Help needed with unsupportive cpn and mental health team generally

[OCDpanic]

Feeling very let down, scared and angry.

I have severe ocd to point it governs absolutely everything I do and has made me housebound for over a year.

In last 6-12 months I've felt cpn becoming increasingly impatient, unsupportive and dismissive. Only ever wants to discuss meds and in last few months in particular is in a rush to end appointments/phone calls to the point of being rude.

I was speaking to someone with local knowledge of the team who deals with them in a professional capacity and they too were saying the service is seriously deteriorating, that they are understaffed and under pressure - which while I appreciate that's stressful it seems unprofessional to me to blatantly place that burden of worry on patients.

I feel I need to speak to cpns line manager and discuss how to move forward in a way that means I get that treatment and support I need which at the moment I'm not.

I'm getting maybe 30-45 mins of her time directly per month.

Today she basically said if I don't do certain things - things which are incredibly stressful and distressing - before my next scheduled appointment then I may be at risk of being discharged by the service.

That feels hugely manipulative even bullying to me and certainly not helpful with how low I am at the moment.

I don't know whether to try gp too - although they tend to not go against the mh teams edicts.

I just want them to take me seriously and help me feel confident to take the meds and do whatever else is necessary to try and even get a little better, which they seem unwilling or unable to do.

I'm feeling so let down and I want to address this.

At first I wanted to call cpns boss and just let rip but I held off as I knew that wouldn't be useful but I'm thoroughly sick of getting no support!

I'm even considering going private but I'm worried I don't have the information to choose the right person/service. Which could make matters much worse.

Anyone else have same? were you able to get a satisfactory response from the mh team and get things sorted?

Kindly OP, if you've been receiving a service from the CPN for at least a year and nothing has improved then maybe (s)he thinks that you should strongly consider medication. It sounds as though you are reluctant to do so.
Realistically services are at breaking point in most of the country, and the CPN probably is following guidance, if you can't engage with the service then is there any value to you using it?

Again, with kindness, are you truly not getting support, or are you not being told what you want to hear? I understand what you say about you feeling distressed by what you’re being asked to do, but that may be part of the therapy-facing your fears?
The most I’d be looking to do just now is asking if there’s another CPN who you may gel better with.

Like the rest of the NHS, mental health services are on the point of meltdown, amd it’s often not the most well people who are discharged, but the least unwell. You do need to engage with the service or you may well be discharged

Yes, it is often the case that people who have not progressed with the therapy are stepped down to monitoring only. The best treatment, as I am sure you know, is CBT (exposure and response prevention for OCD) with or without medication. Yes it is really hard, and to get more therapeutic support (when resources are very stretched), you will need to demonstrate action and motivation by taking those steps. Therapy is getting very limited. CAMHS patients who have had some therapy with no response and get to 18 are not offered it again in adult services. I am not saying that’s how it should be, because I think there should be more help out there - but it’s still not something they can do to you or for you. I would try to find a support group or self-help resources, it can get better, OCD is lying about what will happen if you do these things. Good luck with things.

I'm truly not getting support. I am taking meds, I'm not opposed to taking them at all, I've had some very good experiences with other meds that I wish I could take now as they worked really well.

It's more that I've been saying for over 6 months that the mirtazipine has helped a bit with the depression side but anxiety is worse, they'll neither let me come off it nor increase the dose.

I've genuinely had some serious problems with side effects - extreme diarrhoea (to point of dehydration), very blurred vision, extreme dizziness and fainting, vomiting etc - that make my anxiety much worse as I'm germophobic and so needing to use the toilet more is something that massively increases my anxiety.

After several months of me begging for additional meds to help or a change to what I was on in some way I was prescribed pregabalin, when I looked into it I wasn't happy to take it with the potential side effects and many users saying it made their anxiety worse.

Took another several months until I could even get them to consider adjusting the meds again and they gave me 2 possibles to consider and I settled on quetiapine, but I have a few concerns about this too but whenever I ask questions about it the cpn only ever mentions the positives, never the negatives and if I raise them she's very dismissive when all I'm wanting to do is discuss them for a little reassurance and also to perhaps consider ways to mitigate any possible side effects issues.

I'm talking I'm asking really simple basic things like is it better to take with food or on empty stomach, what time to take etc it's incredibly frustrating.

"I understand what you say about you feeling distressed by what you’re being asked to do, but that may be part of the therapy-facing your fears?" Except the cpn has specifically stated she's not qualified to do this and the things I'm being expected to do are not small steps, they're 0-60mph type suggestions with no mind for the possibility of setting me back even further when I'm already the most ill I've ever been.

I've done exposure and response therapy before, a few times, it is not meant to be done like this.

I've also done cbt several times, it doesn't work for me and contrary to supposed expert opinion there's a significant number of ocd sufferers whom it doesn't work for, especially if it's done by someone without real expertise in ocd.

I had real success and significant improvement with alternative therapy treatments with a great therapist, unfortunately he's since moved out of my area.

That's another thing that happened today cpn made out I'd completely vetoed any therapy from psychology which is absolutely not true.

I don't feel I can trust her any more. Which is bad enough in itself - what's worse is I think there's a real possibility she's misrepresented me and my case to the team who've never met me and of course they'll take her word over mine.

Something just feels very "off" about how she's being altogether. She's rushing through appointments and calls, mixing up info about me with other patients info, seemingly misremembering things...

She was never the most organised, bit scatterbrained inc things like turning up on wrong day/time for appointments (I always put them in my phone calendar at the time that appointment was made so I knew it wasn't me, plus I wasn't having any problems with appointments with others, I started asking her to text me to confirm and then it stopped being an issue), forgetting stuff I'd told her major things not minutiae, forgetting to turn on her work phone, a few times she "returned" calls to me - but she'd already returned the calls and had forgotten, I'm talking the same day sometimes just an hour or so between calls.

But because I know it's a stressful job I didn't make too much of it but such incidents are increasing and to be honest I'm fed up of being treated like a burden and a nuisance rather than a patient who needs and deserves empathy and support.

Basically she's acting like I've let her down personally.

As for "not improving with the therapy given" I'm not getting any therapy, it's basically her coming round, asking how things are, then when I start to tell her or ask questions she shuts that down and starts on hard sell of meds.

I dont agree with everyones unsympathetic responses. OP I do know what you mean. You have to be your own advocate. As an example if you don't agree with the 60mph step, propose what you can do as a small step. Take leadership of the change from them, with them supporting you. In terms of medication advice-when to take etc. you can ask your GP about this. I believe you do have a right to complain and they may change your cpn. It will always be pot luck on whether they are the right fit and going private you would have more choice and control over that. I also believe you need proper therapy from the sounds of it - I am not sure that is what cpn's do.

Thanks Funday

I have made suggestions of smaller steps but apparently they're not good enough. She won't even discuss them with me.

Re GP - they aren't very familiar with the meds being used this way and tell me to ask mh team that's if I even get through to them it's murder getting an appointment

I've been told the cpns don't do therapy fair enough, she's been saying for ages I can't access psychology dept input due to being housebound as they don't do home visits but due to a few on here recently suggesting, I asked about telephone appointments (which I thought wasn't available on Nhs) cpn basically "told me off" for not asking about this sooner (that annoyed me - surely if it's a possibility SHE could have checked and suggested it sooner?) says she can't guarantee but will ask and see if it's possible.

It's like wading through treacle!

I've had the idea this morning to check with my pharmacy when the meds were first prescribed as she's making out it wasn't months between changes being made.

Turns out I've been on the "new" anti depressants almost a year, the first anti anxiety med I asked for after 8 weeks on the anti ds I didn't get prescribed until 4 months later and the 2nd anti anxiety med 6 months after that

So I'm not bloody imagining that it's taking months to get changes made.

And while I'm waiting for these changes I'm getting more ill!

I'm speaking with an advocacy service and the person I'm dealing with seems switched on and familiar with this particular mh team. I gather from her and also comments from people I know locally who are also under them that in the past 6-12 months the service has really gone downhill. This is causing problems not only for patients but also police, social services etc

I'm wondering if it's not just cuts/under staffing but perhaps a new "boss" who's making changes that aren't working? There seems to have been a major attitude shift that even the receptionists at the main office seem to be reacting to, they're the same staff as has been there the whole time I've been under them about 10 years on and off and they're also being far more abrupt in their manner. I can sense the tension if that makes sense?

Somethings not right.

Hopefully bumping again

Feeling stuck and abandoned and like I need to speak to cpn or her manager but unsure what to say to sort things. Can't get through to advocacy service but will keep trying.

So fed up of this

have spoken to cpn don't feel it went well at all. Several "non apologies" 'sorry you think that' 'sorry you feel that way' while also genuinely sounding as if she was talking to me through gritted teeth.

She was very vague about what she's planning to say at meeting and even more vague about possible outcomes which has me incredibly worried as I am very concerned they're going to say I'm "not engaging" and that therefore they can no longer support me when that is absolutely not the case.

I'm concerned I may be misrepresented and info about me and how I've reacted/responded to suggestions inaccurately reported - and it's my word against hers!

Feel powerless, abandoned and ignored.

Please if anyone can advise at all I really need help here.

What I feared has happened. Been discharged with no clear reason given on phone call, says she's sending me a letter explaining I suspect as didn't have guts to say on phone.

Been referred to psychology (which I have been asking for her to do for about a year! Until now she said it wasn't possible in my circumstances)

I feel really badly let down and mistreated.

Hi, I’ve just joined mumsnet and saw your post. I emphatise entirely with your situation as a fellow “service user “. I don’t have a cpn at the moment but when I did, I experienced similar. She was the most scatty and disorganised person I have ever met. Somehow it always ended up being my fault though as apparently I had misconstrued the situation.
Currently I’m in the process of being re-evaluated by the senior team as to whether I will be allowed back under the cmht, I don’t hold much hope.
It is not you, it is them and the system. You haven’t done anything wrong. As you say , your cpn is probably very busy, but that is not your fault. You deserve the same care and concern as everyone else.
This is actually a political issue and reflection on the underinvestment in the NHS and mental health service in particular.
You are not in anyway at fault and your cpn is acting unprofessionally if she makes you feel that way.
If you have a local Mind office it may be helpful to contact them for advice and support as they work actively to counter mental health discrimination at all levels.
I hope you have an ok day today and hopefully these issues will be resolved soon for you.

Thank you for your support. I don't have access to mind as I'm in Scotland.

I totally agree it's also a political issue but at the moment it feels very personal and very much designed to disempower me.

I'm currently awaiting a call back from a local service that's supposed to be able to help but like yourself I'm not feeling hopeful.

I've spoken with people today about what to do next. How did you get to the point you're at now with the senior team evaluating?

I'm genuinely concerned that there is a real possibility that my situation has been misrepresented to the rest of the team most of who have never even spoken to me much less met me and certainly don't know me.

I'm feeling extremely let down and ignored.

Sorry, I didn’t know that Mind doesn’t exist in Scotland. Are there any other mental health advocacy services that you could turn to?
I understand fully that what you are experiencing feels very personal and is upsetting to you. I don’t think the services get this though. To them we are ‘ a case’ one of many, individuality lost somewhere between the rhetoric of empowering practice and the reality of overwhelming caseloads. Not helpful to the patient in the slightest.
The fact that treatment or the lack of it has been based on the (deliberate?) misjudgment of one person has been an issue for me too. My previous cpn often deliberately twisted what I had said and decision about my care was based on her say so by others in the team whom I had never met. Or met once in passing while in acute crisis, sometimes years ago.
I have detested this and been vocal about it, only to be labelled as ‘angry and blaming’ and my reaction being dismissed as a part of my ‘condition ‘.
One of the main problems in mental health practice is the “ them and us” culture of thinking by the practitioners and the power imbalance this creates. Them, the mad and untrustworthy patients and us, the staff, who uphold sanity and truth. ( I worked in mental health and sadly know what it is really like from the inside).
My review situation arose from my GP re-referring me to the mental health team. I have a clause in my discharge care plan which stipulates that a re-admission requires the decision of the senior team. An individual psychiatrist can’t admit based on their individual view alone. Sadly, most of the senior team are prejudiced and biased, based on the misinformation that has been recorded about me.
I will find out about the result of the meeting in due course, Basically whether I will have a new care coordinator and am back under the “tender” care of the cmht.
I sorry, if my previous post implied that you aren’t important as an individual. I did not mean that at all, possibly just my clumsy choice of words, sorry. You are important and your concerns and feelings are too. It’s just that the individual tends to “disappear “ in the system that is overwhelmed.
I know from my own experience that it feels very personal, mental health is very personal in a way that other health issues are not.
What you might try, is to speak to the team leader of your cpn and explain what has happened and the impact on your wellbeing. If this doesn’t bring about a satisfactory resolution, take it up to the service manager.

Yes I feel it's highly likely what's really been happening has been not fully and truthfully been told to the rest of the team - none of them have even spoken to me! So they do only have the cpns word which is as you say often taken as correct because she's not "mad".

I wasn't criticising you re individual aspect but the system.

I've been under some kind of care for almost 15 years now and never really been well or received good continuous treatment.

I've been discharged far too early on several occasions with no care plan or procedures in place for when i was becoming more ill (which neither I nor even those close to me recognise straight away. I feel there should be a longer more phased procedure to discharging) this was criticised by the cpn prior to this one who was great but sadly is now retired.

I've been dismissed, ignored, gaslit, stonewalled and bullied on several occasions.

I'm at my most unwell and feel like I have no support from anyone instead everyone is blaming me and saying I'm not trying hard enough when even really basic things like drinking or eating are taking all my strength right now. I'm barely sleeping and I'm crying almost all the time. Which is actually really unusual for me. I can normally at least keep it together on the phone etc

I have several times almost called and asked to speak to her line manager but because of the crying and how angry I feel I'm worried I may not come across well.

Advocacy services are very slow moving and honestly I want to know what the fuck is going on and what she's bloody said about me now! Because at this point I'm fairly certain she's outright lied about a few things. Crucial things too.

I'm pissed off to be honest!

Are you the same person as the OP?

Sorry yes name change fail but fuck it.

I need help and support and not only am I not getting it I'm being stonewalled in trying to find out why.

Hi OP,
I’m sorry that I have no helpful advice but wanted to say I’ve been in a similar position to you - not the same condition but same type of treatment. I was discharged for not responding to treatment for anorexia because they were offering me CBT which required my BMI to be at a certain level before I was able to receive it but because I couldn’t eat to put the weight on, they called me lazy, disengaged and a waste of time (their actual words) and discharged me.
The only way I found help was to pay for private care. It saddens me so much that good help is only available to those who can afford it. It is absolutely not the way it should be.
Regardless of the stress placed on the CPN , it takes nothing to be kind. It takes the same amount of time to make a supportive comment as it does a crushing one.

I feel for you OP. I really do.
Is there any way you can afford private help- even short term just to give you a starting point?

I'm so sorry you've been through something very similar. It's not acceptable at all.

"It takes the same amount of time to make a supportive comment as it does a crushing one" this comment is spot on. And get the crushing comment really hampers our recovery so in terms of time it actually costs them time/resources of they do this.

I may be able to afford private care with help from a relative who has offered an interest free pay back when I can arrangement for this but I'd feel guilty accepting that help even though they can well afford it

But I'm now feeling so desperate I am considering. My difficult is that even private treatment for OCD seems to use the same bloody treatments as the Nhs! Namely cbt which I've honestly found (and the therapists agreed) was making me worse!

There seems to be a real tunnel vision among all professionals in health care in this country about treatment for OCD that only one model works. I don't understand that at all when there's even several different types of OCD and it manifests in numerous different ways. So why would only one treatment work?

Anorexia is not something I've ever had to struggle with but apparently is often comorbid with OCD to the point that even when I was being told that for physical health reasons I needed to lose weight I am also told I'm not allowed to diet when I'm very unwell.

I think there are certain competitive elements to OCD and anorexia that mean that the challenge to ones self to control intake is hard to resist and of course OCD is all about control, wanting to know things are safe and reliable and within our control - which of course is ridiculous as life isn't like that but then that's why we crave the control, because our lives feel out of control. Does that even make sense? I hope so and that you realise I'm not trying to be flip but explain that while I've never suffered myself I can well see how easily I could succumb.

It's also why I won't smoke, drink or take recreational drugs as I'm extremely aware of how easy it is for OCD sufferers to become addicts too.

Even prescription meds that have addictive issues I'm wary of.

I really feel for you. I lost my cpn after being constantly told I never would because I am high risk. Took many overdoses the last one left me in intensive care and next to death. Still no help. Just took another where I stopped breathing and had a bad fit. I feel like no one gives a crap. Maybe they hope next one will work and then one less to have on their books. I miss my cpn deeply. They tell me to ring if I need help. Never in 10 year's have I been able to. Why do they not understand I can't call a stranger.