In the United Kingdom if you are deemed disabled you can apply for several benefits. One is called PIP which stands for Personal Independence Payment. Before this we had a simpler system called Disability Living Allowance. If you qualified for enhanced rate you could choose to take the money monthly OR use it to get a mobility car which is sort of hire purchase for life. The car choices were many and varied including WAV vehicles (Wheelchair Access), and many people took this option to make their lives easier and yes to get to work.
The other is a Blue Badge, which enables you to park close to shops and if you have one it is easier to get your wheelchair out of the car, because the designated spaces are wider.
All sounds good doesn’t it? How caring are our Governments to have these schemes in place.
So how does one apply for these benefits. Well you contact the Department of Work & Pensions on 0800 917 2222. You have to answer questions which takes about 20 minutes to ascertain if you even qualify for PIP. If you are then you are sent the massive and huge booklet that you have to actually fill in. Now anyone who is disabled will take one look and think your joking right no chance. Myself included having PPMS my brain is useless. I was lucky as I could ask for help from Aged UK (yes being old has its advantages). A lovely lady came and helped me fill in this huge form who I found out came from the DWP.
You can ask for help from Citizen Advice and if your really stuck a member of the DWP can again come and help you.
Now surely, if you have been diagnosed by a specialist why do you have to be put through all the stress of applying for this benefit? Would it not be easier all round if there was a score scheme. Well there is but obviously no one seems to be aware of it which was designed for MS. It’s called the EDSS Score.
Now this is useful, surely it could be adapted to include disabilities as a general rule? If someone was given a score by a specialist then the form could be massively reduced saving a few trees, and personal sanity. You could simply supply your score which would be certified by a specialist. Thus saving huge time and effort on the behalf of the person applying.
Obviously you would be asked how does your disability affect you alongside. But the scheme at the moment is you get points for mobility and care. The higher the points the more chance of getting the higher rates. Some illness are varied in their disability. One day you can feel fine, then the next day you can barely walk so it is very difficult for people to fill the forms in as on that day they may be having one of their better days.
IF you are diagnosed with a life changing illness like MS for example its progressive and there are NO CURES. Yes there are for RRMS disease modifying drugs, but these only slow down progression to a certain extent. With Primary Progressive MS, although there is a new drug which could benefit some people now, it is not guaranteed as a cure, only to reduce the progressive deterioration of the disease.
The scheme at the moment is so hard to get. Many people who were awarded a high rate say on the old scheme DLA, now do not actually match on the new scheme PIP. How can things be so wrong? This leaves many applicants in financial hardship.
Now if you don’t get high rate mobility you could lose your money and your car and a lot of people have relied on the car to get to work or even have some sort of life.
So If they did not score on the high mobility then they would lose this benefit and their car. It’s a bit rough isn’t it? It has left many applications in a severe financial and emotional mess and yes suicidal I have heard that “cry” worriedly on forums, where people are so wound up and upset about being put through this tortuous process they talk about ending it all WHAT’S THE POINT, you hear its damn well upsetting.
Why are they making it so hard? Because the first scheme DLA was so abused. (So it was thought).
AGAIN the genuine are PENALISED because of the ABUSERS to the system. Genuine people are being criminalised. Made out to feel like they are acting in a fraudulent way.
If people didn’t scam or abuse our systems we would all be stress free. It makes me so mad that the few ruin it for the many. If you are genuinely disabled with a need why the hell should we have to jump hoops? It’s hard enough being disabled without adding on top the stress of applying for a benefit which is meant to help us have a better life.
It’s like the Powers that be are doing us a huge favour. There is a sting in the tail. For example if you have worked or have savings and you are awarded the higher rate in care say for PIP they will use that if you apply for government funded care package.
Now if you haven’t worked and have no savings you get it free. Rough justice why work in the first place!
Most of us working or have worked, maybe have some savings get given PIP. I qualified for ENHANCED IN CARE.
DO I benefit?
I have worked since I was 14 only time I did not work was when I brought up my two daughters, but went back to work. I get a full pension with a little bit from my husbands.
Before I qualified I had government help for my care and was able to hire a care worker for 10 hours a week which was so useful. It enabled me to get out more, go to see my mother in Bristol, and I had help with my personal grooming and bathing.
Because of circumstances I had to sell my house which means I have savings. So now I do not qualify for this 10 hours it would mean paying out £520 a month towards my care. As I was unable to find a suitable home now I rent a small flat so including the rent for this and the care that I would have to pay my monthly outgoings before I ate would be £990 a month more then my pension.
I cannot afford to pay for 10 hours care now without seriously dipping into my savings which I want to use if I can find a house to buy, so I have reduced it drastically and now suffering the consequences as I rarely go out, (my emotional and mental health has been compromised), and I don’t have that person there that I knew I could rely on to support me on my down days. Yes I have family who can take me out BUT they are not trained to deal with someone with disability. Its not that simple, you ask someone to take you to an appointment you have to use your wheelchair, oh well thats easy enough……….. WRONG it couldn’t be further from the truth.
If your not used to dealing with someone in a wheelchair you can make that little journey out; exhausting and painful. I know I have been there. With all the best intentions and kindness experience is definitely best. My care worker was great with helping me bathe and keep clean and wash my hair.
MANY people who get PIP use it to make their lives easier. some save and buy scooters, or wheelchairs, others to go to gym or swimming etc.
I doubt many are going off on holiday with it and lying on a beach somewhere smoking fat cigars and drinking champagne.
we are penalised over and over again for being DISABLED. there are more and more people becoming disabled, and need help.
I WOULD swap in a heartbeat if I didn’t. believe me.
IF someone is diagnosed with a life changing incurable disease, then why the hell do we have to beg for money? No its not our right to have this benefit, but it is there to help us to have a better life so if the government offer it, why make it so totally impossible to achieve getting it? It’s like being tested to see how determined we are….like going on an Army assault course and the ones who get to the end are rewarded the ones who fail are chucked on the scrap heap. That’s how it feels to me.
Now people with MENTAL HEALTH can apply for the new PIP which I actually think is really good. Having said that what about our mental health? The mental health of people who apply for PIP and are left bereft because of the complexity of the system, they loose their money, their cars, their dignity and some are so distressed over all this sadly they lose the will to live. Yes you can appeal a decision by going for a Mandatory consideration……….but that in itself is stressful and can take months to achieve.
https://www.turn2us.org.uk/Benefit-guides/Challenging-a-Personal-Independence-Payment-decisi/Ask-for-Mandatory-Reconsideration
The next obstacle to making our lives easier is to apply for a Blue Badge. IF you are lucky to get awarded the enhanced rate in PIP, you have more chance of getting a blue badge but its not a GIVEN. You still have to fill in forms and some have to still have an assessment. AGAIN because the blue badge scheme is and was abused………….
The Blue Badge.
The blue badge scheme is to enable disabled people or with limited mobility an ease to park and not have to walk too far.
My husband was diagnosed with END STAGE COPD. He was sadly deteriorating and did struggle to walk far, not with his mobility but with lack of breath. He struggled to walk from the car park to the shop door so I persuaded him to apply apply for one.
The assessment nearly put him in hospital! My husband explained to the assessor at the time of the assessment that he really struggled with his breath and found it hard to walk very far. Having said that, the assessor decided to see if he was actually telling the truth (even though he had back up paperwork from his doctor) and they made him walk way above his capabilities and got a shock when he had to sit on the pavement to catch his breath. He did get his badge but was made to feel like a criminal in doing so. He was quite upset when he came home and took several days to recover. I know he said he wished he had not bothered, but he did get his badge, and it did help him before he passed away.
I think the system is cruel, and discriminatory.
and against our human rights i.e.
- the right to an adequate standard of living
- the right to the highest possible standard of physical and mental health
Maybe we should start marching to parliament in our wheelchairs and scooters?
I just dont understand how some people get PIP and others dont. WHY SOME assessment centres are brilliant and yet other people get zero points.
OK taking a slight diversion here as this is another pet hate of mine.
Regarding parking say at large supermarkets. Where I live there are more TODDLER AND MOTHER places then DISABLED. Do these people have to jump hoops, prove they have kids and a need for these spaces NO. BUT WE DO. They could simply borrow someone’s child and buggy so they can park close yes some people are that lazy. Yet genuine disabled people are put through hell and back to get the same spaces allocated them. Just different images on the parking spot.
I remember one day some moons back my care worker took me shopping to Tesco and there were no disabled parking spots, so she parked in a toddler and child space as they were virtually all EMPTY. Before we could get my wheelchair out, a guy came and told us to move! We were not allowed to park there. I mean yet people quite often feel it is ok to use the disabled parking places to quickly run in to the shop to get their fags or beer lol. Or block off the disabled spots with poor parking as they cannot park anywhere else so well lets just block the disabled off they are not important. RIGHT? Stand up all those of you that this has happened too where you have gone shopping and someone has used the spaces available and you can’t get parked and desperate for a wee? Been there done that and thank god for ladies incontinence pads is all I can say.
The solution is so easy. If your disabled you register and are given a disability score and this should be used in all applications for help. Still I suppose being simple is way to hard for any government. They have to make everything so hard to apply for. Its like they think by doing so people will give up and sadly some do.
Having a blue badge. Does it suddenly mean we are RICH and able to make a huge killing on the stock market? NO it just means that when we have to go out say for an appointment at the doctors/specialist or even to feed ourselves we can do so in comfort and less pain as we don’t have to walk so far. To be honest one of the reasons I rarely go out is not being able to find a space available, and having the person caring for me at that time struggling to get a wheelchair out and then negotiating it to the shop door, or its raining so we have further for us to get wet!
WE should never have to beg for help. Its a bit of money to make our lives more independent, isn’t that what PIP is about our INDEPENDENCE? Surely if it helps someone with a car and they can get to work or extra money to feed themselves healthier, then perhaps they will feel well enough to go back to work. Isn’t it or couldn’t it be a WIN WIN situation?
SORRY fed up of being disabled, fed up of begging for lifts, fed up of struggling everyday to even want to get up and fed up of feeling like a criminal. Also upset for my friends that I have met on the Internet who are constantly stressed over having to reapply for benefits and becoming so stressed over it all they are literally making themselves more sick.
Still I have my memories of good times before becoming disabled. The pictures below show some of my life before and after becoming sick.
the start of my journey. 2000 after this slowly it all descended into madness. 
health. Having fun with Mike on a car trail called the CLOUDS, when i was well such great fun. 
My two students I taught who won best students of the year awards. Me on right and David Drew MP and my bestie Alison and victoria 19 who had severe dyslexia but still got her RSA exam. Both amazing people. 
Me with dark hair yeh right, and my younger daughter married to go on to have 2 lovely boys, sadly the marriage didnt last but my love for her will always last. xxx she is the other side of my heart as is my elder daughter on the left of the photo. x 
Never thought i would sunbathe on Daytona Beach USA, but I did. I loved that holiday was a long time ago well not so long before I got sick but an amazing experience we both enjoyed. 
I live in a beautiful part of the country. Not long after i started to get sick out with mike when i could walk with our Lucy JR. 
enjoying our time out together we often went fishing at the weekends or just off to the canals. 
a visit to my mum she kept me sane, i loved my visits to her, sadly she passed in 2016 suddenly and I cant bear to go near the cemetery as it makes me too sad i have her always in my heart, everyday I still say good morning to her and my pops. x
BUT you know what I wouldn’t change it for the world, as all the great memories I have of my life with my husband helps me through the dark times of pain. I have done more in my lifetime then many people could dream of.
I just want the system to change to make it easier for the disabled to have better and healthier lives, not to make them feel like criminals, but make them feel supported and needed even with disabilities, we have a right to a life, and respect just like anyone else.
God decided to make us his soldiers. I am tired of being tough, but still not too tired to worry about my friends who have to face such awful challenges in their lives, and are left to feel let down. Remember no one wants to be disabled……………it can happen to anyone at anytime in a nanosecond. So come on the powers that be listen to us, make it easier for us, RESPECT us, help us, don’t criminalise us……………..please.
Please feel free to share your own experiences, good or bad.
Thank you for reading.
My Journey with MS 
Hey lovely, I left a comment a few days ago but as Akismet has been hating me lately it’s probably gone to your spam folder. I copied it just in case so I’ll paste it here..
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I’ve not applied for things like PIP or a blue badge, but I’ve certainly heard plenty of horror stories and it seems so obvious that the system is beyond flawed, it’s cruel and it’s unfair far too much of the time. I’m so sorry for the things you’ve gone through, and your husband with trying to get that blue badge; while I’m glad he was eventually granted it, I would have felt criminalised and humiliated by the whole process to. I think you’ve done absolutely brilliantly with this post , I take m hat off to you because you’ve said it so very well!
Caz xx
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Hi Caz thank you for your lovely post. shamefully my husband only was able to use his badge for a few months before he passed away. I have spoken to others who had similar issues as well and found the system flawed. No one should have to go through this humiliation. xxx
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