PIP and ESA - what do you think?

Hi everyone,

Judging by all the topics on the forum talking about PIP at the moment, it certainly is a hot topic! I thought you all might be interested to know that there are two new consultation opportunities (on PIP and ESA) for working age people with Parkinson’s who have applied for benefits recently.

You can either feed into our response or go direct, all the information is below.



Employment and Support Allowance

If you have applied for Employment and Support Allowance (ESA) recently, after having to give up work due to your Parkinson’s, there is an opportunity to share your views and also let us have your experiences.

The independent review of the way in which people are assessed for this important benefit – called the Work Capability Assessment - is now taking evidence.

Last year the reviewer, Dr Paul Litchfield, recommended the government ceases frequent and face to face assessments of those with conditions like advanced Parkinson’s in the ESA Support Group, calling this neither “practical nor compassionate”.  The government accepted this and are now looking at the reforms of the process, although this is taking time.

However, still to be addressed is why people affected by Parkinson’s can often be placed in the Work Related Activity Group and told they will “recover” enough to return to work, or even told they are fit to work, despite having worked for as long as they can already.

Dr Litchfield is looking at experiences not just of what people have been told, but also of the way the assessment took place and how people felt they were treated. You can share your story with him via his  questionnaire which runs until 15 August 2014.

Or you can help us with the Parkinson’s UK response and contact Donna in the campaigns team on [email protected] or tel: 020 7963 9307

Personal Independence Payment

Some people affected by Parkinson’s have applied for this new benefit, that replaces Disability Living Allowance for those of working age, in recent months. We know the delays in getting a decision on the application have caused real hardship for many.

Now is your chance to have your say to an independent review of PIP, which is looking at how it was introduced and people’s current experiences. The government will get the report from the review at the end of the year and will have to respond to what the recommendations are.

We’ll be writing a response from Parkinson’s UK, so you can either share your views and experiences with us (email Donna in the campaigns team on [email protected] or tel: 020 7963 9307) or respond direct to the reviewer, Paul Gray, who is running an online survey. The consultation is open until 5 September 2014.

Well i for one will certainly  be having my say , i did click the link  to the online survey spent ages filling it in only to come up with a error at the endconfused

To save me trying to fill it all out again  maybe Donna O'Brien still has my story from when i spoke to Ros Wynne Jones maybe she could use that ?

Well where can I start oh 44 weeks to get a outcome,atos couldn't do my face to face assessment had to bring in a person from mulberry health to do the assessment the person tried there best but had little or no experience  75% of the questions were not relevant to my conditions,this has resulted in a poor assessment and not the outcome we expected.


I missed out on PIP by two points, Despite not being able to prepare meals without help, And not being able to lift pans i was classed by my assessor as being capable of preparing a meal. When I had my phone call I was informed that the assessor had made this judgement after performing her neurological tests.

How can a person who is not a neurologist be qualified in making that judgement. I have put in a manditory reconsideration request. My Parkinsons support worker studied the report and found many inconsistancies between the report and the points I was awarded.

I also explained that I could not take an unfamiliar journey without being accompanied again she dismissed as my husband drove me everywhere I needed to go. That is why my husband has to take me places!!

My fluctuating condition was not taken into account and was informed that it wasnt thought that Parkinsons had an affect on my daily living.

When I tried to explain that I had not long taken my medication this was also dismissed out of hand.

The whole assessment system must be reviewed and it should be taken into account that the symptoms of Parkinsons can vary from day to day and even hour to hour. They seem to have a very poor knowledge of this condition and the questions are not flexible to take this into account. My support worker has written me a letter informing them f how Parkinsons Disease is a very individual condition and this must be reflected when making their decisions. But I was informed that as she had no medical knowledge it probably wouldnt help, And yet the decison maker is also not medically qualified, How is this fair!!

that's a absolute Farce Candy.

I also cannot cook for myself or lift pans or trays for fear of the wobble that ensues, i've tried and failed, it's dam right dangerous, in actual fact My job was and used too be Catering, If ever get too one of these assessments and i'll surely fail because the dice are so loaded against the ill and sick, and then pushed back into work, I am 100% sure no employer would tolerate a employee within a kitchen who is not only a danger too themselves but also too others, And on that point You Must qualify for the above.


I cant really comment to much on ESA at the minute , i started getting ESA early June i had not even had a first payment or received notification of the award before a work capability questionairre dropped through the door , all information and medical evidence has been sent to Atos  i have sent enough information for them to do a paper review so we will seeif i am stilled called for a assessment  ....to be continued

PIP and ESA are no longer the much needed safety net for the sick and disabled , they were implemented for one reason and that was to save money , DWP employ health assessors who have no knowledge of Parkinsons and the effects it has on our day to day lives maybe they should spend a day in our shoes and then maybe they will understand the difficulties we have to overcome not day to day but what can be hour to hour ,  in a bid to save money they would rather listen to a unqualified health assessor than a qualified Neurologist , how uncompassionate and down right patronising to say Parkinsons has no effect on your daily life

Well said shelly65

                       I walk with 2 arm crutches can manage 20-30 yards,have to have assistance when I go out my dad who is 80 takes me to most of my appointments,yet I was awarded standard rate mobility,I can't cook a meal the last time I tried I forgot to turn the gas off and melted the pan,as for dressing unaided I can't do buttons,laces,and put socks on and struggle with t shirts I can manage my trousers with a bit of moaning joggy bottoms anything with buttons or zips is a no no,but alas standard rate pip,my points score was worked out with my Parkinson's nurse who scored 18 for mobility and 26 for pip,but the assessor must have scored me a lot lower.



Have you requested a copy of the assessment report  from DWP  you can then check what the assessor said in there report against what DWP awarded you , if you do not have the report then phone up DWP and request one  there have been a few cases where the health assessors have stated things in there reports and DWP  choose to disregard what the assessors state in there reports , so that brings the question why bother putting people through these assessments when dwp decision makers  ignore the reports .As i said before it is about saving money nothing more

I said to my assessor when  he came that i struggled with hooks on under garments bras especially  and his reply was ' dont wear one ' red face not what you expect from a health professional

I agree with all of the above comments, Yes Sea Angler you are so right it is an absolute farce, If you are a danger to yourself and others in the kitchen then you are not able to carry out tasks to a safe standard which  obviously will impact on your daily life,

As A wife and mother I have spent years preparing meals for my family and to not be able to do so anymore is very upsetting for me.

I was disgusted that Shelly was told not wear a bra, How rude and utterly insensitive.

PIP is totally unfit for purpose and is denying the sick and disabled the extra help needed to cope with having a life long debilitating condition.

Yet again the most vulnerable members of society are targeted by an uncaring government, Who are only interested in making the well off even more well off.

I have worked and have paid taxes like all of you have I am sure, And to be told that you have a lifelong degenerative neurological condition is bad enough, But then to be told when you need some extra help that you are able to live a normal life is quite insulting.

It is about time this unfair benefit is scrapped and that people who genuinely deserve it get the help they need. After all we didnt ask to have this illness.

Well said Candy, i have no idea if the assessors comment was meant has dont wear a bra problem solved or dont wear a bra in a suggestive manner but either way not a comment you would expect from a assessor.

Hi Shelly, My support worker was horrified when she read what the assessor had put about the lighter pans, She didnt think it was a professional thing to say, 

She also put that I had a perching stool and that I could use this in my kitchen, She didnt even look in my kitchen and if I sat on my perching stool I wouldnt be able to even reach anything in my kitchen.

It does make you wonder if they get a bonus for every claim they manage to get turned down.

Nothing would surprise me Candy , i have a perching stool  i told the assessor i had one but he still  put  me down has only able to use microwave   and the decision maker accepted the points  different assessors/ decision makers  have different ideas on how  points should be awarded which is not how the system should work

Hello in the ladies post from Parkinsons uk she said to email Donna so hopefully all thats been put in this thread can be communicated to Donna as its all relevant and sad as it is all true of peoples experience with this benefit. I firmly believe it is weighted against the disabled and people who like myself have worked all my life and now find myself disabled should not be treated in this way it needs to be fair and objective going forward


I was awarded 13 points by atos which gave me enhanced daily living the dwp decision maker took it upon himself to take 2 points off me so I was then only awarded standard daily living allowance how very convenient for them and when he phoned me he was ignorant and rude it was awful i could not get my point across and when i said i was going for mandatory reconsideration he did not like it one bit basically he tried to bully me in to submission and then he said if you go for appeal we will have to look at the whole award again so basically thats a covert approach to try and get you to give up were is the fairness in that.

I was not awarded mobility because they say I can walk 50 to 200 yards 4 points only but there are days I can walk less and am in pain who came up with 200 hundred yard or meteres its silly what happens if the bus stop is 500 yards away for example or further there saying if you can walk the first 200 your not entitled to mobility what you supposed to when you stop at 201 yards shout to the bus driver or wave a flag send out distress signals its absolutely ridiculous to deny a parkinsons sufferer mobility the very nature of this condition merits the need for mobility and its one of main neurological problems we all suffer from fluctuating from day to day I think the questions in the mobility side are designed to deny the benefit the daily living questions I feel re allot more relevant and fairer thats my opinion which does not mean I am right I mean how come theres 10 questions for daily living and only 2 for mobility so you have less chance of getting it. Its a cynical attempt to deny the needy and save money and I wish Parkinsons uk all the best in putting things that people have written forward because its al about personal experiences thats what counts at the end of the day.....................Paul

Hi everyone,

Thank you for all your comments so far, I will be feeding them (and any future comments) back to Donna as it's all really useful.

Shelly65, sorry that you got the error message after taking the time to fill it out. I'm sure Donna is aware of your story so can use that to feed into the response.

Thanks again all,



I have all this to go through yet having applied for PIP in May (not heard anything yet) I am unwillingly retiring in September but would love to do part time, but I feel I am unsafe at times in the kitchen where I work because of my off balance moments, slowness in movement, not being able to hold heavy or awkward items, not being able to take things out of the oven/off the hob not being able to serve meals in a safe way or being fast enough, the more I try my shakes take over. I feel I am 'in the way' Even though my employer understands my situation I still fell surplus to requirements. How can they, the DWP expect anyone get a job with these problems.

Doubt there are many employers that would give us a job . if you cannot do something safely , reliably in a reasonable amount of time and repeatedly then you qualify for PIP , what employer is going to hire someone who cant do any of these thing ,if you cannot do something safely then the health and safety comes into play , but some people with parkinsons are put into the work group  the need to save money over ruled any sense of logic .

Well said Shelly So say the scenario is a person with Parkinsons gets put in the work group and they apply for work and cause an accident to either themselves or to others then that is an offence under the health and safety at work act 1974 as amended.

Take reasonable care of your own and other peoples safety and cooperate with your employer on health and safety

so basically  the dwp could be sued by the health and safety executive for breaching legislation as you say logic does not seem to apply................Paul

Not where the need to save money comes in logic seems to go flying out the window .