Urgent Referral to Transplant Team for those Diagnosed with Idiopathic Pulmonary Fibrosis
Idiopathic Pulmonary Fibrosis is a chronic condition which results in scarring of the lung tissue reducing the gaseous exchange ability of the lung and thus as the disease progresses quality of life decreases.
Currently there is no known cause of Pulmonary fibrosis however it is accepted that idiopathic Pulmonary fibrosis is the most severe form of pulmonary fibrosis, with a life expectancy median of between two to five years after diagnosis
There are two drugs that MAY- JUST MAY, slow it but these are not without side effects and these for many patients are so severe they simply stop. The only hope for these patients is a lung transplant.
Current guidelines are you "need to be sick enough to need it, well enough to survive it". I think we can do better than that. It is accepted not everyone will be eligible for transplant and not everyone with IPF wants one, but none-the-less, I urge the Government and National Health Service to review this guideline so as patients with IPF can be referred upon diagnosis given life expectancy is so short and the rate of progression variable.
CASE STUDY
My aunt was diagnosed at 56- she was dead by 58. 2 years and 2 months after diagnosis. She died, not waiting for transplant but whilst being assessed for it. There is no excuse for leaving it so late in any patient.
I urge you to please give me you signature as I lobby for this important change so as we can reduce the number of people with IPF being left too long prior to being considered.
Many thanks,
R. MacDonald,
Cert Man Care (Open), Cert PPH (Open), BSc (Hons), PGCert (GCU, UWS & Gla), LLB (Hons)
Updates
October 23, 2024
The stories coming in from you all show that waiting until a patient is too sick to recover is a fatal policy failure. I am currently drafting a formal briefing for the NHS leadership to demand earlier referral windows. Post this link on your Facebook page and text three friends who need to know why current guidelines are failing.
October 23, 2024
The momentum behind this push proves that people understand the urgency of early referrals for those with IPF. Post the petition link to your Facebook page right now and email your local representative to demand this policy change.
8 Comments
My age doesn't allow me to have a transplant, but I feel strongly that everyone should be considered early diagnosis.
My dad died of ipf in March 24, his referral came to late as my dad deteriorated quickly in the last 5 months of his life, if my dad had been referred in October 21 when he was diagnosed he would have had a chance and not have lost his life at the young age of 60, especially as he was so strong and fit with no other health conditions other than ipf. I hope this petition will help other sufferers be given a chance to be evaluated for transplant early on in there diagnosis regardless of lung function when diagnosed as this disease is so unpredictable in stability.
Such a cruel disease
Definitely referral is too late Early diagnosis and treatment is also urgent ! More awareness is needed urgently
To many lovely people die with this horrible illness
Glad to assist :-)
Best of luck!!
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Urgent Referral to Transplant Team for those Diagnosed with Idiopathic Pulmonary Fibrosis
Idiopathic Pulmonary Fibrosis is a chronic condition which results in scarring of the lung tissue reducing the gaseous exchange ability of the lung and thus as the disease progresses quality of life decreases.
Currently there is no known cause of Pulmonary fibrosis however it is accepted that idiopathic Pulmonary fibrosis is the most severe form of pulmonary fibrosis, with a life expectancy median of between two to five years after diagnosis
There are two drugs that MAY- JUST MAY, slow it but these are not without side effects and these for many patients are so severe they simply stop. The only hope for these patients is a lung transplant.
Current guidelines are you "need to be sick enough to need it, well enough to survive it". I think we can do better than that. It is accepted not everyone will be eligible for transplant and not everyone with IPF wants one, but none-the-less, I urge the Government and National Health Service to review this guideline so as patients with IPF can be referred upon diagnosis given life expectancy is so short and the rate of progression variable.
CASE STUDY
My aunt was diagnosed at 56- she was dead by 58. 2 years and 2 months after diagnosis. She died, not waiting for transplant but whilst being assessed for it. There is no excuse for leaving it so late in any patient.
I urge you to please give me you signature as I lobby for this important change so as we can reduce the number of people with IPF being left too long prior to being considered.
Many thanks,
R. MacDonald,
Cert Man Care (Open), Cert PPH (Open), BSc (Hons), PGCert (GCU, UWS & Gla), LLB (Hons)
Updates
October 23, 2024
The stories coming in from you all show that waiting until a patient is too sick to recover is a fatal policy failure. I am currently drafting a formal briefing for the NHS leadership to demand earlier referral windows. Post this link on your Facebook page and text three friends who need to know why current guidelines are failing.
October 23, 2024
The momentum behind this push proves that people understand the urgency of early referrals for those with IPF. Post the petition link to your Facebook page right now and email your local representative to demand this policy change.
8 Comments
I was diagnosed with IPF aged 66 in April 2023 - the clock is ticking! Lung transplant has NEVER been mentioned in any of my consultations, whether it be to ask me if I would like one if it was available, or indeed to inform me I would not be suitable and why. Just NOT discussed at all :(
My age doesn't allow me to have a transplant, but I feel strongly that everyone should be considered early diagnosis.
My dad died of ipf in March 24, his referral came to late as my dad deteriorated quickly in the last 5 months of his life, if my dad had been referred in October 21 when he was diagnosed he would have had a chance and not have lost his life at the young age of 60, especially as he was so strong and fit with no other health conditions other than ipf. I hope this petition will help other sufferers be given a chance to be evaluated for transplant early on in there diagnosis regardless of lung function when diagnosed as this disease is so unpredictable in stability.
Such a cruel disease
Definitely referral is too late Early diagnosis and treatment is also urgent ! More awareness is needed urgently
To many lovely people die with this horrible illness
Glad to assist :-)
Best of luck!!
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I was diagnosed with IPF aged 66 in April 2023 - the clock is ticking! Lung transplant has NEVER been mentioned in any of my consultations, whether it be to ask me if I would like one if it was available, or indeed to inform me I would not be suitable and why. Just NOT discussed at all :(