6 year old Autistic children lose Speech and Language therapy in Nottingham

[WickedPlans]

If the therapy is removed because of his disability then that is clear discrimination and must be addressed.
We have to keep fighting because no-one else will.

[Kev Harrison]

Originally Posted by WickedPlans

If the therapy is removed because of his disability then that is clear discrimination and must be addressed.
We have to keep fighting because no-one else will.

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Exactly. It just takes someone with the balls to challenge it.

[Kev Harrison]

Originally Posted by scottiedogz

Now I am going to sound like a right old grumpy woman here but you might as well get used to it - as the mother of a 17 year old disabled daughter I have fought and fought for her whole life to get some of the most basic thing she has needed. Sometimes we have won other time s we lost but I have learnt that it is a pretty hopeless cause fighting the system. Once you get to the dreadful stage of "transition" you might as well jump off a cliff - almost all funding is lost for a child that turns into an adult and you do wonder why you fought for the past 17 years to get to a state of nothingness - no speech and language provision, along with no physio, no funding for a wheelchair when it is needed and even if the health professionals tell you your child could die tomorrow you still have to prove they need continuing health care funding - as they might not be eligible - even though they need 24 hour nursing care..
I wish you luck Kev, your son deserves every bit of help he can get but you might be better off spending your time fundraising for a private SALT. Do check his statement though - as previous poster said if salt is on his statement then they legally have to make that provision - don't forget that the salt would also have a lot if input into eating so that avenue should be followed as well!
Sorry to be so down, but as you can probably tell we are very disheartened with the system.

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I will never get used to anything. If you accept mediocrity, that's what you get.

I created a precedent by becoming the first person to get NHS funding to take Daniel to Graz for his feeding issues. I'll do it again now..

[Guest]

Originally Posted by scottiedogz

Now I am going to sound like a right old grumpy woman here but you might as well get used to it - as the mother of a 17 year old disabled daughter I have fought and fought for her whole life to get some of the most basic thing she has needed. Sometimes we have won other time s we lost but I have learnt that it is a pretty hopeless cause fighting the system. Once you get to the dreadful stage of "transition" you might as well jump off a cliff - almost all funding is lost for a child that turns into an adult and you do wonder why you fought for the past 17 years to get to a state of nothingness - no speech and language provision, along with no physio, no funding for a wheelchair when it is needed and even if the health professionals tell you your child could die tomorrow you still have to prove they need continuing health care funding - as they might not be eligible - even though they need 24 hour nursing care..
I wish you luck Kev, your son deserves every bit of help he can get but you might be better off spending your time fundraising for a private SALT. Do check his statement though - as previous poster said if salt is on his statement then they legally have to make that provision - don't forget that the salt would also have a lot if input into eating so that avenue should be followed as well!
Sorry to be so down, but as you can probably tell we are very disheartened with the system.

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Was going to say exactly the same. Beth has no physio, speech and language or input from the visually impaired team. To get the basics is a fight. They think its down to us warn out parents to do all these things. The state of our country that only the minority see, yet we dish out dosh to other countries

[Guest]

Originally Posted by Kev Harrison

I will never get used to anything. If you accept mediocrity, that's what you get.

I created a precedent by becoming the first person to get NHS funding to take Daniel to Graz for his feeding issues. I'll do it again now..

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Good luck with that. I'm a fighter for my daughter and always have been, yet there comes a time even the strong willed can not win these battles.

[BarryandCaron]

Originally Posted by mainecoon lover

Good luck with that. I'm a fighter for my daughter and always have been, yet there comes a time even the strong willed can not win these battles.

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I totally agree with you there Michelle

Caron

[jemett]

Originally Posted by mainecoon lover

Good luck with that. I'm a fighter for my daughter and always have been, yet there comes a time even the strong willed can not win these battles.

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Exactly Michelle, Teddy had his occupational therapy withdrawn to lack of funding and tbh I can't be bothered with fighting to get some more therapy. His paediatrician tried to re-refer him and all we got was a one off appointment and tbh she was useless, I manage better OT for teddy at home!

[Kev Harrison]

Originally Posted by mainecoon lover

Good luck with that. I'm a fighter for my daughter and always have been, yet there comes a time even the strong willed can not win these battles.

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You can win these battles, depends how you fight.

We were told Dan would never walk, talk, eat or drink. I though xxxx that - I'll see, raised £37,000 in 67 days, ended up all over the world on different channels with out story. He now does all four to varying degrees.

Dan had his OT taken away, lobbied the PCT, started legal action and they caved in..

Then I became the first parent to gain funding to take a child abroad to the specialist clinic in Austria, setting a precedent for other kids.

I'll never throw in the towel. My solicitor said I am the most determined client she has ever seen, I just think I'm doing what any other parent would do. From experience - that's not true though.

[Kev Harrison]

Originally Posted by jemett

Exactly Michelle, Teddy had his occupational therapy withdrawn to lack of funding and tbh I can't be bothered with fighting to get some more therapy.

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Couldn't be bothered?

[BarryandCaron]

Originally Posted by Kev Harrison

Couldn't be bothered?

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None of us know what anyone goes through with their disabled children/young adults. I've known parents to be physically and mentally drained from the day to day caring of their child without the added pressure and stress of fighting the system. The OP has already said the therapy she got was useless so why bother fighting for that.

Caron