November has been an emotional month. Throughout November, we share a pancreatitis story a day for our Kranky Panky Pancreatitis Awareness Campaign. At the end of November, we have 30 heart-felt stories from families who have experienced pancreatitis and lost loved ones to pancreatitis.
We all have a pancreas, but few of us know what it is, or that it can backfire with disastrous consequences. People are suffering. People are dying. All because of a lack of knowledge about our guts.
How we’ll use your donations:
Guts UK wants to use your kind donations to fund a Pancreatitis Priority Setting Partnership (Pancreatitis PSP). This would enable clinicians, patients and carers (in huge numbers) to work together, prioritising areas of uncertainty in pancreatitis that could be answered by research. This has never before been done for pancreatitis. We know it could change the landscape for pancreatitis completely.
“Being in so much pain and seeing your loved ones struggle to cope around you is something that you never forget.It will stay ingrained in my mind, but there is hope.
In each follow-up appointment with my consultant, he reminds me that I had one of the worst cases of severe acute pancreatitis he had ever seen. But in the same breath, he tells me about how remarkable my recovery has been”
– Ian, sharing his experience with severe acute pancreatitis
“My 26 year old daughter suffered a cardiac arrest as a result of pancreatitis. Despite several rounds of CPR, which I couldn’t bear to watch, she sadly died. Her last words to me before she was put on the ventilator were ‘I’m scared Mum’. I hope that in sharing Jess’ story, we can help Guts UK raise funds for research into pancreatitis and hope that families reading this will feel a little bit less alone”
– Jane, sharing her daughter Jess’ story
> Tell me more about a Pancreatitis PSP
With your help, we can fund a Pancreatitis Priority Setting Partnership for chronic and acute pancreatitis in adults and children. Here’s what would happen:
The PSP would bring pancreatitis patients, carers and clinicians together on equal footing and with equal voice.
Together, we would identify questions that research hasn’t already answered, which are important to all groups.
Once we’ve identified which questions haven’t been answered by research, we will all work together to jointly prioritise these uncertainties.
Then, we will produce a final list of agreed research priorities, publicise these widely and make sure researchers and research funders can access these.
The value in a PSP truly comes from you – the patients and carers. Doctors, nurses, surgeons, dietitians and scientists offer their life’s work to pancreatitis, but patients offer a life-time of experience. You offer first-hand, lived experience of pancreatitis and YOU can be involved in the PSP.
Thousands of patients will be able to submit their questions and concerns, all to be reviewed by the expert panel (which also includes patients). These priorities will allow Guts UK to maximise the benefit of the research we fund for people with pancreatitis.
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