I put a password on my last post because it contains personal medical information. If you’d like to read it, email me at iamjoannebloggs.com.
Back in March I decided to withdraw from my anti depressant. I’d been on it for around theee years; it no longer seemed to be elevating my mood and I am already on lots of other meds for pain/anxiety/minor ailments so thought it was time to prune away excess medication.
What followed was a period of five weeks of ‘good’ (but for me, ABSOLUTELYFUCKINAMAZINGWONDERFUL) health: normal functioning, I left the house every day, went to the gym, went to Machynlleth comedy festival. I let new people, wrote and started to plan the future
But after that time my mood started cycling rapidly. My anxiety returned. In order to cope with the chaos I self-harmed and became bulimic: both tactics I hadn’t resorted to for a few years. I cried about five times at day at adverts, the kindness of strangers, buzzfeed articles, and the general minutiae of life. I encountered terrifying hangovers, where my anxiety was so bad I would have chucked myself out of the window to make it stop.
After about ten weeks of this, including a stay in a crisis house, my mate said ‘I think things are worse now you’re off the anti depressant mate’. I reluctantly agreed and restarted it.
Since then, it’s like I’ve been dead inside. My anxiety and agoraphobia have returned with a vengeance; I don’t leave the house for weeks at a time and never without a carer. I’ve socially isolated myself as I can’t bear my friends to see me in this pathetic ungroomed, un-cared-for state.
I’ve gone from having an active, sparky brain, fizzing with ideas, writing thousands of words every day, to someone afraid of opening their computer.
So, it seems I have a choice between CRAZY BANANAS ROLLERCOASTER life that might well end in suicide or d e a d i n s i d e life propped up by Valium and codeine to get through the endless days.
What should I do?
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.
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.
Are you one of those folk who ‘don’t really understand’ mental health problems? Pull up a chair, my friend.
I 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.
I know I am currently suffering from hypomania. It’s not pleasant but one of the funnier effects is lack of inhibitions.
This manifested itself in the pub yesterday afternoon. I’d been trying to enjoy a quiet pint but it was marred by a group of about eight young men in suits, slick haircuts, reeking of Lynx Africa.
They were gathered around a slightly older fellow, all slicked back hair and pin striped shirt, who was ostentatiously holding court. In a loud voice, he was delivering a motivational speech to his acolytes, apparently about what it takes to become a ‘coach’ (of what, I do not know). It will take sacrifices, he said. Your girlfriend won’t understand why you spend so much time at work. Hell, if she doesn’t understand that this is the sacrifice you need to make to bring in the big bucks then maybe you should question if you even need a girlfriend holding you back?
You need to be hungry, he exhorted them (although I hope they weren’t that hungry because the portion of sweet potato fries I received was measly). You need to be prepared to eat, sleep and shit work, if you want the sweet sweet reward of dollar. On an on he went, while they gawped open mouthed at his increasingly ludicrous proclamations.
In the end I could take no more. I had to leave anyway, so as I passed them on my way out (clutching a bulging Primark bag, which I’m sure added to my air of gravitas) I interrupted the Alpha and addressed myself to the group.
“Excuse me, I’ve been listening to everything you’ve been saying from over there, as this gentleman’s voice is quite loud. I just need to let you know that he is talking absolute bollocks. I’m a coach myself (I’m not; I don’t know why I said that) and he – gesturing at the shirt – is an utter bellend. Have a nice evening”. And I sashayed from the pub.
Not really sure what it was all about, really. But if I’m going to go publicly and embarrassingly mental then walking up to knob heads and informing them they are talking shite seems quite a productive channel for my energies.
Recently, I was unfortunate enough to suffer a period of poor mental health. At my wit’s end, I went to my local Crisis House in North Camden.
If you’ve never been in this position, I can tell you I didn’t take the decision lightly. Crisis houses are not fun places to be, and I was scared about being away from my home, with my black fluffy cat and beautiful garden which both give me a lot of comfort.
But I was at the end of my tether.
Having made the decision to go, I was assessed by the crisis team and assessed as in need of a bed, but it was refused to me. Why? Because I take medication prescribed by a non-NHS doctor. That was the sole reason.
Having told me this, they were happy to watch a suicidal woman, who had recently made her will and worked out how to kill herself, walk away into the sunset.
I don’t believe what happened to me was right, fair or lawful. Here’s my complaint letter (some details redacted to preserve anonymity).
To whom it may concern
- Failure to Perform Assessment in Line with C&I Values
- Failure to Risk Assess in Line with C&I Policy
- Refusal of Access to NHS Services
I write regarding my experience yesterday, 8 April 2016, applying for a bed in North Camden Crisis House. I have several concerns about the experience that I will detail below.
I arrived at the crisis house following a period of several weeks of self harm (cutting), constant suicidal ideation, and making plans to hang myself by buying a rope and working out how to carry out this plan. On 28 March I had presented at A&E seeking an admission and was assessed by [doctor’s name], who was prepared to admit me to an acute inpatient ward or crisis house. However, after four hours in A&E I felt unable to sit any longer due to chronic pain and self-discharged, hoping I could use self-management strategies to recover at home.
Unfortunately my illness did not improve in the following days, culminating in my self-referral to the Crisis House. I do not feel my experience with the team was a positive one and I should like you to investigate the following issues.
I do not feel my assessment was carried out in the spirit of C&I “Being Open and Duty of Candour” policy (2015). This policy states:
- [Service users] will receive a warm welcome throughout the journey to recovery;
- They, their dignity and their privacy will always be respected;
- Their care will be founded on compassion and kindness;
- They will receive high quality, safe care from a highly trained team of professionals; · We work together as a team to ensure they feel involved and offer solutions and choices – ‘no decision about you, without you’;
- We are positive so they can feel hopeful and begin their journey of recovery knowing we will do our very best. (p.3).
I do not feel I was given a warm welcome during my assessment. The assessing questions were asked in a mechanical way, using jargon. For instance “what would you consider to be your stabilising factor?” – meaning, in layperson’s terms “what support systems/strategies do you have in place to stop you hurting yourself?”.
I appreciate that professionals have to ask a range of standard questions in their assessment but there are ways of doing this to make it feel like a personal, caring interview rather than being asked deeply upsetting questions such as “do you have any thoughts of suicide now” blankly and as if by rote.
I also felt that the initial assessor was judgemental regarding an antidepressant I take which is not on Camden’s formulary. When I told her the name of the drug she said “that’s expensive, isn’t it?, although I didn’t think this comment had any relevance to my informing her of my list of prescribed meds. She went on to say “we don’t prescribe that”, leading me to have to inform her of NICE guidelines on prescription of escitalopram in cases where the patient has had no response to citalopram, and to explain that the decision to give me the more expensive drug had been taken by my psychiatrist/psychologist at the Dartmouth Park Unit, who have overall responsibility for my care. She then asked how long ago had I been on citalopram, again a question which I don’t feel was relevant under the circumstances. I don’t expect to be given an unofficial medication review by a nurse assessing me for a crisis bed when I already have an established care coordinator and psychiatrist in place.
I gave the assessing nurse a full account of all the prescription medication I take, following which she asked me to go home and wait until she had spoken to the team.
I had already been told on the phone that if I passed the assessment I could be immediately admitted, so had brought an overnight suitcase with me. I explained that it would be difficult (not to mention expensive in taxis) for me to go home needlessly as I had been told I could wait at the unit. One of the most severe and exacerbating symptoms of my mental illness is that I struggle to leave the house alone, and so I did not feel that dismissively being told to “go home and wait for our call” was very kind, compassionate or considerate of my personal mental health needs. In fact I felt as if I was being treated as an object rather than a person in crisis with acute mental health needs.
I waited in reception and was shortly seen by a lady who introduced herself as the manager of my assessor. I apologise for the lack of names, but I was in a distressed state – I hope the names of the assessing staff are apparent from your notes.
This nurse asked about one of the prescription medicines I take – liraglutide – which I buy from an online clinic. The clinic is CQC registered and the medication is prescribed by a doctor. I buy it privately as I find it helps immensely with both my bulimia and alcohol consumption, both of which have been a problem for me during past periods of mental ill health.
I found the manner in which the nurse questioned me about this drug to be both patronising and offensive.
Having attended the North Camden Acute Day Unit in the past I had made them aware of my use of this drug and had taken heed of the fact that this was a drug they would not advise me to continue taking. I had been frank that my taking this drug was a calculated risk, and though there were possible side effects that could be detrimental to my mental health, I explained that I had felt much better since starting the drug. The fact that it is used off-licence (its primary use is for treating type 2 diabetes) is not of concern to me, as the majority of the drugs I have taken during my long treatment for mental illness – especially bipolar disorder – are used off-licence. Similarly, I think without exception, all my psychiatric medications have carried warning of side effects of mood swings, urge to self-harm, and suicidal thoughts.
My point is that although I understand my medical professionals warning me against this drug as it is largely an unknown quantity to them (I have never been provided with any explanatory evidence as to risk of harm, simply been told “we would not advise it”), I have taken a calculated risk to continue this drug as I find it helpful with some of my psychiatric symptoms. I should also point out that at 57kg and 160cms the NHS BMI calculator places me in the middle – upper of the “healthy weight” range with a BMI of 22.2 – so I am not displaying any symptoms of being underweight.
To return to the manner of the senior nurse, it is perhaps most illustrative if I recount the conversation to the best of my memory.
N: So you purchased this drug online? [little laugh] We wouldn’t allow it here.
J: It’s prescribed by a doctor
N: Where from?
J: An online clinic. The doctor reviews your information and issues the prescription.
N: But they wouldn’t have seen you. We wouldn’t allow that here. We don’t even allow over the counter drugs like paracetamol here.
J: But if someone needed to take paracetamol, it would be administered? I’m quite happy for you to hold the drug – it needs to be kept in a fridge anyway – and administer it.
N: We wouldn’t allow that in an inpatient setting
- Note: It’s my understanding that a crisis house is not an inpatient setting
J: Where is it in NHS policy that drugs obtained on private prescription are not allowed?
N: It’s a local policy…we do it case by case. Your boyfriend could take the drug home.
- Note – I have no idea of the risk of stopping this medication suddenly, but I do know that is generally not advised
J: The staff at the [Acute Day Unit] know I take this drug and have done for some months.
At this point the nurse went to consult with [doctor’s name], leaving me once more in the waiting room. By this point I was quite distraught.
As [doctor’s name] was not available, the nurse spoke to one of the doctors on duty in the ADU who confirmed that they were aware I take liraglutide but don’t advise it. On this basis, the nurse tells me that they will not offer me the vacant bed.
I have several issues with this stage of the proceedings. Firstly, I don’t feel it is in the spirit of C&I values: ‘no decision about you, without you’ – this decision was taken without regard for any rationale I may have for taking this medication. Rather than taking a legally prescribed drug from a licenced clinic I was made to feel that I was taking an illicit substance purchased from a street corner. I was not given any medical/clinical information as to why the drug was “not advised”.
A more serious concern I have about this decision was that I do not feel the risk assessment was taken in line with C&I policy, or that the outcome was safe.
My assessment at the Crisis House began with an evaluation of my current mental state. The Clinical Risk Assessment and Management Policy Section 8 (p.16) states:
It is important that teams give careful consideration to managing the risk behaviours identified during the assessment. The risk management plan (which should be fully reflected in the care plan) should include a summary of all risks identified, formulations of situations in which identified risks may occur, and actions to be taken by practitioners and the service user in response to a crisis. The risk management plan should include:
- Management of the risk of suicide/self-harm
- Management of the risk of harm to other people
- Management of the risk of severe neglect
- Management of the risk of harm from others, historical and current.
Following my initial assessment it was clear that I had suicidal thoughts and plans, as well as plans to self-harm, and these factors presented a significant risk to my wellbeing.
However, I was denied access to a crisis bed on the basis on an unquantified risk, namely a privately prescribed drug. I feel this is counter to Section 9 (pp.17-18) of the same policy that states a commitment to positive risk management (emphasis added).
Positive risk management as part of a carefully constructed plan is a required competence for all mental health practitioners. Positive risk management includes:
- working with the service user to identify what is likely to work;
- paying attention to the views of carers and others around the service user when deciding a plan of action;
- weighing up the potential benefits and harms of choosing one action over another;
- being willing to take a decision that involves an element of risk because the potential positive benefits outweigh the risk;
- being clear to all involved about the potential benefits and the potential risks;
- developing plans and actions that support the positive potentials and priorities stated by the service user, and minimise the risks to the service user or others;
- ensuring that the service user, carer and others who might be affected are fully informed of the decision, the reasons for it and the associated plans;
- using available resources and support to achieve a balance between a focus on achieving the desired outcomes and minimising the potential harmful outcome.
Put simply, I do not feel that the assessing nurse made an adequate risk assessment of the risk to my personal safety, given my precarious mental state, versus the controlled administration of a privately prescribed licenced medication. I feel that refusing me access to a Crisis Bed placed me at significant risk, and I should like this decision to be formally investigated.
This brings me to my final point – being denied access to NHS services. I feel I was denied access to NHS services solely on the basis of taking a privately prescribed drug. The comments made by the senior nurse all suggested that the clinic where I obtained the drug was not a “real” clinic and because the doctor had not seen me in person it could not be a safe or valid assessment. These judgements were made without knowing the details of the prescriber, the official bodies they were registered with or how I was assessed for the drug. Fundamentally, I feel a value judgement was made because I had accessed online private healthcare, and on that basis, NHS services were denied to me.
I believe this to be in direct contravention of the NHS Constitution, Section 3a (p.23)
“You have the right to access NHS services. You will not be refused access on unreasonable grounds”
and specifically the clause
“Access to NHS services is not denied in situations where patients pay for additional private care separately”.
I would like these concerns investigating as a matter of urgency, and with regard to the fact that I remain in a fragile mental state.
I’m sitting, for the millionth time in a thousand years, in the afternoon, in a pub, on my own.
I’m almost certain I’m the only woman who drinks on her own in pubs at any time of day, let alone before the sun’s over the yardarm, but my personal disregard for both male privilege and convention has meant that I’ve never really cared about breaching this particular social norm.
The thing that gets me is the looks. Not from other groups, because they’re there with their mates and aren’t really that arsed about what other people are up to. No, it’s the looks from the hardened bar-sitters that gets me. Their features thickened with drink, and their age, outfit and demeanour always entirely inappropriate to the pubs’ aspirational “edgy” hipster vibe. They come in because they’ve always come in, and no amount of scotched eggs and slate plates is going to dislodge them.
They sit at the bar so they can drink alone and keep up the pretence of sociability by chatting to the barmaid or (less enthusiastically) barman.
Me tipping up and opting to get pissed alone in the corner whilst catching up with Facebook, is undoubtedly daunting to this dying breed. Except I don’t think they’re a breed that will ever die. While ever alcohol exists, you’ll find the hardened drinkers, escaping from reality on a fluffy pillow of lager.
And maybe one of these days, one of the hardened bar-sitters will be me.
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…