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. ūüėČ

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 trust,¬†showing 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 Рshe 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‚Äôt live up to our values, let us know ‚Äď 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:¬† ‚ÄúMy name is ‚Ķ , My role is ‚Ķ , May I help you?‚ÄĚ 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 ‚ÄėChanging Lives‚Äô.

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Diagnose and Treat…or Discipline and Punish?¬†

After just a week I decided to leave the recovery house. I’m not better since my admission; I’m worse, but I fear that being in the house was one of the factors in my deterioration.

When I was studying towards my PhD I became acquainted with a chap called Foucault, who had a lot to say about power and its role in modern society. By ‘power’ I’m not referring to the copper-plated buffoons in Westminster, I’m talking about the subtle mechanisms of power that make you lower your voice while visiting a church, or refer to your GP as Dr Smith whilst she calls you by your first name.¬†

Mental health treatment is a seething morass of such displays of power. To me, each transaction seems to be test in which the person in authority seeks to assert their power. You will receive treatment, but only if you’re humble.¬†

In crisis and require some diazepam? Turn up to the surgery, head bowed, in jogging bottoms and makeupless (for god’s sake don’t wear lipstick as this is a clinical indicator YOU ARE FINE). Utter your request in hushed tones, explaining you are desperate and you don’t know what will really help. It’s touch and go, but the diazepam genie may just grant your wish. Don’t under any circumstances be articulate. Don’t make your request calmly and confidently. For pity’s sake don’t point out that your consultant psychiatrist (who outranks them in their tinpot kingdom) has left instructions on your notes for you to be given diazepam in such circumstances. Because this is an affront to the power of your GP, and as a result you will be punished by them failing to find the letter supposedly held electronically on your patient records, a claim that they will need to speak to your psychiatrist directly and other such complicating factors. You’ll get your 5mg diazepam, but only after much anguish and a possible invocation of the Human Rights Act.

Such assertions of power – in fact lets call them what they are, micro-aggressions – were no less in evidence when I checked into Drayton Park, the crisis house in my London borough. If you’re not aware – crisis (sometimes optimistically called ‘recovery’) houses are places for people who would otherwise be in psychiatric hospital. I have been in Drayton Park before, and although it was not without its frustrations I found it to be a broadly positive experience. Having said this, I was really, really¬†reluctant to relinquish my liberty and go back there. By the time I referred myself, I was very ill indeed.

I asked my best friend to accompany me to the assessment, partly because my trust in mental health services to treat me fairly and with respect has been irreparably damaged after previous instances outlined elsewhere in this blog, and partly because I’m not good at showing my mental distress. Apart from a very tiny number of occasions when I’ve fully flipped, normally the anguish and turmoil is buried deep inside. I can explain it, by god I can intellectualise it, but I just can’t bloomin’ show it.

Seemingly this makes me a less credible candidate for crisis care, because following my assessment when I was offered a place, I was told that their decision to admit me was borderline because I ‘clearly found it difficult to show my feelings’ as if this somehow makes me less ill than someone running round naked screaming. It’s as if the concept of being high-functioning mentally ill has yet to reach Islington.

I was assigned a wonderful and highly-skilled worker, who unlike me had actually managed to complete her PhD; in a similar field to my own. As well as discussing my health problems and possible solutions, she also sympathised with my feeling of being lost in the mental healthcare system. Despite having a dual diagnosis of Emotionally Unstable Personality Disorder and Bipolar Affective Disorder I’m not deemed ill enough for continuing support, but the drop-in type services which are being offered to me as an alternative are in no way suitable for my needs, because they focus on stuff I’ve covered comprehensively over the years: sleep hygiene, exercise, basic CBT and mindfulness.

Sadly my excellent worker was part time, so on her days off I was assigned an endless stream of other workers with whom I was obliged to have a one to one meeting with each shift. During the week I barely saw the same person twice. The team at Drayton are kind and committed but I found discussing how crap I was feeling depressing rather than helpful, and I dreaded the twice-daily meets. Often, because of my propensity to put on a brave face, I found myself smiling and making small talk in order to just tick the box of attending the session.

However, it was the regime of rules and surveillance that really made my stay untenable. I couldn’t bear the constant scrutiny and invasion of privacy. Strangers coming into your bedroom at midnight to (incorrectly) tell you you’d not taken your medication; being referred to as ‘non-compliant’ for choosing not to take a painkiller if I’m not in pain.¬†

I didn’t have the freedom to break in half a 5mg tablet of diazepam and take the other half if/when I needed it. It was take the whole pill and feel like a zombie or take nothing at all, and then risk having my script reduced because I wasn’t using it ‘as prescribed’. I’m used to managing my own medication to cope with both my moods and my chronic pain and having this taken away from me made both conditions worse since the rigid system allowed no room for me to alter my levels of meds to meet my needs (despite my psychiatrist being fully supportive of this approach).¬†

Because of the emphasis upon staff contact, I couldn’t relax, write or take a nap (which I sometimes need to do as my pain meds sedate me) because staff would come and knock on the door every couple of hours. I was constantly on a high state of alert knowing I could soon be interrupted.

One of my workers told me I shouldn’t sit alone in my bedroom, and when I said I didn’t feel well enough to be around other unwell people I was told to ‘sit in the cr√®che and watch TV’. I don’t watch much TV at home (OK, OK, apart from Ramsay’s Kitchen Nightmares), I’m certainly not going to sit in a playroom and begin now. If anything that’s more bonkers than the situation I’ve just gotten out of.¬†

Don’t get me wrong, I understand that every one of the rules I’ve complained about above is there for a reason, and the fact remains that Drayton Park remains a wonderful haven that provides help to a lot of people. But one of their core claims is to treat residents as individuals, and this just didn’t seem apparent in my case.

It also transpired that Drayton Park, despite its progressive ideology, is not immune to micro-agressions of power. I told my allocated worker I was leaving, explaining that it was nothing that the house itself had done but that I felt it wasn’t helping me. She was very regretful and kind, and said that a senior member of staff would want to come and discuss my decision with me; I assumed to get some feedback on my leaving and risk assess my departure.

However, in the twenty-five minutes I sat by reception waiting for my medication to be returned to me, no-one spoke to me. One of my key workers walked past me with no words, no eye contact, despite me sitting surrounded by my bags. By having the temerity to make my own decisions, it was clear they weren’t going to pay me the respect of wishing me well or even saying goodbye. Neither of the managers came out to see me, despite me being sat on the other side of their glass panelled office. I gained the strong impression that if I was going to make my own decisions, they weren’t going to bother with me. My kindly worker came to return my medication to me and I was outta there, in more of a mess than when I’d entered the week before.

Something of a Car Crash

A mental health patient explains the frustrations of trying to convince doctors that her illness is biological, rather than caused by a bad night’s sleep, a row with her boyfriend or her menstrual cycle.

The other day I bought a new car. It was a lovely car, but it had a design fault, quite a serious one. Whilst driving along a straight piece of newly-tarmaced road one day, the brakes failed, causing a nasty accident (no onlookers were hurt).

I took the car to a mechanic who confirmed that the brakes were faulty. However, In the weeks following the accident I had to have a series of conversations with the police, safety experts and insurance specialists who were investigating the accident.

The conversations could be summarised like this:

Official: So madam, what do you think caused the accident?

Me: The brakes failed. I have a comprehensive statement from a senior mechanic, confirming that brake failure was the cause.

Official: Yes, but let’s look into this in more detail. Was there perhaps a pothole in the road?

Me: No. The road was newly tarmaced, and in any case, it was the brakes that failed.

Official: I see there are large trees in the area. Leaf build up from overhanging branches can be an attributing factor for car accidents.

Me: It’s the middle of summer, there is no leaf drop. And I think I mentioned, it was the brak-

Official: (interrupting) ¬†It’s currently Ramandan. Fatigue caused by fasting can cause one to lose concentration on the roads…

Me: I’m an atheist. And so is my husband, who was driving the car at the time of the accident.

Official: And how is your relationship with your husband?

Me: IT WAS THE F**KING BRAKES

This is what it’s like trying to explain to health professionals that your mental illness has a biological, rather than a psycho-social, cause.

For the record, I have a dual diagnosis of Bipolar Disorder, which is mainly considered a physical/biological illness, and Borderline Personality Disorder, which is frequently considered to be caused by, and influenced by potholes ooops I mean environmental or social factors. In my experience there is a massive reluctance on the part of the NHS mental healthcare side to accept that sometimes mental illness isn’t attributable to social factors, and is just caused by my brain’s fucked up chemistry.

  1. This website is helpful if you want to know more

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No doubt others will have different experiences.

Catch of the Day

Likely to be a regular feature while I’m in acute mental health services.

Today it went something like this.

Back in the day, when I first developed my spinal problems, I was prescribed large numbers of prescription strength co-codamol. They were handed out in boxes of 100, on repeat prescription, for years, as I detailed in this earlier blog .

Given that the much weaker over-the-counter version of th drug carries a warning that more than three days use may cause addiction, unsurprisingly I became addicted.

Since then I have tried to keep off the strong stuff but still take the over the counter strength daily for the pain.

Because of a history of overdosing, for a long time my GP would only prescribe weekly, so I wouldn’t have a dangerous amount of medication sitting around. It was a hassle but I could see their logic, even thought the combined strength of the seven medications I was on would probably have killed me, even with a week’s supply.

I take eight co-codamol per day, which, maths fans, adds up to 56 tablets.

Eventually my mental health was stable enough that I was returned to monthly scripts, and I received four weeks of everything. Except my co-codamol, which was still given as a box of 56. When I queried this with the GP she said that due to my history they would not prescribe more than one week’s worth for the entire month. I asked for post dated prescriptions and this was refused. This meant that despite paying for my medication on a pre-payment certificate, I had to go to a pharmacy every three days to buy more co-codamol over the counter (and hear the pharmacists warning that ‘more than three days use causes addiction’. You don’t say).

Now I’m in the crisis house, and they will only administer medication that has been prescribed (you’re not allowed to hold your own. In fact I had to smuggle some multivits inside my vagina but that’s another story).

So the GP will not prescribe the correct amount (the fact that I need this drug to treat chronic pain is not in dispute) and the crisis house will not administer over-the-counter co-codamol ‘for more than three days as it says on the packet that they cause addiction’.

So far I have explained this situation to:

The manager who assessed me for the crisis house

The pharmacist at the crisis house who reviewed my medication

The worker who admitted me to the crisis house

and finally, this morning, the member of staff at the crisis house who, when I asked her for my lunchtime meds, disbelieved my concise summary of the situation.

No punchline today. In fact I’m going to go and grovel for one of my Valium and see what difficulties that throws up.

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.