NHS cogwheels: why should I have to grease them?

There are oodles of definitions of person-centred, or patient-centred, care – sometimes it can feel like people/organisations reinvent what they mean by these terms every time they start a new project or initiative. I’ll tell you what I mean by it:

That the person receiving the care is the main priority of staff and services. That people delivering different elements of that package of care operate as team, even if they work in different locations and for different employers, making sure it all hangs together for the benefit of the patient.

I’ll tell you what I don’t mean by it:

That the person receiving the treatment strives to make themselves the centre of their care package by identifying gaps in communication within that care package and attempting to plug them.

I’m angry today because that’s what I’ve been having to do, not just self-advocate but purely and simply carrying vital information between people/services because it has not been delivered to them in any other way. There is a clear chain of command in making and communicating the clinical decisions affecting me, but that’s completely fallen by the wayside. Yes, it’s happened to me before. Yes, it happens to other people all the time. But I’m angry about it happening here and now, because I’m having to do this during a period research shows is a highly risky time for recent psychiatric inpatients. Failing to provide correct care in the two weeks post-discharge can cost lives.

Let’s roll it back to when I was in hospital. We had a CPA review on 4th March, attended by the ward consultant, junior doctors, the ward pharmacist, and Tom. A clear plan was agreed on.

  • Start reducing the quetiapine from 700mg and eventually come off it, so drop to 600mg as of that evening and keep reducing by 100mg weekly
  • Continue until 300mg, hold there until I’ve been on holiday
  • Continue the reduction when I get back from holiday
  • Introduce aripiprozole at this point and cross taper

There. That wasn’t so hard. It took me about a minute to type. And yet someone (junior doctor who was taking the notes, perhaps) omitted to put that concise little plan on the system. All it says is: “Plan to switch from quetiapine to aripiprozole.” That’s it. No doses. No timescales.

That’s all there is.

I’m going to add a little bit in here to supplement the original post. I’ve had a couple of responses on Twitter that suggest people think what is going on here is that services have used “patient empowerment” to shift responsibility onto me, that I was put on some kind of care pathway and then left to make it work.


Nope, nope, nope. This is not about following some badly co-produced system. There was no understanding or expectation that I should take an part in the plan’s delivery. Following the CPA meeting I wasn’t supposed  to be doing anything other than take the meds prescribed to implement the plan. I have simply picked up the pieces after realising that the ball had just been – dropped. Thoroughly dropped. From here it looks like no staff member would apparently have noticed had I not stood up and made a fuss.

I knew something was wrong on the day that I was discharged, exactly a week after the CPA meeting. The dossette boxes I was given to take away contained 600mg of quetiapine, the dose I’d been on for the past week in hospital, and didn’t take into account the agreed dose decrease to 500mg that evening. Over the weekend I ended up taking one of the 300g pills they’d given then chopping a 400mg from in my old community dossette boxes in half to make the agreed 500mg. I know you’re not supposed to do that with film coated extended release tablets but no one had supplied me with the correct dose.

Last week I had one phone conversation and three face to face meetings with Home Treatment Team nurses. Every single one of them confirmed that there was nothing on the system and made a note of what I understood the plan to be, but still no clear instruction appeared. Frustrated, I wondered if my own consultant could help. I sent a long email again explaining my understanding of the plan, stressing that nothing was on the system, and informing him exactly what medication I had left at my disposal. I asked whether he could liaise with the ward consultant to get this sorted as we were now 10 days after the plan should have been recorded. He responded to say he’d kept in touch with the ward consultant and knew of the plan.

So two consultants knew the plan, yet neither of them jotted that brief note. Helpful.

As a result I have been (metaphorically) carrying the plan with me and laying it out to every healthcare professional I’ve seen. There is no reason to disbelieve me; after all, I have been asking for less medication, not more. The HTT nurses have all agreed that it is silly to keep being given drugs that I do not need, yet but the end of last week I had 27 300mg pills. As it happens, I am not suicidal in this risky time period. But pharmacy don’t know that and now I essentially have a stockpile caused by professionals, and had I accepted a further incorrect dossette box last week I would have received a further 14.

This week the dose was supposed to be 400mg. When I pulled everything I had together I actually had a few 400mgs from my old boxes floating around, so all I needed to make up the correct doses for rest of this week was either four more 400mg tablets or four 100gm tablets to combine with 300mg. Nothing more.

That ought not to have been a problem. On the hospital drug chart I was written up for PRN (as required) 50mg and 100mg quetiapine, so the Monday and Tuesday nurses agreed with me that it was sensible to get me those low dose meds.

But hospital pharmacy appears to be very blinkered. No matter how many times the HTT nurses have said, “Please just give us the PRN 100mg tablets she’s already prescribed” the pharmacists are obsessed with what’s on the drug chart from the week before discharge. I would’ve thought that given the number of times nurses have contacted them to ask for something different they just might have called the ward pharmacist to discuss, or at least shown some curiosity about the repeated requests and tried to speak to a doctor.

But apparently not. Yesterday the HTT nurse was pleased to be able to hand over some quetiapine extended release 50mg tablets. I was expecting to be given a short PRN course, 10 tablets maybe, or 14 max. I didn’t really even need that much. Only when we looked at the label there were 84 pills and I was to take 12 at night. And then the penny dropped: in the mind of pharmacy, I must take 600mg, no matter how many pills this requires.

So here we are approaching three weeks since the meeting. The Bank Holidays looming giving me less time to sort things out. I thought I’d better go and see a GP today and find out what, if anything, primary care had been told. I wasn’t particularly hopeful and indeed they had not even been notified of my discharge. They had no record of my drugs, although my copy of the medication summary stated prescribing would now be handed over to the GP. They had no record of the lamotrigine increase. And certainly no record of any change of antipsychotic, the summary – which I took in with me, which they had never been sent – of course stubbornly sticking to a daily 600mg of quetiapine.

The GP seems on it. She took a copy of the summary document, made sure she had the right phone number for HTT, and promised to get all my other drugs ready in a dossette box ready for Thursday. Essentially she is having to trust me completely on the quetiapine front and as she said to me, “It’s lucky that you’re doing well, you simply wouldn’t have been able to do all this if you were still poorly.”

Luck. Yes. And it should never be down to luck. My job is to receive care, not to have attempt to integrate and control it. Quite frankly by this point I feel that I should bill the Trust for the time and energy required to achieve so little and I am considering a formal complaint. I have building rage against the NHS machine, whose cogs don’t fit together properly, because I’m tired of trying to grease the wheels.
















About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards
This entry was posted in Bipolar, Crisis care, GP, Hospital, Inpatient care, Medication, NHS services, Primary care, Psychiatry, Self-management, Treatment planning, Uncategorized and tagged , , , , , , , , , . Bookmark the permalink.

12 Responses to NHS cogwheels: why should I have to grease them?

  1. TQ says:

    Awful situation
    I wish it was unusual

    This is a reportable incident as could easily lead to harm.
    Maybe one of the htt nurses could fill out an incident report on datix system
    It should not be for you to sort out.
    Perhaps a datix report would enable all the professionals involved to look at improving how they work.

    • I agree. The more I think about it the more I think about possible bad outcomes and that I need to report it. The nurses have tried so hard but just come up against brick walls.

      • The Millers Tale says:

        Absolutely agree that an incident report is the way to go, possibly backed up by a grievance or complaint. At least then, this cock-up formally exists on the *system*…

  2. Pingback: NHS cogwheels: why should I have to grease them? | Through My Eyes

  3. ecteedoff says:

    well, i’m angry just reading this so i can’t imagine how frustrated/disappointed/angry you must be. i understand we have to advocate for ourselves but this is just dangerous medicine. i’m so sorry you have to deal with this. it’s truly unacceptable and the worst is, from what i am gathering, because it’s public service, you can’t exactly complain to management. i’m proud that you are still working on it. you haven’t just said, fuck it, and let it go. i know it doesn’t make it any fairer or suck any less but it does show a strength in you that is pretty fucking cool. how terribly annoying all the same.

    • I agree, this *is* dangerous medicine. The very least worst outcome of not being able to self-advocate would be to be just stuck on 600mg unless and until another doctor says otherwise – when the patient has said clearly that they want to come off the drug and that has ben agreed with a consultant psychiatrist. Some people in this situation would end up in A&E after an OD. As always, it’s impossible not to think about people who don’t have the advantages and privilege that I do and simply *can’t* self-advocate. This is why I probably should put in a formal complaint.

  4. mm172001 says:

    I live in the United States and when you go inpatient you see someone different than your regular psychiatrist and things get messed around all the time and then throw in pharmacies and nurses. It’s frustrating but good for you with keeping the pressure on them to do the original, sometimes I just give up.

  5. Kit Reynolds says:

    Bet that felt good writing all that down, exercising your monkey in the words of Prof Steve Peters and hist ‘The Chimp Paradox’ box.

    Do make the effort to put in a concise formal complaint so that staff learn, and people are pulled up on their poor performance.

    The peer support group I’m in have jokingly said the same, that to get the best care you need to be sane, or have friends and relations to advocate. I’m seen it first hand in my family both ways.

    Good luck for Thursday.

  6. mercyjm says:

    I am so sorry this is happening to you, please do complain.
    I know you shouldn’t have to, but you are articulate and able to put things down in writing coherently. It may help others in the future who can’t? From my own perspective, I have had to keep asking for written instructions from my GP, after spending some time explaining I have no concentration and a patchy memory. He still only notes half the story (like reduce one prescription by x mg over x days, leaving me wondering about the other one?). What you are writing and thinking is really worthwhile for those who don’t or can’t. Thank you.

  7. Ian Watson says:

    This caught my attention as I am without my heavy dose of Venlafaxine since thursday and it feels like my head is coming off at the hinges and all due to an ordering mix up and emergency services down here in Dorset “don’t do antidepressants” which means I have to spend 5-6 days going cold turkey on a very serious medication.

    As a former nurse myself, trust me, complaints really don’t do much other than bring out the jobsworths and the bloody minded in staff who after getting a very soft carpeting are not going to bother to do the half baked job they did before and it will make matters worse unless you can get the complaint to come from a consultant or a GP who have the immunity and the clout.

    I am in a long term depressive episode why in plain speak is a psychosis level of depression and have been trapped in it for many years and I am finding the Venlafaxine isn’t helping at all even if I do have it, it did help in the first couple years since my collapse but it slowly became more and more impotent and I am trying to find alternatives as my psychiatrist is suggesting if the Venlafaxine fails then I will have to go onto the next tier suggesting Haloperidol which is very worrying as I have seen the effects of those drugs on patients first hand.

    I was inspired by this blog to start my own fledgeling one but its a bit grim and dark and not for the faint hearted but do take a look and open always to anything, anything in suggestions on managing what has become a permanent nightmare: http://allpainnogain.weebly.com/

    • Hi Ian, I’m interested why they would go straight for Haloperidol when there are so many other, newer APs available? So sorry you’ve been so unwell for so long and that the V isn’t working, I had absolutely *awful* withdrawal from it, by far the worst of any medication I have come off. How nice to be an inspiration, I hope you find blogging as cathartic as I do x

  8. LucyG says:

    I am so very disappointed as to what has happened to you. It is such an education for those of us to know how you have got on but devastating to learn of what you have been through. My GP always seems to be so disinterested when I have explained to her how I am feeling on the medication I take. She never recommends change. I have been on Depacote and Venlafaxine for over ten years and I have got to the point that it is better the devil you know than to change my medication. However, I still have depressive episodes where I have serious suicidal thoughts and if it wasn’t for the loving care of my immediate family I wouldn’t be here.
    I so want you to complain and speak to whoever needs to know about your situation. You are so articulate with words and being a bipolar sufferer I rely on you to give us the insight into what has happened to you recently. So many of us are disregarded by the medical profession and are not taken seriously. I haven’t been referred to any mental health care where I live and I have never spoken to a mental health nurse. I would love to be able to speak with someone who understands. This is why your blog is so very important and such a massive help to keep going forward.
    All the very best Charlotte and I personally cannot thank you enough for your excellent and informative blog. Sending you much love and please stay strong because you are amazing.

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s