Forum

beaurocracy and mobility!

Hi everyone,

i’m new to the site and the world of MS but get the feeling this is the start of a long and loving relationship!

my husband was diagnosed with ppms last July. we’re still waiting for the follow-up appointment with neuro…or even an ms nurse to speak to…or an assessment from soc. services…or a reply from the nice man who’s supposed to be looking into why we were turned down for a disabled parking bay near the house when my husband clearly can’t walk unaided and is in constant pain…what’s with all this lack of efficiency everywhere??? feels like we’re waiting for everything all the time.

Our one success: a blue badge…yippee!

No drugs, no advice, no help, no support…PLENTY of apologies!

anyone else wait more than 3 months for follow-up neuro appointment???

i was about to apologise for ranting and raging but i think actually, it makes us all feel a bit better so i won’t apologise!

Does anyone successfully claim DLA/mobility allowance and if so, what’s the magic wand to get it? We applied for DLA but were turned down for reasons unclear. we’ve had to take out a loan to buy a car we can’t afford so my husband can drive to work (new car is an automatic…he burnt the clutch out on the old one as he couldn’t control his left leg and the car had to be scrapped).

i have so little time for all this beaurocracy…full time job, four kids, a puppy (very cute but hard work!) and a husband with very unpredictable disability.

anyone else managing to juggle everything? any tips???

rant over, thank you for reading!

Hiya, my hubby too has ppms we found out last Oct that he had ms then in january it was ppms. His next app with his neuro is feb 2012… But we have seen his ms nurse 3 times now. The ms nurses are fab, any questions or problems they will help you out.

My hubby does get DLA (high rate mobility middle rate care) but we had to appeal to get it… now we are appealing ESA as they scored him 0 points!!! Unfortunatly it seems you have to fight for every bit of money that you are entilted too.

I know it’s very stressfull, i too have 2 kids a puppy and a hubby with ppms so know how you feel :slight_smile:

Sally xx

thank you for those replies and good advice. When we filled out the dla form, we did actually put 0 kilometers for the distance he is able to walk without pain as that was and is the truth. we were still truned down for both that and the disabled parking bay…the parking is terrible where we are. Anyway, we will continue to appeal and hope we get somewhere. It’s just so frustrating and slow…or maybe I’m just too impatient!! Not even an ms nurse where we are as she has been on long term sick leave since dx.

thanks for your support though, much appreciated xxx

You should appeal. Something like 75% of decisions taken are overturned on appeal.

Liz

Hiya, definatly appeal. We had to get the desision looked at again when we 1st applied as he was only awarded low rate care and no mobility. It is a long slow drawn out process though. I’m sure you can just phone someone from the ms society if you want a chat seen as though you have no access to a ms nurse.

Sally xxxx

DLA and ESA forms are nowhere as straightforward as they appear. Answering the questions honestly is simply not enough. You need to know how the people reading them are REALLY assessing the answers. You also need to give loads of examples and detail and supply supporting letters from at least one medical professional and the letter shouldn’t just say “I support this” - it needs to describe the symptoms, the implications, etc, so what you’ve said is confirmed by a professional with no reason to exaggerate or lie.

The best way to do a good job of the form is to get help from a charity, the CAB or someone else who does it often (and is successful). The alternative is to join the benefitsandwork website. It costs about £20 a year and you get access to all the (very helpful!) inside info.

I guess a lot of this is too late this time, but you will still need help with the appeals form and with future applications. Please do appeal. Most people who appeal (and have help with it) go on to win.

Re the neuro appointment, the sad fact seems to be that people with progressive MS get a raw deal as far as appointment time with neuros. To be honest, an MS nurse is usually more useful anyway! A friend of mine got a referral to her MS nurse via her GP so if you are waiting to see the neuro to get the nurse’s contact info, it might be quicker to get your GP to find out who he/she is and get an appointment for you.

3 months does sound an awfully long time with not even an appointment date for the neuro though. Have you phoned the neuro’s secretary? If he/she isn’t being helpful, you should get your GP on the case.

If it’s any help, it does get easier with practice!

Karen x

Unfortunately the length of time between my first and my follow-up appntmnt was 5 months! Despite repeated 'phone calls to the Neuro’s secretary too! I am now waiting for an appntmnt for the MS specialist to confirm my dx. Lord knows how long I’ll have to wait for that! I too have four children - whom I’m finding hard to look after with all the problems this condition has brought me. I hope your husband gets some meds soon to help alleviate his pain. Tree65 xx

We applied for DLA just after my wife was diagnosed, her MS nurse helped with the form and she said that we should fill out the sections detail how far one can walk and how much personal care is required etc. as if the applicant is having one of their really “bad” days. We were approved straightaway and didn’t need to appeal. Hope this helps.

J

Hi Ardberg,

Bit late to the discussion here, but yes, I waited four months for a follow-up appointment. I was diagnosed in October 2010, and was supposed to have an “assessment” in November, prior to any decision re treatment.

That “assessment” was cancelled on the morning I was supposed to have it, because the neuro who does them had gone sick. She was off work for another three months, and in all that time, they didn’t have anybody else capable of doing an assessment, apparently, so I eventually had one in February - four months after being diagnosed.

I then had to wait another two months for an appointment regarding what we were actually going to do in the light of the “assessment”.

So six months, just to get to the decision about treatment. Luckily for me, I didn’t want treatment anyway, so wasn’t too heartbroken by the delay - but did find it very stressful having the issue left undecided for so long.

Having been diagnosed, I thought it would be a simple matter to agree a course of action. I couldn’t believe I waited six months, just to have the conversation.

I can’t help with the DLA. Having read the form, and the guidance, I believed I was almost certain to be turned down, so didn’t put myself through the stress of applying. When - as I expect will happen - I reach the point that success is more likely, I’ll give it a go.

Tina

Sorry, I meant Ardbeg - seem to have decided you were Swedish, for some reason.