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Hi Everyone first time on this site

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sunlight
sunlight Community member Posts: 12 Listener
My name is ‘Sunlight’ I thought I would choose something cheerful to try and cheer myself up a bit!

 I am a full time carer for my husband who has Vascular Parkinson’s and possible dementia. He also has heart disease and other heart issues.

At the moment, life is extra stressful because I am trying to help a friend navigate the PIP system. She has really disabling OCD. I found it difficult to get the full extent of her mental health problems across on the PIP form. I hope we managed it. I think we did the best job we could. I am determined to support my friend right through to tribunal if we have to. She has had OCD for many years and it can be such a disabling condition. She cannot work and has been trying to manage on ESA for years. 

 We went for the dreaded assessment today.  We got through it as well as could be expected. We can only wait and see now.

 I have been reading posts on this site and people seem so supportive. I am hoping I will be able to get some support from some of you, both for my friends PIP case and with caring for my husband as his Parkinson’s and other conditions progress. 

Thanks everyone 

Comments

  • bg844
    bg844 Community member Posts: 3,887 Disability Gamechanger
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    A decision should be made within 2-12 weeks. If you need any support, there’s always someone online to help you. Good luck!
  • sunlight
    sunlight Community member Posts: 12 Listener
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    Thank you, that is good to know. Do you think we should ask for an assessment report and if so, when should we do this? Also, I recorded the  whole thing as others suggested. However, we were told by DWP we cannot use in any MR or tribunal so I am not sure what use the recording is really,  if anyone can help me with that? 
  • sunlight
    sunlight Community member Posts: 12 Listener
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    One other thing, we made our first call to DWP, Oct 22. My friend is currently in receipt of ESA, as for physiological reasons she  cannot use one hand and cannot cut food or carry pans. She cannot prepare a simple meal. However, for a variety of reasons her OCD was being ignored. We initiated the new claim in Oct so will she be entitled to back benefits for the OCD part of the claim at least? I gather that will not be the case for her hand where any PIP awarded will simply replace her DLA? 
  • chiarieds
    chiarieds Community member Posts: 16,133 Disability Gamechanger
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    As PIP is not about any diagnoses, then the problems with her hand & OCD would not be looked at separately, rather how her problems affect her functionality in attempting any applicable activity/descriptor reliably (i.e. safely, to an acceptable standard, being able to repeat the task as often as would be reasonable, & not taking more than twice as long as a person without her disability).
    If awarded PIP, then her DLA will just continue until 4 weeks after a decision is made, when PIP would start, so no back payments would be due.
    She can ask for a copy of her assessment report about a week after her assessment, tho it's probably better to wait for the actual decision letter as the report is just a recommendation.
    The DWP or a tribunal either don't have the time or equipment to listen to a recording, so it's really only useful for her own personal use.
  • sunlight
    sunlight Community member Posts: 12 Listener
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    Thanks for that information. We had got the wrong end of the stick with regard to back payments. Though, if she got more points to those attributed to her DLA,  
    or the mobility part which she did not previously get,  would these be backdated please.
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Unfortunately not there I'd no backpay when transferring from dla to pip 

    If you think about it the opposite way eg if pip award is less than dla then if they backdate money would be owed so there are no back payments 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hello again @sunlight I'd just like to welcome you to the community, thanks also for sharing a bit more about yourself.

    My grandad had Parkinson's in the latter years of his life, and sometimes had symptoms close to dementia, so I can imagine that having both together can be a real struggle for everyone to manage. I hope your husband still has some good days amongst the more vague ones. It can be hard dealing with these changes in the people we love, and for them too. 

    I believe any back dated payments would only come in from the start of a new claim, but I'm not an expert on this area myself.

    I hope you can find the support you need here, and please do ask if you have any other questions or concerns :) 
    Online Community Coordinator
    Scope

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  • sunlight
    sunlight Community member Posts: 12 Listener
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    Thank you yes  it is hard especially as I have severe OA, exacerbated by fibromyalgia. It makes it difficult to be patient and sympathetic when in pain. Not looking for sympathy just how it is. We are both seniors. Just us really. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    I hear you @sunlight. I have fibromyalgia too. I hear that tolerance and patience can be thinner when in pain. Does anything usually help you when you are in pain?  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • sunlight
    sunlight Community member Posts: 12 Listener
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    Hi sorry you have the horrible condition too. 
    I try to stick to paracetamol but do resort to Codeine Phosphate when it is really bad. I try not to take too much as I do not want to get addicted. 
    Other than that heat sometimes helps and I keep moving when I can. It is just the condition makes my arthritis and scoliosis worse. Unfortunately as you will know these things make you upset and being upset makes everything worse. 
    Like a horrible circle. 
  • Siwheels73
    Siwheels73 Scope Member Posts: 746 Pioneering
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    Hi, and welcome to a brilliant Forum, @sunlight
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
    edited January 2023
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    Completely hear you @sunlight in finding that balance, a difficult one to find indeed. I'm similar to you in that I find heat helpful. I completely hear you and agree with the vicious cycle.

    I know others who the cold works better for though. It sounds even more difficult that it makes your arthritis and scoliosis worse  :( Does anything help to reduce this interaction or is it about managing them all individually?
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • sunlight
    sunlight Community member Posts: 12 Listener
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    No I agree sometimes cold is best. In summer, for instance, ice can be good. 
    All the conditions merge into one really and I don’t so much manage them, as survive them.
    Of course you are told by the doctors that there is nothing they can do and, or,  it it is normal at your age, a comment that makes me want to scream by the way. 
    It is a matter of living with it I suppose and I have little time to go to doctors anyway as there is always some drama with hubby. I always say there is only room for one of us to be ill in this family. 
    It is only now, that I seem to be losing use of my left hand, that I will go to the GP next week.I will see what gems he comes out with this time! 
  • sunlight
    sunlight Community member Posts: 12 Listener
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    Thank you all for welcoming me to your site. I don’t really have anyone to talk to here as hubby is very withdrawn. It is like living on my own but there is someone sitting in the chair, usually snoring. I feel like I am living in an old people’s home and I hate it because I am very young at heart. 
  • durhamjaide2001
    durhamjaide2001 Community Co-Production Group, Scope Member Posts: 10,893 Disability Gamechanger
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    I'm sorry to hear this but I'm glad you are able to find a fun loving community like us. 
  • sunlight
    sunlight Community member Posts: 12 Listener
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