Total Pancreatectomy

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Janey Dal
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Re: Total Pancreatectomy

Post by Janey Dal » Sun Aug 01, 2021 11:15 am

Hi David

Have you actually seen a pancreatic specialist as yet? Gastro consultants are not always the best option with pancreatitis because it is a very specialised area. Certainly with your diagnosis and your age if you haven't seen a panc specialist yet then you must ask for one. Your GP can refer or your gastro specialist can refer onwards - they are not always keen to do that as it suggests they don't know what to do - professional pride and all that rubbish.

Hugs

Jane xx

DavidC
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Re: Total Pancreatectomy

Post by DavidC » Sun Aug 01, 2021 11:29 am

Hi Jane the panc specialist I've been in contact with has seen me once for an initial outpatients appointment. Requested I had an endoscopy, which was carried out and members of his team have spoken to me over the phone approximately six times in 18 months.

I have never been physically examined by them or had alternative tests carried out.
All in all I feel this care has been pretty poor. As a result, and based on recommendation by a nurse during my last inpatient stay, I'm having a consultation with a specialist at Blackburn.
I did think I was seeing a Pancreas specialist already as they have a dedicated unit including research and training however hindsight tells this has been a waste of 18 months and has caused me a loss of faith in them.
Im hoping Blackburn live up to their reputation and offer much better care.

David

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Janey Dal
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Re: Total Pancreatectomy

Post by Janey Dal » Sat Aug 07, 2021 10:48 am

So disappointing and frustrating for you! Some hospitals have really taken a lend during COVID and seen practically nobody whilst complaining about workload. Intensive care and the COVID wards have been manic but many other specialities have had a very easy 15 months using COVID as the excuse.

I totally agree with you that you need to have faith in your specialist so it's important you find the right one so well done you for being so proactive.

Fingers crossed that this one will be the right one for you.

Hugs

Jane xx

DavidC
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Re: Total Pancreatectomy

Post by DavidC » Sat Aug 07, 2021 4:40 pm

Hi Jane even with a covid backdrop they didn't offer any advice over the last 18 months during telephone consultations. It was a more how are you? and asking the same questions they asked previously, going right back to the start eight years ago.
I prepared a detailed story of symptoms, in-patient stay dates, meds and other health issues when I first saw the consultant but I must have repeated the info every time we spoke.
It was like a fresh consultation or deja vu, every time, as if they had no prior knowledge of my case.

Hardly instils confidence that they know what they are doing.

David

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Janey Dal
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Location: Stockton on Tees, NE UK.

Re: Total Pancreatectomy

Post by Janey Dal » Sat Aug 14, 2021 6:33 pm

Hi David

I absolutely agree with you! Sadly your story is not unusual with pancreatitis. I have been on this forum for more years than I care to think about and it is very common to hear of patients who have had to fight to be heard.

It saddens me but then I suspect that there are many, many other patients with uncommon conditions who have a similar fight. The NHS is great at the standard conditions but throw them a curved ball and they sometimes fail spectacularly.

The best advice I can give you is that you don't give up, you continue to try to get the best treatment for yourself that is available and you will get through this.

My personal belief is that you need your GP on board. They are the conduit to secondary care and if you have the right GP who is on your side then they can make a massive difference to your care. The NHS is so bloody complex (without reason to be but because of tweaking by various different governments) that if you don't understand that system your only recourse is your GP.

Keep on fighting!

Hugs

Jane xx

DavidC
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Re: Total Pancreatectomy

Post by DavidC » Sun Aug 15, 2021 10:58 am

Thanks for your advice Jane.
Sometimes you think you are alone and being unreasonable with your requests for help. It almost falls on deaf ears and like you are talking a different language when you are repeating yourself each time. This forum has provided good advice and an understanding of my condition whereas the consultant I've been in contact with to date seems afraid to make a judgement on what's the best course of action for me.
I will speak to my gp again and get some guidance and speak to this new consultant early in September. Fingers crossed I will have a different perspective on improving my health
Thanks again
David

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Janey Dal
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Re: Total Pancreatectomy

Post by Janey Dal » Mon Aug 16, 2021 1:47 pm

Good for you David!

It isn't easy but please rest assured you are absolutely NOT alone! There are many patients going through similar situations and you also have us! We have all had pancreatitis or care for someone who has.

In my case it is my husband Alan who is the sufferer. His was caused by drinking and he stopped completely after 3 acute attacks. Too late! Because the condition had become chronic in the interim. Sadly I still believe this was partially due to poor advice from his original specialist who was a gastro specialist and gave Alan the advice to 'avoid alcohol'. If he'd have said 'if you continue drinking your condition will become chronic and you will never be pain free' that might have had more impact! We had not found this forum at that point.

And then on another occasion 2 years after he'd stopped drinking he was admitted to hospital with an acute on chronic attack. Whilst in the hospital bed an alcohol specialist nurse turned up, requested by the nurse who had admitted Alan to the hospital, without discussing it with him. He was furious! So you see there are assumptions still being made and medical personnel who don't fully understand pancreatitis not giving the right advice.

His treatment was so much better once he got referred on to a pancreatic specialist who finally agreed with me that Alan had a 'genetic predisposition' to alcohol-induced pancreatitis. He didn't drink that much, he was just very unlucky. It hardly matters I know, but it mattered to ME!

So go get 'em! And keep fighting.

I work in a GP practice as a manager so have a good insight into primary care and their processes and we have ALL been at the mercy of inconsistencies of care in secondary care at times.

Hugs Jane xx

DavidC
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Re: Total Pancreatectomy

Post by DavidC » Mon Aug 16, 2021 2:21 pm

Hi Jane I'm sorry to hear your husband has suffered so much and has had the sort of inconsistent care that I'm also finding.
They of course ask about my alcohol intake every time. Although its non existent as I haven't touched it for many years, I don't know for sure whether it's when aged 20-40 that social drinking has damaged my pancreas, unbeknownst to me.
I was never a heavy drinker and in fact when I part owned a Mallorcan bar in 1989 actually drunk even less than a Saturday night out in the UK. You worked hard and refused drinks.
I can understand why your husband was furious. They should have asked him whether it would be beneficial to see them to try to help understand his condition, but to assume it is and act on it by presenting themselves unannounced is unprofessional and damaging.
It proportions blame and would have made your husband depressed and levels guilt on him. That's not fair!

He, and you, had enough to worry about without hitting him with a "you have yourself to blame" accusation.

I feel they are so focused on finding a cause that they don't investigate and inform on how to get better.
To me it feels irrelevant how I come to have chronic pancreatitis, it's not as if I can rewind the clock to prevent the cause.
I have actually sworn and expressed my displeasure at the "we can't find a cause" response I really don't think it helps.
I watch the effect this illness has on me and my family and sometimes want to scream at the repetition of the consultants questions as they are no different then they were 8 years ago.
I'm more determined than ever that I will get answers that are constructive, rather than the test after test which confirms the diagnosis but falls short of improving my health outcome.

Jane, thank you for listening and providing an insight in pancreatitis from a personal perspective.
David

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Janey Dal
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Re: Total Pancreatectomy

Post by Janey Dal » Sat Aug 21, 2021 12:51 pm

Hi David

Sadly Alan’s story is not unique as you are finding out for yourself. One of the GPs at my practice said that as medical students they are vaguely told about pancreatitis and advised to remember the mnemonic GETSPISSED to remember the causes.

This stands for : G - gallstones, E- ethanol (ie alcohol), T- trauma, S- scorpion bites :shock: . I can’t remember what the other letters stand for (if anything) but it hardly matters does it? The GETSPISSED mnemonic says it all!

I absolutely agree that the reason for your condition is now irrelevant. And indeed we are very much on that page on the forum. There is a no blame culture here which is reassuring and just as it should be. I suspect they are looking for a ‘quick fix’ ie you drink too much so stop. But there are many people who have pancreatitis where the route cause is never identified.

You will find a way through this with sheer determination. I fought for Alan every step of the way because at times he wan’t well enough to do it for himself. Without doubt determination and the support of this forum will inevitably get you to a place that is more comfortable for you and your family.

It is a horrible, horrible illness but there is a way forward to improve your lives and I sincerely believe you have the determination to get there.

Hugs and respect to you

Jane xx

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