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.

The NHS mental health hospitals have horrific safety records of their own. Including a friend of mine’s sister who jumped out of window and is now paralysed.

The 17,340 serious incidents were reported in hospital, community and residential mental healthcare settings between the beginning of April last year and the same time this year.

In total:

15,254 reported incidents related to care in private community and hospital settings

2,086 related to NHS community and residential places of care

So private providers are proven to be more dangerous than NHS. Not saying that the NHS is perfect, it isn't, but 2k in comparison to 15k? I know where I'd want my relative.

Serious Incidents in Mental Health Settings

OP is he on specific medication for the ocd?

Op I don't want to overwhelm you so I'm just adding a link:
www.autism.org.uk/advice-and-guidance/topics/inpatient-mental-health-hospitals/autistic-people-and-inpatient-mental-health-hospit/aimh-casework-service

True. Paying doesn't mean better. Private health care is like the wild West. Very unregulated

Also there will be far fewer patients in the private system than in the NHS so those figures are shocking for private health care.

There gets to a point with a mental health crisis where you just have to take him to A+E. It sounds like he needs some much heavier meds and different options as well. If the crisis team won’t come out to you, what other choice do you have.

Sectioning isn’t the only option, but he needs an urgent medication review.

He has a social worker since his suicide attempt last year but it’s impossible trying to make contact. We’ve seen him once in 17months.

It feels like you’ve to ACTUALLY IN crisis before something gets done. Cheshire East appears to have no adult services available. The Wellness Hub told me that it wasn’t really what they dealt with.

You must be sick with worry. You are not abandoning your don you are helping him to get the help he desperately needs. They can get him on a combination of drugs and therapy. You can go to visit him. I hope they make him well. My nephew is schizophrenic and my sister and BiL really struggled when one of their sons had to be sectioned but they helped him and now he is out again but more in control.of himself.

I don’t have any useful advice but the situation sounds hard. You’re a good Mum 💐

@LittlestG Please don’t hijack a really serious thread. It’s easier to report incidents to the CQC than it is through the NHS system to NHS England where managers squash reports and penalise whistleblowers. Over 3% of NHS budget is spent on negligence claims - over £6 billion.

The friend of mine whose sister was seriously injured at an NHS hospital - they haven’t even admitted liability yet, so a legal battle is ensuing.

You use your common sense, read the CQC report of the private health provider, and avoid the places with poor records.

The point about the private sector is that you have much more control. They don’t have the same problems of lack of beds and facilities, lack of staff, mixed wards, and units with very very mentally sick people mixed with young, vulnerable people. They’re smaller and quieter. NHS psychiatric hospitals can be very overwhelming. Having seen both I know which I would choose.

However, according to OP her son may be too seriously ill for the private sector around her, so she may have no choice.

OP. Please contact any local autism hub you have and get an advocate.

And can I suggest something? Please use your time now to write down some kind of advance directive, or ideally written by your son if possible. Regarding his day to day needs. Eg foods, eating habits, lighting, washing needs, how he likes to be spoken to etc.
Then at least it can be looked at by staff and referred to by you.

I found this from east London. Maybe your son is not well enough to do this currently but you could put some ideas down?
https://www.elft.nhs.uk/sites/default/files/2022-01/advance-directive-for-mental-health.pdf

As someone working in the system, I know that wards can be difficult places for people with ASD. So it is good for them to have some idea of his needs, even if they cannot meet them all.

Please try and find an advocate in your area. The more voices your son has speaking for him, the better. And these CTRs are to try and prevent people with autism getting lost in the system.

x

I work for an outer London MH trust. Rightly so, LD and ASD awareness is now part of our mandatory training, it’s an online course but it takes half a day to complete. It was co-produced with adults with ASD and LD, and a lot of it is actually their experiences, told by them, of the heath and social care system. I think a neighbouring trust doesn’t have this as mandatory, tho, as an example of how things are not the same across the board even at this basic level of mandatory awareness training, which they should be.

what I gather is that an autistic person has a much better chance of receiving appropriate care that takes all their needs into account in a MH trust than a general hospital.

OP, does you son have a hospital passport?

Yes and the above can also be included in his hospital passport - they are there to inform staff of the specific needs around communication, sensory aspects, etc

Community psych team came.

Two psychiatrists, two social workers and a mental health nurse.

No beds via mental Health services Cheshire East. Put on Valium. To be seen each day by MH team, till a) psych bed available
b) he’s able to exercise some control and no longer needs bed

General medical ward bed offered (as last year) I refused.

Dr coming Monday to review and re-prescribe.

He’s not leaving the house.

@JasminePanache

I printed off the form. Thank you. I’ve completed it with DS “in case”.

My son has ASD and was sectioned. I have very mixed feelings about it. On the one hand we couldn't cope with his behaviour. He had become stuck in a spiral of behaviour. On the other hand the provision was not therapeutic in the way it should have been. He did come out better than he went in. However it was very hard and you need to have a plan for coming out from day 1.
I would say:

1. Find out what help he could get at home first. I think I would look at private psych before anything else. I found local camhs dreadful.
2. Look at the hospital carefully. Some are good. Some are awful. It is no good telling you anything different.
3. Stay local as possible. I think being able to visit and advocate for him is crucial.

You must be sick with worry and exhaustion. Hang in there 💐

Your son needs specialist help that you are not able to give. That's not abandoning him, it's helping him.

OCD action or OCD U.K. might be alhelpful organisations to talk to. They also have details of specialist NHS OCD centres that might be more appropriate for him than a general MH hospital if you/he can access them.

www.ocduk.org/overcoming-ocd/accessing-ocd-treatment/accessing-ocd-treatment-through-the-nhs/specialist-ocd-treatment-services/

I have been thinking of you and your son, and hoping things have stabilised for you both.

wishing you well from afar

I haven't read the full thread but has he seen an OT?

I would strongly suggest you pay private for one with knowledge of ND as this may be resolvable.

No. No OT. Will look into that.

To be honest, it’s a shit show, pardon my language. I am so weary I will come back to update when I have a chance x

@lifeturnsonadime how would an OT resolve OCD? Genuinely interested, we had OT for ASC not for OCD (dc had both , sectioned for OCD). OT was useful but not for OCD.

For my daughter the OT helped with regulation around anxieties with food and hygiene.

The issue was not just anxiety but proprioception, in that my daughter wasn't aware of the amount of a product she was using from a sensory as well as an anxiety perspective. I appreciate this might not work for all but it really helped my DDs OCD which was becoming an overwhelming issue for her.

Having a demonstration and strategies about the amount of a product to use at a particular time was helpful to her.