Tag: mental health

Is Anybody Out There? The Support Group with One Member.

I hear voices. I don’t say it often, but I do. There are voices and characters who I can see and hear that you can’t. It’s sometimes scary, sometimes comforting but it is always isolating and confusing. I’ve not properly met anyone who experiences hallucinations before. Not knowingly and certainly not for a sit-down chat about how on earth they survive this thing.

When I was referred to the local support group for voice hearers I was intensely nervous. Hovering in the hallway of a dingy community centre that smelt like a mixture of damp and table polish a man approached us. He was in his seventies and walked with a stick. “You’ve got the wrong place love. This is bingo.” Sure enough the main hall appeared to be filled with elderly folk dabbing bingo sheets. After a while of trying locked doors a woman appeared and ushered us into one of the rooms with an air of secrecy. There were models of ships on every side board and the room looked like we had accidentally stumbled onto the set of ‘Dad’s Army’. The woman’s name was *Rosa and she was a CPN. She told me in hushed tones that this week it seemed I was the only attendant of the support group. Trying to swiftly move on but jarring slightly she added: “Voices. What’s going on with those then?”. What a conversation starter.

The next week I was really hoping to meet a voice hearer but after half an hour of waiting it looked increasingly unlikely. After several phone calls to the team’s office it seemed that not even an organiser was going to turn up this week.

For the next two weeks it was just myself and not one, but two organisers. *Dana, was also a nurse with a degree in voice hearing (something that I didn’t know existed). She accompanied Rosa and seemed equally friendly. As they eagerly told me that there had been ‘as many as’ five people in the group in the past; I began to wonder if they experienced hallucinations and delusions themselves. Yet another week passed and in the absence of real life voice hearers they gave me names of ones to research like Eleanor Longden and Ron Coleman. They assured me that I wasn’t alone. This was really hard to believe given that I was the only member to turn up for the support group four weeks running. They encouraged me to go to an official Hearing Voices Network group in the next city to continue my search for real life people.

I was so nervous. This time I was almost guaranteed to meet a voice hearer in the flesh. Nervous anticipation had built up in my chest. This group was reportedly very well attended and had been for several years. I didn’t know what to expect. Do other voice hearers scream and shout like they do in films? As the car stopped outside I prayed there would be no screaming or wailing. When I took a seat in the circle of chairs facing the centre I realised the obvious: the people opposite me were just people and they hear voices. Like me.

The meeting started and I was FULL of questions to ask. “Does anyone else find that distraction technique can be really exhausting? Do other people’s voices get angry if you talk about coping strategies? Am I weird for not wanting to become compassionate with my hallucinations?”. Yes, yes and no.

It felt so good to meet real life people, some managing to work regular jobs and many having been in hospital like I have. Men and women, young and old. I learned that every week the group was facilitated by a rotation of psychologists and they followed rules to ensure the group was a safe place for all. I really enjoyed the group, though, as predicted, the residents of my head were angry that I went. They hate being spoken negatively about.

I hope I can go again, I just need to stop my head talking me out of it. As the lone member of my local support group I feel obliged to keep going. 1:1 care, let alone 2:1 care, is hard to come by in the NHS and as they are funded until December I may as well soak up the support. Plus if someone else does show up, at least I will be there!

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Oh-See-Dee Irony… (a series of unfortunate paradoxes)

Through scrubbing my skin my hands become infected.

I was scrubbing at my hands in case they were infected.

I’m too scared to eat in case it makes me ill.

Then not eating makes me ill too.

I use hand gel to kill bacteria.

The gel cracks my skin and it’s infection prone.

I know my night meds make me feel better.

Yet when I take them I panic in case they kill me.

When the thing you use to stop freaking out gives you cause to freak out more; where do you turn?

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original image © UDC

And to think people think it is about being neat…

Please note: I am safe and okay. Just struggling a bit at the moment. I’m keen to keep the authenticity in this blog and after writing I decided to publish this in my ‘recovery notes’ area. Good news… crisis services (and services in general) are a lot better where I live now!

We Have a Home.

I left home when I was 16, I became homeless and started sofa surfing at 17, then I was in hospital until I was 18. Now I finally have a home just before my 19th birthday.

Since the start of my desperate search for accommodation I have wanted to live in a family. Residential care is so rigid and clinical and never felt ‘normal’ to me in the slightest. Communicating with a large care team hurt my head and I was living with people who had completely different needs to me. As a result I chose to look into a ‘shared lives’ system, which is in effect fostering for adults. People who need care and support are matched with families who can give it. It takes people out of care home settings and is a much more informal way of receiving care. I am now living with a family in another county, using two 24hr carers instead of 10+ rotating staff.

“There’s a family interested! Can I send over your care plans?” Is where it all started way back in February.

‘Ha. I won’t be hearing from them again!’ I thought as I reluctantly gave file sharing consent to my social worker. I’ve read my care plans. They are not pretty and I certainly wouldn’t want me in my otherwise very nice life after reading them. But this particular family gave the green light for me and my world to merge with theirs. I went to stay with them for a few days and popped in for many, many, cups of tea. Then a week ago I moved in for good.

Getting used to the more relaxed care is a challenge but so far I’m loving it. The move seems to have been nothing but positive.

Of course I had to consider health care and my furry family before moving. I finished work with *Esther on the day I left, she told me a referral is in for me to be picked up by the nearest community mental health team. I’m really hoping this CMHT can offer more support than *Esther’s team. Noodle and Mél are exceedingly happy in our new house, even if Noodle is still a little alarmed when she sees an over excited two year old hurtling towards her! Mél has the comfort of remaining in her own house of course, though she does venture around the living room after the tiny human’s bedtime.

So… I think we’ve finally got ourselves a home.

 

Still Here.

My need to blog has not faded. I have so many drafts and attempts but every time I am about to click ‘publish’ a new mess comes along. So I have decided to summarise my situation into one (hopefully succinct) post.

*Esther, my MH social worker, is stepping down. I’ve been told that her role is covered by my current care provider and that this is the reason for her leaving. I’m actually ok with Esther withdrawing as increasingly I have felt that there is little point to our meetings. This is no secret. I’m not improving and I am not learning any coping strategies. I’m not ok with the reason given because her role is clearly not covered by anyone involved in my care. No one else works specifically in mental health and she is my only contact to the services.

Which brings me to crisis. Not literally crisis now; but the topic generally. I’ve been in what I define as crisis several times since the beginning of the year. The life stopping, hard to breathe, all encompassing, kind of crisis. In this state I turn to anyone who could possibly help me and at the moment it is like running at walls. The fact that I am in supported accommodation counts against me on the crisis ladder stakes. Even though learning disabilities are my carers’ bread and butter I’m deemed as OK and ‘supported’ by CMHT. This view is based purely on the knowledge that people are paid to work with me. Which yes they are- but they can’t assess, advise or tell me what to do with myself when in that hopeless state. They specialise in learning difficulties- not mental health problems. Despite this CMHT are handing over more and more responsibility. There is always a crisis more crisisy than me.

A Community Psychiatric Nurse should be stepping in by the time Esther has completely stepped out of the equation; but in the withdrawal process my appointments will drop to just once monthly. It is my hope that the CPN will step in before these appointments drop out completely so I will see someone fairly regularly. Hopefully to learn some strategies to get me by and stop me falling into crisis- or non crisis- quite so often. No one seems to know how often I will see this nurse so I am terrified my care will dissolve altogether.

At the same time as all of this I am being assessed for therapy. This is a three week process in which I sit in a room and answer the questions of two psychologists. After the third week they will make recommendations and hopefully put me on the waiting list for more in depth psychological work (which has been promised for nearly two years now). If I am deemed well enough to be put on that waiting list I can expect a wait of up to a year.

A year of scooting on, around and over the edge.

If I am not well enough for the waiting list I will have to aim to improve through whatever time I am given by the CPN and the imaginary expertise of my carers.

My living arrangement has improved slightly though. Since having no choice over new year but to expose my team to this illness at its very worse things have improved. The carers I work with are getting more perceptive about when they might need to help me and what they can do. They are also relaxing a bit about the type and amount of support I need when I am in crisis. They can’t mend me but they can keep me going. I think they have finally been broken into the world of mental illness like a pair of ill fitting but sturdy doc martens.

College… hm. Lonely. Very lonely. I feel people see my support workers and think of me as a strange and intellectually challenged alien. I just want to talk and laugh with someone other than my note taker. It’s hard balancing communication with a large handful of professionals alongside a hefty college workload. I’m exhausted from it all.

There you have it, a whistle stop tour of my upside down world right now.

Mental Illness and The Goodreads Choice Awards

Recently I was checking out the results of the Goodreads 2015 choice awards and something caught my attention. In the category of Young Adult Fiction there was something a bit ‘samey’ about the books on show. On closer investigation eight of twenty books had mental illness/suicide centric to the plot. In short- If you are a fictional character in the Goodreads Choice YA Awards there is about 40% chance you are mentally ill.

One part of me chirrups: “This surely must mean young people are more accepting !”. But then the cynic in me groans that this of course depends heavily on how accurate the portrayal of mental illness is in the books. I’ve read stories where the serial killers are mentally ill and it is just a plot device to make them appear all the more threatening- like mental illness is an exotic spice to throw into an otherwise unappetising dish. These young adult titles aren’t like that though. The mentally ill characters are the ‘goodies’ of the tale; the protagonists, the much loved family members. So are we now seeing mental illness as an appealing character trait? If so there are many who haven’t heard the news.

I think we need to talk about the very real threat of mental illness becoming ‘cool’ amongst young people. We are getting there with raising awareness of the problem but we should also bear in mind how we could put more effort into profiling a solution. Wellbeing. Looking after yourself, positive thinking, healthy lifestyles. They don’t ‘stop’ mental illness striking but they can give you stronger armour against it. Alas, teens who make sure they get enough sleep and have a good work-life balance do not make very interesting narratives to follow; but perhaps the amount of mental illness in these titles indicate we have a problem emerging.

I know of schools that have a self harm epidemic on their hands; where young people are injuring themselves for means other than their own emotional release. In some classes it spreads through friendship groups as a trend or a badge of honour. It’s risky for all involved and it’s often the people that leave their wounds hidden behind jumpers and their mouths shut that need to be reached out to the most. What we don’t know is whether these books are so popular because teenagers are idolising mental illness or because, perhaps more worryingly, they see themselves in the ill characters.

Are characters with mental illness deeper and more mysterious than ones without? In the real world I don’t think this could be further from the truth. There is nothing ‘mysterious’ about me sobbing, or ‘deep’ about medication knocking me out every night. I haven’t read the books so cannot critique the portrayals but the prevalence of mental illness in the list struck me. It can’t be coincidence. Is it awareness or glorification? Where is the line between the two? Does mental illness guarantee a juicy plotline?

If you are interested in reading a book with an accurate portrayal of living with a mental health condition I would fully recommend Holly Bourne’s ‘Am I Normal Yet?’. It is to date the best book I have been able to find showing what it is really like to live with OCD. I’m hoping to read the eight books on the list to see if I can work out why ugly mental illness might be so popular.

For The Mental Health Team Teach Me So.

When she picked up my call two days later I was covered in glue from trying to stick the jagged shards of myself back into an almost human-like form. I’d been rebuffed by people I trusted, dramatically shortened said list of trusted people and shattered into a thousand pieces.

Why?!

A meeting had taken place which I had not been invited to. It was about my care, the roles of the professionals around me (which I am forever being told I misinterpret) and setting goals for my recovery. Why couldn’t I be involved in this? What did they not want me to hear? They tell me to be responsible for my recovery but give no opportunities for me to do so.  The summary I got from my co-ordinator involved the words ‘responsibility’ and ‘independence’ many times. According to CAMHS I had these skills in abundance- have they vanished?! Did I never have them?! This lack of communication and influx of mixed messages is what they laughingly refer to as person centred care. Let’s summarise:

So far the community mental health team have taught me:

  • I should phone them more often.
  • But if I do I’m being dependent.
  • If I try not to be dependent I’m not being proactive.
  • If people do the wrong thing and hurt me I should have ‘taken responsibility’.
  • If I do ‘take responsibility’ then I should be more cooperative and trust.
  • If I give them trust they will break it.
  • If I didn’t reply to emails I’d be non-compliant.
  • If I send practical emails I’m breaching boundaries and being inappropriate.
  • Despite being a full time resident in my body I am not a professional.
  • Meetings are for professionals.
  • Professionals will make decisions in meetings I don’t know about.
  • I am not being proactive because I’m not making decisions I don’t know I have to make

Basically the only message I am getting loud and clear is that I am a dung beetle to the service. However this analogy does suggest something about the service itself…

I’m so confused, I don’t know what to do because every move I make is wrong.

CMHT- what do you want from me??

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(They close for two weeks over Christmas… Ho Ho.. Huh?)

What Is Going On At Southern Health NHS Trust?

The story starts with a young man named Connor Sparrowhawk. Connor was 18 years old when he had a fit in the bath at Slade House (an NHS treatment and assessment centre) in Oxford. He was already diagnosed with autism, a learning disability and epilepsy but to seek further support when Connor became more aggressive and agitated he was admitted to Slade House for further assessment.

In the report following his death it was found that Connor had not been risk-assessed appropriately and drowned from an epileptic seizure whilst  bathing unsupervised. The unit was closed in November this year after failing all 10 quality and safety standards from CQC.

The Tale of Laughing Boy from My Life My Choice on Vimeo.

Connor’s family didn’t give up. They started the ‘Justice for LB’ (laughing boy) campaign for an independent enquiry into his death. In the process they are standing up to the Southern Health NHS Foundation Trust who could ultimately have prevented Connor’s death.

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Connor Sparrowhawk (Laughing Boy)

Yesterday the news broke that over 1,000 unexpected deaths, like Connor’s, had been left uninvestigated by the Southern Health Trust since 2011. Only 1% of investigated deaths had been that of people with learning disabilities. A worryingly low percentage compared to the -still low- 30% of adults with mental health problems who died unexpectedly investigated.

How was this allowed to happen? The report found that there was neither “effective” management of deaths and investigations nor “effective focus or leadership from the board at Southern Health”. The report states that the NHS Trust had: “lost learning, a lack of transparency when care problems occur”. Connor’s family had been concerned about him and had made staff at Slade House aware of his needs, such as epilepsy, repeatedly. If appropriate assesments and proceedures were to have been followed he would likely still be here today.

“We have little confidence that the trust has fully recognised the need for it to improve its reporting and investigation of deaths.” – Mazars

The worst part of this case is that the trust has shown little to no signs of acknowledgement of its failures and the immense need for changes to be made. The final report is yet to be published.

Connor is lucky to have the support of an amazing family- both in his eighteen years of time with them and the time in their hearts now. However it is worth baring in mind that in over-65s with mental health problems only 0.3% of unexpected deaths were investigated. Many of these patients may not have had family to pursue the reasons behind their deaths. No one dies for no reason. There is always a reason. For the safety and care of future cases all unexpected deaths should be investigated. If malpractice is to blame then these people have been tragically neglected by a service that is supposed to be caring for them. The reasons behind their deaths are covered up by not searching for the cause. How is this acceptable? Anyone who brings about the death of another should face the consequences. Whether it is an individual, a group or an NHS Trust. An investigation into one death could be the finding of a fault that could prevent 1,000 more unnecessary deaths.

Many thanks to Sara Ryan for letting me share her and her sons story and message.

‘Most Appropriate’ Versus ‘Suitable’ Care

When I left hospital I was assured that I would be fine. Social services found me a shared house to live in just a forty minute bus ride away from the city I had began to establish my life in. It was great.

But this, the ‘most suitable placement’, was a placement for people with learning disabilities. Eager to be out of hospital I agreed to move here despite not being of this criteria. I thought it would be okay as many promises were made. Though the clients have very different needs to me they are caring and sweet people whom I felt would be fine to live with. I’ve been here for three months and am becoming increasingly desperate to move on.

Though the people I share a house with are lovely, there are difficulties that accompany living with people with a learning disability when you do not have the same. I’m no saint and many days I have been riddled with guilt about just how much the house’s atmosphere effects me. I’m not in their world, I don’t understand a lot of things they get angry and upset about. I try very hard to be empathetic and see it their way. It’s been eye opening and has lifted me out of the total ignorance I was previously submerged in when it came to learning disabilities. Many people with an LD are fantastic. But living as the only person in the house who has a handle on why it’s not ideal to start the dishwasher just as we need plates for dinner is hard. When I’ve had no sleep and feel low and lonely I miss the conversations I had with flatmates at college. Instead I’m in a loop of “How are you?” “Good. How are you?” “Good.”. Unable to go any further in the conversation without causing confusion or worry. The drama in the house is intense and consistent- nothing is transient. The grudges. The door slamming and tantrums that arise from the most minor of problems. For someone with an anxiety disorder this clearly isn’t the right place for me to live.

It’s not just the other residents. I’ve had two incidents of medication security being extremely lax. The most recent incident of which I found myself with a box of paracetemol. This is something that shouldn’t be happening for the sake of any client but as a person with acute mental health problems this is paticularly dangerous. Despite being here three months and several staff voicing their need for appropriate training no such thing has been put in place. Nor has sighted guide training or visual impairment awareness. Every time a problem raises its ugly head it often comes down to the staff -quite rightly- pleading ignorance. As time goes on things are increasingly my fault. The reason that the staff are not mental health aware is because I have not given appropriate input/provided the training. The medication should have been safe despite me finding the keys in a kitchen drawer because I’m blind and shouldn’t be able to use keys anyway. I should be more saintly about my house mates more frustrating behaviour because ‘they do have learning disabilities’. I don’t. But just as it isn’t their fault they have their disabilities it isn’t my fault I have mine.

As far as I’m aware this is the most appropriate care I have access to at this point in time. ‘Most appropriate’ meaning the best of the not appropriate. Please note: ‘Most appropriate’ is not a synonym of ‘suitable’. I get one hour of support a week from a mental health specialist and, supposedly, seven hours 1:1 support a day to help me get by. But the staff who provide my 1:1 are not trained for my needs like they are for the other clients they work with. Though a handful are fantastic and sensitive people who apply common sense to help me through, there are others who completely misunderstand and judge me and my actions. I, of course, have little to no control over the roulette of staff doing my care. If I request certain staff I am accused of being demanding.

In my county there are no steps between requiring more than one hour of mental health support a week and needing to be in hospital. It is one or the other. This is absolutely bonkers considering the amount it costs the NHS to give someone a bed. I have worked too hard to go back to hospital, but insufficient care is setting me up to fail.

If I lived just a twenty minute journey to the west then I could apply for supported accomodation suitable for my needs. However I am not eligable for it as long as I am stuck in a county that can’t cater for me. I’m angry that I have been put in an inappropriate placement where my needs and safety are often neglected. I could tell story after story but right now I don’t think anyone is hearing me. This is happening to so many people. When will someone hear us?

RECOVERY IS JUST A LOAD OF BALLS. METAPHORICALLY.

Seriously.

In French there is a saying: “le mieux est l’ennemi du bien”. Translation: The best is the enemy of the good. I can’t think of a phrase more truthful about mental health recovery.

The best is doing everything. In my head this is running around; getting top notch A Levels, spontaneously producing poetry and blog posts, finding somewhere great to live, learning more languages, pointing my finger at the government on Twitter and… Being healthy I guess. But if I’m honest my ideal doesn’t specifically contain being recovered. It’s just a fact that in order to achieve these things I would have to be. I haven’t achieved this basic requirement but I’m still going for it full throttle. Day in, day out I’m turning up to the tracks wearing pizza boxes on my feet and hoping to be Usaine Bolt. I’m tripping and falling and generally being stupid because, the truth is, recovery is a load of balls!

No, really.

You have to, like everyone else, juggle like crazy to catch all the things life throws at you. You didn’t learn to juggle properly so, inevitably and without warning, you lose control. You drop everything and have to start again.

The bit I need to get my head around is that no one learns to juggle with eight balls. They start with one and work their way up, dropping odd ones on the way but eventually getting into the rythmn of life. Of course you can stop juggling and put them all down: but that is your decision. You’re being strategic and stopping for a break before everything crashes down. After you’ve rested, eaten a few cheesy snacks and gulped a cup of tea you can start juggling again. Crisis averted.

I apologise for the long analogy. But recovery is a load of balls and I have to learn to juggle one way or another. It’s just deciding what takes priority. By trying to get the best am I missing what would actually be really, really good for me?

Maybe I’m A Party Pooper… But…

I don’t *get* Halloween. I don’t understand it and I don’t like it. Why do we have a day to celebrate scary things? Where is the joy in scaring people and being petrified? More importantly why have we been bombarded with it since ‘back to school’ left the shelves back in September ?

I don’t think myself, as an anxious person, and Halloween mix. I’m dreading the knocks on the door tomorrow night; figures in black and masks, drinking and noise. Even if it is just kids from down the road- it sounds like a recipe for panic attacks.

The one thing I hate the most is that there is no ‘Halloween Opt Out Scheme’. I can’t wear some kind of badge that says “Please do not scream stuff at me- I may have a brake down”. There is no way to get across that you are genuinely terrified on a night that glorifies being genuinely terrified. Some people seem to believe that Halloweeen gives them the God given right to be nasty. Teasing spooking and scaring- “AH COME ON ITS HALLOWEEN.”

It’s not that I’m a wimp or a spoilsport- but I find something very unsavoury about the celebration. People seem to think it is a lisence to do anything they like to whoever they like. Just bear in mind that not everyone is ‘in the spirit’ -pun- of Halloween. So just be respectful, okay?
I’m probably spending this year with a book and hoping to all the lucky stars that no one knocks on the door. Can’t we hibernate until Bonfire Night is over?


I’d love to know if anyone else with anxiety/mental health problems feels this way too, at the moment I feel like a massive party pooper and a rubbish teenager. I did however feel the need to take this cute snap of little Mél inside a pumpkin bag from Tesco!