Why aren't there more places like this?
The death of David Cameron's son has turned the spotlight on a very special group of schools
Caroline Roberts The Guardian,
The topic is "space", and George is making a giant alien flower out of shiny, coloured paper. A teaching assistant helps him to spread the glue with a spatula. Jacob is watching intently and with evident delight as a handful of coloured sequins trickles through his fingers. Other pupils are squeezing lumps of green playdough.
This is not a primary school classroom. The class 3 pupils at St Margaret's school in Tadworth, Surrey, are teenagers with profound and multiple learning difficulties (PMLD) as well as complex medical problems. Like all of the 33 residential and 11 day pupils at the school, which is part of the Children's Trust charity, they are operating at a cognitive level similar to a child of between three and 12 months. Nevertheless, they are achieving. At the end of each lesson, teachers carefully record their progress, such as using their hands, focusing on an object or indicating a preference with a facial expression or gaze.
Full potential
The recent death of Conservative leader David Cameron's profoundly disabled son, Ivan, has thrown a spotlight on the needs and rights of children like these pupils. Cameron spoke movingly of his "wonderfully special" son, and it is clear that other parents of children with PMLD also feel their sons and daughters are special and just as deserving of the opportunity to develop to their full potential as any other child. And this is what St Margaret's aims to do. "It's about giving these children the skills to live life to the max, and be as much in control of their lives as they possibly can," says the head, Jan Cunningham.
The national curriculum does not encompass children operating at such a low cognitive level so, 11 years ago, St Margaret's set about creating its own curriculum. It takes a holistic approach and provides a 24-hour programme that integrates learning and therapy, and is tailored to each individual pupil. There is also a doctor and nursing team. The school was judged outstanding by a recent Ofsted inspection and its curriculum, which was published in 2006, is now being used in over 40 other special schools in the UK and abroad.
The school has soft play areas and hi-tech vibro-acoustic and multi-sensory rooms, which help to develop pupils' ability to interact with the world around them. One room has a screen that produces coloured patterns in response to sounds made by the children, and a dark room helps to develop eye-tracking as they follow coloured lights. "Many of the pupils have limited vision and movement, and we're constantly trying to find ways to address that, and help them to develop their self-awareness and awareness of others," says teacher Ros Howe. The children also enjoy hydrotherapy in the swimming pool, and many off-site activities such as horse-riding.
Due to medical advances that have prolonged life expectancy for some conditions, the number of children with PMLD is increasing. School census figures suggest there are currently around 9,000 in the UK. Not all are as fortunate as those at St Margaret's. For the majority, the only education option is a special school catering for a much wider range of abilities. Staff might only encounter small numbers of pupils with PMLD and so lack expertise in educating them.
The Camerons have spoken about how happy they were with the education Ivan received at his school, Jack Tizard in Hammersmith, west London, where he was taught in a small group of children with similar needs. However, the headteacher at Jack Tizard, Cathy Welsh, is clear about the challenges many special schools face. "In this country, initial teacher training doesn't really address PMLD, so we have to coach teachers ourselves," she says.
"In South Africa and Australia, PMLD training is the norm and we used to be able to take teachers from these countries without any problem. Now they have to requalify here, which takes time and money. Addressing this problem at source by providing initial teacher training pathways in severe learning difficulties and PMLD would really help us."
Mary Greenway had problems finding a school with the right expertise for her profoundly disabled child. Eventually, Harry was allotted a place at St Margaret's, but sadly died after two years at the school. However, Greenway was so impressed with the education he received there that she continues to support the school as chair of governors.
"The local special schools didn't have the experience to meet Harry's needs and it was only when outreach nurses started doing therapy with him that we realised that there could be some achievement, and we fought for a place at St Margaret's," she says. "He used to be in pain and would cry a lot, but the doctors there had the experience to sort out his medication so he was more comfortable and started to be able to access the curriculum. He became much more tactile - it was a tiny step, but it did improve his quality of life immeasurably. We need more places like St Margaret's. It has a positive, 'can do' approach."
At St Margaret's, the fabric of the school is provided by the Children's Trust but, as with other special schools, funding of places is down to the education authority, primary care trust or social services. Sometimes it is a combination of all three, which is complex and can lead to delays. Welsh believes there needs to be a more coherent system. "The high-quality education to which our pupils are entitled is very staff-intensive and requires continuous collaboration between lots of professionals. When children's services and primary care trusts work in partnership and put in the resources, children with PMLD really benefit," she says.
Educating profoundly disabled children is expensive. As well as one-to-one attention, they need equipment such as wheelchairs, standing frames and spinal jackets, which have to be changed as they grow. Cunningham estimates all this costs at least £165,000 a year.
Money well spent
But for parents, it is money well spent. Jake Foreman's daughter, Hattie, has the neurological disorder Rett syndrome, in which St Margaret's has particular expertise. "People with no experience of children with profound disabilities may wonder if it's all worth it," he says. "But, from a parent's point of view, anything that can be done to enhance her happiness and skills is very important.
"We couldn't provide all the things she does, such as the riding. She has a tremendous rapport with animals, responds to swimming and music, and all these things have been taken up by the school. She has really developed in some areas, such as being able to maintain eye contact."
Luckily for Hattie, who is now 15, St Margaret's is developing a service for students to stay on up to the age of 25. This means she can continue to benefit as she moves into adulthood. "The sad thing for most people with PMLD is that, when they get to 19, the funding stops and they get put into residential homes, which rarely embrace education," says Cunningham.
She believes there is an urgent need for more funding to combine education with wrap-around care. "The government needs to get behind residential special schools. You can't put these pupils in a mainstream setting without medical facilities. Residential is often the best way forward for children with PMLD."
Caroline Roberts The Guardian,
The topic is "space", and George is making a giant alien flower out of shiny, coloured paper. A teaching assistant helps him to spread the glue with a spatula. Jacob is watching intently and with evident delight as a handful of coloured sequins trickles through his fingers. Other pupils are squeezing lumps of green playdough.
This is not a primary school classroom. The class 3 pupils at St Margaret's school in Tadworth, Surrey, are teenagers with profound and multiple learning difficulties (PMLD) as well as complex medical problems. Like all of the 33 residential and 11 day pupils at the school, which is part of the Children's Trust charity, they are operating at a cognitive level similar to a child of between three and 12 months. Nevertheless, they are achieving. At the end of each lesson, teachers carefully record their progress, such as using their hands, focusing on an object or indicating a preference with a facial expression or gaze.
Full potential
The recent death of Conservative leader David Cameron's profoundly disabled son, Ivan, has thrown a spotlight on the needs and rights of children like these pupils. Cameron spoke movingly of his "wonderfully special" son, and it is clear that other parents of children with PMLD also feel their sons and daughters are special and just as deserving of the opportunity to develop to their full potential as any other child. And this is what St Margaret's aims to do. "It's about giving these children the skills to live life to the max, and be as much in control of their lives as they possibly can," says the head, Jan Cunningham.
The national curriculum does not encompass children operating at such a low cognitive level so, 11 years ago, St Margaret's set about creating its own curriculum. It takes a holistic approach and provides a 24-hour programme that integrates learning and therapy, and is tailored to each individual pupil. There is also a doctor and nursing team. The school was judged outstanding by a recent Ofsted inspection and its curriculum, which was published in 2006, is now being used in over 40 other special schools in the UK and abroad.
The school has soft play areas and hi-tech vibro-acoustic and multi-sensory rooms, which help to develop pupils' ability to interact with the world around them. One room has a screen that produces coloured patterns in response to sounds made by the children, and a dark room helps to develop eye-tracking as they follow coloured lights. "Many of the pupils have limited vision and movement, and we're constantly trying to find ways to address that, and help them to develop their self-awareness and awareness of others," says teacher Ros Howe. The children also enjoy hydrotherapy in the swimming pool, and many off-site activities such as horse-riding.
Due to medical advances that have prolonged life expectancy for some conditions, the number of children with PMLD is increasing. School census figures suggest there are currently around 9,000 in the UK. Not all are as fortunate as those at St Margaret's. For the majority, the only education option is a special school catering for a much wider range of abilities. Staff might only encounter small numbers of pupils with PMLD and so lack expertise in educating them.
The Camerons have spoken about how happy they were with the education Ivan received at his school, Jack Tizard in Hammersmith, west London, where he was taught in a small group of children with similar needs. However, the headteacher at Jack Tizard, Cathy Welsh, is clear about the challenges many special schools face. "In this country, initial teacher training doesn't really address PMLD, so we have to coach teachers ourselves," she says.
"In South Africa and Australia, PMLD training is the norm and we used to be able to take teachers from these countries without any problem. Now they have to requalify here, which takes time and money. Addressing this problem at source by providing initial teacher training pathways in severe learning difficulties and PMLD would really help us."
Mary Greenway had problems finding a school with the right expertise for her profoundly disabled child. Eventually, Harry was allotted a place at St Margaret's, but sadly died after two years at the school. However, Greenway was so impressed with the education he received there that she continues to support the school as chair of governors.
"The local special schools didn't have the experience to meet Harry's needs and it was only when outreach nurses started doing therapy with him that we realised that there could be some achievement, and we fought for a place at St Margaret's," she says. "He used to be in pain and would cry a lot, but the doctors there had the experience to sort out his medication so he was more comfortable and started to be able to access the curriculum. He became much more tactile - it was a tiny step, but it did improve his quality of life immeasurably. We need more places like St Margaret's. It has a positive, 'can do' approach."
At St Margaret's, the fabric of the school is provided by the Children's Trust but, as with other special schools, funding of places is down to the education authority, primary care trust or social services. Sometimes it is a combination of all three, which is complex and can lead to delays. Welsh believes there needs to be a more coherent system. "The high-quality education to which our pupils are entitled is very staff-intensive and requires continuous collaboration between lots of professionals. When children's services and primary care trusts work in partnership and put in the resources, children with PMLD really benefit," she says.
Educating profoundly disabled children is expensive. As well as one-to-one attention, they need equipment such as wheelchairs, standing frames and spinal jackets, which have to be changed as they grow. Cunningham estimates all this costs at least £165,000 a year.
Money well spent
But for parents, it is money well spent. Jake Foreman's daughter, Hattie, has the neurological disorder Rett syndrome, in which St Margaret's has particular expertise. "People with no experience of children with profound disabilities may wonder if it's all worth it," he says. "But, from a parent's point of view, anything that can be done to enhance her happiness and skills is very important.
"We couldn't provide all the things she does, such as the riding. She has a tremendous rapport with animals, responds to swimming and music, and all these things have been taken up by the school. She has really developed in some areas, such as being able to maintain eye contact."
Luckily for Hattie, who is now 15, St Margaret's is developing a service for students to stay on up to the age of 25. This means she can continue to benefit as she moves into adulthood. "The sad thing for most people with PMLD is that, when they get to 19, the funding stops and they get put into residential homes, which rarely embrace education," says Cunningham.
She believes there is an urgent need for more funding to combine education with wrap-around care. "The government needs to get behind residential special schools. You can't put these pupils in a mainstream setting without medical facilities. Residential is often the best way forward for children with PMLD."
Labels: Access, David Cameron, Down syndrome, learning difficulties, Special schools
07 March 2009
Mobility matters - The Northern Echo
The recent death of Ivan Cameron from cerebral palsy has raised the profile of this devastating condition.
Health Editor Barry Nelson visits a charity providing vital support for North-East children.
IN a mobile classroom on the edge of a County Durham town something remarkable is happening.
Kneeling on a floor pad and with arms outstretched, a teacher trained at the world-famous Peto Institute, in Budapest, is working with a severely disabled child. By gently guiding the child’s movements, encouraging him to stretch, reach out and grasp toys, the Hungarian “conductor” is able to gradually increase his mobility and flexibility.
Throughout the hour-long session, the conductor also talks and sings to the child, who responds with gurgles and cries of pleasure. But it is not all fun. From time to time the child grimaces as he struggles to complete a movement that an able-bodied youngster would find child’s play.
But for a youngster with cerebral palsy, just grasping a toy rattle and lifting it into the air takes a huge, unimaginable effort.
Every day children from all over the North-East are brought by their parents to the Heel & Toe charity on the outskirts of Spennymoor, so conductive education therapist Zsuzsanna Luteran can work her magic. Remarkably, the charity offers such therapy free of charge to families in the North-East who need it. With access to NHS physiotherapists strictly rationed, this has proved to be a lifeline for desperate families. In every case the 34 children who have regular conductive education sessions at Heel & Toe have benefited and made steady progress.
Now the charity is urgently appealing to the public to help them expand their services.
Zsuzsanna is an exponent of conductive education, a now internationally famous method of improving motor skills of children with cerebral palsy, spina bifida and other motor disorders. Developed at the Peto Institute more than 40 years ago, conductive education is now widely used by therapists across the world.
The institute’s website explains that conductive education is not a cure but “a method of exercises and education… performed intensively, five hours per day, five days per week, in small groups”.
ZSUZSANNA is delighted that families who use Heel & Toe keep coming back for more. “I am very happy that all of the parents of the children I teach have kept on coming back since October,” she says.
In every child she works with, Zsuzsanna says there has been progress. “I have seen positive changes in all of them, especially the younger ones,” she says.
Zsuzsanna says one of her clients, a ten-month-old baby, was like “a big piece of stone” when he was first brought to the centre. “At first he was unable to move, but now he can roll, creep and even sit up. His mum said she never expected him to do that.”
Each lesson is a mixture of group exercises and intensive, one-to-one sessions. “People sometimes think conductors are just physiotherapists, but it is much more,” says Zsuzsanna. “It covers every aspect of the person. It is everything – moving, speaking, eating, building up confidence – and they have to do this at home as well.”
A regular at Heel & Toe is twoyear- old Max, whose mother Leeann Harker comes from Crook. The very fact Max is alive is something of a miracle. “I was supposed to have twins in March,” says Leeann, “but they came very prematurely in November.
Michael died after four days and Max suffered from a massive bleed.”
After 100 days in hospital and a series of operations, she was able to bring Max home. Diagnosed with a severe form of cerebral palsy, experts warned her that he would probably be in a vegetative state. But while Max finds it impossible to perform most of the tasks a “normal” two-year-old could do, Leeann says he is making progress and can still communicate.
“He knows what he wants and he knows how to tell me. If he is hungry he sticks his tongue out. He can be very cheeky,” she says.
The conductive education sessions have been “absolutely fantastic”, according to Leeann. “He used to make little fists and hold them tight. He can now open his hands more easily.
He also tries to creep now and he can almost sit up on his own. We would be lost without this place. I just hope they raise all the money they need.”
Centre manager Doug Long says the charity is “quite unique” in the North-East in offering free conductive education. However, Heel & Toe is now “at saturation level” and needs to appoint a second conductor.
Recently the charity was awarded £9,027 of National Lottery funds to spend on specialist equipment.
That’s a big help, but the charity needs to expand.
“We need to raise £86,000 a year at the moment, but we have big plans for the future. By the end of 2012 we plan to spend £250,000,” says Doug.
The recent tragic death of Conservative leader David Cameron’s six-year-old son Ivan – who had a severe form of cerebral palsy – has raised the profile of the condition among the general public. But Doug says the charity needs to do more.
Later this month Heel & Toe is holding its first spring charity ball at The Swallow Three Tuns Hotel, in Durham City. A black tie charity night, subtitled Black Ties, Big Hearts, the event will include a fourcourse meal, guest speaker The Northern Echo columnist, Mike Amos, live music from a North-East band, followed by a disco.
Tickets – at £40 per person – are available by table or individually.
“Raising money has got more difficult for charities recently and we really need people to get behind us,”
says Doug. “Hopefully our black tie dinner will become an annual event.
We certainly could do with the money,” he laughs.
■ The charity event is on Saturday, March 21. For tickets ring 0844-335-0512 or 01388- 890775 or email info@heeland toe.org.uk
Health Editor Barry Nelson visits a charity providing vital support for North-East children.
IN a mobile classroom on the edge of a County Durham town something remarkable is happening.
Kneeling on a floor pad and with arms outstretched, a teacher trained at the world-famous Peto Institute, in Budapest, is working with a severely disabled child. By gently guiding the child’s movements, encouraging him to stretch, reach out and grasp toys, the Hungarian “conductor” is able to gradually increase his mobility and flexibility.
Throughout the hour-long session, the conductor also talks and sings to the child, who responds with gurgles and cries of pleasure. But it is not all fun. From time to time the child grimaces as he struggles to complete a movement that an able-bodied youngster would find child’s play.
But for a youngster with cerebral palsy, just grasping a toy rattle and lifting it into the air takes a huge, unimaginable effort.
Every day children from all over the North-East are brought by their parents to the Heel & Toe charity on the outskirts of Spennymoor, so conductive education therapist Zsuzsanna Luteran can work her magic. Remarkably, the charity offers such therapy free of charge to families in the North-East who need it. With access to NHS physiotherapists strictly rationed, this has proved to be a lifeline for desperate families. In every case the 34 children who have regular conductive education sessions at Heel & Toe have benefited and made steady progress.
Now the charity is urgently appealing to the public to help them expand their services.
Zsuzsanna is an exponent of conductive education, a now internationally famous method of improving motor skills of children with cerebral palsy, spina bifida and other motor disorders. Developed at the Peto Institute more than 40 years ago, conductive education is now widely used by therapists across the world.
The institute’s website explains that conductive education is not a cure but “a method of exercises and education… performed intensively, five hours per day, five days per week, in small groups”.
ZSUZSANNA is delighted that families who use Heel & Toe keep coming back for more. “I am very happy that all of the parents of the children I teach have kept on coming back since October,” she says.
In every child she works with, Zsuzsanna says there has been progress. “I have seen positive changes in all of them, especially the younger ones,” she says.
Zsuzsanna says one of her clients, a ten-month-old baby, was like “a big piece of stone” when he was first brought to the centre. “At first he was unable to move, but now he can roll, creep and even sit up. His mum said she never expected him to do that.”
Each lesson is a mixture of group exercises and intensive, one-to-one sessions. “People sometimes think conductors are just physiotherapists, but it is much more,” says Zsuzsanna. “It covers every aspect of the person. It is everything – moving, speaking, eating, building up confidence – and they have to do this at home as well.”
A regular at Heel & Toe is twoyear- old Max, whose mother Leeann Harker comes from Crook. The very fact Max is alive is something of a miracle. “I was supposed to have twins in March,” says Leeann, “but they came very prematurely in November.
Michael died after four days and Max suffered from a massive bleed.”
After 100 days in hospital and a series of operations, she was able to bring Max home. Diagnosed with a severe form of cerebral palsy, experts warned her that he would probably be in a vegetative state. But while Max finds it impossible to perform most of the tasks a “normal” two-year-old could do, Leeann says he is making progress and can still communicate.
“He knows what he wants and he knows how to tell me. If he is hungry he sticks his tongue out. He can be very cheeky,” she says.
The conductive education sessions have been “absolutely fantastic”, according to Leeann. “He used to make little fists and hold them tight. He can now open his hands more easily.
He also tries to creep now and he can almost sit up on his own. We would be lost without this place. I just hope they raise all the money they need.”
Centre manager Doug Long says the charity is “quite unique” in the North-East in offering free conductive education. However, Heel & Toe is now “at saturation level” and needs to appoint a second conductor.
Recently the charity was awarded £9,027 of National Lottery funds to spend on specialist equipment.
That’s a big help, but the charity needs to expand.
“We need to raise £86,000 a year at the moment, but we have big plans for the future. By the end of 2012 we plan to spend £250,000,” says Doug.
The recent tragic death of Conservative leader David Cameron’s six-year-old son Ivan – who had a severe form of cerebral palsy – has raised the profile of the condition among the general public. But Doug says the charity needs to do more.
Later this month Heel & Toe is holding its first spring charity ball at The Swallow Three Tuns Hotel, in Durham City. A black tie charity night, subtitled Black Ties, Big Hearts, the event will include a fourcourse meal, guest speaker The Northern Echo columnist, Mike Amos, live music from a North-East band, followed by a disco.
Tickets – at £40 per person – are available by table or individually.
“Raising money has got more difficult for charities recently and we really need people to get behind us,”
says Doug. “Hopefully our black tie dinner will become an annual event.
We certainly could do with the money,” he laughs.
■ The charity event is on Saturday, March 21. For tickets ring 0844-335-0512 or 01388- 890775 or email info@heeland toe.org.uk
Labels: Access, Cerebral Palsy, Conductive Education, David Cameron, Physiotherapy
01 March 2009
'My cerebral palsy is just another arbitrary feature, like eye colour'
Comedian and Extras actress Francesca Martinez refuses to be defined or limited by the mild cerebral palsy that left her 'wobbly'
Last December, I guested on the topical news Radio 4 show Broadcasting House. One of the stories up for debate was David Cameron's Christmas card, which featured a photo of his family, including his young son Ivan, who had cerebral palsy. There was talk of the Tory leader using Ivan as a political tool to make him seem more caring and sympathetic.
I felt compelled to point out that Ivan was his son and therefore should be in a family photo. I imagined that had Mr Cameron left Ivan out of this family scene, he would have been chastised for keeping him invisible. He couldn't win. I thought the only fair question was whether any of his children should have appeared and if it was right of him to place them in the media spotlight. As usual, someone's disability had made them an issue first and a human being second.
That's the huge secret about disability – anyone with experience of it knows that a disabled person is just a person they love. A disability is like hair colour, eye colour, height or weight, just another arbitrary feature that those around you cease to focus on and which, ultimately, becomes normality.
I was born with mild cerebral palsy: according to my mother, if I was like a newborn foal. I like to think that this charming comparison is because of their wobbly legs and slim frame. I like to call myself… wobbly. I admit that the doctor did not use that word as he informed my parents of my condition when I was a somewhat floppy two-year-old in my mother's arms, but I can't stand those depressing terms that someone deemed appropriate to burden a human being with for the rest of their lives.
No wonder people are still so nervous about disability, and I can only conclude that names for them are hand-picked from a tombola of words most likely to induce fear and panic. Just stick your hand in and pull one out. Syndrome. Disorder. Cerebral. Palsy. Disease. Spina. Bifida. The rest is easy. Take two words, mix them together, apply to one human being and, hey presto, you've got a ready-made freak. Labels are powerful tools that shape attitudes and tell us much about how the things they are describing are viewed. I have spent my life trying to extricate myself from the label that was plastered all over me at birth.
My parents were young when I wobbled into their world, and full of love for their first child. After hospital negligence during my birth, I did not breathe for seven minutes, resulting in starvation of oxygen to the brain. After I was resuscitated, my mum said that the only sign that "something was up" was the repeated reflex tests that were done on me before I left.
When, aged two, I was finally diagnosed, my parents did not seem fazed by the revelation. Sometimes I've asked them if they were shocked or upset at my diagnosis, but all they say is: "You were Francesca and completely normal to us." This attitude shaped my childhood and allowed me to be happy and confident, totally unaware of difference.
At school, I was popular and naughty, a real tomboy who had her first boyfriend aged five. My brother came along and, to him, I really am normal, and when his friends asked him why his big sister "talked funny", he'd reply with a puzzled: "What do you mean?"
At secondary school I lost all my confidence and, for the first time, became aware of my difference. Getting a main part in the TV show Grange Hill was a dream come true. Yet, despite five happy years on it, I hit 18 feeling isolated and insecure.
Thankfully, my father Alex, who is a playwright and novelist, wrote a film script for me, as I was being offered so few acting parts. I loved it, except for the fact he'd made my character a stand-up comedian, the most terrifying job in the world. I dragged myself to a comedy workshop in the name of research and, 18 months later, was on stage at the Edinburgh Festival winning an award for best new comic.
That moment was 10 years ago. Stand-up comedy has changed my life. Standing on stage and being honest about who I am allowed me to embrace my so-called imperfections and, amazingly, allowed the audience to get past any initial fears or nerves and see me as a person. Humour is a great way to challenge attitudes on difference and normality.
Being a wobbly comedian has meant I've had extra press and attention, but I've also come up against fear and prejudice. In 2002, the Perrier judges were told not to come and see my Edinburgh show because I was just a "novelty act", a BBC TV stand-up show would not book me because they thought I would make the audience "nervous",and I wasn't allowed on a BBC radio show because of my "funny" voice! Luckily I've been supported by other comedians such as Frank Skinner and Ricky Gervais, who have either given me parts or had me on their shows.
The media does not represent society truthfully and keeps "difference" largely invisible, and this means it is not seen as a normal part of life. Anyone can become disabled - the fact is, we will always be people first, with things we can and can't do second. I think everyone in life has their own "disability" - something that challenges them - whether it is visible or not.
Francesca Martinez is performing in aid of War On Want on March 5, 2009, at Shepherds Bush Empire, www.waronwant.org/comedygig
Last December, I guested on the topical news Radio 4 show Broadcasting House. One of the stories up for debate was David Cameron's Christmas card, which featured a photo of his family, including his young son Ivan, who had cerebral palsy. There was talk of the Tory leader using Ivan as a political tool to make him seem more caring and sympathetic.
I felt compelled to point out that Ivan was his son and therefore should be in a family photo. I imagined that had Mr Cameron left Ivan out of this family scene, he would have been chastised for keeping him invisible. He couldn't win. I thought the only fair question was whether any of his children should have appeared and if it was right of him to place them in the media spotlight. As usual, someone's disability had made them an issue first and a human being second.
That's the huge secret about disability – anyone with experience of it knows that a disabled person is just a person they love. A disability is like hair colour, eye colour, height or weight, just another arbitrary feature that those around you cease to focus on and which, ultimately, becomes normality.
I was born with mild cerebral palsy: according to my mother, if I was like a newborn foal. I like to think that this charming comparison is because of their wobbly legs and slim frame. I like to call myself… wobbly. I admit that the doctor did not use that word as he informed my parents of my condition when I was a somewhat floppy two-year-old in my mother's arms, but I can't stand those depressing terms that someone deemed appropriate to burden a human being with for the rest of their lives.
No wonder people are still so nervous about disability, and I can only conclude that names for them are hand-picked from a tombola of words most likely to induce fear and panic. Just stick your hand in and pull one out. Syndrome. Disorder. Cerebral. Palsy. Disease. Spina. Bifida. The rest is easy. Take two words, mix them together, apply to one human being and, hey presto, you've got a ready-made freak. Labels are powerful tools that shape attitudes and tell us much about how the things they are describing are viewed. I have spent my life trying to extricate myself from the label that was plastered all over me at birth.
My parents were young when I wobbled into their world, and full of love for their first child. After hospital negligence during my birth, I did not breathe for seven minutes, resulting in starvation of oxygen to the brain. After I was resuscitated, my mum said that the only sign that "something was up" was the repeated reflex tests that were done on me before I left.
When, aged two, I was finally diagnosed, my parents did not seem fazed by the revelation. Sometimes I've asked them if they were shocked or upset at my diagnosis, but all they say is: "You were Francesca and completely normal to us." This attitude shaped my childhood and allowed me to be happy and confident, totally unaware of difference.
At school, I was popular and naughty, a real tomboy who had her first boyfriend aged five. My brother came along and, to him, I really am normal, and when his friends asked him why his big sister "talked funny", he'd reply with a puzzled: "What do you mean?"
At secondary school I lost all my confidence and, for the first time, became aware of my difference. Getting a main part in the TV show Grange Hill was a dream come true. Yet, despite five happy years on it, I hit 18 feeling isolated and insecure.
Thankfully, my father Alex, who is a playwright and novelist, wrote a film script for me, as I was being offered so few acting parts. I loved it, except for the fact he'd made my character a stand-up comedian, the most terrifying job in the world. I dragged myself to a comedy workshop in the name of research and, 18 months later, was on stage at the Edinburgh Festival winning an award for best new comic.
That moment was 10 years ago. Stand-up comedy has changed my life. Standing on stage and being honest about who I am allowed me to embrace my so-called imperfections and, amazingly, allowed the audience to get past any initial fears or nerves and see me as a person. Humour is a great way to challenge attitudes on difference and normality.
Being a wobbly comedian has meant I've had extra press and attention, but I've also come up against fear and prejudice. In 2002, the Perrier judges were told not to come and see my Edinburgh show because I was just a "novelty act", a BBC TV stand-up show would not book me because they thought I would make the audience "nervous",and I wasn't allowed on a BBC radio show because of my "funny" voice! Luckily I've been supported by other comedians such as Frank Skinner and Ricky Gervais, who have either given me parts or had me on their shows.
The media does not represent society truthfully and keeps "difference" largely invisible, and this means it is not seen as a normal part of life. Anyone can become disabled - the fact is, we will always be people first, with things we can and can't do second. I think everyone in life has their own "disability" - something that challenges them - whether it is visible or not.
Francesca Martinez is performing in aid of War On Want on March 5, 2009, at Shepherds Bush Empire, www.waronwant.org/comedygig
Labels: Cerebral Palsy, David Cameron, Francesca Martinez, media
27 February 2009
Cameron: 'If we can't look after him, we have failed'
The Times
February 26, 2009
In an extract from their book, David Cameron's biographers explain the impact of Ivan
Francis Elliott and James Hanning
Ivan Cameron was born in Queen Charlotte's Hospital in London on Monday, April 8, 2002. The birth was by a Caesarean section, made necessary at the last minute because Ivan was the wrong way round in the womb. Otherwise it was a normal delivery of an apparently healthy baby boy. It was a joyful event but even then a period of mixed emotions: in nearby Hammersmith Hospital at the same time, David Cameron's godfather Tim Rathbone, Ian Cameron's schoolfriend and a significant personal and political inspiration, was having tests for cancer. He visited Samantha in hospital but was to die some weeks later. “The fact that he was dying while my son was being born seemed to have some kind of symbolism. It made his birth all the more poignant and moving,” Cameron later told a friend.
Although Ivan was their first child, they quickly sensed that something was wrong. At Queen Charlotte's he seemed to have occasional spasms. Otherwise he seemed a very sleepy child and Samantha struggled with breast-feeding. But the health visitor paying the routine postnatal call to Ginge Manor, where mother and baby had gone after leaving Queen Charlotte's, saw no reason to be alarmed.
Within a week of his birth it was clear that Ivan, still very sleepy, was losing weight. Sometimes his hand would spring open in a series of small but repetitive impulses. As first-time parents, David and Samantha Cameron had nothing to compare their son's behaviour to and, reassured by the advice of the health visitor, showed off their son to Dominic and Tif Loehnis that weekend.
But, as Ivan entered his second week, the jerks were becoming more pronounced. Annabel Astor had become sufficiently concerned to drive her daughter - on her birthday - and grandson to the local GP.
The doctor's initial diagnosis was that the newborn was suffering from a kidney malfunction. He directed them to the accident and emergency department of the John Radcliffe Hospital in Oxford. It was here that the baby had his first major seizure in front of a doctor.
The nature of Ivan's condition was beginning to be shockingly apparent.
David Cameron, joining his wife at the hospital, shared her distress as their tiny child was subjected to 48 hours of blood tests, brain scans and lumbar punctures. Of all the tests, the one that was picking up the most identifiable evidence of Ivan's problem was the electroencephalogram (EEG). The EEG records brainwave patterns from electrical signals emitted by the brain. This showed the high-voltage “spikes” that occur in epilepsy, but they were followed by very little activity.
After one last confirming EEG, Mike Pike, a paediatrician, took the couple into a side room to talk. With ominous purposefulness, he placed a box of Kleenex beside them. He told them that this was very serious, that the pattern he had seen was consistent with “a very poor outcome and severe disability”. Ivan, he said, would have “very serious difficulties”. Cameron, struggling to take the gravity of the diagnosis on board, said: “When you say he's got serious difficulties, does that mean he's going to have trouble doing his maths, or does that mean he's never going to be able to walk and talk?” Pike said simply: “I'm afraid it means he probably won't walk or talk.” Within a few days they had a name for Ivan's condition: Ohtahara syndrome.
The National Institute of Neurological Disorders and Stroke (NINDS) provides the following definition: “a neurological disorder characterised by seizures ... most commonly caused by metabolic disorders or structural damage in the brain, although the cause or causes in many cases can't be determined”. Most infants “show significant underdevelopment of part or all of the cerebral hemispheres. The course of Ohtahara syndrome is severely progressive. Seizures become more frequent, accompanied by physical and mental retardation. Some children will die in infancy; others will survive but be profoundly handicapped.” Unsure whether Ivan would live for weeks or years, Cameron ensured that his son was christened at the earliest opportunity.
Cameron has said that the news hit him “like a freight train”. A friend observes that the couple entered “a very, very grim and difficult period” Emotionally, they had to overcome the discrepancy between the elation they had felt at the birth of their first child and the reality of what lay ahead. “You are depressed for a while because you are grieving for the difference between your hopes and the reality,” he has said.
There were immediate practical issues to address, the most pressing of which was how best to manage his condition. Ivan went through further tests at Great Ormond Street and Queen Mary's hospitals in London as doctors experimented with cocktails of drugs. David and Samantha Cameron, taking it in turns to sleep beside their son on hospital floors, were given a brutal lesson in the reality of life as the parent of a disabled child. After his initial shock Cameron has described how he began to surface. “There was a moment driving home from hospital and just thinking ‘We are going to get through this. If we can't do a good job and look after him, then we have failed'.” Initially the Camerons tried to look after Ivan themselves, without the support of their local authority's social services department. For a year the couple struggled with the situation largely on their own, although they had help from a special-needs-trained nurse during the day. Three and a half months after Ivan was born, Samantha had returned to work - as planned - for two days a week, and after five months she was back doing nine-day fortnights. It was a difficult decision.
On the one hand she worried inconsolably about Ivan's minute-to-minute care, but, on the other, her career was important to her and she had always intended to carry on working.
Childcare was shared between them. Journalists spotted Cameron bottle-feeding his son in Westminster that summer and cited it as evidence of the changing nature of the Tory party, not knowing the fullness of that truth. The young Tory MP also took Ivan to meetings at Carlton, where he remained a consultant. Former colleagues could hardly fail to notice the difference in him. At Edwina Paine's engagement party, one said he seemed a “different man ... he seemed much less frivolous”. Another senior colleague said: “He'd walk around with that baby in a basket, he'd come to every meeting.” Where previously Cameron had appeared “arrogant”, “this was a real leveller”.
Giles Andreae has said that Ivan's handicap had given Cameron “more humility”. Cameron has admitted as much himself. “Having a severely disabled son does bring you into contact with a lot of other elements of life. You do spend a lot of time in hospitals, you meet a lot of other parents and families in the same situation. It's an eye-opener.” At one point, Ivan's blood pressure shot up and he had to be rushed to the renal unit at Great Ormond Street. Cameron found that hospital visit in particular a strange experience. “He was struck by the fact that there were all these kids there who had been on dialysis for months, being incredibly courageous with these awful, awful problems,” says a friend. “I think it made him realise that there are other people in similar situations. On one occasion he was there all night, and at about 4am he was reading Jack and Jill to someone else's kids, and then had to go to Parliament early the next day to carry on with life as normal.”
© Francis Elliott and James Hanning 2007. Extracted from Cameron: The Rise of the New Conservative (Fourth Estate, £18.99) Available from Times BooksFirst for £17.09, free p&p. 0870 1608080, timesonline.co.uk/booksfirst. The Times, on behalf of the authors and the publisher, has made a donation to Mencap and St Mary's Hospital
February 26, 2009
In an extract from their book, David Cameron's biographers explain the impact of Ivan
Francis Elliott and James Hanning
Ivan Cameron was born in Queen Charlotte's Hospital in London on Monday, April 8, 2002. The birth was by a Caesarean section, made necessary at the last minute because Ivan was the wrong way round in the womb. Otherwise it was a normal delivery of an apparently healthy baby boy. It was a joyful event but even then a period of mixed emotions: in nearby Hammersmith Hospital at the same time, David Cameron's godfather Tim Rathbone, Ian Cameron's schoolfriend and a significant personal and political inspiration, was having tests for cancer. He visited Samantha in hospital but was to die some weeks later. “The fact that he was dying while my son was being born seemed to have some kind of symbolism. It made his birth all the more poignant and moving,” Cameron later told a friend.
Although Ivan was their first child, they quickly sensed that something was wrong. At Queen Charlotte's he seemed to have occasional spasms. Otherwise he seemed a very sleepy child and Samantha struggled with breast-feeding. But the health visitor paying the routine postnatal call to Ginge Manor, where mother and baby had gone after leaving Queen Charlotte's, saw no reason to be alarmed.
Within a week of his birth it was clear that Ivan, still very sleepy, was losing weight. Sometimes his hand would spring open in a series of small but repetitive impulses. As first-time parents, David and Samantha Cameron had nothing to compare their son's behaviour to and, reassured by the advice of the health visitor, showed off their son to Dominic and Tif Loehnis that weekend.
But, as Ivan entered his second week, the jerks were becoming more pronounced. Annabel Astor had become sufficiently concerned to drive her daughter - on her birthday - and grandson to the local GP.
The doctor's initial diagnosis was that the newborn was suffering from a kidney malfunction. He directed them to the accident and emergency department of the John Radcliffe Hospital in Oxford. It was here that the baby had his first major seizure in front of a doctor.
The nature of Ivan's condition was beginning to be shockingly apparent.
David Cameron, joining his wife at the hospital, shared her distress as their tiny child was subjected to 48 hours of blood tests, brain scans and lumbar punctures. Of all the tests, the one that was picking up the most identifiable evidence of Ivan's problem was the electroencephalogram (EEG). The EEG records brainwave patterns from electrical signals emitted by the brain. This showed the high-voltage “spikes” that occur in epilepsy, but they were followed by very little activity.
After one last confirming EEG, Mike Pike, a paediatrician, took the couple into a side room to talk. With ominous purposefulness, he placed a box of Kleenex beside them. He told them that this was very serious, that the pattern he had seen was consistent with “a very poor outcome and severe disability”. Ivan, he said, would have “very serious difficulties”. Cameron, struggling to take the gravity of the diagnosis on board, said: “When you say he's got serious difficulties, does that mean he's going to have trouble doing his maths, or does that mean he's never going to be able to walk and talk?” Pike said simply: “I'm afraid it means he probably won't walk or talk.” Within a few days they had a name for Ivan's condition: Ohtahara syndrome.
The National Institute of Neurological Disorders and Stroke (NINDS) provides the following definition: “a neurological disorder characterised by seizures ... most commonly caused by metabolic disorders or structural damage in the brain, although the cause or causes in many cases can't be determined”. Most infants “show significant underdevelopment of part or all of the cerebral hemispheres. The course of Ohtahara syndrome is severely progressive. Seizures become more frequent, accompanied by physical and mental retardation. Some children will die in infancy; others will survive but be profoundly handicapped.” Unsure whether Ivan would live for weeks or years, Cameron ensured that his son was christened at the earliest opportunity.
Cameron has said that the news hit him “like a freight train”. A friend observes that the couple entered “a very, very grim and difficult period” Emotionally, they had to overcome the discrepancy between the elation they had felt at the birth of their first child and the reality of what lay ahead. “You are depressed for a while because you are grieving for the difference between your hopes and the reality,” he has said.
There were immediate practical issues to address, the most pressing of which was how best to manage his condition. Ivan went through further tests at Great Ormond Street and Queen Mary's hospitals in London as doctors experimented with cocktails of drugs. David and Samantha Cameron, taking it in turns to sleep beside their son on hospital floors, were given a brutal lesson in the reality of life as the parent of a disabled child. After his initial shock Cameron has described how he began to surface. “There was a moment driving home from hospital and just thinking ‘We are going to get through this. If we can't do a good job and look after him, then we have failed'.” Initially the Camerons tried to look after Ivan themselves, without the support of their local authority's social services department. For a year the couple struggled with the situation largely on their own, although they had help from a special-needs-trained nurse during the day. Three and a half months after Ivan was born, Samantha had returned to work - as planned - for two days a week, and after five months she was back doing nine-day fortnights. It was a difficult decision.
On the one hand she worried inconsolably about Ivan's minute-to-minute care, but, on the other, her career was important to her and she had always intended to carry on working.
Childcare was shared between them. Journalists spotted Cameron bottle-feeding his son in Westminster that summer and cited it as evidence of the changing nature of the Tory party, not knowing the fullness of that truth. The young Tory MP also took Ivan to meetings at Carlton, where he remained a consultant. Former colleagues could hardly fail to notice the difference in him. At Edwina Paine's engagement party, one said he seemed a “different man ... he seemed much less frivolous”. Another senior colleague said: “He'd walk around with that baby in a basket, he'd come to every meeting.” Where previously Cameron had appeared “arrogant”, “this was a real leveller”.
Giles Andreae has said that Ivan's handicap had given Cameron “more humility”. Cameron has admitted as much himself. “Having a severely disabled son does bring you into contact with a lot of other elements of life. You do spend a lot of time in hospitals, you meet a lot of other parents and families in the same situation. It's an eye-opener.” At one point, Ivan's blood pressure shot up and he had to be rushed to the renal unit at Great Ormond Street. Cameron found that hospital visit in particular a strange experience. “He was struck by the fact that there were all these kids there who had been on dialysis for months, being incredibly courageous with these awful, awful problems,” says a friend. “I think it made him realise that there are other people in similar situations. On one occasion he was there all night, and at about 4am he was reading Jack and Jill to someone else's kids, and then had to go to Parliament early the next day to carry on with life as normal.”
© Francis Elliott and James Hanning 2007. Extracted from Cameron: The Rise of the New Conservative (Fourth Estate, £18.99) Available from Times BooksFirst for £17.09, free p&p. 0870 1608080, timesonline.co.uk/booksfirst. The Times, on behalf of the authors and the publisher, has made a donation to Mencap and St Mary's Hospital
Labels: cancer, care, Cerebral Palsy, David Cameron, Disability, epilepsy, Ivan, ohtahara syndrome, special needs
Hospices where Ivan's legacy lives on
- Health News, Health & Wellbeing - The Independent
The Camerons make appeal for carers and charities that helped their eldest child
By Amol Rajan
Hours after their six-year-old son Ivan died on Wednesday morning, David and Samantha Cameron asked well-wishers not to send them flowers. Instead, the couple said, donations should be sent to one of the many institutions which had helped Ivan, who suffered from a combination of severe epilepsy and cerebral palsy known as Ohtahara syndrome, throughout his brief and difficult life.
If it were possible for good to emerge from the death of their eldest child, the Camerons felt, it would be that these care centres, which have been pillars of hope in the lives of thousands of parents, received the recognition they deserve.
Among them are two hospices linked by an unlikely meeting 14 years ago. Sister Frances Dominica, the British nurse who in 1982 opened the world's first children's hospice, Helen House, in Oxfordshire, was invited for coffee by Kathryn Turner, a 55-year-old administrator working at the React children's charity.
Inspired by Helen House, and galvanised by her meeting with Sister Frances, Ms Turner set about trying to create a similar institution in Hampton, Middlesex. It took her 10 years to raise the funds – £3m – with donations ranging from 10p to £100,000.
Eventually, in 2005, the Shooting Star Children's Hospice was founded. At the time it was one of only eight such hospices in the world; today, it is an international standard-bearer. The Camerons, who spend weekends in the Tory leader's constituency of Witney, in Oxfordshire, used Helen House extensively when away from London. But during the week, they relied even more heavily on the outreach services – meaning nursing visits to the family home in Kensington – provided by Shooting Star.
Open 365 days a year, the hospice offers several types of service, entirely free of charge, to parents of children with disabilities. Aside from outreach staff and day care, it provides "end of life care" to support parents in the final stages of children's lives.
As well as family rooms, children's bedrooms and therapy rooms designed to provide relaxation, Shooting Star has an arts and crafts room, a sensory room with soft furnishings and music, outdoor play areas and a peaceful garden for grieving parents. Its hydrotherapy pool and spa is hugely popular because it gives children freedom they otherwise don't have.
"David and Samantha would have outreach nurses visit them quite regularly," said Dalton Leong, a former Barclay's banker who now works full-time as chief executive at Shooting Star. He added: "They also came to us regularly on our short break scheme, where they would drop Ivan and his brother and sister off with us while they recharge their batteries. Sometimes this would be for a few hours; at other times it would be for a few days."
Mr Cameron has said repeatedly that his political outlook has been conditioned hugely by his experience of hospices, which he as Prime Minister would seek to give greater prominence. With growing demand – the paucity of such facilities means they are hugely over-subscribed – comes growing needs too. The centre, which receives only 8 per cent of its funding from the Department of Health, costs £8,000 per day to run. Its annual fundraising target rose last year, from £2.5m to £3m. With a third of its funding coming from local community donations, Britain's recession is going to make hitting that target difficult this year.
Campaigning from some well-known patrons has helped. These include Sir Cliff Richard, Sir Trevor McDonald, Joan Collins, Richard E Grant, Vince Cable and Laurence Llewelyn-Bowen, the last of whom donated £500,000 he earned from a Valentine's Day edition of Who Wants To Be A Millionaire? But few people realise the fragility of these centres' finances, the Spandau Ballet singer Tony Hadley told The Independent yesterday. Hadley has played in several fundraising concerts free of charge for the hospice.
"I was so upset by what happened to Ivan, so upset, as was my wife and everyone we know," he said. "Before I got involved with Shooting Star, I had no idea they received hardly any help from the Government. These places are so fundamental to their communities, and so much good comes of them, that it's just pure scandalous that they struggle for cash. Nothing will bring Ivan back, but if Shooting Star can keep going that will be a wonderful legacy for him to leave."
Wellwishers should sent donations to Mencap, the Friends of St Mary's Hospital or one of three other charities – the Friends of Jack Tizard School; Helen and Douglas House, in Twickenham, and the Shooting Stars House, in Hampton, Middlesex.
The Camerons make appeal for carers and charities that helped their eldest child
By Amol Rajan
Hours after their six-year-old son Ivan died on Wednesday morning, David and Samantha Cameron asked well-wishers not to send them flowers. Instead, the couple said, donations should be sent to one of the many institutions which had helped Ivan, who suffered from a combination of severe epilepsy and cerebral palsy known as Ohtahara syndrome, throughout his brief and difficult life.
If it were possible for good to emerge from the death of their eldest child, the Camerons felt, it would be that these care centres, which have been pillars of hope in the lives of thousands of parents, received the recognition they deserve.
Among them are two hospices linked by an unlikely meeting 14 years ago. Sister Frances Dominica, the British nurse who in 1982 opened the world's first children's hospice, Helen House, in Oxfordshire, was invited for coffee by Kathryn Turner, a 55-year-old administrator working at the React children's charity.
Inspired by Helen House, and galvanised by her meeting with Sister Frances, Ms Turner set about trying to create a similar institution in Hampton, Middlesex. It took her 10 years to raise the funds – £3m – with donations ranging from 10p to £100,000.
Eventually, in 2005, the Shooting Star Children's Hospice was founded. At the time it was one of only eight such hospices in the world; today, it is an international standard-bearer. The Camerons, who spend weekends in the Tory leader's constituency of Witney, in Oxfordshire, used Helen House extensively when away from London. But during the week, they relied even more heavily on the outreach services – meaning nursing visits to the family home in Kensington – provided by Shooting Star.
Open 365 days a year, the hospice offers several types of service, entirely free of charge, to parents of children with disabilities. Aside from outreach staff and day care, it provides "end of life care" to support parents in the final stages of children's lives.
As well as family rooms, children's bedrooms and therapy rooms designed to provide relaxation, Shooting Star has an arts and crafts room, a sensory room with soft furnishings and music, outdoor play areas and a peaceful garden for grieving parents. Its hydrotherapy pool and spa is hugely popular because it gives children freedom they otherwise don't have.
"David and Samantha would have outreach nurses visit them quite regularly," said Dalton Leong, a former Barclay's banker who now works full-time as chief executive at Shooting Star. He added: "They also came to us regularly on our short break scheme, where they would drop Ivan and his brother and sister off with us while they recharge their batteries. Sometimes this would be for a few hours; at other times it would be for a few days."
Mr Cameron has said repeatedly that his political outlook has been conditioned hugely by his experience of hospices, which he as Prime Minister would seek to give greater prominence. With growing demand – the paucity of such facilities means they are hugely over-subscribed – comes growing needs too. The centre, which receives only 8 per cent of its funding from the Department of Health, costs £8,000 per day to run. Its annual fundraising target rose last year, from £2.5m to £3m. With a third of its funding coming from local community donations, Britain's recession is going to make hitting that target difficult this year.
Campaigning from some well-known patrons has helped. These include Sir Cliff Richard, Sir Trevor McDonald, Joan Collins, Richard E Grant, Vince Cable and Laurence Llewelyn-Bowen, the last of whom donated £500,000 he earned from a Valentine's Day edition of Who Wants To Be A Millionaire? But few people realise the fragility of these centres' finances, the Spandau Ballet singer Tony Hadley told The Independent yesterday. Hadley has played in several fundraising concerts free of charge for the hospice.
"I was so upset by what happened to Ivan, so upset, as was my wife and everyone we know," he said. "Before I got involved with Shooting Star, I had no idea they received hardly any help from the Government. These places are so fundamental to their communities, and so much good comes of them, that it's just pure scandalous that they struggle for cash. Nothing will bring Ivan back, but if Shooting Star can keep going that will be a wonderful legacy for him to leave."
Wellwishers should sent donations to Mencap, the Friends of St Mary's Hospital or one of three other charities – the Friends of Jack Tizard School; Helen and Douglas House, in Twickenham, and the Shooting Stars House, in Hampton, Middlesex.
Labels: Carers, Cerebral Palsy, David Cameron, epilepsy, Hospices where Ivan's legacy lives on
25 February 2009
Cameron's Son Dies
Tragedy of disabled Ivan, six
TORY leader David Cameron’s disabled son Ivan has died, it was announced today.
FAMILY MAN: David Cameron with wife Samantha, disabled son Ivan, daughter Nancy and little Arthur on a walk near his Oxfordshire home in 2007. Ivan died early today
A Conservative Party spokesman said: ‘‘It is with great sadness that David and Samantha Cameron must confirm the death of their six-year-old son Ivan.
‘‘Ivan, who suffered from cerebral palsy and severe epilepsy, was taken ill overnight and died at St Mary’s Hospital, Paddington, early this morning.
‘‘David and Samantha would ask that their privacy is respected at this terribly difficult time.’’
Ivan was the Camerons’ first child, born at Queen Charlotte’s Hospital in London on April 8, 2002. He suffered his first seizure within weeks and was in and out of hospitals all of his life.
On learning of his son’s illness, Mr Cameron has said in the past: ‘‘It hits you like a freight train because all the expectations you have for your child change immediately.’’
They have two other children, Nancy, five, and Arthur, three.
Prime Minister Gordon Brown led condolences today - saying the loss of a child was something “no parent should have to bear”.
Mr Brown, whose own baby daughter died in 2002, said: “Sarah and I were very saddened to hear of the death of Ivan and we have sent our condolences to David and Samantha. I know Ivan was a child who brought joy to all those who knew him and his was a life surrounded by love. The thoughts and prayers of the whole country are with David, Samantha and their family.”
Today’s Prime Minister’s Questions in the Commons has been suspended, Downing Street said.
TORY leader David Cameron’s disabled son Ivan has died, it was announced today.
FAMILY MAN: David Cameron with wife Samantha, disabled son Ivan, daughter Nancy and little Arthur on a walk near his Oxfordshire home in 2007. Ivan died early today
A Conservative Party spokesman said: ‘‘It is with great sadness that David and Samantha Cameron must confirm the death of their six-year-old son Ivan.
‘‘Ivan, who suffered from cerebral palsy and severe epilepsy, was taken ill overnight and died at St Mary’s Hospital, Paddington, early this morning.
‘‘David and Samantha would ask that their privacy is respected at this terribly difficult time.’’
Ivan was the Camerons’ first child, born at Queen Charlotte’s Hospital in London on April 8, 2002. He suffered his first seizure within weeks and was in and out of hospitals all of his life.
On learning of his son’s illness, Mr Cameron has said in the past: ‘‘It hits you like a freight train because all the expectations you have for your child change immediately.’’
They have two other children, Nancy, five, and Arthur, three.
Prime Minister Gordon Brown led condolences today - saying the loss of a child was something “no parent should have to bear”.
Mr Brown, whose own baby daughter died in 2002, said: “Sarah and I were very saddened to hear of the death of Ivan and we have sent our condolences to David and Samantha. I know Ivan was a child who brought joy to all those who knew him and his was a life surrounded by love. The thoughts and prayers of the whole country are with David, Samantha and their family.”
Today’s Prime Minister’s Questions in the Commons has been suspended, Downing Street said.
Labels: Cerebral Palsy, David Cameron, epilepsy
13 August 2008
Welfare to work: A false reasoning is driving benefit cuts | Society
James Purnell, who initiated a review of the conditions attached to benefits given to lone parents, unemployed people and disabled claimants.
There is a scene in Michael Moore's Bowling for Columbine where the film-maker investigates the home life of a six-year-old boy who has shot his Michigan classmate. He discovers that the boy lives with his mother and young siblings, but rarely sees his one parent. To qualify for food stamps and healthcare, mum is on a Welfare to Work programme which forces her out of the house early in the morning to make the 60-mile bus journey to the first of her two jobs. Despite travelling three hours a day to hold down two menial jobs she is unable to make ends meet and is evicted by the landlord. Days before the shooting, she takes her family to live at her brother's house, which is where her young son, unbeknown to her, lays his hands on a gun. How does a government welfare policy that results in a child being brought up by effectively two absent parents benefit the community, asks the local sheriff.
I was reminded of this emotive episode after the work and pensions secretary, James Purnell, ordered a review of the conditions attached to benefits given to lone parents, unemployed people and disabled claimants. The review, which started last week, is being undertaken by Paul Gregg, a Bristol University academic who has specialised in the interaction between benefits and income. The review is in addition to punitive proposals contained in a welfare green paper published last month to make lone parents with children as young as five prepare themselves for work, disabled claimants find a job or face tougher sanctions, and those on jobseeker's allowance for more than two years work for their dole.
A paper accompanying the review cites evidence from abroad that demonstrates how requiring participation in full-time work experience as a condition of receiving benefit, such as the Workfare schemes in the US, Canada and Australia, can get more people into work. The paper, More Support, Higher Expectations, does contain a note of caution about the US model, which despite its success at reducing the numbers on welfare was accompanied by a rise in absolute child poverty. This suggests, says the paper, that "elements of this policy approach - such as time-limiting benefits - would not further our [the UK government's] long-term goals", which are to help people find work and escape poverty.
Critics of the US Workfare scheme say people were prevented from getting, or staying in a job not because they were workshy but because of a variety of problems ranging from demands of childcare, to violent boyfriends and drugs and alcohol. These barriers to employment must be tackled before laying the blame on the individual and forfeiting their right to benefits, they argued.
In the UK, the voluntary sector has been strangely silent over the potentially disastrous consequences of coercing vulnerable people into work. Is this because many charities will be bidding for the contracts to run the new welfare system or because they fear a Tory government would impose even tougher rules? Earlier this year, David Cameron proposed a mandatory, year-long work programme of street cleaning for any jobless welfare claimant who had been signing on for two years. But attempts by politicians to win the crown as the most hardline welfare reformer leads to dangerous posturing at the expense of the most vulnerable in society.
Recent research by Ruth Patrick, a social policy graduate in Leeds suggests that while many disabled people want to work, compulsion and the threat of benefit withdrawal are clumsy tools to achieve this. Focus groups found it was discrimination by employers and poor access to the workplace that prevented disabled people from getting a job. Like the lone parents in the US, this demonstrates how deducting benefits to reduce worklessness is based on a false analysis of the problems preventing people finding work. The government should listen to welfare claimants, instead of using them to score political points.
Labels: Access, David Cameron, Employment
20 July 2008
'Revolutionary' plans for welfare
Welfare reforms due to be unveiled - including abolition of the incapacity benefit system - will "transform lives", says minister James Purnell.
The work and pensions secretary said they would offer more help to return to work, but responsibility was "vital".
There are also plans to force long-term unemployed people to work for benefits, according to a draft leaked on Friday.
Tory leader David Cameron said it was "great" the government had taken up ideas recently proposed by his party.
He promised the government the support of Conservative MPs to get the measures in the Welfare Green Paper through Parliament if they faced a rebellion by Labour backbenchers.
Speaking on the BBC's Andrew Marr show Mr Purnell said the proposals for England and Wales were "revolutionary" and would put responsibility "right at the heart of the welfare state". The worst thing about the old system was, people were given no help at all... to improve their health, to get back to work, to improve their confidence
James Purnell
The draft paper - to be published on Monday - said there could be "no right to a life on benefits" for anyone capable of working.
Mr Purnell said he welcomed Tory support because it meant doing "the right thing for the country", but said the Conservatives were placing the emphasis on responsibility without providing any support.
On incapacity benefit he said the old payments would be scrapped, claimants reassessed and a "completely different benefit" introduced.
"The worst thing about the old system was, people were given no help at all. They weren't given help to improve their health, to get back to work, to improve their confidence.
"We will make sure for the first time that everybody gets that help. And one of the revolutionary things that happen is that we will be using the benefits that we would have spent if people had stayed on the benefit... to get them back into health and back into work."
He said the government wanted to get one million people off incapacity benefit by 2015.
In February government welfare adviser David Freud suggested less than a third of the 2.7m people claiming the benefit were doing so legitimately.
'Tough choices'
Friday's leaked report said ministers were also proposing a "work for dole" scheme, requiring people to do "full-time activities" to benefit themselves and their community.
It said everyone other than severely disabled people, carers and parents of young children should be expected to look and train for work.
People who do not take up the offer of support would lose benefits, said Mr Purnell.
Giving his response to the Green Paper, Mr Cameron said: "Great - the government has taken up our ideas. I am absolutely thrilled at that.
"What (Mr Purnell) has done is very much taken the ideas we came up with in January, that are very clearly thought through and involve tough choices."
Mr Purnell said he "completely disagreed" that the proposals would be unpopular with some Labour colleagues.
"I think that people who see the way incapacity benefit or drug addiction or deep unemployment can scar communities are desperate to turn that round and when I speak to my colleagues they want a system that provides support for people, but also responsibility."
The government had already announced plans to make young people who have been out of school, training or a job for six months to do at least four weeks' "work-related activity".
The document suggests extending that to the long-term unemployed and says while it has yet to consult on how the schemes would work, they would involve "individuals engaging in a variety of full-time activities of value to themselves, their community and prospective employers."
Labels: Carers, David Cameron
14 March 2008
Coping with Cerebral Palsy
After watching the item with David Cameron and his family, it just shows how people cope in different ways when faced with disability. I am pleased to see that he was comfortable and felt it important to give people a insight into there life and ever more so in a possitive way.
As not everyone one likes to be frank about living with a disability similar to Gordon Brown not wanting to comme forward about there family. Years ago if you had a disabled child it was never mentioned as if people were scared to talk about it, and today it still goes happens which is sad and shows the level of awareness in socitey still has a lot of catching up to do, so that all disabled people can go out in the world with there head held high.
As not everyone one likes to be frank about living with a disability similar to Gordon Brown not wanting to comme forward about there family. Years ago if you had a disabled child it was never mentioned as if people were scared to talk about it, and today it still goes happens which is sad and shows the level of awareness in socitey still has a lot of catching up to do, so that all disabled people can go out in the world with there head held high.
Labels: Cerebral Palsy, David Cameron, The skies the limit
Cerebral Palsy hits the headlines coping with a disabled child
Yesterday I was moved by a feature on This Morning with Philip and Fern, they carried out a very moving feature of what it has been like for a mother who's daughter had cerebral palsy and the long hard journey and decisions that she made
When Julia Hollander's second daughter, Imogen, was born with cerebral palsy, she believed that it was her destiny to look after her.However, within a few months, the stresses of looking after a baby that was in constant pain, wouldn't feed and never slept proved to be more than she was capable of handling.When Imogen was five months old she was taken to see a neurology consultant. Scans revealed blackness on the brain where her cerebral cortex should have been, this meant that her cognitive powers had been destroyed during the traumatic birth; the prognosis was that she would never walk or talk.
The news hit Julia hard and two days before Imogen was due to come home from the hospital she stopped going to see her. Julia had done vast amounts of research on how to care for Imogen this research unearthed the truth that they could simply not afford to give her the care and attention that she deserved. This lead Julia to take the controversial decision to have Imogen fostered.Imogen was taken to live with Tania, a foster carer who has been looking after profoundly disabled children for ten years. Julia explained: "Tania had a dignity and strength that made me trust her completely. I did not feel humiliated in the way I had expected. I could understand that caring for a severely brain damaged child was something she chose to do.”Julia is very much a part of Imogen's life (she will be six in July) and she visits every couple of weeks. "I want Imogen to gain all that she can from her birth family. But I know that Tania's is her first home. The ties are still loosening. When I talk about Tania, I call her Immie's 'foster mum' rather than 'foster carer'. Sometimes I think of myself not as Immie's mother at all. I could simply be the means by which Tania's child came into the world.
"When the Bough Breaks – A Mothers Story by Julia Hollander
After watching this it got me thinking about how it must of been for my Mum Dad and family when I was diagnosed. Mum said I know what she means that there was no help early on, when you were born I don't think there was a lot known about cerebral palsy 33 years ago, compare to what is known now, so we just muddled on because we didn't know anything else.
The way I see foster parents is more of an extented family and Julia shouldn't feel judged in anyway, because at the end of the day she has done the best she could for her daugter and that is all we need to do in this life is our best. In Julia's story see says "Tania had a dignity and strength that made me trust her completely. I did not feel humiliated in the way I had expected. " but Julia had the strength and dignity to do what she did and as I believe there is a reason for everything in life and life is for living and that is what Julia is doing, giving Tania the best chance.
Cam: This is Ivan
DOTING dad David Cameron was seen for the first time by voters last night playing with his disabled son. The Tory leader was filmed feeding Ivan, five — who has a rare form of cerebral palsy. A TV crew was allowed in as the family had breakfast at home. Mr Cameron’s daughter Nancy, four, and son Arthur, two, sat on either side of him.
He admitted the move would spark accusations he was exploiting his kids for political gain. But he insisted he was a family man with nothing to hide. He said: “You have to do what you are comfortable with. If you are trying to produce policies, people want to know about you — what makes you tick, your life.
“That’s natural. Politicians can sometimes look a bit apart from everyone else.”
Mr Cameron was seen offering his children a choice of Shreddies or Cheerios cereal on ITV News. Wife Samantha helped serve breakfast wearing jeans, red flat pumps and a trendy red top. Viewers got a glimpse of their smart kitchen and lounge in Notting Hill, West London.
Ivan’s condition became known days after he was born — and he needs 24-hour care.
Mr Cameron has told Radio 4’s Desert Island Discs: “We noticed he was having these very strange movements — sudden jerky movements. “Initially we were told he was fine. Then we went to hospital and were told he had a very rare condition, a combination of epilepsy and cerebral palsy.”
PM Gordon Brown has rarely been seen with his own children John, four, and Fraser, 20 months — who suffers from cystic fibrosis. He and wife Sarah have decided never to talk about his condition. But he once opened his heart to Sky News about the death of his premature baby daughter Jennifer Jane.
Mr Cameron let in the cameras as he prepared to unveil new flexible parental leave laws tomorrow. A Tory government would give all new parents a year of time off to share, he will say.
Mums and dads will be able to take six months together or split it between them. The first 14 weeks after birth would automatically go to the mum. Tories vowed the move would not cost employers or the state more than current rules — where parents must take leave one after the other. Mr Cameron said: “I want to make this country more family friendly.
“We’re not going to solve the problems of obesity, drugs, alcohol or educational underperformance unless we help families to do their great work.” Shadow Chancellor George Osborne last night praised his boss over the film. On the BBC’s Question Time he said: “There is massive public interest in the leader of the Opposition.”
When Julia Hollander's second daughter, Imogen, was born with cerebral palsy, she believed that it was her destiny to look after her.However, within a few months, the stresses of looking after a baby that was in constant pain, wouldn't feed and never slept proved to be more than she was capable of handling.When Imogen was five months old she was taken to see a neurology consultant. Scans revealed blackness on the brain where her cerebral cortex should have been, this meant that her cognitive powers had been destroyed during the traumatic birth; the prognosis was that she would never walk or talk.
The news hit Julia hard and two days before Imogen was due to come home from the hospital she stopped going to see her. Julia had done vast amounts of research on how to care for Imogen this research unearthed the truth that they could simply not afford to give her the care and attention that she deserved. This lead Julia to take the controversial decision to have Imogen fostered.Imogen was taken to live with Tania, a foster carer who has been looking after profoundly disabled children for ten years. Julia explained: "Tania had a dignity and strength that made me trust her completely. I did not feel humiliated in the way I had expected. I could understand that caring for a severely brain damaged child was something she chose to do.”Julia is very much a part of Imogen's life (she will be six in July) and she visits every couple of weeks. "I want Imogen to gain all that she can from her birth family. But I know that Tania's is her first home. The ties are still loosening. When I talk about Tania, I call her Immie's 'foster mum' rather than 'foster carer'. Sometimes I think of myself not as Immie's mother at all. I could simply be the means by which Tania's child came into the world.
"When the Bough Breaks – A Mothers Story by Julia Hollander
After watching this it got me thinking about how it must of been for my Mum Dad and family when I was diagnosed. Mum said I know what she means that there was no help early on, when you were born I don't think there was a lot known about cerebral palsy 33 years ago, compare to what is known now, so we just muddled on because we didn't know anything else.
The way I see foster parents is more of an extented family and Julia shouldn't feel judged in anyway, because at the end of the day she has done the best she could for her daugter and that is all we need to do in this life is our best. In Julia's story see says "Tania had a dignity and strength that made me trust her completely. I did not feel humiliated in the way I had expected. " but Julia had the strength and dignity to do what she did and as I believe there is a reason for everything in life and life is for living and that is what Julia is doing, giving Tania the best chance.
Cam: This is Ivan
DOTING dad David Cameron was seen for the first time by voters last night playing with his disabled son. The Tory leader was filmed feeding Ivan, five — who has a rare form of cerebral palsy. A TV crew was allowed in as the family had breakfast at home. Mr Cameron’s daughter Nancy, four, and son Arthur, two, sat on either side of him.
He admitted the move would spark accusations he was exploiting his kids for political gain. But he insisted he was a family man with nothing to hide. He said: “You have to do what you are comfortable with. If you are trying to produce policies, people want to know about you — what makes you tick, your life.
“That’s natural. Politicians can sometimes look a bit apart from everyone else.”
Mr Cameron was seen offering his children a choice of Shreddies or Cheerios cereal on ITV News. Wife Samantha helped serve breakfast wearing jeans, red flat pumps and a trendy red top. Viewers got a glimpse of their smart kitchen and lounge in Notting Hill, West London.
Ivan’s condition became known days after he was born — and he needs 24-hour care.
Mr Cameron has told Radio 4’s Desert Island Discs: “We noticed he was having these very strange movements — sudden jerky movements. “Initially we were told he was fine. Then we went to hospital and were told he had a very rare condition, a combination of epilepsy and cerebral palsy.”
PM Gordon Brown has rarely been seen with his own children John, four, and Fraser, 20 months — who suffers from cystic fibrosis. He and wife Sarah have decided never to talk about his condition. But he once opened his heart to Sky News about the death of his premature baby daughter Jennifer Jane.
Mr Cameron let in the cameras as he prepared to unveil new flexible parental leave laws tomorrow. A Tory government would give all new parents a year of time off to share, he will say.
Mums and dads will be able to take six months together or split it between them. The first 14 weeks after birth would automatically go to the mum. Tories vowed the move would not cost employers or the state more than current rules — where parents must take leave one after the other. Mr Cameron said: “I want to make this country more family friendly.
“We’re not going to solve the problems of obesity, drugs, alcohol or educational underperformance unless we help families to do their great work.” Shadow Chancellor George Osborne last night praised his boss over the film. On the BBC’s Question Time he said: “There is massive public interest in the leader of the Opposition.”
Labels: Cerebral Palsy, Cystic fibrosis, David Cameron, dignity, Disability, epilepsy, The skies the limit