Husband refused PIP

For information and discussion about benefits
Hi there, firstly I hope I am posting in the right place.. forgive me if not. I have just joined today after searching for support online.

I have been my husband's carer for 6 years now. He suffers from Asperger's. He has been receiving high rate care and low rate mobility DLA for 7 years and I currently receive Carer's allowance for caring for him.

He had his PIP assessment on the 19th of October. I attended with him and as soon as we left I was planning on making a complaint, but wanted to hold out until the decision to do so. Not sure if that was the right thing to do. We received the decision today and husband is not at all entitled to any PIP, he scored 0 on everything apart from "planning and following a journey" and "mixing with other people" - for which he scored 4 and 2 points for respectively. The text following this explains that because he can drive a manual car, shop online, and is not receiving specialist mental health input (completely untrue), they have decided he doesn't need PIP.

To say I am shocked is an understatement. It feels almost as if we've received somebody else's paperwork. I monitor all my husband's daily activities, he is unable to budget, unable to cook for himself due to risk of self harm, unable to go out alone, he cannot read or comprehend complex sentences, needs prompting to eat, and needs help when talking to other people due to constantly misunderstanding other's intentions. This was all explained. He also sees mental health professionals after recently being referred back into the system, he was discharged due to withdrawing himself and missing appointments (something I have taken over since) and I sent in supporting evidence of his medication, assessments and gave contact details for his GP and psychiatrist.

I wanted to ask - is it normal for carers to not be allowed to speak at the assessments? Because my husband has communication problems in regards to explaining his problems to their full extent, I usually explain his issues for him but as soon as I entered the room I was told "you cannot answer any questions" and was shut down whenever I tried to say anything. The assessor also refused to write certain things down - for instance when he asked about toileting issues the mention of all toilet trips needing to be monitored was said to be "completely irrelevant to this question". He even laughed at some points when my husband was describing violent behaviours and called them normal! I think the guy was a nurse but don't know what he specialised in, he seemed to only focus on physical ability. It's also noted in the decision letter that my husband appeared calm at the interview - when infact he cried at one point due to confusion and anxiety. We left the interview and my husband was extremely distressed, and is now suicidal after today's decision letter. I am terrified for the future. I know we can appeal but is it usually successful? I am not feeling very positive today. I cannot afford to care for my husband without carer's allowance, without PIP we cannot afford to live... Christmas is going to be very bleak this year! I am terrified my husband is going to kill himself, as much as I safeguard him he is a big man and when determined to do something, it is difficult to control him.

Is it usual for evidence to be completely overlooked? Is it usual that they completely disregard what is written in the original PIP paperwork? I was very thorough.
Hello Jessica and welcome to the forum.

I am sorry to learn of the difficulties you are having but, unfortunately, I don't know enough but PIP to be able to advise you (although there are others on the forum who have had similar problems and I hope they will be along to advise you later).

Personally I'd suggest that you contact the Carers UK Adviceline team as they are the acknowledged experts on all matters related to benefits and caring.
Need expert advice? You can talk to the Carers UK Adviceline five days a week, no matter where you are in the UK or how complex your query is. We do benefits checks and advise on financial and practical matters related to caring.

0808 808 7777
Open Monday to Friday, 10am to 4pm

The Carers UK Adviceline also includes a listening service, there for you to talk through your caring situation with a trained volunteer who understands what you are going through. Available Mondays and Tuesdays, from 9am to 7pm.
If you can’t get through on the phones (lines are often oversubscribed) then send them an email, they’ll usually get back to you within 3-5 working days.

This link to the Carers UK Factsheet on PIP may also be useful ... ce-payment
About halfway down it details what steps to take if you have been refused the benefit.
Thank you. It's incredibly frustrating that we received this letter on a saturday, it's almost as if they do that on purpose to increase suffering. I'm not sure how I am supposed to deal with my husband this weekend, crisis team have been wholly useless
Jessica_1611 wrote:Thank you. It's incredibly frustrating that we received this letter on a saturday, it's almost as if they do that on purpose to increase suffering. I'm not sure how I am supposed to deal with my husband this weekend, crisis team have been wholly useless
Jessica if your husband can't calm himself down and you are really worried I think I would suggest calling an ambulance and getting him to A&E - I know that others here in similar situations have done just that. There should be someone from the mental health team on duty at the hospital. Alternatively you might consider ringing the Samaritans (they don't only deal with people threatening suicide) who may be able to suggest some short term coping strategies to, at least, see you through the weekend.
Hi Jessica, make sure you appeal, because many appeals are successful. Be very conscious of the strict deadlines for appealing. If you don't have it already ask for a copy of the assessors full notes. When I applied for DLA mobility and was rejected, I saw the assessors notes, which were totally ridiculous. After going part way through the appeal process it was finally granted. The CUK helpline is brilliant, be sure to contact them asap.
Thank you for your replies. I will be contacting the helpline asap but another quick question for anybody kind enough to help..

I have drafted a letter for the mandatory reconsideration, I have worded it as if I am talking about my husband and not him talking for himself. Is this okay or does it need to be worded in first person? He cannot write for himself so I assume even if I worded it in first person I would need to include a note saying I wrote it with his permission, but would prefer it this way. I don't have power of attorney and I am not his appointee currently (I was not aware of these options before this PIP refusal)
I think that if you were to add a postscript at the bottom of your letter along the lines of "I have read and approved the above statement written by wife" and get your husband to sign it that it might be OK, but still please check with The Adviceline team.
I am new here today I have applied for pip for my wife after hearing of your horrible experience I think I will take a tape recorder with us because this seems disgusting how people can be so callus you would think its their money there giving away hope you get some joy from them..............
Chris if I could go back I would take a tape recorder in with me. I am furious that the assessor has lied about so much of what happened and what was said.

For instance he tested my husband on reading a sign saying "pull to open" - but he couldn't find or provide a more complex sentence for my husband to read so chose to instead lie and say my husband can read and understand complex material, when he cannot at all. Easier to lie I suppose. Remembering the guys face laughing at us makes me very cross. This whole system is a joke.
Hi All

I am in same boat just found your posts my husband was refused PIP last week and he is aged 67 having been on long term high rate DLA with so many medical problems. He was 64 in 2013 when PIP was being brought in so he does not qualify for missing out as he had to be 65.
We will lose money and mobility car very soon, I agree jessica with so much you have said I was not allowed to speak at his assessment with a very bossy woman a nurse of 46 years she made a point of telling and that she had only nursed dementia cases of elderly,even when my husband was obviously in pain and distressed all she wanted to do was stop it and rearrange which he did not want, needed it over and done with. We had home visit as DWP arranged it saying by letter they realised due to his problems could not attend venue, yet according to letter of decision it was said " you drive a car and planned journey to venue unaided" because of this cannot award you mobility.

When the decision arrived I was in total shock could not stop crying and shaking as my husband has just come out of hospital due to Pneumonia and a fall badly bruising his ribs and I am his carer and was dealing with this and to add our son of 17 is finding life hard trying to get apprenticeship, he immediately wanted to leave and get a job to help money wise which maybe at time I did not deal with it well shouting and getting distress, its not something I want for him a dead end job with no prospects and will later hate us for not having a chance of a career. He now and I have calmed down and will not be leaving college.

Anyway regards the decision it was a complete pack of lies and yes the more I read I thought is it someone else they wrote about. I have phone requested a mandatory reconsideration and requested a copy of assessor report at present I have had to ring 3 times a case manager was supposed to ring back within 3 hours of course it never happened and they are not helpful, today said letter was sent by 2nd class so will not get here I expect until next week.
I did not know who to turn too my husband went into melt down ~ I was so scared he would end up back in hospital. I tried my doctors as the managed had helped us with the form, but even though they were shocked could not really offer any help apart from supplying 3 years of medical history and did suggest a local person who fights these cases, sadly they did not know that this person is only interested in money and I learned after paying £50 as a donation to my cost is unreliable and was supposed to visit today rang and said had flue for a week funnily he seemed ok 3 days ago when he took my money and he said had been ill for over a week after I
tried to explain I had phoned DWP he got angry and said I should have left it to him and said you need to chill you too stressed, which I found offensive I said I had good reason to be stressed mentioning above he just said I cannot help you l'll give you money back , I said ok you do that and he put phone down on me, I do not expect to see my money again.

I have tried Citizen advice but problem is as its not my claim my husband has to speak to them which he cannot do or go to their place.......they were nice but it does not help me at moment to cope, I also did consider asking about being made appointee to DWP this involves yet another visit to assess my husband and he does not want them near him again he cannot understand why when I have sorted things before it usually only involves him giving verbal permission for me to deal which again does not help me cope.

So now I am going to try and write a letter on his behalf challenging both decision and report and hope for best. Based on what both have said and hope it might make them think again.