The impact of the Mental Health system on my life

 

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I sat this week just for a while and let my mind wander, wander back into that place I used to be, before I entered the mental health system. It was hard not to think of all those missed opportunities and long lost hopes and aspirations, those dreams I had of career promotions at a job I now no longer hold.

I also began to think of all the things I have learnt over this time and I realise how much I have changed as a result of my interactions too. I am far more sceptical of medical professionals, more willing to challenge and ask questions of those who are involved in my care. In truth I guess I’m a different person shaped by my experiences in a system that at times has felt more like an enemy than a friend who is trying to help me.

The reality is so much has changed since I first became unwell and so much of that change has been negative. I lost my job due to my mental health admission, it was it seemed impossible for my employer to employ someone who had been in a psychiatric ward. I can still remember being let go and thinking how unfair and unjust it was, I knew I wasn’t well and I knew it might be a while before I could work full time again and yet I so wanted to keep my job. It gave me hope and a future and something to hold on to and strive for and then suddenly it was gone.

I lost my dignity the little that I held, the first time I was forcibly restrained and held against my will – it didn’t feel good, it felt disempowering and it hurt. Here I was a vulnerable person being treated like an animal to be caged, no one spoke to me they just seemed to shout orders. I felt like no one cared and no one understood.

Before I entered mental health services I knew nothing about mental health law, sections, forcible restraint, forced medication, deprivation of liberty or locked wards. I’d never had to live by the law of a hospital ward, those that dictate when you can and can’t have a drink and even then it’s from a machine. I learnt to tolerate powdered milk and powered tea from machines that gave patients lukewarm drinks, some days I use to beg for a hot drink like normal human beings have. I just wanted to be treated like a normal human being not some second or third class citizen.

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Time off the ward was a luxury and one which once on a section had to be negotiated, pre planned and approved, suddenly I became adept at forward planning my entire life. That’s what being in a mental health hospital does for you, it makes you an automotive robot who is controlled by others rules and commands.

Before I entered the system, I didn’t realise how scarce talking therapies were, how things were time limited no matter if you were well or not. I can recall my first therapy was CBT and once I had the maximum number of sessions allowed, no matter how well I was it stopped. What a waste of public money to withdraw a service before it’s had the desired outcome, it’s a bit like taking a cast of a broken limb before it’s healed.

During my time in mental health services I learnt that good old saying that seemed to come from mental health nurses I encountered, “in five minutes” of course I soon leant that meant not now, go away. I often wondered why these people couldn’t be honest and tell me they were too busy.

I also learnt that people judge by appearances, so if you happen to look clean and tidy then they assume your mentally well and coping. Though of course that may not be the case, but they had their rule that tidy means well. The number of times I have been told but you look tidy and that equals well, I might not have showered in a month but because I didn’t smell they thought I was ok, they never asked they just assumed.

Just like they assumed if you challenged them or asked questions you were deemed aggressive and labeled as having violent tendencies. Of course it couldn’t be the case you were just asking a question or challenging archaic rules and regulations which made no sense to anyone but the hospital staff.

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I soon learnt about labels too the ones which medical professionals use at will and stick on a person like some kind of post it note. The very first label I got was actually wrong, yet it’s still on my file for all to see. The doctor who gave it me had seen me for just a few minutes yet his skill was such he could diagnose so quickly and as it turned out so wrong!

Labels, judgements, assumptions all seem to be things I have learnt and in truth they are negatives I’d rather not have seen. I guess mental health services are an eye opener for those who suddenly find themselves thrown into this world of chaos and confusion.

Before I entered this system I wasn’t aware of so much disparity between mental and physical health existed. I also didn’t realise so many things about myself, I have faced many negatives and yes they have changed how I view the world and how it views me, but I have also learnt much too. Not just about the mental health system but about myself as well, I know now that I am a fighter, I want to learn to cope with dissociative Identity disorder and one day in the future I will get back to work. But it won’t be in the job I once did, oh no my aspirations have changed and I like to think for the better.

 

Copyright DID Dispatches 2014

Community Mental Health Teams – In Crisis!

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For the past few months my regular Care Co-ordinator/CPN has been absent, they have been off sick since the very beginning of March. I usually saw this person every few weeks and had been trying to work with them in a more open and mutually respectful way.

Now psychiatric services within the NHS are stretched at the best of times, but I have over recent weeks realised that there is no longer any give in the system. Staff are working to maximum capacity and every last morsel of energy and work time is being squeezed out of every single one of the staff who make up the Community Mental Health Team (CMHT).

Once my CPN was off sick I quickly realised that there were no contingency provisions available for those people who like me were on the client workload of the now absent member of staff. I also understand that each one of those people who no longer had a service, were most probably vulnerable and in need of support from the Community team. The reality sadly is that I can only assume that like me, many of them were failed for a period of time and like me struggled on without that support until they could no longer cope.

A few weeks ago I had to call the Crisis Team in the middle of the night, they in turn flagged me up to the CMHT and as a result one week after my crisis I was called back. Now I don’t know what the services expected me to do in that week long gap between the crisis call and them making contact, but I know it wasn’t easy. Yet I had the benefit of my Psychologist appointments and my support workers and family, imagine if I had no one would I have survived that week?

After I eventually spoke to the CMHT on a couple of occasions I asked if someone could visit me at home, to offer some kind of mental health support in the interim. I had realised I benefited from seeing my now absent CPN and that I needed that kind of provision again. They allocated me a person who would visit on a temporary basis and so far we have had two meetings, which I have found helpful. I don’t know if these visits are going to continue throughout my regular CPN’s absence, yet I feel that I need them too.

The truth being my CPN still has no return date as far as I know and they have been off now for some months. Yet the reality is also very clear that the service hasn’t got the ability to provide cover from existing staffing resources. The services have in recent years seemingly been stripped to the bone, staffing levels reduced and workloads increased.

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It’s no wonder there are staff absences within CMHT’s, that they don’t have the ability to operate a contingency plan to cover for such absences. It’s no wonder that service users/clients are left a week between being flagged up by Crisis and any contact from the community team.

When I first began working with community mental health team the services were very different, my first CPN became a part of my life when I was just 16 years old. Child Adolescent Mental Health Services (CAMHS) didn’t exist back in those days, once you left school and the remit of the school psychiatry team you came under adult services. Now I am not advocating that was better far from it, but CMHT’s were just different back then. They saw a wider age range of clients and yet there staffing numbers seemed much larger, I could easily get an appointment with a CPN every week. The CPN was far more relaxed and easily accessible, they’d meet me for coffee during my lunch break. We use to have my appointments away from my home and the stresses of a dominating mum, my meetings were secret the family never knew. As a result sometimes I would need to cancel last minute and I always spoke to my CPN when I called, she seemed to have a smaller case load.

In fact even 5 years ago, the community teams looked much better equipped and that’s my concern. We seem to be rationalising Mental Health services both in the number of inpatient beds available and the community provision too. But at some point, will we not cut too thinly, will we not end up squeezing the system at both ends and end up causing more harm and in turn more demand for services?

In my area a few years back the CMHT’s were rationalised, some services were amalgamated and that has meant less Doctors and less CPN’s. I no longer see my psychiatrist unless I’m deemed to need an appointment, so when I am particularly unwell the person I meet feels like a stranger instead of a familiar face. If I was to go to hospital I would now have a different psychiatrist to my not so regular one in the community, even more confusion and disruption for clients.

The lack of CMHT staff mean they have bigger workloads and less time to go around, thus appointments are less frequent and often shorter. It’s impossible usually to call the CMHT and speak to your own CPN unless of course they are on duty. But then they are too busy to talk or help, instead they are probably running around trying to do the impossible for ever growing numbers of people. I can’t imagine the strain these staff are under, but I can see that it’s intense and it’s not good for them or the clients they are desperately trying to help.

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It feels like it has all gone too far, the services are being placed under constant attack and overwhelming pressure. In Shropshire the number of beds has been cut just like in many areas and so searching for a bed is a mammoth task these days, you are no longer admitted to hospital until you are more unwell. Now I’m not so sure that this is a good thing especially given community provision is also under attack.

If CMHT’s are stretched to breaking point, how can they help the growing numbers of people needing services. It’s simple maths really, less beds with the same, if not growing numbers of clients means more clients needing to be picked up by community services. Less staff in those community teams means a lesser ability to deal with the increasing demands being placed upon them.

Of course we all know who suffers, yes the staff do clearly but the main losers in all of this are the clients, people like me who suddenly find themselves adrift from community provision and support. In my case staff sickness meant no CPN visits for over 3 months, now that cannot be right.

I don’t blame the staff, in fact I feel sorry for them if I’m honest, I’d hate to face the intolerable strains of increasing demand amidst less resources. But I do blame the people at the next tier and above, managers and trust executives who seem to be allowing the situation to go on unchallenged and who undertake these restructuring exercises. But most of all I blame the Government who clearly cannot comprehend that they have a duty of care to those with Mental Health problems, who talk about parity of care, but don’t deliver.

My CMHT couldn’t meet my needs when faced with a sickness absence, but I don’t blame them it’s not their fault, it’s the fault of those who squeeze the NHS time and time again.

Copyright DID Dispatches 2014

Making my journey with D.I.D bear-able

Making my journey with D.I.D bear-able

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My Little parts are keen for us to introduce our special friend

Ever since my melt down point a decade ago I have had the company of a cuddly creature to keep me feeling safe. Initially this was a rather large creature who filled my arms and to be fair wasn’t so easy to carry. After 2 years my children and I chose a new creature whose size made it easier for me to carry and to discretely transport around.

Now my cuddly creatures are not live animals, no there are teddy bears called Cuddles and Ted, between the they have been with me throughout my journey through the mental health system. Now cuddles was rather cumbersome due to her size, it made it difficult to carry her around and so she is now retired to safe storage but Ted she has been with me for 8 years now and is a daily part of my life.

I’m not afraid to admit I have her, in fact until a couple of years ago I couldn’t leave her at any point in the day. Ted was carried in my arms daily, at home and when we went out she has been a source of comfort and in many ways has given my little alters a sense of grounding and security which has been significantly helpful.

Ted has been with me in all bar two of my acute hospitalisations, she’s been locked in a forensic secure unit and a non-forensic one too, she’s endured being detained by the police when we were repatriated to hospital in the cage of a police van. She’s been with me when I have tried to end my suffering and when I have self harmed, in fact Ted has been through every step of the journey since 2006. She has spent some 130 plus weeks in hospital, her predecessor cuddles spent approximately 65 weeks in hospital.

I guess when I carried her everywhere I stood out, she and I were a partnership and yes she was my security blanket if you like and some patients and certainly some staff found it difficult to deal with this women and her bear. I was unable to cope with life, with the memories and the flashbacks which filled me with dread and fear, with the confusion and anxiety I felt I just wanted the ground to swallow me whole to stop my anguish and my pain.

I can recall being verbally attacked by a stranger who took offence to me and my bear, he said ‘people like you should be locked away’ and I guess that was easy for him to say but I wasn’t always this wreck. I am a mum and I was once a wife, I worked hard and contributed to society I never expected to find myself in a mental hospital nor carrying a bear and yet it happened. I knew I had a tough start in life but I hoped I’d managed to leave it all behind, I thought I had, but then the reality was that it was just hidden away. You see in truth much pain and anguish from my past was hidden deep inside of me waiting to reveal itself when I was least expecting it. I didn’t need a random stranger attacking me for carrying a bear I felt bad enough about myself who I was and the fact I couldn’t cope.

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Ted has been a comfort that I needed through the darkest of days she has been there and I am not ashamed that I needed her. She has kept me grounded at times especially when I have suffered flashbacks and memories. I could keep telling myself & all my alters, all the parts of me that when bad happened we didn’t have Ted and yet now we did and that meant we were safe.

As a child I only recall one teddy bear he came from a bad person as a reward for being ‘a good girl’ for not telling when the person hurt me and yet I loved that bear. I remember coming home from school and my bear being gone, my mother had decided I had to be punished for something and taking that bear away was my punishment. I didn’t have another bear, unlike most children for me toys were rare and they came and they went as a form of control.

When my children bought me Cuddles I was elated and so grateful and yes she served me well when I first hit melt down, but her size made her harder to carry. But like Ted she took so many of my tears as I could hold her and let out the pain that ripped deep into me at that time, I find emotions so hard that it’s impossible for me to explain them to others easily, to express them and yet I needed to.

My cuddly friends have been a part of each day now for a decade and I doubt I could have managed without them, it felt like they were attached to me, it probably looked like that to the world. We were this person who went everywhere with her bear and people became used to that, some became so accustomed to her they no longer saw her.

About two years ago I made the decision to put Ted inside my bag when I went out, she was still with me 24/7 but she was no longer a visual constant in my day to day life. I remember the first time I placed her in my bag I felt bereft, but I knew it was the right time to stop carrying her in my arms all the time. Part of my decision was based upon the fact that my constantly carrying this bear had caused me significant muscular issues which required physiotherapy treatment. For years I had held her in my arm so had held my arm in a bent position this had caused muscle weakness and tension and when I realised that all this pain and discomfort was a result of my needing Ted I knew I had to take action.

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For a further year Ted was still a constant, she was carried around everywhere I went, the doctors, the shops, even for a McDonalds. Then one day I forgot her she was left sat at home on my bed and I ventured off to an appointment, by the time I realised we didn’t have time to return to get her. I had to face the fact that we would have to survive without her for these few hours and of course we did, we managed and it led to more and more organised opportunities where Ted stayed home. I had some control over this so if I was struggling or facing a difficult time Ted came along, but if I felt we could manage well then she stayed home.

Now Ted lives on my bed and there are times she comes with us, so every time we attend psychology she comes along too. When I face Care plan meetings Ted comes too, holidays and other times away from home involving overnight stays she is part of my luggage. But I can now manage without her when I am shopping, or attending the GP’s, visiting friends or going for a coffee. Ted probably spends 50% of her time on my bed and 50% of her time in my bag or on the sofa, it’s a far cry from my carrying her 24/7.

This week I’m attending an event which means I’m away from home, so Ted comes too she will stay part of her time on my hotel bed but I know she’ll be with me when I need her. There will be times when I do need her, times when I feel vulnerable or I am switching more and I need to try and ground myself.

Now it maybe hard for people to understand why I a grown women need a bear but of course parts of me are little and need the comfort a bear gives. She also allows me to know that the past is over and that is so important to me. I am fortunate that my family accept her as a necessary part of my life currently, they don’t nor have they ever judged us. In fact my children who are adults themselves will often say hello to her and they occasionally buy a new outfit for her. It’s as if they understand the role she has and continues to play in our life.

I never expected this small bear Ted would become so important to me and obviously carrying her everywhere day in and day out she has weathered quite a lot, but I can’t imagine replacing her she will just age and become more loved as time progresses. She may not come out with me as often and one day she may just live on my bed, but for now Ted will keep playing whatever role I and all my parts need her too. Be that grounder, comforter or as a sign of reassurance Ted is a significant part of my healing journey and I’m glad she is part of our life.

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Copyright: DID Dispatches 2014