Support with late onset conditions: Live Q&A on Tuesday, 16 August

Viewing 20 posts - 21 through 40 (of 41 total)
  • #136408
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Thank you for joining taungfox, Our Bridging the Gap team are always looking for ways to help upskill other health professionals, having the GP module and the physio module goes some way but there is more to be done.

    I am sorry to hear about some of the struggles to get the right financial support, what are people able to get financially and has anyone experienced any issues in getting these? KenDRUK are you able to let us know some financial support available people may be unaware of?

    JoelR JoelR
    Participant
    Posts: 0
    Joined: 01/12/2015
    #136409
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    I am delighted to hear that you found your OT and Regional Care Advisors very helpful, taungfox.

    We are currently working on updating our Adaptations manual. This will hopefully be ready by the end of the year. It will be downloadable from the MDUK website and available to all. It will contain up-to-date information on equipment and adaptations and how to go about getting them.

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
    #136410
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi Wonder Woman,

    Firstly I must apologise that you did not get a reply to your email.

    I and my colleagues always try to respond to all messages we receive.

    Unfortunately we’re not resourced to answer individual benefit queries or undertake case work and would have recommended that you seek the advice of a local advice agency – http://www.disabilityrightsuk.org/getting-advice

    Again I am sorry that your wife was unsuccessful in her appeal and that you feel that you were not supported sufficiently by your local CAB and law centre.

    I’m unsure if you’ve sought the advice of another agency in Harrow – Harrow Association of Disabled people who do offer welfare rights advice – http://www.had.org.uk/welfare-benefits.php

    Ken DRUK
    Participant
    Posts: 0
    Joined: 12/08/2016
    #136413
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Joel, thanks for the link to the SE report, will look at it.

    David Morgan
    Participant
    Posts: 0
    Joined: 15/08/2016
    #136415
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi Ken,

    Thanks so much for the advice.

    While we have Ken with us, does anyone have any questions about financial and practical support that might be available?

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #136416
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Excellent news on the Adaptations manual.

    Still have it on CD.

    Have not been able to use the heavy laptop for
    a year now so it is unusable. Delighted you are coming
    up with a downloadable method I can use on my tablet.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #136418
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    You ask about financial matters.

    How about the stress of waiting 72 weeks after sending in my ESA50 form
    before getting the result.

    I put this down to ATOS not understand late onset conditions!

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #136419
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi This is my first visit to this forum. At he age of 64 I received confirmation in November 2015 that I am a Manifesting Carrier of Becker MD. Like Pam looking back I can see quite a few clues, but dismissed as I had always been a walker and very active. But in more recent years problems stated to occur and again I started to suspect. Having raised two sons both diagnosed with Becker at the age of 5 years old and now in their late 30,s. I have gained quite a bit of knowledge over the years. Although I had visited my G.P in more recent years with problems in my legs lower back etc. things did not seem to add up I decided to ask for a referral.

    4sharon ledbrook
    Participant
    Posts: 0
    Joined: 16/08/2016
    #136420
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Delighted that you found the original useful, taungfox. It still is a great document. It requried some updating as many things have changed since it was first published in 2003.

    We will keep everyone posted when the new version is close to completion

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
    #136421
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi taungfox,

    That is much longer than we have experienced before for ESA. Did they ask you questions about the condition or make an effort to find out more?

    If you feel like someone does not understand your condition we do have a range of condition factsheets which outline more information, these can be submitted during benefit application or passed over to others. All the information in these reaches information standards and are put together by health professionals.

    The Muscular DYstrophy UK advocacy team would also be happy to provide a supporting letter. Just call the helpline on 0800 652 6352.

    JoelR JoelR
    Participant
    Posts: 0
    Joined: 01/12/2015
    #136422
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi,

    Although there were not many questions about benefits this afternoon, the following link to our free on-line factsheets might be of interest.

    There are over 70 factsheets covering benefits, independent living, education and other issues –
    http://www.disabilityrightsuk.org/how-we-can-help/benefits-information/factsheets/factsheets-alphabetical-order

    MD UK also have many useful factsheets available on-line –
    http://www.disabilityrightsuk.org/how-we-can-help/benefits-information/factsheets/factsheets-alphabetical-order

    Ken DRUK
    Participant
    Posts: 0
    Joined: 12/08/2016
    #136423
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi Sharon,

    Thanks for joining us and sharing your story. Have you had any support since your diagnosis?

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #136424
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    I have had a lot of support. As I have been involved with MD since my boys were diagnosed. So feel we have been on a long journey and still travelling. however I have had many fights and challenges along the way and it would seem I have more to come as at the moment waiting for tribunal date for PIP but more on that at a later date

    4sharon ledbrook
    Participant
    Posts: 0
    Joined: 16/08/2016
    #136425
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi Sharon,

    I’m so glad to hear you’ve had a lot of support. I know that our advocacy service has been helping with the PIP appeal, so do keep us posted and let us know if we can provide further assistance.

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #136426
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    The biggest factor I find about adult onset conditions is
    the psychological one of the major change in people’s
    lives.

    From active normal lives running marathons etc. to in a relatively
    short space of time have drastically reduced lifestyles. It does
    take an enormous adjustment.

    Also the normally trained medical professionals often just do
    not get those exact points and the effect it has on
    people.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #136427
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Thank you all so much for joining our chat today. Our live Q&A has now ended, but if anyone was unable to join or if you have further questions our care and support team would be happy to help!

    Please feel free to contact us via our freephone helpline on 0800 652 6352 or email us at info@musculardystrophyuk.org

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #136428
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    I am signing off now. I wish everyone all the best in getting whatever support they need.
    If anyone would like to contact me direct I would be more than pleased to hear from you. I can be contacted through the Advocacy Ambassador link.

    Pam Skingle – Advocacy Ambassador
    Participant
    Posts: 0
    Joined: 11/08/2016
    #136429
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Delighted that you found the original useful, taungfox. It still is a great document. It requried some updating as many things have changed since it was first published in 2003.
    We will keep everyone posted when the new version is close to completion

    This is good.

    Thanks your reply.

    Hope they can incorporate things like calculators for doorswings and turning circles
    that are so vital for people as they find the need to radically make
    changes to their homes.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #136430
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi taungfox,

    I think you raise a very good point. Have you ever sought emotional support?

    We have a guide on how to access counselling through the NHS, but there are also a number of organizations that provide emotional support outside of this as well as the care advisors. Our factsheet can be found here: http://cdn4.musculardystrophyuk.org/wp-content/uploads/2015/02/Counselling.pdf

    I do hope this helps, but we would be happy to discuss this further.

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #136431
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi Wonder Woman,

    Firstly I must apologise that you did not get a reply to your email.

    I and my colleagues always try to respond to all messages we receive.

    Unfortunately we’re not resourced to answer individual benefit queries or undertake case work and would have recommended that you seek the advice of a local advice agency – http://www.disabilityrightsuk.org/getting-advice

    Again I am sorry that your wife was unsuccessful in her appeal and that you feel that you were not supported sufficiently by your local CAB and law centre.

    I’m unsure if you’ve sought the advice of another agency in Harrow – Harrow Association of Disabled people who do offer welfare rights advice – http://www.had.org.uk/welfare-benefits.php

    Thank you but, no thank you.

    As I say, I have tried my best to get advice & assistance from every part of the UK & have resigned myself to the fact I am in this fight on my own.

    I haven’t lost the fight or failed my wife yet. We still have the UT to look forward to :bang: .

    The principle behind the EU Social Security Coordination Regulations is that you are not left uninsured, regardless of your State of residence.

    I am utterly ashamed to say my own country & government are trying their best to circumnavigate these Regulations meaning my wife is in limbo.

    I have resigned myself to the fact that I will take this fight to the DWP to the bitter end, on my own. My months of studying means I am now in a much better position than most of the organisations I’d originally contacted, including your so-called legal partners, Irwin Mitchell, to deal with this as I have a reasonable understanding now of the Coordination Regulations & have referenced rulings in case citations in my wife’s defence.

    We currently live on £254.90 ESA in the support group between us per fortnight. I’d like to see how those in government & at the DWP try to manage to keep two disabled people alive on that amount.

    There is nothing noble in being superior to your fellow man; true nobility is being superior to your former self

    I, Disabled Bloke
    Participant
    Posts: 540
    Joined: 29/10/2010
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