Drama with PIP

[Mrs. Taff]

I applied for PIP with the help of the benefits advisor at the hospice my palliative care nurse works from.

I had a virtual assessment over video link, during which my hubby translated for me as the assessor could not understand my poor speech. I got tired and emotional during the assessment as I found it quite distressing talking about what I can’t do; I prefer to focus on the positives. I also was unable to do any of the standing exercises they asked me to do, as I was so worn out and, despite still being able to walk, I’m somewhat unsteady and it’s tiring.

We then waited 6 weeks for an answer. When it came back it was a work of fiction! It was as if the assessment hadn’t even happened and they just made up a set of scores. The best one was scoring zero for communication, with the explanation of no issues with expressing or understanding verbally. My most obvious symptom is my slurred speech and how can they score it that way if the assessor could not understand me? Most scores were wrong.

I was awarded enhanced daily living but did not qualify for any mobility. How is that even possible? One completely contradicts the other!

I need enhanced mobility to qualify for the motability scheme as I’ve had a driving mobility assessment and I need an adapted car. I said this during the PIP assessment but no mention was made of it.

Suffice to say, we’re appealing. We brought it up at MND clinic on Friday and the consultant is writing a letter to support our appeal.

I have seen that many of you have had DS1500 which would have removed the need for this traumatic process but my consultant won’t support/sign a DS1500, hence the PIP route.

Sorry for long winded post but really needed a whinge.

Love to you all,
Pauline xx

[Arcadian]

Empathetic support from here, awaiting my assessment appointment (and no DS1500).

[Derbyram21]

This is ridiculous surely the Association should get involved and make it unfortunately a DX1500 as standard. I know this sounds harsh especially when people have to come to terms with this devastating news 😔 but it would be one less thing to worry about.

[Artie]

Mrs. Taff I’m so sorry to hear about your PIP application difficulties. I’m sure I’ve read about other people whose responses to the PIP questions have been misrepresented. It’s awful. Did your consultant say why they wouldn’t give you the DS1500?

[TinyLady]

Mrs. Taff - so sorry to hear this. My original application for PIP was a disaster (pre diagnosis and when I was considerably more capable than now) and I scored very little. Once diagnosed about 8 months later a friend phoned PIP for me to update them.... they told me to get my GP to send them a DS1500 and that sorted it all out.

Fortunately the day I asked my GP for the DS1500 my neurologist had just phoned him to discuss me and in those early days it felt like things were going well. I got full PIP once they received the DS1500.

Your GP might do a DS1500 for you?

[Claireflo]

Sorry to hear the outcome of the assessment was so inaccurate. Did they record the assessment? If so it may help with your appeal if you can request a copy? It is a difficult process to ho through and your positivity has shone through since you joined the forum so don't let them get you down, get your appeal in and 🤞 you get the right result x

[Madge]

When I first applied for PiP I was rejected and I appealed and my consultant got involved. I now receive PiP. I have recently had to reapply as I have to reapply after 3 years. It will be interesting to see the outcome. I hope I don’t have to fight for this again.

[SAMMY88]

I did the pip myself, took 3 months. I got the basic rate. Now using it to save for a electric wheelchair.

[Deb]

I applied for PIP before I had a definite MND diagnosis. My mobility was the first thing to be affected and by the time I had the assessment I was struggling to walk with sticks and using a wheelchair for any distance. I was refused PIP because they said I was amongst other things ... cheerful, made eye contact and could cross my legs!!. I definitely couldn't and I don't recall being overly cheerful. I lost the appeal and was so cross I took them to court. I didn't have to attend but there was a rather large book to fill in. I won and was awarded the higher rate.

On diagnosis I was given a DS 1500 .. I really don't understand why everyone isn't. After 3 years I rang to renew it and was told I needed another doctors note, no problem but really ? They also asked me how far I could walk. I just said nope still can't.

Because I am unable to work I also get ESA but I think that depends on NI contributions. I spoke to a very helpful benefits advisor at the MNDA. Xx

[Mrs. Taff]

Empathetic support from here, awaiting my assessment appointment (and no DS1500).

Sorry you’re going through this stressful process too Dan. Hope it all works out well for you xx

[Mrs. Taff]

This is ridiculous surely the Association should get involved and make it unfortunately a DX1500 as standard. I know this sounds harsh especially when people have to come to terms with this devastating news 😔 but it would be one less thing to worry about.

I know! It would be great if that could happen, but I guess the powers that be could argue that if you allow it as standard for one life limiting disease, you would have to for all, and that would be massively expensive to the government and, ultimately taxpayers would end up footing the bill… just throwing that out there…

[Mrs. Taff]

Mrs. Taff I’m so sorry to hear about your PIP application difficulties. I’m sure I’ve read about other people whose responses to the PIP questions have been misrepresented. It’s awful. Did your consultant say why they wouldn’t give you the DS1500?

Thanks for your support and empathy.

My consultant doesn’t like to support the DS1500 for those he does not consider end of life because by stating someone is terminal impacts upon other things, such as it can limit travel as you can’t get insurance if you have a terminal diagnosis, and so forth. He is involved in the SMART trial and he believes there will be a cure in future, we just don’t have it yet. I do respect where he is coming from and wonder whether having a DS1500 would mean that I’d have to declare I have a terminal diagnosis…

[Mrs. Taff]

Your GP might do a DS1500 for you?

Sorry your initial PIP application was a disaster but glad you have it sorted now.

I hadn’t thought of asking my GP for a DS1500, although I don’t hold out much hope, they can’t even get my repeat prescription right even though it’s on a shared protocol… our GP service is quite shockingly bad unfortunately ☹️

[Mrs. Taff]

Sorry to hear the outcome of the assessment was so inaccurate. Did they record the assessment? If so it may help with your appeal if you can request a copy? It is a difficult process to ho through and your positivity has shone through since you joined the forum so don't let them get you down, get your appeal in and 🤞 you get the right result x

Thanks for your support and kindness Claireflo xx

Unfortunately for some bizarre reason video and in-person assessments are not recorded but phone assessments are! Probably something to do with GDPR… so it’s just our word against the assessor. We’ll see how the appeal goes. We’re trying to keep positive about it 😁

[Mrs. Taff]

When I first applied for PiP I was rejected and I appealed and my consultant got involved. I now receive PiP. I have recently had to reapply as I have to reapply after 3 years. It will be interesting to see the outcome. I hope I don’t have to fight for this again.

Fingers crossed 🤞 we’ll get a similar outcome. Glad you get it now, best of luck with reapplying 🍀xx