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Original poster

Told daughter needed to be shielded now told she doesn’t?!

120 replies

PumpkinP · 17/04/2020 15:29

What the hell!! So I got a letter a few weeks ago saying my daughter was extremely vulnerable and needed to be shielded for 12 weeks, I’ve now had a text to say they’ve “reviewed” her medical notes and have decided that actually she doesnt need to be shielding, what the hell is that about?! I’ve been worried sick about my daughter, now to be told they were wrong?! Has anyone else had this? I’m a lone parent so couldn’t leave the house at all.

OP posts:
user1497207191 · 17/04/2020 19:14

In any event, how the hell does anybody know if you have kept the shielded person in one room etc? Nobody can check?

I think you've got the wrong end of the stick. It doesn't matter to anyone else so no one else cares. It for the protection of the shielded person themselves - if they don't want to be shielded then that's their call - they're free to go shopping or go out for exercise, but they're responsible for taking the risk and consequences if they catch it.

maggiso · 17/04/2020 19:20

I’m sorry you were so worried about keeping your DD safe. It does sound as if the original list was inaccurate in places. Nether my learning disabled autistic son nor I ( with damaged lungs) were on the original list, so I guess it’s more accurate for GPS who know the patients to refine the list. I got my text today. I had assumed I was not quite vulnerable enough to be on the list.

TabbyMumz · 17/04/2020 19:30

Autism isnt on the list I dont think. It's only conditions that might be affected by Corona virus.

Original poster
PumpkinP · 17/04/2020 19:35

I think people are misunderstanding no I don't get benefits for being on the shielded list, it doesn't entitle me to extra money Hmm we had a good parcel twice but due to being vegetarian and dds autism we couldn't eat half of what was on there anyway, the letter said that if my daughter got it she would be more at risk of complications and more likely to be hospitalised I'm not sure why people think it's weird to be worried about that? I don't want to shield her as she has autism as I explained and it's been tough keeping her locked up for weeks, there is a reason why guidance allows people with sen to go out more often. I'm not sure what extra "benefits" people are referring to. Confused

OP posts:
MerryDeath · 17/04/2020 19:36

if your daughter has pre existing conditions i would be worried sick regardless of whether i'd had a letter saying one way or the other or not.

cinammonbuns · 17/04/2020 19:40

Goodness I really tried hard to explain the difference between sickle cell trait and disease but it seems people on MN don’t listen.

If you have the trait it is completely different to to having the actually disease you are simply a carrier and are really unlikely to have any symptoms at all except in extreme situations.

Original poster
PumpkinP · 17/04/2020 19:42

She doesnt!! She has the trait which isn’t a serious medical condition but as I said when I received the letter I thought maybe I had misunderstood what sickle cell trait is, no one in my family has it, I’m not the doctor!

OP posts:
TabbyMumz · 17/04/2020 19:46

,,"Goodness I really tried hard to explain the difference between sickle cell trait and disease but it seems people on MN don’t listen.

If you have the trait it is completely different to to having the actually disease you are simply a carrier and are really unlikely to have any symptoms at all except in extreme situations."

Weve already established that.

TabbyMumz · 17/04/2020 19:49

"no one in my family has it, I’m not the doctor!"
But either you or your childs father must have it? A quick google tells you all about it?

TabbyMumz · 17/04/2020 19:51

OP, they meant the benefit of a food box and food delivery slots, not monetary benefits. However, my understanding is that you can get them without a letter, you just register yourself.

Original poster
PumpkinP · 17/04/2020 19:52

The DOCTORS told me that my daughter has a serious condition that meant if she got Covid 19 she was More likely to suffer from serious illness and be hospitalised and your telling me I was suppose to say the doctor was wrong?! My daughter has no contact with her father, I had no reason to believe the doctors were wrong. Do people on MN just love an argument? I googled it when she was a baby and it said it was only the genetics so I put it to the back of my mind, until the doctor contacted me to say it was a serious condition, yet I’m wrong Hmm

OP posts:
Original poster
PumpkinP · 17/04/2020 19:54

See my other post on here. “Shielding but still no delivery slots” I literally posted the other day to say that even with the so called priority we are still unable to get any slots.

OP posts:
londonbrick · 17/04/2020 20:02

Shielding is a confusing word as many people think they are having to shield the person who is more vulnerable (and have to stay in too) when actually this isn't the case - although in this case OP probably would have to stay in as the vulnerable person is a child.

www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

TabbyMumz · 17/04/2020 20:02

OP, I'm thinking the doctors saw the words sickle cell and put her on the list, then on further investigation, realised its sickle cell trait, ie heterozygous, and just a carrier of the disease, so she then came off the list.

TabbyMumz · 17/04/2020 20:04

However, if she is heterozygous, she got it from you or her father. You seem to acknowledge that you know it's a genetic condition?

Original poster
PumpkinP · 17/04/2020 20:18

I know she got it from her father as it wasn't from me, I know it's genetic but I didn't know the Dr made a mistake, how am I suppose to know if the doctor didn't even know? , they are the professionals I'm going to trust them and take thei r word for it. Ex didn't even know he had sickle cell trait, I only found out when they done her blood test as a baby, he said he wasn't aware.

OP posts:
MyDcAreMarvel · 17/04/2020 23:06

@TabbyMumz That's not true. The person lives with them does not need to shield aswell.
Yes they do if it’s a child or someone you care for . The letter clearly says that if you can’t stay 2 metres away etc etc you must also shield.

LittleLittleLittle · 17/04/2020 23:06

OP unfortunately most doctors don't know about disorders that affect BAME people.

In regards to sickle cell trait most of the time it won't make a difference to her life but if she has a general anaesthetic, goes in a depressurised aircraft, wants to go mountaineering or wants to go deep sea diving there is an increased risk of death compared to other people. So it is important that you tell any hospital doctor and dentist.

Plus she needs to be careful not to have children with anyone else with an inherited haemoglobin disorder e.g. thalassemia.

Should add I have blood relations who are thalassemia or sickle cell carriers in my family. Plus I knew a guy, many years ago, who is a carrier ended up in hospital with a crisis when a aircraft he was in depressurised.

Original poster
PumpkinP · 17/04/2020 23:22

Yes the letter does state that i must stay away from her, obviously that’s very much impossible.

Well there you go even the doctors don’t know yet I’m having people saying I should have known?! Well you know what I trusted the doctors and the NHS over google, she’s had a GA before and I remember it being talked about then so I obviously knew it had some relevance , Covid -19 is new to everyone so no amount of googling would have told me it didn’t have any affect on her, I was going on what the letter stated. Which was if my daughter caught Covid -19 she would be at significant risk of illness and much more likely to need to go to hospital. That’s very different from “don’t worry must children are completely fine, it doesn’t really affect children” blah blah blah that people have been banging on about for weeks.

OP posts:
TabbyMumz · 18/04/2020 11:33

OP, it's a standard letter you received, and as a doctor on here told you, the initial letters that went out, were based on coding from gp practices. Its not that they didnt know about sickle cell. Once the gp looked at it more carefully, they spotted she only had the trait, not the full disease. Knowing that your daughter only had the trait, you could have rang the surgery when you got the letter, to query it. Anyway, it's good news that she isnt that at risk, so just move on from it now. This is such a massive new thing, and letters had to go out, so mistakes like this are going to be made. I really dont think it's a case of a doctor not knowing about the disease, it's quite a well known disease, I think it just slipped through the net.

TabbyMumz · 18/04/2020 11:35

"MyDcAreMarvel

@TabbyMumzThat's not true. The person lives with them does not need to shield aswell.
Yes they do if it’s a child or someone you care for . The letter clearly says that if you can’t stay 2 metres away etc etc you must also shield."

The government guidance doesnt say if you live with someone who is shielding, you have to shield too. You can still go out to the shops and work etc.

MyDcAreMarvel · 18/04/2020 12:12

@TabbyMumz do you have a letter? because I do so that is where I am getting my information from.

MyDcAreMarvel · 18/04/2020 12:19

@TabbyMumz If you can follow the guidance then you don’t need to shield, if you can’t follow the guidance because for example, the shielded person is a child that you can’t stay two metres away from, or you are providing personal care and need to touch the vulnerable person, then you must take the full protective measures and shield.
Please don’t give out dangerous advice- it could cost lives.

Told daughter needed to be shielded now told she doesn’t?!
Original poster
PumpkinP · 18/04/2020 13:45

I tried to call the go surgery many times and couldn't get through to them, but yes I'm the one in the wrong 😑 they should have known she only had the trait given the fact that they were the ones to diagnose her 🙄 but carry on insisting it was my mistake

OP posts:
MyDcAreMarvel · 18/04/2020 14:52

Op it wasn’t your mistake, you received a letter and trusted the nhs letter to be correct. Ignore posters criticising you.