failing NHS. Withdrawing treatment

[shippy]

http://www.dailymail.co.uk/health/ar...-decision.html


This is a shocking piece of news...

Money was spent on keeping Venables in a safe comfortable lifestyle , but money for helping these two little children live a little longer has been denied...its ruddy shocking...

Does anyone know if there is a petition to sign against this decision...unbelievable

[Graeme1978]

http://www.dailymail.co.uk/health/ar...-decision.html


This is a shocking piece of news...

Money was spent on keeping Venables in a safe comfortable lifestyle , but money for helping these two little children live a little longer has been denied...its ruddy shocking...

Does anyone know if there is a petition to sign against this decision...unbelievable

It's a heartbreaking story, but I must ask where do you draw the line? How much is too much for medication which has only been shown to slow the effects short term, with no long term data available?

[Albion102]

http://www.dailymail.co.uk/health/ar...-decision.html


This is a shocking piece of news...

Money was spent on keeping Venables in a safe comfortable lifestyle , but money for helping these two little children live a little longer has been denied...its ruddy shocking...

Does anyone know if there is a petition to sign against this decision...unbelievable

The treatment costs £500k per year and there is no evidence for its long term effectiveness. As Graeme says - "where do you draw the line ?".

It is a completely spurious argument to cite Venables. Undoubtedly a costly regime, but one which seems to have worked for Thompson. The alternatives would have been either to let him loose in society and free to cause harm, or to execute him. It costs California nearly $300m per execution.

[bambi275]

Shippy - here is the link for the petition https://www.change.org/p/nhs-england...share_petition

It is such a difficult decision. £500k per year per patient is a lot of money especially as their life expectancy is age 12 at the most, however, it's not that long ago the babies born with Down syndrome were given a short life expectancy and the NHS refused to spend money on heart operations that many needed due to a complication of Down syndrome but these children are now living into their 50's, 60's and beyond. The life expectancy of these children will never be extended if the opportunity is never presented.

[Hamble]

The difference is these children have a genetic degenerative condition
leading to a poor quality of life and prolonged suffering.

I believe the treatment was a drug trial that will not be continued on the nhs.

The publicity and petition is good.
The only hope now is a wealthy benefactor willing to provide funds to
pay for the treatment for the sake of the parents who believe that during the trial both children's health improved.

[bambi275]

Hamble- if you read the information that is with the petition then you will see that this drug is available to patients in Europe and that it has helped slow down the disease in some children and others have had their condition stabilised by the drug.
Most people who have had a stroke are considered as having a poor quality of life and prolonged suffering - should we withdraw treatment and therapy for illnesses such as this too?

[shippy]

The treatment costs £500k per year and there is no evidence for its long term effectiveness. As Graeme says - "where do you draw the line ?".

It is a completely spurious argument to cite Venables. Undoubtedly a costly regime, but one which seems to have worked for Thompson. The alternatives would have been either to let him loose in society and free to cause harm, or to execute him. It costs California nearly $300m per execution.

So do you think that people with terminal cancer and a short time to live should have their treatment withdraw as it's not cost effective and they will eventually die anyway ?

Regarding Thompson not offending...who knows ?...maybe he just hasn't been caught..its still costing the tax payer an arm and a leg monitoring him...

If there is money for these murderers, then there should be funds available for these two little children to live the few years they have left to live...

[shippy]

Shippy - here is the link for the petition https://www.change.org/p/nhs-england...share_petition

It is such a difficult decision. £500k per year per patient is a lot of money especially as their life expectancy is age 12 at the most, however, it's not that long ago the babies born with Down syndrome were given a short life expectancy and the NHS refused to spend money on heart operations that many needed due to a complication of Down syndrome but these children are now living into their 50's, 60's and beyond. The life expectancy of these children will never be extended if the opportunity is never presented.

Thanks Bambi...much appreciated..its really heartbreaking isn't it...?

[Hamble]

Hamble- if you read the information that is with the petition then you will see that this drug is available to patients in Europe and that it has helped slow down the disease in some children and others have had their condition stabilised by the drug.
Most people who have had a stroke are considered as having a poor quality of life and prolonged suffering - should we withdraw treatment and therapy for illnesses such as this too?

I understand that the drug is approved for use on Humans in Europe though I am not sure if the cost is free.

Quote
"According to the National Institute of Neurological Disorders and Stroke (2011), Batten disease is an inherited disease of the nervous system. It typically begins in childhood and is fatal. There are four main types of neuronal ceroid lipofuscinoses; congenital, infantile, late infantile and adult. The late infantile type begins between ages 2 and 4 years of age. Early signs typically include loss of muscle coordination and drug-resistant seizures. This form progresses rapidly and death usually occurs between 8 and 12 years of age. Batten disease and other forms of neuronal ceroid lipofuscinoses are rare, occurring in an estimated 2 to 4 in 100,000 live births annually.

Cerliponase alfa is an infusion administered into the cerebrospinal fluid by way of a surgically implanted reservoir and catheter (an intraventricular access device). Cerliponase alfa is contraindicated if there are intraventricular access device complications such as leakage, device failure, or device-related infection or if the individual has ventriculoperitoneal shunts in place.

The most common side effects include fever, electrocardiogram abnormalities, decrease or increase of cerebrospinal fluid protein, vomiting, seizures, hypersensitivity, hematoma, headache, irritability, pleocytosis, device-related infection, bradycardia, feeling jittery, and hypotension."


https://www.unicare.com/medicalpolic...pw_c196370.htm

[Albion102]

So do you think that people with terminal cancer and a short time to live should have their treatment withdraw as it's not cost effective and they will eventually die anyway

:

People with terminal cancer diagnoses are subjected to exactly the same rationing of resources based upon the cost per quality adjusted life year. It is a decision taken rney day up and down the country with DNRs and palliative care only regimes.

[seivad]

Hamble- if you read the information that is with the petition then you will see that this drug is available to patients in Europe and that it has helped slow down the disease in some children and others have had their condition stabilised by the drug.
Most people who have had a stroke are considered as having a poor quality of life and prolonged suffering - should we withdraw treatment and therapy for illnesses such as this too?

Apparently it was also approved by the US Food & Drug Administration in April last year. The clinical trials have shown that 87% of the children (20 out of 23) did not decline in motor and language scores. Unfortunately there have also been adverse reactions to the drug in 58% of the children, but that didn't stop them from continuing with the treatment.

As with any new drug, it's a risk, and many of the other dreadful symptoms of this disease will still continue. However I believe that if there's something out there that will help them through what little time they may have left, it should be made available.

[bambi275]

Thanks for the info Seivad, it is an awful dilemma but I read a report earlier that was saying there is not enough long term data on the drug to warrant it's continued use. That's the thing though, they can't get long term data for an illness with a short life expectancy. These children need to be given the opportunity to live longer so that the data can be analysed. As awful as it is these children will basically be guinea pigs for the next generation of children with this disease but so long as they are not suffering anymore than they would already be without any drug therapy then this needs to be given a chance.
Many people prove science and medicine wrong. Steven Hawking was diagnosed with MND aged 21 and was expected to not live 5 years and yet he celebrated his 70th not that long back. To look at him you would think he was suffering and had a poor quality of life and yet he has been married twice, had children and become one of the greatest minds of the last century despite having a degenerative disease http://www.independent.co.uk/news/sc...s-6286313.html

[bambi275]

Oh, and I'm not against science or medicine and I don't live in a world without reality either. I'm currently on my second year of a health science degree and spend a lot of time reading papers, looking at causes of disease, data analysis, clinical trials etc but all this studying convinces me that we know less than we would like to think we do. There is so much in science and medicine that still can't be explained. I'm also a Mum to a daughter who was given a bleak prognosis, although thankfully not as bad as the children involved in this case, and she has exceeded her expectations.

[silver fox]

Particularly were children are involved it is difficult to keep emotions out of decisions, however trotting out insufficient data in long term use is hardly an answer, if that decision remains for all, then we will will never get the data for long term use, the cost factor is also considerable and beyond what the vast majority can possibly afford or raise, the only hope is as part of a clinical trial.

So sad to see the deterioration in the little boy, but heart warming to see the little girl enjoying an apparently fairly normal life, but clearly occupying a great deal of time for the child and parents.

[said]

Oh, and I'm not against science or medicine and I don't live in a world without reality either. I'm currently on my second year of a health science degree and spend a lot of time reading papers, looking at causes of disease, data analysis, clinical trials etc but all this studying convinces me that we know less than we would like to think we do. There is so much in science and medicine that still can't be explained. I'm also a Mum to a daughter who was given a bleak prognosis, although thankfully not as bad as the children involved in this case, and she has exceeded her expectations.

I have looked up the drug and clinical trials - Batten Disease, is as Hamble says, an inherited disease. It occurs when an enzyme is deficient in the CLN2 gene. It is a very rare and fast debilitating disease. Cerliponase alfa was discovered in the US specifically for rare disorders of CLN2. The treatment underwent clinical trials in the US and again in the UK by the NHS. The NHS's findings were that the treatment created a 5% of improvement in the quality of life, and only 4.3% of improvement in mobility. Given the overall disability that the disease creates - this improvement is very slight and compared to the possible side effects the drug produces - it is of little benefit.
It is extremely sad when one hears of children so young suffering in this way - if I could act to bring back the health of every single one, I would do so - but there is little that can be done for these children - there is no cure. The Cerliponase alfa treatment is a tiny beginning. It may slow down the deterioration of the ability to walk - but that is all. The mental deterioration of fits, sight and hearing losses and motor ability in general would not be affected by the treatment.
As For Stephen Hawkins case - there are four types of the motor neurone disease ALS from which he suffers. The disease is again hereditary, and again affects an enzyme in the genes - but Hawkins was first diagnosed when he was 21 years of age which is late for the form that he is suffering from, but far earlier than the more aggressive forms of the disease. Generally those who are diagnosed around 50 years of age only live for approximately five years, as the disease progresses it affects the respiratory organs. Although Hawkins has suffered muscular deterioration, neither his respiratory system, nor his swallowing ability has been affected.