refusing medication - what are your rights?

longman said:

I have tried to find some helpful information on my bookshelf, but the only thing I can find is Morton-Cooper, Alison (1988) Health Care and the Autistic Spectrum A Guide for Health Professionals, Parents and Carers, Jessica Kingsley Publishers. This is dated and also rather superficial. Morton-Cooper is an educator rather than a health professional.

However p80 it says "Take extreme care over the administration of medicines. Adults and children with autism may not tolerate medicines well, and alternative forms of administration may be needed. The ward pharmacist may need to liaise closely with a nominated relative, nursing staff and the prescribing doctors so that sensory senstivities are taken into account".

P94 warns that "if catherisation is required because of urinary problems or surgery special care will be needed to see that this is carried out as gently as possible or it is likely to cause extreme distress".

The key point is that people on the spectrum need specialist knowledge, and it may be that the health professionals prescribing for alleged schizophrenia may not actually know enough about treatment of patients with autism. It might be appropriate for your parents to request that a qualified autism experienced professional be involved.

once again thank you for your assistance, however......

he has happily lived to the grand age of 50 without the need for any medication (never posing any danger to himself/anyone else)

he has also managed to keep himself clean and presentable as well ( needlesharp ironing!!!)

nothing has changed behaviouraly (within reason anyway)

So with respect we would rather he came off medication all together and we would certainly be very unhappy with surgery/permanant catherteristion - why disable him?

I do however take your earlier point - there may well be a valid reason for medication in the consultants opinion BUT...

If I had to bet - it wouldnt be on the consultant!!!!!!!!!!!!!!!!

...and I completely 100% agree with the need for specialist help - the trouble is - the cost!

is that book available online or to purchase and is it considered the definative guide???

Scorpion0x17 said:

Nothing to add to the excellent advice already given by longman, but just wanted say that I wish you and your brother 'all the best'.

thank you - my brother really enjoyed "lonliness" - you have summed him up to a "T"

...you must publish that before someone steals it!!!

and finally @ "Temple" I do appreciate your input greatly - thanks

Nothing to add to the excellent advice already given by longman, but just wanted say that I wish you and your brother 'all the best'.

longman said:

I have tried to find some helpful information on my bookshelf, but the only thing I can find is Morton-Cooper, Alison (1988) Health Care and the Autistic Spectrum A Guide for Health Professionals, Parents and Carers, Jessica Kingsley Publishers. This is dated and also rather superficial. Morton-Cooper is an educator rather than a health professional.

However p80 it says "Take extreme care over the administration of medicines. Adults and children with autism may not tolerate medicines well, and alternative forms of administration may be needed. The ward pharmacist may need to liaise closely with a nominated relative, nursing staff and the prescribing doctors so that sensory senstivities are taken into account".

P94 warns that "if catherisation is required because of urinary problems or surgery special care will be needed to see that this is carried out as gently as possible or it is likely to cause extreme distress".

The key point is that people on the spectrum need specialist knowledge, and it may be that the health professionals prescribing for alleged schizophrenia may not actually know enough about treatment of patients with autism. It might be appropriate for your parents to request that a qualified autism experienced professional be involved.

i think that is really good help there thank you i think that might help me is well thank you i like the way you help people and i think that is real kind of you your a kind person.

I have tried to find some helpful information on my bookshelf, but the only thing I can find is Morton-Cooper, Alison (1988) Health Care and the Autistic Spectrum A Guide for Health Professionals, Parents and Carers, Jessica Kingsley Publishers. This is dated and also rather superficial. Morton-Cooper is an educator rather than a health professional.

However p80 it says "Take extreme care over the administration of medicines. Adults and children with autism may not tolerate medicines well, and alternative forms of administration may be needed. The ward pharmacist may need to liaise closely with a nominated relative, nursing staff and the prescribing doctors so that sensory senstivities are taken into account".

P94 warns that "if catherisation is required because of urinary problems or surgery special care will be needed to see that this is carried out as gently as possible or it is likely to cause extreme distress".

The key point is that people on the spectrum need specialist knowledge, and it may be that the health professionals prescribing for alleged schizophrenia may not actually know enough about treatment of patients with autism. It might be appropriate for your parents to request that a qualified autism experienced professional be involved.

desperatebrother said:

Hi experts!!!

 

Just joined today,

As usual I need your input please

My brother (50years old) has been living independantly for getting on for 10 years. He is a very gentle person, is definately not aggresive and is not a danger to any living thing. As an aspergers sufferer he is socially a disaster and it can be difficult to understand what makes him tick sometimes. He has (until recently) never been on any medication, and as his family we have never felt he needed any

some background....

He was (eventually) diagnosed with aspergers in his early 20`s. My parents kept an eye on him until they moved some distance from him (very long story), and at this point social services took over, because he wanted to stay in the area that he knew. To my shame I too live some distance away and contact between myself and my brother has always been eratic. However up until very recently he was perfectly happy with the arrangement, and regular visits occurred with all of us.

in the last 18months he has been persuaded to go into Hospital twice (we still do not know why), indeed he is currently in hospital. His consultant has both times, imediately placed him on a cocktail of drugs.

Unfortunately these drugs have had a terrible effect on him...

He ends with urine retention and eventually a catheter

He hovers between constipation and bowel incontinancy

He aternates between a zombie state and bad temper (though never agression)

His consultant has admitted that he is "sensitive" to medication and at the last meeting attended by my parents agreed to take him off all medication. His health improved enormously within 3 days!!!!

My parents are currently away and I am ringing him every day to see how he is.

yesterday he (eventually) told me that the consultant very kindly put him back on the medication - "just to see how you get on" and coincidentally the day he knew my parents had gone away

My brother informs me that he does not want to take these pills and has been flushing them down the loo. He further tells me that he has told his consultant that he does not want tablets.

So my question is...

Should he "own up" to not taking tablets and further should he again inform consultant that he in effect "refuses " medication?

...if he does this what can/will they do??

Sorry for the rambling post if you need any more info please ask

 

 

your lucky your brother can live on his own my brother tried living on his own a few times only to get kicked out how did he get the place he staying at right now maybe the same people can help you get him moved near you your very brave person going through this it seems the older you are the harder it becomes to get help and he is lucky that he has a sister that is willing to help him my sister wants nothing to do with my brother.

Desperatebrother, it might be worth searching the National Autistic Society website for help sources (services in your area, etc.) There may be a branch of NAS in your brother's area. Even if your brother is an adult there may be a parents' group for children with autism who can put you in touch with the right people. Or it may be worth contacting the team that diagnosed him with autism/aspergers.

What you need is the intervention of people who know about medications for people on the autistic spectrum, who may be able to intervene in what medication is being prescribed.

Also you need to find out whether the people prescribing him for schizophrenia or whatever they think is wrong are fully clued up on autism and medication for people with autism.

They do sound a bit out of their depth and may be acting unprofessionally if they aren't seeking appropriate guidance on medication for people on the spectrum. If you can get hold of Tony Attwood's The Complete Guide to Asperger's Syndrome that may help you with issues including his Chapter 14 on Psychotherapy

Are the moderators able to assist on this? I'm way out of my depth but trying to put ideas forward in the hope it leads you to better authorities

desperatebrother said:

[quote][/quote]

Patient confidentiality is one thing, but as family you have evidently reason to be concerned. What on earth is he being treated for that medication with such severe reactions is merited?

You need to consult Citzen's Advice to find out if there are any legal measures that can be taken on his behalf.

If he has not been sectioned under what terms are these medical individuals acting? Even with his consent. The side effects seem very damaging. There must be something they are treating that they think justifies such extreme measures.

Doesn't sound like autism. Are they treating him for Schizophrenia or a bipolar disorder? Are they taking account of the effects of some medications on people with autism?

The moderators need to come in on this I think.

Well YES they do seem to be treating him as schizophrenic (much to his disgust)

I am not an expert (yet) but aspergers/autism symptoms suit my brothers personality and behaviour down to a "T" and the family has always been comfortable with that diagnosis

The best way of describing what has happened to him is to tell you the abridged story.

His bed needed changing due to damaged springs. This meant he could not sleep in it. His answer was to sleep on his sofa (even more uncomfortable) so he was hardly getting any sleep. He needs his sleep more than most folk.

Lack of sleep means that he misplaces things - in this story his coach tickets for a planned trip to my parents. He got confused and rang his helpline number. trouble was it was approaching a bank holiday weekend and it was a mental health nurse who answered. This nurse suggested he go in to hospital which he did (on the bus!!!!)

Arrived in hospital - placed on drugs - down hill from there

He has been in since easter - and yes I think they nearly killed him

Same thing happened at christmas - they discharged him with a catheter in - poor chap is totally incapable of "managing" a catheter - eventually some urologist "hit the roof" removed catheter and insisted medication was stopped

As to why they put him on drugs - who knows.....

maybe it is the easy option - part of his condition results in behaviour that can be difficult to fully understand (especially if you are in a hurry, or not an expert)

...maybe they felt he was schizophrenic

However we as his family do not

He is unique, caring, extremely gentle BUT frustrating - tell him not to do something and...... - you know the rest

Drug names I cannot remember but all the top three nasty anti phsyc

I can get the names if it helps, but the one they keep going back to does nothing to help him mentally (that we can see - and since xmas we have being seeing him weekly) But they do screw his general health up

Social services profess to have no interest in what they call "health issues" insisting on leaving that area to the medical profession

Unfortunately that at the moment is a consultant who...

Has admited that my bro doesnt suit any of the meds so far tried - yet keeps re- prescribing when the family`s back is turned

ignores nursing staff and fellow professional advice

ignores my brother and according to him hasnt even tried to understand him

I should point out that up until very recently my parents have (at their insistence) been the main point of contact. They therefore know more details than me. However I am determined to be there for him and cant wait for him to be closer. At the moment he is 200miles away from my parents and over 100 from me. I/we begin to suspect that "loneliness" is a significant factor. All of his current carer/social workers seem increasinglt too busy to carry on the care and attention he used to recieve in the early days of living independantly. In the meanwhile my mid 70`s parents are "clocking up" the miles attending endless meetings where the endless circle continues to pointlessly revolve

I have to say guys this has been stressing me out badly and then I found this site, thank you all I feel a little light is showing at the end of the tunnel

my mum and dad is going though the same thing with my brother is so very stressful for them they are at their ends wits it's very unlucky for them to have two kids who are autistic my dad likes to be around me but hates being around my brother he swears and shuts at them your lucky your bother is a nice person my brother doesn't act very nice.

longman said:

Patient confidentiality is one thing, but as family you have evidently reason to be concerned. What on earth is he being treated for that medication with such severe reactions is merited?

You need to consult Citzen's Advice to find out if there are any legal measures that can be taken on his behalf.

If he has not been sectioned under what terms are these medical individuals acting? Even with his consent. The side effects seem very damaging. There must be something they are treating that they think justifies such extreme measures.

Doesn't sound like autism. Are they treating him for Schizophrenia or a bipolar disorder? Are they taking account of the effects of some medications on people with autism?

The moderators need to come in on this I think.

Well YES they do seem to be treating him as schizophrenic (much to his disgust)

I am not an expert (yet) but aspergers/autism symptoms suit my brothers personality and behaviour down to a "T" and the family has always been comfortable with that diagnosis

The best way of describing what has happened to him is to tell you the abridged story.

His bed needed changing due to damaged springs. This meant he could not sleep in it. His answer was to sleep on his sofa (even more uncomfortable) so he was hardly getting any sleep. He needs his sleep more than most folk.

Lack of sleep means that he misplaces things - in this story his coach tickets for a planned trip to my parents. He got confused and rang his helpline number. trouble was it was approaching a bank holiday weekend and it was a mental health nurse who answered. This nurse suggested he go in to hospital which he did (on the bus!!!!)

Arrived in hospital - placed on drugs - down hill from there

He has been in since easter - and yes I think they nearly killed him

Same thing happened at christmas - they discharged him with a catheter in - poor chap is totally incapable of "managing" a catheter - eventually some urologist "hit the roof" removed catheter and insisted medication was stopped

As to why they put him on drugs - who knows.....

maybe it is the easy option - part of his condition results in behaviour that can be difficult to fully understand (especially if you are in a hurry, or not an expert)

...maybe they felt he was schizophrenic

However we as his family do not

He is unique, caring, extremely gentle BUT frustrating - tell him not to do something and...... - you know the rest

Drug names I cannot remember but all the top three nasty anti phsyc

I can get the names if it helps, but the one they keep going back to does nothing to help him mentally (that we can see - and since xmas we have being seeing him weekly) But they do screw his general health up

Social services profess to have no interest in what they call "health issues" insisting on leaving that area to the medical profession

Unfortunately that at the moment is a consultant who...

Has admited that my bro doesnt suit any of the meds so far tried - yet keeps re- prescribing when the family`s back is turned

ignores nursing staff and fellow professional advice

ignores my brother and according to him hasnt even tried to understand him

I should point out that up until very recently my parents have (at their insistence) been the main point of contact. They therefore know more details than me. However I am determined to be there for him and cant wait for him to be closer. At the moment he is 200miles away from my parents and over 100 from me. I/we begin to suspect that "loneliness" is a significant factor. All of his current carer/social workers seem increasinglt too busy to carry on the care and attention he used to recieve in the early days of living independantly. In the meanwhile my mid 70`s parents are "clocking up" the miles attending endless meetings where the endless circle continues to pointlessly revolve

I have to say guys this has been stressing me out badly and then I found this site, thank you all I feel a little light is showing at the end of the tunnel

Patient confidentiality is one thing, but as family you have evidently reason to be concerned. What on earth is he being treated for that medication with such severe reactions is merited?

You need to consult Citzen's Advice to find out if there are any legal measures that can be taken on his behalf.

If he has not been sectioned under what terms are these medical individuals acting? Even with his consent. The side effects seem very damaging. There must be something they are treating that they think justifies such extreme measures.

Doesn't sound like autism. Are they treating him for Schizophrenia or a bipolar disorder? Are they taking account of the effects of some medications on people with autism?

The moderators need to come in on this I think.

Hi desperatebrother,

Just to confirm what '(not Dr) Temple Grandin' said - unless your brother is mentally ill, and a danger to himself or others, the doctors can not force him to take pills he doesn't want to take (and even in the case of him being mentally ill and a danger, they can only do so after sectioning him).

Now, having said that, doctors generally don't prescribe medication for no reason, so if I were you I would want to find out what the pills are, and what condition they're meant to be treating - you will almost certainly have to try to ascertain this from your brother though, as the doctors, legally, can-not give you information about him, his condition, or his treatment without his say-so (under most circumstances).

desperatebrother said:

Thank you Temple Grandin

I have just spoken to him - someone else has told him that too!!!

....He has been writing in his notes again! - he is now requesting a new consultant!

...I was really worried that the only way I would get to see him would be in hospital - hopefully we can now work on him getting home again

a loving home is the best place for someone to be.

Thank you Temple Grandin

I have just spoken to him - someone else has told him that too!!!

....He has been writing in his notes again! - he is now requesting a new consultant!

...I was really worried that the only way I would get to see him would be in hospital - hopefully we can now work on him getting home again

desperatebrother said:

[quote][/quote]

[quote][/quote]

Hi experts!!!

 

 

they can not make him take the tablets i think it is up to him if he wants to tell them if he has stopped taking the tablets i know this because they can't make me take tablets if i don't them they told me they can't make take tablets if i don't want them the same goes to your bother.

Thank you for your input so you are saying that there is no way that they can force him? I am not an expert in this area and was concerned that they may try to force him or even worse comit him!!!!

they can not force him to take the tablets i know this because it has happened to me and they said they can not force someone to take tablets if they are not commit and they will not commit him unless he is a harm to himself or other people nothing will happen to him if he tells them he has stopped taking his tablets.  

Temple said:

[quote][/quote]

Hi experts!!!

 

 

they can not make him take the tablets i think it is up to him if he wants to tell them if he has stopped taking the tablets i know this because they can't make me take tablets if i don't them they told me they can't make take tablets if i don't want them the same goes to your bother.

Thank you for your input so you are saying that there is no way that they can force him? I am not an expert in this area and was concerned that they may try to force him or even worse comit him!!!!

Jon said:

Does he have contact with a proffessional who has in depth knowledge of Aspergers Syndrome?

Or any support for his Aspergers? Maybe ringing the helpline would provide some answers:

http://www.autism.org.uk/our-services/advice-and-information-services/autism-helpline/how-to-contact-us.aspx

Hi Jon,

Well a difficult one to answer....

social services can be good (occaisionally) but admit to not being experts.

the consultant is (using my brothers words) "cruel, heartless and incompetant" - he has apparently written that in his own notes!

My father has contacted the autistic society but it seems to be a frustrating slow process.

My wife and I are in the process of moving house and it is our wish (and my brothers) to move him closer to us once we have moved (it will then be adifferent social service dep)

Thank you for your reply

 

desperatebrother said:

Hi experts!!!

 

Just joined today,

As usual I need your input please

My brother (50years old) has been living independantly for getting on for 10 years. He is a very gentle person, is definately not aggresive and is not a danger to any living thing. As an aspergers sufferer he is socially a disaster and it can be difficult to understand what makes him tick sometimes. He has (until recently) never been on any medication, and as his family we have never felt he needed any

some background....

He was (eventually) diagnosed with aspergers in his early 20`s. My parents kept an eye on him until they moved some distance from him (very long story), and at this point social services took over, because he wanted to stay in the area that he knew. To my shame I too live some distance away and contact between myself and my brother has always been eratic. However up until very recently he was perfectly happy with the arrangement, and regular visits occurred with all of us.

in the last 18months he has been persuaded to go into Hospital twice (we still do not know why), indeed he is currently in hospital. His consultant has both times, imediately placed him on a cocktail of drugs.

Unfortunately these drugs have had a terrible effect on him...

He ends with urine retention and eventually a catheter

He hovers between constipation and bowel incontinancy

He aternates between a zombie state and bad temper (though never agression)

His consultant has admitted that he is "sensitive" to medication and at the last meeting attended by my parents agreed to take him off all medication. His health improved enormously within 3 days!!!!

My parents are currently away and I am ringing him every day to see how he is.

yesterday he (eventually) told me that the consultant very kindly put him back on the medication - "just to see how you get on" and coincidentally the day he knew my parents had gone away

My brother informs me that he does not want to take these pills and has been flushing them down the loo. He further tells me that he has told his consultant that he does not want tablets.

So my question is...

Should he "own up" to not taking tablets and further should he again inform consultant that he in effect "refuses " medication?

...if he does this what can/will they do??

Sorry for the rambling post if you need any more info please ask

 

 

they can not make him take the tablets i think it is up to him if he wants to tell them if he has stopped taking the tablets i know this because they can't make me take tablets if i don't them they told me they can't make take tablets if i don't want them the same goes to your bother.

Does he have contact with a proffessional who has in depth knowledge of Aspergers Syndrome?

Or any support for his Aspergers? Maybe ringing the helpline would provide some answers:

www.autism.org.uk/.../how-to-contact-us.aspx