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.

Thank you for being understanding. It just breaks my heart to a million pieces seeing her like this. I just don't know how to help her 😞.

I don't ever want to be deemed as abusing my daughter as I love her with every ounce of my being and that was definitely not my intent, I just wanted to help her because she is suffering and it's painful to watch.

I don't know enough to comment on your situation but please complain as soon as possible to PALs also include the GP in the correspondence, and any other professionals that have been involved.

My daughter has been similar but not as bad.

She had an ADHD assessment ( often with ASD, mine was ASD) and adhd medication completely transformed her mood and crippling anxiety.

Anti depressants did nothing for her.

Honestly I doubt that there will be a medication that is the whole answer

I think it's more likely that some of the avoidance has become entrenched and needs more of a psychological/ OT approach to challenge this step by step. Avoidance is a powerful maintenance factor for anxiety and depression and nothing will improve if you spend all day in your bedroom avoiding the world. This needs some gentle challenge.

If no-one else will help then I'd suggest you try to work on some graded exposure at home. Tackle the least feared task first eg coming downstairs for x period of time and gradually extend that. Try to get her to sit with the anxiety until it dissipates and not run away. It has to be a goal that she is motivated for and her idea of what to tackle first.

The overcoming series is a good place to start

overcoming.co.uk/443/Overcoming-Anxiety---Kennerley

I don't know loads about LD services but I would suggest that DD needs to have some goals and some thoughts about how those can be achieved eg does she want to study or to work? Can she access a sheltered work placement or something like that?

An SSRI antidepressant is the NICE recommended first line for anxiety disorders and there are many of those so find one that she can take at the top dose ongoing. After that there are few medications that theres any decent evidence base for and most of them have significant harms like the olanzapine and other antipsychotics. Psychotherapy ie CBT is much more effective than more medication and both together are best but the therapy requires motivation and engagement

That's what I thought too but she was put on Mirtazapine which I know isn't an SSRI (can't remember what category it falls into now). She did try Sertraline before she got admitted but that didn't agree with her.

Also, this is the problem we have, she doesn't want to engage with anybody or anything. So even if I go into her bedroom, she will turn her head away and not look at me. With her carers, she doesn't want to engage in any activities and just turns away towards the wall on her bed.

Is she in ND burnout?

Looks very similar to depression/anxiety

I suggested this a while back to the psychologist that she was under at the time as what I'd read about autistic burnout seemed to tick the boxes. The psychologist said that if it was that, they would have picked up on it and known so I don't know.

It does keep coming back to me though.

I just want to wish you all the best OP.
I think too many autistic young people are put on heavy psychiatric medication after a breakdown/burnout, and it is not always the right pathway. Far from it. It creates its own set of problems. There needs to be somuch more understanding around autism and LD.
I thought things were changing since the Oliver Mcgowan tragedy.

I’d be amazed if they had picked up
on it. They hardly acknowledge it.

The refusal to engage sounds familiar. It’s that that they won’t. they can’t/

The best thing is to remove all demands. All these psychologists could be making it worse.

What was she like prior to this? She sounds severely burnt out to me. Even the age is right.

I sympathise hugely. You MUST NOT alter your daughter’s medication without medical advice. It is completely inappropriate and would trigger a safe guarding referral .

You sound like a lovely mum so I hope my comments haven't upset you, it's just my professional head knows how things can be misconstrued out of desperation.

Is she able to access a crisis team at all?

If you feel the relationship with the psychiatrist isn't working then you are perfectly entitled to ask that your DD's case be transferred to a colleague. Most psychiatrists I've encountered are perfectly happy to entertain this because they first of all recognise that a good relationship is helpful for both parties, but also, they don't want to have to deal with unhappy and upset patients and relatives.

You have to be prepared though that even if responsibility for your DD's treatment is handed to a different doctor, they may still come to the exact same conclusions and insist on the same course of treatment.

As PP's have said, you really shouldn't be making unilateral decisions about your DD's medication, as well intentioned as it is. Antipsychotics are also prescribed for Anxiety and Depression, so just because it's primary use is for treatment of Schizophrenia and Bipolar symptoms that does not mean it's somehow inappropriate for your DD. And yes, even though DD lacks capacity to make informed decisions about her own medication, that does not mean psychiatry will simply accept you doing so on her behalf without any consultation. You are in danger of escalating the situation and triggering safeguarding alarms, and you need to bear in mind that doctors do have the option for compulsory treatment orders when they have reason to suspect a patient might not receive their medication otherwise.

@olympicsrock I understand what you are saying. It's just so scary when you know something isn't agreeing with someone (as in side effects etc) and could be making them worse. Do you have any suggestions on how to effectively get my concerns across to the psychiatrist?

@rubyrubyrubyrubymurray Thank you ☺️. No, you haven't upset me at all, I am grateful for advice from other medical professionals that this could be construed as a safeguarding thing. Would you be able to provide anymore information on that? Do you mean like they could remove her from my care etc? It just hurts so much seeing her suffer. There doesn't seem to be anything she can access at the moment, I keep trying but am not getting any support from anywhere.

@XDownwiththissortofthingX He's a great psychiatrist and I get on with him fine. I just feel that he hasn't heard my concerns about this medication she is on. I really feel 100% in my heart and gut that this isn't right for her. Thank you for your advice, it has made me stop and pause and I am grateful to everyone for what they have said.

I will reinstate her morning dose tomorrow and try my best to get my concerns across to psychiatry.

Is 2.5 mg a whole tablet? I would have got a tablet cutter and cut it in quarters and given 3/4 of a tablet for at least a week if not two then 1/2, then 1/4 each for at least a week. That's tapering, you just halved the dose. Some medications that's fine, others very much not.

Mirtazapine can be really good for anxiety, it's a slightly unusual choice as the second antidepressant to trial. Did the doctor say why they went to this and not another SSRI first? Was she having trouble sleeping?

What does she do all day in her room, is she just lying down eyes closed light off, does/would she watch a screen or TV if she had one there? Does she sleep a lot? It could well be burn out, that tends to make me feel like the whole world is attacking me, everything is too bright and too loud and too overwhelming and just want the whole world to go away and leave me alone.

My DC are all Autistic, my DD also has anxiety and has been suicidal in the past. It's an incredibly hard place to be. I felt like I was groping in the dark most of the time and completely alone making all these decisions I didn't know how to make, doubting and questioning myself, desperately trying to fix things for her, make the world easier for her. I still feel that at times wifh all my kids because of their SEN. .LD would add another layer of complexity to that. What you're dealing with it's so much and it's unbelievably hard and overwhelming. 0

Beware that anti psychotics can trigger Akisthisia. Even on low doses.

Nobody wants a loved one to be on anti psychotics, so the psychiatrist will be used to people who take them and their loved ones wanting to come off them.

The side effects are scary and it can be difficult to see if they’re making an impact - I’ve got personal experience of that with my sister. It’s really tough.

I’d second what everyone else has said about exploring the possibility of burnout and leaving her meds at the currently prescribed dose, for now. It sounds like it would not help your daughter at all for you to be deemed to be abusing or neglecting her and therefore her to be removed from your care.

The pushback to S17 care is likely to be that she’s not engaging and turns away. Is there anything that makes that better? Did she engage with IST?

I haven’t read every response, but have you tried contacting your local M.P? That’s what I’ve had to do for my daughter as we are in the wrong postcode for help for her neurological condition, it’s criminal, we’re only 12 miles away from the hospital and have no neurologists at ours. She’s 28 and left on the scrap heap, stuck on benefits because no one will help her. Yet they want people with health issues to get back into the workplace, how can they do that when the NHS abandons them, I feel your pain, it’s an abomination!

Hi OP I'm on olanzapine for depression, 5mg a day, 2.5 is a tiny dose. Your GP might be able to help with coming off it, mine has been able to help with this after getting no support from CMHT with it.

I expect at that low a dose they would just suggest stopping, I was told to go from 5 to 2.5 for a few weeks and then stop. I would try speaking to the GPs.

You are right to be concerned about being on it long term as it can cause metabolic problems.

You can't stop her meds like that. Some of these drugs have dangerous withdrawal symptoms and should only be weaned off under supervision. No one will trust you with her again if you aren't compliant with her medication. Talk to the consultant.

I haven't stopped her medication. I put her back on the dose that she was on when she was discharged from hospital.

However, after getting advice on here, which I am grateful for, I am going consult with her psychiatrist and see if he will listen to my concerns.

I've contacted the psychiatrist explaining everything and I was open and up front with him but also explained my reasoning. Hopefully hear from him tomorrow or next week.

I will try and catch up on the posts I missed earlier.

Has she been officially deemed to lack all capacity? I don't mean because she was on a section

Even someone with a learning disability is deemed to have capacity until a capacity assessment has been undertaken