UK: Blue badge blues

[Kitty]

Has anyone else had one of these and know what they will be asking?

It's usually questions about what your mobility is like: whether or not you can stand, how far you can walk, etc. The thing with ME is to stress the consequences of standing and walking, as well as the distance you can actually cover.

For instance, some patients might be able to walk half a mile, but then have to spend two days horizontal to recover from it. That means they should be assessed as unable to walk half a mile, because it leaves them in pain, unable to do essential daily living activities such as preparing food, and possibly needing assistance from another person—none of which would have happened had they not been required to walk half a mile.

The other thing to talk about is better and worse days (I never say bad days, as people often draw the inference that you also have good ones). Fluctuating conditions are really hard for people to understand, especially if you look well and are able to move as if nothing's wrong with you on your best days. They never see you afterwards, when you feel like death dug up.

Basically, tweak the above to fit your circumstances, but make sure it is an accurate reflection.

 

[Kitty]

PS: If you're able to do some work, @Shadrach Loom, make sure you stress the impact of having to do unnecessary walking on your capacity to work. Ditto if you have caring responsibilities.

 

[Saz94]

Am looking to apply for a blue badge. What have other PWME experiences been with trying to get this?

I’m not currently on any benefits. I don’t have a wheelchair or any other kind of walking aid.

(Haven’t got a wheelchair because I wouldn’t be able to wheel myself, my parents can’t push me as they have bad backs, and an electric wheelchair seems too expensive given I rarely leave the house anyway. I’ve considered getting a stick but decided that would just be more tiring having to carry extra weight.)

 

[Saz94]

@Amw66 were you able to get it for your daughter in the end?

 

[Shadrach Loom]

Am looking to apply for a blue badge. What have other PWME experiences been with trying to get this?

I’m not currently on any benefits. I don’t have a wheelchair or any other kind of walking aid.

(Haven’t got a wheelchair because I wouldn’t be able to wheel myself, my parents can’t push me as they have bad backs, and an electric wheelchair seems too expensive given I rarely leave the house anyway. I’ve considered getting a stick but decided that would just be more tiring having to carry extra weight.)

I got mine based on a telephone interview. The chap was much less friendly than the Atos PIP lady I was speaking with concurrently (she was so nice, and so keen to discuss how and where occupational therapy might help, that I suspected her of some devious psychological trickery, but once her report came through it was clear that she had been asking some deft leading questions which entitled me to the enhanced mobility rate), and some of his lines of enquiry did feel like “gotchas”.

I think that what swung it for me was denying use of buses and trains (not used at all since becoming ill), not having a Freedom Pass, and the ludicrously short distances I am able to walk without using a wheelchair. At the end he asked me what my hobbies were, and my baffled amusement at the idea of doing anything out of the house other than hospital appointments seemed to irk him, as if his last card had been trumped. Perhaps he was hoping I’d own up to gardening or hopscotch.

He did take details of all my mobility aids, though, and I’m pretty sure they were relevant. You might say, if you feel able to, that although you rarely leave the house you always require an attendant wheelchair in hospitals, and you make use of shopmobility scooters on the ultra-rare occasions you are able to visit malls?

 

[Saz94]

I got mine based on a telephone interview. The chap was much less friendly than the Atos PIP lady I was speaking with concurrently (she was so nice, and so keen to discuss how and where occupational therapy might help, that I suspected her of some devious psychological trickery, but once her report came through it was clear that she had been asking some deft leading questions which entitled me to the enhanced mobility rate), and some of his lines of enquiry did feel like “gotchas”.

I think that what swung it for me was denying use of buses and trains (not used at all since becoming ill), not having a Freedom Pass, and the ludicrously short distances I am able to walk without using a wheelchair. At the end ne asked me what my hobbies were, and my baffled amusement at the idea of doing anything out of the house other than hospital appointments seemed to irk him, as if his last card had been trumped. Perhaps he was hoping I’d own up to gardening or hopscotch.

He did take details of all my mobility aids, though, and I’m pretty sure they were relevant. You might say, if you feel able to, that although you rarely leave the house you always require an attendant wheelchair in hospitals, and you make use of shopmobility scooters on the ultra-rare occasions you are able to visit malls?

Thanks.

I don’t shop (actually I went into town in a taxi a few weeks ago to visit a shop in an emergency when my parents couldn’t go… but I had to get the taxi to drop me very close, and sit down on the floor in the shop whilst I was waiting to be served. Was first time being in a shop in over four years, and I accidentally didn’t give the taxi driver a tip, because the appearance of £1 coins has changed and I mistook them for £2 coins, but I digress…)

I haven’t actually used an attendant wheelchair in a hospital yet, typically there hasn’t been far to walk between the entrance and the lift / the room that my appointment is in.

But yeah, haven’t used a bus or a train in over four years, am not even sure what a “freedom pass” is, and the only things I ever do outside the house are medical/dental appointments or going to the home of someone who lives nearby!

 

[Kitty]

haven’t used a bus or a train in over four years, am not even sure what a “freedom pass” is, and the only things I ever do outside the house are medical/dental appointments or going to the home of someone who lives nearby!

I'd suggest making full use of that, but being cautious about saying you don't have a powerchair because it's a lot of money to pay out for someone who's housebound—an unhelpfully literal council employee may ask why you want a Blue Badge in that case.

Put the emphasis on your inability to get out over the last four years being connected to not having a powerchair or a Blue Badge. The fact you haven't used a wheelchair in the hospital setting isn't necessarily an issue; some folk with limited mobility, who already know the distance they'll have to walk is very short and there are chairs if needed, will choose to manage without their heavy, difficult-to-transport mobility aids even though they have them, because it's actually much less effort to just walk 10 metres. Same goes for getting the attention of someone who might fetch and propel a transit chair for you.

 

[Amw66]

@Amw66 were you able to get it for your daughter in the end?

About to try again. It was put off in case an interview was required as simply not up for that.

Ironically mobility is worse now so potentially less difficult.

 

[Saz94]

I’m doing my blue badge application, this is what I’ve put so far, do you think this is clear enough as to why I need the badge? Or do I need to go into more detail?

How far can you usually walk? 25 metres
How long does this take you? 0-1 minutes
What stops you from walking further? Fatigue, balance. Sometimes I might be able to push myself to walk a bit further, but doing so causes a flare-up of my condition (so for the rest of the day, my mobility will be worse, meaning I might not be able to get back to the car after attending my appointment, for example.)

How long can you usually stand before you need to sit down and rest? 0-1 minute
What prevents you from standing any longer? Balance, Other
If Other, please specify: Fatigue, as well as balance. Sometimes I can push myself to stand for a bit longer, but doing so causes a flare-up of my condition (so for the rest of the day, my mobility will be worse, making me potentially unable to wash myself, for example).

 

[NelliePledge]

Hi Sarah I’ve not done one of these although I am hoping to do so soon. I think not being able to get back to the car ought to be enough to qualify you for the blue badge.

I can manage quite a lot further distance as a one off so I am thinking I would need to say something about pushing to walk and stand beyond limits causing a worsening of symptoms on subsequent days, preventing me from doing basic activities.

Maybe you would want to cover the impact beyond the same day? Perhaps those with more knowledge could advise.

 

[Amw66]

I’m doing my blue badge application, this is what I’ve put so far, do you think this is clear enough as to why I need the badge? Or do I need to go into more detail?

How far can you usually walk? 25 metres
How long does this take you? 0-1 minutes
What stops you from walking further? Fatigue, balance. Sometimes I might be able to push myself to walk a bit further, but doing so causes a flare-up of my condition (so for the rest of the day, my mobility will be worse, meaning I might not be able to get back to the car after attending my appointment, for example.)

How long can you usually stand before you need to sit down and rest? 0-1 minute
What prevents you from standing any longer? Balance, Other
If Other, please specify: Fatigue, as well as balance. Sometimes I can push myself to stand for a bit longer, but doing so causes a flare-up of my condition (so for the rest of the day, my mobility will be worse, making me potentially unable to wash myself, for example).

Do you get pain / cramp/ breathlessness/tachycardia if you push yourself ? Relevant if you do .
How is a bad day - for a fluctuating condition mobility on bad days may be relevant - blue badge may be the difference between being potentially housebound and being able to do things

 

[Saz94]

Hi Sarah I’ve not done one of these although I am hoping to do so soon. I think not being able to get back to the car ought to be enough to qualify you for the blue badge.

I can manage quite a lot further distance as a one off so I am thinking I would need to say something about pushing to walk and stand beyond limits causing a worsening of symptoms on subsequent days, preventing me from doing basic activities.

Maybe you would want to cover the impact beyond the same day? Perhaps those with more knowledge could advise.

I don't personally generally have impact beyond the same day. (This is why my ME diagnosis is in doubt and I'm being assessed for other causes.) But impact on the same day ought to be quite enough for me to need a blue badge I feel!

 

[Saz94]

Do you get pain / cramp/ breathlessness/tachycardia if you push yourself ? Relevant if you do .
How is a bad day - for a fluctuating condition mobility on bad days may be relevant - blue badge may be the difference between being potentially housebound and being able to do things

The 25 metres that I put is what I can do on a bad day, I think. If I was having a REALLY bad day that was worse than that, then I wouldn't be able to get out of bed, never mind downstairs to the car, so the blue badge wouldn't be used on a really bad day anyway.