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

Let me introduce myself my name is Pam Skingle and I am an Advocacy Ambassador with MDUK. I am 66 and was first confirmed as having FSH MD when I was genetically tested at the age of 60. Although I was not diagnosed until later in life I can look back through my life and realise that signs have been there throughout. My condition has deteriorated considerably in the past 6 years. Seven years ago I was still able to go on long countryside walks now I struggle to keep my balance and walk more than a few yards. My upper body strength has also deteriorated. Following the diagnoses I struggled to get any support for the first 3 years until I attended my first FSH MD conference and found out that there were specialist muscular neurologists with whom to register. I joined the FSH Registry and found that my nearest specialist was based in Nottingham and requested a referral from my GP. Following my first consultation with Dr Maddison he wrote to my GP suggesting areas where I needed help. From that time I have been given a lot of support especially from the Rehabilitation Department in Lincoln Hospital.
This is a short introduction and I would be pleased to answer any questions.

Hi, my name is Ken Butler and I’m a Welfare Rights Adviser at Disability Rights UK (DR UK).

I’ll try to give some feedback on any benefit related issues that are raised this afternoon.

DR UK is by people with diverse experiences of disability and health conditions, from different communities. We work with allies committed to equal participation for all.

You can find out our membership, services, publications and policy work @ http://www.disabilityrightsuk.org

Hi Ken, I get a weekly e-mailed update from your site, always find it interesting.

Hi Pam and David,

Thank you for joining this discussion. For conditions such as IBM it is only recently we are getting larger numbers of diagnosed individuals coming through. This is a mixture of developments in research and a greater understand of muscle-wasting conditions in general and in IBM among medical professionals. This is probably much of the explanation as to why it did takes so long, with the developments in even the past few years we are hoping to see much quicker diagnosis.

Muscular Dystrophy UK have produced a GP training module which helps to upskill GPs to learn more abut muscle-wasting conditions and have a better understanding of the symptoms, please do share this with your own GP where appropriate.

Do you feel that since the diagnosis of your conditions you have been supported as much as you have needed?

Hi everyone,

My name is Corinna Keaney. I am one of the Advocacy and Information Officers for MDUK. I am also an Occupational Therapist and am happy to provide advice where I can on adaptations and equipment as well as the process required to obtain them.

Has anyone experienced difficulties in obtaining equipment or adaptations from their local NHS/Social services teams?

I can’t join this discussion because I have promised to take my wife to town while the weather’s still nice.

I’d like to say to Ken @ DRUK, it is nice to see you hear & I hope someone can benefit from your insight or offer of assistance.

However, I contacted your organisation via your contact details on your site & never got a reply. The situation with my wife & I (who is also disabled & Estonian) seems to be rather complicated & nobody but, nobody wants to assist us.

We’re embroiled in a fight with the DWP now over the competent State responsible for my wife & have been abandoned by CAB & the law centre at Harrow wouldn’t take our case on at UT.

I am 45 now, I wasn’t diagnosed myself with type 2A LGMD until I was 28 & have several issues with anger management due to being frustrated at being able to do something one day & not the next & have problems in the bathroom that are an issue every day until that moment has passed. This is the only issue though that may about to be resolved as I am currently waiting for a new toilet to be installed after applying for a DFG.

I knew nothing about my own benefits entitlements & have had to learn & fight for myself & now, since October 2014, I’ve had to research case citations & EU Coordination Regulations all by myself & to the detriment to my health, sitting in front of the PC for hours on end, to get to this stage now, at the upper tribunal. The court has just asked for a copy of the case file from the FTT at Watford. I am representing my wife.

As I say, I sincerely hope you can assist someone here & your involvement is welcome but, I personally am disappointed nobody could even take the time to email me back to say they couldn’t assist or advise me when I enquired some months ago.

Am I right in thinking that your partners are Irwin-Mitchell? I’m going on memory alone so I may be wrong but, I also contacted them & they too didn’t have the courtesy to reply.

I feel very alone in dealing with all of this crap as well as my own daily fears, anger & frustration & feel quite alone to be honest & still try to put a face on it so my wife doesn’t see it gets to me but, it’s bloody hard.

The DWP wouldn’t leave us both alone to live on just my entitlements, we’ve had to reluctantly apply for things for my wife & now those entitlements (or lack of them) imperils us both as they have a knock on effect with my own benefits.

We told all the right people that my wife was here, been completely honest & we’re being persecuted for it.

Should I as a disabled person not be allowed to be married without financial penalty? This government & the DWP don’t think so!

I have to go now. Sorry for the rant. It’s the first time I’ve shared a lot of this with anyone on here as I don’t wish to be identified by the snoops at the DWP, hence the unusual moniker.

Thanks very much for addressing these issues.

Inevitably late onset conditions are confusing both to the
sufferers and the medical professionals.

Many of us go through years of misdiagnosis and worry
before getting anywhere near an acceptable situation.

I was lucky after many years of confusion to get a great
deal of help from the Regional Care Advisors and recently
a committed O.T. who has been willing to learn new things. She
even visited yesterday for a “catch up” and found two
ways to help with the effects of “progression” since her last visit.

Sadly the G.P. s have been slower to learn even with the learning
module online that has been so needed.