March 29, 2020 at 9:58 pm #186787111
hi we have a 3 year old with muscular dystrophy (Duchenne) we called 111 for advise as I work in a hostel working with people who are drug users, alcoholic’s and have mental illness ,they don’t isolate and its hard to keep to the 2m rule, 111 stated that we should all self isolate for 12 weeks but you can not get a note for work as the government states so that you will get paid, does anyone have any advise /direction, we have not received high risk letter from our GP either (we will be chasing this in the morning) but this suggest that his condition is not high riskMarch 30, 2020 at 1:05 pm #186790Reply To: 111
Hello Bill, this is indeed very difficult situation for you. Many of us on here have not received the high risk letter, despite many of us being at high risk. FOr example I have only half a functioning lung and it is thought two muscle wasting conditions as well as diabetes. The reticence to send out these letters may well be the lack of understanding that the powers that be have about MD and its influence on the human body.
Might I suggest that the first step should be to talk this matter over with your HR department as they have a duty of care to you in this and all situations, and possibly your union if you are in one. May I also suggest talking to your GP directly rather than wait for the “letter” to arrive, if it ever does.
You may also want to talk to the Helplines here at MDUK as they will have lots of experience with Duchenne, and no doubt now, the virus.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015March 30, 2020 at 1:31 pm #186792Reply To: 111
Thanks Mike for you reply and support, we were up until 3.30 this morning waiting /receiving calls from 111, the last one said that he is a high risk and that he will email our GP advising him that I need a letter for work, I have to call the GP again later to sort it, if that fails we gave a video call booked in the consultant tomorrow fingers crossed we will be sorted, if not I will take up your advise.
As we are new to this can I ask from your experience what support is given to a 3 year old with MDD, as we don’t want to go months down the line and somebody saying o you could of asked for that months ago
Just to make you aware the little man is a looked after child BillMarch 30, 2020 at 7:07 pm #186801Reply To: 111
Well it just get worse, called GP they said that 111 have not sent an email to advise them but even if I he did, they now don’t issue the note for my employer,its the job of 111to do, call back to 111 who have now changed, well the operator that I spoke to has, I had to complete the 2 week self isolate form stating that he has symptoms, which is not true but as that’s their instruction that’s what I have done, so he is safe for 2 weeks god knows after thatMarch 31, 2020 at 12:59 pm #186804Reply To: 111
It is not getting easier is it? It seems like there is a good dose of buck passing here. I remain concerned that they are telling you effectively to lie to get something to which you should be entitled if the medical evidence is sound enough. I may be wrong but I get the impression that 111 are not fully understanding the situation.
You can fight this going back and forth between the two for some time, but you need good professional advice. Thus I would suggest that you talk to your union if you are in one , failing that talk to a solicitor. The cost of that may be covered through the likes of the AA, or household insurance, who often have legal schemes attached to their policies.You can try 111 for a third time, and see if you can get a confirmation of the recommended action , or indeed a third option.
The advice from Unison can be found here https://www.unison.org.uk/coronavirus-rights-work/, and of course the useful contacts above by my fellow moderator, are essential to use if you are going to make progress. I would also encourage you to talk to your employer who has a duty of care to you for both physical and mental health. It is clear that the situation will be extremely stressful for you and you may be surprised at what they can offer. I would also suggest trying to get some support from the Neuro unit that your son attends, or has attended. They may not be operating as a unit but the staff will be available to help with telephone calls or emails.
If none of those gives you an honest answer then do please come back to us. as you say you have a couple of weeks grace at the moment. I do understand how you feel about this to some extent. My wife works in A&E and comes across all sorts of folk including like those you have described. From my point of view I would not for one moment , suggest she gives it up but it is a worry for me if she were to bring it home.
AS to the other point. you mention about making sure your child gets the best possible care, I believe your last sentence says it all. Regardless of the difficulties that you will face it appears from that sentence that you will do all in your power to keep him safe and well. What more cold he want? My child was not diagnosed until he was around fourteen, so I cannot advise what it will be like for a three year old. Pretty much since that time both he and I have been left to our own devices, and to try and find help when it was needed. on the MDUK help lines, on this forum and even on Facebook, there are some tremendously helpful and knowledge people who can us ually guide you in the correct direction. You will learn much along the way, especially that you need tenacity and perseverance. You clearly have those traits in good measure. WE will be here for as long as you need us.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015
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