PIP Assessment – Neuromuscular

In all the cases I have personally come across I would say the answer is no. Nurse – yes. Paramedic yes, doctor – no, neurologist – certainly not. That experience has also led me to believe that the people you see usually have no in depth knowledge about MD and are there not to help you but to help the government reduce costs (sorry for my cynicism). I can understand your nerves, I would be too, my son’s recent assessment (he has MD also) was a farce and the report a blazen pack of lies. For example the report said he could lift his arms above his head, something he has never done in his life because of the MD. The report also said he used a walking stick well. He does not and never has own a walking stick. Subsequent appeals over the following twelve months have failed to take account of these lies.
You must go well prepared. There are leaflets around that deal specifically with his. The person doing the assessment will give you their name, and clinical abilities, so you will have some idea of how capable they are of understanding your problems. Please remember that they are not there for you but to ensure that the PIP you get is appropriate, you deserve it and that your mobility difficulties match with their view of what they should be on that level of benefit. Make sure you have read all the supporting letters if you have copies. Have detailed notes about what you are truly capable of doing, think carefully when answering questions. You will also find some traps built into the system. For example at our local assessment centre the building is separated from the car park by a steep incline. Everyones natural instinct is to park in the car park and struggle up the hill somehow. They will ask the client how they managed. Regardless of the answer, if you got up the hill then you are not that immobile.
You will need your wits about you and you should not go alone, as when you get home make as many notes as you can about the encounter so that if you have to go to appeal then you will be fully informed as to what happened.
Also remember that many people have gone through the assessments with ease. You may well be the same. Being prepared will not harm though.

Mike

Dear Ranald,

embayweather is correct, assessors must have a health background but this very rarely results in experience with neuromuscular conditions. Nurses and paramedics are common, I would recommend bringing information about your condition in case they are unaware of what it is.

Please do also consider contacting our advocacy team, they are able to help with applications for benefits and provide advice about face to face assessment. Email them on info@musculardystrophyuk.org to see how they are able to assist.

Joel

ranald wrote:

A small crumb of comfort to me as I await my fate…
I noticed about the assessment centre. It is on a very busy road, with nowhere to park nearby. I intend to arrive by taxi. They get away with stopping briefly in awkward places! I just hope it isn’t upstairs.
The crafty devils phoned me on a Friday afternoon, asking if I could come in on Monday at 09:00! Of course giving me no time to arrange a companion to accompany me! I told them no and secured an appointment in a couple of weeks time.

We all wish Ranald best wishes on his upcoming PIP F2F assessment.

These are very stressful!. In the last two weeks I have had two
F2F assessments, PIP and ESA, one at home one in their office.
They tried the same tactics giving me way less than the required
weeks notice but turned it around and told them to come
whenever they like to see the large range of adaptations
and gadgets I need to run my life.

Was so stressed at both these F2F’s that I was so trying to
get in extra information I did not ask if they were Doctors
or not. Actually they were so young they could not have been
doctors! One obviously knew nothing about MD the other a little,
maybe this might be in my favour, it might will be. I feel
they are way behind schedule in the DLA to PIP transfer as
we have had reported to us so are taking short cuts.
As I had been on DLA as long as Ranald part of me
is glad the tension of waiting is over.
Big thank you to the members of this forum who
gave me the knowledge to make my best and most
valid points in these F2F appointments.
Once again good luck to Ranald in his F2F.

ranald wrote:

You are too kind Mr Fox, I am very
We all know why these punitive assessments are taking place, but even still, I struggle to get my head around the sheer waste of time and money! (Very lucrative for the vulture private companies no doubt).

Very good points. Very plush offices, no expense spared. Strangely long
corridors though (not very subtle are they?).

You echo the thoughts of many, that it is a contrived points system
designed to trip people up over small points and find ways to
exclude them from benefits rather than give a true picture of
a person’s disability. Can I pick up an empty box? Can I
push a button? Ridiculous!
Even IDS described it as a “cliff edge” test. Your whole future
for the next three years can be decided by one point! You can easily
lose a point for many reasons, mostly not your fault, just not a fair system.
If there is any truth to the rumours that assessors are incentivised
to deny you points even worse.
At least I was able to get all my points down in writing on 28
extra sheets to their form and can get that referred to
if necessary in the future.
My elderly GP has just retired after a wonderful life helping
sick people. He knew his patients totally “inside and out”.
He would always be fair, responsible and moral. How
moral is a “snapshot” points system fueled by
incentive and bias?
Ranald will remember all the things we have discussed
on this forum and just like me put across his
true situation clearly and bravely. I feel
he will get a good result!