New Powerchair on the way

[Silvergilt]

Had to post this up as it’s been a rough winter and this is one less worry. As you might recall I gave up on DLA/PIP last year and had to give my powerchair back to Motability. I tried to just carry on and hobble around without but I had one terrible flare (we had a burglary and the stress did a number on me). I saw my GP and literally couldn’t walk out - nearly collapsed and so they had to get a wheelchair to wheel me out! I’d had enough of this nonsense and I searched for some options and found a charity that fundraisers for chairs. It’s been a long, frustrating slog and I almost gave up. Especially when the OT to assess me ( pic is me trying out a chair- it moves like a dream) She suggested I should be using the chair indoors and her recommendations made it clear any old chair wasn’t going to work. I guess I’ve been telling myself all this time that I’m ‘fine’ and didn’t want to make a fuss when what I’ve really been in is denial....anyway after sitting on tenterhooks for nearly five months, I got a letter saying the fundraiser is approved! It will still be a while before I get the chair depending on how long it takes to raise funds but I’m so happy - and emotionally drained.

On the one hand, yay, I’ve managed to secure a blue badge and powerchair funding with support from my GP. On the other hand....for that to have happened I am clearly not doing as well as I’ve thought. Yay-Boo effect again. But I have pain medication now without anyone batting an eyelash, a coil fitted which is helping the chronic anaemia somewhat, hydrotherapy for a year and a physio class I’ve been referred to try. Things are happening very quickly and, even if I am not in a great place, maybe I can make the best of it now I’m getting lots of support.

So apologies all round that I haven’t been about. This winter was rough, but spring is coming and I have gardening to do! I wish you all joy.

[GillyGangGong]

I would get a claim for pip back in as you clearly are entitled to it it will help you now have evidence of support from the charity. Please don't give up fighting for what your entitled to! glad things are slowly getting better for you xx

[Maureenpearl]

Congrats on getting the funding for the power chair. Yes you should reapply for PIP and get the OT, GP and Physiotherapist to write supporting letters as to how your condition affects you and why they are involved with you.

Please also say exactly how your condition affects you on your worst day.

I am just waiting for the PIP claim forms and I'm praying I will be awarded PIP. I don't have anyone one involved in my care like you only my GP and Consultants.

All the best, hope you get the rest of the money or PIP quickly so you can move on in the seasons of your life. xx

[Sheilainacton]

Surely if you need the chair & have a blue badge you should be entitled to PIP? Can't you apply again? Appeal? I know it's terribly stressful. Best wishes s

[Silvergilt in reply to Sheilainacton]

You would think so, wouldn’t you? However I’ve had a fair bit of experience with the PIP/DWP and I could literally be waiting for an organ transplant and on dialysis (as one of my clients I was advocating for) and still get 0 points. PIP is a cost-cutting exercise and it is very rare to get an award without a lengthy appeals process. Most people don’t have the energy or will to fight it - a few of our clients took their own lives rather than suffer slowly and fall into homelessness and starvation. The system is awful.

I have a supportive GP and care team but the DWP admits they don’t contact care teams and don’t even read letter evidence because ‘they could be faked’. I am already aware the report between my assessment and what I hear from the DWP will heavily edit out anything I’ve told them. I’m recording the assessment in preparation for tribunal and I am not counting on any funds for a year, or however long tribunal will take. All I know is I refuse to be stuck in my house while they dither, hence going to the charity. I can’t let my independence hinge on a corrupt system.

So while I appreciate everyone’s encouragement, let me assure you there’s a very real reason I didn’t go the PIP route. It’s not something I want to do. I’m not looking forward to the strain on my mental health or the stress. So having a chair takes a lot of that pressure off.

[Sheilainacton]

Well fingers crossed you get your chair asap. Also all the best with the tribunal- do persevere- the majority of cases win- I did after a long wait- as you say the whole system is geared to make you give up- in the end whilst waiting for my ESA hearing they eventually sent a letter & said they'd reviewed my case & found in my favour. With DLA it went to a tribunal but on the morning of the tribunal (pm appointment) I got a call from the court & they said the judge had read my case & found in my favour & I didn't have to attend! So I do think judges actually read the evidence - well some of them. Good luck xx

[Maureenpearl]

My son is aged 30 and is diagnosed with Symatic Pragmatic Disorder which comes under the Autistic Spectrum and he was getting DLA but last September he had to apply for PIP.

My husband and I filled in the application form and I got the social worker's report, an agency who accompany him to a night club once a month report and a special needs club's report.

I didn't think he would receive the PIP but the reports highlighted the reason for the help he is given.

He had to go to a face to face assessment which I though he would fail because he does not look ill or disabled in any way. I went with him and he gave permission for me to answer questions that he couldn't.

The receptionist was super nice and the nurse was very professional but nice so I was thinking we've blown it.

We didn't have to wait long to get the reply between 2-3 weeks. He was awarded the PIP so Please Silvergilt do apply again and submit reports from your OT and others who is involved with your care.

I am waiting for the forms for PIP which should arrive any day now.

God bless.

Maureen x🙏🏽

[Silvergilt]

Thanks to everyone for your encouragement and support - the story on PIP so far is; they tried it on (quelle surprise). At first, my home assessment was the following week of them receiving my application - a very quick thing as when I was advocating it would sometimes take months the backlog was so large. So I got my recording equipment ready, only to get a phone call saying the appointment was cancelled and it was going to be the week after - which wasn't going to work for me as my partner was off on a business trip. So, it was rescheduled for the 19th.

I then got another call a few days later and was told the appointment needed to be cancelled AGAIN and they'd do another appointment at the end of the month. At this point I was pretty fed up, as I've spent the entire month stressed out about the assessment, only to have it delayed over and over again. I filed a complaint and CC'ed my MP into it, then told the assessment company it really just needed to contact my specialists (which they tend to notoriously refuse to do more often than not) and not keep stressing me out any further.

So my GP called me and said she'd received a call from ATOS and she wanted to discuss with me what I felt comfortable with her sharing - and I explained I thought they were considering a paper-based assessment instead (which I infinitely preferred to having my house invaded by someone reading from a computer screen). So the GP called the ATOS assessor and then called me back and said it's very likely I'm scoring highly across the board. The report is being submitted to the DWP for a decision.

So that's a plus - and while it could all still go pearshaped at the DWP, maybe all this nightmare is over for a bit. If it does come back with enhanced rate in care and mobility (as my GP seems to think) I will be calling the charity back and telling them to forward money over to someone else, and go through Motability for a chair instead. So we will see how it goes.