IPF Idiopathic Pulmonary Fibrosis

damn! – I was just getting the hang of being happy!


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PLEASE ask UK govt to help save the lives of the 5,000 UK citizens who die every year

Updated 13th Dec 2014

PULMONARY FIBROSIS, ‘IPF’, THE ‘NEW’ disease killing thousands every year

PLEASE ask UK govt to stop the neglect.  – Some IPF patients say; ‘I wish I had cancer instead’.

UK newspaper overview of IPF – as a patient’s story – HERE  

INTRO: Miraculous work is done by the NHS every day but not if you have IPF.  IPF – idiopathic pulmonary fibrosis – is an incurable lung disease that results in progressive lack of oxygen, which in turn causes general organ failure & death.  IPF is listed as an autoimmune disease.  It isn’t contagious.   There is no cure.

With IPF according to my consultant, you die, in the UK, on average 33 months from diagnosis.  Some die earlier than that, some die less, quickly.  33 months is the median.

15,000 have the disease in the UK.  5,000 die every year. More than 5,000 cases replace those who die.

THE UK GOVT ISN’T TAKING EFFECTIVE ACTION.  Compare the 5,000 deaths to road deaths which have fallen from around 5,500 per year in mid 1980s to 1,754 in 2012.   IPF deaths just go up steadily up.

Whatever the actions were for road safety we IPF patients want a similar level of action for IPF sufferers.

NO  SUPPORT – MONETARY SUPPORT FOR CANCER PATIENTS – frequently a great deal – see HERE – MONETARY SUPPORT FOR IPF PATIENTS – little or next to nothing.

SOME MORE FACTS ABOUT THE GOVERNMENT’S NEGLECT

IPF Idiopathic Pulmonary fibrosis kills 5,000 people each year – that’s more than leukaemia.

UK research spend on IPF is only £600 thousand.  On leukaemia alone in UK = £ 32 million.   £521 million on cancer as a whole in 2013 – (Cancer Research UK, 2013).

Mortality rates for leukaemia have fallen by almost a fifth in the last 40 years, but increased 600% for IPF

With IPF increasing by more than 5% a year it could be just a few years before you or someone in your family will have it!

Dr Toby Maher, IPF Consultant at Brompton Hospital points out in his BBC article;

‘To the terminally ill patients I have met, and the grieving loved ones have left behind, IPF is every bit as devastating as any cancer.’

Unlike for cancer, there are an inherent lack of integrated services, no Strategic Clinical Network for respiratory diseases, and currently no approved quality standards.

An “urgent” referral for an IPF patient can take months – for cancer, the vast majority are seen within two weeks.

As a result, IPF patients often endure delayed diagnosis, inconsistent care, limited or inadequate information concerning their disease, limited treatment options & a lack of end-of-life palliative care.

Awareness is also far lower: most of you will have heard of leukaemia, but many even within the medical community have never heard of IPF.’

MISDIAGNOSIS: See HERE for examples

PLEASE HELP NOW:  It is time the UK government acted appropriately for this group of ‘forgotten’ patients

Please ask your MP to get the Govt moving to help save or improve the lives of 15,000 UK citizens.

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