All change at papworth

[dianesistern]

Hi everyone i have posted before on the drastic changes taking place at papworth thoracics with amount and frequency changes to dosage among us immunodeficiency patients, when i went on thursday i have been told that two of the patients that i have infused alongside for 9 years have been discharged with no further treatment, so i have immediatly requested to return to my local hospital to have my infusions again as i had them there for about twenty years before and they are happy to treat me again. I have lost all faith in the new consultant at papworth and feel that she is making radical changes to the detriment of the patients, Diane

[bamber]

That doesn't sounds right does it. No wonder you are worried. Usually if you have PID you will need treatment for life. Did they have that? I know of some people with other conditions like ME have had infusions to help and they did get better. But not us. I can't remember your previous posts - were they on this site? I will look.

[mali42]

Hi Diane
Has anyone complained about there treatment to the hospital or to there own gp, You can usually find out how to complain on the hospital website, if lots of people complain they may take notice.

From your last posts about him/her cutting everyone dosage it doesn't sound good but not being doctors or knowing other peoples conditions you can only fight your own corner.

Malcolm

[liz2mac]

Hi Diane,
If you would like me to take this further for you i will, after consultation with our medical advisory panel. However, I will need you to send me an email saying you would like me to do his for you. This is extremly worrying.
Liz

[gilliem]

Hi Diane. All I can say is that I'm horrified. I'm so thankful that you have an alternative lined up for yourself, but those others? I don't know what to think.
Best wishes,
Gillie.

[john]

hi diane,
i too am horrified by what you have told us.
i think you are very wise to have found an alternative route to getting the treatment you need and deserve, but this strange policy by the papworth must be looked into.
good luck and take care - john

[dianesistern]

Hi everyone thanks for your concern i will try to find out if the patients that have been discharged are unhappy about their treatment and then possibly taking it further, i have since spoken to the consultant at my local hospital and they are happy to treat me so some good news on the horizon but he has said that he would like to see me stay undre the umbrella of care at papworth so i will keep you posted on what transpires, i do know that the other two patients did have pids one a young woman of 30 who always came with her mum as she was brain damaged at three from meningitis and the other was a young woman who during our conversations told me she had had meningitis twice, glue ear, labrthnitis among other common ailments of cvid i am in contact with one of them and will endeavour to find out how she feels . Diane

[liz2mac]

Diane,
Can I confirm that the treatment centre we are talking about is actually run by a thoracic specialist and not an Immunologist?
Thanks. Liz

[dianesistern]

Yes that is correct it is a thoracics specialist i used tosee Dr Exley who was excellent but it seems he has been banished to research in the labs but no one knows why but i feel it could be budget issues because that was not his priority he was always very patient care orientated, there are no immunologists in my area the closest is london so i dont get to see an immunologist my local hospital only has heamatology department that i am under they also see me because of the thrombocytopenia they reffered me to papworth initially because of the constant reactions to the immunoglobulins. Diane

[liz2mac]

Hi Diane, thank s for that. I'm on to it.
Liz

[dianesistern]

Hi everyone starting on ivig at my local hospital tomorrow, specialist nurse did ring me from papworth and tried to convince me to stay and have my treatment there she is concerned that my local hospital wont be so on the ball with looking after my chest i have asked if i can stay under thier umbrella of care but be treated locally so tha is the plan . Diane

[sparkle]

Hi
I am a Papworth patient and there seems to be a major problem at the moment. I think the Immunoglobulin prescribing is being reviewed by The Royal College of Pathologists at the moment. Has anyone else heard about this? I had quite a formal letter about it yesterday. My own dose was halved last year, which seems to suggest that for the previous 8 - 10 years I was overdosed??
Sparkle

[s162216]

Its the manufactuers who define what the basic dose should be for an immunoglobulin product should be and then it will usually be worked from from that until good trough levels are maintained. The review into immunoglobulin therapy is to my knowledge about who should be receiving them rather than the doses as supplies are short worldwide so their use has to be limited to those who really need them as there is no other treatment i.e like with XLA, CVID etc rather than those with conditions like Specific Antibody Deficiency or others where immunoglobulins can be used if necessary but there are other treatments that can be used in case of severe shortage etc.

Do you think you would be able to put up a copy of that letter here or type in the main points as I'm interested in what its got to say, to my knowledge nowhere else is halving doses (apart from where the concentration of the product has doubled so its the same dose anyway) or anything like that?

Sam

[sparkle]

The salient points are:-

"As you may know Department of Health guideline about how immunoglobulin is allocated were revised in July 2011. We (Papworth) reviewed the reasons for prescription of immunoglobulin for a number of our patients and we became aware that these were not always in line with these guidelines"

It goes on to say
"As a result the Trust asked that the Royal College of Pathologists undertake an intial review of a number of patient records. We received the results of this review on 25 May 2012 and it recommends that there should now be a formal review of the Immunology Service at Papworth Hospital and that all patients on immunoglobulin therapy should have their diagnosis and treatment reviewed."

So I feel that it is possible that they may decide that my diagnosis for needing immunoglobulin was unsound and for the past 12 - 14 years I have received it unnecessarily.
I will be interested to hear your comments.
Sparkle

[bamber]

That must be such a worry for you. But as this is national wide surely they should be comparing you all to how others in different areas are treated as part of the review?! This would make sense to me. Weird they seem to be going off on there own.

[john]

i hope this isn't just the tip of the iceberg.
cuts are usually made for financial reasons, not for health reasons.
i'm gonna be speaking to my clinic about this
john

[bamber]

Never thought of that John if its happening there could be the start of a National review.

[slf]

Hi
i am not sure if this is helpful,but i have for some time suffered from the after effects of IVIG,over a week later with fatigue and poor concentration,and have often complained. i felt that my body(not a small one) was unused to this mass of antibodies (35g) after surviving so long without.
In december my complaint was finally acknowledged (possibly a reaction to the above doc) and IVIG was stretched from 3 to 4 weekly intervals,after 3 months of this dosage my levels were virtually unchanged,but my body still reacted in the same way(fatigue etc) so now my intervals are 5 weekly.
Well I am on my first fifth week,go back for IVIG on thursday,interesting to see my levels then,but I do not feel worse for it(ok a bit tired this week!).
So to sum up my weekly dose is down from nearly 12g to 7g,I think you can draw your own conclusions,remembering that we all react in adifferent way to our treatment.
Steve
i

[s162216]

Hi,

I had a discussion with one of the nurses at my infusion today, apparently 'ideal body weight dosage' is not supposed to apply to PID, only to other conditions which IgG is used to help treat so there goes my speculation as that being the possible cause.

I mentioned about this review by the Royal College of Pathologists for Papworth and in her opinion it was a waste of time as making people take as minimal immunoglobulin as possible would just lead to more infections and illness in patients.

Sam

[sparkle]

Some interesting responses here. I am on Subcut, I have 35g every week. (But this is my halved dose)
I think there might be something deeper here, perhaps it has been incorrectly prescribed or was costing the Trust too much. I was given a helpline number to call but I did not take advantage of it as I feel my dose has been reduced and this review may not affect me. If it does what has the point of the last 14 years been.
Sparkle