I was delighted to be asked to complete a cover piece for the brochure of York Disability Week 2020 by York Human Rights City. As soon as I was asked to do the piece I knew exactly the team I needed to assemble- Mouse, Badger, Squizzle and Hedge. Where better for them to go to represent York? Clifford’s Tower!
To see the full program of events see York Disability Week website here.
Since becoming an occupational therapy student I have found that professional use of social media can be a great source of information and experience. Reflecting on the warnings given to us in a lecture about social media use and the Royal College of Occupational Therapists Social Media Guidelines, I felt it would be a good idea to make some kind of disclaimer about how I intend to use the online space.
During my first year at university I began to feel like I had two lives- ‘OT life’ and ‘Art Life’. In my art life I create work about my experiences with disability and mental illness and hopefully make people feel less alone. My art life has been in place for many years. However in my OT life during my first year I aimed to be the polished professional, a concept not cohesive with my art life in the slightest. The polished professional is healthy, well, and on most topics very neutral. So I, a disabled woman actively campaigning and lobbying for policy change, felt like I may have made an error in my online presence. I ran through mentally if there was a way of finding a new pen name for my art life to siphon it away from the occupational therapy world, but six years down the line I think that ship I feel has long sailed. I thought about how I could ‘scrub the decks’, deleting more political or confronting content left right and centre. But trying to separate my two professions felt like trying to unravel matted wool, because in some sense they feed into each other really well- my experiences as a patient will no doubt will make me a better professional. But in having shared and continuing to share things about my health (mental and physical) online I have no doubt some people will think of me as unprofessional.
My interpretation is that having one self, with occupations that are deeply important to that identity, combined and owning our lived experience is central to the ethos of occupational therapy. Following this, my art life should be part of my being. On this site I have anecdotes dating back to 2014 from when I was a CAMHS inpatient, experiences dealing with mental health services, and living with disability and mental illness. I’ve been told over the years that these blogs have been useful for many people. I’d never shared anything that I wouldn’t want the public to know, I’m not ashamed in any way of these experiences and really don’t mind who knows these things about me. I rank it in the same class as people knowing my birthday. Due to developing a significantly better writing style over the years and the fact I had no idea I’d be a trainee healthcare professional when I wrote these blogs, I am reviewing them and editing where relevant. Many of these posts will return back to the site and I hope they will go on to help more people. I might even write more looking back on those days. I feel especially with the strength of hindsight these blogs demonstrate how things do change and things do get better eventually.
As a disabled woman it can be hard to hold my tongue at times when politics seems to do nothing than beat people like me down. The activist in me finds it incredibly hard to remain neutral as guidelines suggest. At the end of the day I will always stand up for the rights of disabled and vulnerable people, no matter who it is I am having to stand up against. I will celebrate successes and contest injustice, no matter what the political party is. In my mind, what kind of professional would I be if I didn’t?
So here’s a promise.
I will never participate in (or tolerate) hate speech or discrimination towards any minority group.
I will always stand up and fight for the rights of vulnerable people.
I will, to the best of my ability, share the most accurate and current information possible.
When posting about my own mental health I will never publish anything that will make people concerned for my immediate safety.
I will never identify service users online or break any confidentiality agreements relating to them online. I will also only identify colleagues with their specific permission to do so.
If I make a mistake I will apologise wholeheartedly and do my best to put it right.
I realise this may seem a very odd post, but I feel if I have this written out I am making clear my expectations of myself and what others can expect of me. If any of this is contrary to guidance or unwise I would appreciate input on this from colleagues.
“A doctor will add days to your life. An Occupational Therapist will add life to your days.” – Unknown
This week has been #OTweek, where we raise awareness of occupational therapy (OT) as a profession.
What is Occupational Therapy?
Occupational Therapy is about quality of life and what we as human beings choose to do with our time. Where doctors extend your life, a good OT will help you find things that improve your life and wellbeing. Whether it is hobbies like cooking or knitting or helping you improve your independence or motor skills: it is about what the service user wants and needs to do. It is less about the impairment and more about the person. Occupational therapists put the person first and work with a wide range of people from every level of society and ability.
This week also happens to be the first week I have gone out into the world as a student OT. So far I am loving my work in a neurological rehabilitation centre and the wide range of work OTs do there. The work is hard but rewarding. As a disabled person myself the ideology of occupational therapy really resonates with me. It seems the perfect balance between practical and medical intervention for an illness or condition, and helping people achieve their aspirations in other areas of life such as hobbies. After years of studying to get on this course- I am finally on my way to reaching my OT dreams and am proud to be rocking the bottle green flares!
Follow my Mouse artwork on Instagram @upsidedownchronicles.
2014 was the first. Having been incredibly ill all year I knew I had failed. Everyone told me I hadn’t, but I knew I had. I hadn’t been eating properly or sleeping for weeks and had fallen asleep for part of two of my exams. The day before the results, my psychiatrist told me down the phone that I was having a major depressive episode and needed an ambulance immediately.
2015 was the results day where I had no results. I had been in psychiatric units for the entire year and was reflecting on the year before’s experience. I wrote a blog about it ‘FACED BUG – Some Results Day Rationale’, and ultimately realised that no exam result was worth being suicidal for.
In 2016 I worked hard on my AS levels all year and, despite still acclimatising to the outside world, I did well in English. I also got a very unwelcome ‘U’ in French. Obviously, being me, I internalised it and declared to myself that I was stupid. It was a couple of weeks later when my paper was sent back that my tutor realised that the awarding body had managed to lose the majority of my A3, neon yellow, exam paper. Instead of noticing that things were amiss the board merrily awarded me their lowest mark, a U. After a complaint I got a C grade based on the one questions they did manage to keep hold of.
This year I was incredibly nervous. I didn’t know what was going to happen. This year was different in that I had been in touch with my dream university and had asked about applying for 2018. I had accesss problems in one of my exams, which as always I worried would affect my grade. I arrived at college clinging to my Dad and softly hyperventilating. We went to the desk and got the envelope. The exam officer, a complete star, appeared at my side. “I want to be here when you open this!” She said.
‘Oh boy’ I thought. ‘She’s making sure she’s here to pick up the pieces. It must be bad.’
She smiled and opened the envelope. I got an A* in English and a C in a very hard French paper. I’d even got an A in my French AS resit. I couldn’t believe it. It’s the first year that anyone from college has been there when my results were opened, it’s the first time people smiled and the first time my Dad cried with happiness. It’s the first time I’ve been in disbelief because the news is good and the first time the conversations about ‘next steps’ have been positive.
I guess what I’m trying to say is that once I decided that my mental health was worth more than exams I was actually able to do better academically for it. That first year I stayed up all night studying for weeks on end. I was ill but wouldn’t stop. It did me no favours at all. Okay, my friends from high school are well into their degrees by now, but I now realise that I do things in my own time and in my own way. I’ve got my own beat and my own drum and I definitely dance to it. Your mental health is so important. Years of being mentally unwell can’t be retaken and they are so much more regrettable than a disappointing brown paper envelope. Look after yourself and take your time, good things do come to those who wait.
Today I turn twenty. Most people will celebrate their 21st birthday as the major milestone, but I’m partying today. Well when I say ‘Partying’… I’m drinking tea and feeling grateful. Partying.
To put it bluntly: I’m here. My teenage years are over and I made it. I got through. I did it.
This may sound over dramatic, but there were many times where it really was a close call. It’s hard to look back, but I am proud of myself now, really bloomin’ proud. Ten year old me wouldn’t have been able to dream up all the things I am doing at the moment. I hit rock bottom, yes, but the only way to go from there is up. I live in fear that the lowest of low will return one day and I won’t be so lucky, but hitting the bottom of the pit turned out to be a catalyst for change.
I feel such relief. Relief that I wasn’t allowed to just die. I am so grateful to those who brushed the dirt from my face, inspired me and believed my life would change. They dreamed of what my life could be like when I couldn’t dream it for myself. They encouraged me no matter how many times I screamed at them to give up. I can’t thank these people enough. You saved me.
I don’t think anyone could call me mentally well, but it’s not terminal. My illnesses aren’t going to kill me anymore- with the help of a whole lot of medication.
The day I am editing this (may the 12th) is international nursing day. So from the bottom of my heart thank you to those nurses who gave friendliness along with professionalism. For the hours I’ve had them by my side and for the hours I’ve cried on their shoulders. I’ve met nurses who are unshakable: They can handle any combination of crises and chaos. They are rushed off their feet on busy wards but still pop in to check that you are okay. The best nurses I know give more than just medication, they give genuine love and care to patients.
The film includes interviews with people who suffer fromOCD. It puts right the public perception that OCD is about ‘just being tidy’. It is shocking and eye opening in all the best ways, and truly shows the many forms this disorder can take. I’d really like to praise and thank all the contributors, as well as Claire of course, for being so honest in their accounts and for allowing them to be shared. Some of the testimonies brought tears to my eyes because I could relate so strongly. If you have OCD this film will show you that you are not alone. If you don’t have OCD- this film will open your eyes and make you grateful you don’t. I seriously believe that this film is an epic step in the right direction for OCD Awareness and understanding.
I found out about ‘Living with Me and My OCD’ a couple of years ago. I was intrigued and excited to hear of a film exclusively about OCD and, even more excitingly, one that is directed and produced by someone who actually has the condition. I knew straight away after being in contact with Claire the producer that she would make sure that this film would give the best insight into OCD as possible. Recently the film came out and there was a screening event in Claire’s hometown of Sheffield. The film is now on OCD-UK’s youtube channel and has been praised by OCD Action.
New year is difficult. You feel the pressure and exhilaration of trying to make this ‘your year’. If you have OCD this can become a compulsion. All year long I promise myself that I would do better on a huge array of things. Some people call it determination, I wouldn’t say that. It is constant feelings of disappointment and perfectionism and it is intensified by the season.
For example last summer I received my AS level results. I opened the envelope and was relieved that I had done well in two exams but received a ‘U’ in my other subject’s main paper. A ‘U’ is actually worse than a fail, and as I had received pretty respectable grades in mock exams despite being poorly I had no idea how I’d managed to get such a low grade. Had I gone into an episode during the exam? Somebody would have definitely noticed. Anyway, I went home in tears and used a drawing pin to attach the piece of paper to the side of my wardrobe. The purpose of this was to ‘make me work harder’. I knew deep down that I had worked hard anyway and that the grade was unusual for me, but I accepted and internalised that it was because I was rubbish.
A week or so later my tutor ordered my exam back to see how I’d got it so terribly wrong. She opened the paper and found that three quarters of it were missing. The exam board had lost all but one of my questions before marking and I was given a U. It wasn’t my grade after all and so it got corrected, however the piece of paper is still nailed onto my wardrobe. I must be a glutton for self torture.
The same thing haunts me with coursework. It takes ages as I read it again and again irrationally fearing it contains a murder confession or expletives, I can never hand it in because there is always something in my mind that I need to add or do to make it ‘better’. I set a lot of resolutions this new year, most of which talked about improving on 2016. What I didn’t think about when writing them into the front of my journal was that last year wasn’t a bad year. I wasn’t locked in a ward and there was no major traumas. It was pretty alright by previous years’ standards. By desperately trying to improve too much, mostly on things I can’t change, I will likely send myself back into oblivion and that would not make 2017 good at all.
This is a rambly post because my head made the first post of the year into a big deal, when actually it shouldn’t be. What I’m trying to say is:
Just try not to have a worse year than the one before and do what you love. That’s enough.
Two years ago I was in the back of an ambulance.
I waited in A&E for my turn.
I got out 369 days later.
It was a bloody long turn.
In the first six months I learned:
They could restrain me,
They could drug me,
They could detain me,
But I would survive.
I could survive:
Being forced to eat,
and my heart would still beat.
After the tyranny freedom was elected.
I was no longer an animal- held down and injected.
I found that words made me lighter,
Each time I said or read them I shone a little brighter.
My talents lay in living and not dying
and every step forward is a person I’m defying.
Once it is broken the glass does not fear the floor.
Tell me I shan’t.
Tell me I can’t.
I’ve heard them all before.
But I promise that it is okay for you to feel like this. You don’t have to pull yourself together.
I understand that everything is too fast and you feel too slow. The world hurts you every time you leave your bed. You feel pain as you bounce between every anxiety-made impossibility.
I want to tell you something: it will get better. Even though it doesn’t feel like it now and it sounds cliché: this feeling will pass. You couldn’t feel any worse at the moment so the only way is up. I can’t tell you when or how your mood will shift, but it will. Remember that you have a 100% success rate of surviving every tough day life throws at you. You are a fighter.
Look after yourself. The more you care for your mind and body the more likely they are to co-operate with you. It is like having a pulled muscle. Maybe you overdid it. There are ways to make the pain lessen and one day you will (at the very least) feel just a little bit better than you do now. Even if you think you will never heal completely because the depression is too deep, try to master the baby steps. Learn to doggy paddle to stop you sinking. I’m not going to tell you to do anything radical, or that there is a ‘cure’. I won’t instruct you to go vegan or try oils or ‘find yourself’ in a desert. I’m just going to tell you to fuel your body with good quality food, fluids and thoughts.
Make yourself feel nice. Get in the bath and wash your hair, brush your teeth and all the other things that you do before you go out somewhere nice. Don’t worry- you don’t have to actually go out. Just make yourself feel great in a clean pair of PJs with freshly-shampooed hair. Practice painting your nails or use a really nice moisturiser. Make your body feel special.
Breathe. Dearest person please breathe. Every now and again count your breath, breathe longer out than you breathe in and pause for a second in between. Get music in your ears, happy and sad. Scribble in a notebook. Re-watch anything you fancy. Do the things you often wish you had time to do. Invest time in yourself.
Find a cuddle. Even if it is just with a blanket or a teddy. A pet or a person, get a hug. You feel numb right now but other people can still feel you. You are still with the rest of the world, no matter how much it feels like you are not.
You are never alone. So many from all over the world, past and present, have been where you are right now. Find them. Get on social media, read books and watch documentaries. People are out there. The internet is a fantastic resource and people going through similar experiences can provide amazing support. There are people in the same dark place as you and people who have escaped it, using techniques that you might not know yet. Knowledge is power, so learn from them. Don’t cut yourself out of the real world though, keep talking to your friends and family even if it feels like you have nothing to say. Tell someone you trust how you feel and you will find even the most unlikely people have suffered with mental ill-health too.
I might not see your face or know your name but I care about you. I don’t know if you are like me: with the knowledge that you will to and fro between this place and a better one for the foreseeable, or if this is the first time that you have ever felt this way. Either way it is frightening. I can validate here and now that what you are feeling is really tough to deal with. I don’t know the details of your situation but I know you feel broken and that really hurts. You have survived every day so far, even when you thought you couldn’t. I know that you can do it again today.
As I move from the care home to an adult fostering placement I cross an invisible boundary between mental health services. Moving across borders within the NHS is somewhat like going on a pilgrimage for treatment. Before you go you are promised that things are brighter on the other side: more resources, more funding and more staff. My voyage -from an area which didn’t have a pot to put pessimism in as far as mental health services are concerned- was tough. The new team didn’t pick my case up for over a month. The team I had moved from, clearly glad to see the back of me, didn’t send any notes over at all. They probably burnt them all in a bonfire to celebrate my departure. Frustratingly this means I haven’t received the findings from the psychological assessment which I waited six months to complete. Three hours of shaking and crying and no one seems to have bothered writing it up. Ho hum.
One thing I have discovered about moving is that community teams like to do their own thing. They trust their psychologists and their psychiatrists, so even if you come brandishing a 100 page assessment they will likely still want to conduct their own. I’m in a bigger team now, so thankfully the waiting times are shorter. I’ve also, for the first time since leaving CAMHS nearly a year ago, been granted a community psychiatric nurse- something that a staffing crisis caused short supply of in my original county.
So I have a community psychiatric nurse, or CPN. A CPN’s job is to work with you towards recovery or towards getting some form of therapy. They know about medications and, hopefully, all the symptoms you experience. They are generally very useful people to have on your side.
When… Let’s call her *Sue… Turned up she had no knowledge of my background. No transfer notes and no discharge summaries- she didn’t even know that I had been out of CAMHS inpatient services for over six months. Nevertheless I was very glad to see her, with visits every fortnight and her specialism in mental health rather than social work she is the first mental health professional I’ve had regular appointments with since inpatient.
Being in a bigger NHS trust certainly has it’s benefits as there are more support groups and, though still not many, a lot more resources. Coming out of the first meeting with Sue I had a psychiatry and psychology referral- something which took an age to get in my old trust. Over the last few weeks I have been trying to get to know her as my CPN and tentatively hoping that the support won’t fall to pieces beneath me- a process I am too familiar with. In this scenario I appear to have benefited from the postcode lottery.
This is a very powerful short film depicting what it is like to live with borderline/emotionally unstable personality disorder. This disorder is widely misunderstood and stigmatised. I particularly like how it highlights ‘positives’ that can come from having the disorder.
“You are resilient and you try again. You’ve suffered so deeply, so much of the time. You push on; searching for love, hope and compassion.”
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 could. Noodle and Mél the hamster 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.
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.
The clock stuck twelve and before Cinderella knew it she was different. She didn’t look it or feel it, but everyone else said 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 harsher adult services who expected a lot of her. 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, like reach out for help when she needed it, she got angry letters about from adult services. Suddenly Cinderella was lost. She was just as ill as when 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 a protagonist in 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.
When I moved from Children’s to Adult care I found the difference in practice frightening and it led me to want to discharge myself from services altogether, despite the risks. I was told that I was the only person that could make myself better and the strategy from the adult team appeared to be that I should be ignored until I presumably got bored of being mentally ill and found a less destructive hobby. Not only was this deeply upsetting, but it was dangerous and ultimately made me worse. Within a few dreadful meetings with the Community Mental Health Team all the coaxing my CAMHS team had done to make me choose recovery was obliterated. In fact hope in general was obliterated. Talking to other young women who I shared time with at the CAMHS unit, many when they turned 18, voluntarily or involuntarily, dropped out of the system. Not because the system had cured them but because it had broken them too badly to continue. This is not good enough.
There is a growing campaign for an 18-25s transitional period between adult and CAMHS 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. The responsibility in care could shift slowly to the young person when they are post-18. This transition stage could 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 into their future care. 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. It seems counterproductive and cruel to change an 18 year old’s care so dramatically at such a challenging age.
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 and she would be sent home and told to deal with it herself. Do services truly believe that a magical spell occurs at the strike of midnight when a child turns 18? That they will suddenly have a zen-like wisdom about them and gain all the effective coping skills they have severely lacked? There needs to be a bridge over the canyon between services.
This post is a review of some awesome products from Stickman Communications– a fantastic company that supports disabled people through a range of quirky designs and sassy explanations.
I use their line of communication cards on a daily basis and was lucky enough to be sent a ‘Pacing Pack’ to review by the genius behind the designs, Hannah Ensor.
After a couple of months testing here are my thoughts…
Pacing Magnet Set
These magnets are really quite groovy. They cover all the days of the week, times of day, intensity levels of activities and also meal, snack, and exercise prompts.
I found being able to timetable my day really useful and the magnets acted as good reminders to add on easily forgotten essentials; like exercise and down time. There are enough magnets for you to either plan a day in detail or block out a full week. Included in the pack is a black dry-wipe pen and eraser. The magnets are quite small so can’t hold much detail, but I would suggest writing in the pen around the magnets if you want to add additional information. These magnets are really fantastic for seeing what a day or week will look like when you are planning. They stick really well to magnetic surfaces and are beautiful bright colours. They were originally intended for fridges but I like to stick mine on my whiteboard in my room so I can see them during the day.
Pacing Post-It Notes
The second part of the pack is this cute little post-it note stack.
They allow you to divide your day into three activity levels: ‘easy stuff’, ‘okay stuff’ and ‘challenging stuff’. I find these notes really useful because it encourages me to balance my day so that it is manageable. They stick really well to walls, boards, paper- anywhere you might need to be reminded about your plans.
Pacing Pack Crib Sheet
This is a handy little resource for people with fatigue problems and their friends and family. It is easy to understand, colourful and illustrated. Stickman Communications prides itself on its no-jargon resources, and this “Getting The Best Out of Life” sheet certainly follows that ethos.
I found this pacing pack really useful and I’d particularly recommend it to anyone who is newly diagnosed with a chronic condition or just learning to manage their illness. I’d also recommend it to any parents of disabled children who might need help with teaching their child how to plan around and for their condition. Good pacing and planning skills are vital for anyone with a chronic illness. I love the pack and would like to thank Hannah for allowing me to review it.
There is a group of ill children in hospital that probably never cross your mind. You won’t find them in slushy adverts or the subject of a charity single. Nor will A-list celebrities drop by their wards to wish them a Merry Christmas. They are mentally ill children and young people in inpatient psychiatric units. These children and young people are just like any in a hospital ward, they are away from home because they have an acute illness that needs specialist treatment. They don’t get the attention of celebrities or the tireless work of charities like kids with other illnesses do. For all intents and purposes mentally ill children and young people in hospital are all but forgotten.
So what is it really like to spend Christmas in a CAMHS unit? I found out last year. If I gain nothing else from spending Christmas 2014 in hospital, at least I have some experience to take away from it.
The setting was hardly festive; decorations on *Heron unit were extremely lacking since the unit tree had been taken away a few days before Christmas because the patients had found a way of extracting metal spikes from the artificial stem. Lights and tinsel weren’t an option for safety reasons so the only thing markedly indicating it was christmas was the occasional clipart snowman taped to the walls. Staff did their best to make our isolated snowglobe world festive with activities and films- but there are only so many paper chain and toilet roll tube crafts that depressed teenagers can partake in before losing interest in Christmas entirely. At ward round the Wednesday before Christmas patients were told in X Factor audition style if they’d have time away from the unit over the holidays. We all awaited our turn in the communal area, trying to interpret the mood of patients after they’d received their verdict while jumping at every noise thinking it was the ward round room door opening. I knew I wasn’t going home, I didn’t really have a home and my nearest relative was 300 miles away, which made the ward round experience that week somewhat easier. There was both joy and desperation on the unit that day, but when Christmas itself came along everyone had a glazy-eyed determination to try and make it ‘OK’ for ourselves. We patients made a pact to try not to cause incidents and try to prevent the bellowing wail of the panic alarm as much as we could- for the sake of christmas.
We all woke up to a basket of fairly edible croissants from the kitchen. At around 9am a procession of relatives were ushered in through the locked doors of the unit. They wore smiles and laughs like uniform as they met their offsprings, most of them experiencing the most unusual christmas they’d ever had.
My lovely Dad had traveled the 300 miles to be with me, staying as the only guest in a nearby Premier Inn on Christmas Eve. He brought with him presents which I tried to open like every Christmas previous, but with lorazepam distinctly blanketing any joy. I tried my best. There was then a knock at the door, and a member of staff appeared to apologetically search the items and remove any they felt could be dangerous. This ended up being about half of the gifts, including a tin of teabags which were condemned because they weren’t decaffeinated.
The only leave I had been granted was to go to church on a 1:1 with a nurse. This was one of the best parts of the day as I had always found her easy to be around. I knew she was a strident atheist which made me somewhat jubilant with the hilarity of her accompanying me to church. We ended up secretively giggling for the most part of the service.
I went back to the ward where I met my Dad again for Christmas dinner. I was on a meal plan so the meal was compulsory and had to be eaten. In solidarity my Dad declined dinner at his hotel and joined me in the meal, commenting to one of the nurses that: “It will take until new year to digest”. While our intestines struggled with the dinner we played board games; chess and monopoly. We attempted Cluedo but discovered that the unit set had had the knife confiscated for safety reasons.
By mid afternoon I was really struggling. I found it difficult to be out of bed for any period of time due to my medication, which I was receiving four times a day. I couldn’t fight it anymore, and fell asleep under my blanket on the floor. Dad left shortly after because it had clearly got a bit much for me and visiting hours were ending. Though our families understood we were ill we still felt a pressure to try to perform our way through the day. Talking to the other patients we all felt an intense guilt for, if nothing else, putting them through the dinner let alone a psychiatric ward christmas! One girl on the ward’s family brought her tiny pet chihuahua to come and see her. The family then made the executive decision to go out for lunch but left the dog with their daughter and the adoring ward. I seem to remember we watched frozen and cooed over the chihuahua for the rest of the afternoon.
When all the families and relatives had made tracks the mood dropped, as it did most evenings on the unit. The kitchen staff had the night off so we had a strange assortment of pre-made samosas and egg sandwiches for dinner. No one enjoyed it or found it edible, we all laughed as we dissected the strange lumps to try and work out what they consisted of. I don’t remember the rest of the night very well. The faces we had all put on to get through the day were beginning to crack and there were lots of alarms and medication.
It wasn’t a bad day on the ward as far as days there went, it was actually quite a good day. But Christmas in hospital could not compare to Christmas at home. Spare a thought this Christmas for those in CAMHS units and their families. If you own a business, call your local unit and offer a donation if you’d like to: chocolate and cake always go down a treat, or teddies, games or a ‘U’ rated DVD. Children and young people in psychiatric care are often forgotten about in comparison to children in general hospitals. Just knowing that someone donated something out of kindness could make a patient’s day. That was my Christmas last year. I hope this year will be better for myself and the others I spent last year with wherever they are. I can also hope that anyone spending Christmas in the same way is safe and has a tiny hint of happiness in the morning. They deserve it.
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.
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. CAMHS had always told me 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 in crisis.
But if I do I’m being dependent or ‘needy’.
If I try not to be dependent and don’t ring them, I’m not being proactive.
If people hurt me I should ‘take responsibility’.
If I do ‘take responsibility’ then I should be more cooperative and trust said person.
If I don’t reply to their emails I’m being non-compliant.
If I send them a practical query in office hours I’m breaching boundaries and being inappropriate.
Meetings are for professionals.
Professionals will make decisions for me in meetings that I don’t know about.
If I’m not acting on the decisions they made, which they still haven’t told me about, I am not being proactive in my care.
Basically the only message I am getting loud and clear is that I am seen as a dung beetle to the service.
I’m so confused, I don’t know what to do because every move I make is wrong.
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 Usain Bolt. I’m tripping and falling and generally being stupid because, the truth is, recovery is a load of balls!
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?
After the saga that was my ‘peer mentoring’ (dis)appointment I didn’t do too great. On the day I posted my blog I ended up being semi-dragged into the walk in at the Community Mental Health Team office. I expected the worst, “WHY ARE YOU WASTING OUR TIME?!”, and all the other phrases I have become accustomed to.
But it didn’t come. I took one of my support workers and just talked for a bit. I expressed my concerns about having a care co-ordinator who is under the illusion that I am just a disobediant child and how everything felt very hopeless. It was the CPN from the previous meeting and she listened carefully and said she would take it to the Multi Disciplinary Team again the following day.
My phone eventually rang mid afternoon on Friday. I was told that a change of Care Co-Ordinator had been granted and my CCO was now the CPN I had seen as a walk-in. I was over the moon, this CPN had understood me so much better. I cried with relief.
My first appointment with… (time to think of a pseudonym)… Esther… was this afternoon and it went really well. We played the facade of ‘who sits where’ that always comes with a patient and worker entering one of those small white room for the first time; our positions yet to be molded by therapeutic routine. I took the high backed seat nearest the door and hoped dearly that my choice wouldn’t be psycho-analysed. We talked about my moods and how they are erratic and the ‘base work’ that needs to be done whilst I am on the enormous waiting list for therapy. Things like emotional understanding, trigger recognition, crisis prevention and so on. Generally the aim is that I will feel better for a bit before therapy churns everything up again but I should be able to deal with it. We didn’t pick up anything heavy other than the very background details of my trauma. Esther noted down a few of my questions so that she can ask the psychology team. She also reiterated that she will be having supervision from the psychologists following our sessions to make sure she is doing the right things to help me. Again with the complex case stuff: cringe.
It might be my ‘exaggerated moods’ but I feel super happy. Like everything is going to turn out fine. The lions den wasn’t as scary as I feared. The lion has been replaced by Esther the domesticated moggy!
For the last eighteen months I have been homeless. I have never slept on the street, I don’t do drugs (except my prescription ones of course) and I don’t drink. These are stereotypes people jump to when they think of a homeless person. But did you know that‘homeless’ means literally without a home? Not house– home. There is a big difference between the two: a home is a space that you have some kind of control over and it is somewhere permanently there for you for as long as you need it. There are thousands of homeless people in the UK that do not sleep on the streets. They sleep on sofas, hostels, B&Bs and maybe even hospitals.
For the last eighteen months now that has been me. Sleeping on friend’s sofas and hostels. Anywhere that would have me. I didn’t have any other option and it was one of the most unstable times of my life. It’s no great surprise that it lead to me being hospitalised.
For the past year of that time I have been in CAMHS psychiatric units. I came when I was seventeen and I am now eighteen and three months. I shouldn’t be here. I was formally discharged from the unit in march but I had nowhere to go. Duty of care means that the hospital cannot chuck me, blind and severely mentally ill, onto the street with only my guide dog for support. It would look really bad on their part. But with family members ruled out for many reasons by professionals what could be done? Children’s social services had refused point blank to help me. Insisting that despite professionals seeing safeguarding issues I could still return to family. They felt that I was making myself homeless. If only.
On my eighteenth birthday adult social services got involved. They tried to help me and at first it looked promising. But the longer I was in hospital and in the horrible predicament of having nowhere to live my mental health deteriorated. It was an urgent case and the social worker I had been assigned only managed to see me twice and made little or no progress in finding me accommodation. Eventually I was referred to a team in social services that deal with complex cases, often people with multiple disabilities like myself. I was very lucky to get a fantastic social worker this time and within a week he had found me some very promising looking accommodation options.
Yesterday I was given the news that I had been given funding to go to one of these places. After being in hospital for nearly a year I now have a way out. Things now look a lot more positive. I have been given a chance at having a safe and stable place to live. At long last. I haven’t written about my situation with homelessness before because I have been gagged by services. There were just too many ‘ifs’ ‘buts’ and ‘maybes’ for me to write anything coherent. All anyone could see was red tape and no one could seem to be able to cut me free of it. Four psychiatrists, five social workers and many mental health professionals later we’ve got some sort of movement.
I cannot be the only person in the UK that this has happened to. No one should have nowhere to go, especially not children or vulnerable adults. One of the main problems I faced was that because I was in hospital, or staying with friends, or anywhere but on the street I was deemed as ‘safe’ by social care and not a priority for support. I was in hospital so could not claim benefits due to not having a permanent address and to live outside of tier four care I need everyday support. The problems seemed to just multiply like maggots.
There is something going seriously wrong with the system. However, I’m getting out of hospital on Monday! It is going to be terrifying but rewarding and I’m ready for the next chapter.
It’s the 2nd of February 2015 and finally, having been transferring CAMHS unit ‘soon’ since November, I am being moved the 250 miles from Southampton to Yorkshire. Having been at Heron unit the longest of all the patients and having nowhere to go home to, the psychiatrist felt that this move was the best decision in order for it to be the new unit’s job to work out where I should move on to. This had been his aim for several months when he finally arranged a ‘ring-fenced’ bed for me, a term which I found humorous in the context of a psychiatric ward. I imagined a bed with high barbed wire covering it with my dinner being pushed through each evening. I had been awake all night which was custom at that time, checking and rechecking my bags. Despite having come to hospital with just a backpack and a bag of dog food, in those six months I had acquired a lot of belongings- most of them hand crafted items from occupational therapy sessions. At dawn the knock at the door came, and for reasons I still don’t understand I discovered that the ‘private ambulance’ I was being transported in was a mobile padded cell complete with floor to ceiling soundproofing and a metal cage. Heron unit in general was a secure setting- the doors were locked and a lot of day-to-day items were not allowed. Although this was the case I am still not sure the secure transport was necessary as, being blind, my risk of absconding on the motorway was very low. I hasten to add that I was not travelling in the cage; though if I had been there would at least have been the advantage of facing the way that we were travelling.
All parties- myself, guide dog and occupational therapist were unimpressed at the early start. The OT had offered to come on the 500 mile round trip to support me, something I was exceedingly grateful for in my anxious state. As we tried to play card games at sunrise, rattling backwards down the motorway, ambulance man Dave who had claimed the only forward facing seat kept falling asleep mid sentence. I didn’t mind, it was quite funny considering he was there to ensure I wouldn’t do a Houdini style escape. When he wasn’t asleep he was telling us facts about the motorways we were on or beating us at Uno.
“Is this how they transfer murderers?” I asked, about an hour in to the journey while admiring the decor. “Sometimes… But we’d have them in the cage with a lot more escorts.” Dave replied.
At the service station a couple of hours later (now in daylight) I realised that the vehicle looked to all the world like a white, rather grubby, transit van. This coupled with the soundproofed interior, cage and blacked out windows made me wonder if I was in fact involved in the world’s most ineffectual kidnap.
If given the choice on any long journey, one should always take an Occupational Therapist. The things they hold on their person on a daily basis is undeniably impressive. The OT Supremo I travelled with had in her handbag alone; a colouring book, a large assortment of pens, a decorative fabric heart to be customised, and a multi-layer Tupperware box of nuts and seeds to share. All of which were put to good use on the journey.
Seven hours on, the van pulled up and we all jumped out lead by Brian the driver. With his clipboard in hand as if he was a DPD delivery driver dropping a parcel, he went into a rather decrepit looking building, only to return perplexed five minutes later. Out of breath from the short walk he recounted: “I went in and said we’re here and they said that it was a unit for the deaf… So I think: ‘she’s blind’ and then they tell me that the outpatient bit is next door. So… I go to outpatient, but I says ‘we don’t need outpatient, we need inpatient’. So they’ve given me this address.”
“He’s good is Brian. Used to be a traffic cop. Driving’s in his blood.” Dave tells us when we were all belted back into the van. “Isn’t that right Bri?!” He shouts through the tiny Perspex hatch which Brian had been silently driving behind all day. Brian then proceeded to sail past my new unit three times, whilst grumbling about not having the postcode and just the street address. It was on the third time that we sailed by the unit that OT supremo tentatively spoke up, and Brian and Dave pulled up and moved my luggage inside.
And then I was there. Airlocked in, in the appropriate region and with genuine northern people. However I was also saying goodbye to someone who helped me infinitely during my time at *Heron. Saying goodbye to OT Supremo was hard, and with her I said goodbye to my make-shift home for the last six months. And the future, in a brand new unit, seemed a whole lot scarier.
It is Saturday the 31st of January 2015 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 overtake some adult patients in their usual cloud of smoke. “Back up North, 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,
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 other girls, all of whom I have seen arrive on the ward, my move is a big conversation point. Not about my leaving you understand- more my guide dog Noodle’s. To them it seems inconceivable that there won’t be a dog on the unit anymore. Plus the concept of ‘The North’ appears to be of similar sustenance in their heads to that of Neverland. They have never been, they can’t imagine it and they get alarmed when they get confronted with Northern accents on Coronation Street.
“Is it NHS?” Was a top question. The word NHS was said in a Miranda style whisper. We were, after all, NHS patients in a private hospital which we unanimously agreed was appalling, so the idea of anyone going for treatment on the National Health was concerning. On this assumption we were all pretty sure children who got put in psychiatric units on the ‘Nuh-Huh-Suh’ would appear, looking sad and impoverished, on comic relief in a ward full of bed bugs. I’m no snob- but by the time move day came after all this discussion 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. I was coming home- well kind of.
If you have been following my musings for quite some time you may remember that I had the pleasure of attending the Natspec Student Conference way back in December.
Since then Natspec’s campaign to give choice to young disabled people in education has grown into a rather stunning campaign called ‘Right Not a Fight’.
The title (of course) is referring to the battle which many young people have to go through before they can gain funding to get into specialist colleges. I loved the December conference and I was honoured to be a part of the group which coined the phrase ‘Right not a Fight’. On Tuesday I headed out with a group of students from my college to London to take part in a protest with Natspec outside parliament.
The day started bright and early and myself and friend T found ourselves to be the only two students to travel the four hour journey in the car rather than the minibus with the others. The minibus goers said farewell and began their journey, while staff member K was still stuck contemplating where on earth we were going to put the umpteen lunch bags we had been left to transport from the college kitchen. On one of the hottest days of the year and surrounded by egg sandwiches with a distinct absence of cool bags, we were off.
On arriving in London and being presented with our ‘Right not a Fight’ t-shirts we went in search of a cafe and a toilet. To get accessible facilities we ended up going through airport-like security to use the ones in the House of Commons. We felt very privileged, and in the Foyer I met a group of small children who asked me if Noodle the Guide Dog was an MP. “Yes she is” – I replied with a smile. Apologies to the parents who likely later had to explain to their child that dogs, bow-tie wearing or not, cannot be members of parliament.
We were meeting on Old Palace Yard, Westminster and though we were strictly prohibited from using ‘Noise Producing Objects’ myself and T decided to take the risk and bring out our ukulele and Guitar. If I was to be asked previously what I thought the first time I performed in public would be like, I would have never have guessed it would be singing ‘Roar’ along to my ukulele in front of the House of Commons. Several MPs popped over the road to see us, and now that the noise rule had been well and truly demolished the group began to chant too. Other colleges who are members of Natspec were there also and it was lovely to catch up with people from the December conference and meet new friends too. My personal highlight of the day had to be meeting a charming young man called L who I communicated with through Makaton. I have been learning makaton since september, but this was the first time I had used it in real life. He was lovely and even told me about his pet cat.
Many photos, videos, chants and renditions of ‘Roar’ later we were back on the road. It did feel like we had been travelling for an awfully long time for just an hour and a half protest, but it was completely worth it. On the way back myself and T reflected on what our college has done for us, and how close the campaign is to our hearts. L and K joked that they should have had a dictaphone running to take quotes from us. Overall it was a fantastic day and I of course will be supporting Natpsec 100% as this campaign flourishes.
As it was Mental Health Awareness Week this month I felt that this topic should be represented in SSS. This Month’s cause is ‘Living With Me and My OCD’. It is a project which was put together by Claire Watkinson. It started in 2012 with the aim of raising awareness of the disorder through a film which would eventually be sent around the world. Claire herself is a sufferer of OCD and has interviewed 29 people, travelled 7,000 miles and has done countless phone and skype chats with other sufferers.
Having spoken to Claire I can feel the immense passion she has for this cause. She has a burning desire to spread awareness of this highly misunderstood condition and to help people diagnosed with it.
‘Living With Me and My OCD’ needs funding to have the final film assembled. This money will also help with distribution and production.
On tuesday I had the pleasure of being part of the group representing my college at the NATSPEC student conference. NATSPEC is the Association of National Specialist Colleges and it works to connect and support all the specialist colleges in the country. The conference was set up to give the students of the colleges a chance to give their opinions on the specialist education system and to meet each other.
Unfortunately getting into a specialist college isn’t as easy as enrolling in a mainstream school. Funding needs to be granted from the local authority for a student to be educated elsewhere, and a case needs to be made for why the funding is necessary. The funding application process is long and stressful, and a lot of hard work needs to go into it. This is something that every student at the conference had to face to get to their specialist college, and why NATSPEC are working to change the system for the better to give more young people the opportunity to benefit from specialist education. The new Children and Families Act is due to change the specialist education system again, and it is important that the views of the people it will effect are shown now.
The conference was held at the very impressive National Star College near Cheltenham. The day started with introductions and we were put into groups with a few representatives of each college per table. On our table we were sharing with some lovely staff and students from Derwen College who we quickly got chatting with. The activities involved writing down our answers to some set questions on large pieces of paper. They covered a range of topics- from what we would recommend about specialist colleges, to what NATSPEC should do to improve the current system. With each question came very valuable discussions and ideas began to fly. Everyone on the tables, both staff and students, were passionate about the fact that specialist education is vital and needs to be protected and made available for more young people. As funding gets more and more difficult to obtain for prospective students the more these colleges struggle to stay open. I had never really thought about the effects of the funding system on the colleges themselves, and it was a real eye opener to hear about it. All over the room I could hear words like ‘Life changing’ and ‘Independence’ being used and so many more positive words being scribbled in big letters on each group’s sugar paper. It breaks my heart that every year so many young people get denied these opportunities because of the harsh funding process.
When asked what I would say to someone thinking about going to a specialist college I replied: “You can stop worrying about your disability and start learning and living.” and I mean it with all my heart.
It was an amazing day and NATSPEC is now in the process of planning it’s new campaign using the ideas students gave. You can read more about NATSPEC here, and see my thoughts on my personal move to specialist education here. I’ve seen the way specialist education can change lives, and I think it is something that we should definitely be fighting for.