My PP story update: feedback needed please!!!

[AnneMR33]

Hello!

I thought I would update you on how things are going on my end. For those who are not aware of my story, I posted this blog back in May:

healthunlocked.com/!/#app-n...

and received really supportive and kind feedback. Here is me coming back for more ;).

A week after the meeting I described in the comments below my blog post, the chief clinician sent me a letter summarising the meeting. The letter wasn't particularly good, he was unapologetic and adamant they had done everything they could at the time with my best interest in mind (yeah right). Conveniently, there was no mention of how my diagnosis of personality disorder had predated my time with them. So I replied to the letter, asking him to confirm this point as well as 3 others: 2. how the picture on the ward was "mixed", 3. how my current psychiatrist had the benefit of hindsight and 4. how there was no record of my behaviour and my GP friend's conversation with one of the nurses after my discharge review.

He should have responded within 20 working days but 2 weeks ago, I still hadn't heard back so decided to chase it up. As it turns out, he had been waiting for my perinatal casenotes from the M&B Unit, which is interesting when you consider how confident he was at the meeting that I had been diagnosed with a personality disorder there. The thing is, he didn't actually need the M&B Unit notes to reply to my letter but never mind. Anyway, these perinatal notes had taken a while to arrive and he had gone on holiday but now he was back so I would hear back very soon.

I did and his second letter was as bad as the first one, he just waffled about points 2 and 3, confirmed point 4 (as well as stating it would be impossible to find out who was working that day because it was so long ago - as a matter of fact, a friend of mine who works as a CSW for the NHS has told me rotas are kept for years so this is potentially a lie). As for point 1, well, surprise surprise, there is indeed no mention of a personality disorder in the perinatal notes but according to his services' own notes, his consultant had once spoken to the perinatal psychiatrist (presumably on the phone) who had told her she felt I had a personality disorder.

I feel quite deflated about the whole thing now. I know I can't give up - I would never forgive myself if I did - but then I look at the Ombudsman form and am quite daunted by the task ahead. I am going to have to be both thorough (in the main body of the complaint) and concise (they also ask you to summarise the 5 main points of your complaint).

So I am once again turning to you for help and support, fellow APP bloggers. What are your thoughts? What do you think should definitely feature in the top 5 of my complaint? Something I am trying to articulate but find it hard to put into words: there is something really offensive about the fact that my behaviour on their ward was interpreted as being ‘normal’ for me and as part of my disordered personality rather than being a sign of a psychotic episode. I mean, what did they know about me to make that judgment? They certainly did not try to talk to or listen to those who *really* knew me. My best friend waited for the best part of the day for someone to speak to her and no one ever came and as I said before, the nurse my GP friend talked to never bothered recording their conversation. We are talking about a medical professional who is effectively family: her husband (also a GP) is actually my next of kin and I have lived and worked (mainly cared for their children) on and off with them for over 13 years.

Another thing is the ambiguity. On the one hand, they maintain that their diagnosis of personality disorder was the best working diagnosis they could come up with at the time. On the other hand, they do not deny that I did indeed suffer from PP, only that I was not presenting psychotic symptoms at the time I was with them. So, in their mind, yes, I had PP but developed it after they discharged me. Which is untrue. I had symptoms, they just failed to spot them. They also failed to provide a coherent list of criteria I had met for personality disorder. Instead they claim my condition somehow progressed from personality disorder to PP in a very short space of time. And because of this idea that “diagnoses evolve all the time” (chief clinician’s words at the meeting), they can add a note at the end of my casenotes but cannot retract the original diagnosis because it isn’t in itself ‘wrong’. Except it is. Personality disorders are not known to morph into something else and then disappear. You either have a personality disorder or you don’t. If you were diagnosed with a personality disorder 18 months ago, you would still have it now. They are lifelong conditions. And according to my current psychiatrist, my GP, my CPN and everyone else who knows me, I definitely don’t have a personality disorder.

On another note, contact with my daughter is improving. She will start staying overnight next week and as I have family visiting for her 2nd birthday this month, she is going to stay with us for 3 days in a row, which is really exciting. Our bond is growing and my ex partner – who could have potentially moved away for professional reasons – is set to work here for at least the next 5 years. And after having to break up with someone who was blatantly uncomfortable when I told him what had happened to me, I met a wonderful man who is incredibly kind and supportive.

So things are looking up but I do need to get myself together and crack on with the Ombudsman application. Any word of encouragement, advice, thought, feedback, no matter how small would be really appreciated. Sorry for rambling and thank you for reading!

[Poulson]

Hi there.

All I can tell you is to stick with it.

I successfully sued Sheffield Health Authority in 2006, although it took me 6 or 7 years to do it.

I was awarded £25.000.00 as an out of court settlement, although I would have got more if I had gone to court.

I was also diagnosed as having a personality disorder, paranoid schizophrenia and also that I was feigning mental illness.

I have been relatively stable since 2006, with a diagnosis of Bipolar.

I wish you all the best.

Please let me know how you get on.

Best Wishes Poulson

[EmmiLou Volunteer]

Hi AnneMR33

Thanks so much for updating us with what has been happening with you over the past few weeks.

You have had such a terrible time over the past few years. You should feel very proud of yourself with what you have achieved. It has been an extremely difficult time for you but you are doing so well.

I am really pleased to hear that contact with your daughter is improving and that she is able to stay overnight. To know that the bond between you and your daughter is growing must be an amazing feeling. That is going to take time but you are doing so well. Great to also hear that you have met a supportive man – it must be very comforting to have someone to talk to through this difficult time.

You have come a long way since your last post and it’s nice to know that everything is moving in the right direction. You are doing really well. Good luck with the Ombudsman application.

Please keep us updated with your journey. We are here if you need anything.

Take care.

Em. x

[Hannah_at_APP Administrator]

Hi AnneMR33, Thanks for the update, it's good to hear things are moving in the right direction for you. What a journey you've had and I hope you continue to make more progress with it. Good to hear updates like this; if you're ever able to put more updates as things develop, that would be great.

Take care

[andrea_at_app Volunteer]

Hi AnneMR33, yes it's great news that things are moving in the right direction now after such a traumatic experience - thanks for the update. I'm really shocked by the treatment you received, not being diagnosed for 4-5 months & the fact that they discharged you when you were so obviously ill - I think even someone with no experience of PP at all could see that! How are you getting on completing the form? I'm sure they can be really daunting but it sounds like you're doing the right thing thinking carefully about your responses beforehand.

It's difficult to know the 5 main points to focus on but to me it'd make sense finding out what exactly the diagnosis of personality disorder is & showing how it's clearly different from what you were experiencing, that there was no history & the onset was entirely different. Can you also print out your 2 posts here & send them as additional documents with the form? They explain everything clearly & show the failure to spot your symptoms & where your care & treatment failed, especially being discharged when obviously so ill & still hearing voices! - surely this is negligence? Also how being misdiagnosed & not correctly diagnosed for 4-5 months considerably affected & delayed your recovery. It's good that the psychiatrist stated in your notes that the first psychiatrist made a mistake - I don't think that statement would've been made lightly so he/she must be sure of the mistake.

I hope you're getting on with filling the form in ok, even if it's long & difficult, I think you're right to pursue it if it's right for you. These are just my thoughts & I'm far from an expert so please don't take my amateur thoughts as advice. I hope this helps in a little way though - let us know how you're getting on.

All the best,

Ax

[Ellie_at_APP Partner]

Hi sorry I didn't reply quickly, I have been away without much access to a computer.

It was really good to hear your update, I had been wondering how you were doing. I'm really glad to hear that your contact with your daughter is improving, and that you are having her overnight, that's so good.

It's so amazing everything you've been through, and your perseverance.

I wonder how the form is going? I don't know what advice to give you really - I guess if you maybe think of everything that happened in chronological order and all the mistakes they made, including discharging you when you were ill, also not getting advice from your friend, people who knew you best, as to what you were usually like re diagnosing you with personality disorder etc. That's all the thoughts I had but as Andrea said, very amateur. But definitely go for it, as someone said above, they managed to sue and got a lot of money.

Good luck