A forum for family, friends and carers of pancreatic cancer patients

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Debbiergn
Posts: 2
Joined: Thu Aug 13, 2020 6:23 pm

Frustrations about decisions

Postby Debbiergn » Mon Aug 17, 2020 10:21 am

Dad was diagnosed with suspected T2N1Mo Pancreatic Cancer on 4th August after CT scan on 20th July and severe Jaundice for a month prior. He has since had a Stent fitted under ERCP. He has been referred to Regional Centre for MDT to query surgery. He has now been advised to also have EUS as biopsies were not taken during ERCP due to delay in response from regional centre. He now has an Appointment at Regional Centre on 7th Sept.
My query and frustrations are that it appears only due to my dogged determination in chasing information (I am a District Nurse) that anything is being done. I have questioned that CT to MDT is 7 weeks and was advised this is due to Consultant being on AL for 3 weeks and also due to Covid delays. The CNS even had the audacity to say my Dad is lucky not to have been diagnosed 3 months ago as they wouldn't have done any investigations !. To also add insult to injury for a very sick man, he has to travel 90 minutes each way for this second procedure and was requested to have a Covid test at that hospital as our local one was full...
My Dad and I feel that there is a lack of communication and any resemblance of joined up care or a plan. As a Nurse I find this super frustrating and adds to the distress and horror of the diagnosis and what the future may hold.
The CNS at both hospitals are very patronising, especially when we question or challenge any information we dont understand.
Are there National timescales /care plans ? As the NICE guidelines dont really specify.
Any support gratefully received.

PCUK Nurse Rachel R
Posts: 82
Joined: Thu Jan 25, 2018 10:52 am

Re: Frustrations about decisions

Postby PCUK Nurse Rachel R » Mon Aug 17, 2020 4:12 pm

Hi Debbiergn,

It's Rachel here, one of the nurses. A big welcome to the forum although I know it's not a place you would hope to be. I'm really sorry to hear about your Dad's diagnosis and also about the difficulties and delays you've experienced. I can only imagine how hard things are currently for you as you continue to do all you can in moving along Dad's pathway.

There are cancer wait times targets that Trusts are measured against. We know that many Trusts have not been meeting these for a while and there is also the impact of Covid-19, not that this means this is right.

I wonder if you would be happy to give us a call or contact us via email and we can discuss this more. I hope others too will comment.

Hope to be in touch soon, our contact details are below.

Rachel

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Jess
Posts: 9
Joined: Wed Aug 12, 2020 3:05 pm

Re: Frustrations about decisions

Postby Jess » Tue Sep 01, 2020 8:21 am

I hope things are moving along for you.. In my experience. Push and phone and be a complete pest.. Dont worry about being a nuisance... Its the only way to get action... Im not a pushy person by nature... But I've had to fight for my husband from diagnosis of pancreatitis... To finding a mass and having it removed... The system is flawed and made worse with covid... If you have this awful disease.. You need someone in your corner fighting for you... That has been my experience so far.. Wishing you the very best. Jess

Debbiergn
Posts: 2
Joined: Thu Aug 13, 2020 6:23 pm

Re: Frustrations about decisions

Postby Debbiergn » Tue Sep 01, 2020 1:16 pm

Thanks Jess, things have moved along a little, we have appointment with specialist next week to discuss possible Whipples. This is after constant phone calls and tears. Dad even go to the point where he said he can see why some people just give up and refuse treatments !. Fingers crossed that surgery can go ahead.