Our son Jake is 13. He suffers from a rare genetic progessive disorder, Leigh's Syndrome. It has paralysed him and left him in a wheelchair. He is in constant pain from muscular spasms. His drugs don't work like they used to and he has a dislocated hip and ankle. His highly experienced consultant wants him to have an operation to help him suffer less pain. It's an exceptional operation - not the norm but his consultant and doctors think it is worth trying.
On the 26th Febuary 2014 a committee sat and decided to deny an Individual Funding Request of £9828.00. The principle reason they gave were all economic. They amounted to arguements that "others will want it" and "policy on expenditure will need to be changed at a national level." We wonder they have looked at his life expentancy and don't think it's worth the investment.
There is not much else that can be done. We could lose Jake like we lost his brother Robert. But as his parents we will move heaven and earth to make sure he has as painfree a time whilst he is with us. He has suffered enough.
Meanwhile, the NHS will go on funding boob jobs, highly paid management consultants and hundreds of thousands in payouts to managers they make redundant only to rehire a few weeks later. In comparison, Jake's Individual Funding Request is a drop in the ocean.
If you think the NHS needs to prioritise patients in its budget setting and reconsider the pallative care investment for Jake, please sign below and pass this on as widely as you can.
Updates
March 10, 2014
We just hit 100 signatures to get Jake the care he needs. Text this link to three people who will help us demand that the NHS puts patients before bureaucracy.
Reached 250 supporters
March 8, 2014
March 8, 2014
The committee is ignoring our request, so we need to put more pressure on the local commissioning board directly. Email your member of parliament today to demand they look into why patient care is being sacrificed to save money. We will not let them stay silent while Jake continues to suffer.
Reached 100 supporters
March 7, 2014
170 Comments
In the big scheme of things this is peanuts. This is a young boy and deserves to have this small amount spent on him if it will help.
Shame on a system that lets people decide if someone is worthy of something. If the doctor and consultant thinks it will help give it to him.
I have Leigh's as well. Every sufferer is different and should get the treatment they need as a individual. Give this young man the operation he needs to be pain free.
I support my two youngest children have a rare genetic illness called mucolipidosis . So I'm all for supporting jake and he should have the operation .
If a parent promised a child something like this operation, and then took it away TWICE. The parents would be ACCUSED of emotionally abusing the child. So where is the justice here, how can the NHS get away with this......
Hope jake gets his operation.
I testified in a court case recently in which I was the expert witness...they lost on the basis of being a financial decision rather than meeting the needs of the client. I think they will be hard pressed to deny this child. patient rights and needs outweigh the financial implications of an insurance company or healthcare facilities. They have a duty to perform care in the interest of the patient. Good luck and if I can do anything, email me.
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Our son Jake is 13. He suffers from a rare genetic progessive disorder, Leigh's Syndrome. It has paralysed him and left him in a wheelchair. He is in constant pain from muscular spasms. His drugs don't work like they used to and he has a dislocated hip and ankle. His highly experienced consultant wants him to have an operation to help him suffer less pain. It's an exceptional operation - not the norm but his consultant and doctors think it is worth trying.
On the 26th Febuary 2014 a committee sat and decided to deny an Individual Funding Request of £9828.00. The principle reason they gave were all economic. They amounted to arguements that "others will want it" and "policy on expenditure will need to be changed at a national level." We wonder they have looked at his life expentancy and don't think it's worth the investment.
There is not much else that can be done. We could lose Jake like we lost his brother Robert. But as his parents we will move heaven and earth to make sure he has as painfree a time whilst he is with us. He has suffered enough.
Meanwhile, the NHS will go on funding boob jobs, highly paid management consultants and hundreds of thousands in payouts to managers they make redundant only to rehire a few weeks later. In comparison, Jake's Individual Funding Request is a drop in the ocean.
If you think the NHS needs to prioritise patients in its budget setting and reconsider the pallative care investment for Jake, please sign below and pass this on as widely as you can.
Updates
March 10, 2014
We just hit 100 signatures to get Jake the care he needs. Text this link to three people who will help us demand that the NHS puts patients before bureaucracy.
Reached 250 supporters
March 8, 2014
March 8, 2014
The committee is ignoring our request, so we need to put more pressure on the local commissioning board directly. Email your member of parliament today to demand they look into why patient care is being sacrificed to save money. We will not let them stay silent while Jake continues to suffer.
Reached 100 supporters
March 7, 2014
170 Comments
Having to fight for the right to have an operation to ease his pain is not and should not be decided by budget ! Sadly , despite the breakthrough in medicine, technology and skill in performing such operations , it is a shame they cannot use intelligence when budgeting which results in innocent children being denied a chance to live in a less painful way .
In the big scheme of things this is peanuts. This is a young boy and deserves to have this small amount spent on him if it will help.
Shame on a system that lets people decide if someone is worthy of something. If the doctor and consultant thinks it will help give it to him.
I have Leigh's as well. Every sufferer is different and should get the treatment they need as a individual. Give this young man the operation he needs to be pain free.
I support my two youngest children have a rare genetic illness called mucolipidosis . So I'm all for supporting jake and he should have the operation .
If a parent promised a child something like this operation, and then took it away TWICE. The parents would be ACCUSED of emotionally abusing the child. So where is the justice here, how can the NHS get away with this......
Hope jake gets his operation.
I testified in a court case recently in which I was the expert witness...they lost on the basis of being a financial decision rather than meeting the needs of the client. I think they will be hard pressed to deny this child. patient rights and needs outweigh the financial implications of an insurance company or healthcare facilities. They have a duty to perform care in the interest of the patient. Good luck and if I can do anything, email me.
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Having to fight for the right to have an operation to ease his pain is not and should not be decided by budget ! Sadly , despite the breakthrough in medicine, technology and skill in performing such operations , it is a shame they cannot use intelligence when budgeting which results in innocent children being denied a chance to live in a less painful way .