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 have just watched this. It is absolutely the same experience we have had. It is just chance really that Sophie is still alive and their wonderful son is not. I am so sorry DishingOutDone that you are going through it too. From a bit further down the line I would say that if there is any way you can get money together for private help, get it. Don't wait. 12 months is just too long.

I had to get a private diagnosis to force CAMHS to agree to refer to a specialist national centre (DD has an unusual condition). Then they still tried to prevent the referral, they've never accepted her diagnosis and on that basis are now still in charge of moving her to adult services - no one in adult services has any experience with her condition but they are still insisting on being involved! But yes, sadly I always advise everyone who can to get a private diagnosis from a forensic specialist and then use that to force the CCG to refer to national services (in our case a large London hospital).

Anyway, sorry, I'm ranting now!! So glad you have got some action at last well done!

@SupportforSophie

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.

Oh well done. Well done. Yourself and your daughter. I'm very proud of you.

This could happen to any parent and mother, and I've had contact with it myself, more than I would wish.
Mental health services need more money, compassion and care.

So sorry you and your daughter have been through so much.Is it okay if I pm you I’m from the area mentioned and have had similar experiences with my daughter.

I’m so pleased to see your latest comment. All best wishes.

She's not going to get the help she needs in there. You need to assess whether you think her risk of harming herself is still high and whether you can manage this at home in order to get her released to visit the private psychologist.

As a nearest relative you can request discharge.

www.mind.org.uk/information-support/legal-rights/nearest-relative/sectioning-and-guardianships/#CanMyNearestRelativeDischargeMeFromHospital

If denied you can go to tribunal if you apply within 28 days.

Good luck

Apologies for missing your update. Pleased to see you are making progress.

I would ask for MN to delete my post but the info may be of use to others so I am going to leave it.

God this sounds so tough and i can hear how desperate you are in your post.

Have you tried contacting her last school? I know that sounds odd but schools have a duty to map out paths for all children until they are 24 I believe, they may be able to help push for more specialised support.

I would definitely involve all also is media, local MPs everything you can BUT I wouldn't go on a hunger strike. You need to be strong in order to fight for your daughter and you can't do that if you fall ill.

I hope your daughter gets the help she needs very soon

I am autistic and was repeatedly sectioned last year for SH and SUiCiDE attempts

Mh services are rubbish and esp. rubbish fir autistics

(1) you need a CTR done ASAP . They won’t robs or have a clue what this is - phone National Autistic Society tomorrow - they will talk you through it. Will help nit just now but setting up plan fir the future.

(2) presumably section 3 - contact a mh solicitor (free for those on section - google mh solicitor for people on section) - ask them to help you drive the CTR process and to point out that under section 3 hospital are liable to TREAT not just detain.

If they can’t treat there, she needs moving to a facility that can/ get in people ASAP

Good luck

www.england.nhs.uk/learning-disabilities/care/ctr/

This has links for ‘care and treatment review’. CTR

It is designed for autistic people and made everyone stop and think about my needs.
It was a game changer for me. My husband requested it , pushed hard to get it sorted as hospital didn’t have a clue what it was / everything difficult because of covid - he pushed and pushed and it got clinicians who were autistic specialists involved and who could help me.

Good luck

That's interesting @Whinniechapelmountain thanks for posting - I hadn't heard of that before.

Just picking this up again after the weekend
@Whocareswherewego76 yes of course
@Whinniechapelmountain: thank you. We have had a CTR which I didn't know anything about either until last year. We even have recommendations. Our services have pointed out that these are only "but at least it gives us a concrete base to work from. I don't think I would be at even this stage without it, it was essential. The issue now is making services carry out the recommendations and holding them to account if they don't ...

The hospital will be supporting your daughter to recover.

The hospital are failing this young woman and thousands of other very sick patients.

The NHS wouldn't get away with refusing to provide treatment if DD had cancer.

OP, your best bet is to get this in front of a judge. Keep plugging for that.

I'm in awe of all the posters and op who are having to, or previously had to fight this battle.

We have a dc in teens being referred to camhs and just getting the referral made in a timely manner has been frustrating. To know its a journey that won't get easier is deflating.

Your actions will help so many others, thank you.

Best wishes to all the family members that posters are trying to help and support, hope their journey is positive.