My wife has just received the dreaded PIP forms to fill in and my god its so daunting. Both myself and my wife who has had Parkinsons for 20 years are so scared about putting wrong things in the answers that she will lose all her entitlement which at the moment if highest rate care and mobility on DLA with the indefinitely award. My question is is there anyone at Parkinsons UK who can go through it with us to make sure we don’t muck it right up. I don’t mean cheat the system but only get what she deserves and needs.

Any help would be most appreciated.

Hi Bez,

We do understand how daunting this can be and have provided some detailed information on PIP and how to claim it here that should be useful.
If you do need some help to fill in the form, you can also contact our free confidential helpline on 0808 800 0303 for support.
We hope this helps to reduce your worries.

Best wishes,
Moderation Team

You can also contact AgeUK. They gave me invaluable assistance and pursued an application on my behalf with a successful outcome. Gerrard.

Thank you for your reply’s now the other problem is trying to get evidence from my wifes professional health workers. As you know filling in a PIP form is a time sensitive operation but she keeps getting told they’ll do it when they can get to it. Does the DWP get in contact with my wife health workers or do i need to persevere with it and try to force it a bit ?

I cannot overemphasize the value of contacting AgeUK. They employ individuals who are experts in this field and will advise you how to complete the forms and, if necessary, complete and submit them on your behalf. They will also investigate what other benefits you may be unaware of and are entitled to. Start by accumulating any medical correspondence you have relating to your wifes condition and enclose it with your application. Do you have access to a PD Nurse who can support your case? Have you received in the past any correspondence from a Neurologist. which relates to your wifes PD.?

Thank you Gerrard for your help.
I have been in contact with AgeUk and they tried to get me to get hold of DWP form filling in service which by all accounts are a basic filling in service which will only put the basic information and not actual information about problems that people with Parkinsons have and also gave me a number for CAB which i know work very hard but are not clued up on problems with Parkinsons. But anyway my wifes local Parkinsons support worker has agreed to help over the phone which has set my wifes mind at rest and will get it done sooner rather than later then all we need to do is wait for the letters from the health professionals to come through the post.
Thank you again for helping

I am truly sorry you didn’t get a better response from AgeUK, particularly after I have given them such a BuildUp. It clearly depends upon where you live and the facilities provided by the local branch. I live in Cumbria and received wonderful support and attention. I was advised to contact them by another agency and did so not believing I was entitled to any benefits. Apart from having PD myself, I am Carer for my wife Gill who has had MS for nearly 30 years. Gill receives full benefits so I assumed I would not be entitled also. A young lady from AgeUK visited us at home, spent much of the afternoon discussing our circumstances and persuaded me that I was entitled to Attendance Allowance. She completed an application on my behalf and submitted it with some supporting correspondence I had received from my Neurologist. I wasn’t optimistic but was subsequently surprised and delighted to be granted the full attendance benefit. So, since then I have been shouting praises on behalf of AgeUK…Bez, I wish you and your wife a successful outcome to your application and many years thereafter to enjoy the benefits.

You can contact your local Parkinson’s support worker and they will come to your house and help fill it in.

I found a site called ‘benefits and work’ very helpful; Google it. Gives very detailed advice. OH went from DLA to PIP on first application after I used this site and with no appeals needed. Obviously you need to be honest but after almost 16 years of Parkinsons that was easy.

The first form is done over the phone, as far as I can remember, and then the more detailed one follows and then there is a deadline for returning that form.You include detail of your neurologist, Parkinsons nurse and |GP and they will ask for their input. The PWP also has space to add how it affects them and one of our daughters also added her thoughts,(she is a mental health social worker).

Bottom line is… you are the best person to say it how it is on a daily basis.And, say it as it is at it’s worst.

Forget Age UK, CAB and even others mentioned in previous posts. Please check out the site that I mentioned. It’s very good. When I contacted my local Parkinsons support worker, showed them the form after the full form had been filled in, they had nothing to add and only praise for the content which was all down to honesty and the help form that site.

Good luck.

I got PIP filling in help from the local CAB. the Lady there was invaluable.

Well thats the PIP form filled in and sent back with all my wifes evidence from all her health professionals included so now its a waiting game and see what comes back. We had the most invaluable help from the wifes local Parkinsons UK adviser named Jill. She was such a treasure and so patient with us so thank you so much Parkinsons UK.
I was wondering if anyone knows what is the normal time scale of getting the reply from the DWP is ??

Hi all,

Thank you for all your answers.

So just an update of this horrible journey my wife took from going from DLA to PIP. My wife received the decision yesterday and it was Enhanced rate for both Mobility and Daily living needs for the ongoing period which was an extremely big weight of her shoulders knowing she can keep her mobility car and also knowing that she will not have another review for 10 years in which time the nice lady who did the telephone assessment said by then the 10 year review will probably be abolished (HIPPEE).

A special thank you should go to my wifes local Parkinsons UK advisor Jill who helped through this journey and gave us all the help we needed. A thank you doesn’t seem enough for the help given. :smiley:

Whoever is going through the change of DLA to PIP my recommendation would be get help through Parkinsons UK.

Thank You all and please keep safe in these uncertain times.