Patient Lead Support Group

[shorty]

Hi Ladies & Gents,
Just a wee posting to let you know about the new Patient Lead Support Group thats starting in the near future. Its going to be held on the 3rd Tue of every month @ Clan House Westburn Road Aberdeen. The first meeting will be taking place on Tue 19th June @ 6.30pm and we would love to see as many people as possible attending it. So why not pop along folks and have a cuppa and a blether and see whats on offer and let us know what you think.

Hope to see you all there.

Shorty

[pmannion]

Alan has sent me some pictures and a description of the Patient Led Support Group which I've put on the main UCAN website here:

http://www.ucanhelp.org.uk/get-support/patient-led-support-group

and a press release on the Fundraising site here:

http://www.ucanfundraise.org.uk/about/news/78-ucan-sets-up-new-patient-led-support-group

On those pages you can see some pictures taken at the recent meeting and see how well attended it was.

Paul.

[Jim]

Hi Guys,

I hope to group is beginning to function well and you are getting a reasonable attendance.

Jim

[trevor]

I just wanted to say thank you to everyone for last nights meeting we were made so welcome it was our first visit james was only diagnosed about 6 weeks ago and has his op 2 weeks today and for me this was the very first time I had spoken to anyone else going through this journey ,one point brought up was how nurses etc tell patients this was hard for me as I had no idea james was going to be told he had cancer I was waiting in the car while he went in for his appointment and to hear him tell me on his return "I have cancer " was so scary I dont know how things can be changed but families need to be put more in the picture even if he had been asked to bring someone along just wondered how others were told and dealt with it ?even if a nurse had called me next day just to see if I had been told I dont know but I do feel its something that needs addressed

[richard]

Hi There. Great that you enjoyed last nights Patient lead support group meeting.
And sorry to hear how you found out about your Hubbys cancer.
In these situations i dont think there is one easy solution. When i was diagnosed my
wife was wanting to come with me but some folks prefer to go in on there own and
some people have no option but be alone as they have no one else .
No matter how we are told it is a Big shock as we all assume that The C word means
we aint got long to go, but in a lot of cases with Prostate Cancer it is not the case .

As the patient lead support group is quite new it is great that you got some answers to
what can be a worrying time for the Patient and relatives.

It seems to be good that patients and relatives can speak face to face with people in similar situations to themselves.
Take care Richard

[trevor]

thanks for your reply richard as you say your wife went with you I had no inclination at all that james was going to be told the news or believe me I would have been there I just think that perhaps nurses need to get in touch with family to see how they are if that makes sense

[richard]

Yes i know what you mean . I remember them at the time saying to me about the forum and buddies etc but not a lot went in and stayed was still in shock.Because wife was with me she was asking questions that i never even thought of . Maybe it would be good for a follow up call maybe couple of days later as you may have some more questions by then . Sure i was given cantact names and numbers to contact if i had any queries .

thanks for your reply richard as you say your wife went with you I had no inclination at all that james was going to be told the news or believe me I would have been there I just think that perhaps nurses need to get in touch with family to see how they are if that makes sense

[Christine]

Hi I'm Richard's wife and if there's anything you need answers on or just someone to talk to just let us know and hopefully someone can provide you with answers.

Remember your not alone

[trevor]

Thank you christine really appreciate that ,there is just james and I no family so good to know

[the rudge]

Hi Trevor

Please get in touch if I can be of any help. I live in Stuartfield and am six years done the road from my op.

Tony

[pmannion]

Just to answer some of the comments around patients getting their diagnosis on their own and regarding nurses giving follow up phone calls.

The nursing staff are unable to give follow up phone calls. Contacting family members in this manner would be a breach of their nursing code of conduct. The nurses have to respect patient confidentiality and some patients do not want their families to know of their diagnosis.

Apologies if this was explained at the support group but the nursing staff wanted me to highlight the reasons for anyone else reading this thread.

Great to see the forum being used like this for following up issues raised at the Patient Lead Support Group

Paul
(Moderator)