ESA coming to an end, but too ill to work

lyniced

Just...Yvette wrote: »

Hi Lyniced. I suspect that my MS has moved from RR to secondary progressive, as I have had no relapses for 2 years but have suffered a gradual worsening without any periods of recovery.

I haven't pressed my neuro on whether he feels my ms is now secondary progressive, as to be honest, I find it too awful and negative to dwell on. Any medication or treatment would be the same with RR or progressive so it is of no benefit to me to know what my neuro thinks. Hope this makes sense, ms is such a damn complex disease that is notoriously hard for others to understand!

My initial diagnosis was secondary progressive MS. I started using a stick 10 years ago and am now full time in a wheelchair (although the diagnosis changed 3 years ago to FA).

When I initially applied for ESA I was more or less in a wheelchair, but my doc had to send a letter to them, if I remember rightly.

Do you get DLA as a matter of interest?

Just...Yvette

Yes I do get dla - higher rate mobility (which goes to my car) and middle rate care, I think. Either middle or lower. My dla has been at the same rate for about 2 1/2 years - I would probably qualify for a higher rate care now but can't face applying again.

lyniced

Just...Yvette wrote: »

Yes I do get dla - higher rate mobility (which goes to my car) and middle rate care, I think. Either middle or lower. My dla has been at the same rate for about 2 1/2 years - I would probably qualify for a higher rate care now but can't face applying again.

Just wondering if you got higher rate for both might help with the ESA application. I get higher for both. Just a thought, because when I applied for ESA I had to inform them of my DLA.

Also, are you walking unaided or with sticks?

Just...Yvette

I'm pretty sure DLA and ESA are totally separate and have no bearing on each other decision-wise.

I walk very little now as it's so uncomfortable and I often trip as my right leg drags, but if I do walk I use a stick. I am looking in to getting a mobility scooter.

lyniced

Just...Yvette wrote: »

I'm pretty sure DLA and ESA are totally separate and have no bearing on each other decision-wise.

I walk very little now as it's so uncomfortable and I often trip as my right leg drags, but if I do walk I use a stick. I am looking in to getting a mobility scooter.

Still can't understand why you're not in the support group, as MS is progressively degenerative.

I have Scooter btw (actually 2) and it's great. Gave up driving earlier this year too, so the scooter is my little bit of independence.

How old are you?

Just...Yvette

I'm 40 this year. I think a scooter will be fantastic for me when I can get over the psychological barrier I'm facing about making this decision. I have a car but can't drive, so I have to rely on others to ferry me about in it.

lyniced

Just...Yvette wrote: »

I'm 40 this year. I think a scooter will be fantastic for me when I can get over the psychological barrier I'm facing about making this decision. I have a car but can't drive, so I have to rely on others to ferry me about in it.

I'm 47, and been using a scooter for about a year now, although I did want a paper bag over my head when I first started using it! You'll soon get over that barrier. It has given me so much independence. You'll love it.

Anyway, back to ESA. I would seriously try to go to appeal, if you haven't already. And I know it's a pain, but try and get your DLA care comp increased. I went to appeal for mine (about 10 or so years ago) and it was granted. Worth a try.

Do you have dependants, by the way?

Just...Yvette

Yes I have three children and a husband who works, does most things for the kids, does the housework & lots of cooking and is generally fab. I'm so lucky in that respect.

You're spot on about the bag over the head thing - I hate it when I see someone I know when I am out limping with my stick, never mind on a scooter! I know this is stupid and self-defeating. I think I will only use it in nearby towns that are not my home town at first, until I adjust to it.

I do have an appeal in process, but I have been advised in writing that this will take around a year to be heard! No doubt because of all the other ill people who were wrongly bunged in the WRAG and are now in the same position.

Muttleythefrog

Just...Yvette wrote: »

Please does anyone have any thoughts? Has my doctor acted wrongly? I am beginning to think it must be me as everyone seems to be against me and suggesting I am lying or exaggerating - maybe my mobility problems are immaginary? Maybe my MS has spontaneously got better? Sorry for being facetious but I really feel so hopeless.

I'm stuck for advice. I can understand how frustrating it will be if you've effectively got to get a GP who is not really qualified or in receipt of knowledge or understanding to convey your problems relevant to ESA. In fact as they said you could be capable of some work it suggests they have limited understanding of the criteria for ESA which doesn't technically look at such... it's 'headline knowledge' of ESA. You can be in the Support Group and be capable of doing many jobs. But I just don't know the inside technical requirements at DWP regarding the triggering of a new WCA.. what reaches the threshold to do this... you're hampered by the fact the DWP itself is extremely poor at advising customers as you've already found out first hand.

It may be that you require someone to help you.. welfare rights/CAB or the like. It's hit and miss but they may be able to help make a case for Support Grp criteria now being met following deterioration of health.

ETA. You've got an appeal in process? Is this the appeal they instigated rather than you? I'm confused as to how that will play out if so.. it's a late appeal I understand but they seem to have accepted that for some reason... but the appeal is presumably against an 'old' (but current) decision of WRAG at which time you yourself may not indicate health was such that triggered support gp criteria. To be honest it all sounds like a real horrible mess... the tribunal will not consider any deterioration of health after the decision you're appealing against was made. So the question I suppose is what decision are you appealing. It may be worth getting legal support if possible if this is getting messy... although given the current workload of CAB and the like you might find another web weaved.

lyniced

Just...Yvette wrote: »

Yes I have three children and a husband who works, does most things for the kids, does the housework & lots of cooking and is generally fab. I'm so lucky in that respect.

You're spot on about the bag over the head thing - I hate it when I see someone I know when I am out limping with my stick, never mind on a scooter! I know this is stupid and self-defeating. I think I will only use it in nearby towns that are not my home town at first, until I adjust to it.

I do have an appeal in process, but I have been advised in writing that this will take around a year to be heard! No doubt because of all the other ill people who were wrongly bunged in the WRAG and are now in the same position.

I do think that you should be in the Support group. Hope all goes well. Keep looking up, things will get better, I'm sure.