My PIP Assessment Nightmare

When Money Gets In The Way!

This is not the first time I have had to fight for my benefits and a decentish standard of living, let us face it nothing is as good as going to work, especially if you are losing a professional income.


First, it was ESA (Employment and Support Allowance) which took ages to sort out and I lost over £600 in the process. Once sorted and after literally months of waiting, I thought that everything was ok and stable. AND then what did they do? They brought out PIP (Personal Independence Payment) to replace DLA (Disability Living Allowance). Why did they do this? The whole process of changing over paperwork, staff training etc must have cost a fortune and I know it cost a great deal in bloodshed and tears from the claimants. Was this worth it? I just feel it was the Government, as usual, wasting taxpayers money. All they had to do was tighten up an existing very good scheme.

My first experience with PIP and the assessment process was with my son and I have done a section about this you can read it here, my sons PIP assessment nightmare. This was quite a while ago and I felt with all my experience from my sons’ assessment and also the fact that they would have improved the process because of some big government reviews they had been part of, it would be a slam dunk experience. Was I right NO!your-benefits-are-changing

This experience has been made a much more stressful one than necessary. I received my assessment through the post and the same day an altered assessment for my ESA (two bad letters at once). Because they had stopped paying me for some unknown reason the personal care part of my PIP I also lost my Severe Disablement addition to my employment and support assessment. That counts for at least £110 a week cut in my income. A 55% wage cut in fact. I wonder if the government could manage on a 55% cut of next to nothing. So now I have to do a counter letter to them including as much evidence I can of my condition. It’s so blinking degrading this is something they do not seem to understand. The majority of people do not like going on about how ill they are it depresses you. I try to stay positive and upbeat and this does not help when it comes to being assessed so I am now in the process of letting them know how limited my life is with a 24% lung function. The only time I feel normal is sat down and that’s the honest truth, anything more than that and I am breathless and when I am ill, I am breathless just talking. I am also on paliative care and have a DNR set up. I am down for paliative oxygen assessment too. It’s not an easy life having COPD and I feel the government is trying to punish us for being ill. It smacks of the Nazis who thought ill people were a strain on the economy and not worth a life. 

I am now going to get on with my PIP mandatory reconsideration and will let you all know how this turns out. I will post as soon as I receive an answer and living on £51 a week will definitely be a challenge until they have completed the new assessment. Hope they won’t take too long.


Have now sent off my PIP mandatory reconsideration. I also sent a query through to my local MP to see if they could help and they said that the DWP is very busy at the moment and it could take a while. Well, whose fault is that! 

This PIP MR (mandatory reconsideration), took me all week to write. I also had to ask my GP for a letter which he had ready for me in a few days and he also printed out a letter from my consultant that he had received. He was very helpful and did not charge me a penny for the letter. It took me a full day to counter their decisions on 6 sections. I went through each one stating their reasoning and then mine. It was a nightmare to do and it just makes it worse thinking that I will have to go through this in 3 years time again! So much wasted time and money on their behalf as my illness is degenerative I am never going to get any better, its total madness.images

One of the main things that I wanted to mention this week was the ruling for claiming a higher rate daily care or the higher rate mobility component during the PIP assessment process. It seems that there is some confusion about coming off one benefit and going onto another. I have wanted to claim the higher rate DLA now for some months and thought that I would have my claim backdated if I was successful. At the moment I am just in receipt of the middle rate personal care component of DLA. I was under the impression that when my letter came through informing my change from DLA to PIP that if I received the higher rate allowance it would be backdated to when I first applied for my PIP which was March this year. I asked PIP about this when I rang to start the process for my mandatory reconsideration and they said that the claim is not backdated at all if you are successful it will be paid from the second week in September and that I was still classed as being on DLA until then. 

I had a good think about the situation and thought if I was still on DLA officially thendownload surely I could put in another claim for the high rate to cover me from March this year to September when my benefit changed to PIP. I immediately rang up DLA to request they start up a claim for the higher rate DLA for these lost months. The lady I spoke to was unbelievably unhelpful. She sounded like a bored secretary, in fact, I would not have been surprised if she had been reading a book while she was talking to me! She informed me that DLA is not doing any further assessments at all and haven’t been doing for some time. So I asked her what was I supposed to do she said that I have a few weeks with my old amount of DLA and that should give me a few weeks to adjust to a lower amount of money. She made me feel that they were doing me a great favour by letting me keep my middle rate care for a further 4 weeks. I could have flipped at that point but I was just so shocked at her complete lack of interest in her job I was left speechless, unbelievable!



MY PIP EXPERIENCE – A complete fiasco!

13516453_10204886428121095_43629211516051569_nBeing an ex Civil Service employee and decision maker in the benefits system myself, I can empathise to some extent with the majority of staff that are now running the PIP (ATOS and DWP) benefit because many are woefully ill equipped to make decisions on such a serious and complicated benefit. You cannot be thrown into making serious decisions about people’s lives without comprehensive training and knowledge.


A private company have taken over the job of the medical assessments (ATOS) because it is saving the government money, or so they think, or they have a misguided opinion that it is going to be a more efficient way of doing things.  These people are not trained and knowledgeable enough about the benefits and people they are assessing. These assessments are carried out by a health professional employed by ATOS. They will write a report and the report is then sent onto the DWP for a decision maker to look at. AND THIS IS WHERE EVERYTHING STARTS TO GO WRONG, THESE ASSESSMENTS ARE USELESS IN A LOT OF CASES.

A report provided by The National Audit Office in January this year revealed the costly chaos that has engulfed outsourced assessments –

  • Over the three years from April 2015 to March 2018, the DWP expects to spend a staggering £1.6 billion on medical assessments.

No wonder Iain Duncan Smith resigned he knew what was coming!

The health professional who came to my house to assess my son’s abilities was an ex-paramedic. I am sorry, but how can an ex-paramedic be knowledgeable enough to assess someone with an acquired brain injury. He awarded my son zero points! This is where the government are losing the most money, previously assessments were done by your own doctor/specialists. You would get reports from the doctor and any other professionals that were working with you and send them in with the application form. Thousands of pounds could be saved by doing it this way and a more accurate information base obtained from people who actually know the claimant. A disability like brain injury in 13510899_10204886441681434_4795149399637844784_nthe moderate to severe category can be hidden and is not always obvious, it needs qualified professionals to do an accurate assessment. My son had received DLA since he was 12, (he is now 26) he had middle rate care and lower rate mobility and through a 15 minute assessment by a paramedic he was classed as not needing help any longer. Unbelieveable! This assessment is then sent onto the DWP for their decision makers to look at.

download (2)

They are called Decision Makers and because of this they should have minimum educational qualifications and extensive training. I can remember my first months working for the Benefits Agency as a trainee Benefits Officer (Decision Maker). There were six trainees in total and we sat at a big table at the top of the office and were not trusted as yet to deal with the public. In fact we did not deal with the public for six months! Every day for six months was used for training and learning the benefits system. Also, we had customer service days, these days we learnt how to deal with the general public efficiently and politely. I am not saying it was a perfect system but at least we were professionals and the job we did, we were trained rigorously for. We knew all the rules and regulations for the job we were assigned to do and we did that job very well, we looked like and were professionals. The CAB has realised a problem with the PIP assessments they said in a recent report –

The scale of the problem with personal independence payments (PIP) means that needing help with the benefit is now the most common reason for approaching the national charity Citizens Advice charity, new figures show…..

Staff who work for the DWP now are not trained rigorously enough, it seems that because computers do most of the work these days, the people who put the information into them do not need to be educated and trained. This is wrong, computers cannot be relied on when it comes to human and medical issues.

During the past few weeks I have had to deal with quite a few people associated with my son’s PIP claim, mostly on the phone. The first line staff that you have to deal with when you first contact the customer service department are employed by the DWP however, it is just like a call centre and some  are not trained well enough. Obviously it seems from my experience that anyone can do this job they know exactly zilch about your claim and it’s worse than useless ringing them up, it’s a complete waste of time and money. I phoned them twice this week to ask if my son’s claim had been dealt with and both times all they said was it takes 8 to 9 weeks for the assessment to be completed and that is it. The actual decision makers are uncontactable, see part two for more on this.

After being in hospital for almost 2 weeks with my own illness, I had to come home faced with this NIL decision of my sons knowing that I had to write a rebuttal to his assessment. You can however, have a phone call for the reassessment but I was advised not to by someone who had also gone through this process. I would have had a higher rate of it going to appeal and more delays if I did it that way. So I took the written response rout, it took me all day and 7 pages later and with a letter received from his GP and a booklet about brain injury and its effects on people, it was immediately sent off by recorded delivery, that was on the 23rd June. I will let you all know the outcome and I hope for his sake we do not have to go to Appeal because it’s all delay, delay. And this means less money for longer and for someone with brain damage to the frontal lobe this is no easy task to process as all of his emotions are exaggerated.


It is now 16th July, they received the written response on Monday 27th June and we are still1546 no closer to a decision. The indecision has made my son very ill and having to deal with him is not helping me either. I have rang them up almost every day and last week they informed me for the first time, that I could actually request a phone call from his caseworker! I was so excited about this so asked immediately for this referral but was informed, ‘the computers are down at the moment but ring back tomorrow’.Of course I did that and was told that someone would ring me soon usually within the next 24hrs. I kept checking my phone all day and telling all my callers I could not talk because I was expecting an important call, but no one rang. I rang the following day again and was informed that it could take a week before they contacted me if they were busy, I felt like screaming at that point, I felt like I was getting no where at the same time my son was unravelling more each day so I decided to contact my local MP. He replied quite quickly and he contacted the DWP’s MP Liaison Team at the Yorkshire Benefit Centre. I really hope that they will be able to help sort this out as quickly as possible for my sons sake. Will let you know my progress. 

It is now 22nd July and I have been through every web site and help site that I can in order to do the best for my son. I still haven’t heard from the Decision Maker whom I requested a call back from on the 14th July. I phoned PIP this morning and said that we have not heard from the Decision Maker and the call centre woman said that, ‘it is down on your sons file to ring and they have 5 days but if they are very busy it can take longer’. I said it’s been 6 days now, unbelievable!

I feel that the worse part of this whole process is the lack of communication between you and the actually people who are doing the job. You have got this receptionist, call centre person fobbing you off every time you call, like a secretary saying her boss is out of the office when he doesn’t want to take calls. However my son received a message today to tell him that they are looking at his decision and he will receive this decision in the post soon. I had to ring them to get the jist of the text because my son deleted it and forgot what it said, as I say it’s been a difficult experience. I just hope that the revised assessment is positive for him.

I am pleased to say that on the 26th July we finally received my sons PIP award and he has been awarded both care and mobility components and I am highly delighted and so is he. Thank goodness this whole process is now over and he can now get on with living his life and know he has some financial security. It has been a long and painful process and I do not at all envy anyone who has to go through it at all.



Whilst I have been trawling through the web site and googling all manner of things associated with PIP, I have found loads of information and bad press about this benefit.  I am very glad that my experience is universal and it’s not just me! The following is a piece that I have copied from the site #PIPFightback and it is very interesting so I am including this on my post –

Personal Independence Payment (PIP) is the replacement for Disability Living Allowance (DLA).

Whilst DLA worked to provide support for the extra costs of being disabled, and the system worked well, the whole PIP system is rotten to the core.

The whole purpose of making the change from DLA to PIP is to remove people’s entitlements to the vital support which DLA provided to help enable disabled people to live a life on more even terms with non disabled people.

With the PIP assessment regime now in place, thousands of people have already lost out and reports of the shoddy nature of the assessments are growing every week. Whilst the success rate at tribunal is high, it is taking up to 6 months or longer for cases to be heard – leaving disabled people struggling

Atos and Capita are making a killing from conducting sham PIP assessments which are seeing thousands of legitimate claimants having their benefits refused, their incomes slashed and their motability cars removed.

 I also found information from the DWP site and found a very interesting review that is taking place right now it is called the Second Independent Review of the PIP Payment assessment and they are calling for evidence from carers and claimants, they state –

This call for evidence relates to the second Independent Review of the Personal Independence Payment (PIP) assessment. It seeks information about how the PIP assessment is working. It focuses in particular on the use of further evidence in the claim process, data sharing and the claimant experience.

Individuals and organisations are invited to submit evidence to help inform the review by answering the following questions. Where we use the word “condition” in these questions we mean disabilities, health conditions and impairments. We use “condition” for short.

Your responses can only be taken into account if you press submit at the end of the form. Please ensure your response reaches us by 5pm on 16 September 2016.

I have got the following link for anyone to click on if they would like to include their experiences and send them in, its worth a try anyway!

Call for Evidence Response Form






poster-friggin-kidding-me-medThis is one of those stories you absolutely hate telling because you are so tired of even thinking about it, never mind relating it one more time! But, I feel it’s a story that needs telling because of the simple reason that, it was a request for something so simple, that became so impossibly complicated. UNBELIEVABLY so! All I wanted was a toilet downstairs but you would think I was asking for a pot of gold, or a massive  building extension by the time the surveyors arrived. When you are disabled and need this sort of help for this sort of thing, well pleazzzzzzzzzz we do need some dignity. You don’t want to feel as if you are begging for something as basic as this, well do you? Well this is how the story goes …………………


In the section, living with COPD (see Making Life Easier With COPD ), I explain how you can make your life137a9247ffabaa938030fcb40588ce02 easier with this illness, once you have come to terms with the diagnosis. I decided, that there was no point worrying about whether I will have enough breath to get up the stairs fast enough to get to the loo. I’d gone through this for almost 3 years, 18 months ago I decided to stop messing about and put in a request for a downstairs loo from the accessible homes team, through Kirklees Metropolitan Council. But this has been easier said than done, what a carry on I have had trying to obtain this toilet it’s been like getting blood out of a stone!

Firstly the nurse who works for the team came out on a house visit, exclaimed how much weight I had put on (because of those steroids) and how much worse I was than the last time she saw me, which was great, of her, thanks a bunch I thought and then told me, I would have to have a stair lift!

This is when knowledge about this illness really shows people up! Going up and down thebabe2 stairs is great exercise and something we have to keep doing in order to stop the advancement of this disease. Being able to do it quick enough is another story. I explained this to her, which caused me a certain amount of embarrassment as you can imagine. However, unbelievably, it fell on deaf ears and my request was refused AT FIRST! I appealed the decision and after countless embarrassing emails in which I had to yet again explain my personal needs over and over and another visit by a much nicer nurse and another visit from the same nice nurse and council planner, I was granted one of these holy of holy’s, a ‘downstairs loo!’ Have I got it yet NO!!! And another winter lies ahead. Now winter is over and I managed ‘just’ without one, but the summer is on its way now and YES, I still haven’t got mine fitted!

For more than a year we have been at a stalemate as to where to place this toilet and when that was solved it was an argument about where to put the door! I am so fed up of the whole thing now and my local member of parliament is trying to help with the situation. Firstly, the council wanted to place the toilet in my living room! Unbelievable, I dont know anyone who has a downstairs toilet in their living room. Then, they decided that the old pantry in the property was probably the best place as it already has a water supply and is directly under the upstairs toilet and right next to the sewage pipe. Wow, what a decision, this is so hard! BUT wait for it, the original doorway cannot be used that is next to the back door in a vestibule, because they want to put a new door next to my cooker in the kitchen!

Great, we will now have four doors in a small 10ft by 10ft kitchen! All more money and inconvenience. So, I am now in talks with the chief surveyor in the department trying to see if they can use the original doorway in the vestibule to save money and space. It does seem the most practical alternative but the practical alternative does not ever seem to be the right thing when dealing with the council.


The talks are now over and I have been forced to agree to the toilet door going next to the cooker so, where am I going to put my pans when I take them off the cooker. It’s hard enough as it is when you can only stand for a minute and a half without getting out of breath (I am working on that one tho). So I am getting my toilet after all but have had to make this compromise! I am going to have a lot of trouble fitting things in but I will get on to Kirklees Housing and get them to look at my kitchen they might be able to come up with some ideas as it will no longer satisfy the  ‘The Decent Home Standards’, the kitchen will no longer have adequate space and layout.

And here is a nice little son to remind you to ask for help when you feel as if you are in as hole, he always helps me!


crazy-little-thing-called-moneyMONEY WHAT AM I ENTITLED TO?

Further more detailed advice can be found by clicking the following links which are BLF and Benefits and Work both of these organisations have phone help lines which is very useful.

This is a basic guide to benefits for people living with a lung condition in England, Scotland and Wales. It was updated in February 2015

The Welfare Reform Act 2012 changed many benefits from April 2013. This guide contains an outline of –

The benefits that you may be entitled to if you:
• have care and/or mobility needs because of your lung condition;
• cannot work due to your lung condition;
• are thinking of giving up work because of your lung condition; or
• are caring for someone with a lung condition.
Each of the benefits listed below have different qualifying rules and conditions and can be divided into two main groups:
Means-tested or non-means-tested – if a benefit is means-tested it will take into account any other benefits or income you have.
Contributory or non-contributory – to qualify for some benefits you need to have paid a certain amount of National Insurance contributions.

Care and Mobility

Personal Independence payment (PIP)  PIP replaced Disability Living Allowance (DLA) for adults aged 16 to 64 who have difficulties or needs
with aspects of their daily life. It is non-means-tested and non contributory, and can be paid whether you are working or not. Like DLA, PIP has two components which are now called Daily Living Activities and Mobility Activities. If you are eligible you can be paid for either components or just one. There are two rates, standard and enhanced, and you will be assessed on a points system to decide which rate you qualify for. To qualify for the standard rate you need eight points, and for the enhanced rate you need 12 points. To qualify for PIP you must have had the difficulties or needs for three months before you can claim and must be likely to continue to have them for the next nine months.

The process for reassessing current DLA claimants will begin in October 2013 and should be completed by 2017. If you reached the age of 65 by 8 April 2013 your DLA claim can continue and you should not be reassessed for PIP.

Disability Living Allowance (DLA) This is only available if you are claiming for a child under the age of 16 and satisfy the care and/or mobility criteria. You will need to show that your child has significantly more care needs than a child of the same age without any health problems. DLA has two components: a care element and a mobility element. To qualify for the mobility component your child must be at least three years of age.

I find the above a bit confusing so if you need any help with any of these rules and regulations you can receive it from the British Lung Foundation Helpline on 03000 030 555. Their specialist nurses and advisers are dedicated to answering your questions. OR this is a great site and you can obtain their phone number from the site.

Attendance Allowance
Attendance Allowance (AA) is a non-means-tested and non-contributory benefit paid to people aged 65 years and over who have personal care needs because of their lung condition. AA is paid at one of two rates, higher or lower depending on the level of problems you have. You must have had care needs for at least six months. There is no mobility payment with AA and any difficulties with mobility outside the home will not be
taken into account.

Special rules for terminally ill people
If a person is terminally ill and is not expected to live for longer than six months, under special rules, they can obtain Attendance Allowance or Personal Independence payment immediately. It’s a good idea to discuss with their GP or consultant. The GP or consultant will need to complete a DS1500 medical report form, which asks for information about diagnosis or treatment. The person claiming  should send the DS1500 form to DWP with the claim form for AA. PIP is claimed by phone. A claim can also be made on another person’s behalf by a carer, family member, friend or professional person. The person who is terminally ill doesn’t have to sign the claim form. They will simply be notified that they have been awarded the benefit and payment will be made to them.

Unable to Work
Statutory Sick Pay (SSP)
SSP is paid to employees who are unable to work because of sickness. SSP is paid by your employer for up to a maximum of 28 weeks and can be claimed back from the government by your employer. To be eligible for SSP you must meet certain conditions –
you must be working for your employer under a contract of service;
you must be earning above the earnings threshold, before tax and national insurance; and you must be sick for at least four days in a row.
Once SSP has ended, if you are still too sick to return to work, Employment and Support Allowance (ESA) may be payable (see below)

Employment and Support Allowance (ESA)
Employment and Support Allowance (ESA) can be paid if you are too ill to work. You must go to a Work Capability Assessment while your ESA is being assessed. ESA’s financial support has two elements:
Contributory ESA, which will depend on National Insurance contributions (this may not be necessary in certain circumstances).
Income-Related ESA, which is the means-tested element. It does not depend on National Insurance contributions, but it can depend on how much household income you have. It is intended that this part of ESA will be replaced by Universal Credit. Within the first 13 weeks of your claim for ESA, your work capability should be assessed and you should undergo a work capability assessment. Usually you will have to travel to a centre to be assessed. After this assessment the Department for Work and Pensions (DWP) can place you in one of the following groups:
The work-related activity group, where you will be expected to try to find employment and have regular interviews with an adviser
The support group, where you will not be expected to look for employment as your illness or disability has a severe effect on your ability to work
If the DWP decides you are fit to work straightaway they can advise you to apply for Job Seekers Allowance (JSA). By doing this you have to declare yourself fit for work. It is worth asking to speak to a Disability Employment Adviser at your local Jobcentre for specific guidance on applying for JSA. JSA is broken down into contribution-based and income-based allowance, and like income-based ESA, it is intended that income-based JSA will be replaced by Universal Credit.

The BLF helpline can give you more information, call 03000 030 555.