<![CDATA[Parents of disabled children-Special needs forum support group - In the News]]> http://www.parentsofdisabledchildren.co.uk/ Mon, 06 Sep 2010 08:38:42 +0000 MyBB <![CDATA[Trust failure]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=3274 Fri, 03 Sep 2010 19:40:47 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=3274

Mr Justice Treacy held that more than 40 requests from families to the Western Health and Social Care Trust should have been addressed differently.

His ruling came in a case involving an autistic teenager from Co Tyrone whose psychotic tendencies and intense dislike of females led to him attempting to hang himself and threatening his younger sister in 2008.

The 14-year-old's mother, whose role as his main carer led to her having a complete breakdown, brought judicial review proceedings after being told there was no budget available to meet her assessed needs.

Mr Justice Treacy set out how the Trust had not replied to her initial request for a fresh assessment and did not respond to further correspondence.

He said: "Given the crisis situation this family faced the failure to respond to these letters was simply shameful."

A social worker who did carry out an assessment on the boy's mother - who is separated from his father - recorded that she had no family to assist her and urgently needed time out from her caring role.

A formal complaint was later lodged by her legal representatives in the Children's Law Centre over the Trust's failure to answer correspondence for a fresh assessment.

The judge also heard evidence that this was only one example of a systematic failure to conduct assessments in its area.

Commending the Children's Law Centre for bringing together a "comprehensive and compelling picture of the scope and intensity of difficulties in this field", he said it appeared that 41 families had received letters indicating a lack of current capacity to carry out carer's assessments.

Mr Justice Treacy granted three declarations sought by the mother:

•The duty on the Trust includes a duty to provide a range and level of personal social services to the children in need within its area and to the families and carers of those children in order to safeguard and promote the welfare of the children and the upbringing of those children by their families;

•The Trust was in breach of its duty by failing to carry out an assessment on the applicant's mother as a carer of a disabled child within a reasonable time frame following her request to do so on 29 January 2009;

•The Trust acted in breach of its duty by failing to carry out assessments within a reasonable time of carers of disabled children who had requested such an assessment during the period 2007-2010.

Following his judgement, Eamonn McNally, mental health solicitor with the Children's Law Centre, said the case had the potential to impact on hundreds of people.

"We have a number of already ongoing cases of families in similar situations with either can't get an assessment carried out within a reasonable period or access to the appropriate services once those assessments are carried out," he said.

"This has been a major step forward in how families in need are treated", he added.

"It is essential within the current financial climate and with proposed cuts in health being imminent that services for children in need and their families are protected."

The mother of the autistic teenager - who now lives with his father - expressed hope that the ruling could help others.

She said: "The Trust made me feel as if I was exaggerating all our problems in order to offload my son.

"It's too late to help me because our family is split up. I just see my son a few times a week and have to make arrangements that the wee girl is not there.

"The only thing that makes it good for me is it will help other people. If it even helped one other family to not have the isolation we had it will be worthwhile."




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]]>

Mr Justice Treacy held that more than 40 requests from families to the Western Health and Social Care Trust should have been addressed differently.

His ruling came in a case involving an autistic teenager from Co Tyrone whose psychotic tendencies and intense dislike of females led to him attempting to hang himself and threatening his younger sister in 2008.

The 14-year-old's mother, whose role as his main carer led to her having a complete breakdown, brought judicial review proceedings after being told there was no budget available to meet her assessed needs.

Mr Justice Treacy set out how the Trust had not replied to her initial request for a fresh assessment and did not respond to further correspondence.

He said: "Given the crisis situation this family faced the failure to respond to these letters was simply shameful."

A social worker who did carry out an assessment on the boy's mother - who is separated from his father - recorded that she had no family to assist her and urgently needed time out from her caring role.

A formal complaint was later lodged by her legal representatives in the Children's Law Centre over the Trust's failure to answer correspondence for a fresh assessment.

The judge also heard evidence that this was only one example of a systematic failure to conduct assessments in its area.

Commending the Children's Law Centre for bringing together a "comprehensive and compelling picture of the scope and intensity of difficulties in this field", he said it appeared that 41 families had received letters indicating a lack of current capacity to carry out carer's assessments.

Mr Justice Treacy granted three declarations sought by the mother:

•The duty on the Trust includes a duty to provide a range and level of personal social services to the children in need within its area and to the families and carers of those children in order to safeguard and promote the welfare of the children and the upbringing of those children by their families;

•The Trust was in breach of its duty by failing to carry out an assessment on the applicant's mother as a carer of a disabled child within a reasonable time frame following her request to do so on 29 January 2009;

•The Trust acted in breach of its duty by failing to carry out assessments within a reasonable time of carers of disabled children who had requested such an assessment during the period 2007-2010.

Following his judgement, Eamonn McNally, mental health solicitor with the Children's Law Centre, said the case had the potential to impact on hundreds of people.

"We have a number of already ongoing cases of families in similar situations with either can't get an assessment carried out within a reasonable period or access to the appropriate services once those assessments are carried out," he said.

"This has been a major step forward in how families in need are treated", he added.

"It is essential within the current financial climate and with proposed cuts in health being imminent that services for children in need and their families are protected."

The mother of the autistic teenager - who now lives with his father - expressed hope that the ruling could help others.

She said: "The Trust made me feel as if I was exaggerating all our problems in order to offload my son.

"It's too late to help me because our family is split up. I just see my son a few times a week and have to make arrangements that the wee girl is not there.

"The only thing that makes it good for me is it will help other people. If it even helped one other family to not have the isolation we had it will be worthwhile."




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]]> <![CDATA[Family win 18 year fight over MMR damage to son ]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=3187 Sun, 29 Aug 2010 08:16:23 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=3187
The judgment is the first of its kind to be revealed since concerns were raised about the safety of the triple jab.

Robert Fletcher, 18, is unable to talk, stand unaided or feed himself.

He endures frequent epileptic fits and requires round-the-clock care from his parents Jackie and John, though he is not autistic.

He suffered the devastating effects after being given the combined measles, mumps and rubella vaccine when he was 13 months old.

The Department of Health had always denied that the jab was the cause of Robert’s disability.

But now, in a judgment which will give hope to hundreds of other parents whose children have been severely affected by routine vaccinations, a medical assessment panel consisting of two doctors and a barrister has concluded that MMR was to blame.

Robert’s mother Jackie said the money would help with his care, though she described the amount as ‘derisory’.

Her first application for compensation under the Government’s Vaccine Damage Payment Scheme was rejected in 1997 on the grounds that it was impossible to prove beyond reasonable doubt what had caused Robert’s illness.

But Mrs Fletcher appealed and in a ruling delivered last week, a new panel of experts came to a different conclusion.

In a six-page judgment, they said: ‘Robert was a more or less fit boy who, within the period usually considered relevant to immunisation, developed a severe convulsion... and he then went on to be epileptic and severely retarded.

‘The seizure occurred ten days after the vaccination. In our view, this cannot be put down to coincidence.

'It is this temporal association that provides the link. It is this that has shown on the balance of probabilities that the vaccination triggered the epilepsy.

'On this basis, we find that Robert is severely disabled as a result of vaccination and this is why we allowed the appeal.’

The ruling will reignite the debate over the safety of common childhood vaccines, although it makes clear that Robert’s case does not involve autism.

There is one other reported case of a family being given compensation as a result of an MMR jab.

But Mrs Fletcher said she believed the compensation award to Robert was the first to a surviving MMR-damaged person since controversy erupted in 1998 when the now discredited Dr Andrew Wakefield raised concerns about a possible link between the combined MMR injection and autism.

He has since been struck off the medical register.

The Government refuses to say how many awards have been directly attributed to this jab rather than other inoculations against illnesses such as diphtheria or whooping cough.

Details of successful claims involving vaccine-damaged children are seldom publicised because the Department of Health is thought to be anxious not to encourage a rush of applications.

Figures released in 2005 under the Freedom of Information Act revealed that tribunals had paid out £3.5 million over the previous eight years.

The Department for Work and Pensions, which administers the Vaccine Damage Payment Scheme, said: ‘We do not hold any information on how many awards have been MMR-related.

'It is not a requirement when a case is being assessed for the medical adviser to state which vaccine the damage has been attributed to.

'Nor is it a requirement to list the disabling condition that gave rise to the award.’

The controversy over a suggested link between MMR and autism erupted in 1998 when Dr Wakefield published a paper in The Lancet medical journal.

His work has since been discredited and earlier this year Dr Wakefield, who has moved to America, was struck off the medical register after the General Medical Council ruled that he had acted against the interests of patients and ‘failed in his duties as a responsible consultant’.

Robert Fletcher does not suffer from autism. But Mrs Fletcher, from Warrington, Cheshire, said the ruling would give hope to hundreds of other parents fighting to prove that their children’s disabilities were caused by the MMR injection.

Mrs Fletcher set up and runs pressure group JABS - Justice, Awareness and Basic
Support.

Around 2,000 families seeking compensation for their vaccine-damaged children are registered with the group, which provides advice and support.

‘My husband John and I have battled for 18 years for the cause of Robert’s disability to be officially recognised,’ she said.

‘We were told the vaccine was perfectly safe. Like most people, we trusted what the doctors and nurses were putting to us.

'Robert is nearly 19 but mentally he is like a 14-month-old toddler. He can’t stand unaided and he is doubly incontinent.

'He can’t speak except to say “Hi, Mum” or “Hi, Daddy”.

‘We chop up his food and have to anticipate all his needs. He is prone to various illnesses and last week suffered around 40 severe epileptic seizures.

'In April this year, we thought we’d lost him. He contracted a chest infection and had to go to hospital for several days.

‘He is such a lovely boy. When he’s not ill, he’s so cheerful and seems to take everything on the chin. In between seizures he says “Hi, Mum” and tries to kiss me.

‘The money is a derisory amount though it will help with making adaptations to the house for Robert’s benefit.

'What matters is the recognition that MMR was the reason this happened.’

The first doctor who assessed Robert under the compensation scheme in 1996 concluded that he had suffered a ‘simple febrile convulsion with no long-lasting consequences’.

Although he agreed that Robert had a degree of disability, he refused to accept that the MMR vaccine was to blame.

At this month’s appeal, evidence was given by a leading expert on vaccine-damaged children, paediatric neurologist Dr Marcel Kinsbourne. He explained the biological changes which had occurred in Robert’s brain following the vaccination.

The one-day hearing was chaired by a barrister sitting with two doctors, Professor Sundara Lingam, a former consultant at Great Ormond Street Hospital for Children, and Dr Adrian Allaway.

In a dissenting judgment, Professor Lingam said he believed Robert was ‘genetically predisposed to epilepsy and that the vaccination triggered it rather than caused it.

'Robert would have developed epilepsy in any event, even if he had not had the vaccination’.

But Professor Lingam was overruled by his two colleagues.

In their final judgment, they accepted that MMR had caused Robert’s illness but added: ‘We would stress that this decision is fact-specific and it should not be seen as a precedent for any other case.

'In particular, it has no relevance to the issue... as to whether there is a link between the MMR vaccine and autism.’

Last night, Tory MP Nadine Dorries, a member of the powerful Commons Health Committee, said: ‘If an independent panel has reached the conclusion that there has been a link between the MMR vaccine and the brain damage suffered by this boy in this case, then it is fair to assume that there could be as many as thousands of children and parents in the same position.

‘There should be full and easy access to all documentation relating to the judgment for any parent or professional to read and assess.’

Dr Michael Fitzpatrick, a London GP whose own son is autistic, said: ‘It is a very important principle that parents should be compensated in cases of this kind.

'But although a causal link has been established in law in this instance, exhaustive scientific research has failed to establish any link between MMR and brain damage.

'This case should not make parents feel any different about the safety of the vaccine.’

The Department of Health said: ‘This decision reflects the opinion of a tribunal on the specific facts of the case and they were clear that it should not be seen as a precedent for any other case.

'The safety of MMR has been endorsed through numerous studies in many countries.’

For MMR campaigners, the Robert Fletcher ruling is a small but significant milestone in their efforts to prove that the vaccine is not safe for a few children, even though the Government insists it is and that serious reactions are rare.

The triple jab was introduced in 1988, and has been given to millions of children as part of their vaccination schedule, which includes inoculations for 12 diseases.

The vast majority of children suffer no more than redness and swelling around the injection site or a fever that can be easily treated.

But a small number suffer serious reactions. The official figure is one in a million, but campaigners believe that is an underestimate.

Up to 2,000 parents remain convinced their children have suffered significant harm from MMR but have been unable to prove it.

This new decision will give them hope, even though compensation panels do not officially recognise autism claims.

Campaigner Polly Tommey, who edits the magazine The Autism File and believes her son Billy is autistic because of MMR, says: ‘This is fantastic news. Now doctors can’t tell me that the MMR is safe.

'This payout is evidence that it is not safe. It’s interesting that they will look at epilepsy
and not autism, and you have to ask why.

'Is it because the compensation would be billions?’

Parents have tried to get the medical profession and the Government to investigate their claims that MMR damaged their children but have failed so far.

A group of parents brought a case in 1993 which was blocked after their legal aid was withdrawn in 2003.

They claimed for various injuries including autism, Guillain-Barre syndrome, epilepsy, sensorineural deafness, diabetes and arthritis.

Robert’s mother Jackie Fletcher, who set up the vaccine campaign group JABS, is one of a group of parents who continued to fight.

His compensation comes 12 years after the London-based paediatrician Andrew Wakefield claimed a link between MMR and autism.

He was struck off this year after the General Medical Council judged his research to be flawed.

Claiming compensation for any vaccine-related disability is notoriously difficult.

Mrs Fletcher said: ‘Only one in 200 parents who applies to the Vaccine Damage Payment Scheme is successful in receiving compensation.

'Claims for autism are not considered. There are 120 MMR cases waiting to be heard, but none is for autism.’

In America, 4,000 parents are claiming compensation for MMR damage, but again the courts will not officially look at cases where autism is mentioned.

However, cases involving autism do slip through the net.

Bailey Banks, who suffered seizures 16 days after receiving the MMR jab and was diagnosed with pervasive developmental disorder, an autistic condition, was paid compensation.

So was Ben Zeller, who suffered seizures, while Hannah Poling, who is autistic, was paid in secret.

Another 1,820 cases of brain damage caused by vaccines in the U.S., including MMR, have been settled in private.

Mrs Fletcher hopes that the 2,000 families registered with JABS will be awarded legal aid to continue their cases.

She says: ‘We plan to talk to our MP Andy Burnham about the anomalies in the Vaccine Damage Payments Act, the main one being that you can apply for compensation only if a child has died after the age of two.

'We have a number of children on our books who died younger after receiving MMR, but they are not eligible to claim.

'Most vaccines are given at two, three and four months old, so this rule makes no sense.

‘Robert was 13 months old when he had his seizure and, under the rules today, he wouldn’t be eligible to claim.’]]>
The judgment is the first of its kind to be revealed since concerns were raised about the safety of the triple jab.

Robert Fletcher, 18, is unable to talk, stand unaided or feed himself.

He endures frequent epileptic fits and requires round-the-clock care from his parents Jackie and John, though he is not autistic.

He suffered the devastating effects after being given the combined measles, mumps and rubella vaccine when he was 13 months old.

The Department of Health had always denied that the jab was the cause of Robert’s disability.

But now, in a judgment which will give hope to hundreds of other parents whose children have been severely affected by routine vaccinations, a medical assessment panel consisting of two doctors and a barrister has concluded that MMR was to blame.

Robert’s mother Jackie said the money would help with his care, though she described the amount as ‘derisory’.

Her first application for compensation under the Government’s Vaccine Damage Payment Scheme was rejected in 1997 on the grounds that it was impossible to prove beyond reasonable doubt what had caused Robert’s illness.

But Mrs Fletcher appealed and in a ruling delivered last week, a new panel of experts came to a different conclusion.

In a six-page judgment, they said: ‘Robert was a more or less fit boy who, within the period usually considered relevant to immunisation, developed a severe convulsion... and he then went on to be epileptic and severely retarded.

‘The seizure occurred ten days after the vaccination. In our view, this cannot be put down to coincidence.

'It is this temporal association that provides the link. It is this that has shown on the balance of probabilities that the vaccination triggered the epilepsy.

'On this basis, we find that Robert is severely disabled as a result of vaccination and this is why we allowed the appeal.’

The ruling will reignite the debate over the safety of common childhood vaccines, although it makes clear that Robert’s case does not involve autism.

There is one other reported case of a family being given compensation as a result of an MMR jab.

But Mrs Fletcher said she believed the compensation award to Robert was the first to a surviving MMR-damaged person since controversy erupted in 1998 when the now discredited Dr Andrew Wakefield raised concerns about a possible link between the combined MMR injection and autism.

He has since been struck off the medical register.

The Government refuses to say how many awards have been directly attributed to this jab rather than other inoculations against illnesses such as diphtheria or whooping cough.

Details of successful claims involving vaccine-damaged children are seldom publicised because the Department of Health is thought to be anxious not to encourage a rush of applications.

Figures released in 2005 under the Freedom of Information Act revealed that tribunals had paid out £3.5 million over the previous eight years.

The Department for Work and Pensions, which administers the Vaccine Damage Payment Scheme, said: ‘We do not hold any information on how many awards have been MMR-related.

'It is not a requirement when a case is being assessed for the medical adviser to state which vaccine the damage has been attributed to.

'Nor is it a requirement to list the disabling condition that gave rise to the award.’

The controversy over a suggested link between MMR and autism erupted in 1998 when Dr Wakefield published a paper in The Lancet medical journal.

His work has since been discredited and earlier this year Dr Wakefield, who has moved to America, was struck off the medical register after the General Medical Council ruled that he had acted against the interests of patients and ‘failed in his duties as a responsible consultant’.

Robert Fletcher does not suffer from autism. But Mrs Fletcher, from Warrington, Cheshire, said the ruling would give hope to hundreds of other parents fighting to prove that their children’s disabilities were caused by the MMR injection.

Mrs Fletcher set up and runs pressure group JABS - Justice, Awareness and Basic
Support.

Around 2,000 families seeking compensation for their vaccine-damaged children are registered with the group, which provides advice and support.

‘My husband John and I have battled for 18 years for the cause of Robert’s disability to be officially recognised,’ she said.

‘We were told the vaccine was perfectly safe. Like most people, we trusted what the doctors and nurses were putting to us.

'Robert is nearly 19 but mentally he is like a 14-month-old toddler. He can’t stand unaided and he is doubly incontinent.

'He can’t speak except to say “Hi, Mum” or “Hi, Daddy”.

‘We chop up his food and have to anticipate all his needs. He is prone to various illnesses and last week suffered around 40 severe epileptic seizures.

'In April this year, we thought we’d lost him. He contracted a chest infection and had to go to hospital for several days.

‘He is such a lovely boy. When he’s not ill, he’s so cheerful and seems to take everything on the chin. In between seizures he says “Hi, Mum” and tries to kiss me.

‘The money is a derisory amount though it will help with making adaptations to the house for Robert’s benefit.

'What matters is the recognition that MMR was the reason this happened.’

The first doctor who assessed Robert under the compensation scheme in 1996 concluded that he had suffered a ‘simple febrile convulsion with no long-lasting consequences’.

Although he agreed that Robert had a degree of disability, he refused to accept that the MMR vaccine was to blame.

At this month’s appeal, evidence was given by a leading expert on vaccine-damaged children, paediatric neurologist Dr Marcel Kinsbourne. He explained the biological changes which had occurred in Robert’s brain following the vaccination.

The one-day hearing was chaired by a barrister sitting with two doctors, Professor Sundara Lingam, a former consultant at Great Ormond Street Hospital for Children, and Dr Adrian Allaway.

In a dissenting judgment, Professor Lingam said he believed Robert was ‘genetically predisposed to epilepsy and that the vaccination triggered it rather than caused it.

'Robert would have developed epilepsy in any event, even if he had not had the vaccination’.

But Professor Lingam was overruled by his two colleagues.

In their final judgment, they accepted that MMR had caused Robert’s illness but added: ‘We would stress that this decision is fact-specific and it should not be seen as a precedent for any other case.

'In particular, it has no relevance to the issue... as to whether there is a link between the MMR vaccine and autism.’

Last night, Tory MP Nadine Dorries, a member of the powerful Commons Health Committee, said: ‘If an independent panel has reached the conclusion that there has been a link between the MMR vaccine and the brain damage suffered by this boy in this case, then it is fair to assume that there could be as many as thousands of children and parents in the same position.

‘There should be full and easy access to all documentation relating to the judgment for any parent or professional to read and assess.’

Dr Michael Fitzpatrick, a London GP whose own son is autistic, said: ‘It is a very important principle that parents should be compensated in cases of this kind.

'But although a causal link has been established in law in this instance, exhaustive scientific research has failed to establish any link between MMR and brain damage.

'This case should not make parents feel any different about the safety of the vaccine.’

The Department of Health said: ‘This decision reflects the opinion of a tribunal on the specific facts of the case and they were clear that it should not be seen as a precedent for any other case.

'The safety of MMR has been endorsed through numerous studies in many countries.’

For MMR campaigners, the Robert Fletcher ruling is a small but significant milestone in their efforts to prove that the vaccine is not safe for a few children, even though the Government insists it is and that serious reactions are rare.

The triple jab was introduced in 1988, and has been given to millions of children as part of their vaccination schedule, which includes inoculations for 12 diseases.

The vast majority of children suffer no more than redness and swelling around the injection site or a fever that can be easily treated.

But a small number suffer serious reactions. The official figure is one in a million, but campaigners believe that is an underestimate.

Up to 2,000 parents remain convinced their children have suffered significant harm from MMR but have been unable to prove it.

This new decision will give them hope, even though compensation panels do not officially recognise autism claims.

Campaigner Polly Tommey, who edits the magazine The Autism File and believes her son Billy is autistic because of MMR, says: ‘This is fantastic news. Now doctors can’t tell me that the MMR is safe.

'This payout is evidence that it is not safe. It’s interesting that they will look at epilepsy
and not autism, and you have to ask why.

'Is it because the compensation would be billions?’

Parents have tried to get the medical profession and the Government to investigate their claims that MMR damaged their children but have failed so far.

A group of parents brought a case in 1993 which was blocked after their legal aid was withdrawn in 2003.

They claimed for various injuries including autism, Guillain-Barre syndrome, epilepsy, sensorineural deafness, diabetes and arthritis.

Robert’s mother Jackie Fletcher, who set up the vaccine campaign group JABS, is one of a group of parents who continued to fight.

His compensation comes 12 years after the London-based paediatrician Andrew Wakefield claimed a link between MMR and autism.

He was struck off this year after the General Medical Council judged his research to be flawed.

Claiming compensation for any vaccine-related disability is notoriously difficult.

Mrs Fletcher said: ‘Only one in 200 parents who applies to the Vaccine Damage Payment Scheme is successful in receiving compensation.

'Claims for autism are not considered. There are 120 MMR cases waiting to be heard, but none is for autism.’

In America, 4,000 parents are claiming compensation for MMR damage, but again the courts will not officially look at cases where autism is mentioned.

However, cases involving autism do slip through the net.

Bailey Banks, who suffered seizures 16 days after receiving the MMR jab and was diagnosed with pervasive developmental disorder, an autistic condition, was paid compensation.

So was Ben Zeller, who suffered seizures, while Hannah Poling, who is autistic, was paid in secret.

Another 1,820 cases of brain damage caused by vaccines in the U.S., including MMR, have been settled in private.

Mrs Fletcher hopes that the 2,000 families registered with JABS will be awarded legal aid to continue their cases.

She says: ‘We plan to talk to our MP Andy Burnham about the anomalies in the Vaccine Damage Payments Act, the main one being that you can apply for compensation only if a child has died after the age of two.

'We have a number of children on our books who died younger after receiving MMR, but they are not eligible to claim.

'Most vaccines are given at two, three and four months old, so this rule makes no sense.

‘Robert was 13 months old when he had his seizure and, under the rules today, he wouldn’t be eligible to claim.’]]> <![CDATA[stem cells?]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=3029 Thu, 19 Aug 2010 08:18:51 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=3029

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I know my feelings are that we should be at least doing more trials in this country and that if I was offered it as a healing solution for myself I would grab it with both hands...... would you?]]>

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I know my feelings are that we should be at least doing more trials in this country and that if I was offered it as a healing solution for myself I would grab it with both hands...... would you?]]> <![CDATA[Brain scan for Autism]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2907 Tue, 10 Aug 2010 19:00:09 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2907 <![CDATA[don't know!!]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2802 Tue, 03 Aug 2010 16:29:49 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2802
I'm sure there's a lot of people out there in the same boat, that have no help what so ever, so what are we going to do, my daughters don't have a clue and they will be with us until one of us passes away or we become to ill to look after them ourselves. But what if it comes out of the blue, what can we do to protect our children as adults in years to come from this sort of thing??

I'm sorry to put this on here if it upsets people.]]>
I'm sure there's a lot of people out there in the same boat, that have no help what so ever, so what are we going to do, my daughters don't have a clue and they will be with us until one of us passes away or we become to ill to look after them ourselves. But what if it comes out of the blue, what can we do to protect our children as adults in years to come from this sort of thing??

I'm sorry to put this on here if it upsets people.]]> <![CDATA[Tax credit overpayments]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2748 Sat, 31 Jul 2010 10:03:53 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2748
At the moment credits are based on a family's own estimate of income for the coming year, with households allowed to earn an extra £25,000 before they have to pay money back to the government.

But over the next 18 months that buffer will be reduced to £5,000, meaning that many families could face repayments.

One expert warned the number of overpayments would "rocket".

The warning comes on the last day that people can renew this year's claims for either working tax credit or child tax credit.

The changes to the overpayments buffer were announced in the Budget and will be implemented from next April.

Campaigners fear many more people than currently have to repay money will be hit - people like Sarah Holding, a single mother from Wigan who works as a receptionist.

She claims both working and child tax credit, but because she has changed jobs frequently over the last year, and her childcare has altered, she has been overpaid.

She has now been told she now owes Revenue and Customs just over £2,000.

"Obviously I don't have that kind of money," says Sarah, who has put her house up for sale and is seeking cheaper accommodation.

She accepts she has to pay it back, but finding £40 out of her weekly budget is hard-going.

As a result, she says, she has been having sleepless nights, and suffering from severe stress.

"The worst case scenario is: I've not got the money - I'm going to end up in jail," she says.
Budget changes

Sarah is far from being alone.

Last year more than a million families were overpaid child or working tax credit, and more than £2bn was written off by the government.

So the government announced changes in last month's Budget designed to recoup some of that money.

At the moment the tax credit a household gets is based on its own estimate of annual income.

The government has allowed people to earn an extra £25,000 over that estimate before it asks for a refund.

But from next April, that leeway, or buffer, will be reduced to £10,000. The following year it will be cut to £5,000, meaning many more families face being asked to pay money back.

Lee Healey, a benefits expert, thinks the consequences will be serious.

"I would expect overpayments to rocket, and for many more people to be hit with an overpayment of their tax credits."
'Antiquated system'

On Thursday, Work and Pensions Secretary Iain Duncan Smith announced a wholesale reform of the benefits system, describing it as "antiquated".

The idea is to provide better incentives for people to return to work, and to cut down on bureaucracy.

He hinted that one problem with working and child tax credits is the fact that families have to predict their income a year in advance.

"In future," he said, "you will not have to project forward, like you do with tax credits, for a year, and guess what people might be doing."

However, the Department for Work and Pensions has admitted such changes will take a few years to implement.

As a result some organisations which represent single parents are concerned about the timescale.

Kate Bell, from Gingerbread, welcomed the government's plans, but said action was needed much more urgently.

"We'd like to see a system that takes overpayments out of the system, where people aren't having to deal with that stress."

She recommends a system that would pay a fixed amount for six months.]]>
At the moment credits are based on a family's own estimate of income for the coming year, with households allowed to earn an extra £25,000 before they have to pay money back to the government.

But over the next 18 months that buffer will be reduced to £5,000, meaning that many families could face repayments.

One expert warned the number of overpayments would "rocket".

The warning comes on the last day that people can renew this year's claims for either working tax credit or child tax credit.

The changes to the overpayments buffer were announced in the Budget and will be implemented from next April.

Campaigners fear many more people than currently have to repay money will be hit - people like Sarah Holding, a single mother from Wigan who works as a receptionist.

She claims both working and child tax credit, but because she has changed jobs frequently over the last year, and her childcare has altered, she has been overpaid.

She has now been told she now owes Revenue and Customs just over £2,000.

"Obviously I don't have that kind of money," says Sarah, who has put her house up for sale and is seeking cheaper accommodation.

She accepts she has to pay it back, but finding £40 out of her weekly budget is hard-going.

As a result, she says, she has been having sleepless nights, and suffering from severe stress.

"The worst case scenario is: I've not got the money - I'm going to end up in jail," she says.
Budget changes

Sarah is far from being alone.

Last year more than a million families were overpaid child or working tax credit, and more than £2bn was written off by the government.

So the government announced changes in last month's Budget designed to recoup some of that money.

At the moment the tax credit a household gets is based on its own estimate of annual income.

The government has allowed people to earn an extra £25,000 over that estimate before it asks for a refund.

But from next April, that leeway, or buffer, will be reduced to £10,000. The following year it will be cut to £5,000, meaning many more families face being asked to pay money back.

Lee Healey, a benefits expert, thinks the consequences will be serious.

"I would expect overpayments to rocket, and for many more people to be hit with an overpayment of their tax credits."
'Antiquated system'

On Thursday, Work and Pensions Secretary Iain Duncan Smith announced a wholesale reform of the benefits system, describing it as "antiquated".

The idea is to provide better incentives for people to return to work, and to cut down on bureaucracy.

He hinted that one problem with working and child tax credits is the fact that families have to predict their income a year in advance.

"In future," he said, "you will not have to project forward, like you do with tax credits, for a year, and guess what people might be doing."

However, the Department for Work and Pensions has admitted such changes will take a few years to implement.

As a result some organisations which represent single parents are concerned about the timescale.

Kate Bell, from Gingerbread, welcomed the government's plans, but said action was needed much more urgently.

"We'd like to see a system that takes overpayments out of the system, where people aren't having to deal with that stress."

She recommends a system that would pay a fixed amount for six months.]]> <![CDATA[Urgent review into medicals for ESA]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2717 Wed, 28 Jul 2010 18:51:20 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2717
Work and pensions minister Chris Grayling is conducting an urgent review into a new medical test for incapacity benefit after fresh figures showed only 6% of those tested were deemed to be totally incapable of working.

The figures, covering all new claims from October 2008 to the end of November 2009, show 39% are being tested as fit for work and a further 37% are dropping their claim before the assessment is complete. The figures are widely out of line with estimates initially made by officials from the Department for Work and Pensions.

The figures suggest that either tens of thousands of incapacity benefit claimants are not as ill as they claimed, or that something is wrong with the way the tests are being applied which is the most likely of the two. So far the tests have applied only to new claimants for the employment support allowance, the successor benefit to incapacity benefit, but ministers are planning to apply the test to nearly 1.6 million people already on incapacity benefit over the next three years or so.

Speaking to the Guardian , Grayling today did not seize on the figures to claim there was an army of scroungers, but said instead many people had been made anxious about the figures.
He did not suggest there was an army of scroungers, but said: "We do not think and nor does anybody else think there is anything wrong in principle about these tests. Almost every major group working with people suffering long-term disability or sickness wants them to have the opportunity to get back into the workplace. But we have to look at how [the tests] are working in practice."

"There is quite a lot of anxiety around about the details of these tests, and whether we are categorising correctly. These tests need to be applied sensitively, especially in cases of depression or mental health. A lot of organisations such as the CAB and Mind have come to us to say they are concerned about how the tests are being applied."

A new scrutiny group set up by Grayling met for the first time yesterday to advise him on claimants. Its members believe the tests are not being applied sufficiently flexibly. The scrutiny group is due to report by the end of the year with proposals for reform to medical tests.

Paul Farmer, Mind's chief executive and a member of the scrutiny panel, welcomed the Grayling review. "Simplistic use of the basic figures around failed ESA (employment support allowance) applications only serve to fuel the negative rhetoric around benefits, which in itself can have a devastating impact on people with mental health problems who find themselves labelled as 'benefits scroungers' regardless of their genuine needs," Farmer said.

Grayling defended the principle of the tests. "Nothing has been done about the 2.2m people that have been on IB (incapacity benefit). Many of them have not been seen or been in contact with the state for a very long time.

"They have been on the fringes of society being paid benefits every month but actually with no help, guidance or support at all. Our plan is to put 1.6m of these people through an independent medical assessment between 2011 and 2014. It is a huge challenge and has never been attempted before."

The remainder – approximately 600,000 – will not be tested since they are due to reach retirement age before the test can be applied to them.

Those that are deemed fully capable of work are put straight on to jobseeker's allowance, and those deemed potentially capable of work will be put in a higher rate form of employment support allowance.]]>
Work and pensions minister Chris Grayling is conducting an urgent review into a new medical test for incapacity benefit after fresh figures showed only 6% of those tested were deemed to be totally incapable of working.

The figures, covering all new claims from October 2008 to the end of November 2009, show 39% are being tested as fit for work and a further 37% are dropping their claim before the assessment is complete. The figures are widely out of line with estimates initially made by officials from the Department for Work and Pensions.

The figures suggest that either tens of thousands of incapacity benefit claimants are not as ill as they claimed, or that something is wrong with the way the tests are being applied which is the most likely of the two. So far the tests have applied only to new claimants for the employment support allowance, the successor benefit to incapacity benefit, but ministers are planning to apply the test to nearly 1.6 million people already on incapacity benefit over the next three years or so.

Speaking to the Guardian , Grayling today did not seize on the figures to claim there was an army of scroungers, but said instead many people had been made anxious about the figures.
He did not suggest there was an army of scroungers, but said: "We do not think and nor does anybody else think there is anything wrong in principle about these tests. Almost every major group working with people suffering long-term disability or sickness wants them to have the opportunity to get back into the workplace. But we have to look at how [the tests] are working in practice."

"There is quite a lot of anxiety around about the details of these tests, and whether we are categorising correctly. These tests need to be applied sensitively, especially in cases of depression or mental health. A lot of organisations such as the CAB and Mind have come to us to say they are concerned about how the tests are being applied."

A new scrutiny group set up by Grayling met for the first time yesterday to advise him on claimants. Its members believe the tests are not being applied sufficiently flexibly. The scrutiny group is due to report by the end of the year with proposals for reform to medical tests.

Paul Farmer, Mind's chief executive and a member of the scrutiny panel, welcomed the Grayling review. "Simplistic use of the basic figures around failed ESA (employment support allowance) applications only serve to fuel the negative rhetoric around benefits, which in itself can have a devastating impact on people with mental health problems who find themselves labelled as 'benefits scroungers' regardless of their genuine needs," Farmer said.

Grayling defended the principle of the tests. "Nothing has been done about the 2.2m people that have been on IB (incapacity benefit). Many of them have not been seen or been in contact with the state for a very long time.

"They have been on the fringes of society being paid benefits every month but actually with no help, guidance or support at all. Our plan is to put 1.6m of these people through an independent medical assessment between 2011 and 2014. It is a huge challenge and has never been attempted before."

The remainder – approximately 600,000 – will not be tested since they are due to reach retirement age before the test can be applied to them.

Those that are deemed fully capable of work are put straight on to jobseeker's allowance, and those deemed potentially capable of work will be put in a higher rate form of employment support allowance.]]> <![CDATA[Under occupied council tenants forced to move]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2712 Wed, 28 Jul 2010 16:35:29 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2712 Ministers are preparing to launch a 'house swap' scheme which is likely to affect hundreds of thousands of people.

According to official figures, a total of 234,000 households in the social tenant sector are overcrowded while 456,000 are under-occupied, meaning people have more than one extra spare room.
A further 1,159,000 households have more rooms than is standard for a family of their size.

The Work and Pensions department is now drawing up plans to slash housing benefit payments to those tenants who live in houses that are too big for them - meaning many will have to move into smaller properties.

If they could afford to pay the difference themselves to stay where they are it will raise questions about their eligibility for housing benefit in the first place.

The move is likely to prove controversial, since 'empty nest' couples who have lived in council houses for decades and seen their children vacate rooms when they leave home are among those who will be affected.

But Welfare Reform Minister Lord Freud told the Daily Mail: 'We cannot continue with this absurd situation where some of our poorest families have to live in overcrowded conditions while others are subsidised to live in big homes with plenty of spare room.
Lord Freud said the restrictions, which will come into effect from April 2013, will only apply to people of working age, sparing pensioners from the trauma of having to move from their homes.

The Government plans to work with local authorities to ensure that the housing stock is more 'sensibly utilised' and that entitlement to social housing reflects family size.

Specific detail is yet to be agreed, but the principle would be that working-age housing benefit claimants who are living in a property that is too large for their household size will have their benefit capped.
It is expected that overall weekly caps will be set at £250 for a one-bed property, £290 for a two-bed, £340 for a three-bed and £400 for a four-bed.

This means the highest amount people will be paid in housing benefit will be just over £20,000 a year, rather than the current highest level of £104,000. In total, 3.3million tenants- 70 per cent of housing benefit recipients- live in the social sector at an annual cost of more than £12billion.

In last month's emergency Budget, Chancellor George Osborne also announced that instead of people on housing benefit being able to claim rent of up to half of the local average, they will instead be only able to claim up to one third.

And unemployed people who claim JobSeeker's Allowance for 12 months will also see their housing benefit cut by ten per cent.
Campaigners claim the draconian nature of the benefit reforms will put 750,000 people at risk of losing their homes in London and the South East.]]> Ministers are preparing to launch a 'house swap' scheme which is likely to affect hundreds of thousands of people.

According to official figures, a total of 234,000 households in the social tenant sector are overcrowded while 456,000 are under-occupied, meaning people have more than one extra spare room.
A further 1,159,000 households have more rooms than is standard for a family of their size.

The Work and Pensions department is now drawing up plans to slash housing benefit payments to those tenants who live in houses that are too big for them - meaning many will have to move into smaller properties.

If they could afford to pay the difference themselves to stay where they are it will raise questions about their eligibility for housing benefit in the first place.

The move is likely to prove controversial, since 'empty nest' couples who have lived in council houses for decades and seen their children vacate rooms when they leave home are among those who will be affected.

But Welfare Reform Minister Lord Freud told the Daily Mail: 'We cannot continue with this absurd situation where some of our poorest families have to live in overcrowded conditions while others are subsidised to live in big homes with plenty of spare room.
Lord Freud said the restrictions, which will come into effect from April 2013, will only apply to people of working age, sparing pensioners from the trauma of having to move from their homes.

The Government plans to work with local authorities to ensure that the housing stock is more 'sensibly utilised' and that entitlement to social housing reflects family size.

Specific detail is yet to be agreed, but the principle would be that working-age housing benefit claimants who are living in a property that is too large for their household size will have their benefit capped.
It is expected that overall weekly caps will be set at £250 for a one-bed property, £290 for a two-bed, £340 for a three-bed and £400 for a four-bed.

This means the highest amount people will be paid in housing benefit will be just over £20,000 a year, rather than the current highest level of £104,000. In total, 3.3million tenants- 70 per cent of housing benefit recipients- live in the social sector at an annual cost of more than £12billion.

In last month's emergency Budget, Chancellor George Osborne also announced that instead of people on housing benefit being able to claim rent of up to half of the local average, they will instead be only able to claim up to one third.

And unemployed people who claim JobSeeker's Allowance for 12 months will also see their housing benefit cut by ten per cent.
Campaigners claim the draconian nature of the benefit reforms will put 750,000 people at risk of losing their homes in London and the South East.]]> <![CDATA[maybe a case to quote and make councils do their job?]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2625 Fri, 23 Jul 2010 10:15:39 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2625 Guests cannot see links.Register now to see these links by clicking here

I know the council only had to pay out 17K BUT........ it will have cost them 10 times that much in working hours to defend their case as well Smile]]> Guests cannot see links.Register now to see these links by clicking here

I know the council only had to pay out 17K BUT........ it will have cost them 10 times that much in working hours to defend their case as well Smile]]> <![CDATA[Review into Special needs]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2603 Thu, 22 Jul 2010 18:41:51 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2603 Reported today in the telegraph

Ministers have launched a formal inquiry into children with special needs amid concerns that the numbers being diagnosed have shot up in recent years.
Sarah Teather, the new Children's Minister, last week ordered a Green Paper on youngsters with Special Educational Needs (SEN), amid concerns that the diagnosis may be being overused to explain simple bad behaviour – or even in order to get more money for schools.

It has now emerged that the number of children aged between two and four who were assessed as having special needs by nurseries has risen by 19 per cent in two years to 31,350.

Another 8,280 were diagnosed as needing a legal “statement” setting out the support they are entitled to, a rise of eight per cent since 2008.

The Green Paper ordered by Miss Teather into special educational needs and the lives of disabled children will be published in the autumn.

She is concerned that parents are being given insufficient advice and support following a diagnosis of SEN, with some beginning to question whether their child may have been inaccurately labelled as having special needs when in fact they may just be badly behaved.

Figures released by the Department for Education also show that twice as many male as female pupils are registered as having special needs, suggesting that naughtiness by over-exuberant little boys may be being misinterpreted as a syndrome such as Attention Deficit Hyperactivity Disorder.

There is no medical test for SEN, and diagnosis is performed by experts observing the child’s behaviour.

As well as the possibility of overzealous use of the term SEN by experts, there have been suggestions that diagnoses may be occurring for more cynical reasons, as schools and even parents seek to take advantage of the extra help given to children with special needs.

Schools have a “perverse incentive” to enlist as many children with SEN as possible, in order to improve their standing in league tables, while parents with an SEN child have more chance of getting them into the school of their choice.

Earlier this year, Philipa Stobbs, a senior Government adviser and expert on special needs, said children were being “over-labelled” when they might simply be falling behind in school.

She went on: “I don’t think it’s very helpful to infer that children behind in their learning have SEN.

“They are only working below the standards they should be achieving.

“Teachers need to sidestep the label and look at children’s progress in a more responsible way, using their age and prior attainment.”

Dr Gwynedd Lloyd, an education researcher at the University of Edinburgh, added: “You can’t do a blood test to check whether you’ve got ADHD – it’s diagnosed through a behavioural checklist.

“Getting out of your seat and running about is an example – half the Children in a school could qualify under that criterion.”

Ministers are said to believe that children who are genuinely in need of support, and their parents, should have more targeted help.

Announcing the Green Paper, Miss Teather said: "We want to make sure that the most vulnerable children get the best quality of support and care.

“Children with special educational needs and disabilities should have the same opportunities as their peers.

“The system needs to be more family friendly so that parents don’t feel they have to battle to get the support their child needs."]]> Reported today in the telegraph

Ministers have launched a formal inquiry into children with special needs amid concerns that the numbers being diagnosed have shot up in recent years.
Sarah Teather, the new Children's Minister, last week ordered a Green Paper on youngsters with Special Educational Needs (SEN), amid concerns that the diagnosis may be being overused to explain simple bad behaviour – or even in order to get more money for schools.

It has now emerged that the number of children aged between two and four who were assessed as having special needs by nurseries has risen by 19 per cent in two years to 31,350.

Another 8,280 were diagnosed as needing a legal “statement” setting out the support they are entitled to, a rise of eight per cent since 2008.

The Green Paper ordered by Miss Teather into special educational needs and the lives of disabled children will be published in the autumn.

She is concerned that parents are being given insufficient advice and support following a diagnosis of SEN, with some beginning to question whether their child may have been inaccurately labelled as having special needs when in fact they may just be badly behaved.

Figures released by the Department for Education also show that twice as many male as female pupils are registered as having special needs, suggesting that naughtiness by over-exuberant little boys may be being misinterpreted as a syndrome such as Attention Deficit Hyperactivity Disorder.

There is no medical test for SEN, and diagnosis is performed by experts observing the child’s behaviour.

As well as the possibility of overzealous use of the term SEN by experts, there have been suggestions that diagnoses may be occurring for more cynical reasons, as schools and even parents seek to take advantage of the extra help given to children with special needs.

Schools have a “perverse incentive” to enlist as many children with SEN as possible, in order to improve their standing in league tables, while parents with an SEN child have more chance of getting them into the school of their choice.

Earlier this year, Philipa Stobbs, a senior Government adviser and expert on special needs, said children were being “over-labelled” when they might simply be falling behind in school.

She went on: “I don’t think it’s very helpful to infer that children behind in their learning have SEN.

“They are only working below the standards they should be achieving.

“Teachers need to sidestep the label and look at children’s progress in a more responsible way, using their age and prior attainment.”

Dr Gwynedd Lloyd, an education researcher at the University of Edinburgh, added: “You can’t do a blood test to check whether you’ve got ADHD – it’s diagnosed through a behavioural checklist.

“Getting out of your seat and running about is an example – half the Children in a school could qualify under that criterion.”

Ministers are said to believe that children who are genuinely in need of support, and their parents, should have more targeted help.

Announcing the Green Paper, Miss Teather said: "We want to make sure that the most vulnerable children get the best quality of support and care.

“Children with special educational needs and disabilities should have the same opportunities as their peers.

“The system needs to be more family friendly so that parents don’t feel they have to battle to get the support their child needs."]]> <![CDATA[Major NHS changes what are you thoughts?]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2435 Mon, 12 Jul 2010 18:51:19 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2435
Hospitals are to be moved out of the NHS to create a "vibrant" industry of social enterprises under the proposals.

Also as expected,GPs are to take charge of much of the budget.

The move will lead to the abolition of all strategic health authorities and management bodies known as primary care trusts (PCT's)

The new structure will be held to account by an independent NHS board which would be free from political interference.

Meanwhile, responsibility for public health will be passed to local authorities.

In many ways, the plans outlined in a White Paper go further than expected. The coalition agreement had promised no top-down reorganisations.

But Health Secretary Andrew Lansley said he had decided to go further than first envisaged to rid the health service of bureaucracy.

He said the proposals would be challenging and turn the NHS "upside down" but in doing so help reduce management costs by nearly a half within four years.

He added: "The government's ambition is for health outcomes - and quality services - that are among the best in the world."

The GP paln had long been championed by Mr Lansley - and in recent months the British Medical Association had indicated it was willing to work with the goverment.

The plans mean GPs working in groups will be in charge of a vast collection of hospital, mental health and community services - although specialist services and dentistry will not fall under their remit.

Under the new system, the independent board will sit above as many as 500 consortiums of GPs to set standards and hold the groups to account.

Another key aspect of the changes involves giving patients more information and choice. To achieve this, a new body, HealthWatch, will be set up to compile data on performance, while GP boundaries will be abolished to allow patients to register with any doctor they want.

Mr Lansley also announced he expected all NHS trusts, which run hospitals and mental health units, to get foundation status by 2013.

He also said he would be relaxing the rules which cap the amount of income a trust can make outside the NHS, opening the door to them seeing more private patients.

He said this would allow them to innovate and widen the scope of what they did, but he also admitted it would mean those which were not financially viable could go under.

The government will now consult on its plans before rolling them out over the next three years.

What are your views?]]>
Hospitals are to be moved out of the NHS to create a "vibrant" industry of social enterprises under the proposals.

Also as expected,GPs are to take charge of much of the budget.

The move will lead to the abolition of all strategic health authorities and management bodies known as primary care trusts (PCT's)

The new structure will be held to account by an independent NHS board which would be free from political interference.

Meanwhile, responsibility for public health will be passed to local authorities.

In many ways, the plans outlined in a White Paper go further than expected. The coalition agreement had promised no top-down reorganisations.

But Health Secretary Andrew Lansley said he had decided to go further than first envisaged to rid the health service of bureaucracy.

He said the proposals would be challenging and turn the NHS "upside down" but in doing so help reduce management costs by nearly a half within four years.

He added: "The government's ambition is for health outcomes - and quality services - that are among the best in the world."

The GP paln had long been championed by Mr Lansley - and in recent months the British Medical Association had indicated it was willing to work with the goverment.

The plans mean GPs working in groups will be in charge of a vast collection of hospital, mental health and community services - although specialist services and dentistry will not fall under their remit.

Under the new system, the independent board will sit above as many as 500 consortiums of GPs to set standards and hold the groups to account.

Another key aspect of the changes involves giving patients more information and choice. To achieve this, a new body, HealthWatch, will be set up to compile data on performance, while GP boundaries will be abolished to allow patients to register with any doctor they want.

Mr Lansley also announced he expected all NHS trusts, which run hospitals and mental health units, to get foundation status by 2013.

He also said he would be relaxing the rules which cap the amount of income a trust can make outside the NHS, opening the door to them seeing more private patients.

He said this would allow them to innovate and widen the scope of what they did, but he also admitted it would mean those which were not financially viable could go under.

The government will now consult on its plans before rolling them out over the next three years.

What are your views?]]> <![CDATA[Families with disabled children struggling to pay bills]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2394 Sat, 10 Jul 2010 06:14:22 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2394
Contact a Family surveyed 1,113 people about how they were coping financially and found 23% went without heating and 14% missed meals to make ends meet.

The group said the slump has left many parents at "breaking point".

It is calling on the government to protect families in the forthcoming comprehensive spending review.

Srabani Sen, chief executive of Contact a Family, said: "Many families with disabled children are in financial dire straits.

"Everyone has been hit hard by the recession but families with disabled children were already having to cope with a harsh combination of extra living costs and the difficulty of holding down a job and caring.

"These financial pressures have been worsened by the economic slump and have left many at breaking point."

Researchers found that 23%, almost one in four, had to turn off their heating to save money and one in seven, 14%, are going without food.

Almost three-quarters, 73%, said they had to forego leisure activities and days out, while 68% are not taking any holidays.

Bryan Clover of the charity Elizabeth Finn Care warned the situation will get worse when the government switches the measure of inflation its uses to calculate benefit rises, from the Retail Price Index to the Consumer Price Index, which excludes housing costs.

Mr Clover said: "The impact of that is anything that they buy from now on will feel more expensive, its going to cost them more they will have less disposable income to use. Every single thing is going to be more expensive and that means hardship is really going to start biting."

The Minister for Disabled People, Maria Miller, said the coalition government was "committed to supporting the most vulnerable groups in society."

"We're radically reforming and simplifying the welfare system to make sure that families with disabled children get the help they need.

"Families with disabled children can face some of the toughest challenges when trying to get back into work. Our new work programme will help as it will provide a personalised package of support which can address issues around specialist childcare and respite care, regardless of the benefits they claim.

"In addition, from next year Disability Living Allowance will increase in line with the Consumer Price Index, meaning those families facing financial hardship will be better off than if we had stuck with the previous Government's plan to claw back last year's increase]]>
Contact a Family surveyed 1,113 people about how they were coping financially and found 23% went without heating and 14% missed meals to make ends meet.

The group said the slump has left many parents at "breaking point".

It is calling on the government to protect families in the forthcoming comprehensive spending review.

Srabani Sen, chief executive of Contact a Family, said: "Many families with disabled children are in financial dire straits.

"Everyone has been hit hard by the recession but families with disabled children were already having to cope with a harsh combination of extra living costs and the difficulty of holding down a job and caring.

"These financial pressures have been worsened by the economic slump and have left many at breaking point."

Researchers found that 23%, almost one in four, had to turn off their heating to save money and one in seven, 14%, are going without food.

Almost three-quarters, 73%, said they had to forego leisure activities and days out, while 68% are not taking any holidays.

Bryan Clover of the charity Elizabeth Finn Care warned the situation will get worse when the government switches the measure of inflation its uses to calculate benefit rises, from the Retail Price Index to the Consumer Price Index, which excludes housing costs.

Mr Clover said: "The impact of that is anything that they buy from now on will feel more expensive, its going to cost them more they will have less disposable income to use. Every single thing is going to be more expensive and that means hardship is really going to start biting."

The Minister for Disabled People, Maria Miller, said the coalition government was "committed to supporting the most vulnerable groups in society."

"We're radically reforming and simplifying the welfare system to make sure that families with disabled children get the help they need.

"Families with disabled children can face some of the toughest challenges when trying to get back into work. Our new work programme will help as it will provide a personalised package of support which can address issues around specialist childcare and respite care, regardless of the benefits they claim.

"In addition, from next year Disability Living Allowance will increase in line with the Consumer Price Index, meaning those families facing financial hardship will be better off than if we had stuck with the previous Government's plan to claw back last year's increase]]> <![CDATA[Marijuana use for Autism?]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2029 Mon, 14 Jun 2010 13:11:07 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=2029 ]]> ]]> <![CDATA[Babies born early and special needs]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=1959 Wed, 09 Jun 2010 20:13:22 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=1959
The news is based on research that found that babies delivered between 37 and 39 weeks had a higher chance of being later diagnosed with special educational needs (SEN) such as autism and dyslexia than babies delivered at the full term of 40 weeks. However, pregnant women should not be alarmed by this research or media reports as the risk of developing SEN was still relatively low in early babies, with delivery a week early linked to only around three extra cases per 1,000 births. Also, the study looked at SEN as a whole, meaning it did not report any specific rise in the risk of autism.

The findings have important implications for the timing of elective caesarean deliveries, with the researchers suggesting that, ideally, such deliveries should be postponed until 40 weeks when possible.



Where did the story come from?
The study was carried out by researchers from the Section of Public Health at the University of Glasgow, the Department of Obstetrics and Gynaecology at Cambridge University, the Information Services Division of NHS Scotland in Edinburgh and the Rosie Hospital, Cambridge. It was funded by NHS Health Scotland and published in the peer-reviewed journal Public Library of Science Medicine.

Both the Telegraph and the Daily Mail reported on this study. Their headlines and lead paragraphs, which emphasised the risk for babies born one week early, seem unnecessarily alarmist given the low increase in individual risk for babies born at 37-39 weeks. The Mail did report the lead author’s advice that women having planned caesareans should not panic, and that the chances of any one baby being affected by being delivered a week early are “very low”.

The Telegraph’s headline linking early births with autism is particularly misleading. The term ‘special educational needs’ is applied to several types of disorders in addition to autism, but the study did not look at what specific type of learning difficulties the children had. As such, the results do not support a claim that autism was higher among children delivered early compared with those born at 40 weeks. Autism is a neurodevelopmental disorder that many experts think also has a genetic basis.

What kind of research was this?

Most pregnancies last around 40 weeks. The researchers point out that infants delivered preterm (before 37 weeks) are known to be at increased risk of neurodevelopmental problems including impaired intelligence and school performance, with the risk being highest among the most premature. However, they say there is little information on whether an increased risk also exists among babies born slightly early (37-39 weeks). This is an important issue since these ‘early term’ births are on the increase, and many of these babies are delivered by planned (elective) caesareans.

This was a population-based, retrospective cohort study of 407,503 schoolchildren, which aimed to investigate the risk of special educational needs (SEN) at school age, according to gestational age at delivery. In this type of study, researchers examine the records of a group of people to find out how certain factors (in this case, the week of delivery) might affect their health. A retrospective study, in which researchers look back on past events, is considered less reliable than a prospective study, in which researchers select groups of people and then follow them over time, often for a period of several years. Neither type of study on its own can prove that one event (in this case an early term birth) can cause another (developing SEN), although they can indicate that an association exists between two factors.

In this study, researchers looked at the school census data on 407,503 school-aged children in 19 Scottish local authority areas, which recorded details of any SEN the children had. They linked these data with routine birth data on the same children, held in the Scottish Morbidity Record.


What did the research involve?

The researchers used data from the 2005 school census, provided by 19 out of 32 Scottish local authorities. These authorities covered a total population of 3.8 million, equivalent to 74% of the Scottish population. These authorities’ school census data, along with data provided by head teachers, provided complete information on 362,688 children aged up to 19, including details of any special educational needs (SEN) they had. Special educational needs are defined as learning disabilities such as dyslexia, ADHD and autism, or any physical disabilities that affect learning, such as hearing and vision problems.

These data were then linked to the children’s birth data from the Scottish Morbidity Record, which collects detailed information on all women discharged from Scottish maternity hospitals, including gestational age at birth. Certain cases were excluded because they could easily have biased results, for example, where birth weight was recorded as less than 400g or more than 5,000g, or delivery was before 24 weeks or after 43 weeks.

The two sets of data were then combined and analysed using standard statistical techniques in order to find out if associations existed between week of delivery and special educational needs at school age. In this analysis, the researchers also took account of and adjusted for other factors that might have influenced the results, such as maternal age and height, marital status and birth weight.


What were the basic results?

The study found that the earlier a baby was delivered, the greater the risk of them later having special educational needs. Here are the main findings:

•Overall, 17,784 (4.9%) children out of more than 360,000 with complete data were recorded as having SEN.
•Special educational needs were recorded among 1,565 (8.4%) of those born preterm (before 37 weeks) and 16,219 (4.7%) of those born at term (37-40 weeks).
•Babies born at 37-9 weeks were 16% more likely to have SEN, compared with children born at 40 weeks [adjusted odds ratio (OR) 1.16, 95% confidence interval (CI) 1.12–1.20].
•Babies born at 39 weeks were 9% more likely to have SEN than those born at 40 weeks (a statistically significant difference).
•Babies born at 33–36, 28-32 and 24-27 weeks were 1.53, 2.66 and 6.92 times more likely to have SEN as babies born at 40 weeks (also statistically significant).
•While the risk of developing SEN was higher among preterm babies (those born before 37 weeks), compared with early babies, there were many more babies born early than born preterm. This meant early births accounted for 5.5% of cases of SEN compared with preterm deliveries, which accounted for only 3.6% of cases.
•The risk of SEN at school age was higher in babies born after 41 weeks compared with babies born at 40 weeks.


How did the researchers interpret the results?

The researchers conclude that gestational age at delivery strongly affects a child’s risk of having SEN later in life and that the earlier the delivery before 40 weeks, the greater the risk. They believe the tendency for previous research to analyse preterm babies (before 37 weeks) against ‘term’ babies (37-40 weeks) has meant that the risk for early term babies has gone undetected.

Because early term deliveries are more common (in this study, nearly 40% of the children were delivered between 37 and 39 weeks), they are responsible for a greater number of cases of SEN than preterm deliveries. These findings, say the researchers, have important implications for the timing of elective delivery which, ideally, should be delayed until 40 weeks.


Conclusion

This study is the largest of its kind to look at gestational age across the whole spectrum and any associated risk of a child having special educational needs at school age. It has a number of strengths that increase the reliability of the associations seen:

•It used a national population register and, therefore, avoided any bias due to selection of the study group.
•The data it used were obtained from reputable, national sources.
• The included children were from all types of school and, therefore, represented the population as a whole.
•The researchers took into account a wide range of other factors that might have influenced children’s risk of having SEN. These included adjusting for birth weight, known to be a risk factor for neurodevelopmental problems.
Overall, these robust results have raised an important public health issue, since deliveries at 37-39 weeks seem to be on the rise and a proportion of these will be planned early deliveries, for example elective caesareans or induced labour.

However, this type of retrospective, observational study cannot prove that one factor causes another, i.e. it cannot confirm that an early delivery actually causes cases of SEN. Equally, though, the clear increase in risk with increasing prematurity, known as a ‘dose response relationship’, is evidence supporting a potential cause-and-effect relationship. Another potential limitation is that the average age of the children followed was 12 years, so although it took into account possible confounding factors at birth, the study could not take into account what happened to children in the years between birth and school age. This means that other factors, such as accidents or environmental problems, could have contributed to the risk of SEN. Also, the cause of an early birth may contribute to the risk, meaning that if a baby is already ill, it may need to be delivered early.

While the results suggest an association between earlier birth and greater risk of SEN, it also needs to be emphasised that, for individual mothers who deliver a baby between 37 and 39 weeks, the risk of neurodevelopmental disorder still remains very low. Among the babies in this study delivered at 40 weeks, the risk of SEN was equated to approximately 44 cases per 1,000 births. This means that the 9% increase in risk for babies born at 39 weeks would only amount to about an extra three babies in every thousand compared with those born at 40 weeks.

There are also many factors involved in deciding when an elective caesarean delivery should be undertaken, with some experts pointing out that waiting until 40 weeks also carries some risks]]>
The news is based on research that found that babies delivered between 37 and 39 weeks had a higher chance of being later diagnosed with special educational needs (SEN) such as autism and dyslexia than babies delivered at the full term of 40 weeks. However, pregnant women should not be alarmed by this research or media reports as the risk of developing SEN was still relatively low in early babies, with delivery a week early linked to only around three extra cases per 1,000 births. Also, the study looked at SEN as a whole, meaning it did not report any specific rise in the risk of autism.

The findings have important implications for the timing of elective caesarean deliveries, with the researchers suggesting that, ideally, such deliveries should be postponed until 40 weeks when possible.



Where did the story come from?
The study was carried out by researchers from the Section of Public Health at the University of Glasgow, the Department of Obstetrics and Gynaecology at Cambridge University, the Information Services Division of NHS Scotland in Edinburgh and the Rosie Hospital, Cambridge. It was funded by NHS Health Scotland and published in the peer-reviewed journal Public Library of Science Medicine.

Both the Telegraph and the Daily Mail reported on this study. Their headlines and lead paragraphs, which emphasised the risk for babies born one week early, seem unnecessarily alarmist given the low increase in individual risk for babies born at 37-39 weeks. The Mail did report the lead author’s advice that women having planned caesareans should not panic, and that the chances of any one baby being affected by being delivered a week early are “very low”.

The Telegraph’s headline linking early births with autism is particularly misleading. The term ‘special educational needs’ is applied to several types of disorders in addition to autism, but the study did not look at what specific type of learning difficulties the children had. As such, the results do not support a claim that autism was higher among children delivered early compared with those born at 40 weeks. Autism is a neurodevelopmental disorder that many experts think also has a genetic basis.

What kind of research was this?

Most pregnancies last around 40 weeks. The researchers point out that infants delivered preterm (before 37 weeks) are known to be at increased risk of neurodevelopmental problems including impaired intelligence and school performance, with the risk being highest among the most premature. However, they say there is little information on whether an increased risk also exists among babies born slightly early (37-39 weeks). This is an important issue since these ‘early term’ births are on the increase, and many of these babies are delivered by planned (elective) caesareans.

This was a population-based, retrospective cohort study of 407,503 schoolchildren, which aimed to investigate the risk of special educational needs (SEN) at school age, according to gestational age at delivery. In this type of study, researchers examine the records of a group of people to find out how certain factors (in this case, the week of delivery) might affect their health. A retrospective study, in which researchers look back on past events, is considered less reliable than a prospective study, in which researchers select groups of people and then follow them over time, often for a period of several years. Neither type of study on its own can prove that one event (in this case an early term birth) can cause another (developing SEN), although they can indicate that an association exists between two factors.

In this study, researchers looked at the school census data on 407,503 school-aged children in 19 Scottish local authority areas, which recorded details of any SEN the children had. They linked these data with routine birth data on the same children, held in the Scottish Morbidity Record.


What did the research involve?

The researchers used data from the 2005 school census, provided by 19 out of 32 Scottish local authorities. These authorities covered a total population of 3.8 million, equivalent to 74% of the Scottish population. These authorities’ school census data, along with data provided by head teachers, provided complete information on 362,688 children aged up to 19, including details of any special educational needs (SEN) they had. Special educational needs are defined as learning disabilities such as dyslexia, ADHD and autism, or any physical disabilities that affect learning, such as hearing and vision problems.

These data were then linked to the children’s birth data from the Scottish Morbidity Record, which collects detailed information on all women discharged from Scottish maternity hospitals, including gestational age at birth. Certain cases were excluded because they could easily have biased results, for example, where birth weight was recorded as less than 400g or more than 5,000g, or delivery was before 24 weeks or after 43 weeks.

The two sets of data were then combined and analysed using standard statistical techniques in order to find out if associations existed between week of delivery and special educational needs at school age. In this analysis, the researchers also took account of and adjusted for other factors that might have influenced the results, such as maternal age and height, marital status and birth weight.


What were the basic results?

The study found that the earlier a baby was delivered, the greater the risk of them later having special educational needs. Here are the main findings:

•Overall, 17,784 (4.9%) children out of more than 360,000 with complete data were recorded as having SEN.
•Special educational needs were recorded among 1,565 (8.4%) of those born preterm (before 37 weeks) and 16,219 (4.7%) of those born at term (37-40 weeks).
•Babies born at 37-9 weeks were 16% more likely to have SEN, compared with children born at 40 weeks [adjusted odds ratio (OR) 1.16, 95% confidence interval (CI) 1.12–1.20].
•Babies born at 39 weeks were 9% more likely to have SEN than those born at 40 weeks (a statistically significant difference).
•Babies born at 33–36, 28-32 and 24-27 weeks were 1.53, 2.66 and 6.92 times more likely to have SEN as babies born at 40 weeks (also statistically significant).
•While the risk of developing SEN was higher among preterm babies (those born before 37 weeks), compared with early babies, there were many more babies born early than born preterm. This meant early births accounted for 5.5% of cases of SEN compared with preterm deliveries, which accounted for only 3.6% of cases.
•The risk of SEN at school age was higher in babies born after 41 weeks compared with babies born at 40 weeks.


How did the researchers interpret the results?

The researchers conclude that gestational age at delivery strongly affects a child’s risk of having SEN later in life and that the earlier the delivery before 40 weeks, the greater the risk. They believe the tendency for previous research to analyse preterm babies (before 37 weeks) against ‘term’ babies (37-40 weeks) has meant that the risk for early term babies has gone undetected.

Because early term deliveries are more common (in this study, nearly 40% of the children were delivered between 37 and 39 weeks), they are responsible for a greater number of cases of SEN than preterm deliveries. These findings, say the researchers, have important implications for the timing of elective delivery which, ideally, should be delayed until 40 weeks.


Conclusion

This study is the largest of its kind to look at gestational age across the whole spectrum and any associated risk of a child having special educational needs at school age. It has a number of strengths that increase the reliability of the associations seen:

•It used a national population register and, therefore, avoided any bias due to selection of the study group.
•The data it used were obtained from reputable, national sources.
• The included children were from all types of school and, therefore, represented the population as a whole.
•The researchers took into account a wide range of other factors that might have influenced children’s risk of having SEN. These included adjusting for birth weight, known to be a risk factor for neurodevelopmental problems.
Overall, these robust results have raised an important public health issue, since deliveries at 37-39 weeks seem to be on the rise and a proportion of these will be planned early deliveries, for example elective caesareans or induced labour.

However, this type of retrospective, observational study cannot prove that one factor causes another, i.e. it cannot confirm that an early delivery actually causes cases of SEN. Equally, though, the clear increase in risk with increasing prematurity, known as a ‘dose response relationship’, is evidence supporting a potential cause-and-effect relationship. Another potential limitation is that the average age of the children followed was 12 years, so although it took into account possible confounding factors at birth, the study could not take into account what happened to children in the years between birth and school age. This means that other factors, such as accidents or environmental problems, could have contributed to the risk of SEN. Also, the cause of an early birth may contribute to the risk, meaning that if a baby is already ill, it may need to be delivered early.

While the results suggest an association between earlier birth and greater risk of SEN, it also needs to be emphasised that, for individual mothers who deliver a baby between 37 and 39 weeks, the risk of neurodevelopmental disorder still remains very low. Among the babies in this study delivered at 40 weeks, the risk of SEN was equated to approximately 44 cases per 1,000 births. This means that the 9% increase in risk for babies born at 39 weeks would only amount to about an extra three babies in every thousand compared with those born at 40 weeks.

There are also many factors involved in deciding when an elective caesarean delivery should be undertaken, with some experts pointing out that waiting until 40 weeks also carries some risks]]> <![CDATA[Study identifies 'many more' autism genes]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=1958 Wed, 09 Jun 2010 20:09:38 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=1958
Oxford researchers writing in the journal Nature hope now to establish whether genetic tests can help in making early diagnosis.

The team also say the discovery of new genes should help in the identification of drugs to combat symptoms.

It is thought that around half a million people in Britain suffer from autism to varying degrees.

Many are able to lead relatively normal lives while others require support throughout. Those with the condition find it difficult to socialise and communicate with others.

It has been known for some time that autism has a strong genetic influence - but up until now only eight or nine genes have been confirmed as playing a role.

Researchers using a new systematic analysis technique identified faults in many more regions of DNA in the 1,000 patients involved in the study. They say they might eventually find up to 300 genes which are involved.

Some of the newly identified genes play a role in developing connections between brain cells, while others are involved in sending signals within brain cells.

The study should help identify precisely which parts of the brain fail in patients.

According to one of the researchers involved, Professor Tony Monaco of Oxford University, this could help in the development of new drugs to ease some of the symptoms of autism, particularly in severely ill patients.

"We do hope to start working with pharmaceutical companies. One hope is that drugs that they might have already developed for other purposes could be used because they have a role in autism."

The researchers have identified these new regions of DNA in a fifth of the patients they have studied. They believe they will find many more genes in the remaining patients as they analyse their DNA with more sensitive methods.


The idea is to track these genes in their families and see if we can offer genetic counselling and what information we can offer the patient

The team hopes to catalogue all the genes involved in autism within the next two years.

The discovery of so many genes which all play a small part in the disease may help explain why the disorder manifests itself differently in individuals. Each person has a unique combination of faulty genes.

The study also raises the prospect of developing genetic tests to identify susceptibility to autism at an early stage. Researchers at Oxford and Newcastle are now applying for funding to carry out a pilot study on 1,000 newly diagnosed children to see if such a genetic test would be useful.

According to Professor Monaco: "The idea is to track these genes in their families and see if we can offer genetic counselling and what information we can offer the patient. If we can show the efficacy of that in the clinical care of the patients then we can push for it into genetic testing in the NHS."

"We'd hope that within two years we'd come up with clinical practice guidelines. So families can expect that we might be able to offer in the very near future some further DNA analysis of all patients."

But Dr Gina Gomez de la Cuesta of The National Autistic Society is more cautious.

She says: "This study furthers our understanding of genetic variation in autism, however there is a great deal more research to be done. Research into autism is constantly evolving but the exact causes are as yet still unknown.

"The difficulty of establishing gene involvement is compounded by the interaction of genes with the environment. Genetic testing for autism is still a long way off, given that autism is so complex.

"Whilst it is very important that research continues, it is also crucial that those living with the condition have access to appropriate advice and information, as the right support at the right time can make an enormous difference to people's lives."

Source- BBC NEWS]]>
Oxford researchers writing in the journal Nature hope now to establish whether genetic tests can help in making early diagnosis.

The team also say the discovery of new genes should help in the identification of drugs to combat symptoms.

It is thought that around half a million people in Britain suffer from autism to varying degrees.

Many are able to lead relatively normal lives while others require support throughout. Those with the condition find it difficult to socialise and communicate with others.

It has been known for some time that autism has a strong genetic influence - but up until now only eight or nine genes have been confirmed as playing a role.

Researchers using a new systematic analysis technique identified faults in many more regions of DNA in the 1,000 patients involved in the study. They say they might eventually find up to 300 genes which are involved.

Some of the newly identified genes play a role in developing connections between brain cells, while others are involved in sending signals within brain cells.

The study should help identify precisely which parts of the brain fail in patients.

According to one of the researchers involved, Professor Tony Monaco of Oxford University, this could help in the development of new drugs to ease some of the symptoms of autism, particularly in severely ill patients.

"We do hope to start working with pharmaceutical companies. One hope is that drugs that they might have already developed for other purposes could be used because they have a role in autism."

The researchers have identified these new regions of DNA in a fifth of the patients they have studied. They believe they will find many more genes in the remaining patients as they analyse their DNA with more sensitive methods.


The idea is to track these genes in their families and see if we can offer genetic counselling and what information we can offer the patient

The team hopes to catalogue all the genes involved in autism within the next two years.

The discovery of so many genes which all play a small part in the disease may help explain why the disorder manifests itself differently in individuals. Each person has a unique combination of faulty genes.

The study also raises the prospect of developing genetic tests to identify susceptibility to autism at an early stage. Researchers at Oxford and Newcastle are now applying for funding to carry out a pilot study on 1,000 newly diagnosed children to see if such a genetic test would be useful.

According to Professor Monaco: "The idea is to track these genes in their families and see if we can offer genetic counselling and what information we can offer the patient. If we can show the efficacy of that in the clinical care of the patients then we can push for it into genetic testing in the NHS."

"We'd hope that within two years we'd come up with clinical practice guidelines. So families can expect that we might be able to offer in the very near future some further DNA analysis of all patients."

But Dr Gina Gomez de la Cuesta of The National Autistic Society is more cautious.

She says: "This study furthers our understanding of genetic variation in autism, however there is a great deal more research to be done. Research into autism is constantly evolving but the exact causes are as yet still unknown.

"The difficulty of establishing gene involvement is compounded by the interaction of genes with the environment. Genetic testing for autism is still a long way off, given that autism is so complex.

"Whilst it is very important that research continues, it is also crucial that those living with the condition have access to appropriate advice and information, as the right support at the right time can make an enormous difference to people's lives."

Source- BBC NEWS]]> <![CDATA[Lets Talk Autism - Prime Ministerial Debate]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=1487 Wed, 28 Apr 2010 07:57:48 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=1487
The final Prime Ministerial debate takes place on Thursday night. The final debate is about the economy. It is estimated that there are at least half a million children and adults who have a diagnosis of autism. There are many more who have the condition without the diagnosis. There could be as many as 6 million families in the UK alone who are living with autism.

Autism-In-Mind and Asperger Syndrome Action by Parents want the leaders to talk about autism on Thursday night and we need your help now. We want you to submit the following question onto the BBC ‘Election Question’ form. The question is wrapped around the economy and how the money that is being spent on autism every year is being spent. It is important that we all ask the same question. We want 1000,s of people to ask this question by Thursday Night and if we can achieve this then maybe someone will listen to us and will talk about autism.

Question to submit to the BBC

A recent study by researchers at King’s College London estimated that autism costs the UK economy around £28.2 billion per year, and yet thousands of autistic/Asperger syndrome children and adults do not meet the criteria for any provision or services. Autism/Asperger syndrome requires services from the cradle to the grave. The only money attached to the newly published Autism Strategy will be half a million pounds for increasing awareness and understanding of autism among frontline professionals with nothing for service provision.

In the first debate there seemed to be recognition from all three parties that there is a huge social care agenda to be addressed in the future, but will it include autistic/Asperger syndrome and disabled people and what guarantee can you give that it will include them? How are you going to make sure that EVERY autistic child and adult is not left until crisis point before they are given the provision that they need? Many of us would like to know how much of the £28.2 billion is being spent on crisis management.

Here is where you post the question – you do have to give your name and where you live. You do not have to add a telephone number if you do not want to. If you do want to add this number 07960875526 this phone will be deactivated after Thursday night.

Guests cannot see links.Register now to see these links by clicking here


Here are some facts and figures produced about Autism last year by the National Audit Office – This might help you to understand how important it is for the Leaders to ‘Talk about Autism’ on Thursday night.

It's my life

Guests cannot see links.Register now to see these links by clicking here

BY THE WAY - THIS NEEDS TO BE COMPLETED BY THURSDAY EVENING !!]]>
The final Prime Ministerial debate takes place on Thursday night. The final debate is about the economy. It is estimated that there are at least half a million children and adults who have a diagnosis of autism. There are many more who have the condition without the diagnosis. There could be as many as 6 million families in the UK alone who are living with autism.

Autism-In-Mind and Asperger Syndrome Action by Parents want the leaders to talk about autism on Thursday night and we need your help now. We want you to submit the following question onto the BBC ‘Election Question’ form. The question is wrapped around the economy and how the money that is being spent on autism every year is being spent. It is important that we all ask the same question. We want 1000,s of people to ask this question by Thursday Night and if we can achieve this then maybe someone will listen to us and will talk about autism.

Question to submit to the BBC

A recent study by researchers at King’s College London estimated that autism costs the UK economy around £28.2 billion per year, and yet thousands of autistic/Asperger syndrome children and adults do not meet the criteria for any provision or services. Autism/Asperger syndrome requires services from the cradle to the grave. The only money attached to the newly published Autism Strategy will be half a million pounds for increasing awareness and understanding of autism among frontline professionals with nothing for service provision.

In the first debate there seemed to be recognition from all three parties that there is a huge social care agenda to be addressed in the future, but will it include autistic/Asperger syndrome and disabled people and what guarantee can you give that it will include them? How are you going to make sure that EVERY autistic child and adult is not left until crisis point before they are given the provision that they need? Many of us would like to know how much of the £28.2 billion is being spent on crisis management.

Here is where you post the question – you do have to give your name and where you live. You do not have to add a telephone number if you do not want to. If you do want to add this number 07960875526 this phone will be deactivated after Thursday night.

Guests cannot see links.Register now to see these links by clicking here


Here are some facts and figures produced about Autism last year by the National Audit Office – This might help you to understand how important it is for the Leaders to ‘Talk about Autism’ on Thursday night.

It's my life

Guests cannot see links.Register now to see these links by clicking here

BY THE WAY - THIS NEEDS TO BE COMPLETED BY THURSDAY EVENING !!]]> <![CDATA[David Cameron discusses special needs]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=1486 Wed, 28 Apr 2010 06:26:40 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=1486
.jpg  davidcameron.jpg (Size: 20.91 KB / Downloads: 82) David Cameron has called for the families of disabled children to be spared "the bureaucratic pain" of form-filling and assessments to get the help they need.

Life for the parents of such young people is already "complicated enough without having to jump through hundreds of government hoops", the Conservative leader says.
He says that a future Tory government would introduce an Austrian-style system of one-off assessments by "crack teams" of medical experts to determine what assistance families need.

Cameron,told the Guardian last year about how his contact with the health service, special schools, social and other services because of Ivan's condition had helped to shape his political views.

David clearly showed a hint of frustration at dealing with bureaucracy. "After the initial shock of diagnosis you're plunged into a world of bureaucratic pain. Having your child assessed and getting the help you're entitled to means answering the same questions again and again, being buried under snowdrifts of forms, spending hours on hold in the phone queue. I am determined to make life simpler for parents," he says.

He says he and his wife Samantha were not only "deeply shocked, worried and upset" when told of Ivan's condition, but also "incredibly confused". He adds: "It feels like you're on the beginning of a journey you never planned to take, without a map or a clue which direction to go in."

He also repeats a pledge to halt the closure of special schools and make it easier for parents to get the education they need. "So many parents get stuck on a merry-go-round of assessments, appeals and tribunals to get a statement of special needs and the extra help their child needs.

"There is a structural reason for that. The people that decide who gets specialist education – local education authorities – are the ones who pay for it. We're seriously looking at how we can resolve that conflict of interest, so parents don't have to enter such a huge battle for special education."]]>
.jpg  davidcameron.jpg (Size: 20.91 KB / Downloads: 82) David Cameron has called for the families of disabled children to be spared "the bureaucratic pain" of form-filling and assessments to get the help they need.

Life for the parents of such young people is already "complicated enough without having to jump through hundreds of government hoops", the Conservative leader says.
He says that a future Tory government would introduce an Austrian-style system of one-off assessments by "crack teams" of medical experts to determine what assistance families need.

Cameron,told the Guardian last year about how his contact with the health service, special schools, social and other services because of Ivan's condition had helped to shape his political views.

David clearly showed a hint of frustration at dealing with bureaucracy. "After the initial shock of diagnosis you're plunged into a world of bureaucratic pain. Having your child assessed and getting the help you're entitled to means answering the same questions again and again, being buried under snowdrifts of forms, spending hours on hold in the phone queue. I am determined to make life simpler for parents," he says.

He says he and his wife Samantha were not only "deeply shocked, worried and upset" when told of Ivan's condition, but also "incredibly confused". He adds: "It feels like you're on the beginning of a journey you never planned to take, without a map or a clue which direction to go in."

He also repeats a pledge to halt the closure of special schools and make it easier for parents to get the education they need. "So many parents get stuck on a merry-go-round of assessments, appeals and tribunals to get a statement of special needs and the extra help their child needs.

"There is a structural reason for that. The people that decide who gets specialist education – local education authorities – are the ones who pay for it. We're seriously looking at how we can resolve that conflict of interest, so parents don't have to enter such a huge battle for special education."]]> <![CDATA[young autistic & stagestruck]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=1208 Wed, 07 Apr 2010 20:15:19 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=1208 <![CDATA[Temple Grandin Interview]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=853 Mon, 01 Mar 2010 18:00:07 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=853

Guests cannot see links.Register now to see these links by clicking here


Never heard of this lady before but think I would like to see the film.]]>

Guests cannot see links.Register now to see these links by clicking here


Never heard of this lady before but think I would like to see the film.]]> <![CDATA[Doctor cuts out childs bladder thinking it was a hernia]]> http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=805 Mon, 22 Feb 2010 17:34:53 +0000 http://www.parentsofdisabledchildren.co.uk/showthread.php?tid=805 Consultant paediatric surgeon Dr Pierina Kapur, 43, failed to recognise the hernia when she carried out the operation on the seven-week-old baby girl, it was alleged.
Instead she removed almost all of the youngster's bladder by mistake then sewed up the remainder of it not realising what she had done.
The bungle emerged when the baby was taken into surgery with acute kidney failure and other doctors discovered both ureters - ducts by which urine passes from the kidney to the bladder - had been damaged.

The left hernia, protrubing through the muscle wall, was still intact, with the ovary still inside it.

The child, known only as baby A, was unable to pass urine for over 35 hours and will now require a catheter for the rest of her life with continued medical treatment for 'irreparable damage'.
Today at a medical tribunal in Manchester, Dr Kapur, who was employed by the Central Manchester and Manchester Children's NHS Trust admitted bungling the operation on October 2 2008.
But she denied that she had failed to take adequate steps after the operation to arrange for an ultrasound and to get blood tests to check the baby's kidney function.
She also denies that her fitness to practise had been 'impaired because of her misconduct'.
The tribunal heard that the left inguinal hernia operation - in the area around the groin - was considered 'difficult' as a large hernial sac needed to be removed with the baby's left ovary embedded in it.
Following the procedure, and subsequent rectal biopsy, at Royal Manchester Children's Hospital in Pendlebury, the child was transferred back to the ward.

But her mother became concerned over the course of evening as baby A had developed a facial rash, temperature and had not passed urine since before the operation.
Fluids were prescribed, but the baby was not reviewed again until 9am the following morning when further fluids were administered to try and ease the constipation.
The panel, sitting in Manchester, heard that the locum consultant surgeon was called to assess the child at 3pm that afternoon with Dr Kapur and a decision was made to insert a catheter.
Counsel for the GMC, Ms Catherine Cundy told the hearing, 'Miss Kapur appears to have left the hospital at this point.
'It is the GMC case that despite knowing that baby's symptoms and how difficult surgery had been, she did not take any or any adequate steps to arrange for blood tests or an ultrasound to be taken.'
By 8.30pm on October 2 2008, baby A had not passed urine for 35 hours and her rash had spread. She was re-examined and blood tests revealed she had 'dangerously high levels of potassium' in her blood.
An ultrasound could not detect a full bladder and the baby was transferred to paediatric intensive care at midnight.
The panel heard that she was taken into surgery with acute renal failure and exploration of her bladder revealed that 90 per cent of it had been removed, and that both ureters had been damaged.
The left hernia was still intact, with the ovary still inside it.
Ms Cundy added: 'You will hear from the baby's mother that she has had to undergo further operations and in-patient stays to try and deal with the aftermath of her original surgery and the repeated infections to which she is susceptible.
'She will need to undergo further surgery and will remain dependant on catheterisation for the rest of her life.
'You will hear from our expert witness that Miss Kapur failed to recognise the anatomy or stop and take a step back from what she had found therefore causing serious and irreparable damage to the bladder.
'He is critical of her failure to take appropriate steps to investigate the baby's post operative symptoms when she knew surgery had been unexpectedly difficult and lengthy.'

Dr Ian Hennessey who assisted Dr Kapur in the operation told the panel that a straight-forward operation to remove a hernia from a female infant would usually take 15 minutes, but this operation had taken 'just over an hour' because of the difficulties.

Dr Kapur of Greater Manchester admitted that she had failed to recognise the anatomy on the baby's left side, mistook the bladder for the left inguinal hernial sac, opened the bladder, dissected 90 per cent of it, obstructed the right ureter, failed to identify and operate on the left hernial sac with the left ovary embedded in it, caused damage to both urethers and severed the left ureter from the bladder.
She also admitted that she was aware of baby A's post-operative difficulties and accepted this was inadequate and substandard.]]> Consultant paediatric surgeon Dr Pierina Kapur, 43, failed to recognise the hernia when she carried out the operation on the seven-week-old baby girl, it was alleged.
Instead she removed almost all of the youngster's bladder by mistake then sewed up the remainder of it not realising what she had done.
The bungle emerged when the baby was taken into surgery with acute kidney failure and other doctors discovered both ureters - ducts by which urine passes from the kidney to the bladder - had been damaged.

The left hernia, protrubing through the muscle wall, was still intact, with the ovary still inside it.

The child, known only as baby A, was unable to pass urine for over 35 hours and will now require a catheter for the rest of her life with continued medical treatment for 'irreparable damage'.
Today at a medical tribunal in Manchester, Dr Kapur, who was employed by the Central Manchester and Manchester Children's NHS Trust admitted bungling the operation on October 2 2008.
But she denied that she had failed to take adequate steps after the operation to arrange for an ultrasound and to get blood tests to check the baby's kidney function.
She also denies that her fitness to practise had been 'impaired because of her misconduct'.
The tribunal heard that the left inguinal hernia operation - in the area around the groin - was considered 'difficult' as a large hernial sac needed to be removed with the baby's left ovary embedded in it.
Following the procedure, and subsequent rectal biopsy, at Royal Manchester Children's Hospital in Pendlebury, the child was transferred back to the ward.

But her mother became concerned over the course of evening as baby A had developed a facial rash, temperature and had not passed urine since before the operation.
Fluids were prescribed, but the baby was not reviewed again until 9am the following morning when further fluids were administered to try and ease the constipation.
The panel, sitting in Manchester, heard that the locum consultant surgeon was called to assess the child at 3pm that afternoon with Dr Kapur and a decision was made to insert a catheter.
Counsel for the GMC, Ms Catherine Cundy told the hearing, 'Miss Kapur appears to have left the hospital at this point.
'It is the GMC case that despite knowing that baby's symptoms and how difficult surgery had been, she did not take any or any adequate steps to arrange for blood tests or an ultrasound to be taken.'
By 8.30pm on October 2 2008, baby A had not passed urine for 35 hours and her rash had spread. She was re-examined and blood tests revealed she had 'dangerously high levels of potassium' in her blood.
An ultrasound could not detect a full bladder and the baby was transferred to paediatric intensive care at midnight.
The panel heard that she was taken into surgery with acute renal failure and exploration of her bladder revealed that 90 per cent of it had been removed, and that both ureters had been damaged.
The left hernia was still intact, with the ovary still inside it.
Ms Cundy added: 'You will hear from the baby's mother that she has had to undergo further operations and in-patient stays to try and deal with the aftermath of her original surgery and the repeated infections to which she is susceptible.
'She will need to undergo further surgery and will remain dependant on catheterisation for the rest of her life.
'You will hear from our expert witness that Miss Kapur failed to recognise the anatomy or stop and take a step back from what she had found therefore causing serious and irreparable damage to the bladder.
'He is critical of her failure to take appropriate steps to investigate the baby's post operative symptoms when she knew surgery had been unexpectedly difficult and lengthy.'

Dr Ian Hennessey who assisted Dr Kapur in the operation told the panel that a straight-forward operation to remove a hernia from a female infant would usually take 15 minutes, but this operation had taken 'just over an hour' because of the difficulties.

Dr Kapur of Greater Manchester admitted that she had failed to recognise the anatomy on the baby's left side, mistook the bladder for the left inguinal hernial sac, opened the bladder, dissected 90 per cent of it, obstructed the right ureter, failed to identify and operate on the left hernial sac with the left ovary embedded in it, caused damage to both urethers and severed the left ureter from the bladder.
She also admitted that she was aware of baby A's post-operative difficulties and accepted this was inadequate and substandard.]]>