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The MS Society rocks!

Thank you, thank you, thank you to jak10 for suggesting I contact a local branch for help with my ESA Mandatory Reconsideration.

Today I got to talk to an absolutely lovely lady who’s the secretary of the Sleaford and Grantham branch and she was a huge help, and so nice to talk to. She’s given me a direct number for someone at the Sleaford CAB who specialises in helping people with MS with their ESA/PIP problems(result!). That’s awesome in itself because there’s no direct contact numbers available for our CAB.

After explaining my fears of how neither my neurologist or MS nurse will have much of anything recorded about my actual symptoms, so I was stressing about how I could get medical evidence to back up the letter for the MR, she said I needed to go to the doctor and ask to be referred to the Outreach team at Grantham hospital, who are physiotherapists that specialise in MS, to see a cognitive specialist, and they will test me both mentally and physically. She’s given me a direct number for them too, my mum’s now trying to get me to call them and see if I can get in to see them without having to be referred. This lady thinks I do need to be referred, but to have a try, and ask to speak to Melanie as she’s lovely, lol. I’ve booked the next available doc’s appointment anyway (Monday afternoon).

She’s also taken my address and given it to the lady that sends out their newsletter, and told me where and when the local group meets up.

She’s said I need to write to my local MP! and tell him that I’m suffering from a chronic neurological disease that’s only going to get worse, that I have “severe cognitive impairment” (and other other excellent phrases to describe my problems, but because of my mental issues they were gone out of my head immediately, so maybe I need to learn to stop calling them things like mental issues, and say severe cognitive impairments instead?) and have been refused benefits. I don’t know if I can class my impairment as severe, but then that kind of thinking is why people end up getting denied benefits, isn’t it. You don’t word things strongly enough and what you tell assessors is translated as you being able to work. She told me to never say things like “sometimes” on forms.

So PHEW! Basically! I come back on here after months and am full of woe, but now I feel SO much more positive. I know it’s not going to be an easy journey getting through this, but having some solid support and help behind me makes such a big difference!

I’m even feeling calmer about the fact that I’ve had to claim JSA, which seems pretty nuts considering my assortment of problems. Got to go to the Job Centre on Thursday to see an advisor, I’ve seen her before though, early last year, and she’s really nice. So yes, calmer, right now at least…we’ll see how I feel Thursday morning!

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I’m glad you were able to get some help and yes local branches can be very helpful for information and support. It’s worth giving them a try.xxx

I’m so glad you are getting help with your ESA. You’re right, the MSS rocks!

And I think it’s probably correct to describe your mental problems as severe cognitive impairment, I’ve got an appointment in 2 weeks to see a neuro-psychologist and I think s/he will describe mine as ‘mild’. I have trouble with memory, sometimes with complex cognitive problems and with paying attention, especially when distracted by something else, but your description of what you experienced at your ESA assessment sounds quite a bit more challenging than mine. So if there’s a choice between ‘mild’ and ‘severe’, but nothing in between, then she’d be right to call it severe.

Sue

I hope your neuro-psychologist is as good as the lady that I saw 2 years ago, she clearly was very expert in her field, and she was so very nice and made me feel really at ease.

Do you have to travel for your appointment? I was pleasantly shocked to find out that this lady came to me, not the other way around.

I need to be brave now and ring the Outreach number that the MSS lady gave me and see if I can bypass the referral procedure!

Oh wait! I have another reply from the MSS lady, she’s asked the Outreach people herself if I can self refer and I CAN!

Oh that’s a big help…self referring is much better than having an appointment date plop through your letter box, with an unsuitable day and time.

I hate having to change appointments, as they can be much later on.

Pollx

Gud 4 u, you sound so much more upbeat & possitive! thingz like this can rearly grind ya down!! itz amazing what a little bit of help & kind wordz can do for our mental state of mind

stay safe, juju

I’ve been told that the appointment will last for between 2 and 3 hours so it sounds like it will be as in depth as yours. I do have to travel for the appointment, but I’m just glad that although it’s a 45 minute drive to the hospital, it’s not the Brighton hospital, which I was expecting. It can take well over an hour to drive to Brighton and the parking is a nightmare.

Do you have somewhere planned to rest before you come home? If you get the barrage of mental tests that I did you’re gonna need some downtime afterwards. Another thing the lovely lady that I saw made sure to say to me. Have a rest now, she said once we were done, this kind of thing tires you out.

Back then I didn’t understand what she meant, fatigue really wasn’t much of a problem at that point…those were the days!

I shall probably fall asleep in the car. My lovely husband will be driving. So far, we’ve had our current motability car just over two years, we had the adaptations done so I could drive it (I had the adaptations on my last car that I drove all the time). Thus far I haven’t driven it once! I’m very lucky in my OH.

Oh good, it didn’t occur to me that someone else would be driving. Sadly that happens to me a lot now, I’ve lost a lot of that ability to pause and think about something and come to a sensible conclusion, my brain just jumps to an immediate - and generally wrong - assumption.

Don’t worry, the same thing might well have happened to me. It hadn’t occurred to me that some people drive themselves to appointments!

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Progress report from me, lol.

This morning I called the mobile number that I’d been given for the Outreach physio lady, and she’s coming to see me the Monday after next.

Then I went over to the Job Centre with my mum to work as my brain’s external hard drive. I was seriously dreading this, having to go back on JSA with my cognitive issues is ludicrous, but it was amazing to be honest. The lady that saw me had accidentally double booked the lady I was meant to see, so she gave up her lunch break to deal with me herself. Wasn’t that nice? I know her, we both worked at the local chicken factory years ago, and she’s been at the Job Centre for a while so I dealt with her when I was looking for work before.

But oh boy is it different now! She’s all about making sure that I get my JSA, and not trying to get me to apply for every job going for 35 hours a week, or any of the other horrible stuff that I was expecting. I have to job search for just 10 hours a week, she’s put that I’m unable to take on any physical activity, am unable to work in extreme temperatures or have to stand for any period of time. That I can only work 2 hours per day within an earliest start time of noon and latest end time of 5pm. Furthest to travel from my home would be 20 minutes so limited to this town, and I’m unable to use public transport independently. She’s put that the kind of job that I’ll be looking for is face to face customer service because I told her I don’t do well on phones.

She told me that I can volunteer, and, and I didn’t know about this, I could have someone assisting me. I really like that!! Do other Job Centres do this? It’s a great thing to do, I hope they do.

At first she said I’d need to go tomorrow too as my signing on group will be on Fridays, then she said no, don’t want to tire you out, come in next Friday.

She said what I’ll be doing is similar to what people in the WRAG have to do, working on a CV was an example (can’t remember others).

After the form filling she sent me through to the council offices next door to tell them that I’m back on JSA, rather than waiting for them getting letters, to make sure there’s no gap in my housing benefit.

She couldn’t have been more helpful, I’m even feeling faintly positive now! So tomorrow I need to get myself registered on this Universal Jobmatch thing…

MS Society Northern Ireland and our Mid-Ulster branch are brilliant…