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Old 22-05-18, 08:57 PM   #1
Allan
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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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Old 22-05-18, 09:01 PM   #2
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Default Re: Attention: PIP REPORTS

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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!

CONTINUED BELOW ...

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Old 22-05-18, 09:04 PM   #3
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Default Re: Attention: PIP REPORTS

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very good idea as I know that rt news have been reporting the tories have failed the disabled people of all illnesses and they will show this sort of thing. I say they should have specialist in the illnesses that are being assessed as this is wrong from a country for all. Yes this condition should be in the top of helping people live a life that they can enjoy for memories not being put down.

Nothing will change if we dont pull them up on it.

will do some research going back to the 90s when the elite said disabled rights came in and research capita as I know they do assessments by numbers. Like you said we need a group starting

will have a look as if there are groups for other conditions then we could try and bring it all together and have one big voice for all. I was lucky to not be passed HD but have a lot off problems and got bad dna makeup as narcolepsy with cataplepsy and it is where the antibodies are eating at the brain destroying t genes but its not a big thing according to the elite and other conditions to do with the cns and brain so am thinking is this contacted to HD in some form of way. Its the fact that people will not listen to us and know with fibro which I also have as been discussed in parliament is hopefully the path for the HD soldiers

It does sound like HD. Have you been tested? Its best to get this checked asap. I hope you get to the bottom of it. We are all here for you whatever the outcome

That's very kind of you thank you

thank you. Yes I got tested 22 years ago and got the all clear but with my conditions it's very similar to my dad in his early days of HD and it does cross my mind as have been told I will develop parkinsons illness later on and that is strange as isn't parkinsons the sister of HD. Plus owe this to my dad and sister too help others that are unfortunate to dealt this hand of life.

I would advise a second opinion. The genetics testing is so much better than it was 20 years ago. They may have missed it or it didnt show then. It's better to know what it is so you can prepare for it

I have just had a chat and they say the same thing. So I will see my sleep doctor tomorrow and get in touch with genetics as it is best to no for sure and thank you for pointing it out. Much respect

just having this chat as made today feel great and nice to see true lovely people about these days

There are too many bad eggs out there. I am glad to put a little sunshine in your day

I wish you and your family all the best. I hope your daughter's pregnancy goes well too

thank you again so many bad eggs know days its a good thing to speak to one another

Please ask for a review of their decisipn and then appeal

I read research papers on HD and it's often quoted as saying HD is ALS, and Parkinson's and all the neurological disorders put together.
I have seen recently thatThe Pope has shown interest in the illness. If it gets to the Vatican, why are the government pretending it doesn't exist.

I wouldnt be surprised if the government are deliberately trying to ignore it because the majority of us with this illness will have to be provided for by them for the rest of our lives. They will do anything to stop the sick from being taken care of because they dont want to lose money. They cant make money out of us so they punish us for it. They hide so much of the truth about anything from us but a lot of us are waking up to this now. Time to fight back and fight hard

Action is required!

I agree it is all the neurological conditions combined, even more reason to get this illness taken seriously.

Perhaps contact Dr Rickard's (neuropsychiatrist) at the Barbary Birmingham,see if he can help!

Thanks I will give it a shot. It wont hurt anyone to ask him but it will if its still ignored

Pip is for specific things. I scored low on mobility because my problems donít meet pip criteria. Have a look at what they specifically require to see how you think you should of scored & then appeal.

I think you need to stress the cognitive and organisational problems for example you might be able to walk to the shop but couldnít do it with out support to get dressed have money cross the street safely etc etc you have to really put worse case scenario and highlight all the range of difficulties xxx

I think when all the difficulties are listed ,on their own they sound a little trivial,but collectively & realistically they are of the utmost factual importance.

Hd is mentioned in this article: Benefits re-tests axed for chronically ill

I did offer them a full description on paper of how I am affected by HD but they said they didnt need to see it. It gives a much better perspective than to how I could describe it as it is so complicated and there is a lot to take in. It was really ignorant and unproffesional of the assessor to do that. She just took a glance at me and assumed I am faking it even though I have test results and neurology reports to prove it.

Itís insane thereís someone called MW who dies a video blog and he was rejected they went onto the radio to talk about it . I think the Huntingtonís disease Association should be keep a record of how many turned down how May won appeal etc .

People need to speak up more to the association about this or they wont realise this is a huge problem. It's down to them to make a difference but the more who speak up the better chance we have of sorting this mess out

We did a freedom on information request re ESA applications perhaps itís worth doing that again and see how many people declined ?

I for one agree-,If the Association is genuinely there to assist sufferers then they aught to be willing to come on board with the needs of those who are being put through hell and traumatised,HD sufferers don't all have the ability to speak up for themselves!, nor do they all have the support required to get the message across to those (often unqualified and inexperienced) who make decisions about the HD sufferers disabilities which are often partly,or wholly Invisible.

After reading some of your stories regarding HD and benefits, and myself currently experiencing this, I have noticed that the majority of us with HD get treated rather poorly in the benefits system. I have been discussing going to the press about this with a few people as it is totally unfair how they assess us. I feel we need to rally together and pull them up on this with the backing of news companies and the HDA. If we don't all stand together on this, then nothing will change. The DWP needs a huge wake up call an to update its system making it fairer on us. I don't have a clue where to start on this but I know some of you have had to go through this so any information and assistance with this will be appreciated.

Sadly this is true of a lot of chronic conditions with the benefits system.

Indeed! ..and it is wrong for a society to treat its ill members in such ways.It needs to change.If a person is of a certain age say around 30-35 + and has HD then they should be supported,life is difficult enough for them,the present support /benefits system is one of harassment they should be sued for putting HD patients through an already extremely challenging ,painful and often lonely life!

You hit the nail on the head with that. Sadly by the time it gets taken seriously our minds and bodies deteriorate further and quicker because of the awful treatment they get from the system. We need to put a stop to it now

We are going to have to do this by coming together...Is the HDA are meant to be the primary back up for sufferers is the UK....can someone get the ball rolling ,I'm not the person to do this as I have little to do with them due to some events and misunderstandings ..It happens.

I agree - its not just the HD comunity.
That get treated this way . And like another lady mentioned on another thread. How they reveiw each year too see if you get better. But incurable illneses dont get better .if anything they get worse.
So you need too get allies from other groups then you might get somewhere

In my experience 9 out of 10 need to reapply.
Try to prepare the best you can. Letters from professional bodies and I also wrote a personal reflection of the way things change on a minute to minute basis. I was advised by the HD advisor to use the term brain damage as this is easier for the assessor to understand.

The problem is the majority of people with a disability are under the assumption that they aren't entitled to it so they dont speak up about. If we all gang up on the system then they have to do something about it.

You cant 'Gang up on the system-you need intelligent help to present your good case..*get HDA on board,(for a good start) to back this move and bring change! If you have the mutant gene and the illness is manifesting then- HD patients should be added t...See more

I'll back you up hun.. start a government petition and write to the local mp. This horrible desease just because it's hidden don't mean people ain't suffering.

That's great.The best way to deal with this is surely to get HDA on board.Is there someone out there willing to connect with them in order to firmly establish that HD patients do not fall into 'Norm' categories- Its an exceptional disease which calls for sensitivity,understanding and an exceptional approach.

I applied this year and was successful. It was very hard for me to complete the form but I was honest how this condition affects me in day to day living emotionally and physically. I had a home assessment which took over an hour. I am one of the fortunate ones.


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Old 24-05-18, 05:11 PM   #4
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Default Re: Attention: PIP REPORTS

Allan, thank you for bringing these posts to our attention. It is invaluable to get these examples of people's experiences and we will follow this up with the DWP. In the meantime if people have concerns or questions please don't hesitate to contact your local advisers. Details can be found on our website
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