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Viewing 20 posts - 1 through 20 (of 23 total)
  • #159345
    Reply To: Bone Health Q&A with Dr Wong

    Our Q&A summary can be viewed on the website which includes answers to all the questions posed here and elsewhere: https://www.musculardystrophyuk.org/news/news/bonehealthqa2018/.

    JoelR JoelR
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    #158953
    Reply To: South East Care Pathway Co-Ordinator.

    Hello,

    There is unfortunately no South Care Coast care advisor currently. This is something our neuromuscular outreach team are working on with CCG to get roles funded.

    In the mean time I would encourage you to contact one of two places. If you are based at King’s College Hospital for you muscle clinic under either Dr Norwood or Dr Rose then feel free to contact me directly (Joel Rackham) as I work alongside this clinic supporting in a similar way to Pammy and Neeru have done in the past. My email is j.rackham@musculardystrophyuk.org. Should I be unavailable you can follow advice below as well.

    Alternatively if you are in the South East and do not attend this clinic or are in another area without a care advisor I would encourage you to contact our helpline through either 0800 652 6352 or info@musculardystrophyuk.org. We do have an advocacy team who are able to support with various things, and we always try our best to find any information you may need.

    Kind regards,

    Joel

    JoelR JoelR
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    #158611
    Reply To: Bone Health Q&A with Dr Wong

    Hi embayweather,

    Thank you for your question, and please do submit any more between now and the 21st. I have also put these in the Facebook Q&A.

    Joel

    JoelR JoelR
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    #158331
    Reply To: Bone Health Q&A with Dr Wong

    Hi Catatude,

    I will make sure these are answered. Thank you for sending over!

    Joel

    JoelR JoelR
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    #158088
    Reply To: Bone Health Q&A with Dr Wong

    Hi embayweather,

    Unfortunately this is Facebook only however we always publish the summary of the our Q&As as news stories on our main website. This usually occurs a few days after the Q&A takes place. I would encourage you to leave a question here and I will ensure Dr Wong is able to answer this on the day. I will highlight when and where you can see an answer to your questions by commenting on here shortly after the Q&A has taken place.

    Best wishes,

    Joel

    JoelR JoelR
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    #156360
    Reply To: Pain Relief

    There are a number of ways to address pain relief and the best option in the UK is to speak to your medical professionals about this. Although there is provision for medically prescribed marijuana in other countries it is currently considered a class B drug in the UK and is illegal. Therefore Muscular Dystrophy UK does not recommend its use.

    JoelR JoelR
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    Joined: 01/12/2015
    #153779
    Reply To: PIP Assessment – Neuromuscular

    Dear Ranald,

    embayweather is correct, assessors must have a health background but this very rarely results in experience with neuromuscular conditions. Nurses and paramedics are common, I would recommend bringing information about your condition in case they are unaware of what it is.

    Please do also consider contacting our advocacy team, they are able to help with applications for benefits and provide advice about face to face assessment. Email them on info@musculardystrophyuk.org to see how they are able to assist.

    Joel

    JoelR JoelR
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    #153177
    Reply To: Central Core Disease – got some info but not sure what prognosis is

    Hi rsrehal,

    I work at Muscular Dystrophy UK, thank you for your post. We actually have one person in our peer support network who has the condition, I could see if they would be happy to contact you or your friend to discuss their experiences. Additionally we do have information about inheritance of the conditions we support which you can access. It is probably best to discuss this with a genetic counselor and a health care professional in regards to options when starting a family. Please do email info@musculardystrophyuk.org if you would be interested in speaking with anyone and we can organise this.
    Peer support: http://www.musculardystrophyuk.org/get-the-right-care-and-support/people-and-places-to-help-you/someone-to-talk-to/
    Inheritance: http://www.musculardystrophyuk.org/about-muscle-wasting-conditions/information-factsheets/diagnosis/

    Joel

    JoelR JoelR
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    #152777
    Reply To: MDUK Adaptations Q&A – 16 November

    Hello Catatude,

    If you leave a question below on here I can either ask it when the Q&A goes live at 2pm today or following the Q&A I will ask Demelza to respond to you. Either way I will draw your attention to an answer once posted.

    Joel

    JoelR JoelR
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    #150025
    Reply To: HELP!!!!! i dont know where to turn

    Hi Pauline,
    Please do call our helpline team on 0800 652 6352 who will be able to talk you through what support may be available as well as being able to find someone to speak to.

    Joel

    JoelR JoelR
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    #149719
    Reply To: Hello :)

    Hello Lisa,
    Muscular Dystrophy UK also has a network of peer support volunteers, and we have plenty of parent’s for Duchenne and a few for Becker too. Please do email me on j.rackham@musculardystrophyuk.org and I would be happy to speak about both this network and the Duchenne Family Support Group.

    Joel.

    JoelR JoelR
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    #149230
    Reply To: Fear of Falling and depression

    Hi Colin, pleased to see you have found the forum. As you can see we have a great community here, as well as this if you did want to speak to others with IBM please do email me on j.rackham@musculardystrophyuk.org and I will see if I can set something up.

    Joel

    JoelR JoelR
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    Joined: 01/12/2015
    #147339
    Reply To: Accessible Holidays: Live Q&A on Tues 7 February

    Don’t forget this is taking place today at 6pm. Don’t miss it!!

    JoelR JoelR
    Participant
    Posts: 0
    Joined: 01/12/2015
    #146135
    Reply To: husband w/ beckers muscular dystrophy

    Dear Snowball,
    At Muscular Dystrophy UK we do have a peer support network where you are able to speak to people who have the condition and have lived with it for years, much like on TalkMD. I am happy to contact one of our peer support volunteers who has Becker muscular dystrophy if you would be interested in speaking with them.

    Please do send me an email on ambassadors@musculardystrophyuk.org and I can organise this.

    Joel

    JoelR JoelR
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    #138359
    Reply To: Don't Forget Your "FLU JAB"……..

    Hi everyone,

    I advise everyone to have a look at this page if they are unsure if they should be getting a flu jab: http://www.nhs.uk/Conditions/vaccinations/Pages/who-should-have-flu-vaccine.aspx

    JoelR JoelR
    Participant
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    Joined: 01/12/2015
    #136586
    Reply To: Hello from your Advocacy Ambassadors

    Hi Maryhazel,

    Great to hear from you, your experience sounds like a great example of a really beneficial aid in your mobility scooter. Would love to hear a bit more about some of the travelling you have been able to do! If you ever wanted to talk to someone who is in a similar position we can put you in contact with a peer support volunteer or an advocacy ambassador.

    Just email ambassadors@musculardystrophyuk.org for further information or visit their page: http://www.musculardystrophyuk.org/get-the-right-care-and-support/people-and-places-to-help-you/advocacy-ambassadors/

    JoelR JoelR
    Participant
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    #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
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    Joined: 01/12/2015
    #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
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    Joined: 01/12/2015
    #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
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    Joined: 01/12/2015
    #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
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    Joined: 01/12/2015
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