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

[Guest]

Originally Posted by Kev Harrison

You are missing the point. I am doing what I am doing for every Autistic child.

If Nottingham can get away with what they have done, mark my words, every PCT will do the same.

I have lots of room for living..

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Hope you can but I'm afraid every PCT works differently. This is very apparent with families on here as to what some can get and others can't. I not knocking you for trying of course

[Kev Harrison]

Originally Posted by mainecoon lover

Hope you can but I'm afraid every PCT works differently. This is very apparent with families on here as to what some can get and others can't. I not knocking you for trying of course

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I realise that all PCT's work differently, you get nothing in Nottingham without trying. What you have to remember is that they all have to follow UK law though. This is where many try to get away with things, because they are not challenged.

I had to take our PCT all the way to a tribunal - to get them to fund Daniel's medical treatment abroad, I created a precedent for all kids in the UK now to be treated on the NHS at the Kinderklinik in Austria if they have serious feeding issues and need their therapy.

That's all kids in the UK. Simply by fighting hard enough and long enough. It's just me, but CAN'T isn't in my vocabulary.

I have been reading the Disability and Equality act now and am ready to speak to the PCT once again.

Interesting that I got a call from a Speech and Language therapist call me and plead with me to challenge her employers.

The BBC are visiting tomorrow for an interview for Radio.

Whatever anyone thinks about me or what I do, I always give it 100% and try to improve things.

[Guest]

Originally Posted by Kev Harrison

I realise that all PCT's work differently, you get nothing in Nottingham without trying. What you have to remember is that they all have to follow UK law though. This is where many try to get away with things, because they are not challenged.

I had to take our PCT all the way to a tribunal - to get them to fund Daniel's medical treatment abroad, I created a precedent for all kids in the UK now to be treated on the NHS at the Kinderklinik in Austria if they have serious feeding issues and need their therapy.

That's all kids in the UK. Simply by fighting hard enough and long enough. It's just me, but CAN'T isn't in my vocabulary.

I have been reading the Disability and Equality act now and am ready to speak to the PCT once again.

Interesting that I got a call from a Speech and Language therapist call me and plead with me to challenge her employers.

The BBC are visiting tomorrow for an interview for Radio.

Whatever anyone thinks about me or what I do, I always give it 100% and try to improve things.

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No one is saying you don't give 100% but so do other families on here, may be in different ways. We all cope as best we can. I have always stood my ground for Beth and got 99% of what she is entitled to. Sadly there does come a time where we don't get or do not have the energy to fight. Last year we fought solidly for a year to get Beth the wheelchair we knew was best for her. The pct tried everything to not allow her, even telling me she was now bed ridden and I needed to accept this. I proved them wrong for my daughters sake and she is sitting happily in the chair I knew was best for her. They wasted so much money on chairs they thought were best. I am so glad this battle was last year as I really don't think I would of had the energy for it this year, what with Beth's health. We should never prejudge or judge families.

[Kev Harrison]

Originally Posted by mainecoon lover

No one is saying you don't give 100% but so do other families on here, may be in different ways. We all cope as best we can. I have always stood my ground for Beth and got 99% of what she is entitled to. Sadly there does come a time where we don't get or do not have the energy to fight. Last year we fought solidly for a year to get Beth the wheelchair we knew was best for her. The pct tried everything to not allow her, even telling me she was now bed ridden and I needed to accept this. I proved them wrong for my daughters sake and she is sitting happily in the chair I knew was best for her. They wasted so much money on chairs they thought were best. I am so glad this battle was last year as I really don't think I would of had the energy for it this year, what with Beth's health. We should never prejudge or judge families.

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I really think you are getting the wrong end of the stick here. I'm not prejudging anyone. We all know how hard it is.

I am saying what I do. That's all! No offence intended.

[Kev Harrison]

Today after a year of lobbying and writing a mission statement, my company want me to take part in a working group with the intention of getting more disabled people into our company One of the largest in the world.

[Guest]

For every family which includes a child with special needs fighting their way through the system for services their child needs is a way of life and I am sure we have all had some hard battles to fight. I don't believe any parent here ever does less than their absolute best for their child, but you are very lucky indeed if you have the energy and resources to spend every single day fighting, fundraising, seeking publicity, lobbying or whatever. For many parents there are just too many other demands on their time and energy or they need some time out from the battles from time to time. For some parents the day-to-day caring for their child demands 100% of their time and effort and there is just no space for anything else. We do not all enjoy good health and limitless energy and you cannot possibly criticise anyone in that situation.

It is often upsetting to see how differently resources are allocated in other parts of the country, we certainly do not all have access to the same level of services or funding. Legislation can be interpreted very differently. The sad fact is that we all live in a country with limited and decreasing resources for these services and it will often be a case of 'he who shouts loudest' so actually fighting for more for your child could mean even less resources for others. It's infuriating that disabled kids can't get the vital support they need due to cost constraints yet a certain politician can spend half a million on a no expense spared trip to watch the golf

[Kev Harrison]

Originally Posted by loadsapixiedust

you are very lucky indeed if you have the energy and resources to spend every single day fighting, fundraising, seeking publicity, lobbying or whatever.

We do not all enjoy good health and limitless energy and you cannot possibly criticise anyone in that situation.

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Please look at post 54..

I have found unlimited energy and sometimes stay awake all night to do what needs to be done. Then go to work managing my department. I was told by a psychologist in Austria, this happens to 5% of people that go through a trauma, something in their brain switches on. I'm putting it to good use for as many people as possible.

Some people spend their life wondering why they are here, we all know why we are and thank god for that..

[hunnybun]

Originally Posted by mainecoon lover

No one is saying you don't give 100% but so do other families on here, may be in different ways. We all cope as best we can. I have always stood my ground for Beth and got 99% of what she is entitled to. Sadly there does come a time where we don't get or do not have the energy to fight. Last year we fought solidly for a year to get Beth the wheelchair we knew was best for her. The pct tried everything to not allow her, even telling me she was now bed ridden and I needed to accept this. I proved them wrong for my daughters sake and she is sitting happily in the chair I knew was best for her. They wasted so much money on chairs they thought were best. I am so glad this battle was last year as I really don't think I would of had the energy for it this year, what with Beth's health. We should never prejudge or judge families.

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It is so obvious how hard you and many others on here work for the right to get what you know is correct for your child, but you are right, there are times that energy has to be used in different ways, and for different things; sure doesn't make us less of an advocate for our kids. It is such a shame that professionals think they know better than a parent, and often I think it is that that is the hardest thing to fight..that somehow you are less qualified to have a wiser opinion on your own child's needs.

Originally Posted by loadsapixiedust

For every family which includes a child with special needs fighting their way through the system for services their child needs is a way of life and I am sure we have all had some hard battles to fight. I don't believe any parent here ever does less than their absolute best for their child, but you are very lucky indeed if you have the energy and resources to spend every single day fighting, fundraising, seeking publicity, lobbying or whatever. For many parents there are just too many other demands on their time and energy or they need some time out from the battles from time to time. For some parents the day-to-day caring for their child demands 100% of their time and effort and there is just no space for anything else. We do not all enjoy good health and limitless energy and you cannot possibly criticise anyone in that situation.

It is often upsetting to see how differently resources are allocated in other parts of the country, we certainly do not all have access to the same level of services or funding. Legislation can be interpreted very differently. The sad fact is that we all live in a country with limited and decreasing resources for these services and it will often be a case of 'he who shouts loudest' so actually fighting for more for your child could mean even less resources for others. It's infuriating that disabled kids can't get the vital support they need due to cost constraints yet a certain politician can spend half a million on a no expense spared trip to watch the golf

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Well said. I am appalled at the lack of resources available to some families in certain areas, even between neighbouring PCTs, but this brings me back to what I was saying. One person opinion on what a pot of money is to be spent on may differ vastly from another, dependant on where they are coming from..for every Kev fighting for children's services, there will be another fighting for dementia care, cancer treatment, fertility treatment, psychiatric care, home ventilation, TPN, etc etc. and whilst I absolutely agree that monies can be better used, the needs will always outweigh the resources.

[DIBBadmin]

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