I have depression. I have anxiety. (This is my particular flavour of anxiety if you’re interested)
I applied for Personal Independent Payment support from the government. Why? Because I’m not independent. Because I would like to be more independent. My mental health issues mean that my life is seriously affected.
Due to my anxiety and depression I have lost touch with most of my friends (my fault, or rather the fault of my illness, definitely not their fault) and I cannot work.
I don’t want to take money that I’m not due and so I spoke to my therapist and also the DWP before I sent in my application. I didn’t want to waste their time. On top of that, it wasn’t going to be an easy thing for me to do. Writing down symptoms of mental illness is hugely triggering. It’s miserable and I needed to be sure that it was worth a shot.
We’ve been hearing a lot about PIP for mental health issues. It’s supposed to be getting better. It is supposed to be getting to the right people. I’m not the right people. My application was denied. Twice. That’s okay if it’s the way it should be, but I’m not so sure. The boxes that you have to tick to qualify for PIP seems to ignore vast patches of mental health.
So today I wanted to go through the process, I think if I had known a little more then perhaps I would have been more on my guard before going in. Perhaps, by talking about the application, the assessment and the outcome I can prepare other people who are thinking of applying for what may be ahead. I’m going to talk below about my anxiety, my depression, the PIP process and how all these things affected me. There are bound to be triggers in this for people, be safe.
The assessment was in two sections – one written and then a face to face assessment. The written was clearly not geared specifically to mental health problems but then neither is PIP. Perhaps if there were separate forms for umbrella types of illnesses then we might be able to give better information. The devil is in the details, so they say. The form was vague enough to be barely any use, hardly applicable to my condition, but still specific enough to increase my anxiety and cause me a great deal of upset. If I had been able to focus my answers on the problems I face rather than trying to fit them into boxes that the DWP understood I may have been able to explain what I lack and where I need help.
Waiting for the face to face was nightmarish. I had very high levels of anxiety in the build up to the meeting. Rather spectacularly missing the section of my form where I had mentioned that sometimes I can’t get out of bed and that I cannot get anywhere under my own steam if I’m feeling anxious I had an 8.10 appointment in the middle of a town where I don’t live. Genius. My mum called for me (they did already know I couldn’t use a phone) and changed the appointment so that someone would come to my house.
The actual meeting was fine. The lady who came was an ex-mental health nurse and she was lovely. She understood what I was saying and didn’t judge the strange things I was telling her about the details of my conditions. However it was not her job to decide if I qualified for PIP or not, she simply wrote up the interview and handed it back to the DWP.
I got a letter telling me I didn’t qualify some weeks later. It wasn’t just a simple letter but went into some detail about which criteria I did and didn’t meet.
The PIP splits into two parts. The first is the Daily Living section. You need 8 points to qualify, 12 points to get the higher rate and there are ten sections you are ‘tested’ on.
I can prepare and cook myself a meal, so 0 points.
I can eat and drink unaided, again 0 points.
What wasn’t measured: I often *don’t* eat. Not cannot but will not. If I’m depressed then I can’t see the point. If I don’t want to get to tomorrow then why eat today. I’m not good at noticing time passing when my depression is bad, it could be midday before I can manage to get out of bed and then I don’t bother feeding myself until mid-afternoon. Nutrition also isn’t measured. Binging and choosing foods are both problems for me. There is nothing in the PIP about your relationship with food beyond being able to prepare it and physically consume it.
I can manage my medication/therapy, 0 points for me.
What wasn’t measured: It’s mental health so it changes quickly and I also don’t know if I am managing it okay. Also they don’t know. Why? This is the real kicker…NO ONE TALKED TO MY THERAPIST. I had to give them the name of my primary care contact and no one asked the therapists (I have two) anything about my condition. Another point that comes with anxiety is that I will lie about how well I am doing, especially with authority figures, so that I don’t feel judged. Big problem when you’re being assessed. My therapist could have told them that. If they had asked.
I can wash and bathe, 0. I can manage toilet needs, 0. I can dress and undress, 0.
Absolutely. All of these things are not my condition and I should score 0.
What wasn’t measured: this is not a problem for me but physically taking care of yourself, washing and dressing is often a problem with mental health. Yet again, just because someone is physically able to do it sometimes a lot of the time they may not
“You can express and understand verbal information unaided. This gives you a score of 0.”
“You can read and understand basic and complex written information either unaided or using glasses or contact lenses. This gives you a score of 0.”
What wasn’t measured: so much! This is where the wheels really start to come off for me. I can understand information but I won’t access it. This is not independence. I am locked inside my condition. I won’t go out into the world to look for new information because I am scared. The world is a scary place to me and I truly and honestly believe that going outside my front door is terrifying. It’s hard to under-emphasize how difficult this part of my life is, how isolating it is, and how much it has changed. I used to travel on my own. I’d buy a ticket and get on a train or a bus or a plane and go. I would actively seek out new experience whether it was crossing the world or going to the theatre. Now I can’t go to the shops and buy ice cream. [If you would like to read what happens when I try to leave the house on my own, I wrote a breakdown of the process that I have to go through each time.]
I need to be prompted by another person to engage with people face to face, I score 2.
What wasn’t measured: the extent of this. It’s great that this problem is recognised but I don’t think it’s carried through. On a good day I still won’t answer my phone. On a bad day I can’t even answer emails (friends, this is why I’m often so crap even when I *really* want to talk to you). I won’t ever open my front door. I avoid eye-contact in public. I won’t go into a coffee shop or restaurant unless I can sit somewhere that I won’t be seen. I can’t meet up with old friends anywhere that I’ve not been before and I can’t make new friends. I really can’t. I’m so isolated that it scares me. I’m withdrawing further and further from society. Again, this is not independence.
I can manage complex budgeting decisions, so 0 points.
What wasn’t measured: again, this is about understanding, not about practice. I can understand how much something costs, how much it is worth but I often won’t spend money. I’m scared of money and I’m scared of decisions about money. I’m worried about being judged for what I buy. I feel guilt when I spend money as I’m not earning. Also, how can I spend money when I can’t leave the house to go into a shop and won’t open the door to get things delivered.
The second part that you are measured on is mobility and again you need 8 points to qualify and 12 to get the higher rate. There are only two sections to this bit.
I need prompting to undertake a journey, I score 4.
What wasn’t measured: actually, this is pretty on point for anxiety and depression, at least for my particular kinds. The thing that is missing is that I don’t just need prompting, I need accompanying. At the moment this falls largely to my Mum and my close friends. It sucks because I’m reliant on them – in other words, not independent. On a good day I still can’t use public transport, it’s now been years since I was able to get on a bus or train. On a bad day I can’t even drive. I need to ask people to help to get me out of the front door and to take me anywhere.
I can stand and move more than 200 meters unaided, I get 0 points.
What wasn’t measured: I can do this. As long as it’s inside my own home. As soon as you get to my front door I freeze and then I can’t go anywhere. I’m nitpicking here – I know (all too well) how limiting mobility problems can be. I’m not trying to undermine that in any way, rather highlighting that mental health issues should be seen in a different light.
So I score 6 points over the two different sections put together when I needed eight for each. They think I am independent.
I can’t work, I can’t go outside unaccompanied, I can’t keep in touch with my friends or make new ones, I cannot travel alone or do the activities I used to love, I cannot get around and I cannot shop.
For me, this is not independence, I feel trapped and alone.
I talked to my therapist before my application was sent in about what benefits I could get from PIP. I would like to be able to get a taxi to go out. I would like to be able to pay someone to go shopping for me/with me so I’m less reliant on other people. I would like to get a dog (this is a more complex discussion but there is a lot of solid reasoning behind it). I would like to take a course or join a club so that I can try to meet new people which I can’t afford to get to or pay for at the moment. A lot of it is about the money but mostly it’s about being told that I am considered independent without any help.
The letter from the DWP about it also stated that they would call me to talk to me about it. And call they did. Again, and again, and again. Of course I didn’t answer. A cursory glance at my form would tell them that I’m not going to answer a phone call. So my Mum called and explained this. They still kept calling. By this point I was upset. I was upset at being told I was fine. I was upset and being called so much. I was anxious about what they were thinking about me. My lovely Mum called again and asked them to stop calling. While on the phone she got so annoyed that she did actually ask them to reconsider my application. The second letter came yesterday rejecting it again.
This has become a rant because I want the system to work. I don’t want to try and trick the DWP into giving me money I don’t deserve, I just want the criteria to be clearer.
So much of medicine, so much of care, is in nuance. In seeing the discussion that needs to happen rather than running around the same circles over and over again. It’s hard to talk about mental illness. It’s hard to not feel ashamed. It’s hard to try and get help. It’s hard to admit how much is wrong. Anxiety and depression are awful to live with and it’s only made worse when talking about it makes you feel like you’re not really ill. Being told I am independent and don’t deserve help have underlined all of my worst insecurities about my mental health.
The clue was supposed to be in the name. Personal Independence. There are a lot of things that I can do. Being independent? Not so much. And the really difficult thing is that when I asked for help it only made things worse.