General Trying To Trust And Use The NHS Crisis System Or Should I Not Bother Anymore

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amethist

MyPTSD Pro
Yesterday hubby had a major crisis, so bad that he thought of ending things and I had to come home to help him through it.

This being a particular bad episode, because of the suicidal thoughts, I decided to try and get some help as I had been advised to do if it ever got to this stage and the help would be there.

The first time he needed help was back in December 2007, before ptsd was diagnosed and he had just started to drink more than he should. I came home to find him crying like a baby telling me he wanted to end his life. So I called the emergency doctor, as it was Sunday. They could not get out to see him and told me to take him there, not a cat in hells chance of doing that. Ok they would come out eventually, but told me if he gets violent call the police. WTF he was rock bottom and not an ounce of violence in him, he was curled up sobbing his heart out.

Second major incident was along time after that, but again went down the NHS route, guess what it was an answer phone. So a few phone calls later I was put through to local hospital crisis team, sorry can't help you need to go through NHS direct, er it's answer phone and has been for over an hour. sorry but that is what you need to do. I ended up with help from a friend on a web cam in US for 4 1/2 hours to help him through that one.

Third time lucky, not a chance. He felt so bad in his head last year, he asked me to get him admitted so he could have intense help and treatment. After numerous phone calls again,
the crisis team finally agreed to come out and see him. It was 2.30 in the afternoon, but they would not be out until after 11pm that night, so I got them to agree to see him if I could get him there. So they saw him and arranged day care, which was cut short because of cut back. The best bit was, they said he was very calm considering he was in busy A&E unit. OF COURSE HE WAS, BECAUSE I WAS KEEPING HIM CALM. Needless to say no real help then either.

Then yesterday, numerous phone calls yet again and being put through to his community support worker who has already told me she does not know very much about ptsd. I thought they were putting me through to the office for the crisis support, yea right.

He was upset there was no help, I was furious about it all, and then to cap it all off his support phoned this morning and asked "Why is he sleeping at this time of day". DER because he is exausted and his brain needs to calm down and rest, so he can pick himself up and carry on.

Ok so for the fourth time of going down the NHS route, maybe I should not bother next time. These were the main major issues, there have been many many times when he has needed info or just simple stuff, but still no joy with all those times either.

This does not include the fact that when he was in detox for the drink in April 2008, they were the first to mention ptsd but nevr told anyone else and i only found that out a few weeks ago.

Any other's have issues like this, or is it just bad luck on his part.

Amethist
 

Shoka

MyPTSD Pro
Hi Amethist

I'm not familiar with your health care system, but is there some sort of politician you can write to to outline your displeasure with the quality of care (or lack of it) that you are receiving?

I'm so sorry about this for you!

Shoka
 

Nicolette

Supporter Admin
I'm sorry Amethist. I would hate being in your shoes let alone receiving that kind of response.

Is there a governing board or association you can contact? I had issues with mistreatment last year and the relevant boards in Australia responded reasonably well and the practitioner did get counseled and is now having to undertake courses monitored by the board.

The sad part about this I guess however is that what do you do in a crisis as approaching the bureaucratic side can take months?!
 
Hello Amethist

You're not on your own with this.

In my experience in Somerset, Primary Care (A&E, on call Doctors and in general most GPs) are severely lacking in knowledge and understanding of how to support someone with PTSD. Even Secondary Care Services (Mental Health Hospitals and Community Support) have limited understanding.

It can take time to establish therapeutic relationships with MH services but then their crisis teams are better able to respond. Engaging with services during the 'better times' makes it easier to access their support when in crisis. I guess this would be the same even if you went private?

Just a thought: perhaps we need to lobby for a PTSD Crisis national phoneline.

Take care
LH
 

amethist

MyPTSD Pro
The good news is that hubby bounced back very well, even more determined to move forward than before his crisis. I have found that this does happen though, it's as if he is understanding more and more every time something knocks him off balance.

He says it is because he trust me to teach him each step of his recovery in a way that he can use and understand easier, maybe this is because I know how he ticks over better than anyone else. Whatever the reason, I will carry on the way that is best for him and not by our NHS systems so called book.

He does trust his therapist, but his reason for this, but to me it is a bit off line. He says he trusts him because his therapist backs up everything I tell him or do with him. Maybe I should be a therapist instead of working in a shop LOL.

I will write more later, as my youngest daughter has just arrived.

Amethist
 

cherryblossom

MyPTSD Pro
The mental health care system in this country is rubbish. I say that as both a PTSD sufferer, and also from working in the NHS and trying to access appropriate mental health care for my patients.

As a PTSD sufferer, I have had little help. And what 'help', I've had has been poor at best. My GP is great, but even he is struggling to find someone to refer me to because the system is so poor. About 2 years ago, I was assigned a CPN, who I saw once, and who never contacted me again. I saw a psychologist who did EMDR with me and caused me more harm than good, because we didn't do any preparation or grounding work. She said she would follow me up after six months to see how things were. I never heard from her again. Whilst in crisis, I missed 2 Psychiatrist appointments because my anxiety was so bad, I couldn't leave the house. I got a letter stating that since I hadn't attended, it was assumed that I no longer needed their help, and I was discharged .... I could go on with further examples, but I think you get the idea. Needless to say, I currently have no support or help from the NHS. As a patient I have found the mental health service to be very poor, and that is just as a general outpatient, not during times of crisis.

As a Paramedic, I see lots of patients with mental health problems, particularly during times of crisis, when feeling suicidal etc. I have tried numerous times to contact crisis teams, social workers, CPN's etc during 'out of hours', and have never been successful. It's very frustrating, when the only thing I can do for a patient is to take them to A&E. Here they will probably sit for several hours to 'calm down', will be treated for any overdose, and then discharged. If they are very lucky, (and it's not late at night or the weekend, and providing they are sober and clean from drugs (often unlikely during a crisis)) they may be seen by someone from the 'on call psychiatric team', who will likely discharge them and arrange an appointment at a more suitable time for them.

Yes, the system is appaulling. I only wish I had a solution :wall: I don't think your hubby has had bad luck in his treatment. Sadly, I think it is the norm in this country.

The only thing I can suggest is that you talk with his therapists/ psychiatrist about what has happened, and demand to know who you should be contacting if the same thing happens in the future. If the answers aren't good enough, then perhaps ask the same questions to your primary care trust, and keep taking it up to the next level, until someone listens to your concerns. Like Ladyhope says, this could turn into a campaign!!

Regards,
CB
 

dust

MyPTSD Pro
URGHHH! Don't get me started on the NHS! I can't believe that they treat people with PTSD so terribly! When I was full blown, it took me over one week to get an appointment with the GP - I eventually broke down on the phone and had to beg to see someone. A bit later, a psychotherapist I had been seeing on a monthly basis diagnosed me with PTSD and told me I needed EMDR. I then went to my GP, who told me there were no EMDR specialists in my catchment area, but advised that I should have an assessment within the general practice. The woman that did the assessments was away, and there was no cover (this is when things get blurry as I don't remember much from this period) I don't think I got offered anything for over 3 months, by which time I had got so desperate that I had already started EMDR privately. I was in a terrible mess. When I asked for advice about where to turn my GP gave me the telephone number for MIND (a mental health charity). At that point, I was living on my own, had full blown PTSD from childhood memories returning, was working and could not get any support. I was living on next to nothing and had to take on extra work to pay for the EMDR - even though I was already too sick to work. It was a terrible, terrible time. I don't know how I got through it.

What makes me angry is the way that people with Mental health issues are treated. Mental heath in this country is desperately underfunded. It is so unfair.
 

amethist

MyPTSD Pro
Thanks for all your input with this.

I have just spent the last couple of hours reading and trying to digest the NHS, National Institute Clinic Of Excellence pages relevant to the care of PTSD. They are having a laugh aren't they, and at the sufferers expense. This was obviously written to satisfy the needs of some numpty, just so that it seems to be the norm of care, or am being a bit negative toward's this. A lot of it is just bumf to me, OK yea so it is written for the so called specialists, maybe they should read it, they may learn something.

I have decided to print off some of, OK a lot of the info on here. Then give it to hubby's Community Health Care Support, you never know she may just be able to understand some of it. I did give her this web site months ago, so she could get more of an understanding of what she was dealing with. But she is too busy to take time to have a look, or cant be bothered.

One of the things she did say to him was about the rota I have put up on our notice board, with a list of things for him to do every day. According to her it is a bit harsh, but her pushing him to go out when he is having a bad agoraphobic day, or leaving him in an almost melt down state is OK. she is with him for roughly 1 1/2 hours a week, she does not see anymore than that, she does not know how he ticks over, But it is me who getting it all wrong.

HELLO LADY IF I AM GETTING IT SO WRONG HOW COME HE IS STILL ALIVE, NOT DRINKING ANYMORE, SLOWLY IMPROVING AND FIGHTING BACK AT PTSD AND ALL IT THROWS AT HIM.

If she does not read, inwardly digest and take notice of any of it, she will be on her way out the door never to show her face again here. :rofl:Hubby's words not mine.

Like we all keep saying we are on our own with this, but winning in our own way.

Maybe we should all complain on mass about the NHS here in the UK and it's treatment of ptsd sufferers and the inadequate care the so grudgingly provide.

Amethist
 

ISupportHer

MyPTSD Pro
:Hug_emoticon:
Very frustrating Amethist. I think there may be some people in some rare cases that seem to get their needs met to some degree. Can't speak specifically to the NHS but I think those with Behavioral Health issues are under served everywhere.

I mean, I hear of some good programs and good experiences, but I more often hear the bad stories. The frustrations of needs far exceeding the resources. Sometimes it IS people in jobs that perhaps they should not even have.

Thank you for sharing theses frustrations and, like a lot of things here, there may not be a "fix" here, but it helps to know others feel the same and validate your feelings.

ISH
 

dust

MyPTSD Pro
Thanks for all your input with this.

Maybe we should all complain on mass about the NHS here in the UK and it's treatment of ptsd sufferers and the inadequate care the so grudgingly provide.

Amethist

I agree, something really needs to be done. I think a good beginning would be to write your experiences to your MP and ask for some clarification on mental health provision in your area. I plan to do that too.

I believe in the NHS, it is a fantastic service, but mental health is such an enigma! Many of our issues are also long term... eeekkk. There have been things written about the significance of the payment in within psychotherapy - as someone who has made many sacrifices to pay for therapy over the past years, I can say that I get my money's worth and work hard between sessions! But, that is something different from basic needs which *should* be provided by the NHS - that is treating and offering support to someone with unbearable PTSD symptoms.

dust
 

Claire

MyPTSD Pro
Hi Amethist, I've had no help from the NHS either. Aside from that have you called 'Mind' to see if they can help at all?
 

amethist

MyPTSD Pro
It has been a while since I last posted on this thread so an up-date for you all. It seems my kicking off at his support worker over the phone the day after hubby had a crisis made an impact on her. It was the question, "Why is he sleeping at this time of the morning that was the straw that finally broke the Camels back", this proved positive that she did not have a clue about ptsd.

So I set to and printed off about 30 pages for her to read. Hubby also picked out pieces to highlight so she could not miss them.

A few days after hubby's melt down, his support worker came to see him again. Bringing with her a Mental Health Nurse, who understands PTSD. OK so this may not be much to some, but to us it was a complete shock, he had come to asses hubby and to give him another contact number, when he is in need of instant help through the day. This guy fully understood everything and agreed that the care he and other sufferers should get when in crisis mode is almost non existent outside of working hours, and scarce inside them. What we have done so far, even the daily rota is exactly the right way to go, even the print out's he had for his support worker were the thing to do, as she can only help if she has the right information. He even laughed at the highlighted part that stated there is no cure for ptsd, especially because hubby told her to read that bit before she left.

So maybe, just maybe, she will take some time to learn and not just put him the "Simply depressed" bracket.

I also went to another carer's support group meeting last Thursday, they are trying to organise different people to come and talk to us about availability of services. A suggestion was made for someone from the crisis team to give us an idea of how they work. I said it may not be a good idea if I came along that evening, as they did not want to see my friendly Doberman come out to play. :rofl:After I explained about the Doberman, they said no come along, it could be interesting to see them fight her off.

And I thought I was wicked at times.

Amethist
 
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