Here we can all be heard for a little while. Part 2

faerielight

Hi guys, hope you're all doing ok and have had a good weekend...
Mini rant about the mental health teams ahead...

I'm feeling so frustrated with the MH systems.. When my friend and I spoke to the MH team on Friday, they told me to call the Urgent response team, which is basically telephonic mental health A and E, but I told her that the UR team have told me 5 times not to call them and have redirected me back to the MH team. My friend came over this eve and we rang them and surprise surprise, they told me not to call and to call the MH team on Monday..

My friend lost his rag with them as every systems passes the buck and sends me back and forth but none are taking responsibility of care for me and they won't help me..
I'm so glad my friend is advocating for me, but he told this team how crazy making it is for him, with no mental illness, to be sent round and round the houses. and getting no help., let alone how utterly crazy making it is for me.. The last time I tried to ring the Urgent response team, which was when my bowel surgery got cancelled a few weeks ago, the worker, got really angry with me because she gave me 3 options and got annoyed when I said none were good options for me.. The 1st, was the drop in MH day centre where I got harassed and grabbed by men, the 2n,d a women's centre which, because of my disability cannot get up the 3 flights of steep stairs, and the 3rd being a born again christian support group in a church, of which, I';m phobic of churches and don't want to tld I am possessed by the devil
unless I convert.
.Anyway this worker tonight told me to use these 3 options and my friend corroborated that none of those were actually options for me because if the above reasons and he told them he witnessed me getting grabbed in the MH centre recently, and that the other 2 were not options for me.. It didn't make a blind bit of difference, and he still told me not to call if I a in crisis but to go to A and E, which is not a nice place to go when you're in crisis, and I have a terror of hospitals after the medical negligence..

My friend is livid, he had steam coming out of his ears and is geared up to fight the MH team when he speaks to the team on Wednesday. I don't know how to get them to help me, I really need a CPN.. I am going to make headway this week writing a massive complaint to them.. Luckily, my mind advocate has kept notes from the last 4 years of fighting to get help, and my friend has been keeping notes the last few weeks. Plus it was a good plan to have him with me with every contact of the MH teams, as he can prove that they are sending me round the houses.. I feel like tearing my hair out, I'm so frustrated and angry with them..

I'll see what wed brings but I'm not expecting anything. All the lady from, the MH team was going to do, was ring the trauma centre again, but nothing will have changed, they're not opening their admissions for 4 to 6 months and I'm nowhere near the top of the queue.. My friend had I have explored all avenues of support and jumped through hoops for the MH teams. I cooperated with everything the team had asked me to do, but I don't have a single option for getting support and they really should be giving me a CPN to get me back on track til I get to the trauma centre, but they have made it clear I will never get a cPN again. It seems to me that you have to be a danger to others to get help on the NHS. Thery gave up on mr years ago, and they don't want to help chronic life long mental illness like BPD and PTSD and I really am worried about deteriorating any more that I already have. :(l

Waves_and_Smiles

I am so very glad that you have people advocating for you, Faerie. Sometimes you have to keep pushing and although it can feel like you are hitting your head off a brick wall you have to keep going. This is why it is so good that you have someone who can do that for you. This may sound silly, but have you tried asking for a new and much better psychiatrist? I know you have a very bad experience with one but they there tends to be others that you can see and they are often the path to a CPN. Simply having one that you can talk to regularly can open doors and I also wonder if your medication could do with a tweak? It doesn't always mean it needs to be increased, in my case after 10 years of taking the same antidepressant I was so tolerant of it that it stopped working so needed to be put on a different type.

I know it's hard for you (it is for me too!) but try not to dismiss A&E as an option. It will mean the crisis team becomes involved and they can also push things along. Let me tell you a little bit about my experiences of A&E which were always positive and helped me a great deal.

I totally understand that the thought of hospital scares you, when I go to A&E I look completely daft sitting in the waiting room with a blanket over my head! I do explain that I have huge problems with waiting rooms to the receptionist (often by giving them a note) and they do tend to move me through quickly to a bed where I can pull a curtain around myself, often within 5 minutes of arrival if there is one unoccupied. After I had been seen by a triage nurse the hospitals have always been very good with me and placed me into a side room rather than a ward while I wait for the crisis team (which granted can take 8 hours depending how busy they are, they tend to visit several hospitals in the area). They would check on me every hour or so but mostly just let me sleep inbetween bringing me tea and biscuits and I stayed hidden away and felt very safe. One nurse even bought me an extra pillow because he thought I might need one to cuddle, that is how sensitive they are to how you might be feeling. Isn't that sweet?

My psychiatrist told me to always go to A&E when I felt that I wasn't safe and couldn't control my psychosis, before I reached a level of being in danger. Sometimes this happened several months in a row when we were still trying to find the right medication balance and I was often unstable. It was also a lot cheaper for the NHS than hospitalising me for weeks at a time whilst we waited to see if the latest medication was the correct dosage and combination. They would inject me with a large dose of anti-psychotics and then put me into a side room alone to sleep until I felt better. This isn't as scary as it sounds because the dose would be so high that I would be asleep within 20 minutes and then wake up periodically feeling very calm, warm and comfortable. I could have WaSp sit with me if I wished but he often went home and came back later to collect me because all I wanted to do was sleep and barely noticed that he was there. It honestly wasn't scary at all and for me, it was right where I needed to be when I was in crisis.

Then I would see the crisis team and they would temporarily adjust my medication to a higher level to start immediately which made me into a zombie but kept me safe until I could get an emergency appointment with my psychiatrist and we would try again to find the right balance. In my case this went on for 10 years because there were so many variables that triggered my illness with many nights spent in A&E in that time (I always seemed to have a crisis at night time, then we figured out that tiredness is a psychosis trigger for me so increased my evening medication). It helped me so much on many occasions and I doubt that I would be here now if that hadn't been available. Now I haven't needed to go for over 8 years and have had only one situation where I have needed to be briefly hospitalised in that time (thanks to benefit forms panic!) but I definitely would if I relapsed badly enough. If you can at least consider it, it could help a lot, it has always tended to move me through the system a lot faster and without fail everyone was very kind and gave me the privacy I needed.

I hope that this might make you feel a little better about the possibility of going to A&E, the doctors and nurses have always been incredibly understanding and done all they can to help me to feel better. Gentle hugs, hang in there.

faerielight

I wrote a really long reply but I deleted it by accident! I do remember you talking on here a long time ago that covering your head works for you, which is a clever idea :)PENGUIN,, A and E really is out for me, though, as they nearly killed me in there and I am terrified of hospitals..
I've had some serious post operative infections before and I couldn't make myself go back there, until they became life threatening..

The trauma psychologist who assessed me for EMDR said it was the worse case of medical PTSD she'd ever seen and she always said that what I went through was akin to being in a war zone, and every time I had to go back into hospital, it was like going back to live in the same war zone.. the analogy made sense to me and one of the reasons she wouldn't let me proceed with the Emdr, apart from not being emotionally safe because I still have to go back there for my next surgery, but also because the therapy was in the hospital I nearly died in and the therapy room was a NYHS room with blue curtains, fleuro lights and the smell of antiseptic and I struggled to be in the room ., As soon as I saw the blue curtains and examining bed, I disassociated and flashbacked .. Hospital rooms are so traumatic for me
Regarding changing psychiatrists, it's tricky as all the psycs work under the one who I recorded telling me to go and kill myself, so due to my catchment area, all roads lead back to him.. I was under a different one this past 4 years but he had to ask the abusive one to get me any help and it always came back with a no as he was working under him.it's scary what a power trip the abusive one is on .. I fought for 3 years to get a proper assessment for PTSD, I hadn't seem the horrible one for years and yet he was telling my psyc to tell me that the horrible one had diagnosed me from afar without any communication for years, as having Adjustment Disorder, and that I was over reacting to a minor incident.. ie the sepsis bowel perforation trauma.. It took 3 years t overturn his diagnosis from afar..
Regarding my meds, they have to be careful as I have severe liver damage from the sepsis and I'm already on 42 tablets a day, plus I'm on a high does of morphine so they have to be careful as the combo of psyc meds and morphine can cause respiratory depression, i/e the breathing slow dangerously down.. I did get put on seroquel XR recently as I was starting to hallucinate from lack of sleep, which helped,. but I would love to get on valium again as it is the drug that is most effective, but they are cautious as I was addicted a few years ago.,. I'm only allowed a script a month before my surgeries and also when I'm on a ward, post operatively as I freak out so badly and disturb the patients with my PTSD freakouts. The rapid Response team we spoke to tonight is physiciatric A and E, it's there as an alternative to going to A and E.. they just signposted me back to the mental health team.. it is getting so frustrating going round and round in circles.. I'm so angry tonight and my friend was too I'll see what wed brings, but I don't hold out much hope.. one of the main arguments that I have repeatedly with all the teams, is that they say that it's not a mental health problem it's a physical one and I'll be fine once I've had my surgery, which is a ridiculous argument as I have preexisting BPD, plus the most severe end of the PTSD spectrum from the medical negligence.. My friend and I had this argument again with the rapid response team.And this worker actually said why don't I get my surgeon to give me support , which he must know is an insane thing to say! , he's a surgeon, not a therapist and I get 10 minutes with him twice a year for appointments!.. They know that's a stupid thing to say, it's just another way of them to pass the buck. ..
PENGUIN
It's so simple.. I need a CPN, and I need my operation but due to the cuts, in both areas, I'm not able to procure either .. It's a new week and both battles continue

Wellyboots6

If the cpn and the surgery are not options Faerie, what options are there, if any? You mentioned the three options you were given, what have the women's centre said about access? Usually they have to have some way of people with disabilities accessing the service. I wonder what provision they have made for this? Also, is the Christian support group actually a Christian support group, or just held in a church? I know when I worked as a therapist we used buildings like that but weren't religious in any way, it was just somewhere we could get a room cheaply. Even if they are Christian I'm sure you could explain you are there for support and not religion. They have nothing to gain by trying to convert you, but any support you can get may be useful.

Just some suggestions, as it sounds like the solutions you want may take a while to happen, so you may have to tweak other options in the meantime to get some sort of help to tide you over.

Flybaby

Thanks WaS - your words made much sense!
{Faeriesquish} - I have nothing useful to suggest or say, but wanted you to have a squish and a hug from me. Yours is a most challenging situation to deal with and as you say, even your friend, who is physically and mentally healthy is tearing his hair out about it, so for you to have dealt with it for many years, with your particular issues on top, is astounding. IMHO, you are amazing.

Waves_and_Smiles

Yay! People are here! Good morning people!

Faerie, let me have a think and see what I can suggest if anything. I do think if you only opt to see a CPN and nothing else that it might not happen unfortunately. You may have to take another temporary option until you can begin therapy to tide you over. Of course, the problem is figuring out what that option could be... Can you remind me again why social services isn't an option? I do remember something happened but my memory won't reveal what it was.

I hope you got some sleep, Welly and escapette didn't keep you awake all night.

Morning Flybaby! Good luck for today, try not to panic. Easier said then done I know. Just try to remember that everyone will be feeling as lost as you right now, even if it's for different reasons.

whitewing

Faerielight,

To help me understand, could I ask you to list everything you think a CPN should do for/with you? (I don't know much about CPN's anyway, but it may help to have a list before you commence this week's battles).

Wellyboots6

What is sleep WaS? Remind me again...
We are having tummy problems again so trying to work out what is best feeding-wise for her but no idea where to start really. Just hate seeing her so uncomfortable. She is an absolute star though and doesnt cry unless she really needs to.

I am getting absolutely sick of Guns N Roses though! I remembered she used to like listening to them as a bump, and turns out now when she is upset it immediately settles her, so had Guns N Roses albums on repeat all night! Trying to remember what the other music suggestions were so we can vary the repertoire a little.

Hope everyone else is doing OK today.

If I ever get dressed might attempt a little walk, but other than that it's just going to be a day trying to catch up on odd jobs

Georgiegirl256

Thanks WaS I'm trying to forget about the thing that is worrying me, but failing. It's there in my mind constantly. Even when I'm doing fun things, it still pops into my mind and I feel stops me from fully enjoying things iykwim?

I'm looking forward to the holiday, I love Vegas, I feel comfortable there, but I just know the "worrying thing" is going to be constantly there in my mind, I try not to worry, but I can't help it

I will try my best though

Hugs to all that need them x x Faerie, I know you're not getting the help and support you need yet in real life, but I am so glad you've found this thread and feel that you can talk and open up here.

Georgiegirl256

Guns n roses Welly....top choice! I guess anything can get annoying though when played constantly! :rotfl:

Hope Uni goes ok today Flybaby