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

[PumpkinP]

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.

Sickle cell disease is on the list but sickle cell trait isn’t. I think that’s been a common issue with the letters and a lot of sickle cell trait patients have been coded and subsequently told they don’t need to shield. It must be v scary for you.

Just to stress - I’m involved with this via work but I’m not in any way clinical!

GP here. The original lists were complied by NHS England based on coding extracted from GP records. However, some of the codes would no longer have any medical relevance but were sent out in bulk at an early stage to avoid delay. For example, I was put on the original shielded list because of a condition I had as a child, but am now a fit and healthy adult. I asked my GP to remove me which they did.

GP’s are now being ask to look through the list but given a ridiculous turnaround time as usualand find people who don’t need to be on it then remove them. I imagine your GP has checked her notes and taken her off the list.

Yes it’s a shame you were worried sick, and I understand that you are annoyed at potentially having to stay inside for a few weeks when that’s very difficult for your child to take.

However, sometimes things just have to be done as quickly as possible, and to hopefully protect as many potentially extremely vulnerable people as possible, until such a time as a viral pandemic with various strains is better understood...

You’ve got through it and so has your child. Sometimes things are tough. Freaking out about it when hindsight shows it might not have been necessary seems rather pointless, that’s all.

If what you’re actually saying is that you’re more confused and worried than you were, now, then why don’t you check the shielding criteria on gov.uk or on nhs website and make a judgement for yourself on what you want to do. Alternatively you could call your GP and ask for clarification as to your daughter’s specific case.

Just to say, extremely vulnerable people don't HAVE to do anything. They're advised to shield but it's not mandatory. Like so many things, it's lowest common denominator advice. I'm on the borderline of being extremely vulnerable (fall in the gap between vulnerable and that; by the letter of the law, I probably should be extremely vulnerable) but I'm also capable of making my own informed decisions about the risks I deem acceptable to my own health. I have discussed with my consultant and he agrees with me. I don't go out unnecessarily (ie I don't go out for walks every day) but I still go shopping and mix with my family. My DF is similar. I'm very much pro lockdown and social distancing but being vulnerable hasn't removed my powers of critical thinking.

Mix with my family = the ones I live with (DH and DS). Not the wider family!

I understand now they just must have seen sickle cell and acted on that with the time they were given. Was just shocked to get the text I feel better now and dd will be very relieved she can go for a walk!

🌷🌷🌷 I’m sorry if I came across harshly.

Hope you and your daughter enjoy your walk today! 🙂

It would concern me too. My DF has COPD but because it's not yet severe, apparently he's ok to be doing his very physically demanding factory job at present. Luckily for him, in this respect, he's zero hours so at least he can't be made to go in. I don't trust the shielding criteria at all on the basis that if my DF did catch Covid I'd be less than confident that he'd survive.

I can understand your emotions but I don’t think this is a case of flip flopping so much as them being over cautious to ensure they’d caught everyone and then going over again in more detail. There’s little info for them to use and this escalated quickly. So I think you’d be highly unlikely to be told to shield again.

All the best to you both!

Just like everything with this virus the government seem to be playing catch up

So you'd rather they'd have delayed the letters by a couple of weeks so all 1.5 million peoples' records could be reviewed manually, than sending out a blanket letter to them all with the intention of reviewing them later? Sometimes things have to be done quickly. Checking records of 1.5 million people isn't something you can do in your lunch hour!

Thank you Ninkanink

That sounds worrying MyHipsDontLieUnfortunately the shielding criteria is very strict.

Dd doesn’t like to use the garden as the neighbours are too loud (she’s very sound sensitive) so I was worried about her MH being in for 12 weeks, we live by a nice big common so will take her for a walk as soon as we can, it’s raining today, typical! So maybe tomorrow.

The congenital anaemia group agree that the advice for sickle cell patients was muddled and that in some cases, the wrong people were sent the shielding letters.

In a time when people panicked because of the unknown, great swathes of people were sent guidance letters, some of whom are not in fact in the extremely vulnerable category. Equally, a large number of people who should have received the letters, didn't.

The situation is now slowly being reversed / resolved, but like all things it is taking time.

Wow that is a big mess up by the hospital. This is a disease more prevalent in Afro-Caribbean and to some extent Mediterranean people so I doubt most people will have a clue about it.

A large percentage of African people specifically west Africans have the sickle cell trait however it is a recessive disease meaning both parents need to have the gene and pass the sickle cell trait into their child for their cicely to have sickle cell disease.

I agree now that I’ve calmed down better safe than sorry!

Most people with the trait will never really experience any effects and it will just be a dormant gene they carry however people who have the disease have the full blown disorder with pain crisis and so on.

I am really shocked the doctors office made such a glaring mistake there is a huge difference between carrying the gene and having the disease. OP I’m glad your DD doesn’t have to shield but I understand the upset.

That's good news op. You must be pleased.

I had her when I was 21 and her dad has the trait, I looked into it at the time but from what I read it was just the genetics, and not the actual disease so I completely forgot about it as dd is so healthy, so when the letter came back I though I had misunderstood it from years ago!

I think the trouble us there will be similarities in the code for sickle cell and sickle cell trait and some people will have been coded when coding was less accurate...the codes may only be a digit or letter difference.
It's not that the doctors office got it wrong it's that central government extracted the data from our records, maybe putting a less exact code in and sent letters to anyone with a sickle cell diagnosis...as a GP we in Scotland got these lists only in the last few days so along with phoning ill patients we are having to find the time to go through hundreds of records to check the accuracy.
Please be patient...this situation is very difficult..we are getting lots of phonecalls asking if people should be on the list or why they haven't got their letter as many people don't understand it's only the very vunerable who are getting the letters.

Same thing happened to me. I got the shielding letter weeks ago and received a phone call from GP a couple of days ago saying that my asthma wasn't considered severe enough.

To be honest I'd assumed my inclusion on the shielding list was a clerical error anyway so had been going out daily, practicing social distancing of course. It was still a huge relief to get it confirmed by my GP though!

@PumpkinP yes you were right at the beginning it’s just a genetic thing she would be completely healthy.

There must have been an error in the data or her records were made wrongly.

Many in my family have the trait and they are perfectly fine, it’s just having the full blown disease that causes health problems.

DH had the letter telling him to stay indoors (he has asthma). He stayed home for 2 weeks and rang his GP as his blood pressure was getting high with anxiety. His GP told him he could go back to work if he was very careful & kept to social distancing (he can do that safely with his work).

OH got a shielding letter, he has pulmonary sarcoidosis and next to no immune system, awaiting immunotherapy. He didn’t get his letter via GP came from his consultant at the Brompton hospital

I think it's important to understand what 'shielding' means. It is the people for whom getting the virus is likely to have the worst outcomes, Those in Category 2 ie over 70's, flu jab people are likely to not have a great outcome. The rest of us will likely be OK even if we get it.

But the key is the word likely. Noone really knows. there was a lady 106 released from hospital yesterday, there are perfectly healthy people dying. It's all a numbers game. If you and your daughter were managing fine shielding and had systems in place just carry on doing that and that will minimise your risk just as it would for anyone who cut them self off from all outside contact.

Why do you need advice? Surely you know your child and their medical needs best?

What's the difference between sickle cell and sickle cell trait?