Do you think that GP's should give out d... - Early CKD Support
Do you think that GP's should give out details of the NKF to patients newly diagnosed with a Kidney problem ?
When you are told you have a kidney problem it can come as a shock as you don't always have any symptoms so it would be a really good idea for your GP to give you the contact details of the NKF not only for the patient but for the family as well. I know the NKF have a vast amount of information leaflets available.
The trick, now will be to get the GP's to accept thisa service - and the NKF to find ways to pay for it !!!!
I know that in Hull they have funding for a pilot looking at giving information earlier to patients who's eGFR is around 20 and not yet under the care of the Low Clearance Clinic, that will probably be working closely with GP's in the area
Why would they have to pay to give a patient our details, surely they just need to have leaflets available?
Just to be clear, the cost to the NKF would be printing and distributing about 50 leaflets to each of the 35,000 GP practices in England - and then doing it again as they run out. It is actually 1,750,000 leaflets plus postage and stationary each time - not a small sum by any count !!!
The NKF would need a sponsor to cope with such an ambitous project.
Then there's every other patient charity/group/counsellor/company which would give the GPs the problem of deciding which groups to support and keeping all the leaflets so they could find the right one to give to a particular patient.
Probably better to have a central body the GPs respect maintaining a classified list to which they could refer patients rather than expecting each practice to maintain its own system. That central body would still need to be funded, of course.
I thought the original question was should GP's give out details of the NKF surely all they have to do is tell patients the NKF phone number simples!!!
Surely it wouldn't cost anything for GP's to be aware of what help is available and to inform patients of where to get that help ie a website address or advise using a search engine. If patients are directed to a trusted source then it reduces getting onto the wrong websites and being given misleading information.
If anyone would like a NKF Helpline poster for their doctors surgery, or renal unit, then contact the Helpline on 0845 601 02 04 with their details and I will send one out for them to display for the patients. Pauline - NKF Helpline.
My GP gave me no information at all. But my Consultant printed off a couple of leaflets. If you could make the information available on a print on demand basis from the website, they could print it out themselves. I would have welcomed a website like this 5 years ago when I was diagnosed - it's been lonely!!
I had no idea this group existed! I have been doing my own research on the internet and joined a few very good forums. Would have been nice to have been given a few website addresses by the Doctors/Specialists when first diagnosed (although this was 20 years ago) or at some point when in a meeting at the hospital.
I was given no information or advice by my GP - just received an impersonal letter (after a routine blood test) informing me I had Chronic Kidney Disease, which terrified me at the time. I knew nothing about it. Thankfully I found this site by searching the web. There are loads of leaflets in my GP surgery for other things, but nothing for CKD. Appallingly, it seems to be an under-researched, underestimated and largely ignored condition.
Yes I also think they should tell you about the NHS direct website that has details about CKD. That said my GP is very good and has always been very supportive of me.
I think doctors could help a lot to ensure all patients and their families receive more info on where they can gain support and information, but especially newly diagnosed, including children. More support with living with kidney disease is so important.
I found your website because I can use and do use my computer many older persons are unable. .recently diagnosed verbally at new .GP practice .I have had the condition longer but was just given Ramipril to protect my kidneys without explanation at my old .GP practice. The support from your website and from your members has taken me from despair to hope. The Cost of producing literature would be colossal and but in these days of fabulous internet, it might be an idea if when a diagnosis is made,it could be flagged up and the information could then be a printout specifically about your condition. There is so much waste and I have seen in my surgery Paper planes being made to keep kids happy.
A huge thank you to you and your members for all the wonderful advice I have been able to access. THANK YOU.
I'd like to see an NKF poster in EVERY GP's surgery.. But its up to NKF supporters, us patients, at the moment to try for that. The funding needs to come from the NHS/or keen GP's
I see everything from Diabetes, prostate cancer to HIV support in my suregery, but rarely anything kidney related, apart from occasionally the odd organ donation leaflet
Simply Yes definately I have had no help at all from my G.P. in fact I think they try to avoid answering any queries I have, I don't think they really know anything about kidney problems the only info I have has been what I've picked up on here or when I go to see my specialist every 4 months, and occasionally there are some leaflets in the waiting room, but as it is only a small annex of Weston super Mare hospital that is used (thankfully) to save locals having to go all the way to the main hospital in Bristol but they don't have much there.Good news is the specialist is brilliant, and if you can think of things while there he will help all he can, but I always think of things to ask when I'm not there. Woops sorry this turned int a bi longer than simply Yes.
