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My son

12 replies

Jessica3075 · 22/11/2023 23:58

My son has crippling ocd as a comorbid to his Aspergers. He is an adult. We have managed to keep him out of hospital so far but today discussion was had re. hospital and possibly sectioning.

I am sick with fear. He is so so out of control that I have no idea what to expect each day I get home from work. He’s given everything up (work/gym/all but essential food and water) so that he can accommodate his rituals. The drains keep getting blocked due to his using up to 12+ loo rolls in a bathroom session last 4 or 5 hours plus. He’s using 2+ litres of soap a day and he’s mopping the carpets. I know he’s very ill but I’m scared for him “disappearing” into hospital and never coming out.

I can’t do any more. I can’t help him.

I just don’t want him in hospital as he’s so very vulnerable.

OP posts:
TheUnRed · 23/11/2023 00:29

is your son currently receiving any medical care? Does he have a therapist or psychiatrist? Is he on medication? I am so sorry you are all going through this.

flourella · 23/11/2023 01:03

Hi.

On what basis are they suggesting he be sectioned? What you've outlined is obviously a severe case of OCD but I'm not sure what life-threatening risk he is posing to himself or anyone else by struggling even to this extent with cleanliness, unless he is suicidal because of it all.

I am autistic and have very severe OCD as well. I've never spent 4-5 hours on a single use of the toilet (if that's what you mean by "bathroom session" and all the toilet roll used) but I do spend hours a day washing my hands and forearms. The ritual I do after putting out rubbish takes over an hour even though I wear disposable gloves for it, and that's if it goes right and it often doesn't. It can take two. I also can't store food or drink in my home, or drink tap water, or eat or drink anything that needs heating or the use of cutlery, crockery, etc, so I only eat and drink a limited range of items that can be consumed straight from the packaging without being touched and I only leave the flat to buy this every other day at most. I eat and drink standing in the middle of a room and have a lot of rituals around cleaning the packaging, as well as how I open it and lift it up to my mouth so I can make sure it doesn't accidentally touch the walls or whatever before I consume the contents. This (and my hand washing) comes with unique referencing phrases and/or numbers I make up for each occasion, so I have the reference code alongside the memory of performing the ritual and so afterwards can be as certain as possible that I did do everything correctly each time. I have had something to eat and drink this evening but the last time I had anything was Sunday, so three days with no food or fluids. This is not uncommon. My eating and drinking has been some version of this for 20 or so years but the OCD goes back to young childhood (I am 43). There's a whole load of other stuff to do with my eating and especially my OCD, which covers a lot of themes, but I'm just telling you those couple of things in brief (yes, the above descriptions really are brief compared to what they could be!!) to show that maybe I am similar to your son if not exactly the same.

I've lived in a supported independent living scheme for 16 years and haven't worked for 19. No one has ever suggested I be sectioned even though I supposedly have a separate psychotic disorder as well as the severe case of OCD. The OCD has obviously damaged to my physical health as well due to the restricted intake of food and fluids, so I am at risk of harm. I was accepted by an NHS highly specialised OCD ward a few years ago but declined the place when I reached the top of the waiting list. This year I was referred to an NHS highly specialised outpatient service and will start therapy there in January, although the letter telling me I had been accepted said that someone with my particular symptoms at this level of severity would benefit more from being an inpatient and that the outpatient appointments were being offered as a "trial", which worries me because I really wouldn't be able to eat and drink or sleep or even sit on an upholstered chair in a hospital or any public place, so if they end up telling me they will only continue therapy with me as an inpatient I will have to stop the treatment. Unless they decided to section me, but it really is uncommon in patients with OCD as the primary illness, which means the staff on a general acute ward would probably not be the best to help your son or anyone with severe OCD. Are they saying why they want to section him, and what they propose to do in terms of treatment in hospital? I really would be amazed if they could offer him the specialist OCD therapy he clearly needs.

Has anyone ever suggested treatment at one of the national centres? They are mostly in London but take patients from all over the country. There is a medical ward in one London hospital trust, a residential unit and its sister outpatient clinic in another, and outpatient clinics in Oxford and Hertfordshire. NHS England can also commission inpatient treatment at the Priory in North London. I don't know much about the Priory or Hertfordshire NHS service, but the others are overseen by world-renowned experts in OCD and they apparently all get good outcomes for many patients. OCD-UK has good information on them, plus a forum that I sometimes use and would recommend you read if you haven't already and maybe join because there are a lot of people with experience of OCD at all kinds of levels, including to the level to which your son has it. Lots of knowledge about accessing services as well.

Jessica3075 · 23/11/2023 14:08

He needs intervention. He won’t go voluntarily.

OP posts:
flourella · 23/11/2023 22:48

I won't go in voluntarily even though my situation has been dire for decades now and I am judged as needing specialist inpatient treatment, which is why I got my CMHT to convince one of the highly specialised outpatient clinics to take me on this time, though as I said, it's only a trial and no one seems to think I'll make much improvement as an outpatient. They had conversations with all the services to negotiate this before referring me.

Have you ever had a discussion about, or contact with, any of the specialist services? The two with which I'm familiar are: the OCD/BDD Service at Springfield Hospital, which is part of South West London and St. George NHS Mental Health Trust; and CADAT which is under South London and Maudsley, which also has the residential ADRU. The OCD services don't normally take people who are under section but maybe they make exceptions sometimes when it's OCD that has brought a person to that point. Perhaps one would admit to an acute ward on the hospital site with increasing input from or transfer to their OCD service? I don't know where you live obviously so you might not want him in London, but the situation does sound pretty desperate. Might be worth discussing with his mental health team if you haven't already and see if they'll contact them, as an alternative to a general ward in a general psychiatric hospital with no specialism in OCD.

I don't know if private treatment is an option for you (apologies if not), but the Nightingale in London has a good reputation for OCD treatment, I believe, as well as the Priory I mentioned above. In fact, the psychiatrist who oversees the Maudsley services and used to oversee the Priory now works at the Nightingale and I've recently read that the current standard of OCD treatment at the Priory is in question. So if you have insurance or can afford to pay, I would look at the Nightingale. I don't think they have the same rule about not taking on patients under section either.

Wolfiefan · 23/11/2023 23:03

OP I’m so sorry. But if he’s so vulnerable surely a safe and secure place with MH specialists is the right place for now. The idea of sectioning is that it’s a temporary thing to start him on a road to recovery.

Jessica3075 · 23/11/2023 23:47

I don’t mean to be rude and I very much appreciate the input to the thread but please, read the posts I’ve made because @flourella you've asked very relevant questions that I’ve already answered, a number of times.

And he’s stopped eating/drinking in the day (taking only sips of water in the evening) to prevent the need to use the bathroom.

This evening, he’s spraying the walls with Cif bathroom cleaner because he is afraid if he walks past them, germs from the dog will contaminate him.

I will say again HE ATTEMPTED Suicide last year. He was discharged by adult services as they felt it was all about his asd. There are no services being offered.

OP posts:
flourella · 24/11/2023 00:05

@Jessica3075 You have made two posts, the second being a single line saying almost nothing, and neither mentioning suicide once that I can see nor saying that he was only sipping water (in your opening post you say he is taking essential food and water which suggests restriction but not beyond what is needed to comfortably survive).

I know my posts have been long and probably boring but I've answered with relevant information based on what you've written. These posts took me the best part of two hours to write (I started writing the first a couple of minutes after you started the thread). Sorry you didn't find them helpful.

Jessica3075 · 24/11/2023 00:13

@flourella Im so sorry. Have just realised that this thread is on Mental Health

I have reposted on AIBU because I needed greater input more quickly (I thought he’d be sectioned today).

The thread is “Can I abandon my son…”

You have taken time to reply at length. Not boring in any way and I very much appreciate your trying to help. The other thread has 5 pages to it and I have replied at length, on there.

Please accept my apology x

OP posts:
Goodornot · 24/11/2023 00:19

I didn't think it's particularly helpful to have long and distressing to read descriptions of someone else's ocd rituals when she wants advice about what to do about her son.

You can't compare situations anyway.

flourella · 24/11/2023 00:25

@Jessica3075 after editing out my arsey comment about not having advance-searched you, I advance-searched you. Have read all your posts on that thread and some of the replies.

I am really sorry about how bad things are currently and that the psychiatrists did not get in touch today. I know you don't want him in hospital and that's understandable, but something has to change and if he isn't eating then sectioning is quite likely needed as the first stage of potential recovery. I'm sure you know that as well, better than I do. I truly wish you both all the best.

flourella · 24/11/2023 00:29

@Goodornot that's fine; I wasn't talking to you.

I gave a matter-of-fact and (in my opinion) not-at-all-distressing outline of some of my rituals to demonstrate that I have a true understanding of OCD at the very severe end of the scale. I thought that might help the OP, along with the information about the national-level services. Maybe it didn't and wouldn't have helped anyone, but I know when I read things online and hear things on the radio, about mental illness in general and OCD in particular, it's quite clearly mostly from people with experience at the mild or moderate level and it makes me feel alone.

Jessica3075 · 24/11/2023 07:06

@flourella Thank you ❤️

OP posts:
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