PIP Assessment and Parkinson’s

I’m new to the forum and am hoping for some advice regarding the number of good/days versus bad days.

My husband has suffered from Parkinson’s for a number of years and, to be honest, never has a good day anymore. The last actual good day I can remember - when he had reasonable mobility for most of the day - was four years ago, and that was the first one he had had for year before that - I can remember because it is so rare!

He is at his worst for most of every day but will get the odd period of time where his mobility is dramatically improved. These periods are unpredictable and all too brief. For example, he may find he can suddenly walk to the bathroom unaided but five minutes later will have to call me to help him back as he is barely able to move at all and would not be able to walk safely for any distance whatsoever.

The PIP questions all seem to assume that you will good days and bad days and want it described as such - maybe three days at your worst, two really bad and two good. If I explain that his is at his worst for most of most days will that be considered acceptable?

This must be an issue for a lot of people I assume?

Thank you in advance for your help, it is much appreciated.

Thank you Bis

What is so difficult is how his condition varies wildly throughout any normal day. So, although, for most of any day (easily 70% - 80% of each day) he cannot walk any distance at all safely even once let along repeatedly, he will almost certainly have some brief periods where he can. He falls at least once most days and has been seen at a falls clinic so luckily we have the follow-up letter to that.

In addition to this - and I know this sounds very weird but is the absolute truth - although he generally cannot walk any distance at all safely he can ride a bike. He has an electric peddle assist cycle so that if he feels exhausted it can do most of the work for him and he manages to go out on that regularly for about half an hour (maybe three or four times a week) He needs help getting to and on the bike and help getting off it and getting back to the house but as far as actually riding it he doesn’t have a problem.

So, you see, I’m worried that if we say most of his days are bad all day they would, quite understandably I suppose, query why would he be able to ride a bike for a short time but not walk? I suppose it’s not a good idea to mention the bike at all but if he’s asked what his hobbies are or if he can take any exercise we really don’t want to risk lying. It’s frustrating as he keeps being told how important it is for his health to stay as active as possible and the bike is really the only way he can take any exercise. It’s also the only bit of independence he has left.

Similarly he can get around on a scooter - not a mobility scooter but a push along micro scooter. It sounds unlikely but it’s true. He can barely walk, falls over all the time, often can’t even raise a cup to his lips to drink or can’t unclasp his hand to put it down again but can ride a bike and a scooter. I wouldn’t believe it myself if I didn’t witness it day in day out.

Parkinson’s is such a complex condition and I know the assessors rarely have expert experience.

I’m so stressed about saying or doing the wrong thing but also about not mentioning something and it being found out and looking like we’re pretending he’s worse than he is.

Redshoes,

My husband has Parkinson’s and we’re waiting on the results of his PIP assessment. I completely understand all you are saying, because it is a very complex, highly variable and sometimes downright odd condition.

My best advice is from the start to realise that the DWP are following very particular guidelines regarding PIP and the only way you can make good on your application is to become very familiar with the descriptors and then consider how your husband’s limitations and symptoms can be explained in the context of each one.

Fair warning, this may take you a while. I had to ask for an extension and when finished I had added countless pages of extra information. I cannot emphasise enough how important it is to not only read the members guide on filling in the questionnaire but also reference the documents issued to assessors on the PIP guidelines. The links are to be found in the PIP section of the members guides. I found it invaluable to know the criteria that the DWP use for each activity because this helped me to clarify how symptoms restrict function. Please don’t assume anyone dealing with the claim will know anything about the condition. Spell everything out.

I leaned into my husband’s bad days, which as you say is generally the norm anyway. The only variation is which symptom is currently bad.

Honestly, I’d completely omit any reference to the bike or scooter. While I and anyone else intimately aware of how Parkinson’s weirdly manifests, I sincerely doubt you would be successful in explaining this. It’s not lying. It’s an exercise in pragmatism. The entire PIP assessment process is not fit for purpose and this is especially true for the neurological conditions. I had to explain what freezing of gait, Festination and bradykinesia were, and still I don’t think the DWP understand.

No matter. You have to play the game so learn the rules and play it well.

1. Read absolutely everything in the members PIP section.
Everything.

2. Read the forum. It’s amazing how many hints and tips it yields.

3. Get letters of medical support. I sent letters from my hubby’s Specialist Speech Therapist, his physiotherapist and occupational therapist. These are essential. Don’t be shy of asking for them.

4. Here’s one I wish I’d known in advance because it would have saved a traumatic face to face assessment that my husband is still suffering from. Get a STRONGLY WORDED letter from your GP requesting either a home assessment or better yet, paper based. Aside from being extremely stressful, a f2f is an exercise in redundancy.

5. Don’t concern yourself with anxieties about pretending he is worse than he is. I think as wives and carers we habituate to the slow progression and get into a habit of making light of things. While this is an excellent coping strategy it does you no favours here. Compartmentalise the PIP process in your mind and heart, go for broke. Tell them the truth about the worst of it. They won’t know if you don’t tell them.

6. It pains me deeply that out husbands fight this awful condition only to potentially become victims of their own success. We have to protect their spirit while forwarding the cause.

In sum, your worries are completely natural in the circumstances but you can lay them to rest.

Hope this helps a bit.

Dear Magdelena

Thank you so much for taking the time to send me such an extensive and helpful reply. I really am so very grateful and will take on board all your advice. Pointing me in the direction of the assessors guidelines will, I am sure, prove invaluable.

It is so very heartbreaking to watch someone you love struggle so with this terrible condition. Given the care and time you have been so kind to put into offering help to a stranger I can only conclude your husband is a very lucky man to have you fighting his corner.

I wish you the very best of luck and hope you will have good news following your husband’s assessment.

Kind regards and many thanks again.