Hello

[richard]

Hi Lesley. Welcome to this special group, no one wants the illness we have to endure but you will get all the help and support here. Do chase your PIP, I was turned down first time, I appealed and was turned down again. My consultant said that’s ridiculous and sent a form and within two weeks I was getting my money. I say my money, I have paid taxes all my life, I feel it’s my right to receive it.

Wish you well

Richard

[Mary C]

Hi Lesley,I forgot to mention my GP issued form DS1500 which in effect meant I was terminally ill and might pass away within 6 months.Sounds grim I know but I forwarded this to where my PIP application was being processed and was awarded the highest rate.
Best wishes
Mary

[Deb]

Hi Lesley and a warm welcome to the forum from me,

I am obviously so sorry for your diagnosis but I'm glad you've found us. The forum is a good place for friendship and support from people who really understand .. well done for making your first post.

Just a word about wheelchairs. i resisted using a powerchair for ages because it felt like giving in. As others have said it does give you more independence and safety but you will know when the time is right.

A DS 1500 does fastrack you to the higher rate of PIPS, as Mary said. Your GP or MND nurse can issue one. and don't be too alarmed by the wording on it. They last three years and I've just got my second one.

It's good you have a loving family and close friends because this helps us to stay positive. I look forward to chatting with you and do ask any questions... There's usually someone on here who can answer them.

Take care,
Love Debbie x

[Shaun]

Hello Lesley and welcome
regarding PiP , I had to wait 3 months for a reply after submitting the claim firm, was only expecting to get part of it but got the full amount and it is backdated to your claim date. So that was a nice bonus
shaun

[GaryM]

Hello Lesley and welcome
regarding PiP , I had to wait 3 months for a reply after submitting the claim firm, was only expecting to get part of it but got the full amount and it is backdated to your claim date. So that was a nice bonus
shaun

Same here and Louise has just got Carer's Allowance backdated to September. Which is better than a kick in the teeth.

[SueM]

Welcome to the forum Lesley, I was also diagnosed last September, I do have a slower progression though. I applied for PIP 16 weeks ago and am still waiting.
Take care Sue x

[Mary C]

Hi Sue,I found the PIP helpline we’re brilliant.Once I said I have MND and my GP issued as DS1500 I quickly got the highest rate.If Like you I would have had to wait 16 weeks I would have missed the opportunity to get a car on motabilty scheme because I reached 66 and received state pension.This would have put me outside the criteria for the motabilty scheme.
You may not be in my age bracket but thought I would mention it and encourage to to try PIP helpline
Best wishes
Mary

[Bowler]

Hi Sue,I found the PIP helpline we’re brilliant.Once I said I have MND and my GP issued as DS1500 I quickly got the highest rate.If Like you I would have had to wait 16 weeks I would have missed the opportunity to get a car on motabilty scheme because I reached 66 and received state pension.This would have put me outside the criteria for the motabilty scheme.
You may not be in my age bracket but thought I would mention it and encourage to to try PIP helpline
Best wishes
Mary

Mary not sure being over pensionable age prohibits anyone from joining the motability scheme. Copied this off the web

If I'm over 65, can I still join the Motability Scheme?


You can apply to join the Motability Scheme if you are aged 65 and over and you receive one of these mobility allowances:

• Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP)
• Higher Rate Mobility Component of Disability Living Allowance (DLA)
• War Pensioners’ Mobility Supplement (WPMS)
• Armed Forces Independence Payment (AFIP)

You must have at least 12 months remaining on your allowance when you join the Scheme. Unfortunately, the Attendance Allowance cannot be used to lease a car through the Motability Scheme.

[Mary C]

Hi Bowler.
What I was told by PIP helpline that if was if I was 66 and in receipt of DWP pension I would have had to apply for attendance allowance and not PIP.If you are on attendance allowance it cannot be used to lease a car through motability scheme like it said on last sentence of what you posted.

I managed to apply for PIP before I got to 66 and in receipt of the DWP pension.So Happy to be eligible for motability though.I applied a couple of months before my 66 th birthday .

I can only say this was the information I was given by PIP helpline and presumably people who think they might be eligible and are over 65 will check the eligibility criteria for themselves.
Thankyou for the information
Best wishes
Mary

[Barry52]

For clarification the motability scheme is open to those over 65. The PIP scheme is the factor here because you must be under 65 to qualify and be assessed at the higher rate. As Mary said she got in just in time. Of course the system is flawed.

[Shaun]

Thanks Barry, Phil for the info on PiP and retirement age, for some reason I thought it stopped at retirement age , and replaced with AA, hadn’t really thought that far along .
shaun

[Mary C]

Thanks Barry,But I was 65 and 10 months when awarded higher rate PIP
Mary

[richard]

Thanks Barry,But I was 65 and 10 months when awarded higher rate PIP
Mary

I know I shouldn’t ask a lady this but “Had you reached retirement age then?”

Richard

[Mary C]

Hi Richard, yes was 66 last October.I planned to retire as a hospital social worker in October 2020 but MND meant I had to leave work June 2020 due to diagnosis and mobility problems.
Retirement plans abandoned and replaced by more simple pleasures each day along with trying to make our home easier to manage as symptoms change.
Having a wheelchair access vehicle on motabilty scheme helped up to plan ahead a little for when I need to be wheeled into the back.At present I can transfer onto passenger seat.
I count my blessings daily but of course have moments when I wonder how I will cope as more limitations occur.
Well for today..showered and lippy on,smile on my face, prayers said so ready to enjoy today .Best wishes
Mary

[richard]

Mary C Very similar to me, retirement looming, plans to travel more and enjoy retirement with my wife and then BOOM! Like you my wife and I have a strong faith.
I am in the process of looking for a drive up front wheelchair accessible vehicle. I have found one which hopefully I can buy. I chose not to use Motabilty as they wanted a £20,000 upfront deposit and then my PIP for five years. That totals £55,000 and I thought no way.

Again like you I am showered and ready to face the world but I haven’t put lippy on 😂

Richard