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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To “abandon” my son to this…

179 replies

Jessica3075 · 23/11/2023 00:16

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.

OP posts:
Snackpocket · 03/12/2023 09:25

Agree with @Mirabai AXA haven’t said they won’t cover the claim by the sounds of it, but they can’t make a hospital take the OP’s son on as a patient.

I think it’s worth trying to see if AXA will cover a consultation with a private psychiatrist, but be warned it may take time to get an appointment. Private mental health treatment is in huge demand and it can be hard finding the right person who has availability.

BellsRingingOut · 03/12/2023 09:47

My point is not that someone in crisis doesn't need a psychiatrist now. My point is that inpatient cover has been denied and the insurance covered/self funded private outpatient route does not lend itself to a crisis situation.Current waiting time for a Priory outpatient initial OCD psychiatrist is six to eight weeks. This is London/Home Counties and as of last week. If OP can get crisis help and switch to a psychiatrist (who can prescribe) led outpatient programme with psychotherapist support to follow, this can be very effective but the timeframes mean it has to be second phase.

Mirabai · 03/12/2023 10:05

Private inpatient care denied + not appropriate at local places; NHS inpatient care unavailable and inappropriate - as per the NHS psychiatrist.

And your advice is to seek no help at all?

At this point any support from a psychiatrist experienced in ASD and its comorbidities is better than nothing.

OP is not in the Home Counties, we’ve no idea what her wait time is. Priories are not the only places to offer private psychiatric care.

RedToothBrush · 03/12/2023 10:29

BellsRingingOut · 03/12/2023 09:47

My point is not that someone in crisis doesn't need a psychiatrist now. My point is that inpatient cover has been denied and the insurance covered/self funded private outpatient route does not lend itself to a crisis situation.Current waiting time for a Priory outpatient initial OCD psychiatrist is six to eight weeks. This is London/Home Counties and as of last week. If OP can get crisis help and switch to a psychiatrist (who can prescribe) led outpatient programme with psychotherapist support to follow, this can be very effective but the timeframes mean it has to be second phase.

How does that help someone living in Cheshire?

BellsRingingOut · 03/12/2023 11:19

Mirabai · 03/12/2023 10:05

Private inpatient care denied + not appropriate at local places; NHS inpatient care unavailable and inappropriate - as per the NHS psychiatrist.

And your advice is to seek no help at all?

At this point any support from a psychiatrist experienced in ASD and its comorbidities is better than nothing.

OP is not in the Home Counties, we’ve no idea what her wait time is. Priories are not the only places to offer private psychiatric care.

Who said seek no help at all? The point is that the OP needs help now. Of course she can speak to local Priory (or other private psychiatric care provider) for local wait times and try to get something in place for follow on care but generally speaking across the country you are looking at circa six weeks for an initial appointment - again confirmed by Priory last week. I was simply quoting a specific concrete example from last week which was London/Home Counties, not because I thought the OP lived there.

Mirabai · 03/12/2023 11:53

Who said seek no help at all?

You said: self funded private outpatient route does not lend itself to a crisis situation

As if that was not the only and quickest route to support right now.

Mirabai · 03/12/2023 11:56

It’s far from ideal, but it is what it is.

WinterParakeets · 03/12/2023 11:58

You are not abandoning him, you are pressing for the urgent treatment he needs.

We don't acknowledge MH issues properly in our society. You wouldn't feel guilty if an overtly physical ailment was beyond your capacity to nurse. This too is a physical ailment - a malfunction of the most important organ of the body - the brain.

Clearly his current situation is not healing him so he needs a new approach. You are being loving and courageous.

BellsRingingOut · 03/12/2023 12:55

@Mirabai. Back off now. This thread is no place for a spat. OP I have very direct and recent experience of spanning NHS and private psychiatric led psychotherapy following a suicide attempt of someone close. I would be happy to share with you by DM but not on a public forum. Feel free to DM if it would help.

Mirabai · 03/12/2023 13:09

Excuse me? You instigated this, attacking me personally, giving confused advice, if anyone should back off it’s you.

You are not the only person with experience of private and NHS mental health services and ASD on this thread.

I will not respond to you further.

Original poster
Jessica3075 · 03/12/2023 19:39

So, have arranged a private meeting by Zoom, with a professor who specialises in OCD. He’s based out of the Maudsley and Nightingale. It’s happening on zoom, as I’ve no way of physically getting him to London.

I appear calm? No. I’m fecking furious with the state of MHS in 21C Britain. And, I’m using my money to pay. I’m not wealthy.

I don’t know what is going on in this country. Scandalous. And each time a young person (many many males) ends their lives we say, “we must learn from this”. When!!!????

OP posts:
Mirabai · 03/12/2023 19:45

Brilliant. I hope he’s helpful.

You should be able to get that covered retrospectively - DS’s GP can write a referral letter for AXA.

flourella · 04/12/2023 00:00

I hope the appointment with the professor goes well. If it's who I think it is I'm sure you will get something out of talking to him; he is the first person I would approach if I could go private. I hope he comes up with a plan that can be covered by your insurance, if the NHS are saying that acute wards are not the right place for your son and the waiting list for other treatment is currently long.

Igmum · 04/12/2023 06:16

Good news and very good luck

Rarewaxwing · 04/12/2023 10:28

I'm glad to hear that, @Jessica3075. I hope this helps you find out what to do next. My son has been on a waiting list to see a consultant from the Maudsley for many months, on a private basis, so it's good that you have got an appointment already.

NHS support for mental-health problems is so hard to get now that desperate people are being pushed into paying for private care - which means even private care has long waiting lists. It's a terrible situation. People don't realise how bad it is until they have personal experience.

Rarewaxwing · 04/12/2023 10:31

Actually, @Jessica3075 , I suspect we are booked in with the same professor. We have been waiting seven months for our appointment.

Original poster
Jessica3075 · 04/12/2023 11:09

@Rarewaxwing I’m sorry. That shows how everything is royally “uckd”. Our appointment is so expensive that I’m seriously worried I’ll be able to heat the house for a quarter. I’d hit a brick wall.

OP posts:
Rarewaxwing · 04/12/2023 12:32

@Jessica3075 - yes, agreed. What is so terrible is that there is a very clear treatment plan available for OCD - SSRIs and CBT-ERP (all set out in the NICE guidelines) - but the NHS barely supply it. It's like going to hospital with a broken limb and being told they won't help you. Somehow, because it's a mental-health issue, it gets downgraded. It's not seen as an 'emergency'. But it can be life-threatening, as you mentioned earlier (my son has admitted to feeling suicidal at times). And even when it isn't, it still destroys quality of life. It's unethical not to provide treatment.

The government say they want people with mental-health problems and disabilities to do some form of work - well, they should provide the necessary treatment and support for those people then! There is no way my son or yours could do any kind of work, even home-based.

I made a formal complaint to my local mental-health service and received an apology for my son's poor care. Have yet to see if this will lead to any changes.

Your poor son sounds in such distress - I'm so sorry. I hope the appointment with the Maudsley doctor brings you some light at the end of this tunnel.

OneFrenchEgg · 04/12/2023 13:27

A little bit of hope: our dc was very unwell and sectioned due to ocd and is now living a very much improved life with a lot of hope for future 'normality' in terms of being like others and going to FE and working. This was due to outpatient at Maudsley.

Rarewaxwing · 04/12/2023 20:51

@OneFrenchEgg - good to hear.

Canisaysomething · 09/12/2023 11:13

Keep fighting for your son. Keep going, you are doing an amazing job and he will get better. He is very lucky to have you 💐.

Original poster
Jessica3075 · 13/12/2023 18:07

He remains on the respite until til Monday when they need that bed. Still on Valium and Prozac. He has to return home to me as… yep, you guessed it, THERE ARE NO TREATMENT BEDS 🤦‍♀️🤦‍♀️🤦‍♀️😡

OP posts:
Lulu123450 · 13/12/2023 18:14

You can’t feel guilty, this is out of your control & he needs help. My son has to be sectioned at 15 for being suicidal & it is the most awful feeling as a parent but you can’t do this alone. You are doing this out of love and nothing else. X

flourella · 13/12/2023 18:25

Have you had the meeting with the professor yet to discuss private options? I was hoping you'd get a good outcome from that. Or spoken to the mental health team about inpatient OCD treatment on the NHS in the future? I really hope they don't think it's fine to have no plan in place for him, even if it's one that will take a few months to come to fruition. Has he been better able to eat and drink at least while in the respite place (sometimes people with OCD are most restricted in their home environment)? Can't believe they are discharging him back to the same situation though; no wonder you are frustrated and angry.

NeedToChangeName · 13/12/2023 18:32

Can't offer any practical advice, but sending good wishes to you. You sound very kind and caring. What a worrying time