Been in hospital - low, scared, asked for help not got it

[Keziahhopes]

Had scary time: collapse, ambulance, resus, HDU, acute stroke ward.

Thankfully not a stroke, but have all the symptoms: slurred speech, one sided weakness, sight probs etc. Hospital were great, a neurological problem. Home now after lots of intensive physio and ot help to get me on my legs. I can wobble a short distance only so very restricted in what I do right now.

Went to see a dr at health centre as it all hit me, my care co-ordinator being off ill for months, no therapy or counselling support for a year and I recognised the signs of how this is hitting me. The dr I saw said to my dh that he is not responsible for me, it is for me to get help myself!! Uh, I rang CMHT, got told no duty worker on so can't speak to one, my care coordinator they don't know when back (not that she does anything just facilitator she says) and can't see anyone else unless psychiatrist says so. Taken 3 weeks to get psychiatrist to talk to manager of cmht - end result I got told was "complicated" and that was all. Got told unless I am sectionable can't have help. What do they want to do, wait until I am suicidal before they do anything? I am going that way but don't want to and the gp dr I saw has seen me once in my life and told me I have been a lot worse when she saw me last year so go home and take diazepam.

The stroke dr I saw on discharge said that stress could make this happen again - it is a neurological, physical problem and I needed help from cmht, so saw a gp to ask for help. She said unless I am sectionable she will do nothing.

Why because I will nto say I want to end life can I not have help. I can hardly walk, had scary scary time in hospital - couldn't even take self to toilet.

Am falling, physically and mentally and I know the signs. Stroke dr said I was very low and concerned about me. She will write to my gp (couldn't get apt to see him -a 4 week wait usually, right now unless phone at 8 for emergency apt and they go so quick have to phone every day) to say I need more help. I didn't mention mental health at all she just noticed I was on an AD. She asked if gp could get access to counselling for me - this lady gp I saw said "what do you expect from me on a Friday?" Well she not doing anything about me. Then my dh goes back to see her in tears as he not coping and gp says I am not his responsibility it is my responsibility to get help!!!

How can I? Can't cope - can talk now, need help doing anything and got no support till see stroke dr in 2 months in outpatients.

Sorry - essay above.

[Chocattack]

Sorry to hear what a horrendous time you're having. Sounds very frightening. Unfortunately it does seem the norm that professionals don't want to intervene until you're in absolute crisis. It's so wrong - it could save so much time and heartache if things were responded to when a need was identified. The lady gp sounds a jerk - sorry! Does she think people stop being ill because it's Friday? Could you keep pestering your gp even if that means emergency appointments?

[NanaNina]

Kezia - I am a little confused by your post. How long ago was the attack that landed you in hopsital? Was your care co-ordinator for your physical health or mental health? Were you involved with CMHT before this physical attack, or did you just try them to see if they could offer any help.

You feel you are in need of help from MH service. What are your MH sympton Kezia - is it anxiety over what happened to you physically or depression, although it is often not possible to separate anxiety and depression is it. You mention being on ADs - how long have you been on them - was this before or after the physical attack? Are they not helping in any way. I really don't understand this business of the psychiatrist having to talk to the manager of the CMHT - it is usually the other way round. If the GP is worried about your mental health they will usually refer you to CMHTand you should get assessed by a soc wrkr or CPN. It is quite ridiculous to say that unless you arre suicidal you cannot get any help. And as for saying the matter is complicated - doesn't make any sense. I am wondering if you do not have much physical or emotional strength at the moment and so can't be assertive and ask what they mean by "complicated" and press for answers.

Am I right in thinking that your stroke Dr wrote to your GP and asked if there was any counselling available and she made that stupid comment about it being Friday. She should have referred you for counselling (it is usually 6 sessions of CBT but there are some other therapies available on the NHS) even if there is a long waiting list.

This female GP who is not helping and making stupid comments about not being able to do anything because it's Friday and telling your dh you are not his responsibility and it's your responsibility to get help yourself. I honestly feel you should make complaint to the practice manager about this GP as how she has handled your distress is totally unacceptable.

Is your Dh able to provide the help you need? Do you have children?

It sounds like there has been a complete breakdown in communication in your case. What is the biggest problem - they physical disability or the mental health issues, or are they sort of merged together.

Sorry to ask so many questions - just trying to get a clearer picture.

[Keziahhopes]

Am under CMHT - meant to see my care co-ordinator once a week, not seen for 8 weeks. Got a sw, she is useless anyway now off long term sick, which we only found out by phoning. Out of hospital on Friday for physical reasons - not had physical issues like this before!

Dh being great but I fell yestrday. When physical health gets worse (I get lots of infections etc) my mental health gets worse, my old cpn worked this out (she was great).

Mental health - PTSD, dissociation, depression and self harm issues. Was meant to be getting talking help last year, had 4 sessions and was told I was too ill for it as had been in a psychiatric hospital twice in past 6 months.

Now can't do much physically and exercise helps my mood and am scared. Thanks for saying lady gp out of order - nice to know not just me that thinks that, helps rationalise that.

Nananina - yes, all merged together. Stroke dr insisted I got more psych input to help recover from this suspected stroke as am 36. So I asked.

[Keziahhopes]

Hi - see stroke consultant in 6 weeks, and have community physiotherapy assessemnt this week.
Sorry should have said the Gp I saw not my own, but only one I could see that was free. I will NEVER see her again - she made me dh cry and he didn't cry when the ICSI failed. (No children, need ICSI due to male factors).

Dh phoned my Gp, he rang manager of CMHT... she said my care co-ordinator, a social worker is off ill (uh yes, 8 weeks I worked that out) and it was "complicated." So nothing happens unless I need sectioning!

Feel lost.

[AimingForSerenity]

Kezia, is it worth ringing PALS or whichever similar patient liaison group you have in your area? I don't know if they can help but they seem to help a lot in our area.

I work for the NHS and know we would jump through hoops rather than have patients left in the lurch like this.

[Keziahhopes]

Hi rang Pals today and they said I have done everything I can, like get dh to go via Gp, to contact the manager and duty worker etc.

Went to Gp today for emergency apt again, in floods of tears. Was told by old cpn I didn't ask for help until it was too late and ended up in hospital - so I have asked for help, and got told no not unless you need sectioning. Am exploding, hurt self in secret - don't do things to get help, just to cope. Feel like am going backwards.

[Keziahhopes]

Got stroke consultant apt through for 6th July.

Dh been in daily contact with our gp (who helped, not the triage gp I saw first) and my community mental health team).... I have followed my care plan totally but they have refused for duty worker to talk to me or to follow their part of my care plan. The manager has rung back eventually my gp and said they took my case to multi disciplinary team and they will not see me as my care co-ordinator off long term ish (they don't know) sick and that is that... all they will do is phone crisis team for bank holiday weekend. I am only allowed help if I am prepared to say I will kill myself to the crisis team, as that is a different team and that is only until Bank Holiday Monday. Yep, at 5.05pm today this is what my dh says.

I have 3 mental health labels, my old cpn said I got into crisis too often so she refused to see me anymore as I didn't ask for help from CMHT early enough ... now they only want me to go to Crisis. I am confused.

[Chocattack]

I don't think I have anything constructive to say - it all just seems so frustrating! You're damned if you do [ask for help], damned if you don't. You're confused? Hope you can get through all this. At least it sounds as though your DH is supportive. Is there any louder he can scream on your behalf?

[Keziahhopes]

Dh rang gp daily, rang manager of CMHT daily almost for 3 weeks they said "no" - crisis only if I press the right buttons. I sort of feel that if I am not here then there will be an inquest and then other people not have to feel like I do.

[Chocattack]

Blimey it sounds like you're doing everything. But please don't think that by there being an inquest other people won't feel the way you do. Unfortunately they will because the resources just aren't there for MH in many instances. But I had always thought that the louder you shout, the more you get heard though that doesn't seem to have worked in your case. Are things getting worse?

[Keziahhopes]

Things have got worse, I refuse to press buttons needed for crisis but gp referred me for crisis team anyway so seen them now. Lady said I was doing everything right - helped to realise that since January life has been awful and she said anyone would struggle with what has happened ... see them again on Monday and then they write report and that is it.

Know no resources for help - others deserve them and I don't I know that, I just want to be able to cope myself. I am either too ill for CMHT or they short staffed to help - I can't win. Psychiatrist said "go private" as well she can with her priviledged background and income.

Thanks Chocattack. Nice to offload.

[Keziahhopes]

My Gp will not let me have access to the short term counselling they can refer to as too complex and I have looked up charities and there are none whatsoever.

Short term I would like someone to talk to, to help me offload all the stress and triggers I have faced with this recent event and of last few months, so I don't spiral down lower than I am and end my life.

[Chocattack]

The Samaritans are always there. Please ring them if you need to talk to someone. Are you able to talk to dh too? Your situation sounds very stressful. Just do the best you can.

[Keziahhopes]

crisis team said they refuse to see me as community mental health team not following my care plan... my husband is aobut to crack after consistently phoning their manager, gp, psychiatrist --- all of whom eventually said, if you in crisis we can refer to crisis team, if not we are too short of resources. Uh - I have a care plan that they are not following and their result says "we have no one for you - just for other people".


At least in an inquest they will get in trouble and may have to change their practices for others is only thought I can hang onto

[Chocattack]

Kezia, sorry I don't properly understand the relationship between crisis team and CMHT. You say your care plan isn't being followed. I don't understand why PALS can't advise on how to get this followed through? Do you not have grounds for a formal complaint? Or could you contact your MP? Don't give up trying. An inquest is only ever likely to result in a slap on the wrists - nothing much will change. Well that's what seems to happen where I live.

[Keziahhopes]

I was referred to crisis team for 3 days, they now passed me back to CMHT who say my next session with them will be a meeting in 6 weeks or so. My care plan I have had since autumn last year says I should see someone twice a week, but they say they are short staffed and I can't even follow my care plan for when I get worse.... which is to increase contact with care co-ordinator (not seen for 8 weeks plus now) or speak to duty worker. Tried duty worker - both times they said there isn't one.

Pals told my husband we have done everything right and they can't advise any more. Formal complaint we went down last year, when my cpn said I didn't ask for help soon enough and was not improving - was too ill for her so CMHT decided 26 weeks without any input from them was best... advocate told me if I stayed ok they would say I was ok if I needed help that I was too ill for them - indeed the game they played. Had to go through assessment to have help, to get a care plan. Since then they gave me a social worker as a care co-ordinator, psychiatrist moved on, social worker says I cannot cry - if I do I have to end session, if I say anything negativ ethey have it written into my care plan the session ends (cos of formal complaint that was upheld!!), can't talk about my life or emotions with her. So the fact that she is off ill as she can't cope made no difference .

I have written things down in detail since last year - advocate told me to do that. Advocate moved jobs too. Got copy of advocates detailed notes too - pals or mind advocate. Phone logs of every call to manager, letters from Gp, the number of times psychiatrist says has to talk to manager of cmht, cmht manager says has to talk to psych so nothing can happen. Crisis team told me today that they will refuse to see me even if in crisis and will put it in writing due to failings of my cmht.

Why can't I just actually have help to recover? I am not asking for anything, not demanding extra help - just someone to listen to me, to do their normal job and I am not playing the "I will cut so someone has to act at A+E game, or OD which is what the crisis team said is the only way I will get any help." An inquest is all I want...... my husband will ensure that a slap on the wrist doesn't happen. I can't complain again - due to the complaint no cpn in my cmht will see me, they all refused.... and I couldn't go to the therapy team as they refused. Had to travel out of area for assessment as no one in cmht would assess me, this care co-ordinator was new to team so not totally annoyed at my complaint being upheld.

See it is all political, I never wanted any of this.. I just wanted a chance to get better. I have never had a counsellor or a psychologist, no support worker, no sure start, nothing other than a care co-ordinator and a care plan that is no use as they said they can't meet it so will re write it to reflect their staff shortages.

See - this just reads as a complaint. That is all anyone sees, no one sees the person below as it has all got lost. I am lost, there is no point if I can't recover adn believe me I have used all the strength adn energy I had. It has gone.

[Chocattack]

I think I understand. You've got a huge undertaking even without the suspected stroke. It sounds as though you really have exhausted every avenue. However, you mention you travelled out of area for assessment. Could you not be seen by CMHT out of area too? Though I know probably not ideal. I only say this because I enquired a while back to NHS Direct (I have past 'issues' with my CMHT and was worried about being referred back to them) and was told by them that my gp could refer me anywhere. I hope I haven't been told wrong information.

It's shocking that you are effectively being pushed through A+E. How does that help anyone? I really feel for you, Kezia.

[Keziahhopes]

No, assessment over and as I don't have anyone from own CMHT to see me, can't go over results of own assessment. Definitely no one from out of are will not see me and my gp said he cannot refer me to anywhere out of the area I live.

The duty worker was supposed to phone at 9am to arrange to see me today, guess what - no apt, spoke to 2 secrataries, no duty worker slot for me. Crisis team will nto see me.

I have written my suicide letter, got all I need. Have given up asking for help, support, for my care plan to be followed even at 10% (well there are 3 points on it, but can't be bothered to do teh maths!).....

Glad your gp got ability to refer you anywhere. However we live in NHS postcode lottery days, so am sure you not told wrong information just I am stuck.

My husband says "lets go out for a cup of tea" and "I have phoned" - I can't go out in public, I am crying hysterically.

Now physiotherapy rang me to say because I had one 30 minute session teh community outreach team can't see me, they have a waiting list of 6 weeks, I need to be triaged and they don't have to see me legally for 18 weeks. Yes, those are the exact words of the lady who saw me. Not my fault my gp sent me to a different physio to sort out a crutch for me so I didn't fall over all the time. So have no hope of being able to do anything physically due to people nto having to see me,

sorry for typos as left hand no use. Thanks for your kind replies choc x

[cityhobgoblin]

Hi keziah , sorry for coming in so late . Anyone who reads of your situation is horrified by it but I am sadly not surprised at the lack of treatment / humanity in the NHS at the moment - as you say, it's all politics.

I am very worried that you say you have written your suicide note & your plan is in place . Your exhaustion is 100% understandable but you need to ensure you tell your dh about the plan as he will be devastated if you do go through with it , & feel as if he's failed , whereas you always describe him as fighting your side . (Obviously I realise that you don't suicide to be the result for either of you , & have tried endlessly to access just a minimum level of help ).
I am racking my brain as to any organisation which might be able to advise / help you - the legal helpline of a disability organisation, I'd suggest , and an advocate from such a charity / vol group or from one of the general advocacy services now in many areas..

I remember you posting on the situation last year with your GP blocking your access to fertility treatment & how you could get no help from MH services , creating a vicious circle , & I have no idea how you have kept going through the hoops to try & get some therapy . I believe you didn't want to try to get your rights via legal advice / action , as this might create further complications for you , but wonder if you'd reconsider , as I feel you need lots of advice from medical / disability rights organisation /s & may have to go to a recommended solicitor & even your MP. :(.
(I replied on your thread back then but was very gushy & over emotional & I think I made it worse for you / alarmed you).

I haven't rushed off to report your post to MN HQ as would seem highly advisable , as a police officer knocking on your door to check if you need an ambulance etc would distress you further but am very concerned for you . Please come back briefly to say you'll take steps to keep from attemptng suicide until you see once again whether there is in fact any organisation that caan help you secure any percentage , as you put it so poignantly , of your care plan.

Some years ago I was in a situation of being refused any assessment / help by the MH services (didn't legally have to see me as not immediate suicide risk), then I too fell ill with a serious neurological condition , but had more mobility than you have atm & avoided hospital - felt too anxious to cope (!) as I was worried they might section me -and the CMHT didn't sbelieve my physical symptoms . I too really feel for you as Dh & I are still haunted by how how impossible it was to get help, but am so lucky I was that bit more fortunate physically so we were able to get through it . I was suicidal at the time & no one understood . Thoughts & prayers to you.

[cityhobgoblin]

PS keziah , I may have misunderstood but thought your dh was with you this afternoon - like lottieloulou , very worried for you if not .