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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A list of shits no longer given

If you read this blog, or even worse, have had the misfortune to meet me in the last few weeks, you’ll know that I am not in the best mood.

I have a washing machine of vitriol churning in my head and a blaze of anger what I formerly assumed was a cold, dead heart.

So I have made some resolutions. Here are some things that I have resolved to no longer do/ignore/allocate any of my precious thought time to.

  • Tits and nipples. We (very nearly) all have them. If you can see mine, and choose to sexualise them, that’s your sweet issue. I realised at the grand old age of 40 that I don’t, and have never needed a bra. The reason I wear a bra (I suspect like a lot of women) is to a) make my breasts a more desirable shape as deemed by decades of media imagery or b) to COVER MY NIPPLES. Why, I find myself wondering? Which imaginary deity deemed that visible nipples were somehow an invitation for unwanted sexual contact or the sign of the sexually promiscuous? If I can see a man’s nipples/moobs through his t-shirt my last thoughts are of sex, believe me. So rule one: fuck your views on my perfectly natural human body.

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  • Smiling at strangers on trains. I am a sociable bean, and also from Yorkshire, so my automatic response upon meeting someone’s eye is to smile at them. This is nice and I don’t want to stop doing it. But I was one the tube yesterday and looked up to catch a man letching at my aforementioned rack. I was literally halfway through my automatic smile when rational thought intervened and I realised that I was smiling at this man because I somehow felt like I owed his unwanted sexual attention a friendly response. So rule number two: from now on, stinkeye for letches. Speaking of letches…

 

  • …those guys who slide into your DMs at quarter to twelve on a Friday night. The kids are in bed, the wife has followed and they are sitting alone, deep into their collection of craft ale. The messages begin innocuously enough, perhaps with a tenuous link to a mutual friend or a shared interest. I used to wonder ‘why are you messaging me? I don’t know you’. But being a nice person, or at least a shadow of one, I would reply. I would engage, because that’s what I was brought up to do; be friendly and polite. The only difference here is this is not a civil exchange such as one you might have with the elderly lady or gent at the bus stop. This is a highly gendered phenomenon, because it relies upon two of the great pillars of patriarchy: men’s entitlement to women’s attention, and women’s obligation to grant them this. It took me a good few months of messaging back and forth with randoms before I saw the pattern emerge: the lateness of night, the alcohol, the fact that it was never, ever women getting in touch at 1am ‘just for a chat’. The crunch came for me when one of these Facebook buddies decided in his drunken state to send me a meme that amounted to ‘show us your tits’. I realised then that these guys wanted neither friendship nor sex, what they wanted was a bit of a diversion, some idle flirtation to bolster their sagging self images. I also realised I was gaining nothing from these transactions, and they were taking up a whole load of emotional energy.  So from then on, rule three: I don’t accept ‘chatty’ DMs from men anymore, instead just telling the sender that I’m happy to be Facebook friends but I don’t chat with people who I haven’t met in real life.

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  • Taking up space. I refuse to apologise for occupying my 68kg 160cms volume of space. Take a look at the picture above. the four women in the front row clasp their legs together, cramped into a small amount of space, while the seven men have spread, relaxed legs, occupying as much of their own sweet space as they wish. OK, its a picture of a load of Tories who by their very nature are bound to be a bunch of cunts, but the pattern is repeated everywhere. Theatres, trains, airplane seats. Rule four: without needlessly encroaching upon other’s space, I will take up as much as I need. If that leads to a battle of wills with the fella sitting next to me, so be it. I am more than capable of giving passive aggressive kneeing when required.

 

  • Rule five: I will not apologise for myself. My education (hard fought for – I got a first class degree but it took eleven years of interrupted study including dropping out of Cambridge to get there), skills, vocabulary and what my mate calls ‘grit and determination’ can often be perceived as a threat by people in authority. I was brought up to have an enquiring mind, which goes down like a lead balloon when you’re sitting in a psychiatric ward at 2am asking for the NHS policy on voluntary admissions before you sign anything. Frequently this has brought me to blows with medics who view this as a personal attack and as a result, become upset and defensive. Whilst it is absolutely not my wish to hurt or disrespect another human being, I’m resolute in my belief that professionals need to be impartial and open to questioning and, at times, criticism. It’s really not personal.

 

  • Rule six: I’ll try my best to give love, appreciation, support and credit where it’s due. In a world filled increasingly with dangerous bell ends, I will hold close those dear to me, thank them for their care, seek to make connections with other good people and show empathy and support to those people going through their own hell. I’ll use what little I have in the tank (mainly lying like a lump on the sofa writing blogs or going on Facebook) to support new artists and creatives, to challenge cuntiness, and to bring good people together. I will try.

 

  • I will pace myself. So instead of lying on the sofa feeling overwhelmed by the chores, I will do one thing each time I get up. So I go for a wee, and put a wash on. I water the plants while I boil the kettle. I am aiming for three chores a day, anything else is a bonus. The prospect of unpacking my suitcase from the crisis house is a faraway fantasy. Leaving the house alone still a long way off. But rule seven seems do-able at the moment, which is the best I can hope for.

 

If you have any suggestions for rules for living in this difficult world, or thoughts on mine, I’d love to hear them. I moderate all comments and will happily post critical comments but only if they’re constructive and non-abusive.

Dry your eyes, mate

I’m ill, which means I need to access mental health services, which in turn makes me more ill. Oh the sweet irony of NHS mental health care.

I write this in my GP’s waiting room having just had an encounter that was almost as unpleasant for the doctor as it was for me.

As ever, whenever I deal with authorities I find myself trapped in some kind of hideous Catch 22 in which the people with the most power have the least intellect.

I turned up for a routine appointment to review my mental health. I explained that things had got worse and please could I have some more diazepam. After a lecture from my somewhat-new-and-inexperienced GP on how addictive it was, I explained that I understood that but my choice was currently to take medication to control how I was feeling, or chuck myself under a bus. I am dealing with the lesser of two evils here.

I also asked for one of my prescriptions to be changed from three times daily to ‘as required’, as I’ve been instructed by the crisis house to which I am hoping to be admitted this afternoon that they can’t administer more medication than prescribed.

There followed the most ludicrous and cyclical conversation, in which the doctor repeatedly told me that she couldn’t give me any more tablets. I explained I did not want any more tablets, I had plenty. I wanted her to change the     prescription from TDS (three times daily) to PRN (as required). She couldn’t give me any more tablets, she repeated. I DON’T NEED ANY MORE TABLETS I repeated.

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No word of a lie, this conversation went round in circles at least four times before she informed me that my psychiatrist would have to agree to this, but she was too busy to contact him today. The crisis house would have to phone the surgery, speak to the duty officer, ask them to phone my psychiatrist (who, as a consultant, is not easy to get hold of at the best of times).

I expressed the view that this was not good patient care, and would likely leave me in a situation of extreme distress with no access to medication for a period of days until contact could be made with the appropriate people.

She refused to budge from this point, so, knowing that I would have to explain this situation to the assessment team at the crisis house, I asked to record her reiterating her position, and turned on my phone.

At this point she left the surgery and did not return. Instead, her senior colleague returned and informed me that she was very upset.

He asked me to stop recording and said he would end the consultation unless I did so, so I agreed I would do so provided he would give me a written account of our consultation to take away with me. On this basis, I quit the record.

He then agreed to contact my psychiatrist today and to phone me and let me know the outcome.

I thanked him. I explained that I was sorry that his colleague was upset but pointed out that I thought it showed skewed priorities that he was asking me to empathise with her.

I was a patient who had presented in the midst of a mental health crisis and has asked for a course of help that would prevent causing me further distress. When that was denied to me I asked for evidence because I knew that I would have to progress this battle with other authorities in the health trust. At no point did I raise my voice or be impolite; what I did do was give a frank account of being unlawfully detained by the trust last year and explained why I felt the need to cover myself from all angles in interaction with mental health services. The other crime I seemingly committed was of having an understanding of my rights and of prescribing guidelines on controlled substances.

 

What’s the difference between Ant McPartlin and a civilian? Rehab is not an option for most of us

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I was sorry to read today that TV presenter Ant MacPartlin was “going into rehab” after admitting a struggle with depression, alcohol misuse and addiction to prescription drugs. 

Although McPartlin is in no way my cup of TV tea, I understand that it must have been incredibly hard to have stayed at the top of his game for so many years in a business that delights binning those who have outlived their light entertainment shelf life. I’ve known enough people in the entertainment industry to know how hard they have to work to keep their heads above water.

I understand that McPartlin’s problems have partly arisen as a result of being left in chronic pain following knee surgery, and as a fellow pain sufferer I can see only too easily how this came about.

Dan Baldwin: Fragile - Private View

I suffered a herniated disc back in 2012, as a result of going running to try and control my bipolar disorder. The running was incredibly effective, but my spine was not in agreement andI ended up having to have surgery for a slipped disc. During this time I was placed on high-strength opiate painkillers, on top of my ordinary psychiatric medication, with the advice to “take them, whether you feel the need to or not” (this advice is based upon the reasonable assumption that if you wait until you are in pain, the muscles around the area will be in spasm and the pain will be worse, whereas if you take the painkillers regularly you are less likely to restrict your movement and cause further problems).

Great, I thought. No problem, I thought. 60mg of codeine per dose was easily enough to convince me of the doctor’s wisdom. After the first dose, in fact, I believed I’d never have any problems again. It wasn’t enough to completely kill my agonising pain, but it was certainly enough to help me not care that I was now bedridden.

I had my op. Post-operatively I was prescribed Tramadol on top of the co-codamol and three other painkillers I was taking. I used one of those old lady pill organisers to ensure I was taking my medication correctly and found I couldn’t shut the lid, so great was the number of tablets inside. I didn’t care. I found I didn’t care about much, until I realised it was a year later, I was two stone heavier and I hadn’t left the house for eighteen months.

By this point, I was a long, long way away from being able to enjoy any of the therapeutic effects of exercise on my mental health. I was terribly depressed. The codeine no longer had the same joyous effect, and so I’d drink to try and replicate the blissful state of blotto. When that didn’t work, I’d take extra co-codamol. I remember phoning NHS Direct (now 111) because I couldn’t breathe, and them advising me to sleep propped up on pillows. They didn’t ask the right questions to discover what I know now, which is that my breathing was suppressed as a result of overdosing on co-codamol and alcohol.

This unhappy state of affairs culminated with me being awoken from a drugged sleep one night by the police banging down the door. I’d told my friend online that I’d taken (as had become my custom every evening) about 20 co-codamol, as well as alcohol. Oh and I’d sliced up my arms for good measure.

I don’t know what Ant’s rock bottom was, but I’d hit mine.

But if there are parallels between our stories up to now, this is where they diverge.

Because the thing is, there is no “rehab” for those of us reliant upon the NHS. I spent a few days on a general NHS ward whilst the drip treated my damaged liver. I went on to spend the next six months being buffeted between home (where I could not cope), psychiatric hospital, where they kept on trying to discharge me because, although i was actively suicidal, I wasn’t mentally ill enough, and various short stay ‘crisis’ houses, which had very strict time limits of a week or so. There was no rehabilitation facility for someone who had become addicted to prescription drugs because they were prescribed those drugs by their GP. It was a matter of going home and sitting it out; or more realistically, going home and taking regular overdoses and being buffeted in and out of crisis care, which amounts to one visit every couple of days to check that the knives are hidden. Not “rehab” by a long chalk.

The Telegraph reported McPartlin to have said about his difficulties:

“I’ve spoken out because I think it’s important that people ask for help if they’re going through a rough time and get the proper treatment to help their recovery.”

I’m really pleased McPartlin has spoken out, but let’s be realistic about what this “proper treatment” amounts to for those of us not wealthy enough to afford The Priory. The NHS does not have these mythical rehab facilities. If we feel sorry for McPartlin, we should extend this pity to the average service user who is struggling through these problems alone.

 

Mental Health Activist Angst

As a mental health service user I’m really passionate about having a say in how my services are run. This isn’t entirely altruistic; I’ve been on the receiving end of enough piss-poor services when I’ve been ill that I have a vested interest in improving them, not just in the hope that others won’t have to bear the burden of dreadful care provision, but in the hope that things will be better next time I embark on the inevitable descent down the rabbit hole of insanity.

I’ve been part of an amazing project that has really made a difference to how staff on psychiatric wards treat (and think about) patients. It was a shining star of good practice where senior medics, NHS execs and service users all worked together with a shared aim of changing a poor organisational culture.

Unfortunately that jewel shone bright in what has otherwise been something of a dunghill of well-meaning but inept professionals with a professed “clarity of vision” but little clue about how to put it into practice for Joe and Joanne Bloggs.

Read on for insights into this glorious world…