Jamie Parker's fight for £30,000 operation
JAMIE Parker wants to be able to walk again. He wants to be able to run and play with his friends and ride a bike.
But the six-year-old cannot do that because he has cerebral palsy and spends most of his time in a wheelchair.
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HOPEFUL: Jamie Parker, six, of Ash Close, Lydney, suffers from cerebral palsy and needs an operation and physiotherapy which will cost £30,000. His father Andy Parker along with other family and friends are starting fundraising.
This could be changed, however, if Jamie has a complicated and risky operation which involves surgery close to his spine, testing the nerves and cutting away those not doing their job properly.
However, there is no blanket coverage of the dorsal rhizotomy surgery by the NHS, which means his parents have to pay for it privately in order to see their boy walk again without the spasms which hamper his movements.
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Jamie was diagnosed with cerebral palsy when he was just 18 months old, a result of him being starved of oxygen either while in the womb or when he was born. The operation to resolve his problems will cost £22,000 at Frenchay Hospital in Bristol – and there is an 18-month waiting list. It will also involve £8,000-worth of physiotherapy.
Dad Andy, who runs a pet shop in Lydney, said: "The NHS will pay for expensive short-term solutions, like Botox to relax his muscles and orthopaedic surgery.
"But sadly the selective dorsal rhizotomy surgery he needs to stop the effects of the cerebral palsy is not covered.
"I am told it will be within five years or so but unfortunately he has to have the surgery as soon as possible because of his age. The surgeon is going to apply for emergency funding through the NHS but he said he is not hopeful.
"Without the operation, Jamie's mobility will deteriorate and the great likelihood is that he will end up wheelchair-bound having to undergo many painful operations on his hips, knees, spine and ankles."
Andy and Jamie's mum Louise, are separately trying to raise some cash to fund the operation by doing skydives and running the length of the country in a relay. They have set up a Just Giving page, www.justgiving.com/Andrew-Parker10 which will direct all money raised to Tree Of Hope Children's Charity. The charity will then use the money to pay for the operation.
Medical director for NHS Gloucestershire, Dr Liz Mearns, said: "NHS Gloucestershire is committed to achieving the best possible health outcomes for all its patients. Cases such as these are complex, and we have to take into account both the current clinical evidence available and individual circumstances. It is understandable that parents and families want the best for their children and loved ones and we respect their wish to pursue all potential options to secure funding for treatments.
"This procedure is not routinely funded by NHS organisations, but there is a process to allow individual funding requests to be looked into to determine if there are exceptional circumstances."
Comments
by Justica
Monday, October 15 2012, 11:02PM
“This family shouldn't have to fund raise for this money. They are BRITISH citizens and young Jamie should be treated under the NHS.”
by raidermanuk
Monday, October 15 2012, 10:55PM
“TimMessanger
You tell people the facts - but they don't want to read the facts. An inconvenient truth!”
by TimMessanger
Monday, October 15 2012, 5:04PM
“Spindles12 by registering with a doctor you are not entitled to "free" hospital treatment and some NHS authorities are doing a better job than other for charging for treatment. BUT "They could do better"
Also the treatment of cp with selective dorsal rhizotomy surgery appears to work best with extreme cases and milder cases it is very questionable.
Selective dorsal rhizotomy: efficacy and safety in an investigator-masked randomized clinical trial
http://tinyurl.com/c6wgqwp”
by Dr_Hfrrrrr
Monday, October 15 2012, 8:56AM
“'it doesn't even look as if we can blame the EU on this one but I expect they are behind it somehow'. Yeah, them and the Jews, the Illuminati, the Masons...”
by SandraPee
Monday, October 15 2012, 8:55AM
“spindles12 . Excellent comment . I think you speak for the vast majority of the people .”
by spindles12
Monday, October 15 2012, 7:59AM
“It is so wrong that people who have lived in this country all their lives and need treatment that will completely change their lives are being made to wait or scrape up thousands of pounds to pay for treatment, especially when we are now reading the latest order from the NHS:- "Health tourists must be given free treatment by GPs because it is their human right.
New guidelines tell doctors across England they must register any foreign patient who asks for care otherwise it would be 'discriminatory'. These include asylum seekers, overseas students or tourists coming for a short holiday. Once registered, they will be entitled to the same NHS care as all other patients and can receive free blood tests, jabs and – in some cases – free prescription drugs".
What about the human rights of people who are desperate for treatment, don't they count any more? What the heck is going on when money that should be spent on legitimate UK patients who are in real need is being spent on any chancer who comes over here and jumps the queue? It's about time there was a revolution when people say "enough is enough". It doesn't even look as if we can blame the EU on this one but I expect they are behind it somehow. The rights of the British people are rapidly being eroded away which makes it look like everyone is entitled to anything in this country except the people who actually live here.”