Worked example by condition

PIP answers for Parkinson's

A worked example showing how each of the 12 PIP activities can be described by someone living with Parkinson's disease. Every answer is written in the first person, in the plain wording assessors look for, and each one weaves in the reliability factors that decide how an activity scores.

How Parkinson's affects a PIP claim

Parkinson's is much more than a tremor, and a form that only mentions shaking hands hands over a fraction of the picture. The slowness is often the bigger problem. Bradykinesia means every movement is smaller and takes longer to start and to finish, so ordinary jobs like doing up a shirt or getting through a meal stretch out to three or four times the time they used to take. Add the stiffness in the arms and legs, the freezing that stops you mid-step or mid-task as though your body has stalled, the balance that has gone, the voice that has gone quiet, and swallowing that no longer works properly, and you have a condition that reaches into almost every activity on the PIP2 form.

The hardest part to put into words is the on and off. Parkinson's medication works for a set number of hours and then wears off, so the same person can be managing at eleven in the morning and unable to get out of a chair by three in the afternoon. An assessor only ever sees one snapshot, and if your form describes your best hour that is the version they will work from. The rules are on your side here, because an activity only counts as something you can do if you can do it safely, to an acceptable standard, repeatedly and in a reasonable time. Being able to dress yourself once, an hour after your tablets, is not the same as being able to dress yourself, and your answers need to say so plainly.

Two things get left off Parkinson's forms far too often. The first is the early morning. Before the first dose of the day has taken effect most people are at their stiffest and slowest, and that is exactly when washing, dressing and breakfast happen, so describe what that hour really looks like instead of skipping ahead to how you are by midday. The second is the help you get and the help you go without: the wife who cuts up your food, the son who sets out the tablets, the shoes that had to be swapped for slip-ons, the dinners eaten cold because they take an hour. Put real numbers in wherever you can, such as how long a task takes, how many hours a day you are off, and how often you choke, freeze or fall in a week. The example below does exactly that, activity by activity. The DWP always makes the final decision, but describing your day accurately gives your form the strongest chance of being understood.

How your health condition affects youPIP2 · Q4
4. Eating and drinking
Does your condition affect you eating and drinking? (Put a cross in one box below)
✓ Yes
Tell us about the difficulties you have with eating and drinking and how you manage them.
Eating and drinking has become one of the hardest parts of my day since my Parkinson's progressed. The tremor in my right hand means I cannot hold a fork or spoon steady, so food shakes off before it reaches my mouth and I spill tea and water down myself most days. I use weighted cutlery with thick handles and a two-handled beaker with a lid, and even with those my wife has to cut everything up for me before I start, because I cannot grip a knife firmly enough to cut meat or anything solid. The bigger worry is my swallowing. Food and drink go down the wrong way and I choke and cough badly two or three times a week, so my wife sits with me through every meal in case it happens again, and I have been told to take small mouthfuls and to thicken my drinks. The time of day decides how bad it is. First thing in the morning, before my medication has started working, I cannot get a cup to my mouth at all and she has to hold it for me, and it goes the same way in the afternoon when a dose wears off and I go off. Everything I do is slow now, so a normal meal takes me forty-five minutes to an hour and it is stone cold long before I finish. I cannot eat and drink safely without her there, or in anything close to a reasonable time.
★ Suggested descriptor · 4b · 2 points
Weighted cutlery, a lidded beaker, someone cutting your food up and someone sitting with you because of choking all count here, so name each one and say how often the choking happens.
How your health condition affects youPIP2 · Q8
8. Dressing and undressing
Does your condition affect you dressing or undressing? (Put a cross in one box below)
✓ Yes
Tell us about the difficulties you have with dressing and undressing and how you manage them.
I cannot dress or undress on my own because of the stiffness, tremor and slowness my Parkinson's causes. Buttons and zips are impossible. My fingers are rigid and shaking and I cannot line a button up with the hole or start a zip, so my wife fastens my shirt, my trousers and my coat every single day and does my belt buckle for me. I cannot manage socks and shoes either, because I am not able to bend down and hold my balance at the same time and I have gone over doing it, so she puts them on while I sit on the edge of the bed. I have a long-handled shoehorn and a button hook, and most of my clothes have been changed to jogging bottoms, slip-on shoes and jumpers I can pull over my head, and I still need her help even in those. The mornings are the worst. Before my first tablets have taken effect I am so stiff I cannot get my arm into a sleeve at all, and I have sat on the bed for over an hour in my pyjamas waiting for the medication to work before I could be dressed. When I try alone it takes me forty minutes to an hour and I often freeze part way through, standing there with one arm in a sleeve unable to make my body carry on. Getting undressed at night is just as bad, because by then my last dose has worn off.
★ Suggested descriptor · 8e · 4 points
Say who does your buttons and zips for you, how long dressing takes when you try alone, and that the help is needed most first thing before the medication works.
The other activities

What to cover for each one. Your paid form writes the full answers for you.

Q3

Preparing food

What to mention

Describe what a tremor does to peeling, chopping and lifting a hot pan, and say plainly whether you have dropped, spilled or burnt yourself doing it. Mention slowness and any freezing that leaves a meal half made, along with the aids you rely on such as a perching stool, a spiked chopping board or using the microwave instead of the hob. Be clear about the difference between a good hour after your tablets and the hours when you are off and nothing gets finished.

Q5

Managing your treatments

What to mention

Parkinson's medication only works if it is taken to the clock, so say how many doses you take a day, how exact the timing has to be and what actually happens to you when a dose is late or missed. Mention any dosette box, alarms or the person who sets your tablets out and reminds you, and any pump, patches or home physiotherapy you have to manage. Say if the tremor and stiffness make getting tablets out of a blister pack difficult on your own.

Q6

Washing and bathing

What to mention

Describe how stiffness, poor balance and slowness make getting in and out of a bath or shower unsafe, and mention a shower seat, grab rails or a bath board if you use them. Explain what you cannot reach or manage properly, such as washing your hair or your back, and how much longer the whole thing takes now. Say who has to stay within earshot in case you freeze or fall, and how different it is first thing before your medication works.

Q7

Using the toilet and managing incontinence

What to mention

Explain the difficulty getting on and off the toilet when you are stiff or off, and mention a raised seat, grab rails or anyone who has to help you. Describe the clothing side of it too, because belts, buttons and zips have to be managed quickly and that is exactly what your hands cannot do. Include any urgency or accidents caused by not being able to get there and undressed in time, and say how often that happens rather than only that it sometimes does.

Q9

Talking, listening and understanding

What to mention

If your voice has gone quiet, flat or slurred, say so and describe what it means in practice: being asked to repeat yourself, not being heard from the next room, giving up on phone calls. Mention any speech and language therapy you have had and anyone who has to repeat things for you or speak on your behalf. Keep this answer to how well you are understood rather than to how much you get out of the house.

Q10

Reading

What to mention

This one is about taking in and understanding written information, so tiny cramped handwriting is not what it asks about. What can count with Parkinson's is blurred or double vision and eye movements that make you lose your place on the line, or the memory and concentration changes that mean an official letter has to be read through with you more than once before it stays. Mention who does that for you and what has been missed when nobody did. If you can read a letter or a road sign and take it in on your own, leave this one alone.

Q11

Mixing with other people

What to mention

Describe how the tremor, the loss of expression in your face and not being heard make you avoid company, and whether embarrassment or low mood keeps you at home. Mention the encouragement or the company you need before you will face seeing anyone, and how often plans get cancelled on an off day. Keep it about coping with people rather than about physically getting there, which belongs in the mobility questions.

Q12

Managing money

What to mention

This asks about the money decisions themselves, not about how slow and fiddly coins and cards have become, which is a hand difficulty and belongs with the activities that cover your hands. What can count with Parkinson's is the memory and concentration changes that make bills, direct debits and budgeting hard to keep on top of, so if someone has had to take that over, say what was going wrong before they did. Some Parkinson's medicines can also bring on impulsive spending, and if that has happened to you it belongs here and is worth raising with your specialist. If the decisions themselves are still fine, leave this one alone.

Q13

Planning and following a journey

What to mention

Explain what freezing and unsteadiness do to leaving the house, and whether you will only go out if someone is with you in case you stall at a kerb or a doorway. Describe any anxiety about being stranded if your medication wears off while you are out, and any difficulty working out or holding on to an unfamiliar route. Leave the walking distance itself for the moving around question so both answers stay credible.

Q14

Moving around

What to mention

Give the distance you can manage on a normal day and say what forces you to stop, whether that is freezing, a shuffling gait, pain or the fear of going over. Mention your walking aid, anyone who walks beside you and any falls you have had, including what caused them. Make clear whether you could cover that distance again after a rest, and how much shorter it gets when you are off.

Your own answers, for every activity

The tips above are general pointers. Your paid form gives you a full, ready-to-copy answer for all 12 activities, written from your exact conditions, medication, aids and bad days, not a general example. This is a worked example for Parkinson's; yours is written for you. £99.99 one-off.

How to use this example

This is a worked example, not a script. It shows one honest way a person with Parkinson's might describe their worst and most common days, so you can see the level of detail and the plain wording that assessors are trained to look for. Please do not copy it word for word. Your own answers should reflect your Parkinson's, your own tremor, stiffness and freezing, the aids you actually use and the help you actually get or go without, because that is what the assessment is about and that is what makes an answer ring true. Parkinson's affects everybody differently and changes over time, so write about the stage you are at now rather than how you were a year ago.

Some of the activities will not apply to you at all, and that is fine. Being honest about what Parkinson's does not change makes the difficulties you do describe more believable, so there is no need to stretch every question. The suggested descriptor on each card is only there to show which difficulty the answer is pointing at; never write a descriptor letter or a point number on your real form, because the assessor works those out and the decision is always the DWP's. If you would rather start from your own words, tell us about your health and we will write your answers from your own conditions, in the same first-person style, ready for you to read, edit and copy onto your PIP2 claim form or AR1 review form.

K
Karol Slusarczyk
Founder, FillMyPIP · t/a Benefits Expert · ICO:00014179042

I have spent years helping people describe their conditions accurately on PIP forms, and I built FillMyPIP from that experience. Parkinson's forms are often far too short, because people write down the tremor and leave out the slowness, the freezing and the hours of the day when the medication has worn off. I wrote this worked example to show, honestly, the kind of detail and wording that helps an assessor understand a real day with Parkinson's. I am not a solicitor, a doctor or a DWP employee, and this is guidance, not legal or medical advice.

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