PIP is a new benefit rolled out by the government to replace disability benefit and this is my experience of having to go through the system to get the payment.
I’ve been disabled for nearly 30 years now and was awarded after 5 years life award of the disability benefit of the amount that allows me to use some of the money for motability so I can have a car equipped with hand controls, so I can be independent and be able to do things like shopping and getting myself out of the house. I also get the middle rate of care component to help with my personal needs,
Before I got the motability payment, I was stuck in a flat on the top floor, not being able to get out for weeks on end. As I have no family, I was dependent on friends coming round to see me when they could. Being housebound, is depressing and can bring on depression and isolating to the extreme. It’s almost like being in solitary confinement or what I could imagine it being like.
ONE MRI SCAN OF ONE PROLAPSE
In 1995, I was in extreme pain from a prolapse disc that was bad, I had waited 18 months for an MRI scan to confirm the prolapse, and then had to wait for an operation. While all this was going on, I was trying to hold down my job with a good company that were extremely understanding, a home and a family. After the operation, my life changed overnight, I had lost sensation in my legs and as the months went on my health got worse, I lost my job, my home and my family.
Within a year I was wheelchair bound, in and out of hospital and had nothing but suitcase. I had to sit interviews to explain how my disability affects me on a day to day basis, the people that interviewed me were understanding, courteous and treated you like a person.
My health was what it was, and then 13 years ago roughly, my spine began to prolapse and the same disc, not once 7 or 8 times over the years, which meant I had to have an operation each time. After one operation the day after I had a heart attack and was moved to CCU and had to have an angiogram to fit a stent.
XRAY AFTER DOUBLE FUSION
My spine got worse and more operations till the point I had to have a fusion and it turned out to be a double fusion, which is a major operation. I then had problems with the wound healing and had a whole in my back for 3 months, and having to go to hospital each week to have a special pad on the wound to help the hole heal over.
WHOLE IN MY BACK THAT TOOK MONTHS TO HEAL
Since then I have had a second heart attack and two angiograms and another stent fitted, and another prolapse in my neck and had to have another major operation to fit an implant that's like a ball and socket. There was a risk with this operation that I could lose my speech due to the operation being done from the front and all my vocal cords and other organs having to be moved out of the way to get to the vertebrate. I had lost my voice for nearly 3 months till it regained use, but has left me with problems of my airway closing over while I sleep and have to use a CPAP machine to keep my airway open while I sleep, otherwise I’m at risk of choking.
IMPLANT INTO MY SPINE OF MY NECK
Then I December 2018 I had another disc prolapse in my mid-spine, and because of where it is, it can’t be operated on as its classed too dangerous.
For years I have had to take huge amounts of strong pain relief that is addictive if not managed properly, I’m in constant pain. Then in February I was involved in a vehicle accident where a van reverse into the back of my car that was stationary at the time, this left me with pain down my left arm that had already problems from the implant in my neck was put in.
During all these years, I have not asked for more money for my care, I have made do and just got on with my life as best as possible.
I knew that at some point I would be contacted about being moved over to the new benefit, but I didn’t know how it would work and more to the point how I would be treated. I had seen on the TV stories of how some people were dealt with and left without money for weeks, but I hoped by the time it got round to me, the government had made significant changes.
The first thing I got was a letter saying I had to ring a phone number to go through a phone interview.
When I rang the number it gave some information about what would happen in the interview, but I was in for a shock.
The man I spoke to was abrupt, and was clearly reading from a script and had no communication skills whatsoever. He said to me that the questions were YES or NO and did I understand this? I said ok.
As he began some of the questions were straight forward, but then some were very open and I would ask what did he mean, the reply back each time was ‘please give a yes or no answer to the question as you were told at the beginning of the interview.
This man was clearly not going to help me by explaining what the question was in a more understandable way.
I got through the interview and was told that forms would be sent out to me to be completed, these forms are no different to the ones I had to complete all those years ago, so why do an interview in the manor it was done?
My thoughts are that for people that find it difficult to communicate or understand technical medical questions, might not give the right answer that they need to give, and would be scored insufficiently within the phone interview, and would fall through the net of the system and not get the help they are entitled to. The phone interview is brasc, uncomfortable and makes you feel undeserving because you have a disability.
I understand that there are those that have milked the system and don’t actually qualify for the payment, but there has to be a better way to see people and to understand that for people that have recently been made disabled, it's a huge shock to them, their family and have to adapt to their situation. We don’t ask to be disabled and should be treated with more humanity and understanding that we are going through physically and mentally.
When you complete the forms, you are asked to supply details of your GP, surgeon and health professional so that they can give evidence on your health and disability.
It’s been two months and I saw my GP and I asked him if the W&P had been in contact with him for my medical records or his views on my circumstances? I was shocked to be told that he had not, and that in his experience with other patients, they also had not been contacted for their info. He went on to say that in his experience that most had to go through the appeal process to get the payment.
I then contacted my surgeon that has known me for years and knows my body better than I do, and he had also not been contacted.
What is the point of asking for references if they are not going to follow up on them and for people like me that have been disabled and have been on disability benefit for over a decade and the knowledge that my circumstances are not in any form going to get better but worse as time goes on, being looked at in a different way as someone that has been awarded life award of disability benefit and can be verified by their own records and pass interviews, and new contact with GP and surgeons, so to save time in having to go through the whole process as a new claim?
The final stage that I’m still waiting for, is to have a face to face interview. I have found out that this is carried out by an outside company, that employ paramedics or nurse practitioners. How does there qualification cover all forms of health disorders, doesn’t have the paperwork from GP’s or surgeons to look over and are there to make a report that then goes back to the department W&P for them to decide who gets what and if it's the right amount of financial support they need?
They don’t understand what it’s like to have to put you personal life on a table to viewed by someone that doesn’t know you, doesn’t know you medical history, the upset it causes and the feeling of having to feel like you're begging for something that you are entitled to. It’s inhuman and degrading!
Since this outside company will not have my medical records, I have asked my GP to print off every communication from my surgeon and heart specialist dating back to 2013. When I go for the interview I will take all my medication and the file of documentation to show who ever it is I’m to be interviewed by and make sure they understand what all my medications are used for and for them to look through all the letters that I put in front of them. If I had it my way I would record the interview, but this has been tried in the past and people have been penalised for trying to do this, which to me is wrong and seems like they are scared of been shown not to do their job right. It’s an interview and it should be recorded, just like when you wring them they tell you that the call is being recorded and you have to accept that, but not the other way, where is the justice in that?
I’m one of thousands that are legitimate people that need to have this benefit that are dually entitled to. I worked all my life until I became ill, I didn’t ask for this life. I wish I was able to work but my health is poor and knowone is going to employ someone that can’t guarantee they will turn up to work, or can’t work to a schedule. In the early years, I did charity work as a mediator to help my local community, but because of being in a wheelchair, it meant I could only do certain cases, but my health got the best of me and I had to give that up. Having a car allows me to get out and I have a hobby of doing photography, which I’ve had work exhibited, but I do it for myself and keeps me active as much as I can, when pain is manageable, but if I go out for a day, it takes me three days to recover in bed. I have a bungalow that purpose built for disabled people like me, that I had to fight to get, which I look as my place of where I will end my days.
This year has been terrible as I’m lucky if I manage to get out of the house for a day in one month, as my health has deteriorated more than what it was last year. I have physio every two weeks that is something new to help deal with the new prolapse in my spine to help me manage the pain. Im at risk of more prolapses, I’m also at risk of another heart attack or worse a stroke. My life is day by day right now, yet I have to prove all of this to a stranger, someone that I’m just a number to, that probably doesn't care one way or another. People with real disabilities should be treated with respect, understanding, compassion, and not made to feel worthless and a blight on society.
There overhauling a system to supposedly make it easier, but for who? How many have to go through the appeal system and if the number is more than 50%, then the system is not working, its causing heartache, misery, depression, anxiety. We are not the only ones suffering as social care of our elderly is failing, and they have the same suffering. Children are having to look after their mother or father, instead of having a childhood, a life without worry of getting right looking after their parents.
In recent weeks the government has fallen apart on all sides of the bench in the house of commons, we are living a nightmare and the suffering can only get worse. I’m only highlighting my problems, but change has to be for the good, done with respect, humanity and compassion, that would go a long way.