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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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Alcohol is not for everyone

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I have given up drinking alcohol. Since mid December last year I decided that alcohol and me do not suite each other. Some of my friends have questioned this abstinence and do not really understand why I have done this. So I have written down my reasons for no longer drinking and hope it helps others to understand that alcohol is not for everyone.

Before I start I would just like to say this is not an anti-alcohol rant, I have nothing against people having a drink and do not mind if people have a drink in front of me.

  • Health

Alcohol is a poison, ‘Your body can only process one unit of alcohol an hour. Drink a lot in a short space of time and the amount of alcohol in the blood can stop the body from working properly’, (www.drinkaware.co.uk). Not only can alcohol effect your liver, it can affect your stomach and digestive system, your kidneys and in fact most of your body systems.

Alcohol also has a big effect on mental health. Alcohol is a depressant, at first it may help to relax you and make you less anxious, but after a while it can make things worse. I certainly felt a low mode sometimes if I had a heavy night of drinking. Drinking can become a vicious circle, drinking to reduce your depression and anxiety, but actually making it worse long-term.

I already have both physical and mental health problems, so I decided it was not worth the risks to make them worse. I can get quite depressed and anxious without the help of alcohol and last time I was very drunk I felt even more low than normal the next day.

  • To stay in control of my emotions better

As an autistic person I sometimes struggle to control my emotions. When I am not feeling at my best I can get very upset or angry easily. When I was drinking I noticed that it often just amplified the mood I was already in rather than relaxed me. So if I was feeling depressed or anxious it just made that feeling worse. ‘Regular drinking lowers the levels of serotonin in your brain – a chemical that helps to regulate your mood’ (www.drinkawear.co.uk) so it was bound to make me feel worse since I am naturally a rather anxious person. Also I have noticed that some people become more angry when they are drinking and more sensitive to things they would normally dismiss as not important, which is not a good way to keep healthy relationships with friends and family.

  • Weight

According to an article in Elle magazine ‘When Alcohol is in your system, it’s harder for your body to burn fat that’s already there’ (www.elle.com). It slows down the rate at which fat is broken-down. Not only that, but drink itself full of calories and sugar. For example cider (what I used to drink most) has 216 calories on average in just one pint. A 175ml glass of wine has 159 calories. A pint of beer has 182 calories on average. In other words alcohol is not a diet drink and can help you gain weight. ‘People eat about 30 percent more food when they consume alcohol’ (www.elle.com) which is something I can relate to. After a night out drinking I always feel hungry, and often end up getting some kind of greasy burger to take home. The large queues at the late opening fast food joints show that this is true for many people. I already enjoy my food a lot and do not need any help to eat more.

  • To Save Money

If you have any taste buds and drink not just to get out of your mind, but actually enjoy the drink itself, you will not be able to drink the cheapest alcohol on the market, such as that shockingly cheap cider you see in stupidly large bottles in most convenience stores. I tried that stuff once and I decided that I might as well just be drinking paint stripper it was so disgusting.

  • Have a good time without anyway

I still go out and have fun with friends without alcohol. I go to a pub quiz most weeks and enjoy it despite sticking to coffee and fruit juice. In fact I think I might be better at the quiz with a clearer mind and no alcohol to make me unfocused. On a night out with friends I sometimes feel a natural buzz from the atmosphere around me and don’t need drink to feel like I am having a good time.

  • Hangovers suck

To state the obvious hangovers suck. When I was younger I used to hardly get hungover, just a dry mouth and a bit of a headache, but the older I got the worse the hangovers got. Being autistic I cope very badly with feeling unwell, I am overly sensitive to even a small amount of pain and I panic when I feel sick. Hungover me was not pleasant for other people to be around. I decided to try and avoid having to feel that way as much as possible. To those who start coming up with hangover cures the NHS website tells us ‘there are no cures for a hangover’ (www.nhs.uk/livewell).

  • To stay safe

After a night out I have to get home again, often alone, I would like to do this with all my faculties intact so I can look after myself better. I would rather not have to go home alone late at night, but sometimes it cannot be avoided, at least when sober I am less likely to end up in difficulty. Alcohol dulls the senses and slows down reaction times, which when walking home can be a dangerous thing.

  • Less chance of making an idiot of myself when sober

When you are the only sober person on a night out, you can see how much alcohol is affecting people. They do things they would normally not, sometimes embarrassing, stupid things. People tend to flirt more when drunk and this can lead to some awkward situations, and sometimes not very safe situations. People often become less careful about what they say out loud and this can lead to saying some hurtful or embarrassing things. Also when drunk people are more clumsy. I know that I used to trip up over my own feet more and found stairs and curbs of pavements tricker. It can be embarrassing and very annoying to spill your drink all over yourself.

  • Supporting my boyfriend who is trying hard to stay off drink

‘Substance abuse in general (that is the abuse of alcohol or the use of street drugs) is a significant problem for people living with schizophrenia, with over half of all people with schizophrenia having co-morbid drug or alcohol abuse issues’ (www.livingwwithscitzophreniauk.org). My boyfriend has schizophrenia and has had alcohol issues for most of his adult life, but is now trying very hard to beat his alcohol dependency. He simply cannot have just one or two drinks; once he starts he ends up having more and more until he is unable to function properly. He so badly wants to live his life without alcohol and has managed to not have a drink for well over three months now. I admire him for this as it is very hard to give up any addiction, let alone when you have a mind that races all day long and will not shut up. So for obvious reasons we cannot go to the pub together and I would rather not have a drink in front of him. I hope by not drinking I am showing him it is possible to live life happily without alcohol.

I am not saying I will never drink again, I might well do, but right now I just do not want to.

OCD, Anxiety and Me

OCD and anxiety have affected me for as long as I can remember.  They are both linked and when anxious my OCD can get worse, and then my OCD makes me feel even more anxious, it is a vicious circle.

How OCD affects me

OCD wears me out both physically and mentally.  It is exhausting having to redo the same things over and over till my brain tells me it is done to a satisfactory result.  It affects my bed time routine, often making the time I actually get into bed and fall asleep very late.  I can be ready for bed at a more reasonable time, but then I have to recheck things, sometimes making it as far as getting into bed, but then having to get out again.  I can sometimes lie in bed and then notice I have not tided something away and then have to get up again to deal with it, despite the fact I know it could have waited untill the morning.

OCD can make me late for things by slowing me down.  Having to redo things and double check stuff before I can leave the house means I have to factor in more time to get ready for things or I can be late.  Also it often means I over sleep in the morning due to my awful bed time routine keeping me up late.

If I do not get the chance to do something till my brain tells me it is done satisfactorily I can feel uncomfortable.  It will play on my mind that I did not complete my routine, sometimes rushing what I am supposed to be fully focusing on to get back to it.

I am aware that sometimes my OCD can make me come across as odd.  My OCD is not as bad in public as it used to be, but it can flare up more when stressed.  When I go to the toilet I know I can sometimes take longer than normal and do a perfectionist routine which has led to others giving me curious looks.

I have fallen out with people and argued due to my OCD before.  I realise it must be almost as frustrating for others close to me to deal with as it is for me.  When I lived with my parents I used to argue with them about things around the house that would ‘bother’ me.  They would leave something where it did not normally go or rearrange things and I could freak out, getting angry with them over it.  The trouble was I did not do this all the time and it could be hard to predict what would trigger me, making it tricky for people around me.  I used to argue with my parents and my brother quite often over OCD things.  (Since leaving home this has got a lot better as when I visit it is no longer my living space so I do not feel such a need to control it).

How anxiety affects me

Anxiety often makes me over think about things.  If something does not go very well I may replay the incident in my mind and worry about what went wrong.  Sometimes I only worry about it weeks after it happened, or months or some events still play on my mind from time to time years later.

I like to be in control and often over plan things in great detail.  I imagine what will happen and picture the future event like a film in my mind.  If it does not go to plan I can get upset and get very anxious, although often I can take smaller changes to plan, but the bigger things throw me.  Not only do I plan big events in my mind, but everyday events are sometimes planned out in advance, what I will do that day and in what order.

During major change and stressful events I often feel very anxious.  For example after signing the lease for my first flat on my own I felt very on edge most of the two weeks before the actual move.  I felt physically unwell with stomach ache, which I often seem to get when I am nervous.  I was more easily upset either crying or getting angry at those around me over silly little things.  I had visions in my mind of things going wrong and felt like my world could come crashing down on me at any moment.  I was unable to function totally alone and had to rely on those around me such as my parents and support staff to get me through this period.  Part of me was excited to be moving into my own place and I knew that I would cope with my families help, but I still felt very anxious.

Like OCD, anxiety is mentally draining, I feel tired a lot of the time even if I have not done much physically that day.  My mind never seems to stop thinking and it sometimes feels as if it is racing to get all the thoughts out.  On my worst days this can give me a headache, but mostly it just makes me feel tired.

I find silence hard to deal with as I can then hear my own negative thoughts too much.  I find distraction helpful, doing something that requires a lot of concentration such as crafting, or writing.  I also find background noise helps from the radio or TV, although I do prefer a decent programme that can take my mind away from my thoughts, any noise is better than total silence.  Although I do like silence when trying to go to sleep last thing at night.

In the past I have suffered with depression, which I am sure is brought on by my anxiety.  I end up over thinking everything and feeling so negative that I think there is no point to trying anymore.  Depression is the most tiring thing of all, I end up way over sleeping, not dressing, hardly moving except to the bathroom and maybe to sit in front of the TV watching rubbish this that requires very little brain power.  My anxiety when at its worst is like a spiral dragging me down, feeding on itself with negative thoughts.

Things that help me

Being organised and tidy with my things helps me feel in control.  Having my things in a set place where they live helps me.  Also sorting and rearranging is something I enjoy.

Cleaning also helps me feel a sense of control and it is satisfying seeing something look better than it did before.

Writing lists or mind mapping can help me to organise my thoughts somewhat and not feel so overwhelmed when I have a lot to do.  For example when I at university I found mind mapping helpful when the work load got heavier in my second year as it showed me how each little task led towards getting the bigger goal done.

Having certain loved ones around and friends helps to not only distract me, but sometimes helps me see the positive things in my life and feel better about myself.

Benefits

OCD and anxiety are things I would much rather be without, but they do have a few benefits.  I am more organised due to my OCD, having the things I need to hand more often than I might otherwise.  I plan things out more thoroughly which can be helpful at times.  It helps me to be tidy both in my living space, and in my personal appearance.  The fact that cleaning is something I find satisfying helps keep me hygienic.  I sometimes get things done faster and better thanks to my anxiety as it can play on mind that something needs doing, and I will do it quicker, but I am also anxious of doing a good job, so I am extra careful.

Please understand that I am not always so anxious or OCD and some days are better than others for me.  I have learnt to deal with some situations a lot better now, especially in public.  I am still trying hard to deal with my anxiety and OCD issues and find that I win the battle with my mind more often than I used to.  I think that my life is more stable at the moment which is helping a lot.  Also maturity has helped me; I understand myself better now and know more often when my OCD or anxiety is taking over, so can try to take steps to prevent it going too far.  When something stressful or upsetting is going on in my life I can fail to stop my anxiety, but it always seems to pass in the end.  I hope this blog post does not make others feel worried about doing or saying the right things in front of me.  I understand that other people have issues and that sometimes I just have to learn to deal with them.

How OCD and anxiety affects sufferers varies a great deal.  However I hope this blog post gives some insight into what it can be like to live with these issues.just-my-mind