Once a mental health patient, always a mental health patient

[GetDownYouWillFall]

Just wondering if this is true?

Has anyone been "taken off" the CMHT books?

I have been well for 2 years now. Feel like I am wasting their time really. But my CPN says "well, we like to keep you on, just in case..."

Surely it is unsustainable to keep all their patients indefinitely?

I feel like mental health services are a bit of a millstone round my neck now but I can't get rid of them!

From other NHS services you get discharged, does this happen in mental health?

[TotalChaos]

I got discharged after a few years being well.

[wannabeoriginal]

I was sectioned 14 years ago, had ECT, took lithium, anti psychotics as well as the ADs.
Told I would need medication for lfe etc. Was discharged form all services eight years ago medication free Haven't needed to see so much as a GP about my mental health in all that time. So it happened for me.

[GetDownYouWillFall]

Thanks both, that's fantastic encouraging news.

wannabe - I wasn't sectioned, but was hospitalised. Have finally got off the anti-psychotic (olanzapine), am now weaning myself off the lithium (down to 400mg now, from 800mg) and will tackle the AD last.

My psychiatrist said I will have to be on medication for the rest of my life, but I totally resist the idea.

That's so brilliant you have been medication free for 8 years!

How did you get off the pills, did you do it really slowly and were the psychiatrists supportive?

[asdx2]

It wasn't really planned that I'd come off them tbh I got unexpectedly pregnant which threw a spanner in the works tbh so had to come off them really quickly.
The psychiatrist was great and wanted to wean me off far slower than I wanted to but I more or less stopped them all over the course of a fortnight.
The psych was really worried but I wanted this baby so much and felt I was poisoning her with every pill.
I had a few side effects with stopping them so quickly because I was on high doses as well but they were mostly dizziness, nausea and a bit of shakiness.
The psych supported my wishes though even if he didn't fully agree with how I did it. He was surprised I wasn't floored by withdrawals but I think I was just focussed on the baby tbh.
Because I was sectioned after becoming psychotic with pnd the plan was a rapid reintroduction once dd was born.
I did take the AD's as soon as I had delivered but had developed an allergy to them and ended up with a very painful sunburn rash.
I needed to wait until that had gone before trying another one and so we decided I'd see how it went and start as soon as I needed to.
I actually never restarted because I never got pnd and psych discharged me with an open discharge on dd's first birthday.
I got a letter a couple of years after that saying I had been fully discharged and would need a new referral if ever I wanted to access their services again.
Been absolutely fine since then and feel totally different well without meds to well with meds.
Hope this helps

[TottWriter]

Sadly I don't think it can be true, even when it should be. My DP has depression, and missed several appointments because he couldn't face going. Sadly, he was in a bad place and didn't tell me or the doctors why, and his counsellors just wrote him off. When he got into a better place after our DS was born, he had to be re-referred, and the process started all over again. Mind you, his consultant still has him on the books. Though that could be because I phoned them up and explained the situation after he admitted to wandering around while he was supposed to be at an appointment on several occasions.

[angel2001]

my dh was discharged after being controlled for a year, we only found out when i needed to contact them as i thought he was slipping back. when i foned they told me he was discharged. he will be on sodium valperate andolanzapine for a long time but he is a loving fantatsic person now. took 10 years of me persuading them to change his drug form depot to something else . well now i can hinestly say it has worked. now just me to go.

[skihorse]

I am free from the "books". I haven't taken medication since 2005/6 (?) and I'm no more insane than anyone else.

My psych team will keep my files and have told me I can come back any time I need to - even if it's just for reassurance.

So right now, I'm "better" and I'm not sure if there will be a weakness for life, or maybe I'm just more sensitive to noticing any deterioration in mental health in myself.

[EffieB]

OP, I work in mental health and people do get discharged. I wonder a bit about your CPN saying they like to keep you on, just in case. If that's the actual reason it's no justification to keep you in the Service, if you are well enough and want to be discharged. In all honesty, it could be they have some worry that they've not been straight with you about- are they/ or anyone else someone you feel you could get an honest answer out of- do you have reviews with a Consultant (Psychiatrist) at any point- with CPN present? Or do you generally just see CPN? Maybe ask about under what criteria they'd discharge you- frankly if your mental health's been stable for 2 years and you're coming off meds with no ill effects you're doing great!

If you need the Service at any point in the future you can be re-referred. If you're in a crisis you'll be seen sooner rather than later, if it's more routine you will end up waiting in all probability.

But no mental health services are a service like anything else, if you don't need it and you don't want it you shouldn't have to have it! I think it must be really disheartening for folk when you're feeling so much better in yourself but still having to traipse up to appts- I think we do people a diservice by keeping them too long in Services.

Good luck!

[CheekyVimtoGal]

I started to see a CPN in April 2008, she signed me off in October 2008 and said i needed to stay on my meds until October2009. In Feb 2009 i fell pregnant and the thought of another case of PND and the feelings i felt before scared the life out of me. I know i wouldnt have been able to deal with another baby, i would have had a 3 year old, a 1 and half and a newborn. I wouldnt have been able to cope and keep sane at the same time.

I self referred myself via the Humber Mental Health website and within 24 hours my CPN was knocking on my door, she said she had got a request to come to see me ASAP. I was shocked at home efficient they were. I was signed off in April 2009 and got myself a full time job working 40 hours per week in June. I changed my hours to 24 in November as i felt like i was loosing the bond with my children as they were with the CM all day 4 days a week. I have since quit my job and now become a full time mum at home for the time being. I feel as if i jumped into a full time stressful position too early.

I was in Tescos yesterday and bumped into my old CPN she said i look better than i did last time she saw me and asked how i was. I told her that i had come off my tablets alone without GPs help and i know i shouldnt have, but i thought having a job would help me gain my confidence back and my PND would dissapear - WRONG!!

She said if i feel like i am slipping i had to go to my GP and tell them ASAP and if need be get referred back to her.

I am hoping that wont happen, Things seem to be looking up for us as a family finally after 3 years of shit and now my DH has a fantastic new job he is strating next week

[GetDownYouWillFall]

Thanks everyone so much for your posts so far. It's great to hear positive outcomes after being in the "mental health system".

EffieB thanks for what you said - it's useful to get perspective from someone who works in the mental health services. It does worry me a bit that maybe there is "something they're not telling me" - but also I know within myself that I feel well and am fine. Also that I had 27 years without any mental health problem, and then just 3 months of acute episode with PND, so I believe I can be "better" and will not be on medication for the rest of my life.

My psychiatrist, however, seems to have very little experience of PND, treating it like other mental health conditions which can be life-long, whereas I believe in my case it was largely hormonal and totally related to the experience of childbirth. As a result he seems to be of the view that you will be on medication forever because your "illness" is somehow inbuilt in you and is very hard to convince of the benefits of coming off medication, even the fact I have told him I would like another child doesn't seem to make him more supportive of coming off medication.

I did wonder whether it was the fact I am on lithium that meant I had to stay in the service, or can this be managed under a GP alone?

You are exactly right it can be very disheartening having to trudge to appointments where you feel patronised, belittled and made to feel in the "sickness role" when the rest of the time you just get on and enjoy life. Without question I come out of those appointments feeling worse than I did when I went in. I feel like a mental patient, because I am treated like one. The rest of the time I am a normal everyday person with a good job, a nice family and a happy satisfying life.

I would really like to discharge myself but I know that would not be advisable and would probably ring massive alarm bells to the psychiatrist. So I feel I am stuck with it really, and dutifully go along to my appointments every 3 months.

[MitchyInge]

You can be on li and managed in primary care, serum levels monitored by gp etc

it was a big deal for me to get discharged to gp, as had never sought any treatment from anyone and it was always unsolicited and intrusive. Now I have fewer qualms and do dip in and out of the services as required over time.

[EffieB]

OP you sound a sensible and quite sage judge of the vulnerabilities of people you are receiving a service from! Perhaps at next appt with GP, ask if they monitor people on lithium, explain what you've said to us about feeling much better and wondering whether you need this degree of Service at this point. Presumably your GP will say yes (they'll have people 100 times poorlier than you that they're desperately trying to get the CMHT to work with!), and then at next Psych appt you can ask more about what the criteria would be under which you would be discharged. If they highlight the lithium, you can clarify that you've already addressed this with your GP and they'd be happy to monitor you!

I think you're very sensible, if you've got a super cautious psychiatrist then they might get a bit funny about you discharging yourself (although you've every right too). Less hassle for you to try and convince them it was their idea in the first place!

Are you being copied in to letters from your Psych to your GP about your treatment plan? Ideally you should be, although I think this is far from standard.

[GetDownYouWillFall]

Thanks EffieB that is good advice. Yes, I get copied into the letters from the psych to the GP. Unfortunately they are not very reflective of how I actually am. In one they said I was "labile" (up and down) which I'm not, in the last one they said they discussed my anxiety - this despite me saying how good I've been feeling lately. I really do despair.

I've got another appointment tomorrow. Thankfully my DH is coming with me and he is always good for moral support.

Thanks too MitchyInge it's great to hear you can be monitored on lithium through the GP. I will try and see the GP and suggest that I could be monitored through them in the future.

I do feel bad that I am in some way "taking up a place" in CMHT that could be better used by someone else. The NHS seems crazy to me sometimes, though of course it is a wonderful service too, compared to much of the world.

I just look forward to being treated like a "normal" human being again and to having my wishes respected.

[EffieB]

OP don't worry about taking up a space, this is their responsiblity not yours, and if the CMHT are being poor at discharging people who have to all intents and purposes recovered then they'll just have to deal with it! Some Psych's are awful at discharging people, i really hope you get somewhere with it.

I would ask them what the plan is for your (future) discharge- you could discuss the progress you've already made and what further progress they would want to see before they could discharge you. If you get any sort of firm answer to this then I would ask 'oh, would you mind putting that in the letter to the GP I think that would be helpful when I see them next'. Once you have something in writing it's not so slippy. It also gives you something at some future date, if you still haven't been discharged, and decide you want to discharge yourself, to put (in writing) something like 'as discussed at our meeting on X date, you outlined the steps towards discharge I would need to take. As I've now met these, and my GP is happy to monitor my lithium, I feel happy to currently receive support for my mental health through my GP'.

[GetDownYouWillFall]

Thanks EffieB I had my appointment with the psychiatrist this morning. Thankfully it went ok and I didn?t come away with that awful sinking feeling that I have had after previous appointments. I was quite nervous going into it because I had reduced my lithium by another increment and I thought she would be angry with me, but she was actually very reasonable and I think she respected the fact that I was doing it carefully and that I am taking some responsibility for my well-being and not just doing it with a carefree ?stuff you? kind of attitude.

I plan to get off my lithium and then start tackling the AD I am on (mirtazapine) but I am nervous of that one because I believe it really helps my sleep (I suffered terribly with insomnia before). I am only on 15mg though, so hopefully it won?t be too hard to come off. The psychiatrist thinks it should be ok to stay on the AD if I do get pregnant but she would like me to definitely be off the lithium. Ideally I would like to be off everything. Any thoughts of harming the baby would multiply my anxiety many times over I am sure.

In terms of getting discharged, realistically I don?t think this is going to happen just yet ? because I have said I would like to try for another baby, and my ?episode? was very severe requiring hospitalisation and was directly related to childbirth, I think they will probably keep me on their books as long as another baby is ?on the cards?. It?s good to know that they do discharge people eventually though. Hopefully I will not get as bad second time round.

[arcadia96]

GDYWF glad it went well today. It's nice when it feels like professionals are respecting your own judgement rather than dictating to you.

I have seen a lot of your posts on here (including to me) and am really struck by your warmth, kindness, and good sense, so I really hope that everything works out well for you. Also to say thank you for the advice you have given me on here, it has really been helping me to get through a difficult time.

[GetDownYouWillFall]

Thank you so much arcadia96 that really is very kind!

I feel I am well on the road to recovery and just want to encourage you really. Much of your experience seems similar to what I went through. I thought I was alone, but it's so helpful to hear that others experienced a similar thing to me following the birth of a child.

How are you doing now, how is the sleep?

Hope you are doing well. x