Thanks for your question. We’re confident that one of our forum members will offer their support and advice.
If not, someone from the Parkinson’s UK moderation team will respond to you as soon as possible. If the situation is urgent, please feel free to get in touch with our helpline service on 0808 800 0303 to speak to one of our Parkinson’s UK advisers.
When I was diagnosed with PD I already had Rheumatoid arthritis and was getting DAL I only told them about my P D when I had another booklet through to fill in. As you say you are supposed to tell them of any changes but the more info you give them the more they mix everything up.
Take Care Babs x
Thankyou. I shall be ringing that number on Monday. Taking a weekend off aftre several nights of fighting the cramp and scaitica monsters!
I just thought I’d check in with you on this. Did you give our helpline a call? They are very knowledgeable on PIP assessments so they’ll give you the appropriate advice on this which will hopefully give you some reassurance. They can also arrange for a Parkinson’s nurse to contact you regarding your records - do update me on this. I’m happy to provide you with more help and support.
Take care and I look forward to your response.
Thanks for the post. I have not yet rung the number, but it is top of my list for tomorrow (Tuesday). I’ll report back on every step I take, and what the outcome is. Feeling a touch more positive right now ~ but that’s typical, I get huge swings in mood.
I live in Spain.
I paid into the UK system for 26 years.
Parkinson’s is going to stop me from working at some point. I am a PE teacher.
I still have nine years to go before I can retire.
Any ideas anyone?
Sorry Hubby I have no idea with you living in Spain.
There has got to be someone you can ask for advice.
No problem at all and do let me know if there’s anything I can do to help.
Are you part of the Parkinsons team here, Reah?
I am just about to ring the number, Now…
Yes, I am the Community Manager for the forum. However, you’ll be contacting our helpline and will be speaking to one of our advisers.
All the best,
Thankyou Reah, for your help and support. I have rung the helpline, and am now waiting on a return call from soemone who is a Benefits specialist. I think the really unpleasant character of the PIP Claim form is its intrusiveness, and the overall hostile feel of every question. I cannot write by hand so have to involve someone else, probably my daughter/carer. I am finding that an unpleasant prospect, because I have not really told her the half of what Parkinsons has done to me. Bladder/bowel issues, for example. And I have never hinted even, that I have had some really down days where I have found myslef looking down at packet containing 56 Morphine 50mg pills and thinking “Why bother going on…” Thankfully a brilliant Counsellor dragged me out of that pit, but things like these forms take me back to the brink. But before anyone gets the wrong idea, let me finish by saying I am in no way contemplating such dangerous thoughts now.
Thanks for the update and I’m glad they have arranged for a benefits specialist to contact you.
Unfortunately, you are not alone with your views on PIP claims which is why we are actively campaigning to make PIP and employment and support allowance work for people with Parkinson’s. Regarding your concerns about your PIP form, if you’re uncomfortable with having your daughter do this on your behalf, it might be worth raising this with your Parkinson’s nurse.
I’m also happy to hear that you are in a better mental space and just know you can always come to us if you need someone to talk to.
All the best and do take care,
Can you get in touch with pd support worker will help fill in paper work
Hope you got your PIP sorted.
It is no easy task. I got help from the Citizens Advice as I too was unable to fill in the form or book as I should say as so many pages.
I hope you are feeling better about things.
Take Care Babs
Does anybody know if I can claim PIP from Spain?
Some of the conditions to qualify for PIP are having been present in Great Britain (or Northern Ireland if you live there) for 2 out of the last 3 years before claiming and you must normally live in the United Kingdom, the Channel Islands, the Republic of Ireland or the Isle of Man. You can find out more about PIP here. You can also read about other benefits here, although you will usually find that being resident in the UK is a requirement.
You can always give our helpline a call on 0808 800 0303 from the UK or contact them by email on [email protected] from anywhere to explore your options.
Mara - Moderation Team
Sounds a Bit unfair as I paid NI for 26 years.
I know you don’t make the rules
Two days ago I received a phone call from Steven Richardson, who is a Benefits Adviser for Parkinsons UK. Very helpful, and patient! Set my mind at ease and is seeking for a local helper to come and assist with filling the forms in. Meanwhile I have been in touch with my last Parkinsons Nurse, and she is collating all relevant documentation and sending me copies. I am going to try and chase up my medical records, which my new GP has still not received despite my move being back in February. Maybe even try and get my last GP to write some kind of letter.
I’m going to document each step and every outcome, as I think it might be useful for anyone else who finds themselves in this particular predicament.
Rule 1: Keep all documents and reports you receive! No matter how small or insignifaicant they seem.
I’m really happy that Steven was able to put your mind at ease and was able to arrange for a local helper to you fill out your form. I will pass your positive feedback onto our Benefit and Employment team.
Also, very good point about keeping all your documents - you may want to consider getting a expanding file to store all your documents in one place. Just a personal life hack of mine.
Would it be possible that Tommy will be back.
Keith was mugged a few days ago and also had a heart attack. He is asking for Tommy.dont know how else to contact him.