Re: Re: applying to look after my son's welfare at...

[Guest guest]

lINDA COULD YOU WRITE A LETTER TO gp WITH THE DETAISLL YOU WANT PUT IN AND HAVE IN RED ON IT THAT THIS MUST BE FILED WITH YORU SONS MEDCIAL RECORDS FOR EVER MORE?

MX

,What a complete nightmare! It will be worse in the UK as doctors are less independent. I have a fight on my hands just getting my son's bad reactions to medication and a list of his symptoms written up on his GP notes. I thought that would be a good starting place as they should go everywhere with him. What difference is it to his GP to write something meaningful ...doctors generally just seem to want to throw their weight around and show whose boss just for the sake of it and that seems to be the attitude of most 'care professionals' (ha!) that I have come across. I am going to have to have a serious rethink about a lot of things if I can't get deputyship of his welfare. What is the point of it being something you can apply for if it is always refused by the judges!!Sounds to me like your daughter is a very lucky lady to have you fighting her corner.

,It should NOT be right!!! But......This is from USA; After going through the last 6mos trying to get my daughter[27y] into what seemed like a good residential setting, what you describe seems to be the attitude; anyone but parent knows what is best! - much like the school setting! I had 2 social workers saying the meds/supplements had to be trimmed to 12 items/day, that epsom salt baths would not be done, that topicals and anything not in pill form would not be given etc. They even said that any specialist out of our geographical area would not be acceptable. Thanks heavens for a doc[out of area]with lots of credentials who was fully supportive of comprehensive medical plan and who 'could not in good conscience remove any of the prescibed items.' My daughter learned long ago to give her MB12 injections and topicals because her father will not when she's w him. She also had to learn the 2 liquids she uses. All else was available in pill/capsule form. There is NO leeway for varying things - constipation, meltdowns, hyperventilation, seizures can not be addressed as happen. Currently, I am allowed to package supplements for daily use. I need to renew pharmaceuticals that the overseeing pharmacy can not get from their supplier if I want her to stay on the precise med i.e there is only one thyroid item she can take due to allergies so that comes from another pharmacy same w MB12 and a couple of others. Things went down to the ridiculous and minute level as we were trying to work this out w accusations flying left and right. I hired an attorney who was a great help - don't have the bill for that yet. Toss in a dad who bad mouths all the supps and most of the pharmas and refuses to pay for anything and it is most difficult. We have the verbage of 'client rights' here which applies to anyone older than 18y. If they[client] refuse, then that is a choice they can make irrespective of the consequences. Diet guidelines -gfcfsf and all allergy free were called into question - several items provoke delayed seizures! Thank heavens my daughter is tuned into most of this. She has 18y olds making life threatening decisions for her re food and can 'chose' herself to vary her program. No one seems to get the picture that our children are in a sheltered setting for life because they are unable to make good decisions for themselves due to the injuries and toxicities that have overwhelmed them. Make a detailed list of EVERYTHING you deem important for your child diet, exercise[what, how many times or hours/day/week], social[what, when, how many times/day/week/month], work[same], what to do in free time[family, friends, library, volunteering, programs liked[a horse program here etc which my daughter loves], developmental areas you want addressed, limitations[video, tv, etc] vacation - our system limits time to a certain number of days/year 'out of care' - based mainly on reimbursement for the supervising agency. Get it in writing!! and keep copies of everything at each stage. Keep important parties in the loop - one social worker totally misrepresented our doc's position and did it in a email to the 'team' w/o copy to the doc. Doc was not a happy camper! Don't delete even what seems like trivia. It does no good here to 'hope' it will get done or to not address it. I initially felt like I was walking on eggshells but then realized that my daughter needed the same advocacy [more really] that has been the pattern through her life. I'd rather be known[and you bet I am] as a difficult mom than have her suffer in the setting because 'they didn't know or couldn't do it' You get some of the same responses that the regular docs give when you bring up things like methylation, chelation, immune dysfunction, dysbiosis, etc because you're treading on hallowed ground[the social system vs the medical system]. The arm of the state is as strong and as wide as the traditional medical path and has no trouble using its might. In the long term they need to hear/honor all that our children need to live daily life as successfully as they can. Right now the older children are just trickeling into the system. Soon it will be an onslaught. Sorry this got so long, >> Surely this is not right!!!> > I am trying to look to the future and pre empt any problems in the > future regarding decisions about my son's welfare when he is deemed to > be an adult....ie having a say in where he lives, what medications he is > put on, etc etc.> > Mandi posted this very useful document :> > http://www.challengingbehaviour.org.uk/learning-disability-files/18_Getting-legal-Authority-to-make-decisions-about-money.pdf> > Which seems to be saying that deputyship (a say in his welfare) should > be applied for if he will be living at home. So I have been in touch > with my local MENCAP and been given the name of a solicitor to use but > also the name of an independant solicitor to talk to (Bequest -- a > panel of independent Lawyers who specialise in Private Client law, > including disabled persons trust, power of attorney. would be happy to > speak with you and pass on some information that will save you time and > steer you in the right direction. )> > I have just phoned the independent solicitor and she said don't bother > ....judges are not giving out deputyships as social services and doctors > etc are more likely to have the young adult's interest at heart than the > parents!!!> > Has anyone got anywhere with this or know where else I can get advise, I > have been left rather confused!> > She said all you can do is make sure things are in place for him ....what!?!> > I am already having problems with such simple straight forward stuff > like getting his doctors notes to reflect something that might be > helpful when we are not around. His current notes only say he has > 'verbal apraxia'!!!!!!! and does not mention his severe life threatening > reactions to some epilepsy medications!!!!! The GP has said he will put > 2 of the medications on the list but not the 3rd!? and will not list all > of his difficulties and can we go in to the surgery to discuss them?!?> > > Really fed up with everything.> > >

No virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.2171 / Virus Database: 2425/4988 - Release Date: 05/09/12

[Guest guest]

Thanks Mandi,

That is exactly what I have done but have just got a letter back

saying he will put some stuff on but not others!!! When we went to

the hospital a while ago the locum GP printed off like a summary of

for us to take to the hospital with him that is to help

whoever is dealing with him (presume they all have the same

software). It was a seal envelope but I opened it. This is the bit I

am trying to get updated with something that is actually meaningful

(like life threatening allergic reactions..currently blank and a

list of things that would be helpful to anyone treating him eg

phobias, understanding level etc).

What he has decided to include is all a bit random as our GP is just

a bully and showing us who is boss. I have come across this so many

times and it is  one of the reason that I am now panicking that I

will have even less say when he is 18+. Thank goodness he has put

the2 most serious ones on...the internal bleeding one was actually

denied strenuously at the time in the hospital and it was only

admitted that it was the medication verbally by his paediatrician 

when was 'out of the woods'. I did not think it had been

officially noted. It is important that they mention all reactions

(obviously) mostly so that it can be clearly seen that he has had a

bad reaction to all medications and so to be very wary in the

future.

We are booking a half hour appointment to 'discuss it'.

I have also requested his GP medical records as I was hoping to get

this done before he is 18, got a letter back saying he is over 16

and therefore I need his written permission....it has started

already! I have sent the form back anyway 'for their consideration',

so will see what they do.

I wonder how straight forward it would be to set up a very small

residential home myself? I know there is one in the local town that

looks after 3 adults....

x.

 

lINDA COULD YOU WRITE A LETTER TO gp WITH THE

DETAISLL YOU WANT PUT IN AND HAVE IN RED ON IT THAT THIS

MUST BE FILED WITH YORU SONS MEDCIAL RECORDS FOR EVER

MORE?

 

MX

 

In a message dated 10/05/2012 11:32:13 GMT Daylight

Time, peteandlindajohnson@... writes:

 

,

What a complete nightmare! It will be worse in

the UK as doctors are less independent. I have a

fight on my hands just getting my son's bad

reactions to medication and a list of his

symptoms written up on his GP notes. I thought

that would be a good starting place as they

should go everywhere with him. What difference

is it to his GP to write something meaningful

....doctors generally just seem to want to throw

their weight around and show whose boss just for

the sake of it and that seems to be the attitude

of most 'care professionals' (ha!) that I have

come across.

I am going to have to have a serious rethink

about a lot of things if I can't get deputyship

of his welfare. What is the point of it being

something you can apply for if it is always

refused by the judges!!

Sounds to me like your daughter is a very lucky

lady to have you fighting her corner.

 

,

It should NOT be right!!! But......

This is from USA; After going through the

last 6mos trying to get my daughter[27y]

into what seemed like a good residential

setting, what you describe seems to be the

attitude; anyone but parent knows what is

best! - much like the school setting! I had

2 social workers saying the meds/supplements

had to be trimmed to 12 items/day, that

epsom salt baths would not be done, that

topicals and anything not in pill form would

not be given etc. They even said that any

specialist out of our geographical area

would not be acceptable. Thanks heavens for

a doc[out of area]with lots of credentials

who was fully supportive of comprehensive

medical plan and who 'could not in good

conscience remove any of the prescibed

items.' My daughter learned long ago to give

her MB12 injections and topicals because her

father will not when she's w him. She also

had to learn the 2 liquids she uses. All

else was available in pill/capsule form.

There is NO leeway for varying things -

constipation, meltdowns, hyperventilation,

seizures can not be addressed as happen.

Currently, I am allowed to package

supplements for daily use. I need to renew

pharmaceuticals that the overseeing pharmacy

can not get from their supplier if I want

her to stay on the precise med i.e there is

only one thyroid item she can take due to

allergies so that comes from another

pharmacy same w MB12 and a couple of others.

Things went down to the ridiculous and

minute level as we were trying to work this

out w accusations flying left and right. I

hired an attorney who was a great help -

don't have the bill for that yet. Toss in a

dad who bad mouths all the supps and most of

the pharmas and refuses to pay for anything

and it is most difficult.

We have the verbage of 'client rights' here

which applies to anyone older than 18y. If

they[client] refuse, then that is a choice

they can make irrespective of the

consequences. Diet guidelines -gfcfsf and

all allergy free were called into question -

several items provoke delayed seizures!

Thank heavens my daughter is tuned into most

of this. She has 18y olds making life

threatening decisions for her re food and

can 'chose' herself to vary her program. No

one seems to get the picture that our

children are in a sheltered setting for life

because they are unable to make good

decisions for themselves due to the injuries

and toxicities that have overwhelmed them.

Make a detailed list of EVERYTHING you deem

important for your child

diet, exercise[what, how many times or

hours/day/week], social[what, when, how many

times/day/week/month], work[same], what to

do in free time[family, friends, library,

volunteering, programs liked[a horse program

here etc which my daughter loves],

developmental areas you want addressed,

limitations[video, tv, etc] vacation - our

system limits time to a certain number of

days/year 'out of care' - based mainly on

reimbursement for the supervising agency.

Get it in writing!! and keep copies of

everything at each stage. Keep important

parties in the loop - one social worker

totally misrepresented our doc's position

and did it in a email to the 'team' w/o copy

to the doc. Doc was not a happy camper!

Don't delete even what seems like trivia. It

does no good here to 'hope' it will get done

or to not address it. I initially felt like

I was walking on eggshells but then realized

that my daughter needed the same advocacy

[more really] that has been the pattern

through her life. I'd rather be known[and

you bet I am] as a difficult mom than have

her suffer in the setting because 'they

didn't know or couldn't do it' You get some

of the same responses that the regular docs

give when you bring up things like

methylation, chelation, immune dysfunction,

dysbiosis, etc because you're treading on

hallowed ground[the social system vs the

medical system]. The arm of the state is as

strong and as wide as the traditional

medical path and has no trouble using its

might. In the long term they need to

hear/honor all that our children need to

live daily life as successfully as they can.

Right now the older children are just

trickeling into the system. Soon it will be

an onslaught. Sorry this got so long,

>

> Surely this is not right!!!

>

> I am trying to look to the future and

pre empt any problems in the

> future regarding decisions about my

son's welfare when he is deemed to

> be an adult....ie having a say in where

he lives, what medications he is

> put on, etc etc.

>

> Mandi posted this very useful document

:

>

> http://www.challengingbehaviour.org.uk/learning-disability-files/18_Getting-legal-Authority-to-make-decisions-about-money.pdf

>

> Which seems to be saying that

deputyship (a say in his welfare) should

> be applied for if he will be living at

home. So I have been in touch

> with my local MENCAP and been given the

name of a solicitor to use but

> also the name of an independant

solicitor to talk to (Bequest -- a

> panel of independent Lawyers who

specialise in Private Client law,

> including disabled persons trust, power

of attorney. would be happy to

> speak with you and pass on some

information that will save you time and

> steer you in the right direction. )

>

> I have just phoned the independent

solicitor and she said don't bother

> ....judges are not giving out

deputyships as social services and doctors

> etc are more likely to have the young

adult's interest at heart than the

> parents!!!

>

> Has anyone got anywhere with this or

know where else I can get advise, I

> have been left rather confused!

>

> She said all you can do is make sure

things are in place for him ....what!?!

>

> I am already having problems with such

simple straight forward stuff

> like getting his doctors notes to

reflect something that might be

> helpful when we are not around. His

current notes only say he has

> 'verbal apraxia'!!!!!!! and does not

mention his severe life threatening

> reactions to some epilepsy

medications!!!!! The GP has said he will put

> 2 of the medications on the list but

not the 3rd!? and will not list all

> of his difficulties and can we go in to

the surgery to discuss them?!?

>

>

> Really fed up with everything.

>

>

>

No virus found

in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus Database:

2425/4988 - Release Date: 05/09/12

No virus

found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus Database: 2425/4988 - Release Date:

05/09/12

[Guest guest]

Can you move GP's? I would in a flash, if he doesn't put the allergy in then complain to health authority that records are not being properly maintained. Any allergy would have come out on the summary printout whatever software they are using it does that and its negligent for it not to be in there

Mandi ex Practice Manager who summarised and computerised notes

Thanks Mandi, That is exactly what I have done but have just got a letter back saying he will put some stuff on but not others!!! When we went to the hospital a while ago the locum GP printed off like a summary of for us to take to the hospital with him that is to help whoever is dealing with him (presume they all have the same software). It was a seal envelope but I opened it. This is the bit I am trying to get updated with something that is actually meaningful (like life threatening allergic reactions..currently blank and a list of things that would be helpful to anyone treating him eg phobias, understanding level etc). What he has decided to include is all a bit random as our GP is just a bully and showing us who is boss. I have come across this so many times and it is one of the reason that I am now panicking that I will have even less say when he is 18+. Thank goodness he has put the2 most serious ones on...the internal bleeding one was actually denied strenuously at the time in the hospital and it was only admitted that it was the medication verbally by his paediatrician when was 'out of the woods'. I did not think it had been officially noted. It is important that they mention all reactions (obviously) mostly so that it can be clearly seen that he has had a bad reaction to all medications and so to be very wary in the future.We are booking a half hour appointment to 'discuss it'.I have also requested his GP medical records as I was hoping to get this done before he is 18, got a letter back saying he is over 16 and therefore I need his written permission....it has started already! I have sent the form back anyway 'for their consideration', so will see what they do.I wonder how straight forward it would be to set up a very small residential home myself? I know there is one in the local town that looks after 3 adults.... x.

lINDA COULD YOU WRITE A LETTER TO gp WITH THE DETAISLL YOU WANT PUT IN AND HAVE IN RED ON IT THAT THIS MUST BE FILED WITH YORU SONS MEDCIAL RECORDS FOR EVER MORE?

MX

,What a complete nightmare! It will be worse in the UK as doctors are less independent. I have a fight on my hands just getting my son's bad reactions to medication and a list of his symptoms written up on his GP notes. I thought that would be a good starting place as they should go everywhere with him. What difference is it to his GP to write something meaningful ...doctors generally just seem to want to throw their weight around and show whose boss just for the sake of it and that seems to be the attitude of most 'care professionals' (ha!) that I have come across. I am going to have to have a serious rethink about a lot of things if I can't get deputyship of his welfare. What is the point of it being something you can apply for if it is always refused by the judges!!Sounds to me like your daughter is a very lucky lady to have you fighting her corner.

,It should NOT be right!!! But......This is from USA; After going through the last 6mos trying to get my daughter[27y] into what seemed like a good residential setting, what you describe seems to be the attitude; anyone but parent knows what is best! - much like the school setting! I had 2 social workers saying the meds/supplements had to be trimmed to 12 items/day, that epsom salt baths would not be done, that topicals and anything not in pill form would not be given etc. They even said that any specialist out of our geographical area would not be acceptable. Thanks heavens for a doc[out of area]with lots of credentials who was fully supportive of comprehensive medical plan and who 'could not in good conscience remove any of the prescibed items.' My daughter learned long ago to give her MB12 injections and topicals because her father will not when she's w him. She also had to learn the 2 liquids she uses. All else was available in pill/capsule form. There is NO leeway for varying things - constipation, meltdowns, hyperventilation, seizures can not be addressed as happen. Currently, I am allowed to package supplements for daily use. I need to renew pharmaceuticals that the overseeing pharmacy can not get from their supplier if I want her to stay on the precise med i.e there is only one thyroid item she can take due to allergies so that comes from another pharmacy same w MB12 and a couple of others. Things went down to the ridiculous and minute level as we were trying to work this out w accusations flying left and right. I hired an attorney who was a great help - don't have the bill for that yet. Toss in a dad who bad mouths all the supps and most of the pharmas and refuses to pay for anything and it is most difficult. We have the verbage of 'client rights' here which applies to anyone older than 18y. If they[client] refuse, then that is a choice they can make irrespective of the consequences. Diet guidelines -gfcfsf and all allergy free were called into question - several items provoke delayed seizures! Thank heavens my daughter is tuned into most of this. She has 18y olds making life threatening decisions for her re food and can 'chose' herself to vary her program. No one seems to get the picture that our children are in a sheltered setting for life because they are unable to make good decisions for themselves due to the injuries and toxicities that have overwhelmed them. Make a detailed list of EVERYTHING you deem important for your child diet, exercise[what, how many times or hours/day/week], social[what, when, how many times/day/week/month], work[same], what to do in free time[family, friends, library, volunteering, programs liked[a horse program here etc which my daughter loves], developmental areas you want addressed, limitations[video, tv, etc] vacation - our system limits time to a certain number of days/year 'out of care' - based mainly on reimbursement for the supervising agency. Get it in writing!! and keep copies of everything at each stage. Keep important parties in the loop - one social worker totally misrepresented our doc's position and did it in a email to the 'team' w/o copy to the doc. Doc was not a happy camper! Don't delete even what seems like trivia. It does no good here to 'hope' it will get done or to not address it. I initially felt like I was walking on eggshells but then realized that my daughter needed the same advocacy [more really] that has been the pattern through her life. I'd rather be known[and you bet I am] as a difficult mom than have her suffer in the setting because 'they didn't know or couldn't do it' You get some of the same responses that the regular docs give when you bring up things like methylation, chelation, immune dysfunction, dysbiosis, etc because you're treading on hallowed ground[the social system vs the medical system]. The arm of the state is as strong and as wide as the traditional medical path and has no trouble using its might. In the long term they need to hear/honor all that our children need to live daily life as successfully as they can. Right now the older children are just trickeling into the system. Soon it will be an onslaught. Sorry this got so long, >> Surely this is not right!!!> > I am trying to look to the future and pre empt any problems in the > future regarding decisions about my son's welfare when he is deemed to > be an adult....ie having a say in where he lives, what medications he is > put on, etc etc.> > Mandi posted this very useful document :> > http://www.challengingbehaviour.org.uk/learning-disability-files/18_Getting-legal-Authority-to-make-decisions-about-money.pdf> > Which seems to be saying that deputyship (a say in his welfare) should > be applied for if he will be living at home. So I have been in touch > with my local MENCAP and been given the name of a solicitor to use but > also the name of an independant solicitor to talk to (Bequest -- a > panel of independent Lawyers who specialise in Private Client law, > including disabled persons trust, power of attorney. would be happy to > speak with you and pass on some information that will save you time and > steer you in the right direction. )> > I have just phoned the independent solicitor and she said don't bother > ....judges are not giving out deputyships as social services and doctors > etc are more likely to have the young adult's interest at heart than the > parents!!!> > Has anyone got anywhere with this or know where else I can get advise, I > have been left rather confused!> > She said all you can do is make sure things are in place for him ....what!?!> > I am already having problems with such simple straight forward stuff > like getting his doctors notes to reflect something that might be > helpful when we are not around. His current notes only say he has > 'verbal apraxia'!!!!!!! and does not mention his severe life threatening > reactions to some epilepsy medications!!!!! The GP has said he will put > 2 of the medications on the list but not the 3rd!? and will not list all > of his difficulties and can we go in to the surgery to discuss them?!?> > > Really fed up with everything.> > >

No virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.2171 / Virus Database: 2425/4988 - Release Date: 05/09/12

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[Guest guest]

Our local Social Services are doing this as a matter of course, usually bungalows with 2 people but what then do they do all day??

Mx

I wonder how straight forward it would be to set up a very small residential home myself? I know there is one in the local town that looks after 3 adults....

[Guest guest]

Definitely!!

Mx

I have been thinking about this and think it is actually corrupt... if there is a legal process whereby you can get deputyship for welfare then who is directing judges to not grant it ? and surely this is a change in the law effectively without an official change in the law? What do you think? Is this worth pursuing with my MP?

[Guest guest]

Yes it does and its very scarey

Mx

The sort of scenario I'm thinking of is - child X is gf/cf, takes enzymes and epsom salts baths, He turns 18 and as an adult can choose to continue with these or not for himself depending upon his mental capacity to make each individual decision. Along comes social worker, asks questions about diet and treatments, questions whether he can decide, calls in a dietitian (who is probably not knowledgable on the subject!) who follows orthodoxy that diet and other treatments don't help in autism, then the GP and probably the adult psychiatrist are also called in ........ because, perhaps the parents are deluded and not acting in X's best interest. This is where outside evidence, eg from a speialist gastro, is so very, very useful to present to a 'best interests' meeting and, in fact, that sort of evidence is likely to be accepted long before a 'best interests' meeting is called, IME.Does that make sense?Patience> > > > > >> > > > > > Surely this is not right!!!> > > > > > > > > > > > I am trying to look to the future and pre empt any problems in the > > > > > > future regarding decisions about my son's welfare when he is deemed to > > > > > > be an adult....ie having a say in where he lives, what medications he is > > > > > > put on, etc etc.> > > > > > > > > > > > Mandi posted this very useful document :> > > > > > > > > > > > http://www.challengingbehaviour.org.uk/learning-disability-files/18_Getting-legal-Authority-to-make-decisions-about-money.pdf> > > > > > > > > > > > Which seems to be saying that deputyship (a say in his welfare) should > > > > > > be applied for if he will be living at home. So I have been in touch > > > > > > with my local MENCAP and been given the name of a solicitor to use but > > > > > > also the name of an independant solicitor to talk to (Bequest -- a > > > > > > panel of independent Lawyers who specialise in Private Client law, > > > > > > including disabled persons trust, power of attorney. would be happy to > > > > > > speak with you and pass on some information that will save you time and > > > > > > steer you in the right direction. )> > > > > > > > > > > > I have just phoned the independent solicitor and she said don't bother > > > > > > ....judges are not giving out deputyships as social services and doctors > > > > > > etc are more likely to have the young adult's interest at heart than the > > > > > > parents!!!> > > > > > > > > > > > Has anyone got anywhere with this or know where else I can get advise, I > > > > > > have been left rather confused!> > > > > > > > > > > > She said all you can do is make sure things are in place for him ....what!?!> > > > > > > > > > > > I am already having problems with such simple straight forward stuff > > > > > > like getting his doctors notes to reflect something that might be > > > > > > helpful when we are not around. His current notes only say he has > > > > > > 'verbal apraxia'!!!!!!! and does not mention his severe life threatening > > > > > > reactions to some epilepsy medications!!!!! The GP has said he will put > > > > > > 2 of the medications on the list but not the 3rd!? and will not list all > > > > > > of his difficulties and can we go in to the surgery to discuss them?!?> > > > > > > > > > > > > > > > > > Really fed up with everything.> > > > > > > > > > > > > > > > > >> > > > >> > > >> > >> >>

[Guest guest]

With regard to the medical side of things it is worth enquiring whether there are systems in place for adults with learning disabilities. A lot of work has been done on this and you may find your area has something like a "health passport" which can be used in any contact with the health service (GP/hospital/community). The health passport contains information that you provide re medication/communication methods/emotional responses/phobias/things that help me etc etc.

Re: Re: applying to look after my son's welfare at...

Thanks Mandi,

That is exactly what I have done but have just got a letter back

saying he will put some stuff on but not others!!! When we went to

the hospital a while ago the locum GP printed off like a summary of

for us to take to the hospital with him that is to help

whoever is dealing with him (presume they all have the same

software). It was a seal envelope but I opened it. This is the bit I

am trying to get updated with something that is actually meaningful

(like life threatening allergic reactions..currently blank and a

list of things that would be helpful to anyone treating him eg

phobias, understanding level etc).

What he has decided to include is all a bit random as our GP is just

a bully and showing us who is boss. I have come across this so many

times and it is one of the reason that I am now panicking that I

will have even less say when he is 18+. Thank goodness he has put

the2 most serious ones on...the internal bleeding one was actually

denied strenuously at the time in the hospital and it was only

admitted that it was the medication verbally by his paediatrician

when was 'out of the woods'. I did not think it had been

officially noted. It is important that they mention all reactions

(obviously) mostly so that it can be clearly seen that he has had a

bad reaction to all medications and so to be very wary in the

future.

We are booking a half hour appointment to 'discuss it'.

I have also requested his GP medical records as I was hoping to get

this done before he is 18, got a letter back saying he is over 16

and therefore I need his written permission....it has started

already! I have sent the form back anyway 'for their consideration',

so will see what they do.

I wonder how straight forward it would be to set up a very small

residential home myself? I know there is one in the local town that

looks after 3 adults....

x.

lINDA COULD YOU WRITE A LETTER TO gp WITH THE

DETAISLL YOU WANT PUT IN AND HAVE IN RED ON IT THAT THIS

MUST BE FILED WITH YORU SONS MEDCIAL RECORDS FOR EVER

MORE?

MX

In a message dated 10/05/2012 11:32:13 GMT Daylight

Time, peteandlindajohnson@... writes:

,

What a complete nightmare! It will be worse in

the UK as doctors are less independent. I have a

fight on my hands just getting my son's bad

reactions to medication and a list of his

symptoms written up on his GP notes. I thought

that would be a good starting place as they

should go everywhere with him. What difference

is it to his GP to write something meaningful

....doctors generally just seem to want to throw

their weight around and show whose boss just for

the sake of it and that seems to be the attitude

of most 'care professionals' (ha!) that I have

come across.

I am going to have to have a serious rethink

about a lot of things if I can't get deputyship

of his welfare. What is the point of it being

something you can apply for if it is always

refused by the judges!!

Sounds to me like your daughter is a very lucky

lady to have you fighting her corner.

,

It should NOT be right!!! But......

This is from USA; After going through the

last 6mos trying to get my daughter[27y]

into what seemed like a good residential

setting, what you describe seems to be the

attitude; anyone but parent knows what is

best! - much like the school setting! I had

2 social workers saying the meds/supplements

had to be trimmed to 12 items/day, that

epsom salt baths would not be done, that

topicals and anything not in pill form would

not be given etc. They even said that any

specialist out of our geographical area

would not be acceptable. Thanks heavens for

a doc[out of area]with lots of credentials

who was fully supportive of comprehensive

medical plan and who 'could not in good

conscience remove any of the prescibed

items.' My daughter learned long ago to give

her MB12 injections and topicals because her

father will not when she's w him. She also

had to learn the 2 liquids she uses. All

else was available in pill/capsule form.

There is NO leeway for varying things -

constipation, meltdowns, hyperventilation,

seizures can not be addressed as happen.

Currently, I am allowed to package

supplements for daily use. I need to renew

pharmaceuticals that the overseeing pharmacy

can not get from their supplier if I want

her to stay on the precise med i.e there is

only one thyroid item she can take due to

allergies so that comes from another

pharmacy same w MB12 and a couple of others.

Things went down to the ridiculous and

minute level as we were trying to work this

out w accusations flying left and right. I

hired an attorney who was a great help -

don't have the bill for that yet. Toss in a

dad who bad mouths all the supps and most of

the pharmas and refuses to pay for anything

and it is most difficult.

We have the verbage of 'client rights' here

which applies to anyone older than 18y. If

they[client] refuse, then that is a choice

they can make irrespective of the

consequences. Diet guidelines -gfcfsf and

all allergy free were called into question -

several items provoke delayed seizures!

Thank heavens my daughter is tuned into most

of this. She has 18y olds making life

threatening decisions for her re food and

can 'chose' herself to vary her program. No

one seems to get the picture that our

children are in a sheltered setting for life

because they are unable to make good

decisions for themselves due to the injuries

and toxicities that have overwhelmed them.

Make a detailed list of EVERYTHING you deem

important for your child

diet, exercise[what, how many times or

hours/day/week], social[what, when, how many

times/day/week/month], work[same], what to

do in free time[family, friends, library,

volunteering, programs liked[a horse program

here etc which my daughter loves],

developmental areas you want addressed,

limitations[video, tv, etc] vacation - our

system limits time to a certain number of

days/year 'out of care' - based mainly on

reimbursement for the supervising agency.

Get it in writing!! and keep copies of

everything at each stage. Keep important

parties in the loop - one social worker

totally misrepresented our doc's position

and did it in a email to the 'team' w/o copy

to the doc. Doc was not a happy camper!

Don't delete even what seems like trivia. It

does no good here to 'hope' it will get done

or to not address it. I initially felt like

I was walking on eggshells but then realized

that my daughter needed the same advocacy

[more really] that has been the pattern

through her life. I'd rather be known[and

you bet I am] as a difficult mom than have

her suffer in the setting because 'they

didn't know or couldn't do it' You get some

of the same responses that the regular docs

give when you bring up things like

methylation, chelation, immune dysfunction,

dysbiosis, etc because you're treading on

hallowed ground[the social system vs the

medical system]. The arm of the state is as

strong and as wide as the traditional

medical path and has no trouble using its

might. In the long term they need to

hear/honor all that our children need to

live daily life as successfully as they can.

Right now the older children are just

trickeling into the system. Soon it will be

an onslaught. Sorry this got so long,

>

> Surely this is not right!!!

>

> I am trying to look to the future and

pre empt any problems in the

> future regarding decisions about my

son's welfare when he is deemed to

> be an adult....ie having a say in where

he lives, what medications he is

> put on, etc etc.

>

> Mandi posted this very useful document

:

>

> http://www.challengingbehaviour.org.uk/learning-disability-files/18_Getting-legal-Authority-to-make-decisions-about-money.pdf

>

> Which seems to be saying that

deputyship (a say in his welfare) should

> be applied for if he will be living at

home. So I have been in touch

> with my local MENCAP and been given the

name of a solicitor to use but

> also the name of an independant

solicitor to talk to (Bequest -- a

> panel of independent Lawyers who

specialise in Private Client law,

> including disabled persons trust, power

of attorney. would be happy to

> speak with you and pass on some

information that will save you time and

> steer you in the right direction. )

>

> I have just phoned the independent

solicitor and she said don't bother

> ....judges are not giving out

deputyships as social services and doctors

> etc are more likely to have the young

adult's interest at heart than the

> parents!!!

>

> Has anyone got anywhere with this or

know where else I can get advise, I

> have been left rather confused!

>

> She said all you can do is make sure

things are in place for him ....what!?!

>

> I am already having problems with such

simple straight forward stuff

> like getting his doctors notes to

reflect something that might be

> helpful when we are not around. His

current notes only say he has

> 'verbal apraxia'!!!!!!! and does not

mention his severe life threatening

> reactions to some epilepsy

medications!!!!! The GP has said he will put

> 2 of the medications on the list but

not the 3rd!? and will not list all

> of his difficulties and can we go in to

the surgery to discuss them?!?

>

>

> Really fed up with everything.

>

>

>

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in this message.

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found in this message.

Checked by AVG - www.avg.com

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05/09/12

[Guest guest]

Thanks Mandi, that is very useful to know...maybe that is why they

are being so bossy as they are worried about this......yes I think I

will move GPs....I am probably more likely to get a copy of his GP

records from some one else who is not worried about why I want them?

How do you go about moving GPs?....just sign up with another one and

they transfer his records? Do you have to be in their catchment

area?

x

 

Can you move GP's? I would in a flash, if he

doesn't put the allergy in then complain to health

authority that records are not being properly

maintained. Any allergy would have come out on the

summary printout whatever software they are using it

does that and its negligent for it not to be in there

 

Mandi ex Practice Manager who summarised and

computerised notes

 

In a message dated 11/05/2012 11:09:13 GMT Daylight

Time, peteandlindajohnson@... writes:

 

Thanks Mandi,

That is exactly what I have done but have just

got a letter back saying he will put some stuff

on but not others!!! When we went to the

hospital a while ago the locum GP printed off

like a summary of for us to take to the

hospital with him that is to help whoever is

dealing with him (presume they all have the same

software). It was a seal envelope but I opened

it. This is the bit I am trying to get updated

with something that is actually meaningful (like

life threatening allergic reactions..currently

blank and a list of things that would be helpful

to anyone treating him eg phobias, understanding

level etc).

What he has decided to include is all a bit

random as our GP is just a bully and showing us

who is boss. I have come across this so many

times and it is  one of the reason that I am now

panicking that I will have even less say when he

is 18+. Thank goodness he has put the2 most

serious ones on...the internal bleeding one was

actually denied strenuously at the time in the

hospital and it was only admitted that it was

the medication verbally by his paediatrician 

when was 'out of the woods'. I did not

think it had been officially noted. It is

important that they mention all reactions

(obviously) mostly so that it can be clearly

seen that he has had a bad reaction to all

medications and so to be very wary in the

future.

We are booking a half hour appointment to

'discuss it'.

I have also requested his GP medical records as

I was hoping to get this done before he is 18,

got a letter back saying he is over 16 and

therefore I need his written permission....it

has started already! I have sent the form back

anyway 'for their consideration', so will see

what they do.

I wonder how straight forward it would be to set

up a very small residential home myself? I know

there is one in the local town that looks after

3 adults....

x.

On 10/05/2012 13:30, Mum231ASD@...

wrote:

 

lINDA COULD YOU WRITE A LETTER TO

gp WITH THE DETAISLL YOU WANT PUT IN AND

HAVE IN RED ON IT THAT THIS MUST BE FILED

WITH YORU SONS MEDCIAL RECORDS FOR EVER

MORE?

 

MX

 

In a message dated 10/05/2012

11:32:13 GMT Daylight Time, peteandlindajohnson@...

writes:

 

,

What a complete nightmare! It will

be worse in the UK as doctors are

less independent. I have a fight

on my hands just getting my son's

bad reactions to medication and a

list of his symptoms written up on

his GP notes. I thought that would

be a good starting place as they

should go everywhere with him.

What difference is it to his GP to

write something meaningful

....doctors generally just seem to

want to throw their weight around

and show whose boss just for the

sake of it and that seems to be

the attitude of most 'care

professionals' (ha!) that I have

come across.

I am going to have to have a

serious rethink about a lot of

things if I can't get deputyship

of his welfare. What is the point

of it being something you can

apply for if it is always refused

by the judges!!

Sounds to me like your daughter is

a very lucky lady to have you

fighting her corner.

On 09/05/2012 18:51, mbrookh

wrote:

 

,

It should NOT be right!!!

But......

This is from USA; After going

through the last 6mos trying

to get my daughter[27y] into

what seemed like a good

residential setting, what you

describe seems to be the

attitude; anyone but parent

knows what is best! - much

like the school setting! I had

2 social workers saying the

meds/supplements had to be

trimmed to 12 items/day, that

epsom salt baths would not be

done, that topicals and

anything not in pill form

would not be given etc. They

even said that any specialist

out of our geographical area

would not be acceptable.

Thanks heavens for a doc[out

of area]with lots of

credentials who was fully

supportive of comprehensive

medical plan and who 'could

not in good conscience remove

any of the prescibed items.'

My daughter learned long ago

to give her MB12 injections

and topicals because her

father will not when she's w

him. She also had to learn the

2 liquids she uses. All else

was available in pill/capsule

form. There is NO leeway for

varying things - constipation,

meltdowns, hyperventilation,

seizures can not be addressed

as happen. Currently, I am

allowed to package supplements

for daily use. I need to renew

pharmaceuticals that the

overseeing pharmacy can not

get from their supplier if I

want her to stay on the

precise med i.e there is only

one thyroid item she can take

due to allergies so that comes

from another pharmacy same w

MB12 and a couple of others.

Things went down to the

ridiculous and minute level as

we were trying to work this

out w accusations flying left

and right. I hired an attorney

who was a great help - don't

have the bill for that yet.

Toss in a dad who bad mouths

all the supps and most of the

pharmas and refuses to pay for

anything and it is most

difficult.

We have the verbage of 'client

rights' here which applies to

anyone older than 18y. If

they[client] refuse, then that

is a choice they can make

irrespective of the

consequences. Diet guidelines

-gfcfsf and all allergy free

were called into question -

several items provoke delayed

seizures! Thank heavens my

daughter is tuned into most of

this. She has 18y olds making

life threatening decisions for

her re food and can 'chose'

herself to vary her program.

No one seems to get the

picture that our children are

in a sheltered setting for

life because they are unable

to make good decisions for

themselves due to the injuries

and toxicities that have

overwhelmed them.

Make a detailed list of

EVERYTHING you deem important

for your child

diet, exercise[what, how many

times or hours/day/week],

social[what, when, how many

times/day/week/month],

work[same], what to do in free

time[family, friends, library,

volunteering, programs liked[a

horse program here etc which

my daughter loves],

developmental areas you want

addressed, limitations[video,

tv, etc] vacation - our system

limits time to a certain

number of days/year 'out of

care' - based mainly on

reimbursement for the

supervising agency. Get it in

writing!! and keep copies of

everything at each stage. Keep

important parties in the loop

- one social worker totally

misrepresented our doc's

position and did it in a email

to the 'team' w/o copy to the

doc. Doc was not a happy

camper! Don't delete even what

seems like trivia. It does no

good here to 'hope' it will

get done or to not address it.

I initially felt like I was

walking on eggshells but then

realized that my daughter

needed the same advocacy [more

really] that has been the

pattern through her life. I'd

rather be known[and you bet I

am] as a difficult mom than

have her suffer in the setting

because 'they didn't know or

couldn't do it' You get some

of the same responses that the

regular docs give when you

bring up things like

methylation, chelation, immune

dysfunction, dysbiosis, etc

because you're treading on

hallowed ground[the social

system vs the medical system].

The arm of the state is as

strong and as wide as the

traditional medical path and

has no trouble using its

might. In the long term they

need to hear/honor all that

our children need to live

daily life as successfully as

they can. Right now the older

children are just trickeling

into the system. Soon it will

be an onslaught. Sorry this

got so long,

>

> Surely this is not

right!!!

>

> I am trying to look to

the future and pre empt any

problems in the

> future regarding

decisions about my son's

welfare when he is deemed to

> be an adult....ie having

a say in where he lives, what

medications he is

> put on, etc etc.

>

> Mandi posted this very

useful document :

>

> http://www.challengingbehaviour.org.uk/learning-disability-files/18_Getting-legal-Authority-to-make-decisions-about-money.pdf

>

> Which seems to be saying

that deputyship (a say in his

welfare) should

> be applied for if he will

be living at home. So I have

been in touch

> with my local MENCAP and

been given the name of a

solicitor to use but

> also the name of an

independant solicitor to talk

to (Bequest -- a

> panel of independent

Lawyers who specialise in

Private Client law,

> including disabled

persons trust, power of

attorney. would be happy to

> speak with you and pass

on some information that will

save you time and

> steer you in the right

direction. )

>

> I have just phoned the

independent solicitor and she

said don't bother

> ....judges are not giving

out deputyships as social

services and doctors

> etc are more likely to

have the young adult's

interest at heart than the

> parents!!!

>

> Has anyone got anywhere

with this or know where else I

can get advise, I

> have been left rather

confused!

>

> She said all you can do

is make sure things are in

place for him ....what!?!

>

> I am already having

problems with such simple

straight forward stuff

> like getting his doctors

notes to reflect something

that might be

> helpful when we are not

around. His current notes only

say he has

> 'verbal apraxia'!!!!!!!

and does not mention his

severe life threatening

> reactions to some

epilepsy medications!!!!! The

GP has said he will put

> 2 of the medications on

the list but not the 3rd!? and

will not list all

> of his difficulties and

can we go in to the surgery to

discuss them?!?

>

>

> Really fed up with

everything.

>

>

>

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus

Database: 2425/4988 - Release

Date: 05/09/12

No virus found

in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus Database:

2425/4988 - Release Date: 05/09/12

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found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2171 / Virus Database: 2425/4990 - Release Date:

05/10/12