Treatment against my will?

[Mumble]

I really need some urgent help with this one; I know it's not strictly ASD related but the difficulties I'm having making sense of it may be ASD related and the consultant's refusal to take my ASD into account in her diagnosis is relevant.

 

I found out yesterday from my GP that my neurologist has referred me without informing me to a mental hospital for treatment. This came completely out of the blue and I couldn't really take in everything the GP was saying.

 

I have two options:

 

1. I accept this referral and go in

 

2. I refuse to accept it. A refusal to accept the need for it is a diagnostic criteria for mental disorder and I will taken in against my will.

 

Outcome is the same either way unless I run, and that is the only thing I can think to do right now. I'm terrified. My brother was locked up there as they didn't understand his autism and it ruined him turning him from someone I had some communication with into someone who no longer recognises me.

 

The neurologist has made the referral on the basis that she believes I have made up various medical symptoms, particularly my seizures, this year. I haven't and I'm terrified now both that my actual medical needs aren't being looked after and that I'm being treated in this way and can't get anyone to listen to me or support. The neurologist won't listen to my ASD as being the reason for particular behaviours, she's come up with a ridiculous and completely fictitious (and deeply distressing) assertion about my childhood (I won't go into details on a family forum, suffice to say her accusations involve inappropriate actions by older male family members - there is NO truth in these what so ever) and that I'm in deep trauma hence making up this symptoms. This is not true, but the mere act of saying it's not true, i.e. denial, is a diagnostic criteria for mental disorder. I'm completely trapped. There is no way out. Please help me, I have no one to turn to and I'm utterly terrified.

 

[lorryw]

Oh my god,

I am so shocked to read this. I cant offer you any advice (but I will have a look through my community care law book).

Try and stay strong, I am sure what they are suggesting is full of holes and an infringement of your human rights.

Loraine

[KezT]

It is a really difficult situation - as you say, if you refuse, they will see that as a sign that you need to be sectioned, which will be much more difficult to get out of in the end, so I would say, on balance, that you will probably have to go along volunatrily.

 

Just keep as calm as possible, repeat what you know to be true, and go along with their tests and stuff. Hopefully, they will be satisfied with their results at the end of it, and you can try again with getting the medical issues sorted, with the added bonus that they can not try to say it's a MH issue, as that will have been determined already.

 

MH is still very much in its infancy imo, but we are slowly understanding more. It is hardly unknown for one doctor to believe everything is down to X when in fact it turns out to be nothing to do with X, but is all about Y, Z and Ω! In most cases, when really looked into, sanity will prove itself. You have a DX of ASD, and the pysch's will have to take that into account in their reports. Also, there will (probably) numerous people involved, so a single person's opinion will not be enough to sway the outcome.

 

I don't think it is something you can run from - it will just reappear and be even more difficult to deal with next time.

 

So when the referral comes through, just take a deep breath, think positive, and go along with it. <'>

[cmuir]

Hi

 

Is there anyone you can turn to to help act as a mediator (friend, family member, local support group, NAS)? It angers me that some Psychs can put two and two together and come up with 100! Is it possible you could write to this person stating how you feel ie not being listened to, feeling deeply distressed about fictitious 'event's occuring, being referred to a mental hospital, etc? Could you ask for a second opinion (it's amazing how different professionals can be)? It might be worth writing to the consultant asking why the referral has been made, what will happen at the appointment and what the outcomes might be. I understand why you might consider not accepting the appointment. However, once you know why the referral has been made and what'll happen, it might decrease your anxiety levels. If you ascertain this info, then you'll be in a better position to make a judgement.

 

You might have an ASD and find it difficult to articulate face to face how you feel, but that certainly doesn't make you stupid or mean that you shouldn't be listened to. I'm NT, but some years ago used to find it difficult to deal with difficult face-to-face situations. I found that I was able to be much more articulate in writing and I also had more time to consider things and respond appropriately. I'm shocked and feel so sorry that this is happening. I really hope you that things get easier for you soon.

 

Caroline.

[Mumble]

Thank you both for your replies.

 

Just keep as calm as possible, repeat what you know to be true, and go along with their tests and stuff. Hopefully, they will be satisfied with their results at the end of it, and you can try again with getting the medical issues sorted, with the added bonus that they can not try to say it's a MH issue, as that will have been determined already.

 

MH is still very much in its infancy imo, but we are slowly understanding more. It is hardly unknown for one doctor to believe everything is down to X when in fact it turns out to be nothing to do with X, but is all about Y, Z and Ω! In most cases, when really looked into, sanity will prove itself. You have a DX of ASD, and the pysch's will have to take that into account in their reports. Also, there will (probably) numerous people involved, so a single person's opinion will not be enough to sway the outcome.

This is part of the problem. Perhaps I should have explained. Earlier this year I was going through a very difficult time with my university and socially, I was being severely bullied, couldn't make myself heard and was really suffering as a result of not having my recognised support needs related to my ASD met. I could see no way out and did something very stupid - thankfully I saw sense and got help from my GP (who was fantastic and who I now, literally, owe my life to) and then hospital (I was in a week, this was serious).

 

After I was medically cleared I had a full mental health assessment from a team within the CMHT. They all agreed that I had no mental health issues, psychiatric issue, etc and that my difficulties were solely related to being left unsupported in managing problems arising as a result of my ASD. This was all put in writing and I was discharged from CMHT. My health team also held a case conference coming to the same conclusion and emphasising social support needs. The CBT therapy I currently have is actually very loosely CBT but more just a support outlet for me to have a friendly face to talk to (and email) about the issues that arise particularly with my ASD as I still do not have any formal support in place.

 

Additionally, I have a very well known expert in Autism (who diagnosed me) who agrees that my difficulties (and the action I took) were/are socially/ASD related, that support is imperative and, most importantly, that any mental health setting would not only be wrong, but potentially disastrous to me. I quite simply wouldn't cope. He has written various letters to this effect in support of me.

 

I thought, as I hadn't heard from my neurologist for a while, that things had died down after I had written to her for the second time explaining that her accusations were wrong and the stated events/prolonged treatment she maintains happened to me during my childhood hadn't happened. I included copies of the CMHT discharge and other letters. I was totally shocked then when my GP said "I thought you should know but I've had a phone call from your neurologist telling me she's made a referral..."

 

[Mumble]

Is there anyone you can turn to to help act as a mediator (friend, family member, local support group, NAS)? It angers me that some Psychs can put two and two together and come up with 100! Is it possible you could write to this person stating how you feel ie not being listened to, feeling deeply distressed about fictitious 'event's occuring, being referred to a mental hospital, etc? Could you ask for a second opinion (it's amazing how different professionals can be)? It might be worth writing to the consultant asking why the referral has been made, what will happen at the appointment and what the outcomes might be. I understand why you might consider not accepting the appointment. However, once you know why the referral has been made and what'll happen, it might decrease your anxiety levels. If you ascertain this info, then you'll be in a better position to make a judgement.

 

You might have an ASD and find it difficult to articulate face to face how you feel, but that certainly doesn't make you stupid or mean that you shouldn't be listened to. I'm NT, but some years ago used to find it difficult to deal with difficult face-to-face situations. I found that I was able to be much more articulate in writing and I also had more time to consider things and respond appropriately. I'm shocked and feel so sorry that this is happening. I really hope you that things get easier for you soon.

Thanks - unfortunately there isn't anyone I can take - I haven't told my sister because to be honest the 'family history' the neurologist has made up is so deeply distressing I don't want to bring my sister into it and I don't have any other family who would be able to go. I don't know what the NAS can do but I might contact them, thanks, I hadn't thought of that. Do they have people who can support/represent on an individual basis?

 

I really want to ask for a second opinion, not least because I'm still very concerned about my physical symptoms. I don't know how to do this though and I really value the good relationship I've built up with my GP and don't want to risk destroying this.

 

I'm so upset because, despite not being given the support I need, with help from my therapist I've been working on making some social contacts with other students, pushing my comfort zone etc. It's not been easy but I've been really proud of the little achievements I've made and it just seems now like that all counts for nothing.

 

[JsMum]

 

 

You need legal support and maybe a second opinion, also as you have an ASD the mental health assessment should be done in a specilaist hospital that also has knowledge and specialism in ASD, I know Priory group have proffesionals in mental health and autism, but you would need your pct to fund a placement, I would look into getting more support from NAS as Im sure they will know more, also saneline. and Mind.

 

I really do feel for you right now and understand why you are feeling so terrified.

 

Hope you get some specialist support.

 

http://www.sane.org.uk/

http://www.communitylegaladvice.org.uk/gat...th.jsp?rid=5616

http://www.mind.org.uk/help/information_and_advice

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=158&a=16644

 

JsMUMXXXXXXX

 

[KezT]

Do you have a support worker/commuity outreach professional who could come along with you?

 

I would also recommend getting some proper legal advice about this - especially as you say you have evidence to back up that it is totally the wrong treatment for you!

 

You could start with CAB - they are free, and will, at the very least, be able to tell you your basic rights and refer you on to who else might be able to help. Most CAB's do a drop in service - just turn up and wait to be seen by an advisor, although with some you have to phone to make an appointment. Your uni welfare people might be able to help too - I can't remember, are you still at uni or have you left now?

[Tally]

I don't know why they make up stuff like this!

 

If it comes to it, it is always better to go as a voluntary patient than get sectioned.

 

Remember that this referral has been made by a neurologist, not a psychiatrist. The CMHT, your CBT therapist and the person who diagnosed you with AS have all declared you sane, it is likely you will get the same outcome from the hospital.

 

Since you have a good relationship with your GP, I suggest you meet with him/her (book a double appointment) and try to find out as much as you can. It does sound as though your GP is on your side over this referral.

 

The CAB may not be the best source of legal advice over this particular issue, though they may be able to refer you on to someone who is. Sane and Mind are mental health charities and may be better sources of advice.

 

Your posts here explain the situation very well and might be useful for you to refer back to if you feel up to making a complaint at a later date. Try to keep records of everything else that happens.

 

I do think you should tell your sister what is going on. She is only going to be upset for you, and not distressed by the allegations themselves, since she knows they are untrue. She could be a useful ally for you, and might be able to help you get the advice you need.

[Mumble]

Thanks - the big problem I'm having is not having anyone to advocate for me and the neurologist is loving that - she's never been very easy and her letters have always been inaccurate to the point of me questioning whether I was at the same consultation. She's talked about me misinterpreting her which I would have been sucked into if it wasn't for the fact that the other two hospital consultants I see (different conditions, one regularly, one intermittently) both understand me, their letters reflect what was discussed/agreed, I've never had any misunderstanding with them and they have never suggested a mental health basis to my conditions. (The neurologist has suggested that my severe asthma - I've had a number of life-threatening attacks, been hospitalised on numerous occasions, spent more time on a resus trolley than I care to think about - is also made up and in my head yet my thoracic consultant team see it as having an entirely medical basis and (literally ) keep me alive through medical intervention).

 

I'm really caught up in this one. Because I'm at uni, my support worker should come from within there (and all the funding is in place and hours agreed) but they haven't fulfilled their obligations to find me someone. That lack of support has directly led to some of the issues I've faced around not having support which is how mental health/CMHT became involved initially. In the CMHT letter they emphasised the need for my support but were under the assumption this would happen (as they and I had been told it would following those events). That support hasn't happened and so I don't have anyone to help me access support (be it legal or otherwise) I need. It's almost as if you need support to get support - does that make sense?

 

Since you have a good relationship with your GP, I suggest you meet with him/her (book a double appointment) and try to find out as much as you can. It does sound as though your GP is on your side over this referral.

Yes, I intend to do this. I didn't leave things very well with my GP yesterday as I was in total shock. She told me she was only the messenger... I've got a double appointment next week and I'm seeing my therapist prior to the GP so I ca sort out how to say what I want to say.

 

I'm going to write down everything in order and keep it with the supporting evidence because it just can't be disagreed with. I'm really struggling to understand why the neurologist has done this; I thought the NHS was overstretched!

 

I do think you should tell your sister what is going on. She is only going to be upset for you, and not distressed by the allegations themselves, since she knows they are untrue. She could be a useful ally for you, and might be able to help you get the advice you need.

This is really difficult and I don't know what to do for the best. What I'm terrified of is somehow that if I involve her or if she comes to see the consultant with me that they bring her in to the accusations and she then has to defend herself when she's managed to stay pretty free of all the health people herself. I couldn't live with myself if she got dragged into this and it impacted on her life and studies.

 

 

Does anyone know how far back social services records are kept? Social services were involved with our family from before I was born because my older brother's severe autism made family life 'interesting' and my Mum struggled to cope with his behaviour, then later when my Mum had cancer I was my sister's main carer (there's a big age gap between us). There were regular meetings so would there be records I could tap into to prove the allegations were unfounded?

 

[Cat]

Does anyone know how far back social services records are kept? Social services were involved with our family from before I was born because my older brother's severe autism made family life 'interesting' and my Mum struggled to cope with his behaviour, then later when my Mum had cancer I was my sister's main carer (there's a big age gap between us). There were regular meetings so would there be records I could tap into to prove the allegations were unfounded?

 

Hi Mumble I checked this out with someone who knows about these things and have been told that SS should indeed have kept a record of their involvement with your family. It is worth trying to find out.

 

I was also given a link to these people http://www.stah.org/autistic-spectrum-diso...m-disorder.html This is a private service but someone might be willing to speak to you. Again it is worth a try.

 

<'> <'> <'>

 

Cat

Edited October 16, 2009 by Cat

[Mumble]

Hi Mumble I checked this out with someone who knows about these things and have been told that SS should indeed have kept a record of their involvement with your family. It is worth trying to find out.

 

Thanks for this info Cat. Do you know who I would approach? Would I go through my GP, therapist, local SS or contact the SS teams involved (the trouble being we moved around a few times when I was a child so there would be more than one - would notes all have been passed to the last one?)

 

Thanks for the link too - it says it's just for men (if I've read it right) but they may still be able to advise (if they can't help they may know someone that can) so Ive put it in my list of possible sources of help.

 

 

Thanks to everyone who's given me input here and through PMs - I really appreciate it and I'm already feeling more positive about fighting this now. They're going to have trouble tying this penguin down - penguin's are slippery you know!! :lol:

 

[bid]

Oh Mumble, I'm struggling to respond <'>

 

I can only echo the advice to see your GP with a clear, concise record of the input from the other professionals involved, and to consider seeking specialist legal advice.

 

I wish I knew more and could offer some real advice

 

Hang in there and remember you're not alone as we're all supporting you!

 

Bidx

[Kathryn]

Already pm'd you, but saying it here as well, hang in there! <'>

 

K x

[dana]

Oh, Mumble, I wish I could give you some more advice and help! Instead, I am sanding you these <'> >< <'>.

I am thinking of you and hope you will succede.

Wish you all the best! <'>

 

Danaxxx

[Sally44]

I don't understand how a neurologist could refer you to a mental hospital for treatment? Is she referring you for assessments or does she mention actual treatment?

Due to your poor relationship and her accusations have you been in contact with her alot recently either in person or via letters?

Use the contacts others have suggested (particularly NAS and MIND etc) to see if you can get an advocate or legal representation.

See your GP to discuss what is being suggested and to get a better understanding of what the neurologist is seeking. Ask if you can get a second opinion from a professional that has experience of ASDs, or whether other professionals already involved can confirm your understanding of events. What aspect of your current behaviour do they consider is a mental disorder.

Is your sister vulnerable in any way, or does she have a diagnosis? If not she maybe able to support you and confirm events.

Thinking of you, and keep us posted.

 

[Karen A]

Hi Mumble. <'> <'>

http://www.mind.org.uk/help/advice_lines

There is a link here for mind legal advice.

I think it would be worth Emailing them.

I think that if any attempt were to be made to section you under the mental health act professionals other than the neurologist woul have to agree.

I would be surprised if it could be done without the agreement of your GP/and or a Mental Health Specialist although I am not an expert.

http://www.mind.org.uk/help/rights_and_leg...ion_to_hospital

The information is on this link.

 

I thought that you had seen a psychiatrist before am I right ?

If so do contact them.A psychiatrist who has seen you previously should have a very good idea regarding whether they agree with the neurologist.

It does not sound good practice to me that the Neurologist has refered back to the GP rather than contacting the psychiatric team that have cared for you previously.

The other avenue that is certainly worth exploring is to contact the professional who carries out your CBT.

If the professional is a psychologist or a psychotherapist they should be very well qualified to give an accurate opinion regarding your mental health stste.

I speak from intensive personal experience.I have now had nearly 10 years of individual psychotherapy privately.My husband and myself have had nearly three years of psychotherapy with a CAMHS psychotherapist.

If you had a history of childhood trauma it would be extremely unusual for it not to have been picked up either during psychiatric assessments or during assessments for CBT.

It would shock me if no previous psychiatric professionals had picked up a history of childhood trauma but a neurologist had somehow picked it.

Another option is to contact PALS with a view to making an official complaint about the Neurologist.

It should also be an option to request a second opinion and/or request to change Neurologist.PALS should be able to support you in that.

It is certainly worth contacting the NAS too.I think it may be useful to have some specialist advice regarding the mental health act and ASD.It is a very specialist area but I am sure the NAS must have come across cases before.There should only be a case for admitting you under the mental health act if you have a treatable mental condition.

 

I do not know how much of a comfort it may be for you.If the Neorlogist were to attempt to demonstrate a case for admission to psychiatric hospital they would probably have to deal with a different NHS trust to the one they work for.As far as I am aware at any given time it is extremely difficult to obtain a psychiatric bed in London unless an individual is considered a serious imediate danger to themself or others.

Edited October 16, 2009 by Karen A

[Karen A]

Hi again I just wanted to add something else that might be helpful if I can explain it.

When and how did you obtain your ASD diagnosis ?

It is not usually possible for a specialist to diagnose ASD where there is a history of childhood trauma.

When Ben was assessed for ASD the debate amongst specialists centred on whether he had AS or whether he had some sort of attachment disorder.The attachment disorder related to the fact that Ben may have had difficult experiences during the first two years of his life because I was mentally unwell at that time.

The CAMHS psychotherapists thought that Ben had some sort of attachment disorder whilst the SALT thought he had AS.However Ben could not have both attachment disorder and ASD it is one combination that is just not allowed when a diagnosis is being made.An individual can have either ASD or behaviours which are the result of childhood trauma but not both.

In a similar way I can appear at times as though I might have AS and I have wondered.However I could never be assessed for a diagnosis.As you know I have a history of extreme childhood trauma.The effect of that trauma makes it currently impossible for any specialist to establish whether I might have AS.

 

Diagnostic Assessments for ASD should have ruled out childhood trauma as the cause of your patterns of behaviour.So you may not need to investigate SS reports.

 

[puffin]

Is there any way that you could go back to the sympathetic doctor at Camhs who assessed you? This would show that you are cooperating - by seeing a mental health professional - but chosing to use a person who you know understands your situation and background

[JsMum]

 

 

There defo has to be TWO signitures to sectioning a person on the MHA and Im positive its TWO psychaitrists.

 

Hope youve been oright today.

 

JsMUMXXXX

 

[Kathryn]

Hi all,

 

Mumble has asked me to let you know that she's not going to be around for a few days. She's in hospital at the moment being treated for her asthma and says that she is being well looked after.

 

She's got no internet access and didn't want people to worry that she'd been locked up!

 

K x

[JsMum]

 

 

 

Thanks kathryn, get well soon Mumble.xxxxx

JsMumxxxx

 

[KezT]

Hi all,

 

Mumble has asked me to let you know that she's not going to be around for a few days. She's in hospital at the moment being treated for her asthma and says that she is being well looked after.

 

She's got no internet access and didn't want people to worry that she'd been locked up!

 

K x

 

Thanks for letting us know. Hope she gets well soon.

[Jannih]

Get well soon, Mumble. I should imagine that all this stress is not helping you at all.

 

It might be a good idea to read and be informed about the recent Mental Capacity Act. Perhaps someone can print it off for you - Should make good bed time reading !

 

http://www.patient.co.uk/doctor/Mental-Capacity-Act.htm

 

http://www.patient.co.uk/showdoc/40000710/

 

 

[Mum of 3]

<'> >< <'>

Sending lots of these mumble.

[Mumble]

Hi all,

 

Mumble has asked me to let you know that she's not going to be around for a few days. She's in hospital at the moment being treated for her asthma and says that she is being well looked after.

 

She's got no internet access and didn't want people to worry that she'd been locked up!

 

K x

Thanks for this Kathryn, and thanks everyone for your good wishes. I've escaped (I had to be very nice to the yummy docs! :wub:) but am feeling absolutely exhausted. I've been told to do pretty much nothing other than sleep and eat and I certainly don't have any fight in me for stupid neuro woman and her pathetic agenda.

 

My GP's seeing me this week and I'm going to see whether neuro woman and psych referral can be put off to give me more time because I don't need that stress right now.

 

What aspect of your current behaviour do they consider is a mental disorder.

She (neuro consultant - important to note that no-one else believes this) thinks I'm making up my medical symptoms - both neurological and other. Considering I've just rather too narrowly avoided an ICU admission and it would be impossible to somehow fake the arterial blood gas reading they take which showed I was severely hypoxic all the evidence is on my side - I just have to find a way of keeping this in mind.

 

I thought that you had seen a psychiatrist before am I right ?

If so do contact them.

That's a really good idea, thanks. I'm seeing my counsellor this week and so will ask her about contacting the people who've seen me before and said I'm fine

 

An individual can have either ASD or behaviours which are the result of childhood trauma but not both.

Absolutely true. This was looked at very carefully in my case because my Mum wasn't the most involved Mum, but it's strongly thought (though she would never accept this) that she has ASD or at least quite strong ASD type behaviours. There's also issues with my father and him not wanting children (very careless then that three popped out... ) and he was also very ASDish. However, with my history carefully taken into account (and I was dx'ed by someone who def. knows what he's talking about here) I was dx'ed ASD and my lifelong issues are considered due to that dx. Looking back through generations, this is thought to be strongly genetic in my family from both sides. The clinical psych who made my dx has already confirmed that my behaviours are ASD not due to upbringing and he'd be quite happy to support me further, I'm sure.

 

I just wanted to thank everyone; when I got this news, I really closed in and got really frightened, but with all your help I've been able to think far more clearly and I really can't see the neuro having a case. My hospital admission, as horrible as it is, has just given further weight to the case that I'm not making this up. I'm going to put everything clearly together so I have all the details clear in my head and the people I can go to for help, see what my counsellor and GP say and take it from there, but with the focus at the moment on my physical health.

 

[Mumble]

She's got no internet access and didn't want people to worry that she'd been locked up!

BTW, does that count as me developing Theory of Mind?

[madme]

What the neuro is suggesting can sometimes be called somataform disorder if there is no physical cause of the symptoms. However this is usually unconscious. I have come across it and they have to exclude any physical cause first and then they would usually refer on to a psch. I cant see how its a neuros job to think up causes like this- sounds rather like that doctor in the munchausens cases- The solicitor who dealt with those cases is really good at this area and may be worth getting some advice if they dont back off. Hope you get this sorted soon.

[Mumble]

What the neuro is suggesting can sometimes be called somataform disorder if there is no physical cause of the symptoms. However this is usually unconscious.

The neuro has suggested that term, but has also talked about it being conscious which (as well as not being true) just doesn't fit such a dx. Also, I do have medical evidence that my symptoms are physical/medical in nature from multiple doctors/consultants (in fact everyone apart from the neuro... )

 

Either way, as you say, if this was/is the case, it's not her place to be making such a dx.

 

[Kathryn]

BTW, does that count as me developing Theory of Mind?

 

Yes. Don't tell the neuro!

 

Good to see you back

 

K x

 

 

[Sally44]

Look after yourself.

[call me jaded]

Just catching up. How disempowering for you.

 

If you have a social worker you can ask them to find an advocate for you - could help with the lack of action on college support as much as anything.

 

Here's the NAS page on advocacy. Use the links at the bottom to find yourself someone near where you live.

 

[Mumble]

I saw my GP today and took my concerns in writing. I think she mainly understood them. Anyway, as 'luck' (doesn't feel lucky ) would have it, GP decided this was far too stressful with that level of stress potentially very dangerous given my current health. She's crossed all the neuro, psych and uni stuff off what I need to worry about and has said I can tell them she said so and she'll deal with interactions, paperwork etc. My focus has to be getting through day to day with grumpy lungs (very technical term). It doesn't solve the problem but it gives me time and I do feel that she's supporting me which is a good basis to address this from when the issue re-arises.

 

[Enid]

Mumble, that sounds more positive. keep strong. <'> Enid

[Kathryn]

What a great GP you have - now you just concentrate on getting better, OK? <'>

 

K x

[Mum of 3]

What a relief for you, Mumble... <'> <'> Get well soon. X

[Nic m]

Mumble

 

I am not on here much and just noticed this thread.........hang in there.

 

I am thinking of you xx

N x