Re: PCT FUNDING long but worth it

[Guest guest]

Well if it's any consolation we have been turned down once and put on "more info needed" 2nd attempt, did they correspond or request info from your DAN?

We are up to them enquiring costs, info and duration from the Doctor, his letter gone out this week so hoping to be considered again in the next few weeks.

At the moment they will do blood draws for us and some testing, but as yet no funding, kind of hoping I can play LEA game on them of trying to grind them down, in the end get so sick of my voice they will pay anything to be rid of me, sure they used to enjoy going to work till I arrived on the scene lol.

Vicky

[Guest guest]

Well if it's any consolation we have been turned down once and put on "more info needed" 2nd attempt, did they correspond or request info from your DAN?

We are up to them enquiring costs, info and duration from the Doctor, his letter gone out this week so hoping to be considered again in the next few weeks.

At the moment they will do blood draws for us and some testing, but as yet no funding, kind of hoping I can play LEA game on them of trying to grind them down, in the end get so sick of my voice they will pay anything to be rid of me, sure they used to enjoy going to work till I arrived on the scene lol.

Vicky

[Guest guest]

Well if it's any consolation we have been turned down once and put on "more info needed" 2nd attempt, did they correspond or request info from your DAN?

We are up to them enquiring costs, info and duration from the Doctor, his letter gone out this week so hoping to be considered again in the next few weeks.

At the moment they will do blood draws for us and some testing, but as yet no funding, kind of hoping I can play LEA game on them of trying to grind them down, in the end get so sick of my voice they will pay anything to be rid of me, sure they used to enjoy going to work till I arrived on the scene lol.

Vicky

[Guest guest]

Hi Jo How much more evidence do they need!! Keep at them, you will win in the end. I guess the most important thing is that Darryl is doing soooo well. He, and his little brother, are very cute! Lovely that they play together now - you can't beat that. TinaJoanne Burke <joanne@...> wrote: Hi to allWell the BAD NEWS is I was turned down for PCT funding today for the second time.Well no surprises there

then.I think I had them rocking for a while but they say the evidence wasnt strong enough. - Cue action plan for appeal.On the brighter side ..its taken so long to get to this point Darryl is going to recover before I get any cash out of them !The good thing about having done the initial batch of tests is that because they were so bad I have a reason to retest on the NHS.My GP is so good.. Hes agreed to do all the blood tests I need, retest aminos in blood and urine cos the private ones showed they were all low.His ferritin (iron stores) were low so good to have that ..so I can keep retesting for all sorts whilst we keep checking his iron levels.Plus now I have evidence of Heavy metal poisoning they will need to monitor him.As I posted earlier the Hospital have xrayed him to show loading and are doing stool tests.So in an ironic kind of way they are treating him without realising

it.Whether I can rely on some of the amino / stool tests is another matter.If I had the cash I would retest his aminos and stool now to see how the two sets of results compare.I feel a letter coming on to the Department of Health to try and get decent supplements on the NHS.I havent updated Darryls story for a while.But wanted you to know that since we started TTFD and Oral DMSA in Jan / Feb he is now reading..his sentences are expanding I no longer worry about his speech beacuse its developing like a normal child now...we managed 2 hours at the cinema..he is answering his brother back..initiating games and has taken to colouring in .We have also been taking him to dancing lessons with his younger brother.Its party dances / okey cokey that kind of thing.Last week he joined in with the hokey cokey which was great.Then I find one of the teachers there is a speech / play therapist for chidren

with autism in Stockport.Talk about landing on my feet !We still havent resolved the sense of danger..he is still in pull ups for the odd poo accident but I think that the loading of bowel wont be helping ..We have the odd meltdowns and arguments with his brother but I say some interaction is better than none and he is still prone to ignore people at times.We still need to improve his co-ordination and concentration and If I could find an omega 3 without citrus flavours or soya that he could tolerate then this would probably help.His sleep has improved but still waking up so hoping for better things when the oxypowder goes to work.So my message to some of the people new to this isWe have only been doing biomed under Muscroft since April last year.(diet for 18 months prior to that)And yes its been a struggle and we have been on a roller coaster ride, fighting to get blood drawn, going through

gut bug die off, going through antivirals , LDN fevers , being scardy cat custards with the MB12's and then we got to Chelation this January.I then I thought Ive got there - like chelation was the be all and end all we all strive for.And then I suddenly realised that I had already had massive gains along the way but if chelation didnt work then there is no hope which got me a bit upset at the time thinking that.But Chelation is working and now I really feel like he is going to make it one day..I am sure I wouldnt have got this far without the support of and the the support of parents on this list -Big thanks go to Mandi , Zoe , Tina (whos little boy 's video is an inspiration to all ) , Sharon , Steph , Steve , Jane to name a few and all the others who have contributed along the way.One day the truth will come out and so will all the mercury (WINK)( Thats a thought ..if its coming out in the urine

then its going back into the sea to feed a few more fish !)I am now turning my thoughts to the 1000's of families who have no idea biomed exists or the ones that cannot afford to do this.Through the treating autism petition we can make our voices heard.There are TWO petitions - one online to the prime minister and a paper one to the house of commons.You need to be UK resident.Please help me get the word out. Mission imposible 4 if you choose to accept is to print some of the paper petitions out and aim for just 50 signatures.www.treatingautism.com click on petition sign online and then printout the paper version.Together we can make a difference..Looking forward to more success stories from other parents.Joanne

[Guest guest]

In a message dated 15/06/2006 14:29:48 GMT Daylight Time, joanne@... writes:

But wanted you to know that since we started TTFD and Oral DMSA in Jan / Feb he is now reading..his sentences are expanding I no longer worry about his speech beacuse its developing like a normal child now...we managed 2 hours at the cinema..he is answering his brother back..initiating games and has taken to colouring in .We have also been taking him to dancing lessons with his younger brother.Its party dances / okey cokey that kind of thing.Last week he joined in with the hokey cokey which was great.Then I find one of the teachers there is a speech / play therapist for chidren with autism in Stockport.Talk about landing on my feet !

>>>Awesome, Sam loves the hokey cokey - the turn around bit is his favourite LOL

Well if you can't get funding what chance have I? The letter is FINALLY going out to the PCT this week and blow me down if it isn;t addressed to Dr A Dawson - bless him, I know this man and worked with him when I was Fundholding Manager at the practise - I feel a "Hi how are you" phone call coming on here - it was him who personally approved the NHS funding I got for Southampton Centre of Complementary Medicine back in 2000 after I phoned him and reminded him who I was - WINK

They didn't call me Miss Whiplash for nothing in those days, god I hope he remembers me he'll be sure to approve it LOL

Fingers crossed and GOOOOOoooooooooooooo Darryl

Mandi x

[Guest guest]

In a message dated 15/06/2006 14:29:48 GMT Daylight Time, joanne@... writes:

But wanted you to know that since we started TTFD and Oral DMSA in Jan / Feb he is now reading..his sentences are expanding I no longer worry about his speech beacuse its developing like a normal child now...we managed 2 hours at the cinema..he is answering his brother back..initiating games and has taken to colouring in .We have also been taking him to dancing lessons with his younger brother.Its party dances / okey cokey that kind of thing.Last week he joined in with the hokey cokey which was great.Then I find one of the teachers there is a speech / play therapist for chidren with autism in Stockport.Talk about landing on my feet !

>>>Awesome, Sam loves the hokey cokey - the turn around bit is his favourite LOL

Well if you can't get funding what chance have I? The letter is FINALLY going out to the PCT this week and blow me down if it isn;t addressed to Dr A Dawson - bless him, I know this man and worked with him when I was Fundholding Manager at the practise - I feel a "Hi how are you" phone call coming on here - it was him who personally approved the NHS funding I got for Southampton Centre of Complementary Medicine back in 2000 after I phoned him and reminded him who I was - WINK

They didn't call me Miss Whiplash for nothing in those days, god I hope he remembers me he'll be sure to approve it LOL

Fingers crossed and GOOOOOoooooooooooooo Darryl

Mandi x

[Guest guest]

Hi Tina

Well I guess your child actually has to recover before they will

fund anything.

The only thing thats going to convince anyone is video footage

combined with test results from a large number of parents.

Which I have and will be showing at the Treating Autism conference

next year.

And even then they will say he spontaneoulsy combusted out of autism.

They will then point out he was misdiagnosed but will not admit

their psychiatrist was to blame in the first place.

oh and their psychologist.

and their educational psychologist..

But having said that..if this treatment worked the psychiatrist

would be out of a job and they wouldnt get any funding for stupid

studies which help nobody.

They will argue a stool test on the NHS which showed nothing cannot

be compared with a metametrix one..due to the fact they were not

done on the same day.

MUPPETS !

So guess I shall appeal and continue with support of my GP who is

brilliant and deserves a clap.

My PCT boss deserves... THE clap.

Watch out for the next installment of Jo takes on the NHS ..

Joanne

I will show them all up at the conference next year !

> Hi to all

>

> Well the BAD NEWS is I was turned down for PCT funding today for

the

> second time.

>

> Well no surprises there then.

>

> I think I had them rocking for a while but they say the evidence

> wasnt strong enough. - Cue action plan for appeal.

>

> On the brighter side ..its taken so long to get to this point

Darryl

> is going to recover before I get any cash out of them !

> The good thing about having done the initial batch of tests is

that

> because they were so bad I have a reason to retest on the NHS.

>

> My GP is so good.. Hes agreed to do all the blood tests I need,

> retest aminos in blood and urine cos the private ones showed they

> were all low.

> His ferritin (iron stores) were low so good to have that ..so I

can

> keep retesting for all sorts whilst we keep checking his iron

levels.

> Plus now I have evidence of Heavy metal poisoning they will need

to

> monitor him.

>

> As I posted earlier the Hospital have xrayed him to show loading

and

> are doing stool tests.

>

> So in an ironic kind of way they are treating him without

realising

> it.

> Whether I can rely on some of the amino / stool tests is another

> matter.

> If I had the cash I would retest his aminos and stool now to see

how

> the two sets of results compare.

>

> I feel a letter coming on to the Department of Health to try and

get

> decent supplements on the NHS.

>

> I havent updated Darryls story for a while.

> But wanted you to know that since we started TTFD and Oral DMSA in

> Jan / Feb he is now reading..his sentences are expanding I no

> longer worry about his speech beacuse its developing like a normal

> child now...we managed 2 hours at the cinema..he is answering his

> brother back..initiating games and has taken to colouring in .

> We have also been taking him to dancing lessons with his younger

> brother.

> Its party dances / okey cokey that kind of thing.

> Last week he joined in with the hokey cokey which was great.

> Then I find one of the teachers there is a speech / play therapist

> for chidren with autism in Stockport.Talk about landing on my

feet !

>

> We still havent resolved the sense of danger..he is still in pull

> ups for the odd poo accident but I think that the loading of bowel

> wont be helping ..

> We have the odd meltdowns and arguments with his brother but I say

> some interaction is better than none and he is still prone to

ignore

> people at times.

> We still need to improve his co-ordination and concentration and

If

> I could find an omega 3 without citrus flavours or soya that he

> could tolerate then this would probably help.

> His sleep has improved but still waking up so hoping for better

> things when the oxypowder goes to work.

>

> So my message to some of the people new to this is

> We have only been doing biomed under Muscroft since April

> last year.

> (diet for 18 months prior to that)

> And yes its been a struggle and we have been on a roller coaster

> ride, fighting to get blood drawn, going through gut bug die off,

> going through antivirals , LDN fevers , being scardy cat custards

> with the MB12's and then we got to Chelation this January.

> I then I thought Ive got there - like chelation was the be all and

> end all we all strive for.

> And then I suddenly realised that I had already had massive gains

> along the way but if chelation didnt work then there is no hope

> which got me a bit upset at the time thinking that.

> But Chelation is working and now I really feel like he is going to

> make it one day..

> I am sure I wouldnt have got this far without the support of Jean

> and the the support of parents on this list -Big thanks go to

> Mandi , Zoe , Tina (whos little boy 's video is an inspiration

> to all ) , Sharon , Steph , Steve , Jane to name a few and all the

> others who have contributed along the way.

>

> One day the truth will come out and so will all the mercury (WINK)

> ( Thats a thought ..if its coming out in the urine then its going

> back into the sea to feed a few more fish !)

>

> I am now turning my thoughts to the 1000's of families who have no

> idea biomed exists or the ones that cannot afford to do this.

> Through the treating autism petition we can make our voices heard.

> There are TWO petitions - one online to the prime minister and a

> paper one to the house of commons.

> You need to be UK resident.

> Please help me get the word out. Mission imposible 4 if you choose

> to accept is to print some of the paper petitions out and aim for

> just 50 signatures.

> www.treatingautism.com click on petition sign online and then

> printout the paper version.

>

> Together we can make a difference..

> Looking forward to more success stories from other parents.

>

> Joanne

>

[Guest guest]

Sorry to hear you didn't get the PCT on your side straight away but

you are getting there anyway. Respect!

Great post

Sharon

>

> Hi to all

>

> Well the BAD NEWS is I was turned down for PCT funding today for

the

> second time.

>

> Well no surprises there then.

>

> I think I had them rocking for a while but they say the evidence

> wasnt strong enough. - Cue action plan for appeal.

>

> On the brighter side ..its taken so long to get to this point

Darryl

> is going to recover before I get any cash out of them !

> The good thing about having done the initial batch of tests is that

> because they were so bad I have a reason to retest on the NHS.

>

> My GP is so good.. Hes agreed to do all the blood tests I need,

> retest aminos in blood and urine cos the private ones showed they

> were all low.

> His ferritin (iron stores) were low so good to have that ..so I can

> keep retesting for all sorts whilst we keep checking his iron

levels.

> Plus now I have evidence of Heavy metal poisoning they will need to

> monitor him.

>

> As I posted earlier the Hospital have xrayed him to show loading

and

> are doing stool tests.

> So in an ironic kind of way they are treating him without realising

> it.

> Whether I can rely on some of the amino / stool tests is another

> matter.

> If I had the cash I would retest his aminos and stool now to see

how

> the two sets of results compare.

>

> I feel a letter coming on to the Department of Health to try and

get

> decent supplements on the NHS.

>

> I havent updated Darryls story for a while.

> But wanted you to know that since we started TTFD and Oral DMSA in

> Jan / Feb he is now reading..his sentences are expanding I no

> longer worry about his speech beacuse its developing like a normal

> child now...we managed 2 hours at the cinema..he is answering his

> brother back..initiating games and has taken to colouring in .

> We have also been taking him to dancing lessons with his younger

> brother.

> Its party dances / okey cokey that kind of thing.

> Last week he joined in with the hokey cokey which was great.

> Then I find one of the teachers there is a speech / play therapist

> for chidren with autism in Stockport.Talk about landing on my feet !

>

> We still havent resolved the sense of danger..he is still in pull

> ups for the odd poo accident but I think that the loading of bowel

> wont be helping ..

> We have the odd meltdowns and arguments with his brother but I say

> some interaction is better than none and he is still prone to

ignore

> people at times.

> We still need to improve his co-ordination and concentration and If

> I could find an omega 3 without citrus flavours or soya that he

> could tolerate then this would probably help.

> His sleep has improved but still waking up so hoping for better

> things when the oxypowder goes to work.

>

> So my message to some of the people new to this is

> We have only been doing biomed under Muscroft since April

> last year.

> (diet for 18 months prior to that)

> And yes its been a struggle and we have been on a roller coaster

> ride, fighting to get blood drawn, going through gut bug die off,

> going through antivirals , LDN fevers , being scardy cat custards

> with the MB12's and then we got to Chelation this January.

> I then I thought Ive got there - like chelation was the be all and

> end all we all strive for.

> And then I suddenly realised that I had already had massive gains

> along the way but if chelation didnt work then there is no hope

> which got me a bit upset at the time thinking that.

> But Chelation is working and now I really feel like he is going to

> make it one day..

> I am sure I wouldnt have got this far without the support of Jean

> and the the support of parents on this list -Big thanks go to

> Mandi , Zoe , Tina (whos little boy 's video is an inspiration

> to all ) , Sharon , Steph , Steve , Jane to name a few and all the

> others who have contributed along the way.

>

> One day the truth will come out and so will all the mercury (WINK)

> ( Thats a thought ..if its coming out in the urine then its going

> back into the sea to feed a few more fish !)

>

> I am now turning my thoughts to the 1000's of families who have no

> idea biomed exists or the ones that cannot afford to do this.

> Through the treating autism petition we can make our voices heard.

> There are TWO petitions - one online to the prime minister and a

> paper one to the house of commons.

> You need to be UK resident.

> Please help me get the word out. Mission imposible 4 if you choose

> to accept is to print some of the paper petitions out and aim for

> just 50 signatures.

> www.treatingautism.com click on petition sign online and then

> printout the paper version.

>

> Together we can make a difference..

> Looking forward to more success stories from other parents.

>

> Joanne

>