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Old 22-05-18, 09:01 PM   #2
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
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Default Re: Attention: PIP REPORTS

I did all this with my support worker. She was very thorough and helpful. I have all the paperwork to prove my illness. My neurologist has seen me once since my diagnosis because the NHS kept messing up my appointments by sending me to the wrong hospitals. I am literally stuck in limbo and the only way I see out of this hellhole is to take my own life. This is how it makes me feel. It is destructive in so many ways

for goodness sake do not give up or give in.
I come from an old HD family, I've been a support carer and a sole carer, I'm at risk and I'm about to be dismissed or medically retired from the civil service as i have been off sick with recurrent depression for over a year. I've lost my mum and brother to HD. I have a slow growing cancer and have lost a friend from a vastly more serious form. I've been on the edge myself often. I don't know if i have HD but i have definitely stared into the abyss.
I've been in the DWP for a long time and I've seen all sides of it. I can only re iterate what i said. I've been involved in helping a friend of mine. I'm only saying this because it's a closed site.
Hang in there my dear.

My daughter had three appeals before going to a tribunal and on the panel was a doctor. We had hardly sat down when he told us that she had been awarded the benefit

Why is the HDA not helping sufferers with these situations??,I think they should be there to back HD sufferers the whole way.Invisible disabilities are an absolute nightmare -once a person with HD is past a certain age the condition is only getting worse- degeneration increased cognitive disability ....Contact the HDA and get help advice ...if they cant help you who can,surely if the cause is genuine its their responsibility ,id have thought!

They are a charity and have a hard time fitting everyone in

What's that got to do with it? They should be assisting people,they receive money to do that and this is obviously a matter to be dealt with ,they should draft be providing some form of help,at least compose some helpful ,information pamphlets.

My brother receives PIP, and every year, without fail, receives a 24-page form to complete, basically asking him if he has got better yet! If he didn't have family looking out for him, the forms would be ignored and his benefits would stop. This year I wrote a really stinky letter to them after receiving the form, spelling out exactly what HD is and means, and asking how many vulnerable people are having their benefits taken away because they are too ill to complete these repeated and unnecessary forms. Very surprisingly I received a phone call from one of the managers, who apologised and agreed that it was unacceptable. He has now been put on a ten-year review so we won't receive any more renewal forms. Put everything down in writing and send it to them. The forms are reviewed by pen-pushers who have no medical knowledge. Your letter will go to somebody who may just understand

Hi they do this to my Mum as Well. Every time she gets the forms it really upsets and stresses her out. Do you think if i did the same as you they would change my mum's to a ten year review. I hate hearing my Mum so upset over something like this when she has so much to cope with already

absolutely, give it a go. I did it more out of frustration than anything, didn't expect to hear back. It did take them five weeks to respond, but the result was well worth the wait. You have nothing to lose but 15 minutes of your time and a stamp. Good luck

That's great I will do this. Yes your right there is nothing to loose. I just think it is awful how they treat people. They should have training on these diseases so they at least have some knowledge on it

This is the problem. These people have litte medical training, and are too dumb and ignorant to spare five minutes on a website to learn about HD. To be a medical assessor surely learning about these illnesses is part of their job description. They ought to be the ones being reviewed and scrutinised as clearly they are not trained up enough for their jobs

I am exactly the same as you 0 points!! Waste of ****** time. Don't give up ask for a reconsideration and if you need to tribunal. Most advice I can give you is provide tonnes of proof of condition. Huntingtons nurse is massive help

My friend has just fought a PIP decision all the way it has taken a long time but the judgement yesterday was in her favour and 3 years Ď back payíawarded too.... donít give up, take it all the way....

I had a home visit last year she was here for a half hour and was absolutely lovely there are some decent people doing the assessments too don't be put off

Yes and try and remember its not just about what you can or cant do .you may have good days and bad days but its also how doing things affects you later.
I made a mess of mine i have mobility issues . i was awarded lowest amount for standard living but nothing for mobility .

contact your local citizens advice and they will help you appeal..but it can be a long process
Alison Joy I have early stages of HD and did not get any PIP the woman that assessed me wrote that falls where part of the condition and she witnessed me removing my glasses. I went to the Citzens Advice and they helped me appeal. I am still waiting a court date

If you are not already, you need a referral to a specialist HD service and get them to write. The HDA produce a information book for GPs, they will send your GP one if you ask the head office. Keep a diary or ask someone close to you and take that to the appeal. Seems standard for first claim to fail. Also take the information sheets from HDA to the appeal, as most assessors do not know much about HD.

I took all my documents about HD and how it affects me. I asked the assessor if she would like to see them. She said it wasnt necessary.

Seems she was blocking, so keep up the battle with an appeal, but get help from Citizens Advice or similar. Have you considered writing to your MP, worth the effort.

I will write to my local MP if the continue to be ignorant. Although I really feel like its more hassle than it is worth.

They are trained to assess answers to a certain set of questions, which unfortunately do not suit hd.. contact citizens advice and they will sort it all as they have lots of experience in this

It makes no sense as to how they can make a judgement based on routine generic questions for all other illnesses. Unless the are taking the **** because they know it is a hidden illness and are deliberately giving these questions to us because we wont remember much about it.

Just the way the system is set up unfortunately

The system needs to be reassessed and updated

this exact scenario happens to my Husband. He was diagnosed in 2015 and was given PIP after the diagnosis, then as his condition became more apparent he put him self forward to be assessed for the higher rate.
He also scored 0 on everything and his pip was stopped.
The Scottish Huntingtons Finanial team helped us with an appeal.
If you have access to your HD financial team get them to help with all the paperwork, get your Dr to write a support letter.
We eventually got his PIP back.
My argument was he received PIP when diagnosed.. HD doesnít go away or get better .
So why take it away from him.
If I can help in anyway your welcome to PM me , itís a tough fight but donít give up.
Get as much evidence as you can , you will get it back . Good luck

Thank you. I have plenty of evidence which took with me but when I asked them if they wanted to read through it the assessor said it wasn't necessary. I trusted what she said as she was just doing her job

in my experience when Iím at the assignments itís clear they no nothing about HD, I find it unacceptable so I always speak up for my husband and highlight all his issues but it still goes over their heads. Keep pushing.
I thought about a petition to the government to recognize HD but not sure how to start one

It was my first assessment with them. I assumed they had some knowledge on it. Pretty dumb getting an assessment from someone who is clueless!

This seems to be the same issue all over. How can you assess someone you don't know in an Hr appointment for a illness they know nothing about.

She assessed me in under 10 minutes then sent me home. Completely rude and ignorant of her. I think she cut my assessment short on purpose

yes I find the assessor are ignorant, I myself have had breast cancer and went through a assessment she totally ignored anything I had to say on my abilities and my mental health. so I think they probably have a quota on how many they pass. I have still to meet an assessor who actually talks to your face and not just look at their computer. we are sadly just a number to them

This is why we have to fight for our right to get the best treatment possible for us.

My sister as had hers stopped to as she isn't showing signs of the illness. Complete and utter bs I seen her last week first time in a year and I can see it and these pip people should be sacked and give the assessment contract to professional people that know there stuff

Please write to local mp without complaints nothing will be done

I dont understand how they dont thoroughly assess the people they hire before taking them on such a big responsibility. I think we should all rally together and make a huge complaint to the press about this seeing as we are all being messed about by it. This condition should be given special priorities!


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