You could not make this stuff up!

Gabrielle tearing her hair out

The last  few days can be viewed as a total disaster or as a bit of a joke. It depends on how I am able to think and feel about it.

I leave you to judge for yourself.

  • Last Saturday morning, I went into crisis mode. Put simply, that means that I had come come to the end of my coping capacity, had exhausted all my energy, and had reached the edge of my own precipice.  When I get to that point, ending the agony is the one thought that takes over completely and I become a danger to myself.
  • Now, it's not as if I am new to the local psychiatric services. When I visit Corner House,  the local psychiatric support unit (that's a joke for a start), or when I visit Penn hospital (the local psychiatric hospital), I am greeted by my first name. I am what pub landlords would call 'a regular'. I am also well-liked because I have never been abusive or aggressive towards any member of the staff - even in crisis mode, I make huge efforts not to allow that to happen.
  • You would therefore be forgiven to assume that, if and when I suddenly take a turn for the worst and I become a danger to myself, all I have to do is get myself to Penn hospital to see the psychiatrist on duty for medical assistance. You'd be totally wrong, because that's not the way the system works.
  • This is what I had to do on Saturday - correction: this is what my husband had to do because in crisis mode I am unable to function properly.
  1. 10.30am:  Call GP on Call - give a detailed explanation of my situation to a non-specialist who doesn't understand what my husband is talking about. Told to wait for a call back.
  2. 11.30am:  Get a call back from another person (didn't sound like a doctor) and answer a load of questions that are obviously tick boxes on a form. Spell out all the medications I have already taken using the 'Alpha Foxtrot' alphabet because that person has obviously no knowledge whatsoever of any of the medications in question. Doesn't even know what ECT is.
  3. 12.30 pm: Get a call from a doctor who seems really clued up because he understands what my husband is telling him and asks all relevant questions. Told to wait for another call.
  4. 2.00pm: Get another call back. Told to go to the Phoenix Centre, a medical triage centre. I am so ill, I cannot even dress myself so I go to a packed waiting room in my dressing gown and slippers. Have great difficulty leaving the house and walking into such a crowded area. Utterly distressing and humiliating experience.
  5. 2.30pm: See triage doctor. Asked a lot of 'tick boxes questions' again and asked whether I am willing to go to Penn Hospital to see a psychiatrist - if not willing (all I've been wanting all day is to see a doctor at Penn Hospital!), will be sectioned.  Then, told to wait for psychiatric doctor on duty at Penn to call triage doctor back.  Sent back into crowded waiting room.
  6. 3.20pm: Called back by triage doctor and told to go back home to wait for Penn psychiatrist to call.
  7. 5.15pm: Penn psychiatrist calls and asks whether I can get to Penn Hospital there and then.
  8. 5.45pm: Finally see psychiatrist on duty at Penn Hospital (he recognises me from the ECT Clinic!) and Senior Duty Nurse. By then, I am in a seriously distressed state. Finally given medication to take the edge off symptoms and to make it easier for me to 'hold' the crisis until I get an emergency appointment with my own consultant psychiatrist. Told appointment is guaranteed within 48 hours so only given enough tablets to last for those two days, for my own protection (as if they could not give the tablets to my husband who is my official carer), so each tablet ends up costing me over a pound!

A journey that  could have taken me 10 minutes in a car to get the medication I needed from Penn hospital took over 7 hours, 7 long painful distressing hours, necessitated numerous phone calls and two car trips. What would have I done if my husband had not be there for me?!?

I had a much more comfortable Sunday and Monday, thanks to the 'holding' medication. Tuesday, no news of my emergency appointment so have to chase it up and am told to report to Corner House at 11.00am on Wednesday morning to see my consultant. By then, I have run out of medication so I am starting to feel very ill again. Never the less, get myself to Corner House, on time. When I get there, I am told a mistake has been made - my consultant isn't there. I am already highly agitated because bi-polar flips destructive impulses backwards and forwards, from 'within' towards oneself to 'without' towards the outside world, so walk out of the place because I am genuinely afraid to blow and hurt somebody.

My husband then calls Corner House and I am referred to my GP to get a top up of the medication I need to help me over the next two days, whilst waiting for the 'emergency' appointment with my consultant. My GP surgery tells my husband I can collect my emergency prescription after 1.00pm.  When I get there at 1.30pm, my GP has left without signing my prescription!!!  I am then sent back to Corner House who then issues me with an emergency prescription. Why could they not have done that straight away, especially since the appointment mistake was their own **** up!!!

The system let me down spectacularly and very dangerously. What happens to the poor sods who have nobody to support them through this mess? I find the whole thing totally unacceptable, not only because of what it did to me but also because of what it did to my husband.

I have to say that I got numerous apologies, and that's nice, BUT apologies don't keep a seriously ill patient safe and do absolutely sod all to support the patient's family at the time where they need it the most. 

I called it a joke but to call it a farce would be more appropriate. And a dangerous farce at that....

PS:  Eventually saw my consultant on Wednesday morning and was prescribed a new 'cocktail' treatment, subject to blood test results. He promised to come back to me by the middle of next week for final decision. Let's see what happens....

What the system expects you to cope with

A very witty male member of my family (I will keep his identity hidden to respect his privacy) was angered and disgusted by what I have described in my blog entry. After he had finished expressing his anger and disgust, he said something that made me laugh to tears. Because laughter is such a precious gift in my circumstance, I want to share his humour with you. This is what he said: "For God's sake! What the system expects you to cope with is appalling: even a healthy person after an eight hour sleep, a blow job, and a baloney sandwich could not put up with that!!!". Just writing it is making me laugh again. Thank God for the wonderful men in my family and for the gift of laughter :0).

The Power of One

In the middle of all that mental health system madness (and I am supposed to be the crazy one!), three women made a big difference.  I will keep their identity hidden to respect their privacy but they know who they are: M, J, and G.  All three are IN the system but they are not OF the system. None of them could make a difference to the way the system operates but all of them made a difference to me: they CARED.  Sometimes, when we feel overwhelmed by the sheer size of a human problem, it's easy for us to forget that ONE human being caring for another human being can have a huge impact. Let's pay hommage to M, J and G by never forgetting that all of us have The Power of One.

Incredible but absolutely true!

This morning at Penn Hospital, I found out quite by chance, that my consultant psychiatrist has retired since I saw him two weeks ago (remember the screwed up 'emergency' appointment?). Officially, no other consultant has been named as his replacement so nobody is available to take over my care and authorise the start of the new 'drug cocktail' treatment my now retired consultant prescribed for me when I last saw him. I have waited two weeks (I was originally told 3 to 4 days) for blood results that finally became available to me this morning because one caring individual (another wonderful J) within the psychiatric system busted a gut to get hold of them for me, and I am still suffering greatly whilst waiting for another caring individual in the system (the ever wonderful M again) to bust her gut to get my treatment authorised ASAP. They call this a psychiatric CARE system?!?

You are amazing

Dear Gabrielle, I cannot imagine how you were able to write so lucidly about what happened to you on that particular Saturday, for it must have felt unspeakably bad.

I pray that the CARE has improved since then or at the very least that what you wrote has found its way into the NHS feedback system. 

I am also writing to say that I watched your video on BPD (parts 1, 2 and 3 in the public speaking section) and cannot find the words to adequately describe how good your presentation is. You have such a special gift for sharing your insights, and speaking up for others. It's so lovely to also see your talented son and husband helping to bring your ideas and words to life. You are a class act!

I also want to say how much I love the way that your caring shows through in all that you write and say - your caring for ... care givers, for family, for other sufferers, and, most of all, for yourself.  

With love and affection to you old friend, 
from across the Atlantic x x x

Awwww... Thank you Carole!

Hello Old Pal :D Thank you so much for your encouraging feed-back - you made my day :D :D :D xxxxx

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