Search found 440 matches

by eliznew412
Fri Mar 17, 2017 12:45 pm
Forum: The KPG Forum
Topic: ADVICE FOR HOSPITAL DEPARTMENT
Replies: 4
Views: 8678

Re: ADVICE FOR HOSPITAL DEPARTMENT

Hi. Its a long time since Ive posted. I was diagnosed aged 6ys and wad considered too fit to need psychological support. However diagnosis of severe bilateral renal damage, being told id have problems having children and roughly managed by rather emitionally dim consultants left me isolated and repr...
by eliznew412
Thu Mar 16, 2017 6:29 pm
Forum: The KPG Forum
Topic: NKF (UK) Helpline & unsupervised volunteers - caution
Replies: 8
Views: 16028

Re: NKF (UK) Helpline & unsupervised volunteers - caution

Hi. Thanks for the reply. Ok maybe they did send the email but I've never every lost an email completely and they may have sent it to an incorrect email address. Surely then its common sense to nicely offer to resend it? No such luck. What is so worrying about this kind of behaviour and offhanded di...
by eliznew412
Thu Mar 16, 2017 7:53 am
Forum: The KPG Forum
Topic: NKF (UK) Helpline & unsupervised volunteers - caution
Replies: 8
Views: 16028

NKF (UK) Helpline & unsupervised volunteers - caution

I was shocked to find my mobile phone bill had shot up after just 2 phone calls on the NKF helpline. This really spurred me on to write to their CEO. I explained how I had received poor customer service when requesting figures for the amount collected in the raffle ticket sale e mails not arriving. ...
by eliznew412
Wed Oct 14, 2015 5:48 pm
Forum: The KPG Forum
Topic: Hi again Sometime since I logged in
Replies: 3
Views: 7722

Re: Publicity andon emotional effects of renal disease

Thanks Mathew for your response. it does go to show that the emotional response with some practical care really does make a huge difference. I suppose its a 1950s naivety to think of doctors as THE experts. Who would have thought that the NHS and doctors removing a lot of distress from parents could...
by eliznew412
Wed Oct 07, 2015 9:06 pm
Forum: The KPG Forum
Topic: Hi again Sometime since I logged in
Replies: 3
Views: 7722

Hi again Sometime since I logged in

Since I've been posting I've moved to Hampshire. Still struggling with a new sense of "normal". Its been a long road thinking about how my illness made me different from childhood, inspite of the fact that I hadn't reached stage 3 until I was in my 20s. It goes to show how much the emotional and soc...
by eliznew412
Mon Mar 03, 2014 7:38 pm
Forum: The KPG Forum
Topic: Had a rough time? - will your renal unit makes things worse?
Replies: 9
Views: 12582

Had a rough time? - will your renal unit makes things worse?

Since 2006 I have felt very isolated and unsupported as a stage 5 renal patient. I kept recalling how my ex-husband used to yell at me and bang walls till they split, because the stress I felt as a renal patient. However he loved to discuss politics and wonder if I was "through with the Lord". It to...
by eliznew412
Tue Dec 17, 2013 12:46 pm
Forum: The KPG Forum
Topic: suggestion... how about introducing ourselves??
Replies: 933
Views: 1847273

Re: suggestion... how about introducing ourselves??

I am 58 years old and have one son now in his 30s. I live in Bristol and work in a call centre full time. On the renal side I was diagnosed aged 6 years and attended the renal unit for years. The psychological and emotional side was not addressed in my day, and I think still probably wouldn't be bec...
by eliznew412
Sun Dec 08, 2013 9:35 am
Forum: The KPG Forum
Topic: Hitchkicker's Guide to the Weird World of the NHS Complaints
Replies: 4
Views: 5628

Re: Hitchkicker's Guide to the Weird World of the NHS Compla

Yes, I do wonder if us Brits have problems with emotions. The main driving force behind the way I was dealt with was apparently I had upset his consultant emotionally and this was the main guiding light throughout and in his summary/ outcomes. If you talk about money you will be directed to the char...
by eliznew412
Sat Dec 07, 2013 6:14 pm
Forum: The KPG Forum
Topic: Hitchkicker's Guide to the Weird World of the NHS Complaints
Replies: 4
Views: 5628

Re: Hitchkicker's Guide to the Weird World of the NHS Compla

Apparently there are no subsequent meetings, even though at times I have felt extremely down. In fact when I had to bring up a complaint at work there were 2 furthing meetings. Tiring and frightening but eventually some progress was made but at least they won't be directly making me feel like not ha...
by eliznew412
Sat Dec 07, 2013 12:34 pm
Forum: The KPG Forum
Topic: Hitchkicker's Guide to the Weird World of the NHS Complaints
Replies: 4
Views: 5628

Hitchkicker's Guide to the Weird World of the NHS Complaints

I do hope that I don't put patients off making a complaint if they really feel they have to. Personally I would rather avoid making a complaint. However in the current finanancial environment complaints about how doctors made you feel ie non-medical, feelings aren't important and are dangerously reg...
by eliznew412
Tue Jul 16, 2013 12:02 pm
Forum: The KPG Forum
Topic: Post op nausea - meds for renal patients
Replies: 2
Views: 3100

Post op nausea - meds for renal patients

Ive had an op on my thumb, 45min anaesthetic. however 4 days later I am still tired and frequently nauseous. I was told there was reluctance to give meds to counteract this so have been soldiering on depressed and nauseous. Having had a rough time in the workplace, only getting SSP and all care supp...
by eliznew412
Tue Feb 19, 2013 10:49 pm
Forum: The KPG Forum
Topic: He who Dares Make a Complaint!!
Replies: 6
Views: 6515

He who Dares Make a Complaint!!

I am shocked at what I've been put through with making a complaint. I was escorted to a seminar room and was told only literally just less than 5 mins befrore the meeting that it would be recorded. I sat in a very large meeting room with the clinical head of the team opposite me and unit manger next...
by eliznew412
Thu Jan 10, 2013 1:31 am
Forum: The KPG Forum
Topic: Fed up and don't know where to turn, advice needed please
Replies: 44
Views: 49114

Re: Fed up and don't know where to turn, advice needed pleas

I got worried about Felodipine. I started to get stomach pains and acid reflux. The worst of it though that at the height of my fears, it was during the August bank holiday and I got batted between my GP and the renal unit. The GP wouldn't help and told me to go ring the renal unit. I rang the renal...
by eliznew412
Thu Jan 10, 2013 12:39 am
Forum: The KPG Forum
Topic: Local NKF representation
Replies: 1
Views: 2756

Local NKF representation

I have been really shocked that the local NKF seem to behave more like representatives of Clinicians rather than vulnerable patients and seems to be gossip shops about patients. I had some wild accusations that I was going to take a consultant complaint to the GMC, in fact the opposite was true, I w...
by eliznew412
Sat Oct 20, 2012 8:17 pm
Forum: The KPG Forum
Topic: Side effects af Renal Meds and Quality of Life issues
Replies: 11
Views: 25815

Re: Side effects af Renal Meds and Quality of Life issues

I am sure that such strong works getting exchanged is not a good standard way of communicating but when they aren't exchanged what they get up to behind my back is much more scarey! Getting emotional behind my back (that is when I was a kid), confiding in relatives or partners and yet weirdly bracin...