#cripthevoteuk

From Wales

I don't usually like to get too political but with the election coming up I felt it was important to share my experience in the hope some people will re think their support of a gov who seems determined to undermine the NHS and disabled people. 

I was born with severe bilateral congenital talipes equinovarus - basically both feet turned in and down (aka severe clubfeet). 

Unfortunately as a child I didn't receive some of the more successful treatments e.g. Ponsetti method, but over the years I have had frequent surgical and non-surgical intervention. However, despite best efforts, I am still left with restricted mobility in my ankle joint and also osteoarthritis. Unfortunately, this had led to secondary issues of back, hip and knee pain and it also severely affects my walking. And, being totally honest, my disability is a large factor that has contributed to me experiencing depression and anxiety too. 

Most of the time I do try to get on with it , and will try to do things like go for days out etc and I try to work (on reduced hours) because I want to lead a 'normal' life like anyone else and be as independent as I possibly can. I was brought up to try my best, get an education and a job to support myself - relying solely on benefits was not an option I wanted. 

But, unfortunately,  it's not always that simple. Every time I leave the house I have to consider how far I will be walking, the terrain, gradient, opportunities for rest and also if there is parking close by. For 'big days' like a wedding or a trip out, I make sure I have nothing else planned for a while after so that my feet can recover, as quite often I experience pain, stiffness and discomfort after the event, as well as during. 

I rely on my family to help me with daily things like cooking, cleaning etc and more e.g bathing/dressing if having a bad day. I also rely on my automatic car (can't drive manual without adaptations) and the blue badge. 

While it is by no means as 'bad' as what others may have to deal with, my disability does affect me on a daily basis and I have relied on the support granted to me INDEFINITELY by Disability Living Allowance- which allowed me to have a Motability car. It also paid for the amount of wide fitting supportive shoes I have to buy as I wear through the heel of even the most supportive shoes every 5-6weeks. 

However, since the introduction of PIP, I have been reassessed to see if my disability 'fits the criteria' for support. I had to fill out endless forms and provided masses of evidence to support my claim, some of which was from a professor in this area who treats my feet. All of which I had already done when claiming for DLA in the past. 

I then had to endure a face-to-face "assessment" - a term I use lightly for this experience. What followed was a series of questions designed to 'catch people out.' I was also asked to do a series of hand grip tests (what relevance to foot disability?) stand on one leg (which I could not do) reach my hands over my shoulder (again, relevance?) walk approx 4 metres (with a limp!) and then sit down.  

At no point did the assessor LOOK at my FEET (which are clearly scarred and disfigured) despite me offering to show her. She also asked me to explain my condition as she hadn't heard of it before (what!?) 

What followed this frankly belittling experience was her summary of findings and a decision. They were not going to give me anything! I also had to give back or buy my car, which was a huge blow. I opted to buy it as I need it to get around.

After reading her summary, my emotions got the better of me, as there were several inaccuracies in there (e.g. She said I could crouch- she never asked me to crouch. If she had, she would have seen that it is a physical impossibility for me as my ankle doesn't move that way) She also said there was no disability in my upper or lower limbs! (Last time I checked, feet are definitely classed as lower limbs, or have I missed an important anatomy lesson?) 

There were also some downright lies - She interpreted me saying that I occasionally attend the pool on doctors advice as a non weight bearing way to strengthen my core muscles as 'she regularly does sporting activities!' -Anyone who knows me knows that I do not do sporting activities, and have been advised against weight bearing activities e.g running and sports. I was even excused from every single P.E lesson at school so I could attend physio instead.  It made feel me feel angry, but also small and like I had done something wrong. It made me feel like I was making a big fuss over nothing and that I should just suffer the disability I have had since birth in silence as 'they' had deemed it not bad enough. 

So I appealed, with the support of the Citizens Advice Bureau, who were great. I clearly highlighted the inaccuracies and lies and even went through each point on the marking criteria to put in how many points I should have had (and provided evidence for it). 

Unbelievably, the appeal was unsuccessful! So I went for a tribunal. Reluctantly, if I'm honest, as by this point I was utterly defeated by the process to prove my disability was bad enough - to the point where I had anxiety attacks and many sleepless nights! The decision to go for it in the end was made after my family said I needed to go and stand up for myself and say that the decision is WRONG! I needed to put the record straight on what had been said about me. 

The tribunal was held in the local court, which is quite intimidating, especially as I had never had reason to go there before. Personally, I associate 'going to court' primarily with wrong-doing, though I do know that is not the only use.   

I was sat with my mother on the lower levels facing the higher bench, where the presiding judge, the DWP representative and the medical professional sat. At the risk of sounding dramatic, it felt like a trial. 

What followed was a barrage of questions about me and my disability- how it affected me on a daily basis. Some of them were ridiculous e.g Q: in a week how many days would you say are bad days? - A: um I'm not sure! (surely that is subjective would depend on a variety of factors such as activity levels!) Q:Could I walk the length of a football pitch without stopping? - A: no, not without breaks. Q: How many breaks would you need? - A: I don't know! It would depend on how much I walked before hand, the terrain, the gradient, the walking surface, time of day, whether I'd woken up in pain! Q: yes but how many? ... I found the DWP rep very intimidating in her questioning technique, where she continued to ask the same question over again, wanting more detail than I could give her. She wanted her questions answered with very specific scenarios in mind that weren't realistic to my life. Q: Can you cook a meal just for yourself? A: Yes if I sit down to prep and don't have to walk far with heavy items. Q:Could you do it if it was cooked in a microwave? A:Yes, but I live with my family and therefore it's not just for myself and I don't want to eat just microwaveable meals (so what is your point in asking in relation to an unrealistic scenario?) Q: yes, but could you do it?... 

Though I'm not the most confident person, I would say I'm not easily ruffled. But, when I walked out of that court room and got outside the building, to my embarrassment, I burst in to tears. Overcome with emotion (and partly due to being pregnant) I was physically sick twice into the bushes. To say I felt a fool is no exaggeration! 

In all honesty, that was the most intimidating and awful experience of my life. I am so glad that I had my mother there to support me and also to speak up on my behalf, because without that I would have been more of a mess. I'm also glad I took the day off to go as there was no way I would have gone back to work in that state. I have to say that,  in fairness,  the Judge  was kind and I thought he was very fair, even helping me interpret some of the questions asked. He also gave me an opportunity to raise any other points at the end, so I highlighted inaccuracies and lies and also directed him to my most useful evidence. 

So, after going through all of that, I did get some good news. The tribunal overturned the decision and awarded me some PIP- not enough to get my Motability car back, but I went from having 4 points to 16! Finally some recognition and justification! And I can reapply for my blue badge now! 

What infuriates me though is that before PIP came in I had indefinite DLA for my condition (which unfortunately isn't going to get better but will slowly degenerate with age.) But I was still put through this ordeal. Not only that, it's not over. The DWP can still appeal this decision and go back to tribunal again, wasting more taxpayer money! And, even after that I will have to go through the claim process again when my current claim period ends in 2019 because they no longer do indefinite or longer period claims! 

From Manchester

  I have multiple disabilities and am constantly fighting to try and get what little support there is, but am met with multiply barriers due to services not having enough funding or adequate staff. I have severe and enduring mental illnesses and when assessed by psychology for therapy am told I need long term, non goal based therapy, but I was also told they do not have the funding to provide that sort of therapy and only provide shorter term goal based therapy, so I am sent away.  This not my first time with therapy not working out due to limited resources and funding. 

I am in the process of trying to get direct payments to have long term care hours, but all that has happened is countless barriers have been put in place, to slow my process down or to mean my social worker doesn't apply for direct payments. Lack of funding for services has been mentioned to me several times. It also seems that because I have physical, mental and neurodevelopmental disabilities that different teams are trying to push me on to other teams as they have inadequate funding and/or resources or staff. 

My mental health trust cut 7 of its services the other year and I am in a big city.

I have had a psychiatrist tell me that they have to rotate patients with the CMHT due to having no money. 

I am desperate for more help and support in various aspects of my life but the services that should be there for me have either been cut or they have such little funding, staff, and resources. So I cannot get this much needed help and am having to constantly fight to get anything at all, which in turn affects my already unstable mental health.

Services are constantly being cut and under funded and under staffed. I've been told in A&E  'we would section you but we have no beds to send you anywhere' so I was sent home and ended up taking a serious attempt on my life which brought me back to the same A&E. 

I've been sent to a psychiatric hospital hundreds of miles away from where I live. Mental health care, treatment, services, beds are just being cut and it is seriously affecting me. 

Although in the end my PIP result was positive the process to get there was extremely distresssing. The assessor spent a lot of the assessment laughing at my tics (I have Tourette's) I was also quizzed on why I wasn't taking medication for my Tourette's and the assessor started telling me I should (I explained as best I could why I wasn't) the assessor became quite insistent that I should be on medication even after I had told her they did nothing and had horrendous side effects. I didn't understand why it was her place to tell me what medication to be on and her insistent on continually telling me I should be distressed me more on top of already being distressed before the assessment. I was asked why I hadn't killed myself, I informed her that I had attempted suicide multiple times and I was asked for specific details of how and I was also asked for specific details about my self harming. 

The whole process and the way it was conducted was extremely distressing. Getting a brown envelope in my post gives me a panic attack and I become an anxious wreck. 

Stress every couple of years over whether some ill-qualified person is going to pronounce me magically cured of my progressive, chronic, degenerative disability. 

The money from disability benefits has meant I can reduce my working hours (a blessing for someone with a painful physical condition which causes extreme fatigue) and means I don't need to work "on call" hours (out of hours service).

The uncertainty from the Tories "support" means stress- which triggers flare ups and every 2 years I have to go through the ordeal again and have my security taken away for months on end meaning I have to pick up extra hours and extra shifts which makes me even more ill.