Our questions and the doctor's dilemma: theguardian... - PMRGCAuk

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Our questions and the doctor's dilemma




I wondered if anyone else had read these articles in today's Guardian. We maybe aren't talking about life and death with pred and our other medications - but there are parallels.

If only we had enough time to discuss it all properly with our doctors - and that they would treat us as equals. Because equals we are in terms of what happens to our lives.

14 Replies

"and that they would treat us as equals. Because equals we are in terms of what happens to our lives." You are so right PMRpro! I feel lucky to have found wonderful doctors but it took a lot of searching. These are great articles, thank you for sharing them with us.

DorsetLadyPMRGCAuk volunteer

Hi PMRpro,

Very interesting.

From personal experience (hubby being the patient, not me), I spent six months telling all and sundry, that following a major haemorrhage and a successful angioplasty to insert stent, that the reason he wasn't responding as expected was not due to his heart or coronary system. Eventually, after yet another trip to A&E they did some different tests, and low and behold found Stage 3 Liver Cancer.

I know full well that even if they'd discovered it earlier they wouldn't have been able to operate due to heart problems, but it might have given us chance to do things he wanted to do. As it was only 5 weeks from diagnosis to death it left us very little time. But any suggestion/question by me was batted away with the inevitable -"it's his heart" - having lived with that for 17 years I think I might have had an inkling that it wasn't!

However, once diagnosis was made, he asked those 3 questions, and although offered chemo declined it! His main priority was to go home, live life as long as he could, and die in his own bed, which he did! I have to praise the hospital, they pulled out all the stops that day, organised care from the local hospice, and we went home that evening.

As an aside there were several discussions between the senior hospice nurse and his GP regarding his heart/diabetic tablets. GP insisted he continue to take them all, but as the nurse said what's the point, just give him morphine when required, if he has a heart attacked he's requested DNR.

Different attitudes- hospice staff do what the patient wants!

PMRproAmbassador in reply to DorsetLady

Yes - they have such a different attitude and it is a shame people don't know about it. My BIL refused to allow the H word to be used - until a very very late stage and suffered so very much that wouldn't have been necessary.

DorsetLadyPMRGCAuk volunteer in reply to PMRpro

They do yes, and I think some people just associate hospices with death, which is what they do, but they do it in such a way that makes the patient and family as happy and stress free as possible.

Ron never went into the hospice itself, but the care and attention given by the staff at home was so different from that offered by the NHS (he was treated by them over the first weekend until package completed).

It's not all down to money (the hospice is a charity that gets about 15% of it's funds from the NHS and raises the rest itself) (thanks Doc Martin aka Martin Clunes) but attitude. I was included in the hospice provided care, their philosophy is to include and assist the spouse/family not just the patient in isolation.

If a good death can be achieved, he did that. Helped me so much to comes to terms with it too!

PMRproAmbassador in reply to DorsetLady

Like Macmillan - my BIL wouldn't have them or Marie Curie nurses in either. He wanted his poor wife to do it all. And at the end his relatively young son, mid 20s. But Macmillan is about helping people live with the process of cancer and families lose so much when GPs don't realise that. I was told "It's a bit early for that." Gave me a chance to educate them though.

We had hospice care for my father and they were wonderful not only with him but my mom as well. I also had hospice care for a student. They stepped in early knowing he had a progressive issue. The family is also grateful for their caring. It was a very difficult situation and they handled it with grace and courage.

I do find that a lot of doctors really do not help themselves, because of their arrogance, including my nephew's girlfriend! Nearly ex girlfriend! This is why I find it so much easier talking to a pharmacist about drugs for example as not only are they more knowledgable about the product than your average doctor, they also talk to you on the same level as they are, which is like a breath of fresh air.

“Because someone wanted to reduce stroke risk and someone else watched her heart disease but no one thought of the whole patient.”

This is the crux of so many problems, in my not even remotely humble opinion. I'm currently under gynaecology, rheumatology and GI and when I saw the gynaecologist, before Christmas, she had very little info as to any other investigations I'd been undergoing, since 2013.

Apparently, it's a lot to do with patient confidentiality, but whereas I don't want my medical history uploaded to YouTube, it seems ridiculous that different departments don't know the full history of their patients.

Perhaps I'm maligning the NHS and such a role already exists, but surely there's a need for some sort of coordinator to oversee patients who are under several departments (and let's face it, that's probably most people, by the time there in their sixties). Perhaps I'll write to that nice Mr. Hunt and suggest it ...

PMRproAmbassador in reply to Mrsd12f

"Perhaps I'll write to that nice Mr. Hunt and suggest it ..."


My friends on other forums with complex histories ask to get copied into results and keep their own files. Here where I live we are encouraged to collect our results to do just that, even scans/x-rays and so-on can be burnt on CDs for us for 5 euros. My GP can see everything from this hospital - but they can't see all her notes, just what she tells them. Eventually the entire region will be interlinked but at present it is still patchy. But I totally agree - don't put it as front page news - but let's face it, if someone really wants to see it they will.

Me? My medical history goes back 7 years - anything else I have to remember! My UK history is there and that misses out 10 years when I was in Germany! I did try to tell them - they weren't interested.

Mrsd12f in reply to PMRpro

In fairness to my gynaecologist, once I handed her my essay (old English teachers never retire - they just go on to bore another group of people!) she was absolutely brilliant and has put several strategies in place. However, as several people have mentioned, it's a pity that we do have to keep our own meticulous records and what happens to those poor souls who, for whatever reason, are unable to do so.

Very interested to hear that you can have copies of scans etc. I think I'll ask about that, next time I go. Thanks, PMRpro.


Good article PMRpro only just got around to reading it. When I was diagnosed with Breast Cancer l rang my Rheumatology Team to let them know what was going on & my Rheumatologist rang me back to say how sorry she was, to discuss my Methotrexate & what my Surgeon wanted to do with regard to that, not only was I treated at different hospitals it was cross border, England & Wales, so l wanted both teams to understand l had other issues. Fair play to the Surgical Registrar she rang the Rheumatologist after my surgery to ask what dose of Prednisolone she'd like me on as l'd had Hydrocortisone Cover in Theatre.

And, both Teams always ask what Meds l'm on & cross refer, maybe I've just been lucky or it's because I've been proactive.

Mrs N

DorsetLadyPMRGCAuk volunteer in reply to Hidden


A bit of both probably!

My late hubby was in and out of many hospitals during a 17 year period, and we met a variety of doctors, nurses, protocols and attitudes. Some brilliant, some not so!

I think the most worrying was when he had a triple bypass in Kings College, London and was then transferred back to Dorset with no notes nor arrangement in place for rehab! We spent what seemed hours on the phone trying to get both hospitals to liaise. If we hadn't been fairly young, resilient and used to sorting out problems I dread to think what might have happened.

Hidden in reply to DorsetLady

I do worry for folks who aren't proactive or ask questions. I was talking to my pharmacist yesterday & I said to him, you have to be intelligent to to I'll!

Hope you're doing OK DL? 🌺

DorsetLadyPMRGCAuk volunteer in reply to Hidden

Hi MrsNails,

Yes, good at moment thanks, apart from dreaded arthritis! Which is a bit trying at times, but at least it doesn't stop me talking and laughing!

Am trying Bowen Therapy, had 3 sessions, still not sure about it yet though. It feels good whilst it's being done, but not sure of the long term effect! Bit pricey as well!

You're quite right about people not asking questions, think some older folks still have this theory that doctors should be treated as gods, and not questioned. Although that is disappearing rapidly, some doctors do think they are above explaining things in simple terms to us mere plebs!

If you have a good relationship with your medical people, then you're lucky. I do with my GP, but then we are in a rural environment (busy, but relaxed) and not in a stressful inner city environment.

Take care.

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