Tag: CAMHS

Mental Health Service Transitions – It’s No Fairytale

Cinderella finally felt like she was growing into her glass slippers. She had found her diagnosis, a psychiatrist who ‘got’ her and she was awaiting therapy. The beautiful recovery she dreamed of was on the horizon.

…But then…

The clock stuck twelve and before cinderella knew it she was different. She didn’t look it and she didn’t feel it, but according to everyone else she was. Cinderella had turned 18 years old and now legally an adult she was told to battle her illness alone. Her mental health team disappeared overnight- replaced with a harsher adult services team. They couldn’t see Cinders as regularly and had even longer waiting lists for therapy than CAMHS did. Things that she was encouraged to do in CAMHS she got angry letters about from adult services. Suddenly Cinderella was lost. She was just as ill as before the clock struck 12- she had the same symptoms and felt the same- but suddenly she had no help. She had to get a grip but she was slipping. She was now on her own.

This is the story that many young people find themselves protagonist to when they turn 18 within children’s mental health services. The handover to adult services can be baffling, abrupt and overall more harmful than helpful. As it is Children’s Mental Health Week I wanted to talk about this issue as not everyone has the happily ever after of walking away from CAMHS and never looking back. For those left in the system the transfer can make them feel lost and abandoned.

There is a growing campaign for an 18-25s transitional period between the two services. What a dedicated service in this area could achieve would be phenomenal. Young people could have their appointments grow slowly further apart to avoid sudden changes and subsequent feelings of abandonment. The responsibility in care could shift slowly to the young person when they are post-18. This transition stage could also be really valuable for learning necessary skills for adult life in a way that is conducive to mental wellbeing as a whole. In the transition young people could move care team one practitioner at a time- first key worker, then psychiatrist and therapists so that the process is gradual. A more in depth series of Care Plan Approach meetings could take place with both adults and children’s services to discuss what the young person found useful in CAMHS and how that can be carried over for the future. Medication could be altered during the transition by both psychiatrists. Particularly if a young person has been with CAMHS for quite some time the psychiatrist-patient relationship is infinitely valuable. Young people with mental health problems don’t all send out the same red flares therefore longstanding professionals who can smell the smoke make all the difference. Changes to medication should be made subtly and with respect to the young person and the lifestyle they need to uphold whilst dealing with possible side affects. Being 18 is stressful enough with exams and uni approaching and all the responsibilities that becoming an adult brings. It seems counterproductive and cruel to change an 18 year old’s care so dramatically at such a challenging age.

When I moved from Children’s to Adult care I found the difference in practice frightening and it led me to wanting to discharge myself from the service altogether. I was told that I was the only person that could make myself better and all carers were instructed to blank out my symptoms until I pulled myself together. Not only is this upsetting but it is dangerous. The work CAMHS had done to slowly build my trust in professionals was gone within a few dreadful meetings with the Community Mental Health Team. Young people turn 18 and drop out of the system, not because the system has cured them but because it has broken them too badly. This is not good enough.

Cinderella could have gone to A&E six hours before she became an adult with self injury and depression. As a seventeen year old she would likely have been admitted. Six hours after turning eighteen she would be sent home. Do we really believe that a magical chemistry takes place on an eighteenth birthday- rendering a child able to take on all their struggles alone? I don’t think so. It’s important that there is a true transitional phase so that this problem doesn’t occur in 25 year olds instead. It’s not that young people are not responsible- it’s that the difference in practice is so dramatic there is a canyon between the two providers.

Extra reading-

Emerging Practice: Examples of Mental Health Services for 16–25 year-olds

 

The Findings and Thoughts of a Newly Released Inpatient

  1. Toilet seats are very underrated.
  2. Oh shower with temperature control I love thee…
  3. AND I don’t have to dance around to keep it going.
  4. Sleeping in is a simple pleasure.
  5. There’s food that tastes like something I would want to eat here.
  6. Windows and doors that actually open are fantastic.
  7. Fresh air has never felt so good!
  8. I can even do my own tea the right way. In case you need clarification on this: water, teabag out, sugar THEN milk.
  9. The reality of having more than the same two options every day for lunch is mind blowing.
  10. Toilet paper in the real world is so soft!
  11. Go out? Now? Brilliant!
  12. Watching something on TV at the same time as everyone else rather than slumping over iplayer is doing wonders for my Twitter life.
  13. Space to dance around in is a good use of space.
  14. Support workers? Who have time to support? Wow.
  15. Having free reign of my phone feels so good.
  16. It’s a pain having to walk more than a couple of meters to see a doctor.
  17. The real world is a lot calmer than the inside of a CAMHS unit.
  18. Bedroom access is useful during the day for quick naps or picking up forgotten items.
  19. Space to hang my clothes means I don’t have to work the crinkled bag look.
  20. And just the knowledge that I’m no longer in hospital is pretty amazing in itself.

  

Why I Might Need to Say Goodbye

Through being in hospital I have come into contact with around a hundred other young people. Possibly more. Some were just brief acquaintances- admitted for a day or so and some I built friendships with.  But there are a lot of people who I won’t stay in contact with post-discharge. I have to let go.

In particular I am talking about people who I follow online who share their struggle with the world. Like me they share experiences but most do it through social networks. Minute by minute highs and terrifying lows. Rushed instagrams about pills and razors. I have called the police several times for several people who said they were trying to end their lives online. Every time I stayed up all night until the police got back to me and said that they were fine. My OCD goes overboard with the worry and it is frustrating to be so useless in a situation. I know these posts are sometimes cries for help or attention but if something happened I couldn’t live with myself. What if they are doing something bad but no one else hears the cry? 

I’m not going to lie- this action is completely selfish. I can’t cope with what I’m seeing. I know that some people feel great benefit from lsharing during their deepest darkest moments but I personally don’t. This blog is written in hindsight. I would never post anything that would make people concerned to the point that they would phone the police. Truthfully this is because in those times I don’t want anyone to save me so posting would be an unnecessary risk. It has never occurred to me to publish that I am in the process of, or planning to, hurt myself. I talk about the times I have been- but I am always standing in a better place when I do. Sharing my story and my experience is my attempt at awareness raising so I try hard to keep my blog rational, honest and informative. 

When I go on social media I don’t want to be reminded of my time in hospital. Hypocritical as it sounds from a mental health blogger, I don’t want to look at it. I’ve had traumatic experiences involving other patients in hospital and though people didn’t mean to hurt me the memories spark from the smallest of posts. I need to process my experiences for myself and having other people rip off the metaphoric plaster and making me remember is hard. Plus when you struggle with thoughts about weight and food the last thing you need is a selfie by someone who hasn’t eaten for a week or a picture of a salad they’ve nibbled when you just fought the demons and ate a burger. I know that behind the usernames they are struggling, even if they do not realise it. However, for people trying to recover, following those accounts is the equivalent of swigging G&T at the back of Alcoholics Anonymous. 

I want to make clear that I do genuinely care about everyone who I have met during this process. I really do. I wish them nothing but positive things. But I’m not able to actually help any of them, and by trying to I am hurting myself. I write letters to people I want to stay in contact with because the fact that they take a while to produce and arrive means they are less spontaneous. Where as with a few taps of a finger you can share your perils online. I might follow people on some platforms (the ones they share with family and real life friends) but not the ones they use to network with other warriors or vent. I feel safer like this because there are other followers who would be much more of a help than I if a crisis came about. I don’t even know the addresses of the people I was in hospital with and if something happens I can only offer the police a mobile number at best.

I won’t forget those I’ve met and I’m so angry that these illnesses have intruded into such vibrant young lives. I wish I could help more. If I do step away from you online; I hope you can understand that I wish nothing but the absolute best for you, but this is a step I have to take for my own recovery and I hope one day you will take it too.

  

Kids in Crisis: The Bits It Missed

Channel 4 recently showed a documentary discussing problems in Child and Adolescent Mental Health Services, focusing mainly on the country’s overall lack of child inpatient psychiatric beds and lack of early intervention provision. Over the past year I have noticed many news articles and reports on these subjects. But there is one thing I think they missed.

Yes there aren’t enough CAMHS inpatient beds, but there also aren’t enough staff to cover the ones we’ve got.

In both CAMHS inpatient units I have been to there have been serious problems with staffing. Friends of mine have confirmed experiencing the same problems in other units. There are often not enough regular staff who work on the ward on shift, so numbers have to be topped up with bank or agency staff. Sometimes these workers become regulars on the unit, thus getting to know patients. However a lot of the time they are coming on to the unit for the first time, know none of the patients and have very limited experience of the setting. In one of the CAMHS units I went to, which was a closed unit, patients used to use the ignorance of the agency staff to break the rules. One of the most notable examples I remember of this was a member of agency staff being persuaded by patients that the toaster could be plugged in in various bizarre places around the ward. This resulted in patients being found smoking in an ensuing after lighting cigarettes from the toaster. It’s funny but there are many other examples I could give ended with a patient getting hurt.

Having a team of regular staff covering a shift is vastly different to having numbers topped up by agency or bank. Funnily enough patients, often with complex past relationships with adults, tend not to open up to relative strangers. Though these workers count as bodies on the ward a lot of their work is observation and directing regular staff to the young people who need them.

If there were enough staff in each unit the quality of care and patient turnover would be much higher. The increased knowledge built up over time of patient’s case alone can make a huge difference to care. Bank and agency staff get a short handover about the ward and the patients however the information given is based on what has happened recently. Staff nurses and health care assistants who work on units regularly will build up the trust and the life story (often quite complicated) of a patient; thus helping them identify crisis triggers, early warning signs and risks.

The documentary did portray really well other points, such as how children and young people can be moved all over the country from hospital to hospital and how this is often a fast decision based on their condition fluctuating. I felt sorry for parents who had to deal with their child being passed around, sometimes hundreds of miles away from home. Dealing with relapse is hard enough but if it results in more moves and being further away from home it will be even more devistating for patients.

Some psychologists are campaigning for CAMHS services to cover up to the age of twenty five. I will probably write another blog about this soon as it is something I believe passionately in. The move from children to adult services is drastic and for many traumatic. The attitude appears to shift from CAMHS teaching you to cope with what you have to adult telling you to just deal with it. There is a huge difference.

A mother expressing her concerns over her daughter becoming institutionalised made me think of the many, many, young people I have met for whom moving from unit to unit has become a way of life. I have met patients who have been in hospital for years at a time. That is years of living away from home, years out of education and years without socialising with people who are mentally healthy. Who can blame these young people for becoming comforted by the safety and routine? Especially when many will have had bad experiences with outpatient care or have difficult home lives. These units are vital but there needs to be clear paths for patients to move on.

To sum up:

  • We need to staff the beds we have appropriately to improve the safety and the treatment of young inpatients. Then we need more beds.
  • Families should not have to wait for a young person to deteriorate in order for them to become an inpatient to get the treatment they need. Early intervention must improve.
  • Ideally every region should have some sort of provision for mentally ill young people.
  • Where possible young people should go directly to the most suitable security level provision to avoid more moving, and disrupting other patient’s care in lower security units.
  • Young people should be covered by children’s and a transitional service until the age of 25. The 18 – 25’s bracket could be used as a transitional stage between the two services and their massively different approaches.
  • There are so many things that need to change. 6% of the Mental Health budget is not enough to support the country’s mentally ill young people. 

 

So Called Safe

Times like this I shouldn’t be here
Its not stopping my stress it’s stemming it
I’ve been helped
alongside the girls who eat tape measures
and the boys who breathe fire.

But I’m angry that as I lie in bed
I’m whispering to my pillow
“The door’s locked.
The door’s locked.
The door’s locked.”
And for once it’s not the OCD talking.

I’m scared because they’ve been kicking the doors in for hours
and we are three members of staff down
and as they storm the siren screaming doors
the agency blokes don’t know their names
to phone for the police.

But what are parents supposed to do?
When Seb is sixteen and suicidal so sent to be safe.
The psychiatrist is supposedly stalling their son’s surge for suicide.
But in a moment Finn throws a fist and Seb’s got stitches.
Seb’s mind must be bad for six stitches to be the safest.
How scary is that?

The ceiling screams when we do,
Staff scatter.
Skin splits.
And sewn on the skin of my teeth
Are slideshows of scenarios
Seen in children’s psychiatric settings.

But we’re safe. Right?

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?  

Bollocks to BPD

Diagnosis ain’t easy.

I first heard of Borderline Personality Disorder (BPD) at Heron. The psychiatrist there seemed to be trying to fill a ward quota of 25% of female patients being diagnosed with BPD. I wasn’t in that percent.

The next time I heard it I was sitting in my CPA meeting for professionals. My new psychiatrist reeled off my conditions and then the letters- B.P.D. After the meeting was over and myself and my key nurse were on our victory lap around the village I asked if she’d heard it too. She wasn’t sure.

I asked for confirmation when I saw the doctor next. He quickly drew a grid with numbers and the disorders I have come to know. Then there it was- BPD. He said something about how this is what he suspects my problem lies within- my Jabberwocky to fight.

“Personality disorders have a stigma to them.” He added. “But don’t worry, it’s not the one serial killers have.”

Looking it up on the Internet isn’t pleasant. People with BPD were clingy and unstable. All the stories I could find were negative. ‘WHERE ARE THE REAL PEOPLE?!’ I found myself mentally screaming. And I’m ashamed to say I didn’t want to make myself one of the few who spoke up. The stigma seemed huge. But if no one speaks up, who else will be scared into silence by this monster? I tentatively took my first move with my poem borderline and now this.

To make matters worse in my quest for information, symptoms listed on every website I searched seemed increasingly vague or scary. Out of desperation I hit the books and surfaced with “Sometimes I Act Crazy“. Which gave me the broadest picture of the disorder and those living with it. I would highly recommend it for anyone else scared away by the Internet.

I think the description of BPD on rethink is the best:

  • “Borderline personality disorder (BPD) can mean that you are prone to strong emotions, mood swings and feelings you can’t cope with easily and may feel distressed a lot of the time.
  • Around 1 in 100 people have BPD.
  • There may be different reasons why someone develops BPD.
  • There are a number of different approaches to treating BPD, most of which include different types of one-to-one and group talking therapies.
  • Complications can arise if you have BPD, including problems with substance misuse and self-harm.”

It’s still vague; but every warrior is different. The thing with mental illness diagnosis is that it says more about your past than your future. My brain developed a little different. I see and hear things you can’t. My moods swing in ways you can’t predict. But whatever it says about me now, or me then, I am going to have CONQUERED my Jabberwocky soon. Just you wait. It doesn’t matter what it’s name is. If it is one disorder or three. It’s going down.

And then I will stand in the street; in the rain, in bare feet and scream at the top of my lungs: 

“I made it!!”

And I don’t care who hears me. 

 

Because I’m getting out alive.  

The Life of Robyn- Let’s Evaluate and Do Something

This is my blog following the catchily named ‘Discover’ Children and Young People Evaluation Workshop. I hasten to add that there was no ”s’ on the end of ‘people’ on the sheet I have, probably because this was a gathering mostly for professionals who work with and around the Children and Adolescent Mental Health Service. It was not an event for the direct attendance of service users, but it was certainly a day with young people completely central in all points of discussion. Sitting at the tables were the people who can actually change things.

It started at *Cheery Lodge a few weeks ago with a group of patients and a pretty awesome storyteller. We were told about an enquiry into the CAMHS service which is currently taking place in our region. It is called Discover and we spent a very long session discussing the imagery used to represent the process. This was a logo of a missing puzzle piece being slotted into place within a silhouetted head. Is it too simplistic? Is it implying that there is just a missing piece that we as services users need to be given in order to be cured? Does it imply that we are broken? We weren’t sure.

Our awesome storyteller asked us to create a character together to use as an Everyman in all of our stories. We came up with the name of Robyn (unisex) and formulated the average age of sixteen. We left it at that and then set to telling our own stories through the life of the elusive Robyn. Poor Robyn had a multitude of lives- in some making a full recovery, winning the lottery and beating the system and in others being homeless and ending up stuck in an adult inpatient facility. We audio recorded our stories and then added pictures in order to create a presentation.

Myself and *Izzy decided we would quite like to go to present what we had made to the big fishes of CAMHS and other services. A room smelling of coffee and pens was the venue for all the big bosses. As Izzy said: “Adults talking adult stuff”. “They’re just people. Just like you and me.” I whispered back before suggesting we get involved in whatever they were discussing in order to prove this point.

A minor crisis occurred at the start when the audio part of our presentation refused to co-operate with us and despite our increasingly desperate pleas it continued to make demands for a file type we had never even heard of. Having only a first draft of the recording on paper we had to improvise big style by reading the transcript out and improvising the bits we had added in after it had been printed.

Unable to read the tiny words of our notes I had to reduce my non-existent professional image somewhat by borrowing a very kind gentleman’s iPhone, hastily panorama photographing some paragraphs and blowing them up. My own iPhone camera had been disabled on admission to *Cheery Lodge in order to protect patient confidentiality on the unit and such. Thank heavens for understanding and generous people because the loan of the phone was what made it possible for me to take part as planned. We made it through the presentation and got really good feedback.

Suddenly these professionals didn’t seem as big and scary. They were just people. Trying to do their best for so many young people who’s stories are so hard to follow. They did truly listen and pick up on the points that were made- early intervention is needed, more awareness and more training for physical health practitioners. We discussed how differently the subject of mental health is treated in comparison to physical health. One is the train platform, common ground and a safety zone to be observed and preserved. A talking point in a classroom and a measurement in the doctor’s office. The other is the railway track- vital but understated and yet live and silently taking casualties. Sadly the gap between the station platform and the railway track is vast. Far too vast.

When I do this kind of thing I always judge how well a presentation has been received by comparing the initial reaction to my guide dog with the end reaction to the talk. No matter how ignored I am in comparison to my furry companion at the beginning of an event I don’t mind as long as by the end people are more interested in the point that I am making than what my dog eats. Judging by this theory I think myself and Izzy pulled it off big time despite huge initial canine interest!

I did give my blog a cheeky plug at the end as the ‘Inpatient’ blogs I have done recently are all about CAMHS and the opinions of myself and others I have met. I hope they can do some good. If you are here for the first time- welcome. Please take a look around and if you like what you see I would encourage you to subscribe and hang about. The truth is that it’s all very well sitting and talking but mistakes need to be learned from and things need  to be improved. The message of today was definitely one of hope and change. One size will never fit all, but we need to stop so many people slipping through the net and I am so honoured to be a small part of trying to make that happen.

A Gnome-Like Creature Has Not Told Me The Name of This Emotion.

I was sitting in my ward round meeting at *Heron Unit. Scattered around the room were a psychiatrist, occupational therapist, doctor, teacher, a nurse and a secretary whom patients indirectly referred to as ‘skinny cow’. Because she was… Skinny… And we didn’t know much more.

Last week I chose to only speak French at ward round. The week before I brought an elephant finger puppet to confer with. The amount that the professionals listened to patients in ward round was debatable, therefore all patients either humoured it or were fearful of it. This week I’m just tired. It’s 4pm on a Wednesday and I am in my pyjamas. At 4pm of any day I am in my pyjamas. I sleep all day and do mindless and isolating tasks all night until the time just tumble-tails into a non-descriptive blur. I eat the same thing every day and am afraid to leave my room.

“How has your week been?” The psychiatrist asks. He doesn’t read the letter I have handed him explaining exactly how my week has been. My voice feels shrivelled and the usual silence spreads as I feel the heavy weight of being psychoanalysed.

“Erm… It’s been… Okay.” I respond in an unintentionally vague manner as I turn my guide dog’s ear the right way round.

“Okay?” He asks. He gestures for me to elaborate.

“The black hole in my chest is back.” I exhale.

“What do you mean? You feel sadness?” He probes.

“I’m not sure. It’s just a big black hole of nothing in my chest.”

This is the way I describe feelings because to me emotions are never stand-alone words. They are so much more. They make your body feel and function differently and change how you perceive the world around you. They are the most powerful things in your universe. Plus asking me to summarise how my whole body and mind feel with just one word seems silly because I, like most other humans, have not been followed around by a small gnome-like creature holding a placard to tell me which emotion I am feeling every five minutes. Therefore- how does anyone know which word fits what feeling? My perception and experience of ‘sad’ might be at the other end of the spectrum to somebody else’s experience of the three letters.

Hence the big black hole. The big black hole that sucks up my life and leaves me rigid. Other descriptions I have given include: ‘frozen limbs’, ‘the hot coal instead of a heart’ and the ‘burning arms’. I got by in such meetings by just continuing to elaborate on my descriptions until eventually the psychiatrist stuck the described emotion into a pigeon hole with a name and kept it there.

I was shown this picture recently and it made me smile. It is a representation of temperature in the body on feeling certain emotions. Note how ‘Depression’ is cold limbs and literally a big black space spanning across the torso. I guess my description wasn’t too far out.

Feelings aren’t words. They are novels.
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