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.

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

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.

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.

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.

Anonymous wrote:

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.

Ken DRUK wrote:

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 .

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.