benefits, Blue badge, Disability, Health and politics, hope, Invisible illness, Mama mifsud blog, mental health, Politics, The DWP series PIP DLA

My Fight Back Tool Kit

Thanks to a phenomenal response, I find my self in the luxurious position of being able to fightback. I have support. I have hope, I am now armed with information, ready for battle.

The pen is, after all, mightier than the sword.

Imagine if I hadn’t posted ‘crossing the line’ and just accepted all I was told, unchallenged. Imagine I didn’t have the support to dust myself off and begin fighting back. Just think for a second of all the hundreds of people receiving similar letters that can’t stand up. That can’t access information, or represent themselves in an articulate manner. That trust that a government agency is giving them correct information, and must not be challenged.

This post is for all of them.

It has been overwhelming, the volume of support and information that I have gathered in the last 48 hours. Literally hundreds of messages have come through, signposting services and desprepancies in my account, that shouldn’t be happening. I still face a huge battle, but have put together a fight back tool kit for those in my position, highlighting services available and the correct information.

The forms are very cleverly laid out to make it really hard to get enough ‘points’ to allow you to access the support you need. For example all the mental health questions, are mixed in with the mobility, so I lose points on mobility because I can think clearly, navigate and move independently, from a mental health perspective. This goes the other way though, that people requiring mental health support will not get the points from the mobility questions, and may also not get the help they need.

It’s very well organised to make you as inhuman as possible, you become simply a series of tick boxes. I am now just a number.

So, here is my guide, so far, on how you fight back.

Firstly, ask for a mandatory reconsideration of the award. Do it fast, and find an advocate to help you. Even I, being well educated and experienced in legal jargon, struggle to get the perspective to write clearly what is needed.

Help can found with this here:

I found my advocate via my own ‘Stills disease’ support group, so look for online support networks specific to your health and disability, as there will inevitably be others in the same boat, going through the same processes, who also understand your specific needs.

In this report, focus on the specifics that you ‘failed’ on and not your positive or best bits. This was my error, even mentioning the couple of days a week that I can just About get out with my car, and walking stick. This was taken as the majority. They will only seen the ‘I can’ if you put both things in, so simply leave the ‘I can’ out, if your majority is very different. My desire to be positive, and look for the good I still have, really backfired. Any advice you get from advocates will say the same, be honest, but clear that you only need to indicate the impact on your health the majority of the time.

Allow yourself to be vulnerable even if it’s not your normal modus operandi.

Next get in touch with your doctor, specialist, OT, Physio and get them to write SPECIFICALLY about (in my case) mobility, with supporting evidence of this. The forms are cleverly laid out as a series of tick boxes and only allow a general overview from your health care team. You need to get specific, and you need to make sure they understand how important it is that this is done swiftly. Share your details so they can send this direct to the DWP. You have 28 days from the date on your letter to get this initial report and letter in.

Next get equipped with the correct information from the website, and be ready to make a series of phone calls, armed with facts and your personal details.

I found out, that although the letter with my blue badge said I would have to return it, that was not true. If you get 8 points in the mobility section, or can get evidence from your doctor of a mobility need, you can still apply to have a blue badge via other routes. DO NOT JUST SEND IT BACK.

Details of this are here:

Next call all agencies to check that they are not reducing your income. Provided you are still receiving some element of PIP, your general benefit top ups should remain unaffected. Make sure you keep a pen to hand and take down the time, date, and name of the person you speak to, in case you need to evidence this at a later date. Also insist upon getting written confirmation of your discussion. I received, as you know, a false statement telling me that I was due to lose even more money.


The phone numbers you need are as follows:

ESA: 0843 515 9427

Tax Credits: 0345 300 3900

Carers: 0345 608 4321

PIP: 0800 917 2222

The final part of this is Motability. For those of you that don’t know what that is, it’s a charity that allows disabled people to use some of their DLA or PIP to hire a car for set periods, usually 3 years at a time. Included in that package is insurance, tax and all maintenance, including mot, tyres brakes etc. It’s worth significantly more than the money it costs, in most cases £58 a week. You MUST be awarded the higher or enhanced rate to qualify. Without it, like me , you lose your car, within 21 days of your award changing.

Or do you?

Motability, were actually the top of my list, due to the nature of my issues. Losing the car is the most profound thing for me, as it leaves me incredibly isolated and vulnerable, and will force me to do more physically, making me sicker, therefore costing the NHS more in specialist time, medication, hospital stays and treatment. My conditions are managed so carefully, that any change is catastrophic.

When I initially called, the advisor I spoke to was furious that the DWP were sending people inaccurate information.  She said something along the lines of ‘ they have no right to speak on our behalf, our assessment of when the car comes back, will be carried out by Us , on a case by case basis, it has  nothing to do with the DWP’. 

Due to the high number of calls they are receiving specifically on this, they have set up a dedicated department to deal with the end of contract nightmare. People are highly distressed and vulnerable and they genuinely seem to care about that, so call them, now.

Motability: 0300 456 4566

In my case so far, I can tell you that they have extended the timescale a further 3 weeks minimum, giving me 6 weeks to get the result of my initial mandatory reconsideration back from DWP. They have reassured me that I will get a specialist from the end of contract department to look at my case to see if it’s possible to extend my contract further without the high rate PIP, while I’m waiting for a full appeal. If they can’t do that, then there is a grant of up to £2000 that can be applied for, towards  the cost of getting a replacement vehicle. The only issue with this is that our income just dropped, (even though it’s a small amount) suddenly finding the funds to cover insurance, tax and maintenance is unrealistic for me, and most likely most people.

The final, and in my opinion, most important thing is this:

Share your story.

Don’t be ashamed; I was terrified when I posted ‘crossing the line’ but all I have received in return is invaluable support and information. There is power in using your voice, and for too long I forgot that. Don’t be afraid, there are many people rooting for you.

I, and many more like me, have got your back…..

2 thoughts on “My Fight Back Tool Kit”

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