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.

Sorry I started writing the post and then realised you had said Buckinghamshire. So SEAP advocacy is in your area

theretreatyork.org.uk/childrens-services/

sorry also realised you had already tried M.P.

www.youngminds.org.uk/

Parent helpline and webchat on Young Minds so you should get help quickly there

This is local to you:
www.healthandwellbeingbucks.org/s4s/WhereILive/Council?pageId=1392

But I second Young Minds. You initially speak to a general adviser but they can escalate your case and you can get an appointment to speak directly to a psychiatrist.

My DD is 18 very unwell and what you are going through is my biggest fear - I'm disgusted with posters saying things like "the hospital will take care of her" - when you have a young person in that position you are out of your own mind with worry because these units are like prisons and as OP is documenting here, the system is set up to block any reasonable discussion. OP have you spoken directly to the CCG?

Just to clarify the link to the organisation in Buckinghamshire is to allow the OP to apply for a mental health advocate for her daughter, which is a statutory service contracted out to voluntary sector organisations. The IMHA can visit the person in hospital and then speak on their behalf.

Also try the ADHD Foundation - adhdfoundation.org.uk

This is the direct email for their CEO Tony Lloyd he is amazing - tell him what you've told us here: [email protected]

thank you everyone for your suggestions. I will look at these - I haven't been in touch with Young Minds so will try them next. Also the Advocacy suggestion - she is very articulate and talking therapy can work really well for her but it has to be someone who "gets" her and the way her mind works and is able to use a range of different techniques - but also someone who is essentially kind. I have been communicating with one of the Heads of Service at the CCG. They just don't seem to
care

DishingOutDone - just seen your message too. I'm emailing him right now

This is what I have started to put together
www.facebook.com/KatyLeman

I wish you all the best, please stay strong and keep shouting.
When I was nineteen my best friend died in a supposedly secure unit.

I will try my best to help you on here, and will check.

I stress, keep shouting, keep publicising. Keep accessing support and press interest. Keep posting on mumsnet.

The state of mental health services in this country is beyond appalling. It was bad before covid as the tories didn't give a shit. Labour wasn't much better either, to be fair.

It is sadly up to us mums to fight for our kids.

I have thought about you at several times today. Please keep going. Keep fierce. You will get there.

Bump.

Daughter is entitled to a MH solicitor. You can instruct one yourself on her behalf. Should be legal aid funded so won't have to pay. Speak to a solicitor ASAP about them not providing adequate care or treatment, and their refusal to allow a clinical psychologist to see her.

I just looked at your Facebook page. Im so sorry your daughter is left in such an appaling place. Have you been able to visit her?

Just so sorry to read this.very very similar situations with my dsb - there are not enough experienced people to deal with thee situations

Alexis Quinn is an author who had a similar experience to your dd and she is on twitter and might link to useful organisations.

Your dd is in an awful situation and she deserves so much more, but your support is incredibly valuable - please take some time to look after yourself and acknowledge how hard you're working. It sounds incredibly frustrating.

thank you so much for all your supportive words. I will look at MH solicitors and at Alexis Quinn. I am so sorry to hear of others having difficult experiences too. It is hard when you are desperate to protect someone and feel utterly powerless to do so.

I’m sorry to hear this. Has your daughter had a care, education and treatment review? www.england.nhs.uk/learning-disabilities/care/ctr/care-education-and-treatment-reviews/

I have been visiting mental health institutions since I was six years old. People complained about the old asylums and some were truly awful but often they were safe places and had gardens and outdoor spaces and occupational therapy. They had awful treatments and my family member has had some of the worst treatment. Over the years the places and I have seen 6 different ones now, have got smaller and smaller as each successive government sells off it’s real estate for often a pittance to private housing developers. When someone is ill they need beauty, quiet, tranquillity and peace. If you campaign, campaign for that, professionals are doing what they can with what they have. We are all complicit in staying quiet when services are destroyed. No one wants to campaign for people with mental health problems until it is their family member.

Just seen this: chng.it/mRRQxTRRTS

Hi. Sorry you and your DD are going through this. First of all your DD is on the highest observation level so there must be some elevated risk there she is probably finding the environment very noisy and unsettled. Does your DD have a PBS plan ? And have you seen her support plans? A good PBS plan is a crucial step into stepping down and into community living. Does your DD have a social worker/ independent mental health advocate? Plans need to be started to look for appropriate accomodation for your DD for after discharge. Sadly recovery to community living can be a slow process , I've seen some people who have been on .level 4 OBS for over a year go down to unescorted leave and onto community living.

I'd also question the ward she is on quite often women with ASD.are placed on generic wards with mostly NT women. These wards can be noisy and women with ASD can be quite vulnerable.

Thank you again to you wonderful people who responded and gave me hope. I ended up finding the email addresses of the CEO of the Trust, the CCG, the Local Authority and the hospital group. It went from no-one in management planning on attending the meeting to 3 commissioners and the hospital director attending. They have promised to take the steps needed to let an expert clinical psychologist and the organisation that has been recommended to us work with her in the hospital. They have also promised to let Sophie attend her own MDTs on a weekly basis with a view to stepping down obs. And magically just before the meeting her bathroom was cleaned! I need to hold them to their promises but it feels like we have stepped back from the brink. You know what else? Having always been very hesitant about speaking out publicly on social media - I've decided it is time to use it to fight for others in Sophie's situation.

What a brilliant update to read OP! I wonder if some high profile people who have experienced some similar situations might help to publicise your campaign to improve things for people who need support from mental health services. I’m thinking maybe Stephen Fry and Chris Packham for a start.
I have a young child with ASD and a couple of family members who’ve had awful “treatment” from the NHS when suicidal. It really scares me that my DC could end up in a similar situation.
I hope Sophie is feeling more positive now and gets the help she’s needs and deserves.

I'm just been watching this on the BBC:

www.bbc.co.uk/news/av/education-51877434

Upsetting account of a young man who died in supported accommodation aged only 19. He actually wanted to be sectioned but listen to the way he was treated in hospital. To me, this is just another aspect of the same corrupt system that put @SupportforSophie's daughter in the facility where she is languishing now with no therapy. Basically its just a lock up. Had the poor boy in the news report got into one of these places he would have found the same lack of treatment and care (although I suppose at least he might be alive). At the end of the film it quotes someone as saying £75m has been put into mental health services. The same corrupt mental health services that denied him treatment and refused to help the OP's daughter.

Unless we have an admission that staff at all levels need to have their practice examined (because lets face it they are not going to examine it themselves!) they could shove a billion pounds in and it wont help, its just shoring up rotten wood. My DD spent 3 years with both of us trying to convince various CAMHS staff that she was ill, the act of that itself has completely traumatised her and as she waited so long, she has become much worse. When they finally agreed to refer her to a specialist unit we found a 12 month waiting list, which she remains on.

Sorry to hijack your thread OP and so glad you have managed to knock a few heads together this week. I hope things begin to improve for your DD now.