I am becoming increasingly frustrated at the inconsistent interpretation of who should & should not be on the shielding list (very different from the vulnerable list). Early on, everyone with MS was listed as being vulnerable and should thus take extra care with the social distancing recommended to the general public…this was not the shielding list, though was initially misinterpreted by the majority of the population (and to some degree still is) AND the media, who implied anyone on this early list was to stay at home for 12 weeks; this was incorrect, that list of people are not intended to self-isolate, just to practice increased social distancing. The Shielded list is now being compiled and the categories of those affected published. The ABN has compiled guidance for those with neurological disorders and this is being used by the govt to compile this list. Whilst I would not dare to question the decision making process of the ABN in assessing the risk of each drug, I do question that those with MS on DMDs who have a ‘moderate’ risk of increased chance of getting Covid 19 and ‘moderately’ increased risk of infection, should be on the list, not only those with ‘significant’ risk, especially when the term ‘probably’ and ‘probability’ is used throughout i.e best guess? According to that document, I am at ‘moderate’ increased risk of infection and complications but do have some co-morbidity issues. Many publications refer us to our GP in such scenarios (should we feel we should be on the list but aren’t) but it appears that GP’s cannot in fact add people to the list or write to them & declare them vulnerable. That leaves us relying on our neurologists or MS nurses, who seem to be unable to cope speedily with such requests as they are currently over-loaded. Then I come to the inconsistency of those interpreting the guidance & writing to patients and here I am not sure where the control or co-ordination comes, or if there is any. It would appear that some with MS and not on any form of DMD are receiving letters, as are some who are only on DMDs with low or medium risk (as determined by the ABN document dated 22 Mar and avail on this web-site). This inconsistent approach is wrong & needs addressing. Why do I raise this topic? I do so for my own situation and on the assumption I am not the only person affected. It may seem odd to actually WANT to be judged as ‘super vulnerable’ & in need of shielding, so why am I questioning this? The answer is simple…so I can get food & essential supplies! I don’t want or need a free box of basics from the government (though many may need this), I just want to be able to get an on-line delivery slot and without being ‘on the list’ you can’t, not even if you register yourself on the govt web-site as this is NOT the information shared with Sainsbury’s et al. I took the decision some 3 weeks ago to self-isolate on the assumption I was at increased risk to some degree…why wouldn’t I? I want to protect myself & the NHS. Even though I am not on the list I will continue to self-isolate but will soon need help getting supplies…I live in a rural area surrounded by the elderly or equally vulnerable for different reasons…I need a supermarket delivery slot! This needs addressing by the MSS, I know I am not alone in this issue.
I’m in a slightly similar situation, I was discharged by my neurologist as I could be monitored by my MS nurse unfortunately within 12 months she retired and was not replaced for another 18 months, I have never heard from the new MS nurse that was recruited over a year ago so now have no support.
I have not been out of the house since 5th March and want the antibody test as soon as it is available as I think I had it in February, however I have been told this week that there may be two strains if this is the case which one did I have? which one is the more deadly? which one is the more infectious? If I had one strain will it give me any protection against the other? If I follow social distance rules and thoroughly wash my hands of return wear gloves when outside so I don’t handle anything with my bare skin am I still at risk of contracting this virus?
When coronavirus started to become a problem in the UK the Prime Minister told people that there were folk who needed to be shielded but he was unable give any specific details at the time, eventually a list was compiled of very specific conditions adding up to a total of 1.5 million people of the 1.5 million people I’m pretty certain many of those have a solid support network in place from family from friends and from neighbours they will not all be dependent on supermarket home delivery or food parcels from HM government. These parcels have not yet been sent out to anyone we are also finding people who should be on the list for example Samantha Rinke who only has 50% lung capacity is not on the list and as this list is so very specific cannot add herself, she admitted that she is fortunate she has family, friends and neighbours who can be relied upon.
but what if you don’t have anyone that can be relied upon, my OH avoids responsibility and passes everything of importance onto me like a child (mummy do it for me) ordering and collecting his medication, booking health appointments for him, paying bills, shopping, domestic maintenance either gets done by someone else or doesn’t get done at all, he shops like a 9 year old (lots of cake, biscuits and treats I cannot eat) so I’ve been secretly rationing stuff like tea bags, breakfast cereal and milk so it stretches further. I am reliant on home delivery or dial a ride for supermarket shopping trips these are time specific and not guaranteed so joining the queue to enter the supermarket would not be possible for me neither would walking to our nearest supermarket for supplies, so I really need to know if going out is putting my life at risk.
Its so confusing all of it!! I am staying indoors for 12 weeks even though i am not on the shielding list.My partner is on the shielding list as he has a blood condition.So to protect us both we will stay indoors for 12 weeks as its advised for him at least.I can cope as my MS has left me virtually housebound the last 7 years.So i am used to staying in.He will not cope well at all though.It took me a long time to work out which list i was on and i know a lot on here were and are very confused by it all.At least with one of us on the shielding list we might have a chance of an online food delivery, of which i have been doing for years with no problem getting a slot BUT now i cant get one at all due to all this.
I’ve shopped primarily on line for the last 10 years a don’t get why all the supermarkets have no delivery slots anywhere? Have they taken the drivers in store to do other jobs? Sneaking the odd slot out to make it look good.
i agree!
If you type your town/city/borough and covid community hub into google, it’ll come up with what support is available to you locally. It is a list of county and local council support, that’s a portal for assistance or if you want to volunteer.
Good luck.
No appropriate help in my area! Even the posh flats opposite me have stopped getting home deliveries. I am by nature a patient person and would wait two or three weeks for a delivery from a supermarket or even longer if it was guaranteed, but there’s not even that option. As a left over from WW2 the British don’t like queue jumpers, but some areas are still able too book deliveries albeit with a wait. So why is there so much inconsistency from the supermarkets?