The rights of patients.

I shall be thinking of you when you go for your appointment, ethelt. Perhaps you should make a list of the questions you want to ask, as from experience I know your mind will go blank if you rely on memory! Don't forget that the majority of the comments on here on your condition have been encouraging as to the outcome. Let us know how it goes.

I think we could all of us change our name to scardycat if faced with the same situation Ethel, and I will be thinking of you all week.

As Ana says, if you want more precise answers, you'd have to ask for this very directly and specifically. Doctors don't volunteer information, generally, unless asked directly. But it is a big decision to ask yourself whether you want to know, or not. If your mind is now (quite naturally) imagining the worst... maybe it is best to ask ((((hugs))))

My appt is Friday. (chewed nails).

Good morning ethel hope you are feeling ok today. The suggestions about making a small list of questions is a good one, inevitably after discussions/diagnosis about treatment options the doctor will ask if you have any questions, equally inevitably you will, like the majority of us, say no!. There will likely be a nurse there to explain to you about the treatment, they understand your fears and will help. Ask for help, don't bottle it up, and offload on here anytime you like, there are lots of people who can empathise and help and advise from experience.

And don't forget you to ask for a phone number so if you think of something later you can call someone!
(((HUGS))) to you ethel x

I imagine MacMillan nurses are also available for people who are worried and have questions, for medical and emotional support.

Rooting for you ethel.

Yes thinking of you Ethel its ok to be scared. We'd all be scared in your situation. Keep posting

the thing that bothers me the most is the touchy feely way the nurses behave, Im not often at hospitals but Ive never been patted on the back or had my hand patted before. Is it a new way of dealing with patients.

Is it maybe to get patients so friendly they will not want to sue if something goes wrong. Is it just cancer patients that have to be petted this way.
anyone got any ideas about this.

I expect them to keep a professional distance and just to be friendly, smiling but not touching me apart from treatment. After all if I was to touch a nurse they would be horrified. It is patronising to say the least and goes with the way they say 'we will just pop you onto the bed'.
I have mentioned the word 'pop' before.
My elderly mother finds they treat her the same and she keeps saying Im 80 not 90. She does not have cancer so it may be the age thing. Is it because Im over 60 that they start to be patronising.

Couldn't agree more ethelbags1 since turning 60 I have been patted, half cuddled and had my hand held etc by all sorts of health professionals. On leaving my GPs surgery last week where I attended for a routine appointment. She patted my shoulders and said " nice to see you" I felt like a little old lady who needed some sort of physical contact to connect with the world. I am not a very tactile sort of person so perhaps as ever I am overreacting?

chloe No you are not overreacting, I hate to be cuddled etc, by anyone other than someone I love. This attitude is making me really angry and I hope any health professionals reading this will take note.

I did not change when I became 60 or when I was diagnosed with cancer. Im still ME, the same person and I really don't need mollycoddling.

I imagine if someone is older and has no family and maybe doesn't see anyone from one appointment to another, they may be glad of a bit of a fuss. When I say older, I mean maybe aged 80 or 90s.

the annoying thing is that many of these health professionals are my age or maybe older and surely when they trained they would not be allowed to be 'touchy feely'

I think doctors do tell you what you need to know, partly I think to protect themselves.

DF died in hospital after a roller coaster of a last illness that only became terminal in the last two weeks. After DS and I reported his death, which we could do on-site, we were shown into a councillors office. She immediately went into councillor mode, but we explained that DF was 92, we both understood his medical condition and had realised why it had become terminal and accepted his death as inevitable.

She seemed almost shocked that we could be so objective about DF's medical condition and death. She said that many people could not accept the death of someone dear to them, even after a long terminal illness or long slow decline and seem to feel that the doctors had let them down by not curing them and that they didn't need to die. Her (unenviable) task was to help to 'talk them down' so that they can come to terms with the death of someone who may have been very dear to them but was, often, very old and unable to fight infectiom or been ill with a known terminal illness for a long time.

The doctor's best proection was having let those involved know the potential outcome.

An interesting thought ethel. Personally I do not mind - indeed find it quite reassuring to be dealt with by someone who has a human side. My GP sometimes does this as I leave the room and I always take it as a gesture of sympathy for the situation that I am currently in. But you are of course quite right and it is a new thing. When I was a social worker in hospitals this would have been frowned on; although there have been situations where I have held the hand of someone sobbing, or put an arm round them - I would have found it very hard not to.

I think it goes along with calling people by their first names. You must not read anything sinister into and think it is because you are iller than you are - it is just the way things are now. It must be difficult for those who feel uncomfortable with that sort of approach.

Sometimes professionals just can't win can they? I agree with Mishap- doctors used to stand on pedestals and be aloof and so matter of fact- I think it is good they are more prone to show empathy- and the power of touch is huge emotionally. But of course, it won't suit everybody.

Perhaps the 'British stiif upper lip' is coming through here. I was brought up in a very 'touchy feely' kind of family, and I have to say, as a furiner, found it very strange and cold how so many English people would find it abhorrent to kiss or hug or touch in any kind of way, when I first lived there (1970).

ethelbags when I went to see the consultant and got a diagnosis of CLL (the 'safest' form of leukemia!) the MacMillan nurse who met with me afterwards was kindness personified. She gave me facts, reassured where she could but was also honest. I have a contact number if I feel the need to call. I do not think it benefits health professionals to do other than be honest with patients.

"I imagine MacMillan nurses are also available for people who are worried and have questions, for medical and emotional support."

Beating Bowel Cancer are good too. They have nurses on a helpline you can ring to ask questions or just chat. There's a forum too.

When I had a cataract from my right eye removed under local anaesthetic, the nurse asked if I would like someone to hold my hand during the procedure.
I politely declined and no offence was taken.
I'm sure ethel that if you indicate with your body language that you don't want to be touched, or just say so, the staff won't touch you other than doing whatever is necessary to carry out an examination.

I feel I have no rights as a patient. Everything has to be to fit in with the doctors and hospitals convenience.
I rang to make an apt with GP to renew my sick note, I was told I could not have an apt unless I was acutely clinically ill so said I had to have a phone call from the doc if he needed any information on my condition. I was out all day and called at surgery to find he had renewed my sick note and went home.
I found a message on my answer machine from the doc asking me to make an apt as he said he needed to see me as this is the system by which he is paid.

I rang back the next day and asked if I could have an appt and was again told I must be acutely clinically ill, and said the doc would ring me next Tuesday. Am I being awkward or reasonable to be angry at having to stay in all day waiting for a routine call from a doctor. They expect you to make appointments to suit them so why should I have to wait all day.

The hospital asks repeatedly for my mobile number which I wont give them, they make withheld number calls and I don't answer if they don't leave a message. I find it intrusive to have phone calls. Whats wrong with the old system of a letter to make an appointment.

Do you have 'awkward patient' tattooed on your forehead ethel?
The relationship with doctors and nurses is a two-way thing, you know.

Oh dear ethelbags, it does nowadays sometimes seem as if things are intrusive.
Patients are asked for mobile phone number, so that surgeries, dentists, hospitals can send appointments and reminders by text. I find this really useful as if I don't write it down there's every likelihood I'll forget!
Hospitals won't leave messages on your home phone because of confidentiality and the possibility of wrong number or wrong person hearing the message- just the same when I was district nursing.
I'm surprised your surgery doesn't understand your situation and be more helpful! Even if the GP phones you, you should be able to ask the call is in the morning or afternoon to save hanging around.
If he's left a message saying he needs to see you then the surgery receptionist should give you an appointment regardless of urgency?

I know from experience that when one is ill /worried it is hard to get ones thought clear and organised and it is easy to mishear or misunderstand what is said.
A doctors' surgery is dealing with 1000s of individual patients. Of course they have to organise their work /times/etc to cope with the huge demand and not round individuals. It is hoped that they are able to retain a human/humane approach in their day to day dealings with patients but it unrealistic to expect to book a specific time for a doctor to call you. Hence the need for mobile numbers so they can speak to you even if you are not at home. Dr Finlay is a doctor in the past!

Giving them your mobile number might make your life easier ethel - you do need to do everything you can to ease your way at present. I know intrusive calls are a pain, but the calls that you are likely to get from the GP and hospital are those that will help you get your medical problems sorted as smoothly as possible.

Ethelbags1 re. letters, it is far more efficient to be able to speak to a patient. Letters can be lost or delayed and at best take two or three days to get thorough the system. I'm not happy about withheld numbers but it is for confidentiality. Normally I do not answer them but I think is it reasonable to do so if you are aware that they may call you. A mobile number is very helpful to both you and the doctors and it is not as if they will be givin g it out to all and sundry.

You are one person and of course, very important but surgeries have hundreds of people to deal with.

Intrusive phone calls are a two-way thing too. The GP is probably phoning you from his personal phone at home, or from his mobile - the surgery number is being kept for people making appointments (or trying to!) and emergency calls from people who are really ill and need immediate attention.

If he/she gave out a personal phone number to all the patients on his/her list to ring back to, imagine how their day would go! Calls every five minutes, perhaps in the middle of a serious talk with a patient, from patients who want to bypass the receptionist and get an instant chat and diagnosis.

Elegran that last paragraph reminds me of an elderly relative of DH who treated kindly ex-GP neighbour as her private consultant 24/7. His daughter was a friend and she said X phoned day or night expecting a visit and advice.
The poor chap eventually told her he was going ex-directory if she persisted so she said that was ok, she'd bang on the wall!!