PIP, DLA and AA
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Support and guidance with PIP

Chill2computerChill2computer Member Posts: 7 Listener
edited January 2019 in PIP, DLA and AA

I’m just a person, amongst many, desperately seeking support and guidance, dealing with the PIP system.   






Replies

  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @Chill2computer, and a warm welcome to the community! Do feel free to post any queries in our PIP/DLA/AA discussions.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Chill2computer   Pleased to meet you welcome.

    Thank you for joining and sharing.

    I am one of the team of community champions who guide, inform and advise  new members who join.

    Citizen's Advice have a question by question guide to filling in a PIP form.

    On their website which is very useful.

    You could also contact your local bureau .

    CAB have expertise and knowledge on benefits. Benefits are complex and confusing you need the right information.

    Please ask if we can advise on anything. Some one will know from our community or a member of our team.

    We are friendly. Care and share.

    Please take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
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  • Chill2computerChill2computer Member Posts: 7 Listener

    Thank you for information. Do you have any further advice with the following:

     I have Asperger’s and a son with Autism; I’ve handled the PIP process and tribunal hearings for the both of us over the past few years. This took a lot of time and energy however I’m now supporting my aunt who has Dementia who cannot communicate so I communicate and fill out forms with her. I also have a brother with autism Schizophrenia who cannot communicate. This makes appointments with CAB difficult as they cannot communicate, literally, with any adviser and I also have a communication difficulty. They have no one else who can help and support rests on my shoulders. My brother’s mental health team are completely useless so there is no help from them. My PIP is again due beginning of March and I’m falling apart under so much pressure. I cannot literally fill out forms so I go to CAB for this support. Do you know of anyone who can support my brother and Aunt through the PIP process?






  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Chill2computer Thank you for reply.

    Sorry what you are going through. Understand the stress .

    Have you spoken to your Doctors and asked for some support.  Could help with additional support.

    I know this is difficult but I have to say if the health team were not working for me. The treatment and support not very good. Find on line other support. This I have done myself had to.

    Used mental health charities last one was this organisation helped with benefits, assessments, forms and general health wellbeing.

    https://www.richmondfellowship.org.uk.

    Other organisation is The Autistic Society have you been in touch . Asking for any thing they can suggest.

    Helpline 020 7833 2299 Monday to Thursday 10am 4pm.

    Friday 9am to 3pm.

    Might need to look at Power of attorney for your brother or Advocacy.  To represent his interests and his welfare.

    Used a charity called RETHINK .  These are an advocate service for people who have mental health problems. Need some one to talk on their behalf. I used them for Doctors and hospital appointments.

    Struggle my self with mental health issues.  Communication problems need them to speak for me.

    There might be worth contacting have a look on line for your local services.

    AGE UK might be worth contacting for your aunt.  Might be useful to ask for their support.

    Helpline 0800 055 6112  https://www.age.uk.org.uk.

    You are not alone we are here to help and please ask if we can. Some one will know.

    Pleasure to meet you.

    Take care.

    @thespiceman



    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • YadnadYadnad Posts: 2,856 Member
    I really feel for the poster. However to clarify somethings. The Richmond Fellowship have outreach workers but they only deal with people within their catchment area.
    As for the CAB there have been quite a few bad comments on here about their ability to 'care' for people like the poster and the family. They do seem to be a bit hit or miss.
    AgeUK as you know only deals with the elderly (over 55 I believe) and are not that geared up to do the amount of work and advice the poster needs (if my one is an example).

    There are many agencies that cater for mental health difficulties but none that offer professional welfare advice, assistance, support and representation.

    The only one that I found to be part decent was MIND but once again what their abilities are as regards detailed benefit support and representation I don't know..



  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Yadnad only put those suggestion ones I could think of.

    Yes Richmond Fellowship your correct it is about the area you live in.  Catchment area but also may able to sign post to other organisations with in the charity.

    Had this myself they contacted RETHINK  who are an advocacy service. For my self and used them problems with my Doctors and hospital.

    Helped with communication difficulties.  Do know bigger than MIND had has a recovery programme my own branch many other subsidies as well all under the umbrella of The main charity.  Richmond Fellowship.

    Because when the addiction problems I was having they added there are many other leads we can help you with  in the charity.

    May I add they do have and will attend welfare meetings, assessments and assist with forms. I do know this because one such support worker in the charity . Helped me with forms, going to assessments.

    If not they can very much help and guide you in the right direction.  Part of the charities ethos is it is the client who is the main focus. Of which you are asked to attend meetings any suggestions and ideas.  With agreement by management.

    AGE UK have the website again yes your correct up to 55.

    Although may I add asked for  welfare support and advice and they sent me some organisations to refer to. Was last year and was 54.

    Asked is this website available for people of a certain age yes was the answer but will advise and help any one who needs it.

    Just wanted to clear that up.

    Only issues I have had is the termination of contracts by many mental heath charities because you are a fixed term. Also if they think you well enough to cope.

    Have to because of budgets and funding. 


    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • YadnadYadnad Posts: 2,856 Member
    Only issues I have had is the termination of contracts by many mental heath charities because you are a fixed term. Also if they think you well enough to cope.

    Have to because of budgets and funding. 

    My only gripe with MIND was the promise made by the NHS when they decided to close down the state of the art Mental Heath Day Service and convert it into a 'walk in centre' for grazes and cuts.
    They promised that MIND would take over the care and rehab for those that needed the day service. In my case I never heard from them or anyone else to be honest. All of us were left in limbo in having to go back to our respective GP's.

    So I don't have much faith in them,

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Yadnad I am in agreement with you about MIND.

    Those of us with addiction histories and mental health.  Would be refused help and assistance from a certain branch where I used to live.

    After being told to visit.  By the rehab concerned.

    Nothing in the area. Ended with myself moving to another area. Had to make that choice .

    Sorry sad state of affairs whole system as we all know.

    My last support worker stressed continuously due to high work demands of people wanting assistance.

    Something seriously wrong with the system when a support worker sending you Emails late at night just communicate with you. During the days too many referrals and not enough time to do the paper work.

    Reports and care plans.

    If you fail to turn up or miss appointment either CPN or other. Will go onto the next one.  With out some explanation.  Do not ring them.

     Failure to help yourself on to the next patient or client seen that as I know too well and myself not agreeing to something I did not or want.

    Good to talk to you.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Chill2computerChill2computer Member Posts: 7 Listener

    I would like to thank everyone for their response and huge thank you for all the information.

     I will just keep plodding on and do my best for now. It would be so much easier if the PIP entitlement was given for longer because it takes about a year to process if I attend a tribunal hearing and filling out PIP forms again a year before entitlement ends. If I get my PIP award for three years that only gives me one year grace before it all starts again. This includes three family members I’m trying to support. This is all my life is at the moment. Wishful thinking PIP could be given for longer than 5 years, LOL

     






  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    PIP awards given by a Tribunal aren't reviewed 1 year before the award is due to end. You'll be contacted 14 weeks before the award ends.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited January 2019
    Hello @Chill2computer Thanks very much for contacting the forum and community.

    We as a community are here to help and advise. Whenever you wish to.

    I agree with you about the PIP.  Been doing the system for a long time. So I do understand the problems and issues you are having.

    Wish you all the best.

    Take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • YadnadYadnad Posts: 2,856 Member

    I would like to thank everyone for their response and huge thank you for all the information.

     I will just keep plodding on and do my best for now. It would be so much easier if the PIP entitlement was given for longer because it takes about a year to process if I attend a tribunal hearing and filling out PIP forms again a year before entitlement ends. If I get my PIP award for three years that only gives me one year grace before it all starts again. This includes three family members I’m trying to support. This is all my life is at the moment. Wishful thinking PIP could be given for longer than 5 years, LOL 

    I know what you mean. My transfer from DLA started in late 2013. Since then I have had a total of three PIP face to face assessments resulting in eventually getting 3 year awards. With them being shortened to two years when they contact you again, I ended up having these re-assessments every other year 2013, 2015. & 2017!
  • mikehughescqmikehughescq Member Posts: 6,293 Disability Gamechanger

    I would like to thank everyone for their response and huge thank you for all the information.

     I will just keep plodding on and do my best for now. It would be so much easier if the PIP entitlement was given for longer because it takes about a year to process if I attend a tribunal hearing and filling out PIP forms again a year before entitlement ends. If I get my PIP award for three years that only gives me one year grace before it all starts again. This includes three family members I’m trying to support. This is all my life is at the moment. Wishful thinking PIP could be given for longer than 5 years, LOL

    Have you ever considered a carers assessment? You’ve an awful lot on your plate.
  • Chill2computerChill2computer Member Posts: 7 Listener

    Thank you for taking you time to respond to my posts.

     

    Yes I’ve applied for a carer’s assessment but the irony is ‘carers’ assessment process seems to take just as long the PIP process. The only outcome is to throw a few hundred pounds my way, not what i want or need.

    There doesn’t seem to be any kind of system in place if a person cares for numerous people at once. How ridicules! I well keep smiling and plodding on.

    I do have a question: is there any place I can turn to, enabling me to be more organised to manage the people I care for? (This might help prevent me from constantly becoming overwhelmed and melting down two days or three days a week) I’ve looked but can’t find anything.






  • YadnadYadnad Posts: 2,856 Member

    Thank you for taking you time to respond to my posts.

     

    Yes I’ve applied for a carer’s assessment but the irony is ‘carers’ assessment process seems to take just as long the PIP process. The only outcome is to throw a few hundred pounds my way, not what i want or need. 

    That certainly rings a bell for me.
    A few years back my wife was at her wits end with me and needed someone to help her professionally. She eventually filled out a form which resulted in a chat with another lady in a local coffee shop . Next thing she had a phone call from SS telling her that she has been awarded a grant of £250 so as to treat herself.

    That was it - no further contact since.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Chill2computer I have a number for Carers UK.  Also have website information.

    In response to your question. Asking about how to manage your duties.  As a Carer.

    Understand the difficulties you are experiencing.

    Carers UK 080 808 7777

    Https://www.carers.uk.org.

    [email protected]

    Hope that might help.

    @thespiceman




    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • mikehughescqmikehughescq Member Posts: 6,293 Disability Gamechanger

    Thank you for taking you time to respond to my posts.

     

    Yes I’ve applied for a carer’s assessment but the irony is ‘carers’ assessment process seems to take just as long the PIP process. The only outcome is to throw a few hundred pounds my way, not what i want or need.

    There doesn’t seem to be any kind of system in place if a person cares for numerous people at once. How ridicules! I well keep smiling and plodding on.

    I do have a question: is there any place I can turn to, enabling me to be more organised to manage the people I care for? (This might help prevent me from constantly becoming overwhelmed and melting down two days or three days a week) I’ve looked but can’t find anything.






    I’d request another carers assessment and make it clear that you’re looking for support not a carers payment or personal budget.
  • Chill2computerChill2computer Member Posts: 7 Listener
    Hello @Chill2computer I have a number for Carers UK.  Also have website information.

    In response to your question. Asking about how to manage your duties.  As a Carer.

    Understand the difficulties you are experiencing.

    Carers UK 080 808 7777

    Https://www.carers.uk.org.

    [email protected]

    Hope that might help.

    @thespiceman




    thank you so much i will give them a call today.
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