PIP update

Today my PIP mandatory reconsideration arrived, quite ironic as my Motability car goes back on Monday! I had asked them to reconsider some of the points as they had said I could do things that I can’t.

It seems that they know better than me what I can and can’t do and they told me that their decision stays the same. Their summary is again a load of rubbish.

I also complained about the assessment itself, but the response I got was, sorry they didn’t mean to upset me!

This is what I asked them to look at;

“Preparing food

The decision letter says

“You said you have difficulties preparing food,.. I agree you have difficulties.”

There are no other references to preparing food in the decision text but I was awarded 2 points (you need and aid or appliance to be able to prepare or cook a simple meal). However, in my application and at the assessment I clearly stated that I was not able to peel or chop food due to pain in my wrists, nor lift pans or stand at the hob. In my view this equates to being unable to prepare and cook a simple meal.

Managing health conditions

The decision letter says

“You said you have difficulties… managing therapy or monitoring a health condition.”

There are no other references to managing health or medication in the decision text. However, I clearly stated in the application and at the assessment that I need to use a dose box to manage my medication to ensure I don’t forget or take double doses, although sometimes still do. I explained that need to write down what pain killers I have taken, and I sometimes need to ask my husband when I can take another dose. I also explained that I need someone to take me to medical appointment and sit with me as I struggle to understand what is being said. In my view this means I need an aid or appliance to manage my medication.


The decision letter says

“You maintained concentration throughout, understood the questions asked and answered appropriately.”

This makes no reference to the fact that I struggled to hear/understand almost every question that was asked and had to request the question was repeated or my husband to clarify for me. The assessor typed noisily throughout the assessment even after I explained that I could not hear properly. Concentrating throughout the assessment was exhausting. There is no reference to being unable to use the telephone, even with hearing aid and hearing aid compatible phone. Nor the difficulties I explained in engaging with others more generally due to concentration and hearing issues.


The decision letter says

“You said you have difficulties reading and understanding signs, symbols and words,…  You stated to the assessor that you like to read novels.”

There is no mention here of the difficulties I explained in in my application that if information is complex I struggle to follow or understand it (e.g. instruction booklets, medical information) and that  I get very confused if trying to follow a recipe or a pattern, and often do not retain the information.  Reading can make my dizziness worse unless I am lying down. Reading for more than a short time makes me feel nauseous. In my view this means that I need prompting or support to read and understand complex information.

Making budgeting decisions

The decision letter says

“You said you have difficulties… making budgeting decisions.”

There are no other references to budgeting decisions in the decision text but I was awarded 0 points. I stated clearly in my application and at the assessment that I have difficultly doing basic calculations, that the cognitive issues and fatigue associated with CFS/ME can make it hard to make price comparisons, and my husband has to handle all the household bills and finances. In my view this means I need assistance to make complex budgeting decisions.


The decision letter says

“Informal observations showed… you did not appear dizzy. You were observed to stand using the chair arms and walked from the from the assessment room door to your chair 5 metres. You did not appear unsteady on your feed, dizzy or breathless. You reported walking around your home and from car to door. You are able to drive. Driving requires a high level of concentration and cognitive ability. There is no evidence of any intellectual or cognitive impairment… ”

This makes no reference to what I said in the application and assessment about difficulties with walking. In particular, that (a) I find moving around the house a huge challenge and need to stop to rest after a short distance (b) I use a wheelchair outside the home (c) that even the minimal walking that I do causes significant or extreme pain as a result. I also cannot understand how walking 5 metres can then be translated into a decision that I can walk 20 to 50 metres.

The assessor’s comments about driving make no reference to the difficulties I explain and that I can only drive very short distances, and many times I am not well enough to drive at all. The distance from my front door to car door is less than 3 metres. I would not be able to plan a journey, by car or in my wheelchair, in an unknown place. At the assessment I was asked about following directions. I explained the I would be able to ask for directions as I would not be confident that I would hear the reply correctly. I was pushed on this question and eventually said that “in theory” I would be able to do it. I was deeply uncomfortable with this.

The comments in the decision letter say I “did not appear” dizzy. I experience near constant dizziness and an unsteady feeling. I don’t think a one person can observe whether another feels dizzy. Moving around makes the dizziness worse.

I was asked about whether I drive. Whilst the answer was yes, I only do so for short distances once or twice a week. The effort to concentrate is exhausting and I feel very unwell afterwards.

In the physical assessment the assessor pushed my limbs such that is was very uncomfortable and has then said I had only “slightly” reduced power. This is inaccurate.   

The assessor noted that my medication history shows that I do not take the full dose of prescribed pain killers. However, there is no reference to what I said in my application about additional over-the-counter medication or prescribed amitriptyline, nor the non-medication ways of managing pain including physiotherapy, pain relieving creams, TENS and heat pads. More fundamentally, the assessor makes no reference to my inability to repeat walking activities. The cumulative effect of walking short distances causes extreme pain and therefore I do not think it is reasonable to conclude that I can walk as far as 20 metres. Specifically, the guide for assessors states:

“When assessing whether the activity can be carried out reliably, consideration should be given to the manner in which the activity is completed. This includes, but is not limited to, the claimant’s gait, their speed, the risk of falls and symptoms or side effects that could affect their ability to complete the activity, such as pain, breathlessness and fatigue.

Repeatedly means completed as often during the day as the individual activity requires. Consideration needs to be given to the cumulative effects of symptoms such as pain and fatigue – i.e. whether completing the activity adversely affects the individual’s ability to subsequently complete other activities.”

Other issues

The decision letter says: “you are prescribed low dose first line medication for depression and are not under the care of the mental health team”. I take 20mg of fluoxetine – this is standard dose not low dose. I also take amitriptyline. I explained in my application that I am unable to take a higher dose due to the side effects I experienced. In terms of care, we are currently receiving support from the community family therapy service and I explained that I was on the waiting list for the CFS/ME service. I have now been seen and enclose a letter from them.

With respect to the face-to-face assessment, I felt that the questions asked did not enable me to represent the impact that my condition has on me and I didn’t know how to answer many of the questions. I was not allowed to expand on my answers and when my husband tried to do so he was not allowed. Sitting for the assessment was very uncomfortable and caused a lot of pain, both at the time and afterwards. More generally, I found the assessment very distressing and detrimental to mental health. I am awaiting mental health support from the NHS and I have had years of counselling, but I am not currently been seen as they feel they can’t give me the support I need.

Following the face-to-face assessment, I sent a letter of complaint. I include this for reference. “

Basically they have said in reply that none of what I said is true. It is an insult to have to explain all this to someone and for them to turn around and say that they know better.

This will be the end of the line for me. I could asked for a tribunal, but I would not be able to physically or mentally manage it and it would put even more pressure on me and my family to justify what we already know.

So I am drawing a line under it and accepting what they have allowed me. My motability car goes back on Monday and due to delays with our next car we will be without a car for about 6 weeks, which for me will be very isolating. Like everything else the return process has been far from straightforward and we are returning a day early as we expect there to be more problems and we can’t afford to lose the return payment due to other people’s incompetence.

It makes me feel like writing some naughty words on the bottom of the letter and sending it back to them, but it’s not worth the effort or postage. They would probably write back and say thank you for your comments we will get back to you in several months!

I am now closing the book on PIP, until next time of course, I have to go through it all again in about 2 years time!

I am going to concentrate on welcoming my new kitten in a couple of weeks and meeting Therapy Huskies next month.

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