Forum Replies Created
June 27, 2018 at 10:22 am #159345Reply 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/.June 19, 2018 at 9:50 am #158953Reply To: South East Care Pathway Co-Ordinator.
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 email@example.com. 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 firstname.lastname@example.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.
JoelJune 11, 2018 at 3:08 pm #158088Reply To: Bone Health Q&A with Dr Wong
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.
JoelMay 4, 2018 at 11:52 am #156360Reply 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.January 10, 2018 at 9:57 am #153779Reply To: PIP Assessment – Neuromuscular
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 email@example.com to see how they are able to assist.
JoelNovember 30, 2017 at 4:03 pm #153177Reply To: Central Core Disease – got some info but not sure what prognosis is
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 firstname.lastname@example.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/
JoelNovember 16, 2017 at 1:11 pm #152777Reply To: MDUK Adaptations Q&A – 16 November
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.
JoelJune 8, 2017 at 3:07 pm #150025Reply To: HELP!!!!! i dont know where to turn
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.
JoelMay 23, 2017 at 3:15 pm #149719Reply To: Hello :)
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 email@example.com and I would be happy to speak about both this network and the Duchenne Family Support Group.
Joel.April 19, 2017 at 12:56 pm #149230Reply 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 firstname.lastname@example.org and I will see if I can set something up.
JoelJanuary 4, 2017 at 12:07 pm #146135Reply To: husband w/ beckers muscular dystrophy
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 email@example.com and I can organise this.
JoelSeptember 23, 2016 at 4:08 pm #138359Reply To: Don't Forget Your "FLU JAB"……..
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.aspxAugust 19, 2016 at 3:23 pm #136586Reply To: Hello from your Advocacy Ambassadors
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 firstname.lastname@example.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/August 16, 2016 at 1:31 pm #136421Reply To: Support with late onset conditions: Live Q&A on Tuesday, 16 August
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.August 16, 2016 at 1:05 pm #136408Reply 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?August 16, 2016 at 12:36 pm #136397Reply 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?August 16, 2016 at 12:13 pm #136391Reply 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?