For anyone who doesn’t know, Disability Living Allowance (DLA) is being replaced with Personal Independence Payment (PIP).
Also if you didn’t know, it has been made much harder to qualify for anybody who is disabled, but the new forms and point system make it significantly harder for people with mental illnesses to qualify.
Anon received the same amount of DLA for about six years: Highest Care rate, and Lower mobility rate.
When she was switched to PIP the form to fill in was novel-like in its’ thickness.
A lot of the questions are biased to people with physical ailments – it isn’t so much about if you’re a danger to yourself or need supervising, it’s more focused on can you *physically* manage to communicate, feed yourself, eat, wash, dress etc.
We filled the form out and sent it off, then waited. And waited. And waited.
At some point we had a face-to-face assessment, and as Anon was manic at the time I tried to do a lot of the talking, but the assessor wouldn’t write down anything I said and kept saying “[Anon] can tell me herself”. It was ridiculous because Anon was saying how great she was, when she was actually very ill, but they wouldn’t listen to me.
This is a huge issue, and assessors ARE supposed to listen to carers / family.
Close to a year later we were told Anon would be getting the standard (lower) PIP rate. She had scored 11 points; 12 points gets the higher rate.
Considering they hadn’t given her several points they certainly should have, I started an appeal, & visited with a local charity who sent the appeal off. We then received a letter from PIP that we needed to sign so the charity could speak on our behalf, so we signed that and sent it off.
18 months later we received a letter with the same thousand page form to fill in. Sigh…
There was no explanation as to why we had to fill it in again, so I obviously assumed they had finally gotten around to our appeal. I helped Anon fill it out and, as she had started having psychotic symptoms 24/7 since the last one, her symptoms were different and her illness worse.
Several weeks later we were given yet another face-to-face assessment.
This was disastrous as Anon is too ill to do anything like that – if she can’t manage medical appointments, how would she manage an assessment where they are automatically against her?! She can’t even talk to strangers on the street for Pete’s sake!!!
Anyway, we ended up missing and having to belatedly cancel the appointment because it was just a few days after we went to A&E, and I was told it would be no trouble & PIP would be in touch to arrange another.
Yesterday we got a letter through the post, it was PIP saying they had looked at our details and awarded Anon 11 points, the same as before – one point off getting the higher rate.
This is despite the fact Anon is most certainly entitled to the higher rate, and despite the fact that her symptoms have changed drastically and worsened since the last time we filled out the form.
Also, and this is absolutely disgusting, they awarded Anon 0 points for communication, saying she *can* communicate with others – she can’t talk to strangers, often can’t manage to interact normally with her friends or family, and sometimes people can’t understand her. PIP had written out this exact quote:
“You are able to communicate, just speak faster than normal”
First of all that is so belittling to somebody with Bipolar disorder, and shows absolutely no understanding of a manic episode.
Secondly we wrote three paragraphs for that section and just one sentence referred to the fact that Anon spoke fast when manic!!!
I phoned PIP immediately and tried to start an appeal, but wasn’t sure I could after already appealing once.
Guess what? The first appeal never went through, they had all the information but they just never did it. According to them we had never made an appeal. Disgusting!
I was told someone would phone me back, and in the meantime spoke with a charity and was directed to an amazing webpage that gives out fantastic information about PIP and the points system.
From this we discovered that where they had granted Anon just 11 points total, she should actually have scored at least 26 points. How disgusting is that?
For the mobility part they had given her 4 points, when I was told she should actually get 12: “Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid” – this would mean she would be entitled to the higher (enhanced) mobility rate.
The fact that both times we filled in this form they gave Anon 11 points (when her symptoms changed between each form) shows how they will sneak you out of the higher rate.
Also terrible is that at no point do they tell you how many points you could get for each section – they say you got 2 points, but not 2 out of 12 for example.
For engaging with other people Anon was awarded 2 points, which we thought was the highest she could have been given – it actually turns out she should have got this:
“Cannot engage with other people due to such engagement causing either –
(i) overwhelming psychological distress to the claimant; or
(ii) the claimant to exhibit behaviour which would result in a substantial risk of harm to the claimant or another person. 8 points.”
This is why I urge people again to look at this site – these are the exact quotes and tally system that they use, so if you can say to them for example “I need communication support to be able to understand basic verbal information” you can not make it anymore obvious for them how many points you are entitled to.
If Anon was living on her own I have no doubt she would not be receiving PIP
She would not have managed to fill in the form, she certainly wouldn’t have been able to attend the assessment, and she wouldn’t have been able to phone them or start an appeal.
They make it so hard for people with serious mental health problems to a. get the amount they deserve, and b. be able to fight for those points.
Remember when I said she scored 0 for communication? Here is what she should actually have got: “Needs communication support to be able to express or understand basic verbal information – 8 points”
Finally for the mobility section she was given 4 points, which was “Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant.”
Actually she should get, at the very least, ” Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid.10 points” – this would mean she should get the lower mobility rate, at least.
I am writing this to show that people with serious mental illnesses are being cheated out of the help they deserve.
We struggle for money. We have had to use a food bank. Our lives are incredibly, incredibly difficult.
We are not lazy. We are not ‘benefit scum’.
My partner is drastically ill and our lives are a struggle. Anon struggles with the most basic things, and because she can’t speak to people / on the phone, it is hard for me to sort out a lot of things because (even though I’m her registered full-time carer) they will not talk to me. What do they want me to do??
We should be offered help and understanding, yet here I am having to fight tooth and nail for money from the government and for help from the NHS.
Contrary to how the media reports it, we don’t get much money.
We can generally manage very well with money, but Anon’s manic episodes often cause huge issues. Right now for example (with Anon’s last manic a month or so back) we have around £600 to our name; rent is £450 a month.
I try my hardest to manage manias and money; even though it’s hard we’ve never missed paying rent, bills, & have never had debt.
This idea that people on benefits are lazy and are rolling in cash needs to stop, it’s so damaging to those that are struggling.
When Anon was first struggling with depression, mania & psychosis, I got a job so we wouldn’t have to rely on benefits. We both wanted to work.
But when me working put her life at risk, I had to quit after 6 weeks, and I have been her full-time carer ever since. We even tried to run our own business, but again the stress was too much for Anon and the resulting mood episodes put her in danger.
After that we volunteered at least weekly, but again had to stop as her illness deteriorated.
It is not easy, and we are doing our best.