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…..no 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…..how 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……