Vulnerable groups

[Greengarden]

Is MSA on list of vulnerable groups?

[Yanno]

Hello there, whilst I’m no expert on these matters I do know that your doctor would’ve been asked to supply a list of vulnerable people. I would be horrified if somebody with MSA was not added onto the list.

Jackie hasn’t received her letter yet but I suspect Royal Mail is having its own issues staffing at the current time.

I would wait until others have received the letters and then I think there’s going to be a well-publicised route to get your name added to the list.

Hope this helps, take care, Ian

[Greengarden in reply to Yanno]

thank you very much

[markeccles in reply to Yanno]

Hello if you apply on the gov website it now says or instead of and which changes the meaning some what check out the MSA website or email your movement disorder clinic

[Rafaina]

I’m not sure it is - the list is v specific .

[Greengarden in reply to Rafaina]

The list includes: 'People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell)' so I was wondering if this would cover people with MSA?

[Yanno in reply to Greengarden]

We will soon find out!

[Rafaina in reply to Greengarden]

I wasn’t sure if is was ‘people with rare diseases and inborn errors etc’ or ‘people with rare diseases’ and ‘people with inborn errors etc’

We will just have to wait but I really hope it is included.

[IvyRose64 in reply to Rafaina]

The list I read said chronic neurological disorders so would assume MSA falls under that category

[Rafaina in reply to IvyRose64]

If you google extremely vulnerable on the government site you will find the list - I am still not clear. A previous list of vulnerable groups definitely included MSA

[FredaE in reply to Rafaina]

Remember .......Never take no for an answer....is oneof the first rules for MSA patients. MSA and all the other rare diseases are still unfamiliar to the people compiling the list and everyone is learnng as they go along. We must make sure it gets on the list if it is not yet covered.

[Rafaina in reply to FredaE]

I understand GPs are not identifying people - presumably consultants

[ChocolatePot]

I don't think MSA is on the list. I would assume a lot depends on how far down the line you are as everyone is on a individual journey? My hubby is not on the list and for this little stressed brain, that was a relief! Told him he is fragile not vulnerable and got a little smile in return.

[SamanthaMSAT Moderator Staff]

Hi Greengarden,

At the moment "vulnerable" applies to those who have reduced immune systems, such as people with Cancer, those undergoing radiotherapy or chemotherapy, or having had an organ transplant and some genetic illnesses.

MSA isn't included, but anyone with MSA is considered high risk, so please take all precautions to remain safe and well.

We ae updating our website regularly with advice, so do have a look on there:

msatrust.org.uk/support-for... and do contact the nurses if you need advice.

Kind regards,

Samantha, MSAT nurse.

[Greengarden in reply to SamanthaMSAT]

Many thanks, Samantha

[SamanthaMSAT Moderator Staff]

Please see our latest advice on the MSA Trust website today.....

msatrust.org.uk/support-for...

Kind regards,

Samantha MSAT nurse specialist.

[ozmarlz]

I applied on the Gov.uk website a couple of weeks ago to be listed as Extremely Vulnerable, now although I haven't directly from the Gov direct, I have received an email from Sainsburys telling me I have been recognised "The government has identified you as someone who is extremely vulnerable to coronavirus, which is why we’re contacting you." So don't give up, there is a chink of light.

Keep up the fight.

Regards

Ozmarlz

[IvyRose64 in reply to ozmarlz]

That's good to hear, when I went on Sainsbury's they said I wasn't on the list but it's my hubby who has MSA. I;ll try again using his details to log in.