PIP- Step 1

aka Personal Independence Payment (the new DLA)

This is my experience and my perspective on the application process which may not be what everyone experiences.

The time finally came to apply for PIP. That benefit that you read and hear of so many horror stories about. The benefit that so many people seem to want but can’t get. I have held on for so long not to apply for this but realising now that I need to, as I can’t work as much as I did and can’t walk to places like I used to, constantly using my car to get places where I once may have walked or jumped on the bus.

Watching programs on TV, and reading newspapers and magazines you see all these people trying to apply for PIP because they think they cannot work due to back pain or similar yet can go out running, or to the pub etc (not everyone is like that but there are some and for me I feel like they are the ones who kick up the biggest fuss when they get rejected). I was feeling a bit daunted about filling the forms out because how do you put into words the sheer exhaustion, terror, pain you feel most days but only have a small box to write in. How do you write your life in words?

I started off by gathering all the bits of paper, prescriptions, discharge letters, care plans together so I had all my information together. Im not sure if it is a good thing but the day I filled out the PIP form I had been up all night with my breathing- or difficulty breathing so was exhausted, irritable and feeling very low which I guess was good as it made me really think about the questions I was being asked and how did actually do the different tasks in the actives of daily living.

It was a real shock and felt like I had been thrown from a great height when I after I thought I completed them form and read over my answers I saw just how much I adapt what I do because of the effect my chest has on me, but not just my chest but also my dyslexia, issues with my eyes and allergies (which is a whole other post because things have been changing with them!).

Some parts of the form I found quite odd for example the bit about walking. They wanted exact numbers but how do you explain that you can sometimes walk and are ok, but other days just getting across the room is a challenge and can leave you gasping for air. It is also trying to explain that walking a distance leaves you out of breath so you stop and catch your breath, take inhaler but then can’t walk that same distance again. This can also be hampered by things you are exposed to for example car fumes, cigarette smoke, high pollen counts, strong perfume, the list is endless. If i was to walk around in a bubble all the time it would make life easier but thats not possible and its not possible to know what you are going to be exposed to on any given day. When a conditions varies so much it is really hard. How do you write this paragraph in a small space on a form. You can’t.

One thing I did notice was being honest. You need to say it as it is. Don’t try and make it sound worse than you are but equally don’t make it sound better than you are. They need the true picture of what it is like the good the bad and the ugly! Many may just tick the box saying they need help with everything but not say what help it is they need. For example the washing and dressing part I ticked that I sometimes need help. When in hospital there is no way I can wash and dress myself as i just don’t have the breath but then once i do have the puff I use a chair and my portable nebuliser which I use mid way through washing and dressing. At home I have a stool in my shower so can sit and wash and then use this to help dress to. For the medication part I get my tablets weekly from my pharmacist not because I am not trusted with my meds but because there are just so many tablets. They are put out in a weekly dosette for me. When I feel rubbish it is hard to track what pills you have or have not taken and if you have taken the right dose so this is a huge help. It also means I have a whole free cupboard in the bathroom now which was previously filled with boxes of tablets!

I also made my GP, asthma nurse and consultants aware that I was applying so they would know and they didn’t get letter requests out of the blue wanting information about me.

I didnt send the form straight in after I completed it. I held onto it for a few days so I could read over what I had written when I was feeling a different way to see if there was anything I had missed. I also was not sure what information to include with the form. They do say they don’t want multiple copies of discharge letters, and outpatient appointment letters etc so I decided to send my care plan in which highlights the difficulties in treating my asthma when I present acutely, I also had 2 discharge letters from my most recent admissions- one being from when I ended up in intensive care and the other was high dependency but they both showed the way my asthma can be unpredictable and the most recent one included the difficulties with my allergies so that was why I put two in. I enclosed my repeat prescription list which also had the dates of last requested on it, i felt this was important as it shows that everything I am prescribed I use regularly and are not just on the list for use once in a blue moon (although that would be awesome to not have 34 medications which I need on a daily basis). I also included the occupational health reports from my most recent meeting and the letter I received from my boss after I had a return to work meeting with them which highlights the changes which have had to be made to my job because of my health and how my sick time can’t be supported long term (for me the fact that I still have a job i am over the moon about but i know there will come a time when enough is enough and I need to stop working which terrifies me- not the fact about not having a job but the fact that asthma has been the reason that I can’t work). I also included my dyslexia report which spells out the problems I have and what I need to correct this. A photocopy of my blue badge and disabled persons bus pass was also included.

The process for the PIP application so far has been ok. I am thinking that because what I have written is reflected in the various letters and reports I have enclosed. I know they will want to get in touch with the various healthcare professionals involved in my care as well to get their input and view on my health and situation.

It is then a waiting game for about 6 weeks to find out if you need a face to face assessment or are awarded PIP on the merits of the evidence they been provided.