Nothing in the NHS is straightforward any more

Yesterday, I discovered I had completely run out of my anti-depressants and would need to pester the GP surgery for an urgent prescription. The secretary was fine about it, but said I’d need to have an urgent doctor’s appointment as their computer system wouldn’t allow them to hand me a repeat prescription that was due. They didn’t know why.

This kind of thing has happened since we’ve had computer systems, and even before. I get it all the time. But the NHS is legitimately getting more confusing.

When I last saw a psychiatrist, it was not at the [local area] Community Mental Health Team. It was at NHY 2-6 *. That’s the new name for it. The psychiatrist introduced himself as an ‘SP4 doctor’. When I asked him what this meant, he said “What used to be called a registrar”. It’s fine if they want to reorganise things, but could they not at least name them with words rather than just numbers and letters?!

I’m helping out with a charity project called ‘Christmas for CAMHS‘. The only issue with the name is that I worry that many people don’t know what CAMHS is. It stands for ‘Child and Adolescent Mental Health Services’. ‘Child Psychiatry’, in old fashioned language. If you know what CAMHS is, it’s a very nicely straightforward name for the project: we donate Christmas presents to children in mental hospitals.

You may notice I’m not so keen on the change from ‘psychiatry’ to ‘mental health’. I realise ‘psychiatry’ is starting to sound old fashioned, linking it with old fashioned horrible attitudes to mental illness. But it often sounds euphemistic. Patients are often described as ‘having mental health’. Here, the word ‘health’ means ‘illness’. We all have health, but apparently when it comes to the mind we won’t dare say ‘illness’. No one has ever described the problems with my legs by saying “She has leg health.” Thank goodness.

I feel like such an old fogey.

Then there’s the way the mental health services in my area have been organised, which means it’s very difficult to use more than one service at once. I appreciate this might be a bit unusual, but not totally radical or the kind of thing you need to stop happening by accident. It’s also very difficult to find and contact mental health wards as part of Christmas for CAMHS because information online is often out-of-date or completely non-existent.

I’m already ill. I don’t need the exhaustion of trying to work out who is doing what with my healthcare.

*This is not actually the name, because that would reveal whereabouts I live. But it’s a similarly incomprehensible sequence of numbers and letters: I have no idea what it stands for.

I got this letter just after being declared too sick for work

Just a bit of background: I’m on Employment and Support Allowance, and have just been moved into the Support Group.

Employment and Support Allowance is what you claim instead of Jobseeker’s if you are too ill or disabled to work more than 12 hours a week. There are two categories: the Work Related Activity Group, and the Support Group. The Work Related Activity Group have to demonstrate that they’re trying to get into work in the long term eg. by volunteering or working on their skills. The Support Group don’t have to do anything, because they’re too disabled or ill.

Today, I got this letter. I don’t know why. I haven’t seen the job centre in ages but they do know who I am.

The other side of the page says I must bring my latest bank statement, ‘if you’re currently working, your most recent payslips’ (errr, no I’m not working), details of any savings, details of any property I own, proof of immigration status if I’m not British (luckily I am), and all of the above for my partner too if I have a partner (luckily I don’t).

It then hilariously states that “We are committed to treating people fairly, regardless of their disability, ethnicity, gender, sexual orientation, transgender status, marital or civil partnership status, age, religion or beliefs’

This is beautifully ironic when they’ve told a disabled person to be where they say when they say or they will no longer have any money to live off. Also to prove for the fifth time that I’m eligible to work and claim benefits in the UK.

To the woman who called me a ‘freeloader’

I actually started this blog to show people how hard it is to claim disability benefits. But I’ve written very little about it. It’s largely too complex to know where to start. But today, a woman had a rant at me about benefits, so I’ll write here what I wish I’d said to her.

“As long as you’re not a freeloader. Some of these people have never worked a day in their life”

I’ve worked. I tried working full time, then I tried working part time. Nowhere will keep me, because I can’t reliably turn up and function because of my anxiety and fatigue. I still try and do bits of permitted work, and am talking to Remploy (an agency helping disabled people find work) to try and find something suitable for me with my disabilities.

I didn’t claim benefits initially – I lived off my savings. I then started claiming Personal Independence Payment in the hope it would help me to continue working. The idea of PIP (what used to be DLA) is that it covers the extra costs that living with a disability brings. I hoped it would pay for taxis when I couldn’t get to work by bus. I couldn’t keep that job, or the job I had afterwards, so I then succumbed and claimed Employment and Support Allowance, the equivalent of Jobseeker’s Allowance for people who are too ill or disabled to work.

So I have worked a day in my life, but some people literally can’t They’re severely disabled and not capable of any real work – such as someone with severe learning disabilities, who has a mind largely like toddler’s mind and thus doesn’t even understand what a job is. And some people have never managed to find appropriate work opportunities as they are so few and far between. More on that later,

There are always people who’ll take the piss. But there’s really no need to assume I’m one of them, particularly as you’ve only seen me three times in your whole life and we’ve hardly held a conversation.

“There’s plenty of jobs out there”

That doesn’t mean any of them will go to me.

There are many jobs out there that I look at longingly, and then realise I just wouldn’t be able to do. I do not have sufficient energy to do a full day’s work. It makes me feel pathetic to say that, but I’ve ended up falling asleep on the job or trying to discreetly nap in toilet cubicles just to get through the day. I can’t do anything that demands people skills because I’ve got Asperger’s Syndrome and when I get anxious, I cannot deal with other people. They terrify me.

There are also many jobs out there for all manner of things I’m not qualified for. It’s irrelevant how many job opportunities there are if they’re jobs that I can’t do. But y’know, maybe I should just go “There are plenty of jobs for electricians; I’ll just apply for one not knowing which way up a fuse goes!”

“I’ve got six things wrong with me and I still work”

I could go down the petty route and go “Well I’ve got thirteen things wrong with me” but that’d just show how stupid the point is. I can say there are thirteen things wrong with me because that includes haemorrhoids, and about four diagnoses that are usually summarised as “weakness and pain in legs”. So, not only can your ‘six things wrong’ include minor things that wouldn’t impair your ability to work, but the number is completely irrelevant. If you have one thing wrong with you, and that ‘one thing’ is a spinal lesion that means you’re paralysed from the neck down, it’s going to be hard to find a job.

Also, congratulations that you’ve found suitable work for your difficulties. I’m determined to believe there is a way for me to earn a living with the disabilities I have, but I haven’t found it yet. I didn’t grow up with all of these conditions, and I had to find out how some of them affect me in the workplace. I’m trying to find out what the best path is from here, but I can’t instantly find a suitable career and train for it and get myself employed. These things take time.

To be honest, I’m surprised you’ve found someone who will employ you. Many employers will chuck your application in the bin the minute they find out there’s anything ‘wrong’ with you. The law says they can’t, and they must make ‘reasonable adjustments’ but they can always say it was something else. They’ll claim it wasn’t my disability, they other applicant just seemed more confident or something. It’s very hard to enforce the law here, and the reality is no one wants to employ me because I’ll take far too much sick leave.

Jobs that are suitable for disabled people are probably in much higher demand than they can fill. Think how many people want to work part-time: not just because they might be disabled, but because they might have children or other people to look after, or they might be studying part time for a future in a better career. There will only be so many part-time jobs, not one for everybody who wants/needs one. That’s the harsh reality.

“People say they can walk when they can. Did you hear about that one in…? ”

Yes, they do. Do you know how many people falsely claim to be disabled to get benefits? About 0.5%. That’s all.

(Source: https://www.gov.uk/government/statistics/fraud-and-error-in-the-benefit-system-financial-year-201516-estimates , figure for fraudulent Disability Living Allowance claims. Note that the rate of fraud for Jobseeker’s Allowance is 2.9%)

Most people who are going to cheat the system simply lie about how much they earn, to pay less tax or get low-income benefits that they’re not entitled to, while doing sneaky cash-in-hand work. (http://www.cas.org.uk/features/myth-busting-real-figures-benefit-fraud) Why? Because it’s much, much easier than pretending to be disabled.

It’s actually really hard to claim disability benefit when you actually are disabled, let alone when you’re not. You get interrogated. There are huge forms you have to fill out, attaching loads of medical evidence, and getting your GP to write to them because they can’t be bothered to do their job and contact the GP yourself. They then send another professional to assess face to face. This professional will sit there trying to catch you out by trying to pressure you into moving in ways that are painful with your disability, so they can write down that you can eg, get out of a chair unassisted. They’ll order you to do it. They’ll also say things like “You’ve said you watch Coronation Street, that shows you can pay attention, therefore you can work”. Great! I’ll try putting that on my CV, shall I? “I can roughly follow what’s going on in a single TV soap, and that’s the limit of my mental capacity. Please employ me”

Once you’ve done that, they routinely refuse claims the first time they’re sent. This may sound paranoid, but it’s happened to everyone I know who’s applied for Personal Independence Payment (the ‘new’ Disability Living Allowance), no matter what their condition is.

Why do you seem to think I’m cheating the system? Because three people in every thousand are? Because I don’t seem disabled enough to you? Because you think disability means ‘wheelchair’ and if I can walk everything else is irrelevant? Have you ever even asked about my disability? I don’t talk about it constantly. I like to have other things in my life, and not just be a walking mass of medical conditions. People probably don’t want to hear about all my troubles all the time, and I’d like to forget about them and focus on the positive. That’s why I’ll say “I went to the Art Festival and I had a go at making some felt” rather than “I went to one day of the Art Festival, struggled to talk coherently, and twisted my ankle. I tried to sit down as much as possible but I went home after a few hours because I felt exhausted and my legs really hurt after walking around so much”. I don’t want to be that depressing.

Disability benefits have some of the lowest rates of fraud. I am utterly sick of us being scapegoated . It is in no way my fault if you’re not happy with your life. Now bugger off and leave me alone.

I am apparently too difficult or otherwise not right for any mental health help in this country. I fought for years to get mental health help and I don’t know why. It feels like a bad habit I need to quit

• Can only be distressed for 20 minutes on helpline
• Not allowed to swear when distressed on helpline
• Get told everything is my own choice
• No services for autism without learning disability
• Making complaints just cause more grief
• Cannot be treated for my eating disorder because I also self-harm in other ways
• Psychiatrist reported my autistic behaviours were deliberate
• Others have said similar and wish I would just kill myself becauser I don’t know how to stop being a twat

I complain about not getting any help for so long but I think I was just protected from more rejection

Too ill to even blog about this stuff any more.

To all of you, I’m sorry I’m like this and you don’t deserve it.

Emailed any nearby private counsellors who deal with autism to ask if they can help me deal with other people.

Losing hope. Already shit services are losing funding.

Terrible psychiatry, and fighting back

In April, I saw an incompetent psychiatrist. The first psychiatrist I ever saw was also dangerously incompetent and infuriating, but aged 17 and very unwell I lacked the knowledge and strength to complain. But now I am older, more clued up on my rights, and have received a lot of good psychiatric treatment in between.

So I complained through PALS – Patient Advocacy Liaison Service. This is the standard system of making a complaint about NHS treatment. The complaint reply took far longer than I intended, and I was unable to gain any information about what was going on while I was waiting, despite trying very hard to do so.

The letter I got back to my acknowledged a single error in the psychiatrist’s assessment, and ‘apologise[d] for the feelings of hopelessness’ that the appointment had caused. They recommended that I should see the letter that the psychiatrist wrote to my GP, as it apparently proves she was a competent psychiatrist.

I don’t normally see letters doctors write about me. I am left out of the loop, feeling powerless. I feel it’s basic respect to give someone the information written about their own illness. But I don’t get it from rheumatology, and it’s controversial to even mention that mad people may have a right to know what doctors have said about their illness. If you agree with this, because mad people are difficult and won’t understand, consider that my local NHS eating disorders clinic will review all letters with their patients before even sending them to the GP in the first place. They can do that with people who are mad enough to starve themselves until they risk death. They do it because they realise patients feel better if they are treated with respect. I feel disrespected and powerless. And I feel others want to keep me powerless.

PALS never gave me a copy of that psychiatrist’s letter. Of course I asked them. So, when I needed to see my GP a few days ago, I asked if he could print off that letter, and he did.

PALS responded to my complaint by telling that the psychiatrist was listening to me after all and my concerns were unfounded, and this is shown by the letter she wrote about me. Now I have that letter, I see it contains vast amounts of incorrect information. This includes:
– getting my age wrong
– there is no mental illness in my family (there is)
– my movement was normal (rocking, shutting eyes, hitting myself in the face..)
– I don’t think about killing myself (I explicitly told her otherwise)
– I quit my job ( I was sacked)
– I visit my family once per week (about every two months)
– I read books and enjoyed it (she saw my diary, and said “I see that you read.” I tried correcting her. So did the big print saying DIARY on the front of the diary.)
– A description of a sleep pattern when I repeatedly stated I didn’t have any sleep pattern
– My anxiety and depression are ‘in remission’

It also states that my bizarre behaviour is ‘deliberate’ rather than due to autism or mental illness. It advises I improve my sleeping by drinking fewer carbonated drinks (is there any evidence of that helping?!)

Despite stating my depression is in remission, it mentions lots of symptoms of depression that I was experiencing. I am unsure what she thinks they are due to, if not depression. I am in low mood, don’t look forward to things, cannot get up in the morning, feel tired, feel worthless, think of harming myself; but am not depressed. Possible, but I would like some explanation.

I will fight this as best I can, because I don’t want her to see a patient who is really unwell and write similar nonsense only to have that patient die a week later. I don’t feel optimistic that I will get anywhere with this complaint, but I feel I should try.

I have requested a copy of my medical records. You have the right to know what doctors say about you and your health, provided you specifically ask for it and pay £50 for it. To put that in context, unemployment benefits typically give you £70 per week.

We are out of the asylums, but we have a long way to go.

How To Have A Mental Health Crisis

NB: This is a bitter, sarcastic post. If you’re trying to put faith in the system, don’t read it.

1. Have your crisis in the morning.

Plenty of staff are available at this time. Please note, that I mean in the morning after 9am. Earlier than that is very inconvenient. You want to break down when lots of people are working standard hours and lots of other mad people haven’t managed to get up yet. If you can’t manage the morning, try to still aim for within normal business hours.

2. Have your crisis at home.

If you’re not at home, you might get asked if the crisis team are ‘disturbing you when you’re out and about’. Outside is for well people, if you’re truly going mad you should be at home. Oh, and you need to know your postcode. Are you on a motorway bridge, contemplating throwing yourself off? You need to know the postcode of that motorway bridge if you want someone to come and calm you down.

3. Be able to talk

You need to function enough to explain why you can’t function. On a serious note I want to get using Next Generation Text for this purpose. It’s aimed at Deaf people or people with speech impediment. I don’t have a constant speech impediment but stress can switch my speech off.

4. Mention self-harm and suicidal feelings, but don’t overdo it.

You’re only saying this to tick boxes. Talk about how you actually wanting to actually do anything like this rather than following their instructions will result in ‘Nonononononono’ from whoever you are talking to. You’ve scared the poor thing.

5.Know exactly what will solve the problem, if at all possible be a qualified mental health professional yourself.

Remember, this isn’t like when you need help in a physical emergency like a head injury. You are expected to tell the professional what to do when they ask. While in extreme distress, try looking up various treatments or strategies and decide which one is right for you. Do you want them to let your normal doctor know that your condition has got worse? Do you want them to come and see you (see point 2)? Do you want to talk to the person on the phone? Have a good think about it before trying to get help.

So now you know all the facts – good luck in your next mental health crisis!

Fitness for work – the real life questions the system never asks

PurplePersuasion has written an excellent blog on being declared fit or not fit for work by the government. These are very much the problems I encounter and why I am currently claiming disability benefit. A lot of the difficulties relate to my autism – it’s hard to travel and interact with people and keep track of things.

Person-First Language is a Load of Shit

There is an annoying movement to not call people ‘disabled’. Instead, we must say ‘they have a disability’. Or, better still, they are ‘a person with a disability’. This is so we are putting the person before the disability, so we remember they are people.

If you need a sentence rearranged to remember that a disabled person is actually a person, your problem is far worse than can be solved by changing some words around.

I sometimes hear that we should not call autistic people ‘autistic’ because we don’t call people with cancer ‘cancer’ or ‘cancerous’. I don’t think language has evolved like that to not hurt people’s feelings. The English language is full of weird anomalies like that. It doesn’t follow nice patterns. You can see this clearly because while you can say “I am autistic”, you can’t say “I am Asperger’s-ic” or “I am autistic spectrumic”. I have heard “I am Coeliac” but not “I am Crohn’s” Some names of conditions just lend themselves better to adjectives.

It upsets me when I read the cancer analogy, because it also implies that autism isn’t part of my identity. It implies that it’s something that’s only bad and needs to be cured. I see my autism as a bad thing, but many don’t, and even I don’t see it as something that’s like a tumour that needs removing. I don’t know who I am without autism because I’ve always had it and it overlaps with personality. I feel like people who insist that I am not “disabled” but “someone with a disability” don’t want me to be me. Ironically, that’s much more hurtful than people who just use the wrong word.

Watching films when you have Asperger’s

I’ve watched a fair few films lately, and have been wondering if having Asperger’s Syndrome affects how I see and enjoy them.

For instance, I was watching ‘Thor’ with friends, and I didn’t like the film much. The character Loki annoyed me, partly because he appeared to be pointlessly staring at the camera a lot of the time. But then my friend said “He expresses so much with his face” and another friend agreed. So perhaps they see something I don’t. My ability to read facial expressions is supposedly poor. Then again, I can tell that he’s sad, so maybe I just don’t like the whole looking-at-the-camera thing and it’s a matter of taste. It’d be intriguing to know what other’s see in Loki’s face. To me he always looks sad, and when I look at the images below for a while, I think he also looks worried and in the third one he looks a bit surprised. I’ve been told it takes longer for me to work out what a facial expression means.

I also watched ‘Sunshine’ and annoyed my partner because I kept grumbling about it. It annoyed me because of the scientific inaccuracy and inconsistency. I’m very pedantic like that! I’ve learned to expect film deaths to be unrealistic: no one ever stays unconscious for a while before they die, or fades out of consciousness gradually. Instead, they make some final important dialogue and then lose consciousness and everyone behaves as though they are now definitely dead. Ironically, a realistic death would be quite disturbing for me to watch, particularly as people get murdered a lot in films.

The scientific accuracy thing intrigues me. A story is about ‘suspension of disbelief’ – the ability to become immersed in a story so much that you ignore all the things that could never actually happen. I’m not sure how it works. I can watch a superhero film and enjoy that, but because I expected Sunshine to be a ‘serious’ sci-fi, the nonsense bothered me. I think the lack of consistency bothered me more; what killed one character did not harm another. This properly pissed me off! I was told some of it was symbolic. I’m not sure I’m capable of understanding ‘symbolic’ bits of films or books. It baffled me a little in English lessons at school, but I’m aware it baffles lots of other people as demonstrated by the meme below.

Sunshine is one of many films where I’ve struggled a bit to remember which character is which and follow what is going on. I suppose I’m limited with these skills in real life, too! Generally, a film is easier than reality but a few films still confuse me.

I can still enjoy films. I recently watched ‘The Prestige’ and thought it was really good. I would watch it again. Once I watch a film, I go and read about it online and learn things about it. If it’s based on a book or another film, I often want to read/watch that. I get to ‘geek out’ on it, and get many more hours entertainment than the ~2hrs the films lasts. So perhaps there’s good and bad when it comes to Asperger’s’ effect on watching films.

Diagnosing kids and teens with mental illness

Charlotte Walker, an excellent mental health blogger, has been tweeting about diagnosing mental illness in under-18s. It’s a subject charged with controversy. The idea of labelling and medicating children has a lot of fierce opposition. On the surface, it’s easy to see why.

Adolescence is a troubled time for us all, and all of us will have grown out of issues we had when we were young. Psychiatric medications, like all medications, are not usually tested in children (it’s an ethical dilemma – we can’t use kids as test subjects, but then we have no information on how safe something is or isn’t for them). The idea of labelling a young person with a psychiatric diagnosis is something that makes a lot of people squirm.

Currently, psychiatrists are reluctant to diagnose and treat mental health problems in anyone under 18. Once you hit 18, it’s a ‘magic switch’ where it all changes. Antidepressants are offered the minute you report anything. I realise that we must make a cut off point somewhere, as in law (a 17 year old getting drunk vs an 18 year old), but I wish psychiatrists could be a bit more sensible with it. An 18 year old is still young. On the other hand, a 17 ½ year old is not significantly younger.

The problem with the attitude to mental health issues in young people is that, as nasty as it is to think about, young people do become seriously ill. Regardless of how much my teenage hormones and typical adolescent ‘lostness’ had to do with it, I was suffering a lot when I was young. I have a lot of scars from self-harming at that age. In addition to that, what I was going through was clearly not typical adolescence, whatever professionals tried to claim! I went to school with hundreds of typical adolescents and they weren’t hitting their heads on walls, repeating things over and over and over to stay calm, finding it hard to go out anywhere due to panic, so tired they fell asleep during most lessons, inflicting injuries on themselves at most opportunities… I could go on. Other students asked me if I had a ‘mental problem’. They knew. I knew. But no one would recognise it, because I was under 18.

The truth is, even if you label a young person with a particular mental illness, there’s nothing wrong with that label changing or disappearing as they get older. The important thing is they get the help they need now. The diagnoses given to adults are far from constant: it’s common to change mental illness when you change psychiatrist!

Medication is the part I admit is a minefield. Medication is harmful to adults as well as children, with a wealth of nasty side effects. GPs should not be offering antidepressants so casually. However, when there was a panic about antidepressants making young people suicidal, more children died by suicide as those who were severely depressed did not get the necessary treatment. The thing is, medication’s far from the only treatment. Appropriate, targeted psychological therapies for children could work wonders. As could diagnosing them – enabling them to understand what they’re going through and find stories of others like them. I spent too many years wondering what the matter with me was. I want it to be different for the next generation.