To “abandon” my son to this…

[Jessica3075]

My son has crippling ocd as a comorbid to his diagnosis of 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 was told today there are no beds available so, he’s still at home with me tonight.

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. 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 him using up to 12+ loo rolls in a bathroom session lasting 4 or 5 hours plus. He’s using 2+ litres of soap a day and he’s mopping the carpets. His body is raw and bleeding in places due to scrubbing. I took away his scrunchie thing for shower gel and he was uncontrollably anxious. I had to give it back to him. I know he’s very ill but I’m scared of him “disappearing” into hospital and never coming out.

I can’t do any more. I can’t help him. I want desperately to help him but I’m lost.

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

Friends and family say I’ve no choice but to “hand him over” when a bed becomes available but I still feel enormous guilt and pain.

I think our example is more akin to @DizzyFeet I would suggest really understanding why hospital and what can they offer because in my experience there are very few specialist OCD placements and hit and miss as to care.

If you have not done so already please look at SLaM and the adult OCD pathway of over 18, they are a world specialist and can take NHS referrals

Thank you for all the replies. I don’t know where to start in responding. So many; thank you so much, all of you.

Spoke this morning with AXA ppp. He has private health insurance and has never claimed on it. It came with dad’s job and I just kept it up after our divorce.

Told by them, after 22yrs of payments, AXA may not be able to get him into anywhere. They can “pick and choose the cases they’re prepared to take on”. NHS have no immediate beds (which is why I’ve contacted AXA). Last year he was on a general ward and I was told by staff he was an adult and I needed not to mother him. They’d no idea what to do with him/his condition and I couldn’t wait to get him home.

Waiting for a call from emergency Section psychiatrist.

Ds was seen at Maudsley aged 16 but said they couldn’t get him in until he was post 18.

His OCD has been diagnosed for 13yrs. There’s nothing out there.

This. Don't feel guilty.

Updating:-

Was told I’d be contacted this afternoon to organise a meeting where two psychiatrists come to our home to assess (NHS). From that assessment they will hospitalise him if thought the best option. I have waited all day.

They’re not going to call me now, are they?

Ds has been in the bathroom since 9.30am. He’s still there. He’s shouting because the toilet is blocked and won’t flush.

I think I’m lost.

They will come out at all hours of day and night. MH assessments are 24/7 service. I would call and follow up thought to get a rough idea and stress how urgent it is (they will know, of course, but doesn't hurt to call)

Just wanted to send you a hug op, this must be so hard for you.

He needs help. My cousin was similar. Autism and OCD went to a rehab clinic for 6 months and is now much much better and functioning so well. No longer scrubbing hands to bleeding.
He needs help and you need to ensure he gets that help. They can make him better. It’s not easy but it can be done

All other sections are reviewed every 28 days and are then either rescinded or renewed for further 28 days

This is wrong. S2 is reviewed at 28d. If not rescinded beforehand. And will not be renewed for another 28d. It’s allowed to expire or a S3 assessment is done. S3 will run for 6 months unless rescinded by the RC/AC or at a hearing.

And even though section 3 is technically indefinite, it is still reviewed monthly as part of ward rounds
S3s last for six months and can then be renewed every year if criteria are met. That’s not ‘technically indefinite’. And WRs can happen daily, weekly, twice a week. Not sure why you think it’s monthly everywhere.

And it’s illegal but I have seen people ‘persuaded’ to come in ‘voluntarily’ to avoid a section. It’s wrong but coercive admissions happens.

OP others have said that you are not abandoning your son. That is so true. The issue I foresee is that due to bed pressures, they may try and discharge him before he is ready. Make sure you try and insist he stays. Though if he manages to appeal his S2 successfully that might be taken out of your hands.

I can’t believe the doctors said they would come and then didn’t. Utterly unacceptable. Good luck OP x

I can only speak for my area in London but it would be unlikely for a planned MHA assessment to happen out of hours. They need to organise police, ambulance etc.

And they would only organise all that out of hours if they saw an immediate risk to life or limb.

I really hope things are better in your area and you get some help tonight though. My heart goes out to you.

I would also contact your local autism hub if you have one and get an advocate.

Once admitted, your son will be eligible for care treatment reviews, like a pp said. They will scrutinise the treating team’s actions and want regular updates on his management.

I was going to ask if he had private health insurance but didn’t think it was very likely. If he has it then you could make an appt with a private psychiatrist at your local Priory for example. You could make an appt tomorrow and backdate the referral from the GP. (Which you will need to get it covered).

If the psychiatrist recommends admitting to the Priory (highly likely) you can then have another conversation with AXA.

If you've been to the Maudsley, you might have Royal Bethlem in West Wickham as an option? I think they're part of the same mental health services circuit? My dad was in the Bethlem for 12 months and they were great with him. I know the difference wards can vary greatly but my dad is a fiery old man with dementia and he was very sick. He left much happier. Totally different condition (although he also has OCD) I know but Bethlem was, for us, good.

Just in case that helps x

Hello all. I’m making my way through the posts. It’s still t shocking to me that people hear OCD and think it’s about “hating to see the towels askew”.

Some of you have said it’s an opportunity for him to get well. It’s his vulnerability, his ASD which scares me. I’m terrified of the stories you hear where an asd patient has been “lost” having been admitted for assessment. Then, years later, the family is petitioning their MP to have them released. It happens. I’d end both our lives now, if that was our future.

He’s sat with me now, looking anxiously at me and promising he’s going to try harder tomorrow.

This country, this govt has done terrible things to us, to society and our once functioning NHS.

I am a nurse. Not mental health but still, an RGN.

If it were me I would move heaven and earth to try to get him into a private hospital over an NHS one.

Hi @Mirabai
Axa have tried three Priory hospitals. Apparently, he’s “too poorly; beyond their remit”. He’s had private health since he was 3 via work insurance. The AXA rep said “they can pick and choose which cases to take”.

Waste of money.

@StandByMode We’re in Cheshire and awaiting Cheshire East Crisis team to come back to us.

Our Maudsley appointment was years ago when CAMHS here said “we need another opinion. We’ve done as much as we can”

Thing is, he’s a clever young man but… ASD

You are of course correct, apologies but my memory of sections is clearly too rusty. However, the point I was making is that a person cannot by definition be coerced into sectioning because putting someone onto section is only an option if they deemed not to have capacity to make decisions about their care. Whereas if some was hypothetically coerced into informal admission, they are a voluntary patient and can discharge themselves at any point unless subsequently sectioned. So I don’t see how the previous poster’s brother has been coerced into indefinite sectioning and I don’t think this should be taken into consideration by the OP who already has enough to worry about.

I’m surprised the Priory think he’s beyond them. Have AXA tried the Nightingale Hospital in London? I think that’s got an inpatient OCD ward (and they deal with ASD too). (You may feel that’s too far).

I’m currently lying on my hospital bed. I was sectioned last week (but it was lifted yesterday, but that’s another story). When they came out and did my assessment they said I was 6th in the list for a bed and I’d need to wait a few days but then they found me a bed the next day. Beds are very scarce at the moment. Feel free to DM me if you want to know anything, I’ve been sectioned 6 times I think.

OP, I have sent you a PM - I work in your area and if I can offer any support and guidance please feel free to message me.

Maudsley/michael Rutter have an under 18s outpatient ocd clinic and an adult service - I don't know about the hospitals as we were general adolescent. My huge fear was losing my autistic ds to the system, there are parents out there reporting this and it's a blunt tool with no easily enforceable rights once in from my experience - I think op is allowed to worry about this. My counter would be to inform yourself as much as possible and be proactive as much as you can re: knowing his rights, contacts etc etc .

@OneFrenchEgg Thank you for understanding that specific worry. It happens. I’d end up being labelled the problem.

It's a big fear, misinterpreting behaviours and reacting with inappropriate treatment - we wouldn't have campaigns and new mandatory training etc if medication and care had been perfect or even adequate.
However, there is a change in attitude and culture I think. One of my dds placements was very keen to promote home.

Some of you have said it’s an opportunity for him to get well. It’s his vulnerability, his ASD which scares me. I’m terrified of the stories you hear where an asd patient has been “lost” having been admitted for assessment. Then, years later, the family is petitioning their MP to have them released. It happens. I’d end both our lives now, if that was our future.

As a parent of autistic kids, I’m well aware of this so I understand your fear, I really do.

Autistic people are so badly served when it comes to MH problems. Why do no services have training or guidelines re. treating autistic patients? It’s a scandal.

Having said all that, I think you’re in such a dire situation you have to submit to inpatient care and hope for the best, one day at a time.

I wouldn't, a lot of private mental health hospitals have horrific safety records in comparison to the NHS.