So angry, Son has been discharged

[Loftylady]

Hi

 

My son, who is 22, was discharged yesterday from his CBT sessions. He was alone when he was discharged, a vulnerable adult effectively thrown back out into the community with no support.

He has found it difficult to engage with the CBT, mainly because of low mood and motivation. He asked two weeks ago if he could work on his mood and his therapist agreed, and he has been working on the things they agreed he would do to try to improve his mood. Two weeks!! That's all, and his therapist has given up on him!

He doesn't want to start medication. He has had a discussion with his therapist and myself and his Dad about it, and doesn't want to start it because of the side effects which he believes will cause him more anxiety. He went to his session yesterday and was discharged as he was told that there would be an expectation there would be an improvement after 8 weeks and there has been little improvement after 12. I understand this  to a point, but surely to discharge someone in his state is wrong?! If the therapist isn't seeing an improvement, I feel its his duty to work with him until his mood does improve, and if he cant do his job, to refer him to someone with more experience. To discharge my son, who lives by night  and sleeps by day, spends up to 4 hours in the bathroom at a time, doesn't wear clothes most of the day because they feel dirty, and whose world has shrunk from going to University to hardly leaving his bedroom is diabolical!! I have obtained the details of the person I can address a complaint to, and fully intend to do so.

NICE guidelines state that there should be a multi disciplinary review for people who fail to respond to treatment including the use of medication, so how can they discharge him without the same? Or is it the case that because he's refused medication, they want to wash their hands of him because he doesn't fit in their box? The only answer cannot be to medicate people!! NICE guidelines state that the therapist should engage the family with treatment, reassurance etc,but we have not had this opportunity. NICE guidelines also  state that people treated and recovered should not be discharged without some level of ongoing support, so how can they do this to someone who is still ill? He has been around their system twice, and I refuse to let him sit on a waiting list again.

 

I am so angry that the level of expertise around OCD is non existent.

Has anyone else had a family member who doesn't want medication? What was the outcome?

 

 

 

 

[snowbear]

Hi Loftylady,

No wonder you're angry. You're absolutely right that he should be reassessed rather than discharged. Although there's likely to be pressure from all sides for him to take medication because he's not responded within the allotted the time frame, he's completely within his rights to refuse it and ask for more CBT. 

As a first port of call, have you spoken to your GP?

Have you also contacted the CBT provider? (Not the individual therapist, but the service provider.) Ask what they have put in place as a management plan upon discharge (puts the onus on them to provide something) and what recommendations they have made for further treatment. 

If that doesn't get you anywhere, please come back to us here, or you can contact the charity direct and we will do our best to help. 

The number to call for support advice is 03332 127 890, alternatively you can send an email to:  support@ocduk.org

[Loftylady]

Thank You.

I contacted them for the name of the person to complain to but that's all at the moment. As my son is 22, It'll need to be him really, as they probably wont talk to me.

 

I will encourage him to call them and then speak on his behalf with his permission if I need to. Ill get back to you when ive don't that.

 

Thanks again, xx

[Loftylady]

Hi..

My complaint re Son’s care has gone into the service provider and he has signed form to consent to them contacting me further once they have completed their investigation.

I have asked his service provider for an explanation regarding his care, and to give him an appointment in a few months so he can then reassess if he’s ready to try CBT again. If not, to give another in a further few months until he is ready. I refuse to let him go through the referral process/wait months again. This is all I have requested and don’t feel that it’s too much to ask. 

He is spending up to 5 hours ( at worst, 2 at best) in the bathroom each time he goes, continually wiping himself for fear of still being dirty, to the point that he bleeds. He says he is making progress by himself and feels his method of reducing is helping him more than CBT ever did.

Obviously the door is locked when he’s in there, and any attempt by me to encourage him out falls on deaf ears as he’s not ready to come out until he feels he’s done.

Therefore, I regularly check he’s OK, and apart from that I can’t do much more. He has other huge issues too but this is one of his worst at the moment. He is aware of all of them, but his head is too overwhelmed to find motivation to make bigger changes at the moment. 

I feel after now about three years of challenge, emotion, heartache etc that unless he is ready to change, there is little I can do, apart from encourage any small steps he may make. Everything he does is on his own terms. I know that constantly pecking him to try this and that does not work, and feel now that I have to let him find his own way. Support him as much as I can, but realise that I cannot make  him do anything. Trying to “ control” the illogical ( to me at least) just doesn’t work . 

It does feel though as if I’m giving up on him. He says I can’t help him, and knows it has to come from him. He seems “ happy” enough at the moment staying in his room mostly, being on his laptop and doing his own thing. It’s not what I want for my brilliant, highly articulate and intelligent Son, but I cannot make him do what he’s not ready to do. His head is so overwhelmed that I think there is security/comfort in his routine and until he is ready to change,  change won’t happen.

 

Am I right to do this? If not, please give me some more pointers because I’m  all out.

xx

 

 

 

 

[SnookerTable]

Loftlady

Sorry to hear about your son, I am also an ocd sufferer and can understand fully what your son must be going through

I am not a doctor but for anxiety conditions like ocd, "anti-psychotic" meds are also prescribed (Again ocd sufferers are in no way psychotic , but this med helps the anxiety)

I have been on the "anti-psychotic" called Olanzapine for several years now taking a small dose and I am 80% better mainly with this med, only problem it is very likely to give significant weight gain, you could talk to a doctor about these types of meds for your son, there are others other than Olanzapine, I also take a small dose of Prozac an SSRI, again these meds have been a life saver

 

[Loftylady]

Thanks Snookertable, but my Son doesn’t want to take medication. He has weighed up the pros and cons and has decided not to take any.

I think this is one reason why he’s been discharged. NICE guidelines don’t account for people who don’t fit their mould,  unfortunately.

Thank You for your reply though. I hope you continue to improve  

xx

 

[snowbear]

On 19/07/2018 at 15:50, Loftylady said:

I feel after now about three years of challenge, emotion, heartache etc that unless he is ready to change, there is little I can do, apart from encourage any small steps he may make. Everything he does is on his own terms. I know that constantly pecking him to try this and that does not work, and feel now that I have to let him find his own way. Support him as much as I can, but realise that I cannot make  him do anything. Trying to “ control” the illogical ( to me at least) just doesn’t work . 

I think this is a realistic view of the situation. 

Quote

It does feel though as if I’m giving up on him.

No. Don't tell yourself that. You've not given up on him, ever. You're still supporting him, just accepting he has to make the next step by himself. Think of it like when he was a baby finding his feet. You can stand them up and hold their hands, but only they can decide if they're going to walk or collapse on the floor in response. Sooner or later all babies try a step or two. Have faith, have patience. And meanwhile look after yourself.  

[Loftylady]

My son has deteriorated. He spends up to 8 hours in the toilet, sometimes twice a day,wiping himself endlessly day and night. 

Hes not eating properly, not sleeping properly, he’s losing weight. He’s been prescribed Ensure by a dietician who saw him after being referred by a Dr who he sees for another condition.

Hes so defensive, I can’t get through to him. He says he can “ do more by himself” , yet clearly he can’t. 

I don’t know what to do. I’m terrified he’ll slowly kill himself.

Is there anyone who can point me in the direction of a private psychiatrist who knows what they’re talking about? 

So many therapists say they “ specialise” in OCD, but their list of “ things I can help you with” is extensive which makes a mockery of the word “ specialise “.

Im in the North West.

Thank You x

[Hal]

Hi Loftylady, 

I'm sorry both you and your son are having to go through this. Someone may already have suggested this, but would your son consider taking a look at the forum and possibly signing-up, or perhaps having a chat with Ashley, the charity's founder? 

I think it would help him to speak with someone who knows exactly what it's like dealing with OCD around contamination issues....his tel' no's 0332 172 890.

Ashley's very easy going and approachable, talking to him could help your son to see he now needs to accept he can't do this alone and needs to take another approach. 

In terms of therapists, again Ashley would be the best person to have a word with, but he did provide me with this list when I was looking for therapists at the top of their game specialising in the treatment of the disorder. 

Unfortunately they are all based in the South, but maybe a few sessions via Skype might be an option in the short term:

Dr Lauren Callaghan (East London) http://themindworks.co.uk/

Dr Elizabeth Forrester (Petts Wood) - http://www.dreforrester.co.uk/ (offers treatment via Skype).

Dr Stephanie Fitzgerald - http://www.fitzgeraldpsychology.com/ (offers telephone/Skype therapy).

I'm sorry I couldn't be more helpful,  but I really hope he will reach out.

Are you coping okay? 

[Dawnie]

Hi loftylady

I'm so sorry to hear of the distress which You both must be going through. I hope my children don’t suffer from OCD like I do. 

If it’s any comfort, I never wanted to take medication. I put it off for 3 yrs before I started taking an SSRI. I wish I had taken them sooner. I do feel the longer the suffering the longer the recovery. Nice guidelines state SSRI and CBT. However I had CBT without SSRI. But it didn’t work. Then I was lucky enough to have second lot of CBT while taking SSRI and the therapy started to kick in. 

The SSRI made the OCD tolerable. I’m not on any mood stabilisers but pretty sure they would help. I use exercise for my mood stabiliser and....... chocolate LOL. 

Taking medication is not something to be ashamed of and you can tell him that from me. Perhaps this is a control thing for him. OCD suffers can’t tolerate anxiety. Control is key. This is why I didn’t want to take meds for ages. I had to in the end. I was absolutely exhausted mentally and depressed and in a horrid horrid place. My entire life was OCD. 

I feel for him I really do. And hard for you seeing him go through it. Please be reassured it can get better. The biggest step is getting the right help and he would start to recover. 

I agree with Hal about getting in touch with Ashley. He seems easy going and got great advice. 

Best wishes

xxxxxxxxxxx