my daughter is at present in a psychiatric unit,she has Leigh’s disease,epilepsy and learning disabilities ,they say she has non organic psychosis yet she has brain damage in the basal ganglier,she went into hospital on 24/11/22 and now they are discussing discharge,she doesn’t eat and lives off ensure drinks in which her meds are covertly given, won’t shower and doesn’t sleep ,when she does sleep which is not very often she sleeps in her wheelchair,she is in no way well and to be honest is the same now as when she was admitted,she has also had more injuries while in there than at home.
My question is can she be forced into residential care? After talking to her sw yesterday it seems the hospital Is determined to discharge ,they have not achieved anything with her regarding medication to stop the delusions or voices they are very much still with her ,I’ve been given 3 options
Home with support
Supported living
Residential care
I can’t support her at home as she doesn’t sleep ,won’t eat,won’t wash and won’t come out of her room and refuses all meds.
I’m very worried she will be forced into residential care and I fear for her safety and well being.
Can anyone advise please?
Regards ,Karen
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Karen332
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speak to care quality commission if she lacks mental capacity get her an independent advocate and speak to the carers association and if you need or would like an independent social worker they can also be invaluable. Are they thinking of a mental health place for your daughter or a neurological unit or a home for brain injury what sort of placement are they thinking you need to fully understand what they’re thinking as this could reduce your anxiety. Hospitals are never ideal and if she’s going to be in the right service for her needs this would be much better so she can be assessed by people who understand and are experienced in what would help her best. I don’t know whether I’ve helped or not sorry I do hope this can get sorted soon for you and for your daughter
We were under the assumption that they would help with her antipsychotic medication and hopefully everything else would just fit into place as her psychiatrist said that given the way she was before this episode she will more than likely revert back to being sociable ,eating and taking her meds ,I see now that the psychiatrist involved with her at present at the unit really has no idea and is only just thinking of contacting her neurologist and hasn’t entertained the idea of talking to her metabolic consultant!!
I will look into all you have suggested and thanks
Leigh disease is a degenerative inherited neurometabolic disorder. When it presents in its onset stage in infancy other outcomes such as learning disability and the psychotic phases become the focus when seeking to treat episodes such as you describe of your daughter in adult life. Given that POSSIBLE or LIKELY causal diagnosis it may be understandable that the hospital would initiate a psychiatric profile to address taking medications and by the means you describe. What this means is that a general and reasonable medical view MAY be that the non organic profile for the psychosis was more likely - and I would presume that speaks to your concern about the late neurological response by the psychiatrist because your understanding predicates to the onset of Leigh disease.
The brain damage to the basal ganglia is unspecified in your comment - right or left region - yet one would assume that your knowledge of this insult or injury is a clinically documented fact and so it seems implausible that the psychiatrist would not know the detail of where your daughters’ presentations lie neurologically. Yet the question may be where original causality lies physiologically (neurologically), or else were triggered by an infant viral infection for example speaking to the Leigh disease.
The learning disability may simply be a progression of brain trauma or insult to the basal ganglia progressive of the outworking of Leigh disease.
Is the trauma or insult to the basal ganglia an event in its own right that precedes the presentation of onset Leigh disease?
Only your neurologist and your daughters medical records can properly answer that.
Clearly your daughter is not well. But that neurological ill health - muscle seizures that reduce mobility - and then developmental issues through life contributing to a general lack of mobility (the wheel chair) MAY not be directly contributing to the psychiatric ill health.
You seem to need to raise some questions with the relevant specialists you have made reference to so that you are better informed when you speak to your social worker again. The care assessment that is triggered by this hospital admission will NOT take account of any detail that you cannot express or at least make a reasonable reference to in the clinical opinion of your daughters health needs unless you trigger a CHC process by the social worker.
The three options you raise are self answered by your own omission of the first, and by determining precisely what would be in your daughters best interest and with which SHE can consent to when her psychosis subsides.
Always establish a proper and formal view of your daughters health needs from regulated and appropriately qualified health professionals. But I do hope that you can sense where to look yourself when asking questions.
My son is severely learning disabled with numerous secondary conditions. When I speak with his psychiatric neurologist or other medical professionals I have learned to answer my own anxieties by trying to determine the base line for causality. That way I can think more clearly and absorb more meaningful details that will help me look after my son.
have spoken to my daughters LDT nurse this morning and to be honest her and the sw are very concerned about the meeting and the thought of discharge with no improvement the psychiatrist in charge does not deal with LD so s asking for my daughters LD psychiatrist to intervene , I do not know what side of her basal ganglia is damaged I would have to look through any notes I have ,she became poorly at 3 yrs old with pyruvate dehydrogenase deficiency which led to Leigh’s this is what we have always been told from great Ormand street and Oxford university , I cannot understand why these drs have not been referred to whilst she is in hospital which leads me to worry so much
The LD nurse and the Social Worker are not able to express anything other than concern to a meaning that would be self evident to anyone. Namely, no clinical improvement to the mental health issues your daughter is experiencing since mid November of last year.
The fact remains that all the symptoms that you describe in your comments are behavioural in character. The deeper implication is rather stark for a psychiatrist on a mental health unit. And once he has determined by administration of medicine that there is no change and so perhaps no known (to him) explanation to your daughters presentation then he has a legal duty to discharge her back into the community unless he has reason to believe that her health would be at significant risk.
The Great Ormond Street Children's Hospital and the University of Oxford clinical opinion on the causality of the metabolic trigger for the Leigh disease does not remove that your daughter MAY have presented no global developmental symptoms until she was three or soon thereafter if Leigh disease were the degenerative pathology. If she did then Great Ormond would have specified that at the time because her neurological health would have been assessed to determine her then condition and the basal ganglia damage would have been detected then. In which case the LD diagnosis is implicit to a separate trauma or insult than the degenerative inherited neurometabolic disorder that has shared commonality of presentations to a brain trauma from or near to birth.
I am not a medical doctor but it may be in your interest to focus on neurological and pathological domains in order to gain a better sense of what the distinction is between psychiatric and clinical neurology in LD spheres . I know that is a burden to say it, but the LD Nurse and especially the Social Worker will not be able to approach those distinctions.
The LD Nurse and the Social Worker are the ones who should initiate a dedicated Continuing Health Care funding or a s75 NHS Act (better care funding) and Local Authority shared agreement where your daughter's health and care needs can be met. If you were able to have your daughter back home the same concern they have which they are not qualified to sustain clinically would become transient because your daughter's GP would have to become directly involved in order to sustain the psychiatric treatement which is where the behavioural inference lies.
I can understand your concern at the time lag between admission and a meeting to discharge - but unless that discharge event is signalled then the Social Worker may just play fancy with ideas and leave all the choices to yourself.
Of course their supporting concern is understandable - but it may also be as much a reflection of a concern for yourself as it is a concern for your daughter's health and wellbeing.
Firstly I am so sorry you are going through all this, it is very emotional and hard. All you're trying to do is in her best interests. Before anything is decided you really need a full check on the medications she is being prescribed . You need a team who are more independent and that can look at the whole patient.
yeah I’ve asked for a second opinion from a learning disability physiatrist I know people can become institutionalised very quickly when being in hospital and we do want her out but not the same way she went in if that is at all possible I don’t think that her meds being out in her ensure juice is a 100% effective especially the antipsychotic which hopefully would help enough for her to get back to some form of reality
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