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.

This sounds a very stressful situation for you and your DD - I'm so sorry.

I can't offer any suggestions for coming off the antipsychotic - they are powerful drugs.

My one question - was she detained under section 3 of the MHA ? If so she is subject to section 117 which requires the NHS in conjunction with social services to provide suitable aftercare on discharge from hospital. She is entitled to aftercare. If that hasn't happened - yes complain to the NHS and also the Care Quality Commission who monitor the Mental Health Act.

If detained under S2 - I'm assuming you've approached your local social services, GP etc. - yes most definitively complain.

best wishes to your DD and yourself

That sounds awful. You must feel very abandoned.
I would be hesitant about stopping her meds though. Anti psychotics are sometimes used for ‘treatment resistant’ depression which it sounds like she might have. If they were started by doctors who she was under for 7 months as an inpatient then they must have known her pretty well and had good reasons. If you stop them and she gets worse then she might end up in hospital again.
Does she have a GP who could help coordinate?
maybe you do need to start a complaint. That might kick someone into action. Do you still have the details of the intensive team she was under? They might have suggestions.
Good luck though. It sounds miserable for both of you.

Keep fighting for support but do not stop her meds without medical approval. You need to be seen to be acting in her best interests. By going against medical advice you arguably are not.

@DPotter She was first detained under s2 and then under s3. I knew about the 117 aftercare but for some reason only thought it applied to support in the form of carers etc. Does it also apply to medical aftercare too?

@Bobbie12345 The reasons she was put on the antipsychotics was to enhance the effects of her antidepressant and increase her appetite as she was barely eating anything at that point. When she started on them, they did nothing to improve her mood but they made her worse mentally unfortunately. I am doing it very slowly and keeping a close eye on everything. It's not a drug I want her on if I'm being honest as the side effects are awful for her. I have been in contact with the team she was under before but they can't seem to point me in the right direction.

@Hairyfairy01 I completely understand what you are saying and in most circumstances, I would totally Agee with you but I am reducing and eventually stopping the antipsychotics based upon what I believe is in her best interests. I have done a lot of research on the drug and observed DDs behaviour from when she was put on it and it is having a negative impact on her. I have spoken to her psychiatrist to try and explain that we need to try something different because this current medication is not working. I explained how DD doesn't have a life and is practically in a vegetative state most of the time. Despite reading on NHS website that the usual practice is to find a drug that works, which could involve trying numerous different ones, her psychiatrist refuses to. I can't stand by and let her suffer like this anymore, it's heartbreaking. Plus I care for her 24/7 so see the effect it is having on her, whereas the psychiatrist hasn't seen her for almost a year. He also has nothing to compare her presentation to as he didn't know her before she became unwell. One of the side effects of this drug can be sudden death and I just don't want her on it anymore. I've halved her dose and she's been on that for a week now and there are no negative effects. There is slight improvement. I do understand what you are saying though but I have looked into this in depth and made sure it's safe etc.

Are you happy to share what health board/trust you sit under? If she has an Intellectual Disability/Learning Disability, I would assume she would be under the care of the Community Learning Disability Team on discharge from intensive outreach. Definitely complain 100%, to the mental welfare commission and NHS. If you haven't yet, contact GP for a mental health referral back into the Community LD teams for mental health support for her.

I trust you have done your research, but just know stopping some meds is dangerous and needs to be slowly tapered off, usually by reducing strength rather than dropping a dose. I don't know your daughters meds or dosage or anything, this is mostly for anyone reading this and wanting to do the same.

However, it is very frustrating when medical professionals aren't working with you. She should have Section 117 aftercare, but while thus does cover any services required to manage her mental health, it's not prescriptive (I.e. must be under CMHT etc) so sounds like she has a nominal psychiatrist and they are assuming that is enough

If you have not already you could try complaining to your Integrated Care Board (ICB), who are responsible for arranging and paying for the health treatment. You've probably come across STOMP too in your research (Stopping The Over Medicalisation of People with Learning Disabilities) but if not it might lend weight to your argument. I think the biggest issue is she does not seem to have been offered psychological support, which even if the medication had been necessary, if there were ongoing issue either psychology or OT could have been offered to see what could be done about addressing the residual problems and increasing her engagement in activities.

Just be VERY careful messing with medication doses without any medical support

If she was an in patient for 7 months then her medication needs would have been assessed regularly.....you say they're doing nothing but if she needed sectioning then she must have been very ill. If she improved enough to go home then it's possible the medication has helped......stopping it without medical supervision is risky. Antipsychotics are not just for schizophrenia they have many other uses

Also halfing a dose??? That is not tapering safely - really, please get some advice, not just internet 'research'

Drugs like antipsychotics work on a cumulative affect

Are you medically trained?
You could be acting unlawfully by removing medication from a vulnerable person. Could be seen as a safeguarding issue if you deny her access to medication.

I probably should have explained better. When she came out of hospital, she was on 2.5mg Olanzapine every evening. I then requested an increase, which was then increased to 2.5mg in the morning and 2.5mg in the evening. All I have done is dropped the morning dose so it's back to what she was on when she was discharged. 2.5mg is the smallest dose possible, so I have reduced it the same amount that she was increased.

This is still not tapering her off though, is it?

I understand what you are saying but I personally find it a safeguarding issue to keep her over medicated and on a drug that is harmful to her. It's negligent of the psychiatrist to just dump her on medication without adequate reviews and taking concerns on board.

How could I decrease it even slower when the lowest possible dose is 2.5mg? She's been off the morning dose a week now and showing signs of improvement.

I don't know because I'm not medically trained. Neither are you.

Something I am an expert in is my daughter and I know this drug is causing her harm. Would you give your child something you knew was harming them even if a doctor told you to?

I just wanted to add that I didn't mean for that to come across defensive but this is something that I feel incredibly strongly about and it's not just done on a whim. Her psychiatrist has told me previously we can increase or decrease this medication at any time. All that's happening right now is that she is back on the dose she was on when she was discharged.

S117 is a legal entitlement to healthcare as well as to social care. Patients with a S117 aftercare entitlement cannot be discharged from secondary care in my area (not sure if that's the same everywhere)

Write to PALS at the mental health trust and say that your daughter was illegally discharged in breach of the statutory S117 aftercare duty and that should put a rocket up them.

People have sued for breach of the S117 duty.

It is unlikely the olanzapine is making her mental health worse but it does have a range of unpleasant side effects such as sedation and weight gain and it should be monitored for risk be benefit. Could you not at least see the GP and tell them about your plan of reducing it? They should be able to make a referral to the MH Trust and seek medication guidance from the psychiatrist. It is indeed not great to be messing around with this stuff with no oversight especially as it is you making a choice for someone else not yourself. You need to be seen to be acting in her best interests.

If you are saying 'her psychiatrist' then she has one so why not contact that person to ask for help?

@ThePure Thank you for the clarification about the s117 aftercare. I will contact her psychiatrist today with my plans and explain the situation.

I've already had a conversation with him - not very helpful unfortunately

What changed between her being discharged from hospital and you asking for her dose increase ( which you have now decreased again). It sounds as though she was doing okay with the community support , until it was removed? So is it the lack of professional input now that’s the main issue? I don’t think messing around with medication yourself is the way forward.

Yes contact him and say you are going to make a complaint and I suspect he might do something

Is this a general adult psychiatrist or a learning disability one?

If she is under the psych and has not been discharged then the S117 duty is being fulfilled by him reviewing her.

You need to be clear what services she needs that she is not getting?

• medication reviews
• psychotherapy
• mental health nurse/ OT/ support worker
• social care package

I know you say she has autism but does she have a learning disability ie intellectual impairment associated with the autism? If she doesn't have an LD and is an adult then you are going to be limited in your ability to act on her behalf and I'm afraid you may be ignored unless she can make her own views clear.

Reasons for not providing the above services would be

• she has capacity and she refuses them
• she does not have goals that she wants to work towards (her own goals given she is an adult not yours). The NHS will not provide unlimited support eg a worker to just come around for general support there needs to be an agreed goal for them to work on and a time frame to achieve it. If it's support for the status quo it's social care
• interventions have been tried and failed and there is no change to circumstances that means repeating the intervention would have a better outcome.

Note that autism is not a mental illness per the definition of most mental health trusts so they are not commissioned to provide services for autism only for the depression/ anxiety aspect. If you request they provide support for autism related issues they have a leg to stand on to refuse.

I am not saying this is right BTW so don't shoot the messenger just trying to suggest reasons why she might not be getting a service.

If the psych gave you medical advice not to reduce the meds and you then do so then I do worry this could be seen as a safeguarding issue

If it's your daughter's own decision to stop taking them then that is different. She is allowed to go against medical advice but if you do so on her behalf it can be seen as neglect. Tread carefully

@ThePure I just want to say thank you for being so kind about all of this. It's such an emotional and hard topic to navigate as I only want what is best for my daughter and I want her back to how she used to be for her own sake. It breaks my heart seeing how she is at the moment.

It is an LD psychiatrist she is under. She's not getting any form of psychotherapy input or any community nursing either. There's just no support there to help her recovery.

You are right and I will approach her psychiatrist about the situation but I will explain how strongly I feel about her coming off the antipsychotics and will list all the negative effects it has on her.

She has a moderate learning disability and possible Autism. She's been on the waiting list for assessment for around 18 months now. She doesn't have capacity to consent to treatment or refuse.

I would say that interventions have been tried and failed which is another reason I was going down the medication route. I'm feeling perhaps she isn't on the right medication and maybe needs to try something different.

OP, as a mother you have my entire empathy and I cannot even begin to imagine the impact this has made on both your lives. However, as a HCP I would strongly urge you to rethink intervening in her medication. At the risk of being hopefully, extreme, imagine something terrible happened and you are found to have been withholding her medication, because although you may not realise it, technically you are doing just that. This is a form of abuse.
I am by no means under the illusion the NHS services are doing what they say they will or that it isn't a complete and utter struggle to access help.