Trying to help my Mum who has had bad care, I don't know what to do?

[FrameyMcFrame]

Hi, my Mum has had a cascade of drugs causing side effects and bad care. She has had Breast Cancer treatment then prolonged coughs and breathlsessnes which we attribute to the Aramotaise Inhibitors, then prescribed steroids then followed by developing Atrial Fibrillation then given Warfrin then she nearly bled to death with a nose bleed yesterday morning in A&E while we waited to be seen by a doctor in a cubicle.

I feel so confused and let down by the docs, she has been passed from pillar to post seeing oncologists, cardiologists, ENT doctors, Stroke consultant and they all seem to be working against each other and she is stuck in the middle getting a shit deal.

for instance, ENT consultant said no more Warfrin last night and that she should stay in hospital until Friday. Then this morning we are told she should start taking 3 Warfrin a day again and that she was being discharged. By the time I got over to hospital she was sitting in the day room with all her bags packed and no doctors around to ask WTF is going on. Loads of other things have happened like that, too long to go into.

Sorry, so long post, if anyone has any idea what I can do. She is not well and we can't get to the bottom of it.

She has an appointment with the GP tomorrow and I'm going with her. They have also been really useless and did not monitor her blood levels of warfrin like they were supposed to. Then they blamed my Mum for not making an appointment herself when no one told us she had to go in...

Framey first up, you need to adjust the outward appearance of your attitude- sorry, but if you want to see instant stone-walling, going in, guns blazing would do it! You could contact PALS at the hospital to get some clarification which might help, but you also need to be aware that it's possible everything was explained in depth to your mum, on her own, and she politely nodded along but didn't grasp much of it. It's part of the new anti-ageism (legally binding) drive where they have to treat every adult as fully cognisant unless a barrage of tests have 'proved' otherwise. There are also confidentiality issues: they may not tell you 'what's going on' for fear of breaching your mum's privacy.

There's no doubt about it, in hospital, 'things' move on rapidly without the patient being present, such as MDTs that alter the course of a patient's treatment. IMHO it's right and proper that the patient isn't present at these meetings- they wouldn't have time to explain every nuance of every medical term bandied around! And it would only serve to scare people without the necessary knowledge.

I recall going to a specialist in a remote country town in Oz with both my IL's (and BIL) to act as 'interpreter' (I am a HCP) for them. The doc actually explained everything well (both were diagnosed with different cancers in the same week!) but I was interested to note MIL in particular's understanding of what she had been told as she recounted it to others. She was of 'normal intelligence', I'd say but she appeared to have heard every other word! In other words, her 'shock' at suddenly being at the pointy end of medicine and her lack of familiarity with anything medical rendered her completely out of her depth when it came to understanding what the specialist had told her.

It can be very frustrating but these are aspects of what the NHS legally have to do. So maybe I'd go along to the GP, though bearing in mind your mum's care has actually passed 'beyond' them, and maybe ask PALS if the can arrange for someone to talk to you about the changes of direction, and why.

Hope you can get it sorted to your satisfaction.

Sounds very hard ,you have all my sympathy OP .

Why not come over here www.mumsnet.com/Talk/elderly_parents
perhaps there could be more advice to offer ?