I am vaguely uncertain about sounding like I’m preaching from my soap box or my high horse in sharing my experiences with disability or immigration on this blog. But I want to share what I am learning. I hope it can help someone else. We’ll start with a bit of my story for contex, then the relevant stuff.
When first crafting this post it was more formally written. It was crap, stilted and awkward. Now it is still awkward, just more honest.
Multiple Sclerosis is a constantly variable condition. I used to be pretty good, could work, walk to the shops, be generally independent, etc. Things deteriorate and things change, sometimes every hour. Like on a recent Wednesday. I had some great news, then my son fell and bled dramatically for the first time and so forth and so on, etc. etc. So by 16:00 my legs were rubber. Between the emotional extremes and some sleepless nights, I had no more reserves and my legs suffered for it.
A few years ago I applied and was awarded a PIP (Personal Independence Payment) award. It was minimal and was heavily influenced by a serous relapse that took away the function of my hands. My husband had to help dress me, tie my shoes, cut my food and pretty much EVERYTHING around the house that I used to do. My hands are better. My grip is good, my fine motor skills aren’t. I am still not allowed to use knives without supervision. Some days my writing is pretty good, somedays I have to concentrate to hit keys accurately, nevermind hold a pen and write.
My legs gradually became an issue but because I could walk an arbitrary distance on a good day I did not qualify for mobility support. That was ok at the start. Stress and temperature are not my friends which, again was manageable. I was recently learning to drive a manual but because of this downward slide I had to stop because the leg coordination required was unachievable some days and I’d rather not put people or myself in danger. Bonus–I can already dive an automatic. My legs have become worse over time without any input from me, quite undramatically. I’ll not share the bowl and bladder issues here. Oh, but the cognitive ones… I struggle in groups or busy places. Even reading signs in airports is hard. I see them but they don’t register.
Then I became pregnant and I felt fucking fantastic. I have fatgue, proper, clinical, can’t sleep more or drink a coffee to help fatgue. There were days where my brain didn’t work and I couldn’t make myself get up off the sofa. Pregancy cured that right up- temporarily. My legs were still dodgy though. By this point I already had canes, walking sticks, crutches, a walker and a mobility scooter for days out where I might be walking a lot. So I was well equipped for the exacerbation of my symptoms after giving birth. My fatigue levels are not as bad as they’ve been though fatigue is ever present. I do not walk and carry my son more than a few steps as a rule, though I could when he was born. I can’t walk far; walking like a drunk toddler on a great day. I can’t do yoga at all because I fall over. My legs and balance are exponentially worse than before. Sometimes they give out slowly so I start walking and end up crawling. My quiet little hope is that they might get better if I look after myself.
All of this is to help you build an idea of my situation when I was reassessed for the award. My condition is walking = no, everything else = same as before. So my assessment happens, I fill in all the new developments which was all they asked for in the form. Glory of glories, they awarded me enough mobility points to qualify for an award. But they took away my existing daily living award. I was surprised and disappointed and confused. The reassessment form asked for only what was different so I didn’t remind them of my long standing issues. I should have. Even after the in-person assessment and formally requesting a reassessment and going over every little detail the second time. I still didn’t qualify. Fucked off? Why, yes. Very much so. Now, I have my partner to assist me with this. I cannot stress enough how helpful having a person to assist me clearly and persuasively appeal this decision has been. So we told them yes, we want to escalate this.
My first bit of advice is for those of you questioning whether to appeal. It is ok to not accept the answer you know is wrong. They don’t know what you have to live with every day. Go ahead and share the worst bits. Being positive or optimistic will give them the impression you can always achieve more or that your situation is consistent. They will say your award might be taken away if it gets reviewed in an appeal and you are found to be more able than you stated, implying there may be an element of cheating by the applicant. In my experience this is horse shit. You can appeal that too. The second tip is to get help! Ask for help with the forms and appeals. Find an advocate. If you do not have a person in your life who can be assertive and help you to be so, try to branch out. Maybe a charity can help, or a local support group, or someone in your care team. Contact citizens advice, which is exactly what we were told to do when my appeal was was rejected.
After the reassessment result they offered tribunal if i still wasn’t happy. So I decided to tribunal as my case was solid and simple. I just wanted the award I was given. Then I immediately called my MS nurse for advice when filling in the form, and she told me to contact Citizens Advice. Another tip- Make sure you get a representative from somewhere like Citizens Advice that you can name on the tribunal form. Name and contact info. This person will go to tribunal with you. And DWP have to include them in any correspondence. Oh, make sure you post things on time.
The last letter we sent was the result of all the frustration and desperation of the previous months. I had finally followed my own advice and allowed my husband to write it with me. I stopped being polite. In this letter I told them of all instances something I said or wrote was ignored. This then is the fourth piece of advice. Start now and keep a diary of your challenges and changes. When did the symptom start, how severe is it, etc. Include the cognitive stuff. The silent invisible symptoms will be missed or ignored. They tried that with me. Don’t let them. I’ve said it already but an advocate is invaluable. As is input from others in your life. If you can, if they will, ask for what they see or where they see you struggle. I tend to play down my difficulties so my partner has to add how hard things are on my behalf. He adds what he sees that I might ignore. It would be helpful if your advocate knows you and what you face. Ask them to be brutally honest for you because truly it sucks admitting how much you struggle, how severe your disability actually is. I hate it.
I realise not everyone will have built in support. Please try to find some, its worth it to not feel like you are in this on your own. Join an online group, a local club. Contact organisations. For me it would be the MS Society or MS Trust. There are bound to be more.
With this letter sent and my Yes, Tribunal! form sent in with a representative’s name, I had to wait. It felt longer than it was. I finally received a letter saying my case was reviewed by DWP and they would reinstate my Daily-living award. Did I still want to go to tribunal? No. I just wanted my award (I earned it… Bleh) and for them to stop pretending like they paid attention to anything I said. Capita processed my awards and made recommendations. DWP finally had to take a look at what Capita were claiming vs what I was. I guess it became a matter of principle. Wholesale ignoring what people write is so wrong. I also asked for the assessors report which they just glossed over and didn’t send. THIS TIP IS A GOOD ONE: one of the first things you can do when first appealing is ask for a copy of their notes. They are legally required to share it. Thanks GDPR. Don’t let them fob you off. Keep asking through the process. My request was ignored twice I think. I wasn’t going to let it slide.
Its hard to be positive or optimistic going through this process. PIP award changes have fucked up things for a lot of people. You are in good company here. Maybe we can help each other. I am not an expert nor do I have any legal experience but I will answer questions if I can. Would you be interested in a summary of what I found helpful for letter writing? I would gladly share that for both PIP and visa applications. Anything that might help.