pulmonary embolism at any time. No plan in place. Vascular problems, tumour, hernia, unidentified lump in his stomach, knee operations, diabetes, hips going to need replacing… how much more, how much longer Lord? Why? I’m screaming and crying inside. How much worse he must be feeling. Again and again after every emergency and discharge we are no further forward. All the risk and pressure falls right back on us. I can’t do it. I’ve been overloaded for weeks or months. Way beyond the breaking point. I need it to stop. Already I’m drinking with my medication to try to get knocked out. I cannot cope with yet more emotion and pressure. Cutting, bingeing, purging, everything is worse. I have no mental health support now, nor does he, so what can I do? Time has slowed down. I’m hearing things. I need it to stop. Please God, I want to say I know you will answer and not turn away from us forever. But I can’t see You or hear You or feel You. It’s been a long time that way. Xx
WARNING – discussion of suicide, suicidal thoughts, emergency services
Am I expecting too much? I don’t think I am. Yet again I and my friend are being bounced around from service to service when he/we are most in need and so many opportunities for giving help missed. But I’ve certainly been made to feel I am asking too much and am a nasty person and more importantly, yet again my friend is left in avoidable danger.
In my local area, there is a specialist phone line for people in a mental health crisis, accessible via 111. This is a pilot, I believe, which may be rolled out in the rest of the country. According to information published about this crisis line, it is for patients, family, carers, friends and professionals, you can get an assessment of your needs, help, advice and visits, it is available 24/7, every day of the year. It is supposed to help you get more specialist help more quickly than if you have to go to A&E.
I phoned this line today because my friend is suicidal and today is a very “risky” day for him. He has specific plans and whilst there does seem to be a part of him that wants to keep going and not end it today, and I think it’s possible he will get through, I’m very worried about him. He was promised to get help from the crisis home treatment team, but he had one phonecall in which they told him to phone services if he felt worse. They have not assessed him or visited. The community service he was seeing haven’t put anything in place.
I wanted to get advice what to do and how to help my friend. I wanted to raise the alarm that he hadn’t had the agreed support and I was apparently the only person who is going to be with him today. I needed to ask some advice for me on how to cope because I’m getting very near another complete breakdown myself. I don’t know how to avoid me losing it and flipping out again when I want to be helping him.
So I phoned this line. First I was told nobody was available but brief details were taken and I was told I’d be phoned back in a few minutes. 1 hour 20 minutes later, having heard nothing, I phoned again. There was no record of my previous call. “You didn’t speak to me before, how would I know the details?” asked the operator. I went through everything again (painstakingly spelling every name and number about 6 times…) I was told that I had not been told I would be called back today. Er, yes I was, I was told I would be called back in a few minutes. “Oh no, we have 24 hours to respond.”
But we’re talking about someone potentially about to end their life here. Don’t you think that might necessitate an urgent, even immediate, response?! Isn’t this a crisis line?!
They made no assessment of the situation, would not listen when I tried to tell them the home treatment team input had not been delivered as agreed, gave no advice except for if he attempts to end his life, call an ambulance. What about any support that might stop him getting to that point? What about any professionals putting help in place? At the very least, any advice to me? At the moment I seem to be the only person doing anything today to keep him safe. I have no training, I do not know how to help him, I am ill myself and close to breaking point. I am terrified what is going to happen and whether he’ll still be here in the morning.
I tried to impress the urgency of the situation and that a call at some point within the next 24 hours was not soon enough seeing as he planned to end his life today. The so called crisis line told me that I simply had to calm down, that I had to realise they have plenty of other referrals to deal with, that they are very busy and it is not very nice for me to suggest they aren’t doing anything (not sure how I did that?), and when I insisted on speaking to a manager she continously talked over me and threatened to end the call. I was told that they had told me about plenty of other ways to get support. They had not suggested one single thing.
I would expect more from a crisis line. I would expect immediate response when someone is suicidal. How can it possibly be okay for them to say, sorry we’re too busy? I would expect the promises in their literature about getting assessed, supported and visited by mental health professionals to be fulfilled. There is no mention in the literature that they may do nothing for 24 hours. I would expect professionals to be ensuring my friend’s safety today, not me. I want to be there for him, I want to listen, be a friend, offer comfort and encouragement. I am happy to stay with him when that helps, as I will today. But I should not be the only one doing something to stop him ending his life. Is it really too much to ask? I don’t think so. He has asked for help and so often been turned away. This has been a pattern for him just as it was for me in my care. If harm comes to him today in my opinion it will have been completely preventable. That is not to blame services for the state he is in, but they have failed to provide support they agreed to, could have and should have.
I don’t know why I keep on having some hope in services that they’ll do what they promise. I’ve had enough demonstrations to the contrary. I’ve given up on help for me but I don’t give up so easily for a friend. I suppose it’s natural to have some trust in those we believe are there to help and protect us and that instinct doesn’t disappear quickly even when it’s proven wrong. If I could expect the total absence of support it wouldn’t be so distressing. I’m not looking for sympathy though it probably comes over that way. Just very angry, bitter, lost and scared.
My friend has been admitted now (see my last post).
He was in much more danger than I realised. I’m not putting specifics to keep confidentiality and to avoid any unhelpful triggers for readers. He only told me after we had parted earlier. He didn’t want me to know and be scared. Then he went to A&E but didn’t go in. He was scared. He felt huge guilt too I think. He was confused and distressed and we lost contact and he was walking or lost in the hospital grounds I think. I got there as quickly as I could in a taxi phoning security to search for him. Thanks be to God for Security whose officers tracked his car. Thanks be to God that he did make it into A&E. I still don’t know exactly how.
Again I didn’t want to leave but he really preferred I did as his anxiety about hurting me (which he has never done) was so high. I spoke with the nurses and we all agreed is best for me to come back in the morning. He’s being cared for…he’ll be on a drip…he’s not alone…
I’m scared. He was so weak and drowsy and in and out of consciousness / awareness.
I’m hurting. Shaky. Scared. Exhausted. I don’t know what to do with all I’m feeling for him and the overload in my mind and chest. Hurts to breathe.
I know I have to accept right now I can’t do anything. The doctors caring for him can do something. God can do… more than something. Still I feel so horrible for everything I can’t do and all the good I see in him where he only sees what he calls poison.
I place him in your hands dear Lord Jesus. Hold him please tonight. Whatever happens now.
When I signed up to the programme of treatment I am in at the moment, it was to include weekly group MBT therapy, fortnightly individual therapy, monthly care coordination and support available from a duty team.
With no warning, monthly care coordination has been stopped and changed to quarterly. Having expected to see my care coordinator yesterday as we’d previously booked, this was cancelled and my next care coordination is not to be until the end of September, which will be about 4 months since my last appointment.
I could write a lot about how badly the actual communication of this decision has been handled. Actually I did but I deleted it. It probably doesn’t do anyone any good, not me or the service or anyone else, to shoot off into an angry tirade. I’ve been trying to process this through since we (ie all of us in the therapy programme) got letters telling us a few days ago. My emotions are pretty out of control and shooting to extremes at the moment independent of this which is making things harder – ironically, partly because there is so much going on all across my life and I can’t hold it all together; I could have really done with some help from my care coordinator. I’m trying not to just rant in anger here. However, I do think that some of my feelings are shared by other people in the programme and I do think this reduction in appointments is a much greater loss than the hospital realise. There is a huge gap in care here and it’s getting wider.
We weren’t involved in the decision. We were informed afterwards in an impersonal letter. We were informed that this would be best for us. There was nothing personal about the decision. Surely everyone’s needs in terms of care co-ordination may be different, at different times in their therapy, according to what’s going on in therapy, their health across the board, and all areas of their life? The approach being taken isn’t responsive. It’s just a blanket decision.
My views are certainly being influenced by what I observed and experienced when I worked in mental health services in the same mental health trust in which I’m now treated, but I wonder if the source of this reduction in appointments is actually largely to do with funding cuts and staff shortages? Conversations I’ve had with my care coordinator have given me more than an inkling that my suspicion is correct. If this is so, it would have hurt a lot less if this explanation had been given plainly, rather than it being couched in claims that the service think it’s better for us to have less coordination of our care.
Leaving this aside, nobody actually discussed the matter with us whilst deciding what would be best for us. We didn’t get to give any input about why care coordination is important for us, the help we need, the effect this withdrawal of support would have, what our needs are and how they might best be met. We committed to the therapy programme expecting one thing and now this has been changed. We’re expected to stick with the programme and commit to it but they are free to change it how they choose. This is by no means the first time this has happened and what we have trusted in has been changed or taken away. Support we desperately needed, which was insufficient anyway, has now been withdrawn further.
All these things combine to make us feel hurt and powerless and unheard by those we should be able to trust and undeserving of support. I posted yesterday about how when I discussed the changes on the phone with my care coordinator (after I’d chased several times for any explanation of how the decision was made and what’s happening in practice with my appointments going forward) he told me the service thinks this is the best way to challenge us to be more independent, and how much this hurt and how little the service we should be able to trust actually appreciate what we are facing.
Separate from the emotions this brought up, the withdrawal of these appointments doesn’t just affect the appointments themselves; by the very nature of what care coordination is meant to do, it will have an impact on our wellbeing across the board and I think this is where the proverbial baby well and truly has been thrown out with the bath water. It seems the clinicians who have made this decision do not realise what a loss this will incur.
First, on an immediate practical note, it will have a knock on effect on our therapy appointments. We have been told that the clinicians have decided it is most appropriate for us to get help in therapy appointments rather than care coordination. The focus of a care coordination appointment is utterly different from a mentalisation-based therapy appointment . Therapy appointments focus on emotions and interpersonal situations, looking in depth at particular relationships and specific interactions, our emotions and thoughts and our understanding of what is in our own and each others’ minds. It’s not so much about events and information and our circumstances as focussing in depth on our emotional experience and thought patterns. This is totally different from what is covered in care coordination – such as building a care plan, reviewing mental and physical health, looking at input that may be needed from other health professionals or support workers, looking at social and financial problems and stability, monitoring risk and safety issues, communicating with the range of professionals and others involved in someone’s care… the list goes on. If this is now to be squashed into the therapy appointments, either the time for therapeutic work will be greatly reduced or the problems we needed care coordination for won’t be addressed.
This is all the more important since the length of time for which one can be seen in the service is now strictly limited. The service was set up to be a lifelong service, recognising the fact that we may likely need help outside of particular therapy programmes across many years. Now this has been stopped and after we have completed a particular therapy course we are discharged whether or not we are coping or safe or recovered. When time is limited and so soon we will find ourselves alone again or at least without specialist support, whatever state we are in, it’s all the more important that whilst we are with the service we can get help pulled together across all the areas of our life that our mental health affects and that affect our mental health.
And these areas are broad. Several of us in my therapy group, myself included, have multiple mental and physical health diagnoses. Most of us have many unmet needs at any one time. Some of this is because of rules that you can only be seen in one service at one time. I’ve posted before on how unfair that can feel – for me one thing this rule means is I’m not allowed any help with my PTSD and trauma following the abuse I’ve been through, because I’m being seen in the PD Service. I know other people who were forced to choose between being treated for their life threatening eating disorder or their personality disorder. Multiple mental health diagnoses are often closely related but I, and I’m sure many others, have had big difficulties trying to find the way through the care and treatments they need and I’m regularly promised help that is then the next minute taken away. Someone needs to pull all this together and make sure communication happens and that help promised is actually delivered. It is too hard to do this on your own when you’re seriously ill and all too often you are bounced between different services, each telling you that another service is meeting your needs when actually nobody is.
Physical and mental ill health tend to cause disturbance and instability to a lot more than health. Just a few examples from my own experience – and all these are shared by other members of my therapy group – are losing your job, being made homeless or having to move from your secure home, having nowhere stable to live, having no money to meet essential expenses of food and rent and bills, falling into debt, trying to navigate the system to claim sickness benefits or help with housing costs whilst working part time – and being met by mistakes and delays at every turn and waiting weeks on end to receive any money, consequent trouble with utility companies, landlords, over or under payment of tax and Benefits, filling out form after form, having less and less contact with friends and having no resources (financial, or in terms of emotional strength) to keep in touch with the little positive things that can keep you well, relationship breakdowns, addiction, crises, losing control and ending up in trouble with the police or other involvement from emergency services… I could go on and on.
It just isn’t possible to sort out all of these things on your own especially when you’re struggling with the daily pain of the BPD itself. You desperately need someone to get you access to help and guidance, to be familiar at least to some extent with the systems you’re struggling through and to know what help is available and refer you there. This help has never come, for me, from the PD Service, and with so little care coordinator input going forward, it’ll be even scarcer.
Yes, a lot of these things are parts of everyday adult life but the fact is by the time most of us eventually get seen in a specialist service like mine, we have struggled without the help we need for years upon years and are very near the end of the road. (Potentially, very near ending our lives, or already having reached that point because there is nothing but pain, dark, utterly spent, utterly trapped, self disgust, I could go on…) Yes, we have to be able to function independently. But we are silently screaming how right now we can’t. We need help. We desperately need to be heard that we need help. Every time we have tried the very hardest we can and there’s yet another loss, obstacle, more and more piled on us, our risk increases and we are less and less able to be independent and more and more locked into our compulsions to overdose and self harm and try to numb and control the utter desperation and silence the painful scream for help inside us. If someone hears us, guides us, gets an understanding of what is happening across our lives, pulls the pieces together and gives some continuity, as our care coordinator could, then we can start to gain strength and start to find some kind of stability that might eventually allow us to heal.
I am incredibly fortunate that I have a support worker (from a local social service, not from the NHS) who is helping me with so many things that I’d have hoped my care coordinator and/or support workers from the PD Service would have done. The response from the PD Service was to brush me off saying everyone has to deal with these things and I did not qualify for any help and one appointment with a care worker who did not know anything about most of the areas in which I needed help. Thanks to my current support worker, I have not been evicted by my landlord, I have been helped to fill in the complex application forms for disability benefits, I have had support to go to assessment appointments, I have had help learning to budget, I have been able to access the correct advice and information from all the services involved (housing benefits, the council, the Jobcentre, disability services etc), I have someone on my side who understands the difficulty I’m going through at the moment in the police investigation into my abuser, and I have some social support which will help me use my time constructively to keep getting better and eventually learn how to get back into work.
In no way did the lack of recognition, lack of coordination and lack of support I received from the PD Service make me better or more able to function. In no way has having a support worker made me less independent or worse. I am now self harming much less and have not overdosed for weeks. I’m able gradually to do a little bit more and then more, because I have some sense of stability and safety and someone who believes me. With his support I’m not alone going through the things that distressed me to the extent that I couldn’t cope and could only hurt myself.
This support is desperately needed. It is very sad that it is so hard to find. Given that the therapy programme is so good, and I know it is such a privilege to be able to undertake it, it is sad that the support towards staying safe and being well and stable, is so lacking. It is much harder to grow and make use of the therapy from a place where you don’t feel safe or heard.
Perhaps I’m overreacting. Perhaps I’ve had an unusually bad experience with my care coordinator or when I’ve been in crisis. Perhaps I’m incredibly dependent. (Well, I think I definitely am.) Probably I should focus more on the fact I have the support I do. I know many services have much less support available. It just seems to me like a big and widening gap and that things could so easily be different.
If I recover enough to ever work or volunteer in this field, I’d like to work on trying to bring together patients’ access to the support that’s out there and bridge the gap of all the unmet needs that are stopping us from having a stable life whilst we’re working through our therapy programmes. I’m sure this would increase people’s security in their recovery.
The service where I am in therapy at the moment has suddenly (from our point of view as patients at least) changed our care coordination appointments from monthly to quarterly. Less than quarterly, in practice. I was supposed to see my care coordinator today. The appointment has been moved to the end of September. This will be 4 months since my last appointment at the start of June. This comes at a time that I desperately needed care coordination and when everything feels on the edge of fragmenting.
I am furious at how this change has been made, for myself and for other people in my therapy group. I’ll post about that next.
I spoke to my care coordinator about it on the phone and one of the most hurtful things that he said was that this has been an “ongoing clinical decision over several months” and they think this is the best way to challenge us to have more independence because instead of having a care coordinator we’ll have to take the initiative to sort out our problems. I’ll set to one side for the time being the hurt caused by having been kept in the dark, not warned, let alone involved, in the “ongoing decision”; the apparent total lack of awareness of why care coordination is needed; the assumptions about knowing what is best for us….
One thing that really really hurt and I wanted to scream and felt utterly betrayed again by the people supposed to help me and understand me was – we do not need a test, or a challenge, or to be forced to be “more independent”. We desperately need to be heard and to get help. I have been in this service since November 2014 and I am still screaming inside and falling to pieces and trying to be heard over the same issues as when I first came to the service. We have always been on our own. We have had to do everything with no help and knowing everyone will leave us. We just start to trust this service and dare to think perhaps they’ve understood a tiny bit of what it’s like, and then we get proof it was all an illusion. Never in my whole time with the service have I felt safe, been kept safe.
And here comes the thing it’s so very shameful and not allowed to admit. Sometimes – even a lot of the time – I don’t want to be independent. I want to be heard and I want to be cared for. The abused and terrified and frightened child inside me has never ever been heard or believed and has never been cared for. I have fought and fought on my own and I cannot do it anymore. I need help. I can shut up the child for so long by cutting and starving and drinking and overdosing. But there is a point of breaking. And I’ve passed it. I’ve never been safe. Never been safe from my abuser. Never been safe from what goes on in my mind, the pain, the hallucinations and flashbacks.
I know these feelings aren’t allowed. We have to take responsibility. We have to be independent. We have to be adults. We have to function.
Is it so very wrong to want to be kept safe? To want someone to hear and know how utterly painful it is? To want someone to care for us? To want someone to stick to what they agree to and not trick us, not tell us they understand but then leave us alone when we most need help? If I am not independent is that really the most important awful thing? Why should I not be allowed the help I need because it’s so desperately important I be independent? Nobody kept me safe as a child. Nobody cared for me. Over and over again my abuser tricked me and left me powerless. The service I should be able to rely on now in my treatment, to understand and help me, makes me feel the same. In no way is it an empowering kind of being made independent. It’s being pushed away and tricked and all the cuts made deeper still.
I’m ashamed to admit it but I want someone to care for me. Before I can start to get any more ability to cope on my own I desperately need someone to understand how loud I’m screaming and how much it hurts and not to leave me, hold me and stop me from falling to pieces, stop me from losing all grip on reality because the pain and terror is so utterly consuming, hold me and allow me not to be okay. Then maybe I might be able to take very gradual steps to take back responsibility for one thing at a time. I don’t need to be tested, tricked, pushed away, not believed, not heard, used over and over again and taken to the most vulnerable desperate point then what tiny little things we hoped in taken.
I am full of anger and pain and rage at being tricked and used all over again.
When I first started this blog, I was certain that I was going to keep it anonymous. By “anonymous” I mean, for example, I don’t use my full name, I avoid posting anything that would indicate the town I live in and I do not post photos of myself or my loved ones. Recently, I’ve been wondering whether I might change my approach slightly, for instance, disclosing a little more about me, or sharing photos sometimes, or no longer refraining from talking about local groups, services, activities etc that might give away where I live.
It’s a hard decision. I was talking about it with my friend S who suggested “Why don’t you ask other bloggers what they think?” I thought that was a great idea.
So, I’d like to ask you a question: what do you think about blogging anonymously versus revealing personal details? Was this a difficult issue for you? What led you to choose how much you reveal and whether you write anonymously? If you started your blog anonymously but later decided to share more about yourself, or vice versa, what led you to that decision? If you’d like to make any comments I’d be very grateful. Thank you.
I’ll share a few of my own thoughts on the decision I’m trying to make.
Ironically, it’s partly because some of what I post here about my emotions, experiences and relationships is so very personal that I refrain from sharing personally identifiable information. Many of the experiences I talk about are very painful and intimate, especially those from my childhood. If someone I know as an acquaintance or colleague (rather than a very close friend) came across my blog and learned what had happened to me then I might feel really uncomfortable to say the least. At the start of my blogging, anonymity let me write more freely. Also, I didn’t know what kind of reaction I might meet with. Allowing myself to be identified could have made me vulnerable if I encountered unpleasant or harassing “followers”. In fact this hasn’t happened at all; since I started my blog I’ve been very blessed to have caring and supportive visitors to my pages who have become friends and that’s a huge gift. THANK YOU! It’s now partly because you have become friends that I’d feel comfortable sharing, and indeed would like to share, a little bit more.
However I also know that if I were to be identified my blog might affect not only me but my friends, family and the professionals who care for me.
I’ve written about relationships breaking down and hurt I feel. I’ve shared sensitive experiences that involved others, such as my childhood abuse and relationships in my family when I was growing up. When I mention someone else I never give their name, only an initial sometimes, but if I were to be identified through my blog by someone who knows me (say, through work or a friend of a friend) then other people I’ve mentioned in my posts potentially are more likely to be identifiable too. It’s a small world, as the saying goes, and I don’t have that many friends! 😉 My friends and family may not want to be identified, or they may be upset. The anonymity of the internet does not give me the right to be horrible about people and I try hard not to write personal things about other people or things I wouldn’t say to the person directly. However I’m inevitably only writing my own experience and perception. In another person’s view it may not be balanced. On the flip side of this, I try to write positive things and express gratitude about the good friends I do have in my life and it would be nice to share more of that.
As well as considering my friends, I have to consider the hospital and my doctors and the therapy programme I attend. There aren’t many specific personality disorder services in the UK and if I say where I live, which hospital I attend will likely become clear to anyone else vaguely local with knowledge of PD. I might worry about anyone making a judgment about the hospital or therapy on the basis of what I write. It’s just me, after all.
Equally there is a lot about the support I get that is great and I would like to share this to help others. Having experienced at least 15 years of mental health issues, slowly I’ve come across sources of support and services that can really really help, some in times of crisis and some day to day. A lot of them are not easy to find. I’d love to write about them and how they’ve helped me, in case this in turn helps others and because I think they deserve recognition. So far I’ve held back so as to avoid revealing my location. Perhaps that is over-cautious of me.
You get the picture that I’m in two minds about this at the moment!
There have been several cases in the news recently, in particular two this week, of children suffering unfathomable cruelty at the hands of their parents / caregivers. Much has and will be made of the failings on the part of social services and social workers. How could the horrors and suffering go unnoticed and why were concerns not followed up, staff nor taking a more joined up approach, so the children could slip through the net?
I don’t doubt that there certainly were failings in the services. I’m not denying that. I can’t imagine the guilt the workers involved in those two cases are feeling right now. I’ve suffered myself and so did my mother and so have several other people I care about, because of failings in the organisations that should give support and protection, which let us fall through the net without intervention in times of crisis and without promised follow up or communication across different services. Sometimes the services involved have seem totally unaware of the harm this causes and unwilling to take responsibility. That hurts even more. Fortunately I have never suffered anything approaching what the children in this week’s cases did.
I’m not trying to deny that there were failings and I don’t want to hurt anyone who has been through similar experiences. However I think the somewhat understandable jump to publicise the blame attributed to the social workers and agencies masks some important points.
First, the perpetrators of the terrible abuse the children suffered were their mothers, father’s and family members. That’s the greatest horror. It is terrifying that as humans we are capable of inflicting such suffering on another, let alone on one of our own family or our own child. It’s particularly horrific that a mother can do this to her own child. It so negates every good and nurturing thing a mother is. It means no relationship and no home is immune to evil actions and absence of love.
Secondly, that is such a frightening fact and we want to know why. How and why can a person do that? What does that mean about what’s possible? About our human race? That sounds like an overly broad concept really. But I think it shakes us. Can we conceive that our world is one where what should be the safest and most protective relationship, mother and child, is used to inflict fear and hurt and pain? We don’t want to. We at least need some explanation. It’s easier to label the failing of a particular social worker or agency, because that we can understand. That we can name. What brought the abusers to use their own children that way, we can’t.
Thirdly – and this is something that’s hard to explain but significant to me as a survivor of childhood abuse – these horrific abuses can and do happen in secret and undetected. Trying to come to terms with what happened to me and questioning over and over whether the things I can remember done to me are true, I’ve often doubted myself and told myself it must have been my fault or I must be mad and inventing it all, because at the time nobody else realised what was going on and nobody intervened and people thought my family was normal (er okay maybe not but they didn’t often suspect the full truth). These two tragic cases in this week’s news show the awful fact that abuse much worse than what I suffered can indeed continue in secret. Therein lies the abuser’s power to control, manipulate and deny.
Fourthly, no more resources are coming for social workers and care and protection teams at the moment. The little glimpses I’ve seen from my work in hospitals, psychiatric services, care teams and so on has shown me loud and clear that there simply are not enough hours in the day and not enough people on the ground to have the contact and communication and time to spend directly with children, families, patients in need, as well as following the ever more extensive proformas and completing paperwork that is required to meet the rules and regulations (which are supposed to ensure good care is happening but at the same time take you away from doing it).
This is no new or ground breaking feeling. I think most people in nursing or caring services have been saying this for years. But it’s still frighteningly swept under the carpet and denied by those in power. When I worked in a service that supported teenagers and young adults with mental health needs and social support needs, I would take the minutes of clinical team meetings. In one such meeting, changes to documentation for care planning and recording were being introduced, which would require nursing staff to (a) spend much longer away from patients, sitting at computers completing databases and reports and (b) in many cases require nursing staff to spend already limited professional development time on training in IT packages, not in patient care. Of course, the aim of all these whizz new care planning systems was supposed to be a magical improvement in compliance with regulations about good care. However, nobody could answer who was going to be delivering the care during the time that the already over stretched nurses were completing the compliance paperwork. I wonder whether there’s a box in the risk assessment screen to record the increased risk caused by the fact the nurses and carers are filling in the [expletive deleted] risk screen instead of assessing the patients? 😉 Time and time again there was no answer to this impossibility. In that meeting, one or two nurses directly asked, how in the same shift with the same staff, were they to fit in their work with their patients, as well as completing the new compliance activities being introduced. How could they do both? Which was to go when the time ran out? In my eyes the response was appalling. The nurses were told that was an unacceptable attitude to display and there was simply no choice and the compliance work was to be done. This came from a senior clinician who I had greatly respected and her response was totally at odds with her usual very reflective approach. Of course I don’t know the history with that particular member of staff who asked the questions and perhaps there was more to it than that, but there seemed a forced denial of the impossibility of continuing to provide good care and the level of presence on the ground with those we are caring for, which is so important if we are to prevent tragedies like the children who slip through the net where abuse and suffering goes undetected.
I left the service I mentioned because more and more changes were taking clinicians, and support staff like myself, away from being able to maintain the personal contact with patients. (I’ve since regretted leaving, I’ll admit.) Clinicians left too, at least in part due to stress and sadness around similar issues. They were a great loss to their patients, in my opinion.
A little later I worked a temp cover role as a secretary for the legal team that supported my local county council’s child protection services. Round about this time I thought about training as a social worker. I didn’t in the end. I thought I’d find far too many situations where my hands were tied and too many times bureaucracy stopped me doing the good that was needed.
I cry for the children that suffered and for those who so want to be present on the ground to help those at risk but who are taken away and whose voices are silenced when they highlight the lack of resources and impossibility of meeting the demands of keeping children safe in the field, and complying with everything that’s supposed to be ensuring children’s safety. One thing is sure and that’s that it is far too easy to be silenced – again both in the case of the victims and the carers pointing out the shortage of resources to help them. Let’s keep on speaking out.
TRIGGER WARNING: fairly massive warning on this one that this post discusses suicide and self harm and issues around getting care in crisis…
Yesterday I was met with one of the most punitive, ignorant and dangerous reactions I have had from a medical professional. I wonder if people who react like this actually do not realise the genuine danger patients are in and how much further into danger this kind of reaction pushes us.
As I write this post I want to be clear that I am now safe and have received help and I am not posting this to alarm or worry readers about me. I’ve been seen in emergency services and eventually had very supportive care, which I will post about in due course. Please don’t panic about me. I am now safe and have had help. I just think what I experienced earlier is a massively dangerous issue that needs to be highlighted.
Yesterday I was absolutely unable to cope. The pressure of my housing situation, financial problems, threat of losing my flat, trying to discuss things with my landlord, my physical help, repeated errors from benefits services and other supposed sources of support, the lack of help over the past 5 months or so when I’ve been at my lowest points, the voices and flashbacks and nightmares – everything boiled over and again I was in the place where the pain and emotions and loss and guilt blocked out any ability to carry on.
I lost it and I was at the point of trying to end my life. I knew how I was going to do it. I had tried and tried but had nothing left.
I spoke on the phone to the GP Surgery. Somewhere, I guess some part of me was still wanting some kind of help or at least daring to tell someone. (They had called me over issues with a mess up over the prescription i should have had; I’d again been left without my medication. ) I admitted what I was feeling. I begged to see someone. I don’t know what made me do that, ask for help when the decision was already made in my mind that this was it now and I’d come to the end. But I did.
I admitted that I wanted to end my life and that I was self harming. I admitted that I had the tablets to overdose. I asked to be seen and that I needed help now, could they see me or get the crisis team? I said how all the mess ups with my prescriptions and benefits and no help in crisis were piling things onto me and making it more and more impossible to cope. I was having hallucinations and flashbacks. I had been asking for help for months. Now I could not go on anymore, I was going to end it. I needed help.
The GP spoke over me from the start. She told me that “you have to be extremely careful about how you are coming across” if I expected to get any medication. She then told me repeatedly, in response to me admitting that I was suicidal and self harming, that “that is not a fair threat to make to people” that “you will find I do not respond to threats” and that I am a responsible adult able to make my own decisions and there is no reason that I should take an overdose. She then announced that she was going to end the call and hung up on me whilst I was begging her to help me.
If Someone with Borderline, or any other mental health problem, admits to suicidal thoughts, plans or intentions, or self-harm, it is the most incredibly ignorant and dangerous reaction to treat them as though they are making threats in order to manipulate and must be punished accordingly. The stereotype that people with personality disorders or any mental health problem are manipulative, or that being suicidal or struggling with self-harming is attention seeking, are extremely dangerous. It is all the more dangerous when it is trusted healthcare professionals acting on the basis of these stereotypes when their patients have dared to ask for help, meaning that when we are in immediate danger we are dismissed, punished and rejected.
Experiencing suicidal thoughts is not attention seeking. Self harming is not to create drama or cry for attention. Admitting that you are in danger and want to end your life, that you are absolutely at the end of the road and can’t go on, that everything being piled on you is pushing you nearer and nearer the edge, is not making threats. The attitude shown by the GP today makes it impossible to ask for help when we are most in danger. I now know that if I admit to the terrible thoughts and feelings, I’ll be treated as though I’m manipulating people and will be rejected. If patients are treated like this, suicide and self harm is made something that must never be admitted to or talked about and for which help can never be sought. If patients are treated like this, all the feelings and events that have brought them to the point of suicide are dismissed in an instant, as our position is made out to be manipulative fabricated threats rather than complete brokenness.
Yes, I am an adult. Yes, I am responsible for my actions. If I self harm or attempt suicide, it is my action alone. If I cause myself harm that is done by me alone. That does not mean that the experiences and emotions behind my actions are not real, that I am not in danger, that I am fake. No longer being able to carry on doesn’t mean I am manipulative. Asking for help and admitting to the horrible things in my head doesn’t mean I am making threats. Asking for help doesn’t mean the feelings that make me want to end it aren’t real. The fact that if I do something to hurt myself, it’s my action, doesn’t mean I’m not in danger and don’t need help.
I’m terrified of manipulating or hurting people I care about. That’s why I hide my self harm and did not tell anyone for years, why I usually don’t ask for help after overdoses… I’m scared that people may feel responsible for saving me… and the self-harm itself started in order to punish myself and hurt myself to turn it all in and not let the horrible things in me hurt anyone else, and overdosing is sometimes about utter pain and sometimes utter rage and loathing at myself and fear of who I’ve hurt.
People who are self harming and/or on the point of attempting suicide are not nasty manipulative frauds, they are in massive pain and massive immediate danger. They do not need punishment and dismissal. They need a place of safety and compassion and they need desperately for the hurt and the danger they are in to be believed.
It is terrifying to admit to things like how close you are to suicide or that you’re overdosing. I never say it to friends (though two friends have sometimes guessed) because I do not want to make them feel responsible to keep me safe or worried I’ll do it again. That’s one thing. But it has to be possible to admit it to healthcare professionals, if there is to be any way to get help.
Yesterday, my life was saved by a police officer who recognised the danger I was in, and by the emergency team who assessed me when he took me to them, and by the mental health workers at the safe haven I was taken to. I owe them my life. Thanks be to God.
The safe haven is a new organisation that has been running for just two weeks in my local area and I think massive good is going to come of it. I’ll post more on that going forward. Please God can that be the support other people find when they are in the state I was in yesterday, not reactions like the one I got from my GP. Sadly I think I’m not alone in what I encountered. And this isn’t the first time. I’ve encountered similar and worse lack of recognition or response to the danger I was in, and accusations of making threats or being manipulative, from within the personality disorder service and in crisis teams. If i am ever recovered enough to be able to somehow try to help other sufferers or explain to people what BPD is like and how to help someone in crisis, tackling this would be a massive priority for me.
Tomorrow I have my usual weekly group therapy, then I have my monthly care coordination appointment (it’s supposed to be monthly but has been canceled more often than not since October last year). It’s challenging at the best of times when this appointment comes round, especially when it closely follows therapy group on the same day, which is draining in itself.
I’m very worried about the care coordination tomorrow. Last month I was really upset and desperate in the appointment, didn’t get the help I felt I needed to stay safe and left wanting to end my life and overdosed. There was a complete lack of understanding between me and my care coordinator.
I’m scared something similar may happen. I’m scared that I might lose it like I did a couple of weeks ago. I’m so so ashamed of that and I feel dread when I think of it. I’m scared I won’t be able to control what I do and it’ll happen again because I’m so unstable right now, flicking into distress and hurt and anger so quickly.
Also, I’m scared because there are really difficult things I want and need to say. I can’t say everything’s good and fine or that I’ve made progress; I can’t say I think I have the support I need because there are massive issues and have been huge failures in communication and so many things promised have not been acted on. I now operate by expecting nothing from the service and expecting whatever is arranged not to happen. It’s “safer” that way. It doesn’t open me up with hope and trust then twist the knife with another let down or betrayal. It means I don’t ask for help either.
I need to communicate these things. I never do, usually, but if I don’t there’s no going forward. So I’m going to try to say at least some of them and write a letter as well in the next few days.
I do not know how to stay calm whilst I do it. How do you stop yourself losing it? How do you control the aftermath of feelings without harming yourself? How do you keep your emotions level when things that are really deep hurts to you, are unanswered or ignored?
I’d be seriously thankful for any suggestions!
Last week, after the really distressing meeting on Tuesday, where I completely lost it and just screamed and screamed, I had another meeting with the same CPN on Thursday. It went quite well although I am still reeling from Tuesday. I never lose it like that when anybody else is around. I do that alone at home, usually at night, usually cutting myself before I can reach that point, because it stops some of the noise in my head for a while and quiets the fury and hurt. On Tuesday all my control methods didn’t work and the worst of me exploded. Since then I’ve been feeling both raw and outside myself at the same time.
We tried to come up with other ideas for what to do when I am extremely distressed when I am on my own, other than always turning to cutting or overdosing. The problem is that no matter how harmful those things are, they do “work” to stop the feelings (if only by stopping me being conscious!) punish myself, so bring down the emotion and enter a state of numb nothing for a while, or at least explicable pain.
One of the things we came up with was the Rescue Box, which I’ve posted about previously. I’ve committed to making that up this week.
The other things my CPN suggested were: putting my head under cold water eg cold shower for 20 seconds, to shock the body and so bring down the emotion (a bit like the lemon juice idea!), starting some activities that would give me more social interactions and so leave me on my own less, developing a relaxing routine for evenings (which I’ve got out of the habit of), and sorting out my dodgy internet access so that I can have more contact with people via blogs and similar, as well as making use of online resources for relaxation and mindfulness.
I’m not very sure how this is going to go. I’m starting with small steps, making up the Rescue Box this week and getting in contact with my internet provider.
A large part of the problem for me is that all these techniques are great ideas but I too quickly reach too high a level of distress to be able to use them. When I’m in that state, or when I have more of the psychotic symptoms (which tend to accompany higher distress), it’s as if the part of my brain that would reflect enough to try one of these techniques just shuts off. I have an overwhelming need for someone else to keep me safe and almost hold me and ground me and prove something exists beyond the fear and distress. But the PD Service seem absolutely against anything that would lead to me not being on my own in these situations (like being referred to the Crisis Team who’d come to see me at home, or being admitted when I’m overdosing etc). I’m not entirely sure why. They are written into my “crisis plan” as ways to keep me safe when I can’t keep myself safe, but when it comes to it they are withdrawn or refused. This is something I’ll be talking more to my 1:1 therapist and/or Care Coordinator about.
I guess I have to learn to discover earlier when the extreme feelings are coming – at the moment they spring up at me from nowhere and that’s terrible. It feels very out of control. There’s no doubt that as I’m experiencing more emotions, I’m becoming less stable.
I’ll post an update on how things are going with trying these techniques.