It’s 5:30 on my dads birthday, and we are getting ready to celebrate with him. He only visits my beloved Kernow a couple of times a year; Kent to Cornwall is a helluva way. We don’t get much time, just a few days here and there, so when I saw the fat brown envelope waiting for me, my heart sank. I had been awaiting its arrival on a daily basis and much to my husbands disapproval, tore into it instantly, desperate to know my fate.
I should have ignored the ruddy thing.
The words swam in front of my eyes as I scanned for the meaty bit, which rate I had been awarded for mobility. DLA or PIP as it now is called, is made up of two parts, one for daily living or care, and one for mobility. Each is dealt with separately but only one of them is crucial, as a ‘gateway’ benefit to others. Being awarded the high rate of mobility, validates your disability and its impact. It entititles you to a blue badge, access to the motability car scheme, and opens the door to top ups in other benefits, due to the increased cost associated with your illness. Medication, local travel, parking, aids, driving your kids to school, because you can’t walk them, extra water or trips to the hospital.
It’s a huge deal.
Under my ‘lifetime award’ (f**king joke) I was awarded middle rate care/ daily living and higher rate mobility, whilst still in employment. This helped me stay in work a year or two more, but ultimately, you know the rest, things just got too hard. Being given the choice between kidney failure and stopping some of my medication which would leave me much more sick and in pain, I choose life. Lost job, lost house blah blah. It’s has been some fun times, but I get to live. We have just about kept our heads above water. Minimal debt, no savings. Our bank account zeros every week, but we have survived with a little help from family and friends.
When I finally found the crucial part, I was instantly sick. Then I had my first ever proper panic attack. I couldn’t breathe, and rapidly became hysterical in my bathroom away from my kids. I had been awarded higher rate care/ daily living, but normal rate mobility. Despite The DWP outlining in the letter they were absolutely sure I was the same if not worse than the last time I was assessed (hence the £10 a week increase in the daily living componant) and still had the same mobility issues, under the new rules the Tories implemented I no longer qualify for the higher rate.
Please return your car within 21 days.
We have forwarded your new award to other agency’s and they will contact you with their own reassessment, which will take effect from the 23rd of June.
In black and white the letter stated ‘ you can stand and walk with aids 20 meters, but not between 20-50 meters’. This is the crucial change in legislation that most people didn’t even aknowledge. Previously if you can’t make it 50 meters reliably and in reasonable time, your were classed as having mobility problems. That threshold changed to 20 meters, and it has absolutely devastated the disabled community.
You can only walk 20 meters reliably and regularly, so we are going to take away your car (lifeline, independence, freedom, ability to be a mother, ability to attend the ridiculous volume of medical appointments, your method of getting to swim and try and keep your body moving, your life) and cut, at the time of writing with three of five benefit letters in, £2,800 of income. We also will not be immune from the benefit cap any more as I’m not disabled enough under the new rules, so expect that figure to be significantly more by the end of the week. These are £40 a week cuts here and there, but they all add up. Combine that with the loss of my car and the increase in taxis (they aknowledge I can’t regularly make it 50 meters after all!) we are royally screwed.
There is no shop, school, bus or doctors surgery between 20-50 meters or within 100 or 200 meters for that matter, of my house. So how I am supposed to function exactly? It is pretty ruddy ironic that they acknowledge I struggle more now than 5 years ago, yet are still going to take away so much.
I get why suicide rates have hugely increased directly as a result of austerity measures.
In that moment I felt utterly hopeless. It’s not just about a car, or money, it’s yet another massive ‘screw you’. Life isn’t quite tough enough already, is it? The battle I have with myself daily to keep strong and positive, just became like climbing Everest. This decision will leave me housebound for the majority of my life, and with limited funds the stress will increase on the whole family. I have no idea how we can begin to absorb that much of a financial hit. The isolation will increase, my identity yet again changes . I won’t be able to be involved in my children’s school life, I am going to have to give up choir and swimming, my two low impact pleasures, as I won’t be able to get to them or afford it. What little energy I have will be exhausted by simply shopping, or getting to the doctors.
I will get sicker.
I already spend half my life stuck in my bloody house, why isn’t that considered? It’s personal, but sod it…. My husband is the unsung hero in my tale. He helps me get dressed and use the bathroom, wash, cooks, cleans, does most of the childcare, and pretty much has an elderly person for a wife in return for his efforts, a lot of the time. Have you any idea what it’s like to have to get your husband to help you with toiletting? Or how awful it is to have to get your eight year old to put your socks on. To have to call your son to watch you get up the stairs in case you fall? Or to have to call your teenage daughter up to your room as you can’t open the curtains? Or to train your two year old to pass everything at floor level up to you, as you can’t bend down? How guilty you feel that you aren’t like the other mums, instead your children also help care for you?
That was life before yesterday, so tomorrow is looking pretty bloody grim.
We just crossed the line from floating along just about keeping our heads above the water, to sinking pretty damn fast. I am trying so hard to find my fight, and pull myself together, but I sit here devestated, and at an absolute loss as to what to do next. I feel worthless, lost and so very frightened about the next months and years.
This is what you did when you voted for a government that valued people like me so little.
But hey, you’ve just saved the country a few grand…….
edit: I have just been told that some of the information I have been given may be incorrect. I have Definately lost my car and higher mobility funds, but it may not be more than £30 a week total, £1500 a year. I will update when I have spoken to all agencies and have accurate data. Regardless this loss is still catastrophic for me and my family.
According to further information all PIP is a gateway benefit and the welfare cap and other cuts shouldn’t be happening in my case. Let’s hope it’s a mistake. I have also now got a lot of the tools I need to fight back and appeal. Thank you.
7 thoughts on “Crossing the line.”
I’m horrified by your story which I first read on ALW. Is there no appeal? I have no knowledge or experience that can help but my heart goes out to you. I am still utterly bemused, angry, sad about the election result and the inevitable destruction that will follow.
Yes I can and will appeal. I have a team of people that will help me, I just don’t know if I can face all the humiliation of proving my disability again, this time in a court. I will do it though….
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I’m very glad to hear you have lots of support. Any court with any sense would support you too.
Dont worry mama, you are the best mum ever, the entire thing is so stupid, and you deserve better dont worry about school life, its not very interesting anyway haha, you are a brilliant mum and you havent failed any of your children, love ya xxx
❤️❤️❤️❤️❤️❤️❤️❤️ I know you guys think I’m fab 😄😄 the four of you are my reason for never giving up. You give me the strength to keep going xxxxx
I really hope that your appeal goes in your favour x
Me too! My fightback tool kit details all I’ve done so far. I now also have two kickass letters of support from senior NHS staff.
I’ve have been overwhelmed by advice and support. To this date 4,500 people have read this blog post, and stories like mine are all too common. When I finish my fight I’m moving on trying to get the way people are assessed changed to actually match the needs of individuals, so others don’t have to go through everything I’ve been through in the last few days.
If it wasn’t for phenomenal support, I would have given up. As it is I’ve been stuck in bed the last few days, so at least I’ve had plenty of time to put my case together , and get the right people fighting for me and all the thousands of other like me.
Wish me luck!!