Help! Abandoned by my cpn

[OCDpanic]

I have very severe OCD as per username.

Recently I've been feeling cpn hasn't been supportive and looking for an excuse to discharge me and today I have been told that is exactly what has happened.

I am at my most ill and yet my requests and ideas were not being listened to.

Basically been told it's because I wasn't "progressing" yet I feel this is because she wasn't doing as needed.

Anyone else been in this position? Knows what I can do to complain/get the support I need?

I am desperate.

I have no idea what the correct procedure would be here, but my DD has severe OCD (and autism) so I understand how difficult things must be for you. Her OT discharged her, too.

I should think going back to your GP would be your next move.

Discharging someone who needs help for not making progress is ridiculous; it means the treatment is inadequate and needs changing, not that the patient needs ditching!

Also, should have said, maybe you should contact PALS.

Thank you so much for replying and understanding.

That's exactly how I feel, that my being unwell and indeed getting worse isn't my fault or certainly not all my fault.

I have been asking for certain things for almost a year and for several months have been asking for certain issues to be taken into consideration.

One of these is finally being addressed (input from psychology dept) but I was falsely told until now that this would not be possible unless I did certain things.

I'm so angry and so scared right now.

I've spoken to pals who've taken my details and advised how I could make a formal complaint if I wish but to be honest that worries me too as there's an issue where I live where patients who make formal complaints are sort of "blacklisted"?

I think there is a distinct possibility that the cpn has (at best from incompetence/misunderstanding at worst I have an idea why based on conversation with pals) misrepresented me to the team who decide these things. I think she wanted me off her caseload and she's now achieved that.

But instead of providing me with another cpn I've been discharged from that aspect of the service.

I would very much like to know exactly what she's said about me as I know for a fact she's given wrong information about me to people before. At the time I put that down to misunderstanding now I don't know what to think!

Having to wait until later today to speak to someone else about all this who I spoke to last week and will hopefully be able to help me get the support I need which I really feel I haven't been getting for quite some time now.

Feeling so extremely vulnerable and unsupported.

Were you able to get better support?

Well, DD didn’t like seeing her OT anyway, as she always felt a bit patronised! She still sees the child psychiatrist here and there, but not often and he’s not too interested. Our GPs are great, though.

We haven’t had the adult experience, or CPN involvement. It sounds awful. Dreading this for when she’s an adult!

What has helped her the most has been medication; she’s on fluoxetine. I couldn’t overstate the help it’s been: she’s happier, more relaxed, anxiety way down... she goes to school and gets on with work now, too. She even has a few friends now.

If you don’t already have medication, OP, it may be worth speaking to your GP about?

Medication is one of the issues I've been having.

I believe I'm being portrayed as anti med but the reality is I've had a lot of problems with side effects and extreme adverse reactions (one time I appeared to be having a stroke, it was sheer luck the dr I saw at a&e knew of a similar but rare presentation being possible with the med I was on at that time) so I'm wary and eager to find the RIGHT medication.

I'm on an antidepressant that is extremely dangerous to come off without close supervision and yet I now have no supervision at all. This antidepressant I've been on almost a year and it clearly isn't working but despite me saying that for about 8 months now and asking to try something else I've been ignored.

I've had great success with the meds in the past but unfortunately can no longer take those ones as for a variety of reasons they're now contraindicated, this includes the one that caused the stroke like symptoms which until then had worked really well with the OCD.

I have also been asking for almost a year for psychology support which I was told until now wasn't possible.

I'm now doubting the accuracy of everything I've been told and don't really know where to turn.

I know I could make a complaint but quite honestly in the real world most of us service users know that this is a last resort and often results in them being pissed off and not particularly inclined to help.

I feel completely let down.

GP is also somewhat in thrall to mh services and won't override or even consider alternative opinion to theirs.

What would the help you need look like to you?
Are your requests and ideas something that can be done?

"What would the help you need look like to you?"

Help to find the right medication that works for me but working with me to do so. Listening to my concerns or feedback on side effects or non efficacy. I know that
there's a lot of medication out there but I'm being offered a very limited range of options. I've had medication work very well in the past but am struggling to achieve that now. I understand it can take 6-8 weeks usually for certain types to take effect and I've waited and given meds a "chance to work" before asking for alternatives or additional meds. Each time I've asked this it has been several MONTHS until a change has been agreed to be made.

Support from psychology services - which I have been asking about for almost a year and was until very recently told by cpn was absolutely not possible unless I was able to attend the office in person. I'm now being told otherwise and I believe it was possible before and I was falsely informed otherwise.

Support from someone who has real experience in OCD. I believe this cpn only has experience with relatively mild cases and has no specific training or experience with OCD beyond that.

Something just feels really badly off about how it's all being handled, I'm not getting straight answers to straight questions and I'm getting conflicting answers on some.

I feel I'm being seen as a nuisance and I'm honestly seriously concerned that my case, me has been very much wrongly represented to the rest of the team who I've mostly never even spoken to, certainly nobody that's currently there.

I don't think these are impossible at all.

I’m so sorry I don’t know how to advise you further . But I feel for you, and your situation makes me worry about my DDs future when she’s over 18 and moves on from CAMHS.

You mention being frightened and angry... if your feelings become such that feel you’re in crisis, you could go to A and E. That may give you the opportunity to speak to other HCPs and/or be assessed by a different team, possibly?

Thanks

Unfortunately I can't leave the flat haven't left it in almost 18 months now.

Yet the advocacy service is saying (and they have local knowledge) that it's likely the Cmht will claim I'm not Unwell enough to need their services. Apparently that's because that's the only reason they're allowed to discharge you against your wishes.

I'm sorry for worrying you of course not my intent I'm just fed up and feeling so so abandoned

Hi OP

Well at least you’ve had some CPN support, my DH has had nothing at all from the NHS for his OCD.

People keep telling us to get help, but where from? Each time I’ve tried its amounted to nothing. My DH can’t get to the GP BECAUSE of his OCD. I’ve asked the GP for help and they won’t do a home visit or even a telephone appointment, as they want to assess him ‘properly’. All I wanted the GP to do was to refer him to a psychiatrist, as DH says he will only take medication prescribed by a specialist. He has no confidence in the GP.

Even if we now get the referral, it might be months before we get an appointment and I don’t know if he would be able to get to it. Ideally we need a specialist to see him at home and prescribe whatever is necessary. It seems that’s too much to ask.

He’s already had private CBT and once mental health services found this out they said there’s nothing more they can offer through their service.

So basically the GP tells you to go to mental health services and they don’t do anything because they’ve not got the expertise or resources.

So we are trying to do it ourselves and unfortunately I think many people are in the same position.

You have my sympathy OP but i don’t know what can be done

That's awful. You have my sympathy too.

This really shouldn't be happening at all. We need and deserve the support and we aren't getting it.

There's absolutely no good reason for not providing home visits to those of us housebound BY AN ILLNESS.

That it's a mental illness doesn't make it any less real or debilitating or less worthy of care.

Waiting lists are ridiculous but matters are definitely not helped if referrals are refused or blocked leaving a patient to become more unwell and therefore when they do get to access the service they then need it for longer. It's so short sighted and doing patients a massive disservice.