Should I mention PAC's concerns at assessment

The Public Accounts Committee points out the concerns it has with physiotherapists pronouncing on rare and fluctuating illnesses and I have noticed, after reading about people's experiences, that those with serious autimmune diseases seem to fare badly at assessment.

I had already decided that I would ring ATOS when they send the date of my home assessment, just to ask if they could 'revise' this body of diseases since no knowledge of them would render the thing pointless. Do you think that this is a good idea and equally, is it a good idea to mention the PAC's report on the woeful inadequacy of some assessments, or would this inflame them?

Hi Scramwag

I understand and share your concerns about physiotherapists and their lack of understanding of autoimmune disease. I have experience of this myself.

Having said that, I honestly don't think you would endear yourself to ATOS if you suggest that their 'medical professionals' are anything less than that, and therefore unable to decide upon your state of health. It is their decision to make, unfortunately.

What might be useful is to gather together any recent (short!) studies of your particular disease and enclose either the notes or your precis of them along with your completed form. Unfortunately you can not make anyone read about your particular illness; I believe the medical notes referred to in making decisions about both common and rare ailments are several years old (if you read through the guides you will find the exact year referred to).

All you can do is explain how your illness affects you, and in particular how the treatment of your particular illness affects you, at your face to face interview and hope that your assessor does actually have some insight to autoimmune diseases.Some of the treatments are harsh in the extreme, and I think it needs stating very clearly just what the side effects can be.

If you discover afterwards that you have been (in your own opinion) wrongly assessed, THEN you can ask for MR and/or Appeal and enclose all the supportive evidence and any new advancements in the treatment of your particular immune disease.

I realise that you must feel extremely worried and angry at the way these decisions are arrived at; I can only suggest that you really hold back from any harsh criticism until you have had your assessment and have all the facts at your fingertips.

Good luck with your assessment.

Scramwag

They are not interested.

i to have a very rare disease but with no fluctuations, less than 600,000 worldwide .. and in theory should qualify under substantial risk,

In practice all they want to know is how your ability of "doing things" is affected matched against the descriptors . which is then matched against supporting medical evidence.

i send them printouts of publications by the Scientific community, top nurses & doctors. incase i am refused then at least MR & more importantly Tribunal will have full discloser .

I do make a point of explaining how rare & unheard of .on the forms.

And i would verbally speak up to them about it, if it were correct for my own particular circumstances .

My main aim is to make sure my medical evidence supports my answers and i get the award. because i know for a fact i cannot live on fresh air !!

i know what you mean though by these HCP having a lack of understanding on rare conditions But then so did the dwp & the doctors who were sent out under the old system and still do under this new one.

Its all about matching your ability's or as i like to say Lack of abilities to the questions and backing it up with medical records.. dot your i's & cross your t's

Normally I never add to a thread where I'm not the OP, or unable to add anything to the moderators answer. But I've also had recent experience of a Capita health assessor (cited profession as a physiotherapist on the PA4) ignore a serious autoimmune disease. Equally, so did the DM when a MR request was submitted. Although the decision was not challenged due to the award changing for other reasons; however, the decision cost 12 possible points for daily care.

Autoimmune disease in all its medical guises is completely misunderstood not only for PIP, ESA purposes, but also many GPs fail to understand the full impact this condition has on care needs.

cats6 wrote: Scramwag

They are not interested.

i to have a very rare disease but with no fluctuations, less than 600,000 worldwide .. and in theory should qualify under substantial risk,

In practice all they want to know is how your ability of "doing things" is affected matched against the descriptors . which is then matched against supporting medical evidence.

i send them printouts of publications by the Scientific community, top nurses & doctors. incase i am refused then at least MR & more importantly Tribunal will have full discloser .

I do make a point of explaining how rare & unheard of .on the forms.

And i would verbally speak up to them about it, if it were correct for my own particular circumstances .

My main aim is to make sure my medical evidence supports my answers and i get the award. because i know for a fact i cannot live on fresh air !!

i know what you mean though by these HCP having a lack of understanding on rare conditions But then so did the dwp & the doctors who were sent out under the old system and still do under this new one.

Its all about matching your ability's or as i like to say Lack of abilities to the questions and backing it up with medical records.. dot your i's & cross your t's

Thank you for your input. I would just like to clarify that the OP seems to be speaking about PIP (as they referred to ATOS) where there are no 'Substantial Risk' criteria.

Thanks for your reply, I just noticed a recurring theme in peoples' accounts that certainly suggests that people with rare autoimmune diseases seem to do rather badly with the private contractors.