Parents of children with cerebral palsy forking out thousands for private therapy

Cerebral palsy is a group of lifelong conditions affecting movement and co-ordination, caused by a problem with the brain which occurs before, during or soon after birth.

Quadriplegic cerebral palsy is the condition in its most severe form, with children often left immobile and unable to speak.

It is widely accepted that for these youngsters, early intervention with speech and physiotherapy is key to improving their development.

But figures show hundreds of children are being left without speech and language or physiotherapy in Colchester and Tendring.

Parents of children with quadriplegic cerebral palsy have told how they have had to fight to secure even one session of physiotherapy per month on the NHS with many having to pay for private treatment.

Brenda Tidmarsh, from Kirby-le-Soken, who is the grandmother and carer to eight-year-old Leon Johnson says her grandson has received no physiotherapy since the summer.

“I can’t remember the last time he had non-private physiotherapy,” she said.

“I have to have an argument with them all the time.

“He’s had one session in nearly four months. I pay £70 an hour for private physio.

“Every week we used to take him to Kids Physio and were paying £74 an hour.

“It is frustrating because you have to rely on charity to help pay for the things he needs.”

Leon, who goes to special needs school Market Field, in Elmstead Market, can walk with the aid of a frame.

“What he needs is consistent therapy, someone coming out at least once a week to see him,” said Brenda.

“It was said that Leon would never talk but now he is in a choir – he sings and he talks.

“I helped him to get to that point mostly by myself, he used to go to speech therapy but that was mainly to help him swallow.

“When you have a child who has cerebral palsy, the first and foremost person in their life should be the physio to get the muscles working.”

Emily Sinclair, from Weeley, mother to Alexia, six, said she has fought to secure physiotherapy.

While eternally grateful to the NHS for saving Alexia’s life with an operation, she fears the funding and support is not in place to help children with cerebral palsy.

“I have had a physio come round and they ended up leaving in tears, saying they can’t help children to nearly the extent they need,” she said.

“She said she had 225 children on her books and should have 95.

“Alexia has never had one physio session a month on the NHS.

“They are under massive stress, the funding isn’t there and children are not getting the things they need.

“We fundraise, as do so many parents of children with cerebral palsy, to take her to America for an operation and to pay privately for physio.

“The sad thing is when I see parents who don’t fundraise to get the right physio for their children because they don’t want to ask for help.

“I can see now children with cerebral palsy being overtaken by Alexia, children who aren’t getting the physio they need, and it breaks my heart.”

Thousands of pounds have been raised to pay for private treatment for Alexia.

Emily added: “Alexia has improved to the point the only thing she is struggling with is her core strength.

“She has improved greatly, she used to talk and no-one would understand her. Our physio used to say once her body is stronger people would start to understand her and it’s true, she can communicate now.

“She has started to use her hands, arms and legs which aren’t as stiff or stuck.

"She can now walk with the aid of a frame.

“If children don’t get the therapy they need, they will start getting painful contractions, their legs will bend and get stuck.

“If left, Alexia would have been having these contractions, she wouldn’t be able to do anything and instead she has had constant physiotherapy which has taken away her pain.

“She had an operation a couple of months ago and I never heard from them about physio. I said she needs some sort of intervention and I got them to come see her and was able to book her in for three sessions over three months.”

Two-year-old Angus Grocott was born in the fast lane of the A120 and was starved of oxygen, leaving him fighting quadriplegic cerebral palsy.

His parents, from Little Bentley, have raised tens of thousands of pounds to take their son to the United States and Canada for therapy sessions.

Dad David said Angus was not receiving therapy on the NHS.

“Angus has been visited by physio and speech practitioners but has received no actual NHS therapy in months,” he said.

“Meanwhile he remains with quadriplegic cerebral palsy and cannot sit or roll.

“The only physio he receives is funded through our fundraising.

“We understand almost all the paediatric physios are on maternity leave but they won’t get maternity covers. It means that for the time being the usually woeful service is now non-existent.”

He added: “Another family from Colchester we are in touch with believes they are normalising the family fundraising model.

“Our personal initiative is no excuse for outrageously poor services. It just isn’t right."

Toby Wheeler, 25, from Stanway, has faced severe quadriplegic cerebral palsy since he was left brain-damaged following his birth at Colchester Hospital.

He requires around the clock care and his carer Harriet Renolds, who has looked after Toby for seven years, said he didn’t receive the early intervention he needed.

She said Toby currently pays for his therapy privately.

“Toby started walking after the age of 20, if he had had earlier intervention, who knows how much further he could have come by this stage of his life,” she said.

“It is well-known that early intervention with physio is absolutely key."

There is £1.5 million for child therapies in north east Essex

Therapies for children are provided by Anglian Community Enterprise on behalf of North East Essex Clinical Commissioning Group.

The CCG has a budget of £1.586 million for the provision of paediatric therapy services, including speech, language and physiotherapy.

There are 190 children on the waiting list for speech and language therapy in north east Essex and 197 on the waiting list for physiotherapy.

There are 1,822 children on its books receiving speech and language therapy and 983 receiving physiotherapy.

To those children, the CCG says ACE gives 465 hours for the provision of speech and language therapy per week and 241 hours of physiotherapy per week.

However, a spokesman said these hours include factors such as travel time, and not just clinical time spent with the patient.

He added some children would be provided with more therapy than others, with provision based on assessed need.

Pam Green, chief operating officer for the NHS North East Essex Clinical Commissioning Group, met with the family of Angus Grocott to “better understand” his needs and discuss their concerns.

She said: “We have had feedback from a number of families relating to children’s therapy services and along with our providers ACE we are working through the issues that have been raised to see how we can better support them.

“We strive to commission the very best care and support for each child based on their individual needs and are sorry that this is not always meeting expectations at this time.

“Our provider ACE has to assess the needs of each child and work with their parents or carers to agree the type of care they are able to provide.

“The needs of each child are assessed individually and the amount of time, support and therapy provided to them will depend entirely on those needs.

“We don’t allocate a fixed amount of money to each child because their needs vary so much.

“The waiting list consists of children who have only just been referred to them and others whose parents have specifically asked that they wait a few weeks or even months before allocating them an appointment to meet because they have so much else going on.

“We are also working with ACE to see what additional support we can provide to our paediatric therapy team during a particularly challenging time."

The CCG had previously said four paediatric physiotherapists were on maternity leave.