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The rights of patients.

(99 Posts)
Falconbird Mon 05-Jan-15 15:20:36

This question has already been discussed in connection with people with dementia but the same thing happened when my DH was given a terminal diagnosis. He was somewhat confused because cancer had spread to his brain but he was quite coherent and with it.

The doctors said that he had to be told that he only had weeks left. I literally begged them not to but they mumbled on about it being the law that people are told the truth. When they told him his poor head was covered with sweat.

We had been married for over 40 years and I knew him better than anyone but my wishes were completely ignored. I remember swearing and making a scene at some point (in a corridor or somewhere) but I felt so helpless that I wasn't allowed to make the decision for him.

I still feel so angry about it more than two years later. Fortunately (in some ways) the cancer took its toll and he couldn't remember that his time was coming to an end and he was relatively calm, thinking he was going to have chemo etc.,

POGS Fri 30-Jan-15 18:53:24

crun

Gruntfuttock was a character in Round The Horn? confused

crun Fri 30-Jan-15 17:55:08

"The only email address on their website is [email protected], but we'll see what they say. "

Surprise surprise, 17 days now, and still no answer. I've also emailed Healthwatch and the Patient's Association for advice about submitting a complaint, but nothing forthcoming there either.

Tegan Sat 10-Jan-15 16:04:39

I used to work at a surgery that was a branch of a larger surgery and in the grounds of a house belonging to one of the doctors. Quite often I would get a pile of mail passed on, some of which included letters about patients from hospitals and they'd been lying in the house for weeks shock.

crun Sat 10-Jan-15 13:24:01

"The problem with letters is they go astray."

Phone calls too. I once had a snipe from a nurse about ignoring my telephone messages, and then found out that PlusNet had put an ansafone on the line without telling me.

FlicketyB Sat 10-Jan-15 08:50:57

The problem with letters is they go astray. DD was seriously injured in a road accident three years ago and is still in need of surgery at regular intervals. During the last three years there have been several occasions when the letters telling her about appointments have gone astray. Fortunately because she has been in contact with the hospital for other reasons, she has always found out about these appointments in time.

Last Autumn she had a date for surgery but it was brought forward a week. We are not sure how they tried to tell her but whatever it was it failed. She found out 2 days before the operation when they rang her about her pre-op check. It also meant problems for her employer and myself because her employer had to rearrange all the cover they had arranged for her sick leave and I had to rearrange a week when I expected to be at home in order to go with her to hospital and look after at home afterwards.

crun Fri 09-Jan-15 23:54:40

jane yes, I know a letter would be better in that respect, but I can't do it anonymously.

POGS Fri 09-Jan-15 23:42:44

Ethelbags.

Glad to hear that , as far as reasonably possible, your appointment went well. flowers

I have noticed your other thread but I can't add anything to it but it has been noted.

flowers

granjura Fri 09-Jan-15 20:46:29

Excellent news Ethelbags- onwards and forwards with the treatment and op- and full recovery flowers

etheltbags1 Fri 09-Jan-15 20:42:15

Ana I have a gorgeous DD, a partner who is lovely too and the worlds most precious DGD aged 2. I have a horrid, grumpy mother, an equally horrid aunt, some distant snobby cousins and in laws that are snobby too. I have a small group of friends, they are mostly older than me, my best friend works 60 hours a week but still has found time to visit me to see of I need anything. My other friend has cancer, another a progressive illness but she rings often, another who lives in the south, a sister I cant stand who lives in London but we communicate. So I do have a smallish network of backup but they just are not available to be there necessarily when I need them as they have their own things to do.
I often choose to be alone, I love my little house, I like to curl up at night on my sofa and read or watch tv, I quite like my own company but if someone was to ring and say they were visiting I would prepare and make them welcome. Everyone gets a cuppa at my house and a share of whatever Im making for the next meal, I was brought up to be like that.

loopylou Fri 09-Jan-15 20:35:35

Mine would too, very difficult call for some I guess.

soontobe Fri 09-Jan-15 20:34:24

Glad it went well today ethel.

Ana Fri 09-Jan-15 20:33:56

Well I'm very glad you have family to worry about you. I had got the impression you were a bit of a loner and didn't have close family but was obviously way off the mark! smile

(Even so, I think everyone's entitled to take charge of their own health issues without necessarily involving others, at least not until it's necessary.)

rosequartz Fri 09-Jan-15 20:30:04

And mine would go mad if I didn't tell them!!

etheltbags1 Fri 09-Jan-15 20:29:22

my family would go mad if they found out I was telling someone else and not them. Big row.!!

Ana Fri 09-Jan-15 20:27:29

Surely you could have asked your friend to respect your wishes regarding telling your family or not, ethel?

etheltbags1 Fri 09-Jan-15 20:21:06

Can I just add that I used to allow my GP surgery to use my mobile number and I was texted 17 times for a reminder to a routine appointment a few months ago.

A couple of years ago I had some blood tests, cant remember what for, and I kept getting a missed call as I never know where my mobile is at home, I rang the number and found it was NHS but I couldn't speak to anyone, I was so scared thinking I had some illness that couldn't wait, I worried all weekend and on the Monday I answered the same call and again it was a reminder to go to the GP appointment next week, a total of 10 calls.
I have now forbidden the GP surgery to use my number. I really need my privacy.
The hospital constantly used withheld calls but never leave a number but why cant they leave a message, it need not be anything confidential simply asking me to ring back, which I would do so.

Anyway is not confidentiality non existant when we are asked to take friends and family with us to tests and appointments. If I had not had to take a friend to my colonoscopy a few weeks ago I would not needed to tell my family about my illness and they could have been spared anxiety over Christmas.

Mishap Fri 09-Jan-15 20:17:15

Good news - I have also posted on your other thread.

loopylou Fri 09-Jan-15 20:11:10

That's good to hear ethelbags, you must be so relieved. And now you know the plan of action hopefully everything will go smoothly for you - fingers crossed!

etheltbags1 Fri 09-Jan-15 20:02:32

thank you for asking mishap
xx

etheltbags1 Fri 09-Jan-15 20:01:56

its not as bad as they thought. I was worried that they would say it had spread but there is nothing just one lymph gland affected and the main tumour so, its a few weeks on chemo then an op. If it all goes to plan I will have been so lucky but Im not counting my chickens yet as this disease is so unpredictable.

Mishap Fri 09-Jan-15 19:56:02

How did your appointment go today ethel?

POGS Fri 09-Jan-15 19:40:58

And what if you don't receive the letter?

I had a letter years ago for an appointment , you guessed it, after the date of the appointment.

Surely a phone call is quicker, proof the message has been received and giving a very personal service to the patient which sounds like good care and service to me.

rosequartz Fri 09-Jan-15 18:54:05

My Health Board has started sending out letters with hospital appointments - even though appointments are made and written on a card at the previous appointment.

A waste of money imo.

I must say it always gives me a monment of unease when I see a letter from the hospital.

janeainsworth Fri 09-Jan-15 18:47:07

crun A letter addressed to the Chief Executive, sent recorded delivery, is less easily ignored than an email, IMHO.

Falconbird Fri 09-Jan-15 18:42:21

Times must be changing. I have had a lot of contact with medical people over the past few years and have found them to be unrelentingly cool, distant and detached. Perhaps they have been told to be friendlier.

I find the ringing you at home quite unnerving. My doctor rang me after an appointment and it freaked me out. It was just to check up on my prescription but I thought she was going to tell me something scary that she had overlooked.

I agree with Ethel - why not a letter to arrange an appointment as it used to be, but I guess that's not cost effective.

The new system can be confusing for us older types. I had to wait for ages for my doc to ring me back to ascertain whether or not my symptoms were urgent. I really just wanted an appointment which I did get about a week later.

I had a scary experience some years ago. I had had an ecg and had an apointment to discuss the results. The receptionist came from behind her desk, smiling in a kindly way and walked straight for me through a crowded waiting room. I thought she was singling me out to prepare me for some bad news, she wanted me to fill out a questionaire regarding the Practice.

shock