take your ableism and get in the bin.

Ableist stories and examples

 

CN: talk of suicide, bullying and abuse

Yesterday I was subject to the most gross ableist attack by someone I had thought was a close friend. In her words, she accused me of ‘using my illness to get everything’. She was seething with vitriol, practically spitting the words.

I presume she meant that by having comorbid diagnoses of Bipolar II and BPD, I’m somehow able to swan around my penthouse suite that my oh-so-fortunate disability has ‘won’ me, being attended to by vast swathes of semi naked servants who are wafting me with gold plated fig leaves. When I get bored of swanning, I can go out to my high-powered job that I’ve managed to snag by virtue of being mental, because mental people get all the best jobs, don’t they? Then I can come home to my loving husband, children and stable family life.

No.

Just, no.

I have HAD it with pathetic and nasty jealousies, of oppression one-upmanship and everyone staking claim to some disadvantage more than others. I am sick to the back teeth of having to justify how fucking difficult my life is to people who should know better. Of having to justify the money I live on to people who are able to earn themselves a living in a way that I cannot, as hard as I have tried. Why am I constantly having to demonstrate my illness to people who claim to be allies?

If you have a problem with me, speak to me. We’re not twelve. Or if you don’t want to speak to me, get the hell away. Don’t stick around pretending to be nice, take take taking my emotional energy, telling me I’m so great, all the while seething your festering resentment. It’s childish and deplorable and it’s called gaslighting. If you really think that I get so many advantages because of my physical and mental illnesses I wish to god you could walk in my fucking shoes for a day. Actually, you’d be unlikely to even put them on, since I can’t leave the house alone. So privileged, much advantage.

You can dislike me. You can dislike my behaviour. You can refuse to accept my profuse and multiple apologies for acting like a dick when I’ve been unwell. But know that when you attack me for my disability, that is ableist behaviour. You are exercising your power to attack someone disabled for their disability. If you want to do that, know that you are ableist.

Ableism example

When you attack someone with BPD who already has constant suicidality and a fucking ruptured and fragile sense of self, know that you are knowingly causing harm beyond what a non-disabled person would experience.

When you accuse me of using my illness to bully people and get what I want, know that you’re silencing me from one of the few outlets I have – to speak about my illness, my disability and the structural oppressions I face.

When you say to me that I use my disability to bully people, I hear that you actually don’t believe it’s a disability at all. If you’re not prepared to accept the very few and limited occasions that my illness has made me act like a dick (obviously I’ve acted like a dick on many many other occasions, completely unrelated to any mental health diagnosis), and you’re not prepared to accept my apologies or reparations for that shitty behaviour, then really you should not enter into friendships with disabled people. Because you’re giving us the false impression that you might, you know, actually show some empathy and understanding.

But that’s just me expecting special treatment.

Ableism story

Further reading: this is a nice quick blog about the behaviour of people with BPD.

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Hittin’ it, not quittin’ it

Hello again, I’m back after a couple of months of being on medication that dispelled any creative urges, including the capacity to complain when being treated like dirt by mental health services. I suppose it’s a cunning plan on their part, dope you up so you no longer have the faculties to oppose their blatant bullying and discrimination.

I’ll warn you in advance, this is a long post, but it’s worth a skim till the end. 😉

I’m afraid I’ve decided to join the mischief of rats leaving the sinking the Good Ship NHS, and through the kindness of strangers I’ve managed to raise enough for a few months private treatment at least. This blog post is just to let you know that I have no intention of deserting my brothers and sisters still dealing with the nightmares of NHS mental healthcare, I’m still here fighting for you.

And if you think I’m overestimating how awful Camden and Islington’s acute (emergency) mental healthcare is, don’t just take it from me. Here’s there full report on Camden and Islington Foundation Trust.

http://www.cqc.org.uk/provider/TAF/inspection-summary#mhcrisis

Now for those of you who can’t be bothered to go into the full report, I’ll summarise. Here are the ratings the Care Quality Commission uses:

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Camden and Islington Foundation Trust as a whole have been awarded a rating of “requires improvement”. The report details their findings in full.

Now, the bit that those poorliest are on the sharp end of, is the Acute Care division. This includes Crisis Teams, Psychiatric Hospitals, Psychiatric Assessment Teams (the ones who decide if you need the nuthouse following a suicide attempt) Recovery or Crisis Houses and short-term day hospitals. I’ve had the joy of being on the receiving end of all of these throughout my time in Camden.

The Care Quality Commission deems Camden and Islington Acute Services to be inadequate, the only area of the trust to receive this worst rating. So those in the most desperate need are receiving the worst level of service in the entire trust.

The CQC found:

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I’m not going to rephrase the report. It speaks for itself. What I will say, though, as a citizen and a taxpayer I have the right to raise issues when I meet with bad practice. This is not my subjective assessment, this is the objective  assessment of the CQC.

I have been unlawfully detained on a ward because the doctor refused to gain my informed consent before admitting me as a voluntary patient. Once I was admitted I was told that if I chose to leave (“voluntarily”) I would be sectioned. I was literally sitting in the kitchen of a psychiatric hospital – their choice of setting, privacy presumably not being a priority – holding my iphone with the information page, published by their own trustshowing them that their own laywers deemed my admission was unlawful. It made no difference. I had my human rights, my dignity and my chances of recovery stripped away by a staff culture that allowed an authoritarian contempt for patients.

At 9am the next morning I phoned Camden and Islington’s lawyers (as named on their own information leaflet), and was immediately summonsed by the hospital manager and informed that I was free to leave.

Of course, I tried to complain. To do so, I needed a copy of my medical notes which I had to obtain via a Subject Access Request under the Data Protection Act. Camden and Islington had 40 days in which to produce these, but informed me that ‘due to backlogs’ they were not meeting this statutory service standard. When I finally received my records, nearly four months had passed and I just wanted to move on.

On another occasion, I attempted suicide and was assessed as needing crisis care. When I arrived at the unit, I was told they would not treat me because I was obtaining medication via a private doctor. This is in direct contravention of  Section 3a of the NHS Constitution which states:

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Of course. I complained (can you see a pattern here?). But my complaint, researched and drafted weeks later when I was less ill, was useless to me on my discharge from hospital; turned away from Daleham Gardens Crisis House, still with bruises on my hands from the catheter and cuts on my arms and legs from my poor tortured mind. They let me walk away. They refused to treat me on the grounds that they could not manage the ‘risk’ of me receiving medication from another provider, but they were prepared to deal with the risk of letting a recently suicidal patient who had been deemed at need of crisis care, walk away to a home where I lived alone with no support or monitoring.

Of course, dear reader, I complained. In this case my complaint, again, heard some months after the event and way too late in the day to give me the help I needed at the time, was upheld. I was thanked for ‘bringing this matter to the attention of the NHS’.

On a recent visit to the same unit, I saw that they had updated their patient information to include the statements that ‘we cannot treat you if you are receiving private healthcare elsewhere’.

So the outcome of my complaint is they have acknowledged that they are in breach of the NHS Constitution, but instead of finding a pragmatic way of dealing with the fact that these days people purchase many things perfectly legally from online pharmacies, from hair restoring medication to the weight loss medication I was taking. Instead of responding to change, Acute Services have chosen to continue to ignore their own ruling bodies and operate as they please.

I wish this was the end of this catalogue of woes. But this years my mental health seriously deteriorated. I found myself accessing Acute/Crisis services more and more often, and eventually asked for a referral to one of the day hospitals, in this case the Jules Thorne day unit on the St Pancras site. I was offered care at Daleham Gardens, but since they had shown so little care for me in the past I had little confidence that I’d get fair treatment there.

I was assessed at Jules Thorne and although I found them a little less than progressive in their attitudes I agreed to give it a go. I was desperate for some help and I knew some services offered by the day unit (like art therapy) really did help.

A few days later I received a call from the person who assessed me who seemed hung up on a comment I had made. I’d asked her if it were possible to email (rather than phone) the service if I couldn’t make it in to the unit. The worker repetitively emphasised that ‘we are not an email service’ and although I understood that, I asked her if she could provide me with some policy or rationalisation for this, because it was something which has been accommodated at every service I’d ever attended in the past. Phone phobia is not uncommon with those with high anxiety.

The woman flat out refused to answer my question. I can only describe the conversation as akin to John Humphrys trying to get an answer out of Boris Johnson, with each of my questions being stonewalled. By this point I was appalled at the way I was being treated. I had briefly sat on the Board of Governors before my health deteriorated and was aware of how staff were supposed to be trained to work with service users in a respectful manner, and to be frank I would have been disgusted at being spoken to like this in a shop, let alone a caring institution.

The conversation reached an impasse, and I asked to speak to a superior. When the call came through, I missed it and so phoned straight back. I spoke the the deputy manager, Mary Hurley, who seemed almost hysterically angry with me. She asked me if I was suicidal and I replied I was, and yet she could not understand why I was upset that a staff member wouldn’t answer my question.

I replied that I could only make a decision about coming to work with the staff at Jules Thorne if I felt I would be treated with respect, and thus far I was concerned I would not be.

It was at this point she really seemed to lose her professionalism. She said (and I took notes, as I could barely believe my ears)  ‘as far as I see your expectations are unrealistic. I can see from your file that you have made complaints in the last about my colleagues’.

I was disbelieving; firstly that copies of complaints of a service that we know – through the CQC no less –  to be inadequate, were being held with my clinical notes. The only reason for this that I can see is that it clearly marks me out as a ‘troublecauser’, and as a result prejudices my care. I was aghast that complaints we being held on my care notes (it’s explicit in the complaints policy that complaining should not influence future care) but Ms Hurley stated that she was no longer willing to discuss the matter, that she had been on the phone far too long and lastly the somewhat daft claim, repeatedly stated, that ‘you’ve phoned here five times this afternoon’ Once, Ms Hurley, once.

In a state of extreme distress, I asked to speak to another manager. I was told that Marian McHugh was based at another site and that the next manager up the line was someone called Lindsey Cole. I asked if I would be called back the same day and Ms Hurley said that was not guaranteed.

At a subsequent meeting some weeks later with Marian McHugh, she confirmed that she was informed that same day of the call with Mary Hurley of my wish to speak to a manager. However, she did not call. So Marian McHugh, service manager of the acute day units, chose to leave a suicidal person for a week with no contact – she could have even spoken to the crisis team and asked them to check up on me, but heard nothing.

She finally called me a full week later. You can imagine how I felt about the service by this point.

Result: Once more, I got no care. I’ve been too ill to complain, but as I recover, I shall raise my concerns once more. Sick of getting nowhere with the formal complaints department, I have arranged to speak to my MP Keir Starmer and will copy in that  letter to the MP for Islington, Jeremy Corbyn. I am making attempts to meet with Richard Olszewski, the Camden Council Cabinet Member for Health and Social Care. I will speak to the Care Quality Commission and the Chair of the Board of Governors.

In 2016 the CQC damned Camden and Islington Acute Care with the worst possible rating they could receive, and yet they continue to fail the most vulnerable people in the borough.

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Just in case you’re interested in how Camden and Islington should  be working, why not wade through a copy of their core values:

Our values

Our patients expect the very best levels of service, respect, dignity and compassion and as an organisation we are committed to demonstrating these standards all day, every day. Hundreds of staff and service users worked  together to create a set of values which make sure people who use our services  get the best possible chance of rapid recovery and receive the best care possible.

Our staff are committed to living and breathing our values, and everything we do should reflect them in full.  We also make sure that when we recruit people they demonstrate the right behaviours before joining our Trust. However, if staff don’t live up to our values, let us know – and even better, when we do live up to them tell us how well we have done .  All feedback is shared with relevant staff and teams.

We have six values which ensure we are welcoming, respectful and kind.  Professional in our behaviour. Positive in our outlook. Working as a team C&I is your partner in care and improvement.

Our six values are:  

Welcoming

We aim to use the 3Ms when we welcome you:  “My name is … , My role is … , May I help you?” We will always be friendly and polite, calm and approachable, and ensure we make time for you.  We are accessible and open, helping you to access the right services at the right time so you have the best chance of recovery.

Respectful

We are respectful so you can feel understood and you feel like an individual.  We champion the rights of people with mental health problems.  As well as respecting your dignity and privacy we look out for the dignity and privacy of others, and speak up if it’s compromised.

Kind

We are kind so our patients feel cared for. When we are kind it means we are compassionate, helpful and encouraging.  It means we are patient and sensitive.  We go the extra mile to help and encourage others to do things for themselves.

Professional

By being professional we demonstrate our expertise and knowledge so you feel safe in our care.  It also means we constantly develop our own skills and ensure we and others have had the right training.
It also means we speak up if we see unsafe care, and learn from any mistakes.

Positive

We are positive ensuring we act as a role model and encourage positive attitudes and hope. We enjoy feedback on what we do, involving everyone in any improvements we make. And we deliver a consistent service, based on best available evidence.

Working as a Team

By working as a team we mean we work together so you feel involved.  We listen and communicate with each other, offering solutions to issues.  We look for opportunities and inspire others to achieve more. We listen even if the message is uncomfortable as we always want to do things better.

Our values are designed to drive up the standards of care across our Trust and to assure you of the quality of care and treatment you will receive as you journey to recovery. Our values continue to be embedded throughout our organisation and are part of our continuous drive and commitment to a values-led culture. This work is referred to in our organisation as ‘Changing Lives’.

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This is how it feels.

Are you one of those folk who ‘don’t really understand’ mental health problems? Pull up a chair, my friend.

IMG_5762I am terribly, terribly sad and nothing is making it go away. I know people say that they can’t really understand what mental health problems are like if they haven’t had them – well please allow me to illustrate my example.

A few years ago, I lost my mum to lung cancer. We were close and I very much looked up to her. I thought her death would be the very worst thing that could ever happen to me, and it was pretty horrific.

The way I feel now is worse. With no reason. No bereavement counselling, no reassurance that I will work through ‘stages’ to recovery, no concerned relatives and certainly no fucking flowers. Just a terrifying feeling of darkness, worthlessness of myself and everything around me.

My mental health nurse has moved on to another job and I won’t get another, because the NHS has no money and they have to focus on the people actively taking overdoses rather than the ones fighting the urge. My Personality Disorder psychiatrist  sees so many chaotically ill people – emaciated, angry, covered in scars and cigarette burns – that he understandably says I’m ‘doing well’. I get where he’s coming from, but it’s cold comfort.

I’m so grateful to my friends for sticking around the bundle of definite un-fun that I am. My best mate tells me this will pass, and I have to listen to him. It’s all I have to hold on to.

Hospital Fun

My experience of being in the Royal Free hospital following an overdose.

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Theres not much fun about being in hospital, the exception being that this morning I got the see the Bristol Stool Chart in action.

Otherwise, it’s been a series of SNAFUs, FUBARs and other WWII based acronyms.

From my arrival at 6:45am A&E yesterday morning, my care has been nothing short of Bristol Stool.

Someone turned up at 8am and tried to introduce himself but wouldn’t be specific about why he was there. He was wearing a lanyard from another hospital so I assumed he was on a placement of some sort. He proceeded to sit at the entrance to my bay with his back to me all day. At no point did he mention I was on one-to-one observations (I was only aware of these happening on psychiatric wards) and when I was finally transferred to another ward I shook his hand to say goodbye only for him to say he was coming with me. He pulled up a chair within 50cms of the end of my bed, which felt like an uncomfortable invasion of my space.  I explained I was extremely tired (after a night of overdosing, like durr) and wanted to go to sleep, so would be pulling the curtain round.

No, I was not allowed to do that, he replied. I had to be visible to him at all times.

No way, I said disbelievingly. There was no was I going to sleep with a complete stranger peering over me, especially one I’d only exchanged three words with all day. And where were these “vital” one-to-one observations when he’d dallied off for his lunchbreak earlier on? (there was no replacement).

We continued in much the same vein for a few minutes with me closing the curtain, him opening the curtain, like a really crap game of hide and seek. Eventually I asked to speak to the Duty Psychiatrist. They sent me a Psychiatric Nurse. I asked again, could I see the Duty Psychiatrist. Eventually I got to speak to the duty team and explained that I thought it was completely reasonable to want some privacy from the rest of the ward to go to sleep. Appaz not folks, hospital is the place where you arrive depressed, beaten and exhausted, only to lie in a brightly lit room with a complete stranger staring at you. I believe the NHS could probably have a sideline in teaching the Chinese more elaborate forms of torture.

The Duty Psychiatrist never turned up with what I’d asked for, which was written justification for my denial of right to privacy and a copy of the “hospital policy” where this information was iterated. Instead I found that my carer had changed shift and I got to close my curtain. Result! Victory had been brought about not by application of common sense or our of respect for me as a patient, but by complete inertia on the part of one bank nurse handing over to another and not bothering to let them know I was meant to be on permanent observations.

It would have been a victory, except new Registered Mental Health Nurse didn’t know how to work my drip machine, so I when unplugged it to go to the loo (as I’d been shown to do) and it kept bleeping , she told me it was my fault for a) not holding my arm straight; b) moving and c) not pressing the override button (I did say I’d been told – quite sensibly I thought – not to touch the buttons) but this was the sage advice of the trained professional.

The not-sage outcome was that actually the machine wasn’t drip feeding me, and I’d spent two hours without my medication. Way to go CANDI, you’re really maintaining that reputation for excellence and quality of care!

Things I learned today:

Don’t expect to be treated with respect as a mental health patient;

Don’t expect to be provided with written hospital policies informing you of your rights upon request;

Don’t expect your medication to be administered correctly.

Sadly, my experience went from bad to worse, but thats a tale for another day.