We just don’t know how they can say no to our children

The operation, called selective dorsal rhizotomy, is available at Frenchay Hospital in Bristol. However, two of the children have been refused the operation on the NHS, and the third’s family are waiting to find out whether he will be accepted.

Their families need to raise approximately £50,000 each for them to have the operation done privately, with some even considering having the surgery carried out in America.

This week, the Adver will be talking to each of the families to find out what they are doing to fundraise, how they feel about being refused treatment on the NHS and how the operation would change their lives.

Six-year-old Alycia Ellis’ mum Natasha, 27, a part time nurse who is also in the RAF and lives in Abbey Meads, talks to health reporter Katie Bond about life with a child who has cerebral palsy

WHEN Alycia was first diagnosed, it was just absolutely mind-numbing, completely boggling...

thinking what on earth we would do, what direction our lives were going to go, where to turn to. We just didn’t have a clue.

At the beginning I couldn’t even watch any videos of children in the same situation or do any research about it. It used to hurt me because I just didn’t know what the outcome was going to be for Alycia, especially when they first told us. She was just so little and didn’t know what was going on, we had no idea if she would ever walk, talk, crawl or anything.

As a parent you try not to assume the worst but when you feel like you’ve got no-one to talk to, especially in the professional industry, it is not great.

We had no answers from the local NHS, nobody seemed to have any answers. It was always ‘maybe this, maybe that’ and unless you start probing them you don’t get anything back.

Being a nurse, I can understand that NHS funding isn’t always available and there has to be a budget, like with everything, but if the operation in America has been a success for so many people in the UK, it is difficult to understand why it is not available to everybody here. And what exactly is the NHS basing decisions on? How do they decide whether or not a child qualifies for the operation? I want to find out what exactly has been said as to why they refuse it.

It is particularly annoying that the one time in our lives we are relying on the NHS for help, we can’t get it. It does aggravate us that there is help out there, but it can’t be given to our daughter in this country.

All of us mothers become so frustrated about it because we just don’t understand how they can say no to our children – no real depth has ever been given to us as to why they feel the operation is not necessary. We are so frustrated and so annoyed as parents.

When Alycia was about two or three, until just about a year ago, she used to suffer with so much pain with her legs, where her body was stretching and growing. She used to cry a lot about her back and legs hurting. If we tried putting her in splints it was so difficult for her, and it was recommended that she wore them for eight hours a day, which is difficult for any child.

The one thing that is disheartening and what we do feel let down by is the physiotherapy they are given. As parents, we are given a list of exercises to do with them, but we aren’t professionals so we could be twisting the wrong muscles and doing more harm than good. That is what we feel really let down about.

It can be hard looking after her, but she is my child and I don’t know any different – I know I have two able-bodied children as well, but I have never seen it as being a hindrance and we don’t get upset about it anymore.

Her sister, Aaliyah, is brilliant with her. I think she realises she needs that extra bit of help , and it’s not like it is a burden for her to help out with little things like toileting that we would all take for granted – Alycia needs someone with her.

For Aaliyah it can become a bit of a hindrance to her if I am busy, so I say ‘It’s your sister, you have to be there for her’ and I can’t fault her for it at all.

If she goes out to play she will always help Alycia and she is very proud of her.

It sounds odd, but in a way I am thankful that my children have grown up having a sister with a disability because they won’t be so naive to the world and they’ll be so much more understanding, as will Alycia.

Alycia does understand about her disability. She doesn’t quite know how she came to have cerebral palsy and she doesn’t understand what exactly it is doing to her body but she knows she has it and she knows her legs are not quite like other children’s, that she needs to work harder and that she needs an operation.

But she is just like any other six-year-old, and a lot of people say that whenever you talk to her she seems so much more grown up in the way she speaks She is a selective mute and it has taken her about a year to talk to her teacher, she just wouldn’t speak.

When I first left her at nursery she would scream the place down – she was used to me giving her all my attention all day, every day, so it was difficult trusting someone else with her for six hours of the day. Even now I don’t trust friends to know how to look after her, I will only leave her with family.

But in the past year, she has got a lot better and she is improving all the time.

It’s amazing that kids these days are so understanding of her disability, although you will occasionally get a child asking ‘why is that girl in a wheelchair?’ Alycia will just turn around and say ‘because I am’ – she has always got a comeback and she has no fear.

We went to Thorpe Park recently and she wanted to go on all the high rides – she loves anything that gives her a bit of a thrill.

We are feeling much more hopeful now about her future than we were at the beginning.

They say the perfect age to have the operation is between the age of seven and 11, so Alycia is at the perfect age.

Robbie’s story

THE Davies family launched their campaign for Robbie in October 2010 when the operation was only available in America.

Their campaign had reached £9,000 when the surgery became available at Frenchay Hospital in May. They stopped fundraising and had an appointment with the neurosurgeon shortly after the hospital started offering the surgery, but were refused funding from NHS Swindon for the £23,000 operation in November.

The family is currently in talks with the NHS to see whether the decision can be reversed.

Robbie’s mum, Kelly, said: “He always says ‘Mummy and Daddy, I get so upset because I can’t walk’. It breaks our hearts.

“The operation would mean everything. It would give him the opportunity to walk and kick a ball like other children.”

Robbie has a 14-year-old sister, Bethany, and 10-year-old twin brother and sister, Nathan and Emily. Emily also has cerebral palsy but it affects her in a different way.

Robbie said: “When they play hide and seek in the house if they go upstairs I can’t go too. I can’t crawl up the stairs and I need an adult to carry me up. I want to run around and trip over.”

Jack’s story

LITTLE Jack Pike is too young for the NHS to say whether they will fund his operation, so the family started fundraising themselves last year. They have raised £17,500 so far and hope to pay for the £23,000 surgery at Bristol themselves if they do not get NHS funding.

Three-year-old Jack, of Penhill, also suffers from epilepsy, an enlarged heart, and has a feeding tube.

Jack’s mother, Kylie, said: “If we have got to pay for it we have started raising money early. Even if we do get the opportunity on the NHS I am hoping the money would pay for the physiotherapy. Whatever is left we would donate to the Cerebral Palsy Foundation.

“We are getting in front now because you never know the outcome of anything – at least we know we have options.

“Jack so wants to play football, he is always outside with his brother. He sits in goal and his brother kicks the ball.

“The tighter his legs go as he is getting older he is walking on his toes more. He is like a ballerina, he walks on top of his toes.”

How the op can help

FRENCHAY Hospital in Bristol became the first hospital in the UK to carry out the pioneering neurosurgical procedure last year.

The hospital has carried out 16 procedures since May, the majority of which were self-funded.

Frenchay has submitted a business case to the commissioners, who will decide whether Swindon’s PCT will start funding SDR operations automatically, rather than on a case by case basis as they do currently.

The technique involves the division of some of the nerves as they enter the spinal cord to free up constricting muscles caused by lower limb spasticity.

If performed early enough, problems related to lower limb spasticity, such as muscle shortening, contractures and abnormal bone growth can be reduced or even eliminated.

Consultant neurosurgeon at Frenchay Hospital, Kristian Aquilina, said: “We have set up a multi-disciplinary team at Frenchay Hospital to evaluate and select children for SDR.

“This team consists of paediatric physiotherapists with special expertise in cerebral palsy, a paediatric neurosurgeon, a paediatric orthopaedic surgeon and a paediatric neurologist. “Our first micro-neurosurgical SDR, also the first in the UK, was performed in Frenchay on May 3. The patient went on to have two weeks of intensive in-patient physiotherapy.

“Children over four years of age, with a diagnosis of spastic diplegia following premature birth, should be considered for SDR.

“Children with typical spastic diplegia, whether born prematurely or at term, should also be considered.

These children tend to have delayed motor development, and spasticity interferes with their progress.”

Timeline of events

• October 2010: Robbie Davies’ family launch their campaign to raise £40,000 for the operation in America
• October 2010: People across the town start holding fundraising events and donating to Robbie’s appeal
• May 2011: Frenchay Hospital launches the operation
• June 2011: After reaching £9,000, Robbie’s family discover the surgery has been launched at Frenchay
• June 2011: Doctors refer Robbie to see the consultant neuroseurgeon at Frenchay
• July 2011: Robbie goes to see the consultant neurosurgeon at Frenchay
• August 2011: Jack Pike’s family launch an appeal to raise funds for the surgery in case the NHS refuses to fund their operation at Frenchay
• November 2011: NHS Swindon refuses to pay for Robbie’s operation and the family launch a petition
• March 2011: Robbie’s family meet with NHS bosses to try and get the decision changed
• March 2011: Frenchay Hospital submits a business plan to the commissioners
• April 2011: Alycia Ellis’ family launch a £50,000 campaign to take her to America for the operation