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

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  • #135447
    Support with late onset conditions: Live Q&A on Tuesday, 16 August

    When you are diagnosed later in life with a condition, it can be difficult to know what support is available to you. Join our live Q&A here on the TalkMD forum on Tuesday 16 August, from 1pm to 2.30 pm, to have your questions answered. The Muscular Dystrophy UK care and support team will be online to answer your questions about the financial and practical support you’re entitled to.

    We will be posting additional information, including guests who will be joining our Q&A, closer to the time. We look forward to speaking with you soon! In the meantime, for any questions please feel free to contact our care and support team on 0800 652 6352.

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #136084
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    You can join the forum here http://www.musculardystrophyuk.org/register/

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #136369
    Reply To: 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.

    Pam Skingle – Advocacy Ambassador
    Participant
    Posts: 0
    Joined: 11/08/2016
    #136384
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    I also have a late onset muscle wasting disease, inclusion body myositis. Why do you think it is that it takes so long to get to see the people you should be seeing and get a correct diagnosis. In IBM I believe it takes on average seven years to get a diagnosis and sometimes not clear even then.

    David Morgan
    Participant
    Posts: 0
    Joined: 15/08/2016
    #136385
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    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

    Ken DRUK
    Participant
    Posts: 0
    Joined: 12/08/2016
    #136387
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    I guess I know a rough answer to my question. There should be a neuro-muscular nurse/specialist at each hospital in a region. there is not any in my region (SE) has the post that Pammy Malhotra vacated been replaced? The NHS did finance this post for a couple of years, is it continuing?

    David Morgan
    Participant
    Posts: 0
    Joined: 15/08/2016
    #136388
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

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

    David Morgan
    Participant
    Posts: 0
    Joined: 15/08/2016
    #136389
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    I think the problem starts with lack of knowledge or experience in Muscular Dystrophy by GP doctors. Same thing could be said of some specialists. In my case I was referred to a Neurologist who first tested for other potential problems including Parkinsons, MS and Polio. I was diagnosed with polio when I was 5 years old back in the 50’s, it is now questionable whether this was the first indication of MD. The neurologist as a last resort sent blood samples for genetic testing, that proved positive for FSH MD. MDUK is currently engaged in providing better training facilities for GP’s nurses etc.

    Pam Skingle – Advocacy Ambassador
    Participant
    Posts: 0
    Joined: 11/08/2016
    #136391
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    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?

    JoelR JoelR
    Participant
    Posts: 0
    Joined: 01/12/2015
    #136392
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi Joel

    Since my specialist got involved I do feel that I have had a lot of support. Local support in the main has come from Rehabilitation Unit at Lincoln Hospital. I even have Neuro-physiotherapist come to my home once a month. I have had this for nearly 2 years now. My neuro-physio also provides feedback to the rehabilitation team on my changing condition.

    Pam Skingle – Advocacy Ambassador
    Participant
    Posts: 0
    Joined: 11/08/2016
    #136394
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi David,

    We have indeed identified a lack of care advisor support in London and the South East and are working to campaign to make sure that care advisor and specialist nurse roles are in place across the UK. We have recently launched a report that details a bit more about this that you can read here: http://www.musculardystrophyuk.org/news/news/new-report-finds-lack-of-vital-care-advisor-support-in-london-and-the-south-east/

    However, in the meantime, while we are continuing to push for these roles to be filled, our care and support team would be happy to see how we can help!

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #136395
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi Joel, not really been supported, you have to push yourself forward, attend Muscle groups, support groups etc to et answers. Plus you don’t always have the answers.

    David Morgan
    Participant
    Posts: 0
    Joined: 15/08/2016
    #136396
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    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?

    Anonymous
    Inactive
    Posts: 0
    Joined: 01/01/1970
    #136397
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    As Shivani said we are pushing to secure new roles across the country to accommodate the gaps in care. To read a bit more about care advisors please do click the link.

    Pam have you been able to speak to a care advisor in your local area or is there another person at Lincoln Hospital who has been able to offer support?

    JoelR JoelR
    Participant
    Posts: 0
    Joined: 01/12/2015
    #136398
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    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.

    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
    #136400
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Joel
    Whilst there is a care adviser for my area I only see her when I attend Muscle Group Meetings in Nottingham, otherwise I have no other contact with her. Maybe I am to far away being in Lincolnshire. However my neuro-physio acts as my care adviser who we have found to be very helpful and proactive.

    Pam Skingle – Advocacy Ambassador
    Participant
    Posts: 0
    Joined: 11/08/2016
    #136401
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    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.

    "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
    #136402
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi Pam,

    I’m sorry that you don’t have more contact with the care advisor, but I’m glad that you’re getting the right support. Do you think you would find it helpful to speak to the care advisor outside of the muscle group meetings as well?

    Do you have any tips or advice for people to make sure they are getting the right support?

    Muscular Dystrophy UK staff member

    Alexa Follen
    Moderator
    Posts: 32
    Joined: 12/05/2015
    #136405
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    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.

    "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
    #136407
    Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August

    Hi Shivani
    I am not sure that I would get any better support than I am getting through the Rehabilitation unit at Lincoln Hospital. However I would say that someone says they will contact you at home and doesn’t is not acceptable. Reading other discussion this afternoon communication seems to be a major point. It was something that Keith and I raised when we first got involved with MDUK and there have definitely been moves in the right direction but appears still not to be reaching people.
    With regard to advise for others I definitely benefited from taking an active part in MDUK by attending conferences, muscle groups etc. The benefit of going to these activities is you really speak to people and get a better understanding. Talking with people is defiantly a better form of communication than modern methods. At least you can find out what help other people have had the problems encountered and take this away to act on yourself. Unfortunately whilst it would be nice if everything was readily available the fact of life is that this rarely ever happens. As one doctor said to me “he who shouts loudest gets heard”

    Pam Skingle – Advocacy Ambassador
    Participant
    Posts: 0
    Joined: 11/08/2016
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