PIP after DBS

Living with Parkinson's Work, benefits and money
1

Hi All,

I am in the process of being evaluated for DBS. In the meantime, my condition, especially movement has worsened and I probably now qualify for the upper mobility part, as well as Higher Daily Living element I already qualify for.

I do not know if I will be approved for DBS, but they said surgery is likely to be this year if I am, although it probably won’t be activated for 6 months.

Two questions:

  1. is it worth me reporting the worsening of my condition now (given I might have had the surgery by the time it’s completed); If I go onto full PIP this, in theory, would mean I am now longer reassessed. In theory, but I should need to inform them of an improvement.
  2. If I have the surgery and it works well, presumably this should be reported to DWP, and I will the lose the PIP until my condition worsens significantly, and go through the whole assessment process again?

I am scared of the loss of income as it effectively means I will be ‘paying’ (though not really) £6000 per year for the surgery! This will be painful, as you come to rely on this ‘income’ although, hopefully, my living costs will go down.

Won’t stop ME getting it done, but I imagine this has been a consideration for some, especially if they haven’t been working. Has anyone not had the surgery due to this cost?

Any thoughts or advise will be welcome.

2

Hi FamilyMan44,

Thank you so much for reaching out for support. Our Helpline team will be able to give you advice regarding your questions about PIP. You can call them for free on: 0808 800 0303.

Wishing you the best of luck with your DBS journey. Please do keep us updated.

Best wishes
Parkinson’s UK Moderation Team

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Hi @Wildrover - thank you for reaching out to the forum for support.

Our Helpline team will be able to give you advice regarding your questions about PIP. You can call them for free on: 0808 800 0303.

Wishing you the best of luck. Please do keep us updated.

Best wishes
Parkinson’s UK Moderation Team

5

Hello,

I am in exactly the same position. I receive the enhanced rate for both daily living and mobility. My mobility has drastically gone down hill over the last 12 months. It has alot to do with dystonia in my left foot and arthritis in both knees. I am currently on the waiting list for DBS and have been promised that I will have the operation before xmas. My guess is it will be done in the next few months, as i have already completed the pre-op form.

Like you I have become dependant on the income. I have some savings but if the PIP income is removed that won’t take long to disappear.

If the surgery is successful, It will be a given that I would certainly lose the mobility element.

Also despite some information on the internet its not a case that it is switched on and your cured. The process can take months of tweaking. So when do you report the DBS to DWP. Straight after surgery or when its fully operational.

The worry is the Parkinson’s non motor symptoms will still be there, An example of this is I have chronic insomnia and daytime fatigue. it is horrendous and seriously debilitating . That alone has prevented me from working despite all the other crap that Parkinson’s gifts you. I certainly would not cancel the operation. I would live in a cardboard box if i had my health back. I am ex military and had to leave a very well paid job due to my health condition.

But like you FamilyMan44, this is a tough one to deal with. I am 58 years old and was diagnosed 8 years ago. So even if I was fit enough who the hell is going to employ me with Parkinson’s that has progressed who can’t say a sentence without stammering and unable to complete a sentence without losing my train of thought. The DWP don’t seem to give a toss about things like that and even more so under the current climate. It’s a bloody nightmare.

I would love to get some feedback on what is the best and moral thing to do.

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You might be in a slightly better position than you think @wildrover.

Does your PIP have a reassessment date?

Because you are on the full award, Appendix 8 of the Work and Capability assessment guide says something about Parkinson’s being one of the conditions that will not improve, so you should not need reassessing and have that assessment date removed. I’m not sure if this is especially PIP rather than the capacity to work, but when I was assessed, they mentioned that I would be reassessed as I was not on the full mobility award, and it was in my favour to be reassessed.

https://assets.publishing.service.gov.uk/media/67fe3497b73354468d13546c/wca-handbook.docx Page 177 and Appendix 8.
If you mention this to DWP and say you don’t want a reassessment, they MIGHT remove the need.
If you already have no reassessment date, then this becomes a ‘should I say or not’, but DBS is far from a cure, and it might be a year before you get the full benefits before they slowly fade again.

Whether you are comfortable with this is up to you. It doesn’t apply to me, so moral dilemma averted :rofl:

1 Like
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Hello FamilyMan44. Thankyou so much for the feedback. I am not sure what it all al means if I am honest. I was awarded the enhanced mobility rate last year after going to tribunal. Well i didn’t actually go. Initially upon the last review the DWP in my eyes completely ignored information I was giving them about falling, I can barely walk without falling, I use a stick which helps a tad and I am usually holding onto my wife whenever i move around the house. It has not changed and its only a matter of time before I have a major fall. I have recently broke my metatarsal in my foot because of dystonia and trying to stop my falls by shuffling my steps which are around 15 a day at least. I put in a mandatory reconsideration and it came back with they are sticking to their original decision. They still awarded me the standard rate for mobility. I left it at that until nearly 4 weeks later and a day with loosing count on the number of falls I was experiencing. I decided to take them to Tribunal. Just before the DWP had to come back to the tribunal they had a reconsideration and decided they would give me the enhanced rate… they were just trying it on.

I have not been given a review date as such they have just said they will pay me PIP until May 2029.

So do I tell them about DBS or not, depending of course what the final outcome will be. Or just wait until the review letter drops on the door mat. Baring in mind that the Parkinson’s will have advanced further by then anyway and who knows how i will be

Decisions decisions !!!

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I don’t have the experience, but as far as I know, you can ask not to be reviewed, as it is stressful, and in Parkinson’s, unnecessary, and Appendix 8 of the guide I posted a link to states that (but it is not PIP specific).

You are then free to contact them if your circumstances change after the operation; however, as I understand, this will likely be many months afterwards, and you cannot know in advance how effective it will be.

It would be useful if someone who has challenged the review date could comment.

Certainly when I was going through the appeal process, they mentioned they would put a reassessment date on, rather than leave it open, because I had not qualified for the full Mobility section.

FYI, my experience with PIP: I applied, did an interview by phone, and was told I did not qualify. I appealed their decision, they improved this to full daily living element after another long call, this time with someone who sounded over 12, but no mobility points at all, which really pee’d me off as this was my major difficulty. They asked ‘Does this mean you won’t continue to tribunal?’, to which I replied that I would go to tribunal because the mobility element didn’t reflect my circumstances and explained why.

They were then able to find the 8 points needed for the lower mobility rate, by applying the ‘reasonable time or manner’ interpretation that they should have, which I agreed to because it got me a blue badge which meant I could park in spaces large enough to get the door open fully, because I was sick of not being able to get into the car because another car was parked too close, but not so close that a ‘normal’ person couldn’t get in or out, just people like me who cannot manoeuvre themselves.

I almost definitely would have got full mobility at tribunal (and definitely would now) but the whole thing was too stressful and I just wanted an end to it. I work full time, which is really hard, and have 2 children in full time education, and a wife who doesn’t like me, so I have enough stress already!

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Thanks for the response and sorry for all the stress you have endured. I have similar stories to tell but that’s for another day. I will just have to wait to see what happens. The way things are going in downing street there might not be any PIP…