so having MS does not make us vulnerable unless we have one of the diseases on the list. the fact i cant go out means tough isn’t it and i am not entitled to priority slots on supermarkets.
this is the list.
have had a solid organ transplant
have any cancer and are getting chemotherapy
have lung cancer and are getting radical radiotherapy
have cancer of the blood or bone marrow, at any stage of treatment - for example, leukaemia, lymphoma or myeloma
have any cancer for which you’re getting immunotherapy or other continuing antibody treatments
have any cancer for which you’re getting a targeted treatment which can affect the immune system - for example, protein kinase inhibitors or PARP inhibitors
have had bone marrow or stem cell transplants in the last 6 months, or are still taking immunosuppression drugs
have a severe respiratory condition - including cystic fibrosis, severe asthma or severe COPD (Chronic Obstructive Pulmonary Disease)
have a rare disease or inborn error of metabolism that significantly increases your risk of infection - for example SCID or homozygous sickle cell
are getting an immunosuppression therapy that’s sufficient to significantly increase your risk of infection
are pregnant, and have a significant congenital or acquired heart disease
So basically go and starve.
IF I HAD BEEN eligible for Ocrevus not sure i would have still been on the list. so as i am at the end of my disease i have no help.
yes I’ve just looked at this too and you’re right, but what gets me is that I can’t book a delivery slot with Sainsbury’s because I’m not deemed vulnerable, even though their list says disabled people ? even though when I had a chest infection it did floor me, one minute we’re vulnerable, the next we’re not.
I think on the home page it was updated yesterday and is as crazy chick says, it mentions certain drugs but if your not then obviously Follow government guidelines is how I take it so you’re allowed to get essential shopping if you’re able.
does not make no sense. so this was sent to all surgery 21march. we are on the vulnerable list.
On Monday 16th March the UK government announced a package of measures, advising those who are or may be at increased risk of severe illness from COVID-19 to be particularly stringent in following social distancing measures.
This group has been identified to the public as those who are: • aged 70 or older (regardless of medical conditions) •
under 70 with an underlying health condition listed below (i.e. anyone instructed to get a flu jab as an adult each year on medical grounds):
• chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
• chronic heart disease, such as heart failure
• chronic kidney disease
• chronic liver disease,
such as hepatitis
• chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS),
a learning disability or cerebral palsy
• diabetes
• problems with your spleen –
for example, sickle cell disease or if you have had your spleen removed
• a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy • being seriously overweight (a BMI of 40 or above)
Has anyone managed to get definite answer from their neurologist, obviously their inundated with calls making it very difficult to get through. My OH is type 1 diabetic and asked the nurse at his practice who didn’t know!
So I just phoned my MS nurse to try and find out what’s going on, as like you crazy chick I’d seen this as well, she will hopefully ring me back and if she does I’ll let you know. x
So my nurse just called me back and to be honest she’s in the dark like us, said it’s very confusing, she’s seen the lists like we have and doesn’t know if we’ll get a letter or text, she said she’s knows a few to get it, she said it’s not only those on certain DMD’s, it’s all of us, so once again we’re in the dark. I did ring my surgery and ask them who would get the letter, they told me that the govermewnt access their data base and get the ionfo they need from there…so watch this space.
My Question: “I’m very confused with this vulnerable or not vulnerable thing, so can you help, am I vulnerable or not” ???
Answer : “Vulnerable, because if you picked up the virus it could, and most probably would, either bring on a relapse or a flare-up, just like any other virus or infection, so you would be classed as vulnerable/ shielded group”
My next question was, “But I’m not on any type of DMD”
Answer : “But you are still vulnerable simply because you have an underlaying illness, MS, that could be effected, if you were to pick up the virus”.
My Next Question : " So am I more likely to pick up the virus because I have MS"
Answer : “NO, you’re not at greater risk of picking up the virus**,** however, if you were on certain DMD’s, then you could be at greater risk, and even more vulnerable as your immune system is dampened down if that makes sense”
“Yes, thank you bye”.
End of phone call.
Dare I say, someone will get a different response/reply !!!
I am definitely on the original list, I have chronic bronchitis, I also have MS. I have been receiving flu jabs regularly from the NHS for free for the last five years.
We were on the list of special people but now there is a list of very special people (1.5 million) this list must have been compiled by using information provided by our GPs.and seems to only contain a very limited number of conditions.
like others, I attempted repeatedly over an 11 day period to find a delivery slot on the Sainsbury’s website, there was nothing available in either week one and two or three on any day that I tried, and I tried every day, then came the announcement that they were reserving their delivery slots for vulnerable people, still there were no delivery slots available and no way to add yourself to a list of vulnerable people, then once more a further announcement came that only people who are classed as very vulnerable i.e. very special and people over 70 years old would be allowed to book delivery slots, what makes them think that someone who is over 70 is automatically at more risk and more vulnerable than someone younger, they may have been in their youth an Olympic class athlete, where someone in their 40s or 50s that may have underlying conditions that are not on their list is far more likely to die from this virus, every day they announce how many people have died from this virus in the UK saying the age range of those who have died and the statement will always end with “most of those had underlying health problems” but once more if you are of working age you’re kicked in the teeth.
Facing my block of council flats is a very expensive, relatively newly built estate of luxury apartments, this week we have seen supermarket delivery vans repeatedly pulling up to make deliveries there, is there a postcode boycott as I have also been unable to get delivery slots from any other supermarket that I have an account with including Tesco’s and Asda.
talking on Numbers if supermarkets deliver 14 hours a day seven days a week roughly 2 deliveries per hour and have maybe 50 delivery vans at our local depot, that’s over 8000 deliveries per week. I very much doubt that people are shopping online weekly unless they have dependent children which would eliminate most people over 70 from needing weekly deliveries, and when you add the number of people who live in one single catchment area who fall into the very special people bracket there cannot be 8000 deliveries needed each week
I really do not understand why they cannot extend to include those people who like us might be self isolating, or free up some of the delivery slots for those like us that are not classed as very special people, just vulnerable. I know it would be a free for all but could they have not given those like us one day a week and extend their delivery slot booking periods from 3 to 6 weeks, at least We would know in five or six weeks there would be something coming our way so all I we have to do is top up here and there.
It’s pretty clear cut really, especially when you think about MS and how even a mild virus can have such a big effect on MS symptoms !
DMD’s or not, catching this or any other virus/infection is bad news for MS’ers.
We all know that this virus is a nasty life ending b*****d, and is highly contagious, we also know that catching any form of virus/infection is not good at all when you have MS, so what’s the confusing bit ?
The confusion is because there are 2 parts to the list we are on the fist part of the list with MS as HIGH RISK and then it goes on to say that there are others at EVEN MORE HIGHER RISK which are people who have had an organ transplant,people with cancer on chemo,people with cancer of the blood or bone marrow,people with cystic fibrosis or severe asthma,people with kidney disease.So us with MS are on the high risk list but not on the EVEN HIGHER RISK list,
Sue people are not reading the list properly i have put this on here loads of times the past few days.I got the list from gov.uk and printed it off and read it several times before it sank in.It is very confusing at first though.
LOL now i have a headache. ok on the NHS list we are classed as a vulnerable.
the NHS wrote to all surgeries with the list and we are on this list for that letter.
THIS IS THE TEMPLATE letter going to surgeries now.
the gov are using this as their template hence the reason why i am not in the vulnerable list for HIGH RISK of catching the disease which means in a way i am less likely to get it therefore are not going to be a drain on the NHS at this time.
Hope this actually clears it up.
so yes we are vulnerable but not on the high risk group which is how you get the slots. as the people on the list to go out would make them at high risk of catching it.
so basically the fact you have MS and cant go out because you are disabled as no bearing on the matter your not at risk of getting it.
according to NHS we are in the vulnerable group but to get priority you have to be in the HIGHER RISK group which is the list i put up.
although we have MS WE are not considered at high risk of catching the virus, and therefore not as likely to put a strain on the NHS if we get it. where the high risk group are.
but it doesnt take into account that if i could go out to do my shopping i am allocated a slot between 9 and 10 as i am in the vulnerable disabled group. and we wonder why we get confused.