representative needed PIP : friend with severe... - Mencap


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representative needed PIP

kennio999 profile image

friend with severe learning difficulties and becker muscular dystrophy in tertiary stage is being called for a PIP health assessment - he needs someone there with him to field questions which will be aimed at undermining/tricking him -any suggestions - is prepared to make a donation to any organisation ..... he cant even lift the form! It is very very cruel.

12 Replies
Sarah_Mencap profile image

Hello kennio999

Your friend is very lucky to have your support. PIP assessments can be stressful but there is a lot of information our there about how to to get ready.

Your friend can take someone along to their assessment. This could be a partner/parent, someone else in their family, or an advocate/ social worker. Do you know if they have an advocate or social worker who might be able to support them with this?

Some organisations, such as CAB ( ) may be able to help with appeals.

Scope have a lot of information about getting ready - They also have a great video:

It might be a good idea to talk to one of our advisors on our helpline. You, or your friend, can give them a call from 9am to 3pm, Monday to Friday on 0808 808 1111. It is free and confidential. They will know more about any support you may be able to get near where you live.

Other people on here have had these assessments. It would be great to hear more about how they prepared and who they took with them.

Please let us know how you get on.



Age UK may be able to assist,that is if they have someone with experience of working alongside slow learners...this is very important imo because s/he may be able to field deliberately trick questions because and lets not kid ourselves this is about money for Atos and Capita and their people receive bonuses as they do for stripping people of benefits within what is a wholly corrupt system ,as important as not involving anyone from the family who is emotionally involved because though they might deserve it being reprimanded for their poor ethics, will not assist the case......

Good luck to your friend, I do hope he finds the right support. I will be interested to hear how others on this forum prepared for this daunting assessment - my son will turn 16 in December and has already received a letter from DWP saying he will be transferred from Disability Living Allowance to PIP then.

Best wishes


Shue profile image
ShueCommunity friend in reply to

Hi, we transfered about 18 months ago. I went prepared with written documentation from any health professional we had encountered over the past year. I spoke on my sons behalf and when she did pose the occasional question to him he did what.he always does, sat looking at her with a 'aint got a clue what you just said love 'expression. I was annoyed that we had waited for over an hour with some very undesirable people and began asking why wasn't there a register for people like my son who's condition would never improve, why are they waisting valuable ressources by assessing again and again? I kept on why this, why that? Think she got fed up of me.

Just be prepared for the most ridiculous questions, always relay how it is worst case scenario, stand up for yourself and son but don't loose your temper. Remember you know more about your sons condition, needs, behaviours, demands etc than they ever will! Good luck.

in reply to Shue

Oh gosh I didn’t realise we would have to be assessed repeatedly, that fact escaped my attention. Oh dear. Sounds.... unpleasant and I’m so sorry you and your son had to go through it. Thank you for the tips, I shall start gathering reports now. Did you include your son’s EHCP in the documentation? My son will not understand any question out to him either, he’ll probably try to hold their hand though (he’s too friendly for his own good!) but I’ll stop him if that’s the case!

Thank you for your advice, it is most appreciated. TTT x

kennio999 profile image
kennio999 in reply to

i think its important to tape the interview.I think they do lie. They are not remotely interested in the wellbeing of the person they are interviewing or they wouldnt be working for these opportunists.... the idea is to trick people into saying they can do more than they can and if they cant answer to put words in their mouth and so reduce benefits for which they receive a personal bonus.Its a scam rooted in dishonesty aimed at persecuting people where the Tories could save money by keeping all assessments in-house and by removing 10,000s who wont recover from the procedures ..... be ready for an appeal which is why assembling information is important

in reply to kennio999

Isn’t it dreadful we have to act so carefully around these “professionals’. I do appreciate some unsavoury characters may try to scam the system but on the whole don’t we deserve compassion and respect? It makes me mad - and sad that we are treated with suspicion.

Thank you for advice re the conversation taping. Do you have to state your intention to do so before the interview?

Best wishes


Charlie2750 profile image
Charlie2750Community friend in reply to kennio999

I do believe you are being very suspicious and unkind about the whole process.If your friend has the problems that you say the assessment should go straight forward.The idea of PIP assessors is not to trick you as you say but to get an accurate assessment and your friends health professional should be able to help.Please don't be so negative it will frighten everyone when the process is simple.

I have a 32 year old son with severe learning disabilities and transferred from DLA to PIP. I filled in the forms which you can find the Assessors Handbook and look at the detail needed.He cant cook a meal , he needs help with bathing and brushing teeth and is not safe when out alone(he cant cross the road so doesn't go out alone) He scored maximum points on mobility and care and he did not need to have a face to face assessment.They took professional assessment from an occupational therapist which was many years old.A learning disability is for life and doesn't get better.

Shue profile image
ShueCommunity friend in reply to

Hi, re the assessing again and again bit I was refering to the fact he had previously won an appeal for DLA awarded indefinately and now it had changed to PIP was being assessed again. He was out of education by that time so the EHCP wasn't needed for his case. You write clearly and consisely so I'm sure you will make a good case for your son. Let him hold their hand, let them see the true him. Best wishes.

in reply to Shue

Ahhh sorry, I misunderstood, my apologies. My son has been home educated since 6 years old. We continued with the EHCP thinking it would help (it has not) but it does document everything my son cannot do for himself so I will use it.

Oh thank you 😊 yes, you’re absolutely right, I’ll let him see the real young man, it will be hard to stop him in any case 😁.

Sincere thanks for all the info. Best wishes TTT x

Hello. I work for Mencap but my last job was at Muscular Dystrophy UK. MDUK have a very good information and advice team that you may want to contact. Tel:

020 7803 4800

Email: Best of luck to you and your friend.

My son had to go for one at 16. I was surprised as none of his peers with very similar difficulties had to. My son is non verbal and has little understanding. It was fine. I had to answer the questions. It was pretty quick and they did apologise for calling him in. As with DLA he was awarded birth components at enhanced rate.

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