After 13 yrs i have a pancreas specialist appt

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heleng
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After 13 yrs i have a pancreas specialist appt

Post by heleng » Sun Jan 12, 2020 6:01 pm

Hi there, a few months ago , I joined this forum and read many links etc. 13 years ago I nearly died with acute pancreatitis, gallstones, and have never been well since, I now take insulin and creon and have all the complications of diabetes, even my first foot infection this year. The onset of cardio problems has made my life more miserable. However, after your comments I found a panky specialist and asked if they would see me, they agreed and after 2 hours of crying I asked the dr to refer me. On Friday 17th I have an appointment, I suspect it will be either the best or worst thing I have done, as in a way I see it as my last chance. Do you have any suggestions of encouragement or questions I should ask. Thanks for your encouragement to push for this appt. Helen

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maz
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Re: After 13 yrs i have a pancreas specialist appt

Post by maz » Mon Jan 13, 2020 8:51 am

I'm so glad you have managed to find a specialist and be referred. I hope now you get some answers. If you can take someone with you to your appointment that would be good. 4 ears are much better than 2 as we can tend to remember different things. Write questions down as you no doubt will forget what you want to ask. It might be difficult to ask them at your first appointment as much will be them getting information from you etc., but a good idea to be ready.
Marilyn

heleng
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Re: After 13 yrs i have a pancreas specialist appt

Post by heleng » Mon Jan 13, 2020 1:44 pm

Thank you for your reply, to be honest I am going to Jimmys in Leeds so not to far from you. I feel I have 13 years of questions and then I feel I don't have any questions. My husband will go with me but he doesn't go in with me, he finds it very difficult to be honest. I think the major thing for me is not to feel judged and understood. I feel like I don't fit anywhere else. My GP said I wont get to go again and wont get treatment so just ask stuff but I am hoping he is wrong and I get some support.

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maz
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Re: After 13 yrs i have a pancreas specialist appt

Post by maz » Tue Jan 14, 2020 9:22 am

I think the fact that the specialist agreed to see you is in your favour. They could just have said no. I imagine you will be asked a load of questions, so begin jotting down anything you might think of or remember. Think of areas of pain, if foods bring the pain on etc. I can come away from doctors' appointments and realise I had forgotten important things I could have mentioned. We are nervous, scared sometimes, and often not put at ease. I go right back to being a junior nurse in front of scary old fashioned consultants when I see a doctor! Back in my early nursing days(in the 60's) we couldn't even overtake a consultant if walking down a corridor. They were gods and many were very scary. I am so glad things have mainly changed, but my memories remain.

Not long for you to wait now.
Marilyn

heleng
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Re: After 13 yrs i have a pancreas specialist appt

Post by heleng » Tue Jan 14, 2020 12:34 pm

That made me laugh about old style consultants, I think there is still a few about and the politics between them are hysterical. I have a diabetic consultant that has been amazing and he looks like he has just got out of bed. I am afraid I treat consultants and gps respectfully but do challenge them. I feel so sorry for them as they don't have time for anything complicated. I walked in to a new diabetic consultant who said you look very well with no pancreas, mmm read my notes I think I have still got it. I paid £400 to see a private rheumatologist and after a few questions he turned his computer screen around and said read this leaflet on fibro. I promptly turned the screen back around and said at £10 a minute I want an educated conversation. The shock on his face was a picture but he apologised and we had a good chat 39 minutes long exactly, presumed I had a minute to open the door.

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maz
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Re: After 13 yrs i have a pancreas specialist appt

Post by maz » Wed Jan 15, 2020 9:07 am

Oh my goodness Helen, that rheumatologist :lol: Shocking really, but yes, I did laugh. Well done on being pro-active there, and give him his due, he did apologise and change the way he did things, for you at least, but let's hope it made a difference overall too.

My husband saw a cardiologist last week. He had an ECG first and the lady who did that warned him that the consultant didn't talk much so ask questions! Well she was so right about that :shock: We hardly got told anything, and what we did was by his nurse anyway, who I presume takes up the slack whilst he gets on with not talking to his next patient. He wasn't an old guy either so I was a bit stunned. I guess you can't change your personality :roll: and I suppose as long as they are good at their job it doesn't matter over much. But a more people person type of doctor would certainly put patients more at ease. After all most patients are just scared when they are at that point. Fortunately we can laugh a bit and John said he was glad he had been warned, but...
Marilyn

heleng
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Re: After 13 yrs i have a pancreas specialist appt

Post by heleng » Fri Jan 17, 2020 9:57 pm

Well my panky apt went very well and will now be tested and always monitored, hey where have you been all my life! Why did I have to battle for 14 years and beg for this appointment, I was so forthright with him, I said I am Helen and I have been in a medical wilderness for 14 years , I have had a hell of a day with other issues and I will look back at this day and think how do e do this .

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maz
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Re: After 13 yrs i have a pancreas specialist appt

Post by maz » Sat Jan 18, 2020 8:49 am

What good news for you Helen. I was thinking about you last night and wondering how it went for you. I hope you now get some answers and help for what you have been going through. x
Marilyn

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Janey Dal
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Re: After 13 yrs i have a pancreas specialist appt

Post by Janey Dal » Sat Jan 18, 2020 11:36 am

Brilliant news Helen!

I know many years ago my husband Alan who is the CP sufferer ended up seeing a panc specialist as a result of my joining this forum. He had been under a gastro consultant up until then. The difference was amazing and at last we felt like we were talking to somebody who understood.

The main thing is the monitoring and it makes a massive difference.

Onwards and upwards for you hopefully.

Hugs

Jane xx

heleng
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Re: After 13 yrs i have a pancreas specialist appt

Post by heleng » Sat Jan 18, 2020 9:26 pm

Thanks guys, I found this forum by reading a book and both the book and forum made me push for one last time. My GP was so reluctant and I had to chase the referral 3 times. The strange thing was after 13 years of these are symptoms and many tests inconclusive, you doubt yourself, only 6 months ago I was told I was fat, lazy and had IBS by my GP.

The person I saw is a specialist pancreatic surgeon, he doesn't need to ask me about symptoms he knew, I never mentioned pain but he instantly said pain management clinic. It was so strange not to give details of symptoms as he knew where I was. It is strange how 20 minutes with the right person validates my 13 years of fight and insults.

For someone to know that I chose a lifestyle to help my pancreas was so powerful and he respected that an gave me the nicest smile.

I did mention the ignorance about this disease but I think they owe me that, I also mentioned only 4 days before my GP had said I will never be able to go back and wont have any follow up, I nearly cancelled the apt, why do we all face this prejudice for having a nasty disease,

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Janey Dal
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Re: After 13 yrs i have a pancreas specialist appt

Post by Janey Dal » Sun Jan 19, 2020 11:23 am

Hi Helen

Your GP does not sound great to be honest. Pancreatic problems are notoriously difficult to diagnose which is why your GP should have at least sent you to a specialist sooner in order to rule it out if nothing else. The whole point of the system is that if a GP feels that they are not getting to the bottom of problem because it is outside of their area of expertise then they refer the patient for a second opinion.

I would either find a different GP or let your current one know of your dissatisfaction.

Hugs

Jane xx

heleng
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Re: After 13 yrs i have a pancreas specialist appt

Post by heleng » Tue Jan 21, 2020 9:07 pm

I think the reality is GPs don't have enough time for complicated people and especially a disease they don't understand, I had this discussion with a foot specialist today and the Consultant said the same thing, they have to fight to get GPS to do prescriptions and referrals. I have moved quite a lot and never really found a GP that has been onboard. The majority just lets me self med and keeps out of it.

I have just got an apt for a scan at wharfedale within a week of seeing consultant, when the NHS works its amazing,

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Janey Dal
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Re: After 13 yrs i have a pancreas specialist appt

Post by Janey Dal » Sat Jan 25, 2020 11:32 am

Hi Helen

Your post saddens me. I work in a GP practice and I can honestly say that our GPs would deal with you appropriately. When Alan, my husband,was first diagnosed with CP his GP was obviously not sure of how to treat him. When we went back two weeks later he did. He had investigated it and became extremely good at managing it. THAT'S a good GP.

GPs should have the time to deal with complex patients. I am not sure if you live in a rural area or not? It can make a difference sometimes.

Hope things improve for you GP-wise.

Hugs

Jane xx

heleng
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Joined: Wed Oct 23, 2019 10:13 pm

Re: After 13 yrs i have a pancreas specialist appt

Post by heleng » Sun Jan 26, 2020 7:49 pm

Hi, I do live on a rural area and have moved several times which doesn't help, I think the trouble is that when I had my original acute panky , I didn't drink , they took the gallbladder out and acute doesn't turn in to chronic, modern leaflets still say the same thing. So I think I slipped through the gaps for many years. I once waited 6 months to see gastro after extreme sterrhea and I got told the reason why I was tired is I had sleep apnea and was wasting time. That sort of thing has continued until 4 days before I saw the specialist, my gp looked me in the eye and said you get one chance to go, no follow up, no tests etc. The trouble is it is so hard not to have an attitude with consultants, I am well educated, always attend and always polite etc, but after years of rejection etc its hard to believe in the system. Time will tell how this goes but I am glad I went, bit of a wake up call to be under a surgeons care .

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Janey Dal
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Re: After 13 yrs i have a pancreas specialist appt

Post by Janey Dal » Sat Feb 01, 2020 1:54 pm

Hi Helen

Sadly the 'national' part of the NHS is a misnomer. It is as far from being national in terms of care as it is possible to get. There is, without doubt, a postcode lottery.

There is little doubt that GPs in rural areas will see fewer cases of (sometimes) lifestyle conditions like pancreatitis because a) they generally see fewer patients and b) the demographic of their patients will be very different from a GP working in a town or city location.

My practice is in the middle of a town which is in an area of high deprivation. 5 miles down the road is a practice which is in a very affluent area. The difference in the patients' conditions is astonishing!

I would put my next wage on the likelihood of the other practice's GPs knowing anything much about pancreatitis. My GPs are very au fait with it.

There is also the point that as a patient, you need to take responsibility for your own health. This is not a dig at you, it is simply pointing out that if the care you are receiving is not satisfactory for you, then you need to be assertive.

I feel for you because the situation you have been in for so many years has been dire. Now though, you need to take control. You have a doorway into better care. Don't let the specialists fob you off!

Remember this: specialist appointments are your personal opportunity to get the care you are entitled to. I know very well that some specialists can be patrician and condescending at times. Do not let that put you off. Who loses if you don't challenge them?

YOU!

Take somebody in with you if you can. Take a list of pre-prepared questions and don't leave until you have all the answers you want.

And an invaluable tip: doctors will stand up when THEY feel the consultation has come to an end (for them). This then forces the patient to stand up and leave - it's a body language thing. If you don't feel that you have all the answers to your questions or are not satisfied, then (as uncomfortable as it will feel) don't stand up! Remain sitting. Body language works both ways.

You can challenge without being aggressive. By not standing up when they do, you are being totally non-aggressive but also indicating that you are not finished even if they think you are.

Hugs

Jane xx

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