To refuse this appointment? (quick!)

[WordsAreNoUseAtAll]

Sigh. Long long story, boiling down to: I have a severe mental illness, which has landed me in hospital a few times. Because I have been known to lose insight and get very ill very quickly I need a cpn that I can trust, and until now I have had one. However, said good cpn (we will call her A) is on the early intervention team, so I have now been with her far too long and have to transfer to "normal" community mental health. With me so far?

So, with community mental health I need a cpn. Here is where it gets more annoying. I kind of knew I was being transferred, but had been assured that it would be gradual, I would be consulted all the way, etc. Then, out of the blue, a month after my last hospital discharge, a random cpn (B) turned up at my door. I was confused, but let her in, and she didn't know I had kids, what my diagnosis is, even that I had been in hospital.

That has led to problem after problem. She is nigh on impossible to contact - doesn't answer her phone, doesn't return messages left at the office. She cancelled two appointments in a row AFTER the appointment time (one was an actual emergency, fair enough, but the other was because her car had been broken for two days) then I managed to get hold of her and she said she was arranging for me, her and CPN A to meet to arrange handing over my care. Again, half an hour after the appointment start time (for which I was really nervous as it was to basically decide how much support I get from now on) I managed to get hold of her on the phone and she casually said "oh, cpn A can't make it, so I changed the appointment" I asked why she hadn't told me "well, I'm telling you now, aren't I?" I asked how long she had known "well, I knew on Thursday (this was now Tuesday) but I had a long weekend off so couldn't tell you before now... I do have a private life you know"

SHE HAS A PRIVATE LIFE? THIS IS MY BLOODY LIFE.

Anyhow, I have seen her twice since, once where she magically found time to turn up to a doctors appointment with me when I reminded her of the date and time two days before (and at which she basically tried to make out that she had been working closely with me for a while) and once for a joint appointment with cpn A. At which they both told me that I should be happy not working as I get to spend time at home and they would be SAHMs if they could. I'm not a bloody SAHM, because I have to send my kids to nursery because I am too ill to look after them full time. Even if I had them at home, I should still be encouraged to study for a few hours and do two mornings in a charity shop, surely.

I also missed a doctor appointment (they are like gold dust with up to 3 months wait time for non emergencies, but the only time I can get my medication changed and so on) because I had lost the letter and asked her TWO MONTHS in advance to tell me the date and time. Despite my ringing and texting her and cpn A twice weekly, I only found out on the friday after the Wednesday appointment, through cpn A who thought that cpn B had told me.

A couple of weeks ago, cpn A replied to one of my texts asking for info with "we have arranged an appointment for the 29th" but then didn't reply when I asked what time. Yesterday I texted her again asking what time and she replied that cpn B was meant to have told me, and it is 10am tomorrow, which is when I am meant to be working in a charity shop as part of my "get out of the house and talk to people" thing.

Confused yet? I am. This is what I am relying on to help me with my severe illness. Not much help, is it? I almost feel like they are trying to get rid of me.

AIBU to just tell them that I have a private life and can't be expected to be at their beck and call? I'm relatively well atm, but what on earth will happen if I get ill?

Or should I just suck it up and accept being a patient and stop these silly ideas of not being at home all the time?

I need to cancel the shop shift asap if I am going to - what do people think?

Cancel the shop shift - you need the appointment.

Deal with the rest later.

I agree with cancelling the shop shift.

Working there is beneficial, but the appointment is crucial.

I would also then raise your concerns with the GP. The last thing you need is the added stress and uncertainty that this situation is going to create.

Good luck.

GPs tend to not want anything to do with MH once you are under a mental doctor and community team though.

Agree with Bathsheba. Cancel shift. Yes, this is your life so you must show them how important these appointments are to you by going when one is available, however frustrating their attitude is.

Is there an advocacy service for people with severe mental illnesses? It sounds like you aren't being treated very fairly - I'm anxious just from reading your OP!

Is your GP sympathetic? Creating a stable environment should be important, shouldn't it?!

I think you have been vry fortunate to have someone in the early intervantion team - I suspec tthey have a lot more funding and a far smaller case load per cpn.

You have discovered that the "normal" team doesn't - no cover for example when someone is on holiday for a long weekend...

certainly make a noise about their lack of communication but I do think its down to money and cuts...

Keep this appointment.
Cancel shop shift.
Make appointment to see GP to raise concerns.

Oh, I didn't realise that. Is there a team leader or someone you can raise this with then? Or the mental doctor?

Other people might not have an issue with this CPN but it is possible that the two of you won't 'gel' and, to my mind, you need to have trust and confidence in the person who is allocated to support you.

Ok, raise concerns with community team leader instead of GP. Make an appointment.

go to appointment. I would explain that you need them to be contactable and to let you know about appointments and such. I would also request a change of workers, clearly new worker is an arse who cannot sort herself out and you need her to be clear about the appointmnets and outomes.

Appointments are always at my house, and last time they told me that I shouldn't be worrying about studying (I am doing OU and it is very very important to me as being a bit clever is all I have left of my personal identity, and is also a reassurance after years of being spoken down to and given colouring in as a suitable amusement etc - I kid you not) and I should do more house work because when they arrived DH was folding some laundry while I was reading a uni book. Apparently DH has a (part time) job and studies as well, so I should give him priority and just make sure the house and kids are nice for him and focus on being a good wife and mother instead of "over stretching" myself with books and going into town to volunteer at the charity bookshop for a charity I feel strongly about where people who I can have an interesting conversation with work, instead of at the old lady shop in the village. I have nothing against the old lady shop, but I just wouldn't choose to work there if there was an alternative.

I'm nearly crying just typing this. I felt like I was being attacked - they wouldn't listen to me and just kept saying that I couldn't use being ill as an "excuse" to make DH do housework (he only does his fair share, btw, and I do the vast majority of the childcare, household admin etc) and that I would never get better if I sat around reading books instead of going and doing the supermarket shop in person instead of online etc.

The thing is, I keep trying to tell myself I am being paranoid, but cpn A knows full well that I am a huge feminist, she knows that DH goes to the pub far too much and leaves me with the kids (well, he is actually loads better atm - it has been a problem in the past though) so it is like she is trying to piss me off. Like she is trying to get me to accept cpn B so she can take me off her books. She has gone from being really nice to being horrible - I don't trust any of them now.

Cancel the shift, go to the appointment, raise a stink.

I know how hard that can be, to raise a stink, but you really must advocate for yourself here.

Everyone has a boss. Find out their's and make a formal complaint. Get DH to help if you don't feel strong enough to do it yourself.

As you said, you're not ill at the moment, but you need better care than this in case you do get ill again.

And good for you on doing the charity work and an OU course!

I would definitely cancel shop appointment and see your GP.

And definitely contact mental health advocacy services at address below...they are brilliant at things like this.

[email protected]

I agree that despite your (justified) annoyance, it would be good to attend the appointment. After that I think you need to either raise your concerns about the care you are recieving (perhaps with the help of rethink as suggested above).

In case it wasn't clear from the other responses you have recieved. You are definately in the right about your partner doing his fair share of the household/childcare tasks. You know best whether your studies and time in the charity shop are beneficial to your self-esteem and health or whether they are increasing the stress in your life. It's their job to support you in achieving the life that you want to live, not to judge you about your goals.

My own experience with mental health services has been disappointing. I apparently had a miraculous improvement in my mental health when my CPN moved posts. Although I had just had a review where we agreed to 12 further sessions of CBT and ongoing weekly graduated exposure (for agoraphobia) with my support worker. When she left, her replacement wasn't going to be CBT trained so she referred me to group therapy. I got 6 group therapy sessions and no support worker. At the end of these I was told I didn't need futher support.

Personally, I've had a problem with mental health services since I was first referred. You get a letter through the door (without an appointment) asking you to contact them within 2 weeks otherwise they'll assume you no longer need their services. I doubt that happens if you are referred to oncology with a potentially cancerous lump. They wouldn't assume that it had disappeared.

Part of my condition is that I found it difficult to make phonecalls/leave the house to post letters/speak to people/make arrangements etc. Luckily, I have a supportive DH who was able to do this for me, but how many people never get help because they can't face picking up the phone to organise an appointment? It seems like they just want to keep the number of people on their books as low as possible.

I'm sure if someone who genuinely wasn't happy with the referral/had started feeling better would be in a much better position to cancel an appointment than someone who does need help but doesn't feel able to ask for it again.

God, I am horrified at anyone having to deal with Mental Health, just reading this. I have a couple of RL friends who have told me horror stories.

Awful. Perhaps MN should help to campaign for those that are truly vulnerable in our society like this.

Everything you've told us you should tell to whoever it is that is superior to these cpns. I'm sorry, I know next to nothing about MH support, but what you wrote in your OP sounds clear enough to me, so it should to someone who can do something about it.

Definatley go to the appointment tomorrow, then ring the mental health team and ask them for a copy of their formal complaints procedure to complain about your dismal and wrong treatment by these cpn's.

Obviously go to the appointment and then ask for another CPN. I have done this in the past with both a consultant psychiatrist (twice - I'm high maintenance!) and a CPN. With the first psychiatrist I did have to travel further afield but it was well worth it. I now see a lovely psychiatrist and have a social worker instead of a CPN because I refused to see the appallingly bad CPN ever again.

You don't have to see these people if they're actually making your mental health worse. Surely there's an alternative?

This sounds awful OP. Write it all down and lodge a formal complaint. I'm not sure if copying in your MP would help. Anyone else know?

Contact PAL's and ask for help with making a complaint and put a written request in writing to change your CPN due to feeling that she is not able or willing to understand or meet your needs - good luck and dont stand for being treated in such a shoddy manner

Well, last time I saw them I asked what would happen if I discharged myself from mental health services entirely. They said that I am not ill enough at the moment for them to chase me, so it is my choice, the GP needs to say they are ok with me having them as first port of call, and I will have to be referred back for changes of medication, relapses etc. I would also lose use of crisis team, and I would get a randomly assigned new key person if I relapse, who could be anyone, and they wouldn't know my "normal" so it could be more difficult to get out of hospital etc.

I will say, before cpn A started being an arse, she was really good with the hospital. They were saying I was grandiose and withdrawn (the reading thing again - apparently reading big books and the Guardian instead of watching Jeremy Kyle is a symptom now ) and the cpn vouched for me that I am always like that. :) It was brilliant - I went awol from ground leave to go home and get my smart clothes, and me, DH and cpn A turned up to the next review on the ward. 3 against 6 feels at least slightly more balanced, and she really stood up for me.

I have no real advice but agree that you deserve better. I think you should complain about B but I'd be inclined to keep quiet about your recent problems with A. It doesn't sound like she's likely to be directly involved with your care again, so it's probably not worth complaining about her. When you complain about B, it might be worth approaching it from a personality clash/lack of confidence rather than focussing on the ideological conflicts. I think her lack of communication is unacceptable, but her comments about SAHM etc probably not worth challenging.

Good luck with it, and I hope it gets better soon.

Get to this appointment and write down your concerns. After the meeting write down their response and get it to their team lead, your GP and make use of any advocacy services available.

Cpn B is unhelpful and is complicating your life rather than helping. While you are well you unfortunately need to use as much energy as you can getting the right help in place for when you aren't.

Keep the appointment and use it to air your grievances. Make sure you leave the meeting with a clear line of communication with one cpn, preferably A, until a suitable cmht cpn can be found to manage your case. As you are well at the mo, use the time to be as assertive as you can to get appropriate care from a competent person. Get cpn B off your case. If they can't agree to that then ask who is in charge of coordinating the allocations (ie who is their boss) and take it up with them.

Good luck