The Trauma of the PIP process once more……..

I’m sat here waiting…..waiting for 11am to arrive….sat with dread in the pit of my stomach yet trying to muster a fight…..

It goes against all I stand for to concentrate on the negative, but when the assessor arrives, that’s what I have to do….

The first time I applied for Personal Indepence Payment, some 5 years ago, I had someone who understood. I was naïve, it was a totally alien experience. But the person listened. I showed her the maps and photos it had taken me to get to the meeting. She took note of the enormous effort I’d gone to and I was assessed as in need of PIP to remain independent.

But the reassessment 18 months later, was a different experience. It was demoralising, Because of the positive first experience, I went alone once more, but the reaction was so different. I had the payment taken away from me. I appealed and the process that followed was even more shocking. The Appeal deemed “I was getting better’….if only. They said I could do things I clearly couldn’t and quoted my ability to speak in public for the Alzheimer’s Society was one reason it should be taken away.

My MP was asked to support me but he wrote back stating the benefit wasn’t meant for people like me…..😔 Like so many, he looked at the outward facing me and failed to see the inward me, as a person with dementia…

I was so distressed, so demoralised, so depressed at the time back then. The stress it had caused me and my daughters led me to make the decision that I wouldn’t go to Tribunal – probably just what they wanted. But they got their wish, I just couldn’t do it any more.

In my mind the system was broken. As I said in my blog back then:

Feels like I’m being penalised for trying to remain independent and out of the system – maybe I’ll give up everything and become a burden to the state, then I’ll meet their criteria……”

 Well, this time, it’s the principle that’s the reason for me going through this trauma again. The local council have said I should have been entitled to be exempt from Council tax for years, but sadly I need to be in receipt of a benefit to qualify, PIP being one benefit….it seems crazy that I have to apply for one benefit to be entitled to exemption when my GP would happily write a letter.

Anyway back to this time……My daughter had to complete the form as I can no longer write legibly consistently. The whole process of having to think negatively just isn’t normal for me. It’s times like this when I wish I could switch to being a glass half empty person. Just the thinking negatively makes me feel sad. Having to concentrate throughout each question, on what I can’t do…..

 I realise they have to know the extent of the effect of the dementia, but couldn’t they phrase it in a different way? Couldn’t they find out the extent to which you put strategies in place to cope – this would show them the lengths you have to go to simply to survive each day……😔

Gemma sent me each question by email, so it wouldn’t be too overwhelming; I responded and she added bits she thought I’d missed. It felt like it took us weeks. We had to ask for an extension as they give you a deadline.

The first appointment they sent us was the day I was going on my mini adventure so Gemma had to ring and cancel. She said they were unhelpful and unpleasant, after all we’re not suppose to have a life – not that she mentioned where I was heading as they would have looked at it at face value and immediately struck me off! If we’d have cancelled this second time that would have been it – 2 cancellations and out….but luckily we were both free.

So yesterday, Gemma arrived just before 11. I’d already started tidying and then thought, “What am I doing!”. I’ve never been a messy person ever, so they will always see a tidy house no matter how long it is since I noticed it needs tidying. But I hate strangers coming into my house anyway now, I feel vulnerable and suspicious. Today even more so.

We reminded each other to think the opposite to what we normally do…..where Gemma could speak openly for me as that’s what they want….🙈….how I should concentrate on what I can’t do 🤯..

“It’s an invasion of your well being” as Gemma quite rightly said……

Remembering that they were due to appear between 11 and 1….we sat and chatted…..and chatted and sat……1pm arrived and no sign. So Gemma rang, explained that no one had bothered to show up………….she was told the healthcare persons manager would ring her back… clue as to when…….

The warning on their letter clearly shows that if I’d have failed to be there then my claim would have ended……

Seems like one rule for them and one rule for us, sat there getting more anxious by the minute, waiting for them.

To be fair, the manager rang back within 30 minutes and said how the health professional was not available but hadn’t informed anyone… can a ‘caring professional’ do that? AND how can a system not have something in place to check in on these people first thing regarding their workload, especially when it’s a common occurrence as many playmates have spoken of them not turning up….and especially when they’re visiting vulnerable people 🤦‍♀️

If Gemma had been rung in the morning and explained why the appointment had been cancelled, it would have been acceptable …annoying but acceptable. But to have the tension and anxiety building during the 2 hour slot they’d given us, waiting when ‘waiting’ is something I find hard at the best of times….well simply inhumane..

The individual on the phone could not apologise enough and it’s the first time anyone has been decent on the phone, as all the others have been quite rude……

But what about the person before me who they’d been due to visit, are they still sat there waiting with no one to ring for them? and the person after me….what if those people are desperate for the money and have no advocate.

I was lucky, I had Gemma with me to hug when the stress turned to tears – not everyone is as lucky as me.

It just reflects the whole system as totally broken, a sham, not caring……it should be a caring process, about finding out who needs support, not this confrontational system we have right now….it’s inhumane to dump all this on people who are already going through the crap of dementia or any other condition….

The appointment they gave Gemma over the phone is in a months time….a month of more waiting and then another day of stress and anxiety….how can this be seen as a ‘caring’ system……

So sad……


About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

66 thoughts on “The Trauma of the PIP process once more……..

  1. So sorry to hear this Wendy. It is broken system that no one is ready to resource properly. The people at the chalk face get the brunt of it, but a bit of kindness and courtesy goes a long way. Xxx

    Liked by 1 person

  2. I understand your pain & frustration Wendy. I was diagnosed with a type of non cancerous brain tumour/balance issues & provided many pieces of medical evidence before my assessment for benefit. I was found fit for any type of work. It took several appeals & every ounce of energy I had, but I finally won my appeal. The system is flawed & causes real misery for many people. I was at my lowest point ever. The extra fear,confusion & worry are unfair, but you’ll get there in the end. Use any support you can. Thinking positive thoughts for you. xx

    Liked by 2 people

  3. Oh Wendy this is just so dreadful, you and everyone else in this situation deserve so much more, care, compassion, help, consideration in bucket loads and all were lacking. didnt know of your previous experience in this which just makes it even more sad. you go to all that effort to speak for Alzheimers society shame they couldn’t have intervened for you wishing you a fully successful outcome and thank you so much for all you do for those with dementia. you deserve a few medals in my book! sending you very best wishes.

    Liked by 2 people

  4. Oh dear, my dear Wendy, this is so sad. And so unfair! Even as a healthy person I would be down, being confronted with such a behaviour. If they were fair, shouldn’t they be saying: you were there for THEIR deadline, now they lost their right to threaten you any longer, but give you the PIP, as it is your righteous need. I know, that’s not how burocracy works…. anyway, don’t give them the satisfaction of ‘you, giving up’! Thinking of you, Lilli

    Liked by 2 people

  5. Dear Wendy, I feel so sad that someone like you, someone trying their utmost to delay the effects of your condition, should have to go through this awful negative trauma.
    My husband went through the same thing he is Bi-Polar. He won in the end.
    I hope everything goes well at your next appointment. Will be thinking of you.

    Liked by 2 people

  6. This post (and actually your entire blog) should be required reading for leaders and managers of all social support agencies. So sorry that you’ve been put through this inhumane (and I hope you have a new and better MP!)

    Liked by 3 people

  7. I feels angry for you. I understand the stress and negativity of applying for benefits and the process as I’ve been through it many times with both my daughters who have different but complex health issues. You and your daughter may find the Benefits and Work website helpful if you haven’t already found it. Good luck with your rescheduled assessment. My heart literally sinks when a brown envelope comes through our door – it shouldn’t be like this.

    Liked by 2 people

  8. Oh Wendy, I’m so sorry you’ve had to go through this. The powers that be assume that everyone is trying to cheat and abuse the system when it is the actually the process itself that subjects claimants to cheating and abuse.
    I too found the form filling very depressing; I only cope with my MS as well as I do by reminding myself of all the things that I’m still able to do and I try to never focus on what I can’t do. It is counter intuitive for those of us who make the most of what we have to be made to concentrate only on the negative and there appears to be a complete lack of understanding of this at the DWP. The stress and depression it causes is dreadful.
    For my first PIP assessment I had to go to Oxford, some 20 miles away, and we had just arrived in the car park when my phone rang and they told me that the assessor wasn’t available and gave me another appointment. I was fortunate in that following the next appointment I was awarded PIP but only for a few years so I know I’ll have to go through the process again next year. Their refusal to understand progressive conditions is alarming.
    I also tried to claim Employment Support Allowance but the system is such that, despite having made enough National Insurance for a full pension in 2022, I don’t qualify for ESA – I had put myself through all the stress and misery for nothing and it took a long time before I recovered from it.
    I’m very grateful for your posts, they help me enormously.
    Sarah x

    Liked by 1 person

  9. I just wish the people who run these systems could have a day in your head – they’d soon change their attitude. It is cruel and inhumane. I really do hope you succeed when you do eventually have the interview. xxxxx

    Liked by 2 people

  10. I am so sorry to hear of your distress especially when you bring so much comfort and help to others. Please rest assured that we support and appreciate all that you do. Thinking of you.

    Liked by 2 people

  11. This seems to happen often and it’s a disgrace.People with M.S. have lost benefits because they can walk 4 steps!I’m too old to need to be assessed for P.I.P. but,years ago,when claiming benefits I was advised to fill in forms describing your worst scenario.It seems that being positive and doing as much as you can is frowned upon!That’s the end of my rant!!

    Liked by 2 people

  12. I was so upset on your behalf that I had to wait before writing my thoughts. I’m so sorry you have been put through such distress. It’s beyond belief that the enormous effort you put into living your life to the full has been used against you. Can I merely send you love, support & admiration & know that I am shedding tears as I write.

    Liked by 2 people

  13. So sorry to hear of the PIP troubles. It is shocking the lack of communication, waiting and waiting. Knowing that you will have to get on the misery bus and dwell on can’t and not can do. Glad you had someone with you. I truely believe that they do this to wear people down. But PIP is a gateway benefit so people need to press on. Try to put it out of your mind for the next four weeks. If DWP or Crapata or Atos, had to pay for each missed appointment, to the person being assessed they would make sure they turned up, maybe we should call it being santioned for being incompetent. Good luck.

    Liked by 2 people

  14. This is so awful Wendy! Such an uncaring system. Thank goodness you have your girls on your side. I wonder if it might be wise to send a copy of this to your MP now. He or she can surely no longer believe that you shouldn’t be getting the help you need and – are entitled to!

    Liked by 2 people

  15. So sorry to hear this Wendy. I frequently share your frustration. I think many of us have experienced similar in different parts of ‘the system’. I applied for a Blue Badge recently for my husband and was told when I submitted the paperwork that I hadn’t given enough evidence and that I needed an up to date letter of verification from his consultant. Paul hasn’t seen anyone at all since he was diagnosed three years ago. I wanted to scream, and it’s only a Blue Badge!
    The trouble is that none of us really have the time to take on the task of fighting the system, and ensuring that it becomes more humane. I feel so very sorry for anyone whose on benefits and has nothing to fall back on.

    Liked by 2 people

  16. surprised no-one else commented (unless I just can’t see the comments)
    How inhumane …Surely those policy people who set up the system can’t be so insensitive to what it must feel like.
    Best of luck for next time and I’m glad Gemma was with you.

    Liked by 2 people

  17. Hello Wendy….I am fairly new to your blog, but am incenced by reading the ordeal you have to suffer regarding PIP. The people dealing with this should hang their heads in shame… they are an absolute disgrace to the word ‘professional’ Where is the accountabilily? The efficiency? The compassion? I think this case should be taken up by the Daily Mail. They are champions of common sense and of righting the glaring wrongs and injustices in our cynical society. Ask Gemma to write to them and tell the all you have gone through. This needs shouting from the rooftops. An absolute crime against the vulnerable members of our communities. I wish you both strength of purpose. Get her to set up
    an online petition….your blog readers will support you every step of the way. Good luck!

    Liked by 2 people

  18. Oh Wendy, so very sorry to hear this! The waiting is always scary, even if it’s only a few minutes, but to leave you hanging on for over 2 hours and then have to ring up to find out what the heck is going on is just unforgivable.

    I hope you won’t mind me suggesting that you or your daughter contacts Fightback4Justice.

    Somebody from there (they are in Bury, so I was able to visit from Liverpool, but they help via phone or online or via mail too) helped me fill in my request for Tribunal, and someone came to represent me at Tribunal too (costs more, not unreasonable fee plus travel expenses).

    And I got back my High Mobility award, plus went up to High Care (or whatever they call these things now), so have my Motability Car again now.

    Do feel free to give my email address (which I think will be in your wordpress account about comments hopefully) to your daughter if she wants more information.

    I truly believe you should be getting help from PIP. Sending you my very best wishes, and hopes that it all goes OK when you finally get your assessment. Hope you don’t mind if I send you some cyber hugs too, as sounds to me like you need them. (((((Wendy)))))

    Liked by 3 people

    1. Thank you Wendy for your article and Maggie for this link to Fighting Back. I know people with MS and Parkinsons who have been told they’re getting better, which shows an incredible lack of understanding, in fact the whole PIP system seems to show that.

      Liked by 2 people

  19. So sorry you had this experience. It is exactly what you called it, inhumane. Had it happened here in the US, it would have been par for the course. I guess my assumptions about the UK system were too high because of the NHS, which I had a very positive experience with when visiting there years ago. Hope your next go at it connects you with someone caring. Sending positive vibes your way!

    Liked by 2 people

  20. Oh Wendy, I couldn’t agree more. It’s an utterly ghastly process. As you point out and show us with every blog post, the way to cope with any long-term condition is to focus on the positives. The negativity of the PIP assessment is so very depressing and you know it’s going to be a fight all the way every time it comes around. I find it hard to believe that the assessors who conduct interviews have any compassion or medical knowledge. Be strong, and good luck!

    Liked by 2 people

  21. This is just awful, Wendy. I know what you mean about filling in forms that only focus on the negative as I had to do it for my husband’s Attendance Allowance, but at least he got it. To treat you like this is unforgivable and so is your MP’s attitude. I agree that you should try telling the Daily Mail – they have had many successful campaigns. You are so fortunate to have your two daughters to turn to. What about those people who have no-one and do not have the know-how and energy to fight for themselves? Life can be very unfair. Virtual hugs and healing coming your way, Wendy 🥰 🙏🏻 💆🏼‍♀️

    Liked by 2 people

  22. It’s the same old problem with an invisible disease they are so ignorant & don’t seem to even want to understand it. I found my pip assessment so stressful & the hardest part was trying to explain my dementia.
    All the best for next time Wendy.

    Liked by 2 people

  23. Hello Wendy

    I hope your journey home went well.
    My train had only five carriages not nine!
    I had booked a seat but of course the system was down
    It was suggested we wait for the next one but at that time of day
    it would struggles take us all. Fortunately I got a seat but many were standing.

    But on to much more important matters. This experience is truly shocking.

    Once my mother and I waited for someone, who had booked an appointment
    with us. No arrival.
    The time went by my mother got more and more upset and agitated.
    I rang and the ‘professional’ blithely said she wasn’t coming because of the weather!
    Everyone had left the village for work, for school etc with no problems.

    I was furious and told how stressed my mother was with no show. For the rest of the day
    my mother was agitated and worried and she was like this till bedtime.
    I hadn’t thought about this for a long while and jogging my memory you reminded
    me of the few bad apples in the system.

    Better luck next time.


    Sent from my iPad

    Liked by 2 people

  24. Oh so many people backing you and supporting you , it is disgusting in your case the effort You make to put in so much help for others. I also think the Altz society should take up your cause. We had four appointments missed when we tried to get CHC, soooo stressful saying all those things about your other half , that was before Christmas and we still haven’t heard, can only assume we didn’t get it !!!!

    Big hug as always Veronica and Christopher xxxxxx

    Liked by 2 people

  25. Their arrogance and ill mannered approaches are vile and unwarranted on defenceless, poorly people. Only a certain type of person could do the job they do, and we all know what they are!!!!

    We have all had struggles being working class and paid into the system, the same system that supports the Royal Family, the Church of England, MP,s, peers in the house of Lords etc ,etc, [The Lords has just been given rises on their daily expenses by the way!!!] All sitting pretty I think.

    So our aims of financial equality has gone out the window after a lifetime of work, we all have noble ambitions of helping the state by being independent as long as we can, and not burden it with the cost of care homes, but that is thrown back in our faces, and its a total disgrace. A few extra pounds a month makes a massive difference to our state of calm and well being well being, we have a lot to offer within the realms of medical science and research, all on offer, and all for free, and now this is all stripped away with a social means test which is utterly humiliating and terrifyingly litigated and performed by total strangers who are indifferent to our plight. I despair, I really do!!!

    Liked by 1 person

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