Shielding chat continues - thread 2

[AuntieSocia1]

Shiny new thread for anyone shielding.

You can vent/moan/cry/chat/lurk whatever you need.

@Oaksideboard - we were told social distancing 'in line with current government guidelines' I pushed them on if that meant school and work and they said everyone had to make their own decisions but if we were comfortable then yes as long as where ever we are was sensible and complying with risk assessments etc.
The Dr did say "you're sensible, I know you're not going to walk into a busy supermarket or down a high street with DS but I also know you can't keep stuck indoors all summer."

So I have made my own interpretation of that as that we can go out for fresh air and to see people at a distance, I can work if my boss can accommodate it safely ( if not I'll stay as I am) and DD can go to school.

If anyone gets unwell or anything changes to show things are on the decline again, I will go back to lockdown without hesitation.

It must be extended in England, surely? I know Scotland are moving more slowly but I can't see England stopping it completely this early.

Has anybody received communication stating that they have been moved out of the shielding group ?

Radio silence for me so far @Pudding51

Luckily I have a hospital apt this wk so will ask the question.

I really thought Boris had said he'd update today. But not a thing. Hopefully sometime this week, but I'm not holding my breath.

Not heard anything about being moved out of the shielding group. Have they changed the categories? I keep missing information. I do have an appointment with my consultant on Wednesday (by phone) so will see what he says.

I've heard nothing since the beginning of the month when I got texts from the council and national shielding service; my original shielding letter either never arrived or went missing once delivered (other mail and parcels are disappearing before I pick them up from downstairs ). I'm hoping they'll text if I get kicked off the list..

I get that now @LucyTrainsDragons. Sorry for confusion. I read it at the weekend but with everything going on I sometimes get mixed up.

Re-the announcement from UKG, I’m with @kirstinm - deciding on shielding (who’s to do as well as how long for) must surely be a medical decision rather than a political one. It would be a very big thing to remove all the constraints at this point in any of the 4 countries. Surely too the medical advisors already know what’s to happen so they could have said so. Having said that, Idk who was at the briefing today apart from Dominic Raab? I hope you all hear soon.

Hi, never posted in here before, but read when it pops up in chat. Hope you are not all feeling too despondent that nothing was mentioned today for you.

I found this from NHS England dated 4th June, don’t know if anyone has seen it, but it seems like how some things will move forward. No dates given though, sorry!

Annex B is the most relevant bit - things like named care coordinator, personalised care plans. It also says that patients can only be added or taken off list by GP or specialist, not the national algorithms.

DH completed a course of radiotherapy last week for lung mets, he was told by consultant to shield for a further 3 months.

WwMlLd that link confirms my previous post that the review is the week commencing 15th June, not necessarily on 15th June.

@UnholyStramash yes, I agree and cases in Scotland are much lower than England generally. Don't get me wrong, I will be delighted for you all if you are set free! :-)

Thank you for the info 👍

I had my routine (currently telephone) outpatients today, and I am fine (blood normal and, for the benefit of those who speak haem, MMR achieved in 3months of going on to second line TKI)

Well controlled CML is the type of blood cancer they worry about least, but it’s likely we’ll stay behind the shield. My general approach was endorsed: going out for well distanced exercise OK, but not entering any buildings other than my home and medical ones when necessary,

And I still get the dashing motorcycle courier for the meds

Sorry - can anybody explain the middle group thing and being moved into different groups? Or a link?

I am confused!

Rhubarb The shielded group are also known as the extremely clinically vulnerable group. The flag on medical records is high risk.

The middle group are those that are vulnerable. It includes numerous medical conditions and all over 70's. On their medical records it flags as moderate risk.

Everyone else is low risk.

See this link.

Although the link Oaksideboard posted states some children on the shielded list no longer need to shield and have or will be taken off the list soon.

Oh thanks. I had a sudden thought that there was a new group between ECV and Vulnerable!

@WwMILd, thank you for the link. In England, we've all been waiting desperately today for an update and still nothing.

I won't hold my breath waiting to be contacted, radiotherapy was in April but oncologist and surgeon have cancelled all their appts. Not even telephone follow up so if it were only me that got the shielding letter I'd be going back to work now. However, I've spent nearly 18 years protecting my son and that will never stop so I think we're at that stage where it's time to ignore the government and just make our own risk assessments.

Thank you @WwMILd. That’s a really interesting read. I feel comforted that any changes to the list will only be made by Drs and consultants.
I think it’ll be Wednesday with Boris. Hope he manages to deliver the news clearly and concisely and not confuse us all even more. My money is on 31st August. Reviewed before schools go back in September.

I am on the extremely vulnerable list. I understand why others are but I'm chronic asthmatic and thought asthma isn't one of the comorbidities that really make you more severe.

For clarity I take the highest level of preventers and use relievers most days. I am on Motelukast and have taken 6 sessions of prednisolone since February. Currently my asthma seems to have settled down and tends to during the summer.

Anyone on similar meds to me and not been sent a letter. I gave up shielding and decided to socially distance instead - now go out for walks. I don't go to supermarkets at all so not taking extra risks.

prescriptions not sessions!

I just don't feel that I should be on the extremely vulnerable compared to some of the other people on the list...

iVampire...very, very pleased your bloods are doing well.

FromMarch2020 Severe asthma is on the extremely vulnerable list. Moderate/mild asthma is on the vulnerable list.

The rules on how the central algorithm identified people with severe asthma are here. In addition to this, consultants and GPs added patients with severe asthma that weren't picked up e.g. those on biologics or on prednisolone courses from the hospital or after December last year.

You could speak to your consultant, specialist nurse or GP about if.

I'm not sure which I am. My letter says : 'The NHS has identified you, or the named person you care for, as someone who may be at risk of severe illness if you catch Coronavirus (also known as COVID-19).

@FromMarch2020 I'm on the shielding list due to my asthma. I'm on Symbicort and Spiriva Respimat inhalers, plus Montelukast and Phyllocontin tablets. I'm in Wales and my shielding has been extended until August.

I need some advice please. I have a neuro disability, use a wheelchair. My condition is listed on the vulnerable (flu jab based) list. I have another condition which makes you prone to a certain infection (cellulitis) but haven’t really had issues with that. NHS say it doesn’t increase my risk, national charity say “only if you have X very rare variant” but some patients disagree and say it must increase risk. I have basically been shielding without being told too.

When all this kicked off I dropped my care calls from twice a day to once. I asked that this week they go back to twice a day a few days a week. We agreed that one additional carer would be added to my rota to do that (The NHS fund my care and require my morning carers to be signed off on doing that task for me, most of those don’t work evenings.)

The new carer came in tonight. With a “smokers cough”. I don’t know what to do. She did have a mask on.

@JemilyJ, we have stopped all our carers coming in for our son but that’s because I am able to care for him. However we have received risk assessments from the agencies for when we’re ready to have them back in the house. They are very clear, if the carer is showing symptoms they definitely should not be coming into you. Is it CHC funding or your own PA’s? I would be contacting the relevant person to advise them. In the meantime there’s not a lot you can do except keep an eye on your own health.
Good luck, I know you must be worried.