daughter in mental hospital but not getting any help - I'm desperate

[SupportforSophie]

My 19 year old daughter is autistic and has ADHD. She also has recurrent depressive disorder and complex PTSD as a result of years of neglect from health care providers.
She has been in 6 psychiatric units and sectioned 9 times because of repeated attempts on her life.

She has been in her current mental hospital for 82 days. In that time she has had one therapeutic session with a psychologist who then informed her she couldn't work with her.
She is being watched 24 hours a day on an arm's length one to one basis because they don't understand her presentation of autism and don't know what to do to help her.
There is no plan in place for what happens next.
I have offered to pay for a specialist clinical psychologist to have sessions with my daughter remotely. She is someone who has seen my daughter before and is happy to work with her but the hospital are refusing to allow it even though they don''t have any alternative suggestions.
We suggested to our clinical commissioning group in May an organisation who could work with my daughter to help her. The CCG are only just taking steps to commission them and we don't know if the hospital will let them work with her either.
There is yet another meeting on Thursday which I have pushed for, but I don't know who is going or whether any decisions will be made. My daughter has reached the end of what she can cope with and after Thursday is likely to shut off completely if nothing happens. Noone answers my emails and I am desperate. I am thinking of starting a facebook page, twitter campaign and if nothing happens on Thursday, of going on hunger strike until a plan is put in place to help my daughter. Does this sound mad? I don't know what else to do. I've tried the legal route, written to our MP, made complaints. Nothing ever happens and I don't think my daughter will survive much longer as things are.

I wish I had something helpful to comment but I’m afraid I don’t but I didn’t want to read and run.

Big big hugs xx

I'm so sorry. I really hope someone can come along with useful advice for you soon. Big hugs

I know I maybe completely wrong here, but could citizens advise help at all? I really hope your daughter gets the help she needs bless her. Sending my thoughts op

This sounds incredibly tough. Were your complaints formal or through PALS? Have you made formal complaints about all the parties?

Are there healthcare lawyers you can get advice from? Is there an independent advocate or similar you can try?

Wild idea but could you move house near a hospital that has been CQC outstanding or is known to have services you need?

I am so sorry to hear this. The National Autistic Society have some ability to support you all.

www.autism.org.uk/what-we-do/help-and-support/autism-inpatient-mental-health-service

Don’t go on hunger strike as you’ll then be in no position to help your daughter!
Your and her situation sounds hellish, the only thing I can suggest is that if Thursday brings nothing, you escalate up the tree…who is the person who will make the decision on Thursday answerable to? Who are they answerable to and so on.

I’ve no idea how it works with health care, but I had to do exactly this with social work when they couldn’t:wouldn’t think outside the box for care for my mum, because she didn’t fit any boxes.
I ended up in direct conversation with the Director of Social Work who was horrified at his staff’s rigidity, and it got sorted.
Any other issues or concerns we had went straight to him, and a lot of processes were changed in the back of my mum’s case.
I’m not scared of what people think of me when it comes to getting what my family need

Thank you so much for your supportive responses. It is good just to know there are people out there. We have a solicitor who has written countless letters so are now dealing with people whose job title is things like manager or clinical director. I think the problem is they don't want to acknowledge that people with ASD need specialist help and they are hoping we will just go away. Thank you all again though

I’d echo PALS. Also, has your daughter got a social worker? I found with my mental illness/section the social worker was more helpful than the medical ppl.

She is working with an independent social worker as our LA doesn't have any of their own who have experience with autism. She is lovely but the commissioners just don't act on her recommendations. I wish we'd moved to a different area years ago. Does anyone else have experience of services for people with ASD in Buckinghamshire? It is so bad I can't believe we are the only ones struggling here

Erdelyi thank you for your suggestion. I have contacted the NAS before but will do again

There's a man called Mark Neary who had a lengthy battle to get his son Steven the help he needed. He had a FB page called Get Steven Home, but that's very quiet now Stephen is thankfully no longer under section. However if you message Mark directly, I'm sure he'll try to point you in the right direction of someone that can help.

(Don't think I can post a link, but if you search the name, most of his posts are about Steven and social care.)

I will look for him now thank you

What specific support do you want for your daughter. What do you think needs to be put in place to help her.

A start would be someone at the hospital cleaning the toilet she is expected to use. She needs talking therapy with someone who understands her presentation of autism and can help her understand why she feels the way she does about herself. She needs support for her PTSD.

She then needs to work with someone who can look at what she needs to be able to live in the community and start to build a life around the things she enjoys - art, music, maths

Social workers in disabilities and mental health services deal with autism all the time.

The hospital will be supporting your daughter to recover.

She is very ill and often recovery does take time.

I would focus your efforts on what needs to be in place for when she gets out. If the hospital can't offer her any therapy, would she be better off receiving therapy outside the hospital in supported accommodation?
Given she has been on section 3, she has a right to aftercare and accommodation. I think you need an allocated social worker, a provider who can accommodate her and a solicitor. Personally I would start looking for somewhere she can be accommodated and cared for in the community. I would also make a complaint that the hospital is not meeting her needs. I also simply cannot believe your local authority doesn't have a suitably qualified social worker. Ask if they have a consultant social worker.

I am so sorry for what you are going through. I have been through something similar and it is so difficult to know who you should be talking to to make things better.

She is currently a risk to herself but with the right support I really believe that can decrease. It has done in the past but then she moved to adult services and all the support she was getting fell away

The community mental health team will support her recovery back into the community.

Dirty toilets are unacceptable and something to complain about but people with mental health problems can have problems with continence and some are very confused so not nice but can happen.

I don't know what to say to you but, like others, didn't want to read and run.

You and your daughter have my sympathy. The mental health services in general, in this country, are woefully underfunded. Most of the time, all that is offered is medication.

Your daughter's situation is different from others because she is autistic; specialism in autism should be a stand alone section.

I really hope her treatment and care plan improves and, if I was the 'Good Fairy', (or believed in one), I would grant you millions so that you could organise excellent care for your daughter yourself.

Sadly I think people often overestimate the level of support available, even when someone is under section in hospital. Many psych units are assessment only, so don’t have the resources to provide therapy. They are little more than prisons, and HCAs are sadly no more effective than prison wardens. The whole system needs a serious overhaul. So sorry for the situation your daughter is in. I hope she gets the help she needs.
Does she have an EHCP? If she has potential to continue learning and developing skills, then she may be entitled to an educational/work placement which could help her reintegrate into the community. You’ll likely have to fight for whatever she is entitled to, but a good social worker should be able to help. Make sure she has access to an advocate in hospital who can help her express what she wants/needs for her recovery.

Also depending on whether she has mental capacity or not (does it fluctuate? does she understand how to manage her health and well-being? does she understand the purpose of her treatment and how it relates to her symptoms) you may wish to apply for a deputyship

Does your daughter have good language skills and ability to communicate and is she psychologically minded and does she want therapy? Talking therapy isn't for everyone?

I'm not sure Rita has any recent experience of mental health services, especially for autistic women. Autism is used as a reason to refuse mental health support, and severe mental illness a reason to refuse autism support. It's an endless cycle of refer and refuse.

I'm so sorry for the situation you and Sophie are in OP.

I'm sorry you are experiencing this.

I've got a variety of avenues to try, for help for yourself and daughter. Will put a note next to each to explain why I'm suggesting it.

First up, don't know where you are in the country and you are not able to say in this thread probably, so if these aren't in your area, please do still have a look at their websites/and phone them as they may be able to suggest something else.

1. PALS as someone suggested
2. Sounds like you need an advocate. www.theadvocacypeople.org.uk/seap

This advocacy service operates in your area. I would contact them straight away, but also has stuff on their website as to how to make a complaint to the NHS. You would be surprised how quickly things get done when an outside organisation is involved. I have used them myself with a doctor's surgery.

1. Talk to Mind and Mindline (Mind has a legal advice service so that you can better know your own rights as a mum and your daughters rights)

1. it is a long distance away but I was very impressed with the Retreat Centre in York. Still deals with trauma but also you can get an NHS referral if you can get someone to refer your datheretreatyork.org.uk/

daughter

1. I would contact your M.P anyway with a complaint.

1. Also what spings to mind is the website Young Minds

1. Also if she has been affected by sexual assault and trauma you mmight contact the Bridge in Bristol

Tel: 0117 342 6999

Thinking of you both.

Beige