Re: Continuing healthcare funding

June 14, 2012

I am currently listing all the nhs hospitals in my area, and all the doctors and consultants working within each of them

I am then listing their specialisms, areas of interest, training, and expertise against each doctor

This is with a view to finding ones that have any kind of knowledge and bias that i can use

So in summary finding supportive nhs doctors

> To: Autism-Biomedical-Europe > Date: Thu, 14 Jun 2012 10:14:37 +0000> Subject: Continuing healthcare funding> > Hi everyone,> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care. > We have been told it is virally impossible these days to get health funding for people with autism.> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.> > Apparently the panel> just want evidence dating back for 1 month only , showing evidence ofhealth needs.> > It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!> Rant over advice anyone?i> > > > ------------------------------------> > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.>

June 14, 2012

I didn;t know there was such a thing. Went to PCT panel and presented to try and get funding but the letter from Heard (DG predesessor) was weak and woolly and that's why I didn;t get it, also probably laughing out loud as Public Health trainee explained about the study that showed Mercury was neuprotective to brain, arghhhhhhhhhhhhhhhhhhhhh, slit wrists, bash head against wall and arghh again. I said OK pal explain to me WHY the second mosttoxic substance on the planet could help my childs brain but he was not allowed to answer, the lay folks were deffo on my side

Mx

Hi everyone,We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care. We have been told it is virally impossible these days to get health funding for people with autism.Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.Apparently the paneljust want evidence dating back for 1 month only , showing evidence ofhealth needs.It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!Rant over advice anyone?i

June 14, 2012

Can't imagine that should take too long!Sent from my iPad

I am currently listing all the nhs hospitals in my area, and all the doctors and consultants working within each of them

I am then listing their specialisms, areas of interest, training, and expertise against each doctor

This is with a view to finding ones that have any kind of knowledge and bias that i can use

So in summary finding supportive nhs doctors

> To: Autism-Biomedical-Europe > Date: Thu, 14 Jun 2012 10:14:37 +0000> Subject: Continuing healthcare funding> > Hi everyone,> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care. > We have been told it is virally impossible these days to get health funding for people with autism.> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.> > Apparently the panel> just want evidence dating back for 1 month only , showing evidence ofhealth needs.> > It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!> Rant over advice anyone?i> > > > ------------------------------------> > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.>

June 14, 2012

Its quite a big job - for example there are 16 relevant main hospitals in Birmingham - in the first one there are approx 180 doctors

CC: autism-biomedical-europe To: Autism-Biomedical-Europe From: butler39@...Date: Thu, 14 Jun 2012 11:25:03 +0100Subject: Re: Continuing healthcare funding

Can't imagine that should take too long!Sent from my iPad

I am currently listing all the nhs hospitals in my area, and all the doctors and consultants working within each of them I am then listing their specialisms, areas of interest, training, and expertise against each doctor This is with a view to finding ones that have any kind of knowledge and bias that i can use So in summary finding supportive nhs doctors

> To: Autism-Biomedical-Europe > Date: Thu, 14 Jun 2012 10:14:37 +0000> Subject: Continuing healthcare funding> > Hi everyone,> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care. > We have been told it is virally impossible these days to get health funding for people with autism.> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.> > Apparently the panel> just want evidence dating back for 1 month only , showing evidence ofhealth needs.> > It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!> Rant over advice anyone?i> > > > ------------------------------------> > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.>

June 14, 2012

Is your daughter an adult? If so - you need to match health needs to her needs identified in assessment done by Social Worker.

Continuing healthcare funding

>

> Hi everyone,

> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care.

> We have been told it is virally impossible these days to get health funding for people with autism.

> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.

>

> Apparently the panel

> just want evidence dating back for 1 mon

th only , showing evidence ofhealth needs.

>

> It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!

> Rant over advice anyone?i

>

> ------------------------------------

>

> DISCLAIMER

> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

>

June 14, 2012

I know you couldn't make it up! I can't decide whether to have a complete blow out in front of the panel and alienate everyone or have one before and try and be calm. Whatever I do probably won't make a jot of difference.Sent from my iPad

I didn;t know there was such a thing. Went to PCT panel and presented to try and get funding but the letter from Heard (DG predesessor) was weak and woolly and that's why I didn;t get it, also probably laughing out loud as Public Health trainee explained about the study that showed Mercury was neuprotective to brain, arghhhhhhhhhhhhhhhhhhhhh, slit wrists, bash head against wall and arghh again. I said OK pal explain to me WHY the second mosttoxic substance on the planet could help my childs brain but he was not allowed to answer, the lay folks were deffo on my side

Mx

Hi everyone,We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care. We have been told it is virally impossible these days to get health funding for people with autism.Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.Apparently the paneljust want evidence dating back for 1 month only , showing evidence ofhealth needs.It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!Rant over advice anyone?i

June 14, 2012

Yeah because the social worker if really qualified to give medical assessment - NOT!

Is your daughter an adult? If so - you need to match health needs to her needs identified in assessment done by Social Worker.

Continuing healthcare funding> > Hi everyone,> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care. > We have been told it is virally impossible these days to get health funding for people with autism.> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.> > Apparently the panel> just want evidence dating back for 1 mon th only , showing evidence ofhealth needs.> > It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!> Rant over advice anyone?i> > > > ------------------------------------> > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.>

June 14, 2012

Sorry yes very labour intensive for minimal rewardSent from my iPad

Its quite a big job - for example there are 16 relevant main hospitals in Birmingham - in the first one there are approx 180 doctors

CC: autism-biomedical-europe To: Autism-Biomedical-Europe From: butler39@...Date: Thu, 14 Jun 2012 11:25:03 +0100Subject: Re: Continuing healthcare funding

Can't imagine that should take too long!Sent from my iPad

I am currently listing all the nhs hospitals in my area, and all the doctors and consultants working within each of them I am then listing their specialisms, areas of interest, training, and expertise against each doctor This is with a view to finding ones that have any kind of knowledge and bias that i can use So in summary finding supportive nhs doctors

> To: Autism-Biomedical-Europe > Date: Thu, 14 Jun 2012 10:14:37 +0000> Subject: Continuing healthcare funding> > Hi everyone,> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care. > We have been told it is virally impossible these days to get health funding for people with autism.> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.> > Apparently the panel> just want evidence dating back for 1 month only , showing evidence ofhealth needs.> > It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!> Rant over advice anyone?i> > > > ------------------------------------> > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.>

June 14, 2012

That's not how it works. The Social Worker refers to specialist health employee for health assessment and possible access to health funding.

Continuing healthcare funding

>

> Hi everyone,

> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care.

> We have been told it is virally impossible these days to get health funding for people with autism.

> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.

>

> Apparently the panel

> just want evidence dating back for 1 mon th only , showing evidence ofhealth needs.

>

> It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!

> Rant over advice anyone?i

>

> ------------------------------------

>

> DISCLAIMER

> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

>

June 14, 2012

Yes daughter 18.Social worker in theory should be keen to try and get health funding so social services don't have to pay as much.She is pretty much defeated "they don't give it for autism"Sent from my iPad

That's not how it works. The Social Worker refers to specialist health employee for health assessment and possible access to health funding.

Continuing healthcare funding

>

> Hi everyone,

> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care.

> We have been told it is virally impossible these days to get health funding for people with autism.

> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.

>

> Apparently the panel

> just want evidence dating back for 1 mon th only , showing evidence ofhealth needs.

>

> It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!

> Rant over advice anyone?i

>

> ------------------------------------

>

> DISCLAIMER

> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

>

June 14, 2012

Thats very negative to say minimal reward - and autism wont be solved with a negative attitude

We have had a very good NHS doctor for the last 4 years who has worked in conjunction with our DAN doctor and Breakspeare - im just searching around to find local ones in more specialist areas now like neurology and ENT

A list of the things i got free on nhs from that doctor include: EEG, MRI, advice on a variety of Rx's, referrals to other specialists within her hospital, stool test, rechecking Breakspear results, genetics, HBOT - but best of all she protects us from the authorities - without her the local authorities can halt your supplements

I had her private email and could get a reply on anything within 48 hours without an appointment required

So I will see if I can find others like her

To: Autism-Biomedical-Europe From: butler39@...Date: Thu, 14 Jun 2012 11:30:48 +0100Subject: Re: Continuing healthcare funding

Sorry yes very labour intensive for minimal rewardSent from my iPad

Its quite a big job - for example there are 16 relevant main hospitals in Birmingham - in the first one there are approx 180 doctors

CC: autism-biomedical-europe To: Autism-Biomedical-Europe From: butler39@...Date: Thu, 14 Jun 2012 11:25:03 +0100Subject: Re: Continuing healthcare funding

Can't imagine that should take too long!Sent from my iPad

I am currently listing all the nhs hospitals in my area, and all the doctors and consultants working within each of them I am then listing their specialisms, areas of interest, training, and expertise against each doctor This is with a view to finding ones that have any kind of knowledge and bias that i can use So in summary finding supportive nhs doctors

> To: Autism-Biomedical-Europe > Date: Thu, 14 Jun 2012 10:14:37 +0000> Subject: Continuing healthcare funding> > Hi everyone,> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care. > We have been told it is virally impossible these days to get health funding for people with autism.> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.> > Apparently the panel> just want evidence dating back for 1 month only , showing evidence ofhealth needs.> > It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!> Rant over advice anyone?i> > > > ------------------------------------> > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.>

June 14, 2012

We got it because the health service assessor (LD nurse) is mother of severely autistic son and is pushing forward cases of autistic adults. That said I think we got it mainly on "mental health" issues which are less contensious. My son's plan has a number of purchases that address health - eg laser/acupuncture to relieve anxiety/behavioural optometry etc re visual problems/listenting prorgrammes re auditory processing.

Continuing healthcare funding

>

> Hi everyone,

> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care.

> We have been told it is virally impossible these days to get health funding for people with autism.

> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.

>

> Apparently the panel

> just want evidence dating back for 1 mon th only , showing evidence ofhealth needs.

>

> It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!

> Rant over advice anyone?i

>

> ------------------------------------

>

> DISCLAIMER

> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

>

June 14, 2012

Ah yes, though they are not doctors from what I recall and there is no motivation on their part to identify needs when they no they cannot be met

Mx

That's not how it works. The Social Worker refers to specialist health employee for health assessment and possible access to health funding.

Continuing healthcare funding> > Hi everyone,> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care. > We have been told it is virally impossible these days to get health funding for people with autism.> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.> > Apparently the panel> just want evidence dating back for 1 mon th only , showing evidence ofhealth needs.> > It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!> Rant over advice anyone?i> > > > ------------------------------------> > DISCLAIMER> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.>

June 14, 2012

We applied but were unsuccessful because NHS currently trying to meet all DS's

known healthcare needs - mental health, gut problems etc.

The assessment was done by a former nurse - she was good. We can reapply and

this first assessment will be used as a baseline.

I've since been told they're running short of funding.... same old story.

Patience

>

> I am currently listing all the nhs hospitals in my area, and all the

doctors and consultants working within each of them

>

> I am then listing their specialisms, areas of interest, training, and

expertise against each doctor

>

> This is with a view to finding ones that have any kind of knowledge and

bias that i can use

>

> So in summary finding supportive nhs doctors

>

> > To: Autism-Biomedical-Europe

> > From: butler39@...

> > Date: Thu, 14 Jun 2012 10:14:37 +0000

> > Subject: Continuing healthcare funding

> >

> > Hi everyone,

> > We are soon to have a meeting to try and gain funding for continuing

healthcare needs.This is to try and get the health service to contribute to

the cost of daughters ongoing care.

> > We have been told it is virally impossible these days to get health

funding for people with autism.

> > Has anyone been through this process either unsuccessfully or not.? Does

anyone have any advice to offer.

> >

> > Apparently the panel

> > just want evidence dating back for 1 mon th only , showing evidence

ofhealth needs.

> >

> > It's all really maddening as the NHS won't properly investigate abnormal

test results we have had done privately eg relating to thyroid, hormones,I,

viral titres (you know the score) and the only evidence they will go on what

the paediatrician tells them. He is extremely dismissive of all our health

concerns.It's maddening that the NHS caused this problem,refused to

investigate or treat it and won't contribute to the cost of ongoing care.

This is a process that kicks in when they are 18 by the way.Don't you just

hate the NHS.!

> > Rant over advice anyone?i

> >

> > ------------------------------------

> >

> > DISCLAIMER

> > No information contained in this post is to be construed as medical

advice. If you need medical advice, please seek it from a suitably qualified

practitioner.

> >

June 14, 2012

It is marvelous to have someone like that to support you. My GP looks at me as to say "There she comes again". I hate it but I am affraid of changing it and get the same or worse, I have changed before, I must add this one is better than the one before.

Continuing healthcare funding

>

> Hi everyone,

> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care.

> We have been told it is virally impossible these days to get health funding for people with autism.

> Has anyone been through this process either unsuccessfully or not.? Does anyone have any

advice to offer.

>

> Apparently the panel

> just want evidence dating back for 1 month only , showing evidence ofhealth needs.

>

> It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!

> Rant over advice anyone?i

>

> ------------------------------------

>

> DISCLAIMER

> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified pract

itioner.

>

June 14, 2012

Surely with autism this should include a specialist mental health assessment

much of the time, especially (?) where there's LD as well.

Margaret

>

> I am currently listing all the nhs hospitals in my area, and all the

doctors and consultants working within each of them

>

> I am then listing their specialisms, areas of interest, training, and

expertise against each doctor

>

> This is with a view to finding ones that have any kind of knowledge and

bias that i can use

>

> So in summary finding supportive nhs doctors

>

> > To: Autism-Biomedical-Europe

> > From: butler39@...

> > Date: Thu, 14 Jun 2012 10:14:37 +0000

> > Subject: Continuing healthcare funding

> >

> > Hi everyone,

> > We are soon to have a meeting to try and gain funding for continuing

healthcare needs.This is to try and get the health service to contribute to

the cost of daughters ongoing care.

> > We have been told it is virally impossible these days to get health

funding for people with autism.

> > Has anyone been through this process either unsuccessfully or not.? Does

anyone have any advice to offer.

> >

> > Apparently the panel

> > just want evidence dating back for 1 mon th only , showing evidence

ofhealth needs.

> >

> > It's all really maddening as the NHS won't properly investigate abnormal

test results we have had done privately eg relating to thyroid, hormones,I,

viral titres (you know the score) and the only evidence they will go on what

the paediatrician tells them. He is extremely dismissive of all our health

concerns.It's maddening that the NHS caused this problem,refused to

investigate or treat it and won't contribute to the cost of ongoing care.

This is a process that kicks in when they are 18 by the way.Don't you just

hate the NHS.!

> > Rant over advice anyone?i

> >

> > ------------------------------------

> >

> > DISCLAIMER

> > No information contained in this post is to be construed as medical

advice. If you need medical advice, please seek it from a suitably qualified

practitioner.

> >

June 14, 2012

HBOT on the NHS !!! Wow, that lady is quite something and that is an

understatement.

Maybe you should invite her to Treating Autism conference, do you think

she would be interested?? Esp the biomed day 9 Sept

http://www.treatingautism.co.uk/events/565/save-the-dates-treating-autism-confer\

ence-2012/

If you would like a flyer to give to her I'll send a few to you. (or email

one if that is an option?)

Natasa

> Thats very negative to say minimal reward - and autism wont be solved with

> a negative attitude

>

> We have had a very good NHS doctor for the last 4 years who has worked in

> conjunction with our DAN doctor and Breakspeare - im just searching around

> to find local ones in more specialist areas now like neurology and ENT

>

> A list of the things i got free on nhs from that doctor include: EEG, MRI,

> advice on a variety of Rx's, referrals to other specialists within her

> hospital, stool test, rechecking Breakspear results, genetics, HBOT - but

> best of all she protects us from the authorities - without her the local

> authorities can halt your supplements

>

> I had her private email and could get a reply on anything within 48 hours

> without an appointment required

>

> So I will see if I can find others like her

>

> To: Autism-Biomedical-Europe

> From: butler39@...

> Date: Thu, 14 Jun 2012 11:30:48 +0100

> Subject: Re: Continuing healthcare funding

>

> Sorry yes very labour intensive for minimal reward

>

> Sent from my iPad

>

> Its quite a big job - for example there are 16 relevant main hospitals in

> Birmingham - in the first one there are approx 180 doctors

>

> CC: autism-biomedical-europe

> To: Autism-Biomedical-Europe

> From: butler39@...

> Date: Thu, 14 Jun 2012 11:25:03 +0100

> Subject: Re: Continuing healthcare funding

>

> Can't imagine that should take too long!

>

> Sent from my iPad

>

> I am currently listing all the nhs hospitals in my area, and all the

> doctors and consultants working within each of them

>

> I am then listing their specialisms, areas of interest, training, and

> expertise against each doctor

>

> This is with a view to finding ones that have any kind of knowledge and

> bias that i can use

>

> So in summary finding supportive nhs doctors

>

>> To: Autism-Biomedical-Europe

>> From: butler39@...

>> Date: Thu, 14 Jun 2012 10:14:37 +0000

>> Subject: Continuing healthcare funding

>>

>> Hi everyone,

>> We are soon to have a meeting to try and gain funding for continuing

>> healthcare needs.This is to try and get the health service to contribute

>> to the cost of daughters ongoing care.

>> We have been told it is virally impossible these days to get health

>> funding for people with autism.

>> Has anyone been through this process either unsuccessfully or not.? Does

>> anyone have any advice to offer.

>>

>> Apparently the panel

>> just want evidence dating back for 1 month only , showing evidence

>> ofhealth needs.

>>

>> It's all really maddening as the NHS won't properly investigate abnormal

>> test results we have had done privately eg relating to thyroid,

>> hormones,I, viral titres (you know the score) and the only evidence they

>> will go on what the paediatrician tells them. He is extremely dismissive

>> of all our health concerns.It's maddening that the NHS caused this

>> problem,refused to investigate or treat it and won't contribute to the

>> cost of ongoing care. This is a process that kicks in when they are 18

>> by the way.Don't you just hate the NHS.!

>> Rant over advice anyone?i

>>

>> ------------------------------------

>>

>> DISCLAIMER

>> No information contained in this post is to be construed as medical

>> advice. If you need medical advice, please seek it from a suitably

>> qualified practitioner.

>>

June 14, 2012

Fantastic, ! This is quite an achievement.

Margaret

>

> I am currently listing all the nhs hospitals in my area, and all the doctors

and consultants working within each of them

>

> I am then listing their specialisms, areas of interest, training, and

expertise against each doctor

>

> This is with a view to finding ones that have any kind of knowledge and bias

that i can use

>

> So in summary finding supportive nhs doctors

>

> > To: Autism-Biomedical-Europe

> > From: butler39@...

> > Date: Thu, 14 Jun 2012 10:14:37 +0000

> > Subject: Continuing healthcare funding

> >

> > Hi everyone,

> > We are soon to have a meeting to try and gain funding for continuing

healthcare needs.This is to try and get the health service to contribute to the

cost of daughters ongoing care.

> > We have been told it is virally impossible these days to get health funding

for people with autism.

> > Has anyone been through this process either unsuccessfully or not.? Does

anyone have any advice to offer.

> >

> > Apparently the panel

> > just want evidence dating back for 1 month only , showing evidence ofhealth

needs.

> >

> > It's all really maddening as the NHS won't properly investigate abnormal

test results we have had done privately eg relating to thyroid, hormones,I,

viral titres (you know the score) and the only evidence they will go on what the

paediatrician tells them. He is extremely dismissive of all our health

concerns.It's maddening that the NHS caused this problem,refused to investigate

or treat it and won't contribute to the cost of ongoing care. This is a process

that kicks in when they are 18 by the way.Don't you just hate the NHS.!

> > Rant over advice anyone?i

> >

> > ------------------------------------

> >

> > DISCLAIMER

> > No information contained in this post is to be construed as medical advice.

If you need medical advice, please seek it from a suitably qualified

practitioner.

> >

June 14, 2012

Well good for you ,but unfortunately your experience seems to be quite contrary to that of most folks with an autistic child that I know.Your Dr sounds like a complete gem,but perhaps the tide is turning, let's hope so.PS if I had a negative attitude I wouldn,t be still plugging away like this still after 18 years.Sent from my iPad

Fantastic, ! This is quite an achievement.

Margaret

>

> I am currently listing all the nhs hospitals in my area, and all the doctors and consultants working within each of them

>

> I am then listing their specialisms, areas of interest, training, and expertise against each doctor

>

> This is with a view to finding ones that have any kind of knowledge and bias that i can use

>

> So in summary finding supportive nhs doctors

>

> > To: Autism-Biomedical-Europe

> > From: butler39@...

> > Date: Thu, 14 Jun 2012 10:14:37 +0000

> > Subject: Continuing healthcare funding

> >

> > Hi everyone,

> > We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care.

> > We have been told it is virally impossible these days to get health funding for people with autism.

> > Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.

> >

> > Apparently the panel

> > just want evidence dating back for 1 month only , showing evidence ofhealth needs.

> >

> > It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!

> > Rant over advice anyone?i

> >

> > ------------------------------------

> >

> > DISCLAIMER

> > No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

> >

June 14, 2012

Many thanks for all your replies regarding health care funding they have given me food for thought. It seems to be quite hit and miss whether it is awarded.KathSent from my iPad

We got it because the health service assessor (LD nurse) is mother of severely autistic son and is pushing forward cases of autistic adults. That said I think we got it mainly on "mental health" issues which are less contensious. My son's plan has a number of purchases that address health - eg laser/acupuncture to relieve anxiety/behavioural optometry etc re visual problems/listenting prorgrammes re auditory processing.

Continuing healthcare funding

>

> Hi everyone,

> We are soon to have a meeting to try and gain funding for continuing healthcare needs.This is to try and get the health service to contribute to the cost of daughters ongoing care.

> We have been told it is virally impossible these days to get health funding for people with autism.

> Has anyone been through this process either unsuccessfully or not.? Does anyone have any advice to offer.

>

> Apparently the panel

> just want evidence dating back for 1 mon th only , showing evidence ofhealth needs.

>

> It's all really maddening as the NHS won't properly investigate abnormal test results we have had done privately eg relating to thyroid, hormones,I, viral titres (you know the score) and the only evidence they will go on what the paediatrician tells them. He is extremely dismissive of all our health concerns.It's maddening that the NHS caused this problem,refused to investigate or treat it and won't contribute to the cost of ongoing care. This is a process that kicks in when they are 18 by the way.Don't you just hate the NHS.!

> Rant over advice anyone?i

>

> ------------------------------------

>

> DISCLAIMER

> No information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

>

June 15, 2012

i like your style peter and its probably a good way of moving forward not just

for you but for all of us. keep us posted with your findings and luck in

getting through with referrals etc.

i'm currently in the process of trying to get eddie followed up by gastro (he's

been on the waiting list for 7 months for colonoscopy/endoscopy), immunologist

and neurologist for seizures. i've been visiting the GP a bit recently trying

to push things through and of course writing to the relevant departments. i'm

also edging to get blood tests taken monthly at home to monitor his liver/kidney

with some of these long term drugs, rather than travelling to sincere health

each month. i haven't had any results so far, but will keep you updated.

would it worth writing to the healthboard i'm wondering, who would be the best

person to contact? any bodies that could speed things up? children's

commissioner?

karenza

> Continuing healthcare funding

> >

> > Hi everyone,

> > We are soon to have a meeting to try and gain funding for continuing

healthcare needs.This is to try and get the health service to contribute to the

cost of daughters ongoing care.

> > We have been told it is virally impossible these days to get health funding

for people with autism.

> > Has anyone been through this process either unsuccessfully or not.? Does

anyone have any advice to offer.

> >

> > Apparently the panel

> > just want evidence dating back for 1 month only , showing evidence ofhealth

needs.

> >

> > It's all really maddening as the NHS won't properly investigate abnormal

test results we have had done privately eg relating to thyroid, hormones,I,

viral titres (you know the score) and the only evidence they will go on what the

paediatrician tells them. He is extremely dismissive of all our health

concerns.It's maddening that the NHS caused this problem,refused to investigate

or treat it and won't contribute to the cost of ongoing care. This is a process

that kicks in when they are 18 by the way.Don't you just hate the NHS.!

> > Rant over advice anyone?i

> >

> > ------------------------------------

> >

> > DISCLAIMER

> > No information contained in this post is to be construed as medical advice.

If you need medical advice, please seek it from a suitably qualified pract

itioner.

> >

June 15, 2012

Hi Kath,

My son will be 18 in Sept, we've been seen by the transitions SW, who

has told us she's referring his case to continuing healthcare because

she feels he has significant health problems. We waiting for one of the

nurses to see us to do an assessment for this, but seems like they are

taking their time, as previously arranged to come and did not show up!!.

Not sure what to expect. All I keep hearing from SW is that there is

more funding from continuing healthcare and if he qualifies " he will end

up in a better position with regards his care needs as an adult " .... I

don't know if this is true. I've failed to understand how the " personal

budget " fits in with funding from health.

So far, I've been told that personal budgets are only existent (here in

Milton Keynes) for elderly people and those with physical disabilities

and NOT for learning difficulties. Don't know why but I feel I'm not

being given the full (correct!) information by SW and not sure where,

how to check.

Kath, I'd really be interested to know how it goes for you and your

daughter.

All the best,

emily x

>

> Hi everyone,

> We are soon to have a meeting to try and gain funding for continuing

healthcare needs.This is to try and get the health service to contribute

to the cost of daughters ongoing care.

> We have been told it is virally impossible these days to get health

funding for people with autism.

> Has anyone been through this process either unsuccessfully or not.?

Does anyone have any advice to offer.

>

> Apparently the panel

> just want evidence dating back for 1 month only , showing evidence

ofhealth needs.

>

> It's all really maddening as the NHS won't properly investigate

abnormal test results we have had done privately eg relating to thyroid,

hormones,I, viral titres (you know the score) and the only evidence they

will go on what the paediatrician tells them. He is extremely dismissive

of all our health concerns.It's maddening that the NHS caused this

problem,refused to investigate or treat it and won't contribute to the

cost of ongoing care. This is a process that kicks in when they are 18

by the way.Don't you just hate the NHS.!

> Rant over advice anyone?i

>

June 16, 2012

One difference between social care funding and health funding is that your son (if he has any money) may have to contribute to costs whereas health funding is not means tested. That said I do not know what level of money your son would have to have before he has to contribute. I've never heard of anyone who has just DLA etc benefits having to contribute and in most cases that is all our kids have. Maybe someone else knows more.

I think the level of funding you would get is constant whether it is social care funded or health care funded or jointly funded as this level is determined by the Assessment and the resultant indicative budget. This is based on defined "needs" rather than costs as I understand it.

And, finally, MK definately funds adults with learning difficulties - though I'm guessing the most likely outcome is joint funding.

Re: Continuing healthcare funding

Hi Kath,

My son will be 18 in Sept, we've been seen by the transitions SW, who

has told us she's referring his case to continuing healthcare because

she feels he has significant health problems. We waiting for one of the

nurses to see us to do an assessment for this, but seems like they are

taking their time, as previously arranged to come and did not show up!!.

Not sure what to expect. All I keep hearing from SW is that there is

more funding from continuing healthcare and if he qualifies "he will end

up in a better position with regards his care needs as an adult".... I

don't know if this is true. I've failed to understand how the "personal

budget" fits in with funding from health.

So far, I've been told that personal budgets are only existent (here in

Milton Keynes) for elderly people and those with physical disabilities

and NOT for learning difficulties. Don't know why but I feel I'm not

being given the full (correct!) information by SW and not sure where,

how to check.

Kath, I'd really be interested to know how it goes for you and your

daughter.

All the best,

emily x

>

> Hi everyone,

> We are soon to have a meeting to try and gain funding for continuing

healthcare needs.This is to try and get the health service to contribute

to the cost of daughters ongoing care.

> We have been told it is virally impossible these days to get health

funding for people with autism.

> Has anyone been through this process either unsuccessfully or not.?

Does anyone have any advice to offer.

>

> Apparently the panel

> just want evidence dating back for 1 month only , showing evidence

ofhealth needs.

>

> It's all really maddening as the NHS won't properly investigate

abnormal test results we have had done privately eg relating to thyroid,

hormones,I, viral titres (you know the score) and the only evidence they

will go on what the paediatrician tells them. He is extremely dismissive

of all our health concerns.It's maddening that the NHS caused this

problem,refused to investigate or treat it and won't contribute to the

cost of ongoing care. This is a process that kicks in when they are 18

by the way.Don't you just hate the NHS.!

> Rant over advice anyone?i

>

June 16, 2012

Hi In our case the learning disability nurses came out on numerous occasions to take notes and go through daughters history, over the course of about a year.This was to do the checklist.After that it was decided her case would go to panel .Her panel meeting comes up in a couple of weeks time. We have been asked to provide a detailed diary of behaviours dating back 4 weeks only.It sounds like the best chance of getting funding is on mental health rather than physical health grounds.If you don't already, start keeping a detailed diary also recording all the behaviour problem your son experiences in great detail. Keep incident reports and school diaries etc as evidence, as evidence is what they are looking for apparently.It seems a very hit and miss affair especially if your kid is having a calm settled spell in the 4 weeks prior to the panel meeting.Other parents have told me ongoing funding is more stable and less likely to be pulled if healthcare is granted.I will let you know how we get onBWKathSent from my iPad