no funding

[dexter2415]

hi,people
had a visit at the hospital toady,and because of an iron deficency, and the that i have anaemia thay said, i probabily need EPOs
between now and starting my dialysis? BUT!! this hospital has no funding for EPOs so i'll have to weight untill the M.R.I pick up/take over my case fully, being told this, relly got to me, of some what, as i'am not feeling very well at the moment, the one good thing i got told, was due to my lagg of iron at the moment, i will start a course of IV IRONs this week, which should help me feel better, hopefully?

take care
DEXTER2415

[debbie]

Hi,
It's important to get your iron stores up before having epo because it won't work. You need a certain level of iron before epo can begin to work. If the hospital doesn't have the money have you asked your GP? I'm in west sussex and down here the renal unit provided the script as PCT wouldn't pay for the epo. I would start writing letters to your consultant, epo nurse, renal unit clinical director etc and more or less demanding epo. Other people are probably on it, so why should you be denied. IV iron is best when epo is added into equation. Let us know how you get on and take care......

[Hal]

Hi Dexter,

I presume M.R.I stands for Manchester Royal Infirmary ? I would push for a transfer as soon as possible if this will help you get proper treatment. As Debbie advised write lots of letters.

Also give the North West Regional Kidney Patients Association a call, they should be able to give you some advise what to do. They can be contacted via email on:

[email protected]

I will see if I can get a telephone number for you as well.

Regards,

Hal.

[Kelly]

Hi dexter

I dont post on here often, only to give words of encouragement, moan or when someone posts something like this that really gets my back up.

When i read your post, i was completely gobsmacked, that in this day and age, a hospital does not have sufficient funding for some injections, that can make the differnce between feeling completely crap and feeling better.

I think that you should name and shame the hospital in question!!

Antway rant over - i hope you feel better after your IV iron.


Take care

Kelly

[JMan]

Hi Dexter,

I PM'd you but thought I'd post this for the benefit of the board. there are now European Anemia guidlines that units need to meet. These state that patients should receive EPO if their HB is below a certain level (I think 10 but I am trying to find the reference).
I'll get back to you when I find the actual information.

[MANCHESTER STEVE]

Hi Dexter
Your local KPA has asked, and has beed reasured by the 'system' about access to epo and no one should be waiting an excesively long time to recieve this drug.
If you could contact me i shall try to help and resolve your situation
Manchester Steve

[Mike]

Hi,

I understand completely what you are saying, I've been due to start epo for months now and after constant moaning at them about how crappy and tired I feel I am actually going to have my first shot on wednesday!

I had my iron iv months ago and at that point I think I had a ferritin of about 30 and really did feel awful but it seemed to help quite a bit but I'm pretty much back feeling how I did back then now. Anyway I start my PD training on wednesday as long as I can get the supplies sorted out I should be back on my way to feeling better I hope?

good luck with everything

Mike

[JMan]

Found what I was looking for, eventually......

Take a look at the European Anaemia Management Guidelines:

http://www.ndt-educational.org/guidelines.asp


as this is fairly up to date.

Also see the older quoted standards below.
from:

http://www.renal.org/Standards/RenalStandSumm02.pdf
The Renal Association is the professional body for United Kingdom nephrologists (renal physicians, or kidney doctors) and renal scientists in the UK.

7 Anaemia in patients with chronic renal
failure
Standards
Y Target haemoglobin. Patients with chronic renal failure (CRF) should achieve a
haemoglobin of 10 g/dl (A)* within six months of being seen by a nephrologist, unless there
is a specific reason such as those outlined below. It is unclear as yet how epoetin should be
used optimally in patients before dialysis becomes necessary and whether normalisation of
haemoglobin gives further benefit.
Y Adequate iron status. Patients must be iron replete to achieve and maintain target
haemoglobin whether receiving epoetin or not. (B) A definition of adequate iron status is a
serum ferritin >100 µg/l and <10% hypochromic red cells (transferrin saturation >20%)**.
Recommendations
Y Evaluate anaemia in CRF when Hb<12 g/dl (adult males and post- menopausal females),
<11 g/dl (pre-menopausal females) (B); anaemia may be considered the result of uraemia if
the GFR is <30 ml/min (<45/ml/min in diabetics) and no other cause, eg blood loss, folate or
B12 deficiency, is identified. (B)
Y Iron administration: oral iron will in general be sufficient to attain and maintain the above
targets in those not yet requiring dialysis and those on peritoneal dialysis (PD); in contrast,
many haemodialysis (HD) patients will require intravenous iron. (B)
Y Regular monitoring of iron status (at least every six months) is essential during treatment
to avoid toxicity: a serum ferritin consistently greater than 800 µg/l is suggestive of iron
overload. (B)
Y Route of epoetin administration: it is preferable to give epoetin subcutaneously even in HD
patients. (A) Some patients (such as obese subjects) may require intravenous injection to
obtain good absorption.
Y Haemoglobin concentration should be monitored monthly for stable hospital
haemodialysis patients and 3 to 4 monthly for stable home HD and PD patients and epoetin
dosage adjusted accordingly. (C) Haemoglobin will require to be monitored more frequently
to begin with.
Y ‘Resistance’ to epoetin: failure to reach the target, or need for doses of epoetin above 300
IU/kg/week, defines inadequate response (‘resistance’). Iron deficiency (absolute or
functional) remains the commonest cause. Hyporesponsive patients who are iron replete
should be screened clinically and by laboratory testing for other common causes, such as
raised iPTH, malignancy, infection/inflammation, aluminium toxicity, effect of ACE inhibitors
and possibly epoetin antibodies. (B)
Y Blood pressure: must be monitored in all patients receiving epoetin and hypertension if
present (for definition see Chapter 6) should be treated by volume removal and/or hypotensive
drugs. (B)

quoted from Renal Association. Treatment of adults and children with renal failure: standards and audit measures. 3rd Edition. London: Royal College of Physicians of London and the Renal Association, 2002