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Old 22-05-18, 08:57 PM   #1
Allan
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,149
Default Attention: PIP REPORTS

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THIS MESSAGE IS FOR THE ATTENTION OF THE HDA MANAGEMENT TEAM.

THERE IS A 24 HOUR LONG THREAD ON THE HUNTINGTON'S DISEASE UK FACEBOOK GROUP FROM PEOPLE WHO ARE DEEPLY CONCERNED ABOUT THE DWP'S PROVISION OF PIP ASSESSMENTS VIA ATOS, CAPITA AND THE OTHER ONE ...

FIRST POST

I applied for PIP a while back and had an assessment with them a week and a half ago. I got their review. They scored me 0 on everything. Then went on to explain that they can't see anything wrong with me after assessing me for no more than 10 minutes before making their decision. I am fuming. They don't see me having accidents everyday because I am so absent minded. They don't see my horrible mood swings because things become too much for me. They dont see how shaky and jerky I get when my body has a spasm. They don't see me seeming like a drunken idiot when really my brain is going a zillion times an hour and struggles to communicate because everything tries to come out at once. They don't see my friends having to chaperone me places because they know how absent minded I am and worry about my safety. They don't see HD. I am utterly sickened by this

Get your hda advisor to appeal for you. Did your consultant provide a letter ?

Get in touch with the HDA,they should be able to help you

I am trying to get all the help I can. I understand some of this can take a while so I am trying to be patient but it is so frustrating. I have a support worker who is helping me with all the important stuff that I am struggling with but she isn't a qualified HD support worker. Just a general one. She is helping me with getting help from the HDA and mental health therapy. I have been feeling so low because of this. It has been making me very suicidal because of what it is doing to me. I just want it all to end. I have had enough

my husband scored 4 points first time with help from citizens advice he gained maximum award second time. Your doctor should be able to give you something for your suicidal tendency. My husband was failed by the system. He did commit suicide please if you thinking about harming yourself go straight to a & e no messing.

you need to see a psychiatrist I am really concerned for you. You know part of the condition of HD is not recognising your illness if your suicidal you need immediate help my husband's doctor was useless to. Can a administrator please find help for C

I have been referred for psychotherapy and I am waiting for them to call me in for a chat. But the system is slow because of the long waiting list. I have been left to deal with this on my own hence why I went to the council for help. I am finding taking my life more and more tempting as I know how scary this illness makes me. I need help with the mood swings more than anything as they are affecting me and my friends mostly

They did exactly the same thing with my dad! You have to fight so hard for it, itís such a long slog! A year we fought to get it for my dad! Go straight to your local news/newspaper youíll soon get results

If my key worker can't get them to change their opinion then I may have to go down this route but I don't want that as I really don't want the publicity. I prefer to deal with things without kicking up a fuss if I can avoid it. Thank you for the tip though

Aww I completely understand hun! HDA will help, and any professor/doctors notes you can receive and send straight off would really help too. If you need any other help/advice Iím always here hun, we went through a horrendous time with him so Iím always here to help

Do I have to bug my doctor for this as well? The doc who I used to see about this left the practise and I ended up with one who is ignorant and thinks I am making it all up even though they have my test results. I hate going to him for anything when something is wrong with me. I know I have the right to change my doctor but there is no other in my surgery and it is nigh on impossible to enrol at a different surgery in my area. Thank you, I appreciate your kindness

Oh bless you sweetheart, your doctor sounds like an ********! Unfortunately yes you will. where weíre you given your results if you donít mind me asking? Any doctor who does this should be sacked! Itís absolutely diabolical! No wonder your having such problems if your doctor isnít backing you! Bless your heart. oh not a problem sweet, I know how hard it can be. It can be very scary! Especially considering your the one suffering

Unfortunately in my borough most of the quacks here are useless. I think most doctors go into this profession for the money and power, not to help people. I am trying to move to a better area so I will work on getting myself enrolled in a better surgery.

Appeal it over and over until they give you it. My father inlaw has bipolar and aggressive copd and physically and mentally unfit and he was given a 0 and refused it and he fought and appealed and now he's on high rate and got fully backdated. My mother inlaw in also disabled with many illnesses and conditions and she's been though it all aswell

It's stupid. They have to be reassessed every year like there suddenly going to get better. My mum has HD and I remember when I was younger she has issues with benefits but I presume she's on everything now but my nanna has power of attorney so she con..See more

That is so awful. It doesn't help that until recently it got publicised yet they still understand nothing about it. It seems like they punish those who are really sick and can't work as if it is their fault they are in that position. And the ones who fake and milk it get away with it. They don't want to pay for the real sick ones. It

This happened to my Mum when she first applied. You have the right to appeal please do so as it does work. I do feel for you, it is so unfair how people are treated just because they do not understand this horrible disease. This is why awareness is so important. I hope you get the outcome you need. Good luck

Thank you. I am going to fight so hard for this. I feel like I am not worthy enough to claim it but that's just how my brain likes to play games with me. I have some good support workers helping me through this thankfully

Don't ever feel worthless. We all need a helping hand from time to time. This disease robs people of so much and having to stress over things like this is not right. It's awful how they treat people. A ten minute assessment does not give a true reflection on what you face day in day out. I'm glad you have support and wish you every luck.

I appreciate that. I agree they did not make a fair assessment on me. I am losing the will to carry on though. Especially when I get knock backs like this

I understand completely why you would feel like that. Nobody should have the right to make another person feel like that though. Keep positive thoughts, make sure you appeal and I'm sure you will get the right outcome. You don't realise how strong you are even just coping with HD. Remember you are a HD warrior

The first question I always ask the assessors on my husbands behalf is " do you have any knowledge or experience of HD?"
Also I am his official appointee with the DWP and have power of attorney for his health and finances. Do you have someone you trust that could take on these roles and attend interviews with you. Also do get your HDSA to help you filling in the forms. It's a daunting task but you must give answers depicting you at your worst...which is a horrible thing to have to do because it makes you stare HD in the face, an awful experience for the carer too.
My sister in law keeps getting turned down for ESA because she just wants to prove to everyone how " well" she is. It's an absolute minefield , keep going though, and good luck .

See this is where I am going wrong. My brain doesn't think to ask those kind of questions. It doesn't automatically make me think about these things. My brain is slowing me down and half of the time my head is in the clouds so it is really hard for me to pay attention. It is embarrassing as I have to explain to everybody all the time as to why I can't take in what they say to me, or repeat it back to them. I took a good friend with me who has known me for 10 years and he sees what it does to me. He has seen me getting worse gradually. I dont want my friend to be my appointee though. My support worker couldn't make it and I felt really anxious about going there alone. My support worker has been filling out most of the forms for me as I have no clue as I am awful at filling forms in.

I work for the DWP and have done for nigh n 23 years. Don't take it personally. This is a national thing and i can assure you that hundreds of people are in the same boat. It is a government policy that the DWP have to apply but it is highly contraversial. So DO NOT take it personally.
Trust me. Appeal. Most appeals succeed.
Get someone to download the assessment criteria table. It will tell you what points are available for each require ment. Then you need to write down the problems you have that fit into each category. That needs to be put in a letter and covering letters from doctors of a higher level than a GP are always useful. Initially you request a mandatory reconsideration then you got to the appeal stage which is long. I wish you well but please please calm down and try not to worry as believe lots of people have had problems with PIP. The Parkinson's Disease society have complained about it.

so refreshing to hear from someone on the other side of the fence giving positive information. Thank you

CONTINUED BELOW ...

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