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!


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.


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.

From the Rubble I Can See the Stars

Today I’m in hibernation. My body says sleep and my legs say still and my head says no.

Over the last few months it has felt like I have been mentally burgled.  Everything that I thought was nailed down in my life has been dragged away and burnt to embers, leaving me sitting with the scuff marks on the ground.

The pursuit for housing seems to be going on forever and in the meantime I’m stuck in hospital. To understand all of the systems I am stumbling through I would need a degree. Everything seems to be set up for people with one disability or illness- any more and it turns into a clash of services and procedures.

Yesterday I had an unexpected blow. It broke me completely at first but if anything now I feel relieved. I say to myself “there is nothing to lose and everything to gain”. Again and again. Something will change. The only way from here is up. It’s stoked the fire for me to keep going. Well that’s the case at the moment anyway.

A Non-Definitive List of Things I Will Not Take for Granted Once I Have Left Hospital

I have now been in CAMHS inpatient care for nine months: AKA far too long. I’m now approaching my discharge and, as it edges closer, I become more and more desperate to get out. The gripes and the grudges build up until I just have to make a list. So here it is.

A Non-Definitive List of Things I Will Not Take for Granted When I Have Left Hospital

  1. Being able to get a drink whenever I am thirsty and not having to wait for staff to be free to get it for me.
  2. Sleeping in when I am tired.
  3. Going to bed when I am sleepy.
  4. Being able to say that I have a headache without a doctor pouncing on me.
  5. Not being questioned on how I care for my dog.
  6. Having the option to be with people or not be with people.
  7. Not being surrounded by distressed people constantly.
  8. Not suffering the horrible noise of the panic alarms which seems to change pitch as you move your head.
  9. Absence of people playing ‘devils advocate’ every time I just want to have a little grumble.
  10. Choosing who I spend my time with.
  11. Going out when I want
  12. Going where I want
  13. Singing at the top of my voice
  14. Going to College
  15. Being with friends
  16. Not being alone
  17. Internet access
  18. Social media support
  19. Independence
  20. Food which isn’t from a silver tray
  21. Privacy
  22. Organisation
  23. The power to change the central heating temperature
  24. Not being observed
  25. Not having an ever changing conveyor belt of staff in charge of my care
  26. Having more than one 16th of control over the television remote
  27. Watching soaps without people moaning
  28. Long dog walks to nowhere in particular
  29. Loud music
  30. Laughter
  31. Doors that aren’t locked
  32. Being able to go and see people
  33. Being stable enough to make plans with more than a 60% chance of it actually being carried out.
  34. Gyms and swims!
  35. Fresh air
  36. Not having visiting times to stick to.
  37. No ‘compulsory’ workshops to go to.
  38. Watching DVDs rated above a U
  39. Not being woken up during night observations (they turn the lights on once an hour)
  40. Not being in hospital!

I am currently camping in a coffee shop making my time off the unit last as long as I can!

If you have been in hospital, what will you never take for granted again?  

The ‘Nuh-Huh-Suh’: Just North of Basingstoke

It is Saturday the 31st of January and I am walking my usual circuit around the grounds of *Heron Unit. A nurse is with me, amicably filling me with optimism about my upcoming transition to a new unit.

“So where exactly is it?” She asks as we turn down the path and pass some adult patients in their usual cloud of smoke.
“Back up North. It’s in Yorkshire!” I have spent the last five months being ‘the Northerner’ in a hospital in which all the patients are Southerners from about as south as you could get. Any further south and the hospital would be in France. The thought of going back up North had never failed to cheer me up over the past few weeks.
“So that is north of Basingstoke right?” There was an amazed silence as I stop walking to give her a withering look. “I’ve never been north of Winchester…” She admits, unable to meet my gaze.

This example was overall representative of what the whole patient and staff body felt about my move.
“Yorkshire? Is Birmingham near there?” They would ask with an alarming lack of irony.
The new unit is indeed North of Birmingham, and Basingstoke. Excessively North of Basingstoke in fact. 246 miles North from it.

To the girls, all of whom I have seen arrive on the ward, my move is a huge conversation point. To them it seems inconceivable that there won’t be a dog on the unit. Plus the concept of ‘The North’ appears to be of similar sustenance in their heads as that of Neverland. They have never been, they can’t imagine it and they get alarmed when they get confronted with Northern propaganda such as Coronation Street.

“Is it NHS?” Was another top question. The word NHS was said in a Miranda style whisper. We were, after all, in a private unit which we unanimously agreed was appalling, so the idea of anyone going for treatment on the National Health was worrying. I’m pretty sure children who get put in psychiatric units on the ‘Nuh-Huh-Suh’ appear, looking sad and impoverished, on comic relief. I’m no snob- but by the time move day came I was convinced I was going to get frostbite on the journey up and starve to death on a diet of gruel when I arrived. But still- it was north. So it certainly would be better than anything that the south could offer me.

How to Smuggle a Dog into a Hospital

A Dog in A Hospital?

“No.” She said. “Definitely no.” The rather pinkish woman, introduced to me as the ward manager of the PMU, was looking down at a rather sheepish looking Noodle and I. Myself, in a hospital gown and a tired Labrador curled at the end of my bed. It is the 14th of August and soon to be my second night on paediatrics. The previous night Noodle had returned to a friend’s house to be fed but from the second she arrived back on the ward she made it quite clear she had no intention of moving again without me. The little dog had spent the day watching members of the psychiatric team coming in and out- sending the message ‘don’t hurt her’ telepathically through her chocolate eyes. Now she was tired and warm and just wanted to sleep the night away by my side.

“We can’t.” The woman reconfirmed.

“You can.” I say, my voice wavered as I begged my eyes not to fill. “She’s a guide dog, I need her to move around. She’s my eyes.” I don’t want to have to have this conversation- I am after all here because I can’t deal with the normal stuff, let alone advocate myself.

“The other children don’t have dogs in.” She continues. “Their dogs are special too” I grimace at the word ‘special’. Then to my great relief a mental health worker returns and after a ‘quiet word’ the pinkish lady’s orders had lifted, though her scepticism hadn’t.

Noodle spent the night alternating between my bed and the chair beside my bed. The floor was freezing cold and I had nothing to offer her in the way of a blanket. She then went on to spend every night with me in the PMU, a favourite with the nurses and a source of curiosity for passers-by. In fact her stay had gone embarrassingly well for the reluctant pink lady. After a couple of nights I find myself sitting with the duty psychiatrist, who kindly popped in everyday regardless of when her shift ended, at the end of my bed. We were discussing my fears of Noodle being rejected again. I knew I was going to go to hospital but I had no idea where, finding a CAMHS bed is like a cut-throat level of bidding on Ebay. Beds were hard to find for anyone, let alone a girl with a dog.

“She has to come with me.” I tell the psychiatrist as I stroke Noodle’s ears.

“I know…” she replied, biting her lip as she watched us carefully. “I have put in all the referrals that the dog is non-negotiable. Both of you or neither.”  She smiled and I smiled back, though her voice was that of someone who was attempting to build a hadron-collider in their basement.

News came back on Friday that there was a possibility I would be going to the *Heron unit. They had to check that there was no one on the ward with an allergy or a dog phobia and everyone’s parents had to be called. I later found out that in the gap between that Friday and my arrival on the Tuesday there had been several calls to guide dogs. Most of the queries were on the ‘will it poo everywhere?’ variety. Within a week of arriving on the ward Noodle was the favourite of all the patients. Her determination to keep me safe never wavered, running to get staff when I needed help and sitting in the corridor outside my room to show if I was about to do something dangerous. She even tried her hand at carrying cards with messages on to the staff!

Now, as I am about to be transferred, the ward is having trouble contemplating what they are going to do without a dog on the ward. A far cry from the ‘infection control risk’ they reluctantly took in. I hope that they find themselves a PAT –Pets as Therapy- dog. Though I think that the ward manager is quite keen on getting her own dog and bringing it to work with her every day! Overall, this dog belongs with me. No matter what.

Nope and Noodle

A Very Impatient Inpatient

It is five months on from my last post. I did, as expected, move a couple of days after the post to a CAMHS (Children and Adolescent Mental Health Service) psychiatric bed. I was admitted into *Heron with my guide dog Noodle early on a Tuesday morning. By lunch time my bags had been searched, half the items removed, and I was sitting staring at the four white walls of my room. The ones I am staring at right now.

Since coming into hospital I have been surrounded with the love of those closest to me. In fact within the first few days of being here I had received so many letters of support that Social Services (Smile Stompers) banned me from receiving mail from all but one or two friends. The days were slow at first but, like water coming to boil, the time hazed into one expanse and fogged up my glasses. Most staff on the unit are amazing people dealing with limited resources, abundances of procedures to follow and (of course) eleven mentally ill teenagers all needing care.

Out of time and out of date- a zombie apocalypse could have happened and I wouldn’t be aware. Five months on the unit is disorientating, I could be anywhere for all I know of the outside. I don’t know anything about the city I am in. But what has happened here? The time has been spent trying to get my see-saw of symptoms somewhat stable. In these walls I have had a shield, every day the staff protect you from the monster inside your head and stop it from hurting you. Because that’s what it comes down to; the person and the illness. In a car you can see who’s driving, in people you can’t.

What have I not received? In the unit there has been very limited therapy. An hour of 1:1 psychological therapy a week tops. In my experience this wasn’t anywhere near enough to combat the 24 hour symptoms of my illness. I haven’t been cured, but I wasn’t expecting that. Well maybe I was a bit. I want to learn to manage my brain, but I haven’t had the specialist help to achieve this as much as I hoped I would. This makes me sad. But Heron has undeniably kept me alive with this terminal mental illness when I don’t think anywhere else would have been able to. I can only thank them for that. These conditions have made me really try to stop living, just stop, because it is too painful. Without being on the ward I don’t think I’d be here to write this.

I am moving to a new unit in the next couple of days, but I plan to schedule some blogs in which I will talk about my experiences in *Heron and my overall findings as a CAMHS inpatient. The posting may not be regular because it is rare to get internet/sim opportunities but trust me- I am still writing and doing my best!

In the meantime I am just a very impatient inpatient fighting to get better.


Before You Read: The CAMHS Inpatient Chronicles

It’s an odd feeling to write down memories- they are like moths in my head with fragments slowly disintegrating in the light. Please excuse the date, I am actually writing this in 2017. The reason this post is dated 2014 is because I needed it to appear first in this section of this blog. This is your guide for what is to come. 

This category “The CAMHS Inpatient Chronicles” runs from the beginning of my inpatient journey to the end (ascending order). We start at ‘If’ (the next post) and go forward in time from there. The reason I’ve done this is that several people have requested an easier way to read the whole series of blogs. So, as I’m looking at this chronicle again anyway, I have decided to do something new: rewind blogs. 

img_0523In my first unit in particular we had no access to the internet or mobile phones. Even though I was an avid blogger there was nothing I could do to record what happened in those months. So with the help of others who were on the unit at the same time as me and the scrapbooks I kept along the way I will to fill in some of the gaps. These blogs will begin with the ‘Rewind Blogs’ image and will be in a dark green colour. Please note that these blogs are written in hindsight and dates are approximate. It is really important to me that I get these memories down and this is the best way I could think to do it. I want to protect the integrity of the blogs I wrote during this time- but also get out the things I couldn’t publish back then. If you are subscribed you will still be notified of a new post as normal- they will just be dated 2014/2015 instead.