ESA Appeal for 0 points for a disease called fabry

I attended a ESA medical at Arden House, Gosforth for a progressive , life threatening disease called Fabry's. I have 2 weekly intravenous infusions and will have for the rest of my life. I scored 0 points. I sent the forms off back in november to appeal and had heard nothing till today. I recieved a phone call asking 'if I was still wanting to appeal' and was there any change i would like to put forward. Just wondered if this is normal procedure?
If anyone can advise me I would be very grateful
susan

Mode edit: Moved to Questions forum. Gordon

oh, how i know arden house well

have you asked for a copy of the report? see if i's in it and it says about your treatment. if not, thats where you start.

get onto welfare rights in newcastle. they will help you out

susan wrote:

I attended a ESA medical at Arden House, Gosforth for a progressive , life threatening disease called Fabry's. I have 2 weekly intravenous infusions and will have for the rest of my life. I scored 0 points. I sent the forms off back in november to appeal and had heard nothing till today. I recieved a phone call asking 'if I was still wanting to appeal' and was there any change i would like to put forward. Just wondered if this is normal procedure?
If anyone can advise me I would be very grateful
susan

Mode edit: Moved to Questions forum. Gordon

oh no someones posted an illness I have not heard of the name rings a bell and in my tired head enzyme comes to mind but sight too blurred to google

No, it is certainly not the normal procedure.

You haven't said who contacted you asking if you still wished to continue with your appeal, but I suspect it was the DWP rather than Atos. In any event, you should not be contacted by telephone under any circumstances to ask any questions regarding your appeal status? Once an appeal has been lodged, it is the responsibility of the DWP to reconsider their decision if appropriate, based on the available evidence without any further input from the appellant.

I don't know why the DWP asked you if there was any change you wished to put forward? If they are asking if there is a change in your medical condition after the date of the decision to disallow your ESA claim, this is irrelevant as the appeal is about the circumstances obtaining at the time of the decision and not beyond that date?

An appeal should only be withdrawn at the appellant's own volition and not at the behest of the DWP who are a party to the proceedings. Any attempt to persuade an appellant to withdraw an appeal for whatever reason should be brought to the notice of the appeal tribunal, as it could be construed as an attempt to pervert the course of justice and therefore unlawful.

Hi, Thanks for the replys. It wsa the DWP who rang me, they left a message on my phone and then i rang back to make sure it was definatley them. The guy rang me back later that day and told me his name and went throught security checks, I can only assume that they may of started doing this as they have such a back log
susan

I woul never give the DWP or ATOS a contact number as you have little or no proof of what was said.
I was asked for a phone number by the DWP when I complained to the BDC in Leeds and I replied that all communication would be by letter or email, I doubt it went down well with them but I don't care.