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Question about qualifying for PIP

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#1 Thu, 01/05/2014 - 13:31
cityjeff
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Question about qualifying for PIP

I am a new member who stumbled across OUCH 2 days ago on the NHS website. Until then, I hadn't even heard about CH, but after going through your CH checklist  I knew that this is what I suffer from.  (I will take this up with my GP).  I had to give up my career a few years ago and take early retirement (I am now 60) due to suffering from terrible and almost constant headaches which brought me to almost total collapse . I also started to have problems with my walking and balance amongst other things. It turned out that I have a neurological condition called Cervical Myelopathy which has affected my mobility and I was told by a neurologist that the migraine-like headaches were a result of damage to my spinal cord. I was put on neurotryptoline which I was told would help the constant migraine, and that I should take painkillers when it got bad.  Long story short, the neurotryptoline stopped me having a constant aching headache, but I am still left with the terrible chronic nightly suicide headaches which plague my life.  I was discharged by the consultant ages ago as he could do no more, and have been only seeing my GP since then. I take codeine and tramadol but they don’t really help.  Until finding OUCH I felt really isolated and ignored.  I have no help and live alone, and it is so hard to remain upbeat and avoid suicidal thoughts.  I am living on a small monthly pension supplemented by my savings and pension pot – which are both running out.  I tried to get DLA 2 years ago on the grounds of the Myelopathy and severe headaches but was rejected as most days I can walk more than 200 metres, dress, wash and cook for myself.

It looks from reading old postings here that some people do get DLA/PIP for CH, but I don’t see how – the scoring method that they use to assess claimants gives you no points if you can walk more than 200 metres, and can wash dress and cook for yourself.  Is there another assessment method that looks at issues other than physical restrictions?

Sorry for the lengthy post, but this is the first time in years I feel I am talking to people who actually understand how hard my life has become.

Thu, 01/05/2014 - 14:12
Mike
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Hi Jeff, too complicated to answer by email. I assume you are the Jeff from Tomorden.Do you want me to call you to explain about the DLA?

 

Mike

Chairman OUCHUK

 
 
 
Chairman OUCH UK

Thu, 01/05/2014 - 15:15 (Reply to #2)
cityjeff
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Hi MIke, yes I am and I would be grateful if you would call. Thanks

Fri, 02/05/2014 - 13:12 (Reply to #3)
Mike
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Hi Jeff, will call you, may be over the weekend

 

Mike

 
 
 
Chairman OUCH UK

Tue, 22/07/2014 - 11:33
Amethyst73
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Having same issues sat moment Atos then have pip next yr if made to feel way was at Atos don't think pip will be any better I too live alone no support & on limited income so your not alone I felt same till I joined ouch if you ever need a chat pm me as feeling alone right now after nasty cluster last night & very early this am & am getting nasty left eye pain & sinus pain but been told cant have the amount of xygen that I need so makes them a lot harder as have to ration myself 

Tue, 22/07/2014 - 16:47
ElizabethK
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Amethyst, I am so sorry you are going through this alone, please phone the Helpline 01646 651979 and leave a message an someone will get back to you.

take care

Liz

Tue, 02/12/2014 - 16:18
Barra2305
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I everyone. I suffer from CCH, Chronic migraine and hermicrania continuia. I applied for PIP and was rejected and currently been reconsidered. Please can anyone give me advice on how we go about get the decision over turned? I had to give up work a year ago due to having up to 15 attacks per day 

Nicola Barraclough

Tue, 02/12/2014 - 19:03
Val
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Barra [sorry don't know your name]

contact our officer member Jason who advises on work related and benefits issues:  rights@ouchuk.org  If he can't help, he will refer you on to someone who can.

 

Val.

Thu, 04/12/2014 - 15:35
CBailey
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Barra, 

I'm sure Jason has given you great help via email, but I wanted to throw my 'two pence' in for what it is worth. I was awarded higher allowance on both sections of PIP last January. I answered the forms and the medical assessment as if it was a bad day (which is most days unfortunately). I insisted on having a home visit for the medical assessment. I supplied a large amount of information about CH and its impact on an individuals quality of life. I am blessed with an amazing neurologist who wrote a letter of support, and I believe that really swung the decision for me - if you haven't got a letter of support from a medical professional, I'd really encourage you to ask for one, or at least send copies of clinic letters. I hope your appeal is successful - it's a real shame they don't understand the impact of such conditions!

Arise and be all that you dreamed.

Tue, 09/12/2014 - 12:23
Julia7162
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Hi all

i have recently completed a pip form due to having cerebal palsy. I have mentioned I suffer with CH and sent a monthly diary along with it.

i have only found this website since completing pip. But have just rang helpline regarding treatments as I have experience  72 headaches in the day time ( haven't logged night time ones) over the last 30 days.

i didn't realise that ch would be consider for pip, so didn't go into much detail on form a part from stating it affect my concentration and I avoid driving where necessary.
 
is it worse me explaining this in the assessment I am going to have?
 

any advice would be helpful.

Thu, 11/12/2014 - 15:44
Val
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Yes, I would think so, as CH is a disability. - Employment Tribunal Law say so.  Things like we can walk okay, but we can never be more than five minutes from wherever our medication [injectoins and oxygen] are.  Our reaction to the extreme pain means we don't like to have attacks in public.  Heat can trigger attacks, so hot kitchens, hot work environments are out.  Our sleep is severely disrupted and its almost impossible to hold down a full time job during bouts of CH; even worse if you are chronic.  Because we never know when an attack will strike, even a simple trip to the shops becomes problematic.  Hundreds of us can tell stories of abandoned supermarket trollies, having to leave restaurants before a meal is served, creeping out of cinemas etc.  We are restless and disoriented during attacks, and ideally need someone with us during attacks to make sure we are okay - I've fallen down the stairs twice trying to find the bathroom in a house we have lived in for 20 years!  Some of us sweat during attacks and need help to change nightwear and bedclothes.  Because we need to be close to our meds, we tend to stay at home and can become isolated.  We rarely know another sufferer and that too is isolating.  So, perhaps you can get an idea of how CH can affect people. 

Val.

Tue, 16/12/2014 - 01:40 (Reply to #11)
JANEHAMMOND
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Thank you for this Val as I have now received my court papers and after waiting 15 months for P.I.P I have had to fight to get my rejection overturned, although there is no telling what the outcome will be, this process is far too long, I had to wait 12 months for a home visit and the nurse who done it, had to look up CH before her visit.

 

Tue, 23/12/2014 - 14:47
Mike
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Julia, you have said in your post you have had 72 headaches in a day. Please confirm because if this is the case you probably have been misdiagnosed with CH.

 
 
 
Chairman OUCH UK

Thu, 25/12/2014 - 17:58
Julia7162
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Sorry mike I had 72 over a month period during the day time, didn't include the night time attacks  on average we're between 3-4 a night on top every night

Thu, 26/03/2015 - 15:31
☽Ţ ҉ĥϋηϠ₡яღ☯ॐ€ðяئॐ
☽Ţ ҉ĥϋηϠ₡яღ☯ॐ€ðяئॐ's picture
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Hello Ouchers this is my first post but I found the forum initially through this thread on a google search

for my careworker because she doesnt seem to understand what cluster headaches are..

 

goodness me i hope you find something to help

good thread here, this was really useful

I look forward to making new friends here because its been liberating to find fellow sufferers who will actually know what it's like.

- hoss

 and PM Mike

Sat, 28/03/2015 - 18:59
Val
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Sam, I've e-mailed you regarding the problems you are having.  Mike is not too well at the moment and he asked me to contact you.

Val.:)

Wed, 22/02/2017 - 15:04
David Edmunds
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Im not sure whether to let dwp know about my cluster headaches yet i too suffer chronic cluster headaches diagnosed last may with at least 4 episodes daily i have verapamil 120mg 3x day zomig nasal spray and oxygen also greater optical nerve block at moment get dla for my depression but have since been diagnosed with emphysema and cch my dla award runs out in nov took 2yr appeal to get originally so do i wait or bite bullet and put in claim

Wed, 22/02/2017 - 15:05
David Edmunds
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Joined: 23/06/2016 - 17:16

Im not sure whether to let dwp know about my cluster headaches yet i too suffer chronic cluster headaches diagnosed last may with at least 4 episodes daily i have verapamil 120mg 3x day zomig nasal spray and oxygen also greater optical nerve block at moment get dla for my depression but have since been diagnosed with emphysema and cch my dla award runs out in nov took 2yr appeal to get originally so do i wait or bite bullet and put in claim

Sat, 04/03/2017 - 13:28 (Reply to #18)
lisagm1974
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Val you have just described my life to a tea and i have just been refused PIP. How can you explain the pain and anxiety, the stress of embarrassment and loneliness to someone who has never experienced a attack

Tue, 07/03/2017 - 12:10
Val
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Hello Lisa

I've e-mailed you with details of how to get help and where from with PIP applications.  And we do have an attack video which we can send you so that you can show your assessor what happens when a CHer has an attack.  You might even be able to show it to a tribunal panel, but you would need their permission to do so.  Back up your application with a medical report from your neurologist, GP and anyone else who looks after you for CH.  Describe what happens to you based on every day is a bad day and some are worse, that you live with the ever present fear of an attack starting, but you don't know when,  of the embarrassment of having an attack in public, how you need to be near your meds/oxygen at all times, that you can't plan your life because you never know when the beast will pop out to play.  Give them every detail of what happens to you.  Ask for a home assessment because you may need to deal with an attack during your interview/assessment.  We are going to be drafting some general advice on PIP applications and watch the website resources page for a new item on PIP.

Hope this helps.

Val.

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