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My Experiences of the NHS Mental Health Service

 

I would like to share my experiences of the NHS mental health services.  I have found it a patchy service at best, with very little flexibility.  I am not saying that you should not seek help with mental health issues, there are some positives in the mental health system, but it is far from an ideal service and needs a lot of changes to make it work better for more people.

My first experience of therapy for mental health came aged eleven or twelve when I was referred by my GP after my mum asked.  I think she had to ask more than once.  I was diagnosed with OCD by the psychologist.  I had talking therapy once a week, often with my mum.  I got a new psychologist later who put me on medication for my OCD.  I am still on that medication.  I think it used to help, but no longer think it does anything for my OCD.  No doctor willing to properly review it.  One doctor did agree it probably did nothing for me now as I would have become immune to it and put me on a much lower dose as you can’t simply come off it. I know it is one of the hardest medications to come off and the side effects of not taking it for three days once when I ran out at university were awful.  I do not know if the medication has any side-affects as I have been on it so long I am no longer sure what is me and what is the medication.  It could be one of the reasons I am tired so much and would love to be able to try life without it, but right now that does not seem possible.

I started group therapy once a week for a couple of terms.  I am not sure if it was helpful or not, but I liked going as it got me out of school for the morning.  The trouble was I did not fit in with the others very well and some of them could have been a bad influence.  Some of the girls tried to talk me into smoking with them during the break, not that I ever did.

Autism, more specifically Asperger’s syndrome were raised as something I may have.  I can’t remember if it was my mum who brought it up or if my psychologist mentioned it first, but I remember it being discussed.  However I never was sent for testing, which I do not understand as I clearly had major issues and think it would have helped a lot to have a formal diagnosis.

At the age of thirteen I left my first secondary school as I was being bullied very badly and the school was not really addressing it properly, nor were they helping me with my mental and physical issues which were clearly getting worse.  I ended up spending a term in a new education program for children struggling with school run by the childrens mental health services.  It was just a classroom in the mental health services building and not really a school, but it was better than nothing.  Then I ended up in a special needs school, supposedly for those with physical disabilities, but I think my hip was just an excuse and really it was the fact that no other school would have me and the education authority did not know where else to put me.  I think my report from my previous school may have put other schools off.  I admit I had become very difficult to teach by this point, having become very angry a lot of the time and not really being able to handle it.

I had anger management therapy for a few sessions with a mental health nurse.  This was based around mindfulness.  It helped me a little bit, but mindfulness only works if you can feel the anger coming before it is too late, which often I cannot.  The trouble is I tend to go from fine to angry in about a nano second, which gives me no time to put the mindfulness in place.

When I turned sixteen I left the children’s mental health service and that seemed to be that.  I was not transferred to adult services.  Some years later I asked my GP for support with my mental health and I was offered counselling through my surgery.  It was not very helpful as I did not get many sessions and I do not think the guy really understood my problems.  A few years later at university I had some counselling that was more helpful to me.  I think it helped that she was used to working with students so it was more tailored to my situation at the time.  She taught me about mind maps, which helped with my coursework to make it seem less daunting and stressful.

Since then I have gone to my GP for support with my mental health and been told about the anxiety and depression service.  I have tried this service twice, once for depression and once for my OCD.  As a self referral service I found it hard to get an appointment.  Last time I had to ring them three times before they answered the phone and they totally ignored my emails.  For depression this is not helpful, a depressed person is not very likely to keep trying once they fail to get through.  Once you do get an appointment you are told you get twelve sessions mostly over the phone.  I found phone therapy very unhelpful as it meant I could sit at home and wallow in my depression or lie about how much of the homework I had actually done.  I found the phone calls quite uncomfortable and would just say what I thought he wanted to hear to get it over with as quickly as possible.   When it came to therapy for my OCD I found it pretty much useless.  The only kind of therapy they seem to offer is CBT (Cognitive Behavioral Therapy).  At first the program seemed to be helping a bit, but I soon realised it only got rid of one OCD trait to replace it with another.  The therapy never looked at the causes of my OCD behaviour, just the individual symptoms.  Despite specifically asking to have only face to face appointments, I was soon given only phone calls, which were not very affective.  The next stage was to sign me up with an online program that only therapists could add you to.  Some of the exercises on the program required that you logged in daily to the site.  I did tell my therapist that I was in the process of moving and had no internet in my new flat, but despite this she kept on at me to use the program.  Some of the exercises were simply impossible to do in the local library where I often access the internet.  In the end I gave up as even the exercises I could do seemed to not be helping.  I have since been told that CBT will not help me anyway as I am autistic and it hardly ever works for people on the spectrum, so that was a waste of time.  No other service is offered for OCD on the NHS in my area according to my GP.

Last year I was finally diagnosed as High Functioning Autistic or Asperger’s after my mental health assessment flagged it up as something to get tested for.  I was about thirteen when it first came up as a possible diagnosis and it took till I was thirty-one to be tested!

I find it hard to get a GP or anyone else in the health service to take my mental health problems seriously.  I have never self-harmed or been suicidal which maybe one reason I get so little support, despite finding my anxiety and OCD crippling some days.  I have never had a psychologist as an adult.  I did get some support from one GP after I cried in an appointment and asked to sign on as too sick to work.  She got me a mental health assessment, the first and only one I have had as an adult.  This did help as it led to some positive changes in my life.  However I think it helped that I had changed surgeries not long before this as my previous surgery had always seemed to dismiss my mental health problems.

I think mental health services need to be more flexible to meet a patients needs.  People end up costing the NHS more if they are left till they are so ill they need hospitalizing or longer term care.  CBT and mindfulness therapy is proven to work well for a lot of people, but it is not going to suite everyone, yet they seem to be the only things the NHS offer.  Even if it does help, you get so few sessions that as soon as you make a tiny bit of progress the therapy runs out and you go back to square one.  I think the NHS would save money if they invested in better mental health services, as some physical symptoms can be brought on by mental health issues being left untreated.

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Officially a freak and relived

I have always known there was something a bit different about me and I have long suspected I have autism, but no one actually sent me for testing till I was thirty one. I had to actually ask for it and then wait over a year for the appointment at the clinic. It took three appointments, two of testing and one for the results. I had to take a close family member with me, in my case my mum and she also had to answer a load of questions about me and my childhood. (Not so easy to remember everything over twenty years later!) I am now officially diagnosed as high functioning autistic or what used to be known as Asperger’s, but they changed it to reflect the fact that high functioning covers more types of people with it. They asked me how I felt about the diagnosis, so I said relieved, it helps explain a lot about me. It also helps me explain myself to others at times and I am hoping in future will help with things like benefit claims or getting job seekers support.

Not long after my diagnosis I found a fantastic book in the library called Freaks, Geeks and Asperger’s Syndrome by Luke Jackson. He wrote it when he was thirteen and it is a brilliant insight into what it is like to have high functioning autism. I can relate to a lot of what he says and he helps me to explain things better to others. I will use some quotes from the book as jumping off points for me to discuss my autism.

AS (Asperger’s Syndrome) is usually described as a mild form of autism, but believe me, though the good outweighs the bad, there are some bits that are most certainly not mild.’ You try telling the parent of a screaming child far too old to be having a temper tantrum in the middle of the street that it is mild! I remember wishing it was less mild sometimes then at least they may have taken my problems more seriously in school, but of course I am glad it is not any worse.

When we didn’t know and didn’t have a diagnosis (or were not told about it) it was a million times worse than you can imagine.’ ‘You may think that if the child or person you are seeing has lots of AS traits, but you can’t fit them neatly into your checklist of criteria, you are doing them a favour by saying that they haven’t got it. In fact this doesn’t make them not have AS, it just muddles them up more and makes them and all around them think they are even more ‘freakish’.’ Quite a few people have asked me if I really needed a diagnosis, would it not better just to be happy with myself as I am. I get where they are coming from, but knowing is better than not knowing, as it means you can understand yourself a lot better and so can others. I remember being bullied as the class freak and weirdo. I was the odd child that did not quite fit in and I never had any way to explain myself. If I had been diagnosed it may have helped school to help me and it might have helped me to feel like at least I was not a total looser and freak.

To be on the autistic spectrum is not the same as being on death row- it is not a death sentence, it is not terminal, it is merely a name for a lifelong set of behaviours’. So if you suspect you child has autism push for them to get tested for it and do not ignore it. It is not the worst thing that they could be diagnosed with and it may even help them to know they have it. It could help them find support and maybe even get taught in school in a way that is more useful to them.

I can imagine how adults have gone all their lives confused and misunderstood would seem as if they had a severe mental illness. I am sure it would cause depression too.’ I have suffered from depression in the past and have anxiety issues which I am sure are not helped by my autism. I think that if I had been diagnosed and helped at a younger age it might have helped me to not develop such bad mental health issues. Not knowing what was wrong with me as a child did cause me to feel very isolated and frightened at times, which I know made me more of an anxious person and depressed.

I just have to talk about it and the irritation at being stopped can easily develop into raging fury.’ I have always been known as a chatterbox, but for me not talking as a child just seemed wrong, if I had a thought I had to express it out loud. To not be able to express my thoughts was very upsetting and I felt like if I did not express them they would get louder and louder in my head till they were too much to handle. I used to get very angry if I was interrupted or prevented from talking to the point I would scream and shout just to be heard. Although I still talk a lot, I no longer feel I have to express every single thought that comes into my head and have learnt to be quieter in some situations.

Seem to speak rather differently and have difficulties understanding a lot of other forms of communication such as facial expressions and body language. These can be learned to a certain extent I think.’ I now think I am quite good at recognising facial cues and reading body language, but it took years of practise to get this far. I sometimes struggled to understand people when they were not being literal. People seemed to make jokes about things that I did not find funny at all. I understood that it was sarcasm, but I often found I did not like the joke. I think my performing arts and drama studies have helped me a lot in understanding body language, expression and emotion in others.

It seems as if the taste buds are over or under developed.’ It is to do with the presentation, the texture and the smell of food as well as them needing sameness.’ I had a huge thing about the texture of my food as a child, I hated any lumps or bits at all, I even hated bread with seeds in. I wanted all my food smooth like a paste when I was very young. Bits felt very wrong in my mouth and hard to swallow. Now however I love texture in my food and adore seedy bread.

Most AS kids genuinely have a really hard time with games.’ I hated PE in school, sometimes for me it was like a form of torture. I had one teacher who accused me of being lazy, but it was not that at all. It was the fact I would have to change, and then change back again, which with my OCD was one of the hardest tasks they could set me to do by myself as a child. The whole changing into a PE kit thing seemed pointless to me anyway as I could barely catch the ball, let alone do much with it, so I never broke into a sweat. I was unable to keep up with team sports and my coordination for catching and throwing is woeful. It was not helped by the fact that I had no friends whatsoever in my first secondary school and whoever ended up with me on their team resented me for it.

It is very unfair of the media to portray us all as people who talk continually about train timetables or constantly talk about dates or facts, or computers. We are called freaks and nerds enough anyway.’ ‘Despite the film Rain Man, we don’t all have these amazing mathematical skills- I wish!’ ‘Savant autistic is very rare- I seem to have got the nerdiness and freakishness, but none of the genius. These programs seem to make Joe Public think we should all have some seemingly supernatural ability and that is not at all helpful.’ I have in fact got terrible maths skills; one teacher even suggested I might have a maths learning disability. I am now able to use enough maths to be able to function in everyday life, but as for fractions and algebra I never understood them. I find train timetables very useful for catching trains, but dull as ditch water to discuss at any length. I can be very nerdy at times, but I really do lack the genius part, I actually had to work very hard to get to the degree I now have and was never a child prodigy at anything.

I just don’t want to run with the pack. I don’t see the point in pretending to like things when I don’t.’ I never seemed to like the same things at school as everyone else and I most definitely did not fit in with the social life my friends had at college. I could never understand why they wanted to go out drinking heavily and end up in some nightclub listening to awful music. I never saw the point in pretending to like things just so people would be my friend as they would not have been true friends anyway. I was bullied for being different in school and was actually quite depressed for some of my teenage years, but I never saw why I should have to fit in just to please them.  Both at university and now I have made real friends who actually have some of the same interests as me and we enjoy spending time together.

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For the want of a diagnosis

I have been trying to define my mental illness for years.  I decided that I have a combination of mental health and learning disorders that overlap and interfere with each other.  However apart from OCD I do not actually have anything else officially diagnosed in my medical notes as far as I am aware.  I have been told by medical professionals and therapists I clearly have other issues going on, but they have always failed to define exactly what it is I have.  I do not fit the boxes society likes to categorise people into, which is a problem when it comes to certain things.  I seem to have high functioning or borderline conditions that taken separately do not seem that bad, but together make me frankly a mess at times.

One of the hardest things to do when you do not have an officially diagnosed illness or overlapping ones is to fill out a government form.  Recently applying for Employment Support Allowance benefit was very tricky.  I failed a medical assessment as I did not have any medical evidence apart from OCD and I come across as coping quite well when I talk about things.  The initial form and medical seemed to take each issue separately and failed to take into account how my conditions interact with each other.  Luckily at my appeal tribunal they did seem to look at my issues as a combination of things and how they affect me as a whole person.  Also they allowed my key worker at the time to speak up for me and say how it really is, which the initial form had far less room to do.

School was made harder by not having my mental health and learning disorders diagnosed.  If things had been diagnosed they could have gone on my statement of need, which hopefully would have been read by my teachers and then they could have helped me more in the right ways or at least have given me more understanding.  Instead I had a deputy headmaster who told me I was attention seeking and that my crying was crocodile tears.  I think the fact that I am verbally articulate and read and write well contributed to schools not picking up on my issues and suggesting I should be tested for anything.

Getting a job has proved very difficult for me.  Two seasonal part time jobs are the total extent of my paid work history, despite getting many interviews and most of them seeming to go well.  I can not explain my mental health and learning disabilities to potential employers, as I am not exactly sure what to tell them.  It can be hard to explain high functioning; overlapping conditions, even harder when you can’t even put a name to what it is you have exactly.  So my guess is that in interviews I may sometimes come across as a bit odd or different, something employers can’t quite put their finger on seems to be putting them off me.

I have had a few attempts at therapy over the years, but again without knowing exactly what I have it can be hard to get the right help.  I have mainly had Cognitive Behavioural Therapy for my OCD.  Well this has helped a little, it never seems to get past the initial stages before my therapy sessions run out or I hit some other obstacle that makes it difficult.  For a start therapy only seems to deal with one issue at a time, which makes it hard for me.  I try to carry on my therapy at home only to find it triggers other issues I have such as my emotional behavioural problems, so I end up taking out my stress on those around me in anger or crying and getting depressed.  I would like to find some therapy that helps me deal with my issues as a whole taking into account how they interact with each other.  However it seems very hard to get any kind of therapy without named conditions and the types of therapy available on the NHS seem very limited.

Since I started writing this blog progress seems to be happening on trying to diagnose me.  I have an appointment at the autism clinic fairly soon.  The appointment took well over a year to come since being put on the waiting list, which is so long I had almost forgotten I was on the list.  I have wanted to know for certain if I am autistic for many years.  I am pretty sure I have high functioning autism, but an official diagnosis on my medical notes would really help.  It took me changing doctors surgeries and having a mini break down for my mental health issues to be taken seriously for the first time in a long while.  I actually had a mental health assessment with a mental health nurse for the first time as an adult, my last one being when I was about eleven.  She seemed to really understand my issues and made sure that something was done to help me.  I asked if I could have an assessment for autism and she actually said that would be a good idea.  No one in twenty-nine years before that had referred me to the autism clinic despite seeing therapists on and off since I was a teenager and clearly having problems.

I hope to get a definitive diagnosis soon so I can start to make sense of who I am, but also just to make my life that little bit easier when it comes to filling in forms and sorting things out.

 

High Functioning Autism

I have autism, what is often known as high functioning autism.  This means that I am on the autistic spectrum, but have average intelligence.  It also means I can basically function on my own as everybody else can, but I can struggle sometimes with certain situations.  Sometimes people with high functioning autism can find it hard to get a diagnoses as they don’t exhibit all the typical signs of autism and often seem to be functioning well.  The idea that I was on the autistic spectrum did not come up till I was in my early teens.  A child psychologist first diagnosed me with OCD, which is something people with autism often have.  However I am not even sure I am officially diagnosed as autistic, but the psychologist definitely brought it up as something I probably have, and having looked into it, I am pretty sure I do.

I am glad I know that I know I have it as it helps explain why I often feel like I do and helps others to understand me.  The problem for me with autism though is that I am fully aware I have it, but can not seem to do anything about it.  I have wished in the past that I was more autistic in some ways to the point where I was ignorant of the fact I had it, then it might bother me less, but this thought never lasts long.  It can be frustrating to look back at some situations and realise the reason it did not go so well was mostly your own fault, but at the time you could not see what you were doing or saying was the wrong thing.

The main way in which my autism affects me is in social situations.  I find it hard to make and maintain friendships.  I always felt like I was a bit of an outsider in school and preferred my own company sometimes.  I found it hard as a child to read people’s emotions and body language sometimes misjudging the situation and saying the wrong thing.  Over the years I think I have got better at reading emotions and understanding other people, but I can still struggle with more complex situations.  I can come across as selfish or self-centred with some of the things I say, but I do try to think of others and not just of myself.  I have noticed that I can be quite good at responding to social interaction, but I struggle at initiating it.  I often fail to make good eye contact at first and come across as slightly shy, when in fact I am not shy at all.  The website WebMD describes it well:

‘Unlike People with other forms of autism,  people with high functioning autism want to be involved with others.  They simply don’t know how to go about it.  They may struggle to understand others’ emotions.  They may not read facial expressions or body language well.  As a result, they may be teased and often feel like social outcasts.  The unwanted social isolation can lead to anxiety and depression. ‘  WebMD

I was bullied in school and think my lack of social skills was a huge factor in this.  I have had some serious anxiety and depression on and off since I was a teenager, some of which was brought on by being socially isolated and feeling very lonely.  I have managed to make a few friends, but still do not have very many and do not consider myself to have much of a social life.  I sometimes find it easier to get on with older or younger people than people of my own generation.  I have always felt a connection to older people, they just seem to understand me and have more in common with me.  I find it easier to interact with my two-year old nephew than a lot of people my own age.  Very young children are clear with their emotions and with what they want to do, they do not hide how they really feel and I can understand what they are asking of me instantly.

Another way in which my autism manifests itself is in my emotions.  I am a very emotional person with a high emotional response to a lot of things.  In school if I was frustrated, which was quite often, I would get very angry with the teachers and other staff.  I would have full on temper tantrums as a teenager in front of my whole class.  I think I did this in primary school when very little, but I seemed to stop after the infants, but it started up again in my first secondary school.  I think it started towards the end of year seven when the bullying got too much for me to handle any more, and I started yelling in class at the bullies.  After that I started to yell at the teachers when they failed to do anything about the obvious bullying going on in front of them.  At my next school  I used anger to express my frustration when I found the work too easy or too hard.  I could switch from a perfectly OK mood to a full on temper tantrum in a matter of seconds.  I would then get sent out of the room or choose to walk out and cry for ages in the corridor.  I never planned on having a tantrum before I had one and I am sorry for the disruption they would cause for the rest of the class.  I stopped having so many classroom tantrums once I went to college, although I had the odd few at first.  I think I felt less frustrated at college as you could pick what you studied and the work was more at my level.  I still used to have tantrums now and then at home which I feel awful about now as it was so unfair on my mum.  I do not seem to have full on tantrums now, but I do still get too angry at my parents sometimes.  I shout too much at them instead of talking out my problems with them at times.

I also get overly anxious about things and then this can lead to feeling very low, even depressed at times.  I feel helpless, like nothing I do will be worth it and I find this spoils my enjoyment of doing the things I would normally enjoy, so I simply stop doing things.  I have spent whole days in bed not bothering to get up as it is simply not worth the effort.  If this carries on too long I start to get negative thoughts that play on my mind over and over, making me feel even worse.  Although not totally linked to my autism, I am sure it is in some way, making me less able to deal with my emotions in a more healthy way.

Other ways in which I find my autism seems to effect me include my need to be perfectionist about my hair and clothing.  I resist change in my immediate environment and  hate when things are not as I left them.  Mostly now I can cope if someone makes minor changes in the house, but if someone does something in my bedroom without me knowing I can get very upset still.  I find fine motor skills take me longer to learn than most people, I know I was older than most of my peers by the time I could tie my own shoe laces for example.  I have always had a low pain tolerance and this is supposed to be a common trait in autistic people.  Another thing autistic people are supposed to enjoy doing is keeping large collections of things, which I most certainly do with my charity badge collection and my postcard collection, although unless this gets too out of hand, I can not see this as a problem.

There are other symptoms of having high functioning autism I do not seem to have, but maybe if you asked my family they would consider me to have other autistic traits that I have not recognized myself.  Sometimes I find it hard to know when my personality stops and my autism starts.  However autism does not define me and is not who I am.  I have heard autistic people referred to as ‘them’ or ‘they’, such as a woman I met in a chat room who works with autistic school children who said ‘they are all such lovely people’.  I had to point out I was autistic and far from lovely at all times and not all my unlovely parts of my personality could be put down to autism.  That would be using my autism as an excuse to get away with bad behaviour and selfish acts at times when it had nothing to do with it and that is something I would never do.  I have a personality outside of my autism as does every single person with autism no matter where on the spectrum they come.