Why won’t they help our daughter to walk Girl, 3, with cerebral palsy refused treatment available at local hospitalEvie Tucker cannot walk unaided because of condition
Local NHS refuses life-changing treatment and family face 23,000 bill
A three-year-old girl has been refused life-changing treatment on the NHS, leaving her family outraged.
Evie Tucker is unable to walk unaided as she was diagnosed at birth with cerebral palsy, a neurological condition which causes problems with movement and coordination.
In a bid to help their daughter, Evie's parents applied for corrective surgery, but healthcare bosses have refused to fund the 23,000 operation, available just miles away at a local hospital.
Evie Tucker, aged three, has been refused life-changing treatment on the NHS leaving her family outraged
The Tuckers are now desperately trying to raise funds for the operation, known as a selective dorsal rhizotomy, which could see Evie walk for the first time.
Her mother Karissa Skidmore, 28, from Avonmouth, Bristol, said: 'Without the surgery she will not be able to walk by herself.
'She has a walker, which she probably manages about ten steps with before she gets really tired so mainly she crawls around.'
'I want Evie to have the
surgery as close to her fourth birthday in March as possible as she is
not at school yet and it will not interfere with that.
Evie can only manage a few steps with the aid of a walking frame
'I can see in her face how frustrated she gets at
not being able to join in with her friends walking and dancing and will
make a difference to all of us as a family.'
Evie was delivered ten weeks early after her mother suffered a fall.
She spent her first seven weeks
in the neonatal intensive care unit at Southmead Hospital, Bristol,
where brain scans revealed that she had cerebral palsy.
While she can do many of the
things that her peers can, she can only crawl or walk a few steps with
the aid of a walking frame.
But her mother came across a new type of surgery which could help her daughter get back on her feet.
The operation involves cutting nerves
in the spinal cord to overcome the tightening of muscles that makes it
difficult for many with cerebral palsy to walk.
Previously the treatment was only available in the U.S. but Ms Skidmore was delighted when she discovered that a local hospital was one of the first to offer the service in the UK. The family applied immediately through their local NHS.
However a funding panel refused the application stating that
Evie’s case was not strong enough.
The family are now facing the challenge of raising the funds themselves.
A letter from NHS Bristol said: 'The
panel agreed that there is a small but significant cohort of patients
who may benefit from this new developing procedure.
HOW CEREBRAL PALSY AFFECTS THE BODY
Cerebral palsy is a general term used by doctors to refer to a set of neurological conditions that affect a child's movement and co-ordination.
Caused by damage to the brain, which normally occurs before, during or soon after birth.
Symptoms vary greatly from child to child – some children have problems walking, while others are profoundly disabled and require lifelong care.
Related conditions or problems, include epilepsy, learning difficulties, hearing impairment, delayed growth and a curved spine
It is not a progressive condition – meaning it will not get worse as a child gets older – however, it can put a great deal of strain on the body, which can cause problems in later life.
There is no cure but a range of treatments can help relieve symptoms.
'They had not been
supplied with sufficient evidence to demonstrate that Miss Tucker has
the potential to benefit over and above other patients with a similar
condition for whom this treatment is also not currently available.'
The family appealed against
the initial decision, but now they are focused on fundraising to pay for
the treatment on a private basis.
Skidmore, who also has a five-month-old son, Jack, with partner Dan
Tucker, added: 'This is a postcode
lottery – they are saying the treatment is not available to other
children but it is to those in other parts of the country.'
Since last May, when the surgery was first introduced at Frenchay Hospital, Bristol, 12 operations have been carried out by consultant neurosurgeon Kristian Aquilina, who learnt the technique at St Louis Children’s Hospital in the U.S.
As the only hospital in the UK currently offering the procedure, referrals have come in from across the country, with most being paid for by the NHS.
A further 14 children have been assessed by Mr Aquilina and had funding refused by their local NHS trust.
A spokesperson for the primary care trust said: 'Unfortunately, the need for healthcare services usually exceeds the resources available.
'We cannot always provide NHS funding for all of the treatments that patients request.'
It is estimated that 1 in every 400 children in the UK is affected by cerebral palsy and 1,800 babies are diagnosed with the condition each year.
To support the family’s fundraising efforts visit www.justgiving.com/ Evieswishtowalk