Abandoned by the NHS

[WhereIsMyDaughter]

My DD (aged 20, with a learning disability, autism, and severe anxiety and depression) was sectioned last year for 7 months. She was put on antipsychotics without a best interests meeting being held and without it being discussed with me as her nearest relative under the MHA.

She was discharged from hospital in September last year and she had amazing support from the Intensive Support Team. However, they are just a short term thing to prevent re-admission to hospital. They discharged her in March this year and other community services were meant to pick it up and offer support.

Unfortunately since IST discharged her, I have had no professional input whatsoever and have been left to my own devices with DD. She's essentially a prisoner in her own bedroom as she is too scared to walk around, too scared to go downstairs and go outside. She has no quality of life whatsoever and still needs quite intense professional input. I have chased this up numerous times but no one seems to know who is doing what and what services should be in place for DD.

Since I have been left to deal with this by myself, I have decided to do it my way now. I have followed all professionals advice for the last year but there has been no improvement in my DD. Considering everyone has abandoned her, I am going to try what I think might work for her and the first thing is getting her off the antipsychotic. This is a medication for schizophrenia and manic episodes in bipolar disorder, neither of which DD has. I fully believe this drug is stopping her from functioning at all. I've already dropped the morning dose and am seeing small improvements but there is still a long way to go.

How would I go about doing some form of therapy with her? I'm determined to get her better even if it kills me. I'm even considering submitting a complaint to the NHS considering how there has been no follow up or support at all for her.

I guess I just needed to get it all out and hopefully talk to other parents who have been through similar.

The last capacity assessment was a year ago but they still say that she lacks capacity to consent to treatment.

Was that whilst she was under section though?

Yes it would have been.

This is what I thought too and IST did mention that the LD community team would pick it up but there has been no support at all for 6 months.

We are in Derbyshire if that helps at all?

If you have a psychiatrist then he has to work for a team so QED she has to be open to a team. A psych review irregularly may be all the input that the team will currently give because of no other useful intervention being identified. You do say she has a care package that she doesn't engage with. What does the support look like that you feel she needs?

I know nothing about autistic burnout but if it's that then it sounds as though less pushing her is good from what others say. Maybe give it a time limited period of total rest and trying not to push anything for x period and see if paradoxically that makes things better.

Re meds I would say to the psych that you don't see any benefits and she does have side effects could you have a trial without them and see how it goes? You expressing a very strong view against may cause them to take your views less seriously as it sounds unbalanced and as though you would be against them whether there was benefit or not (maybe not true but it sounds like that)

I would definitely make a complaint with the Trust or contact pals at the very least. No point contacting the MP to be honest. All they will do is pass onto the Trust and ask for a response from the same people who would investigate a complaint. Agree also with others to look into the 117 aftercare entitlement.

@ThePure I feel that she should have psychological input in the form of therapy. It's going to take time and I feel that they shouldn't just give up on her, which I feel like they have done.

I agree that if it is burnout, she needs no demands at all but that would mean getting rid of the carers because she views that as a demand. Mind you, saying that, her care package will be dropping to only 2 mornings a week from 5 due to carers leaving but this may do her good.

I have said something similar to the psychiatrist as to what you suggested. I put all my reasons forward, explained how the side effects were affecting her and explained the improvements I have seen since reducing the dose. I've decided to not reintroduce the morning dose as she is doing absolutely fine without it. I would actually say she is doing even better so I'm going to leave things as is and see what the psychiatrist comes back with.

I'm prepared to take the risk of safeguarding escalations due to what I have done so far. I have to fight for her the best way I can.

Thank you, I will definitely consider it. Was thinking of waiting until I get a response from the psychiatrist before making a complaint to PALS.

Please do not taper or reduce her medication without professional input.
I work in crisis care and the possibility of relapse from coming off antipsychotic is high (regardless of the reason for prescribing them). They are powerful drugs and need to be tapered incredibly slowly and monitored by a professional.
I can understand your frustration and helplessness and sending you both lots of strength.