Apparently I’m extremely vulnerable...

[SherlocksDeerstalker]

I’ve just received the text message from the government recommending that due to my condition I have to stay inside for 12 weeks. It has completely caught me by surprise, as I have no idea what condition they mean!

I am a currently healthy, fit, active, almost 40-year old regular busy mum of two. I survived stage 4 lymphoma 17 years ago, and have had no further treatment for 15 years and no further follow up for over a decade now. Could it be that? I had assumed comorbidities were about current diagnoses, but would perhaps having had cancer the best part of 20 years ago be an issue?

I’ve had pneumonia twice in my life. Maybe it could be this? I honestly don’t know. I have been trying to get through to my GP surgery to ask them, but as expected the line is constantly busy.

It’s shaken me up a bit if I’m honest. We are very much sticking to the rules here, and I’d taken the children out of school the week before they closed anyway. I’m very risk-adverse in usual life, and the fact that I may have been singled out as somehow ‘more vulnerable’ has really floored me. Or... could it be a mistake? And perhaps there’s someone else with the same name who really is more vulnerable?

I appreciate these are questions nobody here can really answer, and I know there are people up and down the country in far, far worse positions at the minute. I’ll keep trying my GP. I just wanted to write it down i suppose.

I got told by the Dr to shield, as I'm very high risk to secondly infection. No letter or text but I registered online as instructed. I finally got a text over a week later telling to confirm with my Dr. Round and round we go!

I don’t understand about registering for deliveries. I filled out the form to say we didn’t need any help now (as I’m able to shop for us) but am now worried that if for any reason I can’t we are done for. Am I supposed to be doing something further? We certainly don’t need a ration box and I’m happy to go as long as I possibly can physically shopping.

If you ticked no to help with food you won’t get food packages from the government but you will get priority slots from the supermarkets as long as you register with the same email address.

If you are extremely vulnerable though why are you physically shopping you should not leave your house for 12 weeks.

I’m not, DH is. He isn’t leaving the house - he hasn’t for ages. I can physically shop now and we are distancing at home.

@hiredandsqueak my dad is in the same position. He has PV and is on chemo tablets daily. He decided to shield anyway but I wish he’d got a letter so I had more chance of getting his shopping delivered. I called Bloodwise this week and they said although anyone with an MPN should have had a letter (and those on chemo absolutely should have) they are aware lots of people haven’t got them. It seems some health authorities have misinterpreted the guidance on MPNs apparently and didn’t generate letters.

Did anyone get a follow up text earlier today? Saying about do you believe you've been contacted in error. If so to contact GP???

Gin - yes. It's all a bit of a shambles. I registered on the govt website because I'm having chemotherapy. Got a text saying I wasn't on the NHS list and they would consult with my GP. Then got the text saying I should super-shield, don't go out etc. Letter would follow, but hasn't arrived yet.

I'm going to discuss it with my oncologist when he rings me next week. I'm of an age when it's use it or lose it and I hadn't recovered fully from my surgery when I started chemo. Now my recovery has been set back. If I can't leave the house for a walk, even when there's no one on the streets, I'm in danger of seizing up and losing my mobility.

This whole thing has been a shambles. The first letter that went out was based on information from secondary care and hardly reached any of our high risk patients. Practices were then told to run their own searches to identify the high risk categories. We were given a weeks notice to get the letters out so there was no time to go through each patients notes individually. So OP lymphoma was searched on and anyone with that coded in their records had a letter. Ideally practices would have gone through the list of patients and excluded those in remission but it just wasn't feasible. You can call your GP and let them know you are in remission and they will remove you from the high risk register. The government then said they were sending out these texts. I have now got to answer hundreds of calls/queries from patients asking why they received a text!
With regards to asthma/copd/diabetes, these are looked at individually. Things like number of exacerbations, hospital admissions, oral steroids are looked at. Multiple comorbidities are also taken into account. The worst thing is when patients read the guidelines and decide they are high risk and demand a letter even when a GP explains why they do not fall into the high risk category.

I haven't heard anything yet. Congenital heart condition and severe asthma. I'm in NI will it take longer for us to get letters or anything?

@Nonameslob really sorry to ask, I’ve held off phoning my Dr as I feel silly and demanding at such a difficult time. I have no spleen which is why the dr told me to shield, full 12 weeks etc and she arranged for me to have vaccines. It’s been nearly two weeks since she called and I’ve had no letter or text.

On the splenectomy groups I’m on there is about a 60% rate of people getting letters and texts, some hearing nothing at all and the others being advised to carry on as normal within social distancing. Our understanding is that we aren’t more at risk from the virus itself but we are very high risk of secondary bacterial complications when we contract anything that takes us down especially respiratory illness, which is where we would add pressure to the nhs as the complications are often severe and life threatening.

Splenectomy was included in the group c (also referred to as group 4 I believe) and my understanding, that could be wrong, is that the surgeries were asked to flag those in that group to be added to the list to allow us to get help with shopping, those who work, healthcare and advise. I also understand the guidance for this group has been a bit fluid and changed a few times.

Just not sure whether to email the surgery to ask, as it would be really helpful if I could actually get a regular food shop (I’m getting stuff from loads of different places at the moment and doing ok but it’s something I’m having to do constantly to keep the basics in) and some solid guidance, the letter situation at the moment just adds extra uncertainty at an already bloody difficult time. Would I be wasting their time to ask, as the dr has already said I’m high risk?

Redcherries my friend phoned her GP about her husband this week as he hadn’t heard anything. He has cardiomyopathy thought to have been brought on by a severe bout of flu and has previously had cancer so she was unsure. The GP said immediately he shouldn’t have been missed and she will make sure a letter goes out. So I’d say worth contacting them.

Well my child has complex needs and uses a bipap machine and oxygen on a normal day. He has one of the life threatening epilepsy syndromes and is PEG fed and completely dependant for all his care needs.
Despite speaking to the G P ( who is adamant he is extremely vulnerable if he gets it ) and refering him twice on the gov website we have still not been officially told to shield. We are obviously but there must be many falling through the cracks and not on the list when they should be and visa versa.

@redcherries splenectomy patients at our practice were among the first batch to receive a letter. I've since been surprised to hear that a friend's doctor told her splenectomy patients don't need to shield! We are sticking to our decision that you are high risk. If your practice has the option email them and say you haven't received a letter. Email just reduces the demand on the phones which are pretty bad at the moment. If not please do call.

@flapjackfairy I'm sorry to hear that, you shouldn't have to but have you contacted your hospital consultant? They can provide a letter too.

@GinWithASplashOfTonic Did anyone get a follow up text earlier today? Saying about do you believe you've been contacted in error. If so to contact GP???

Please tell me this isn't true! If it is can I make a suggestion if you know it was definitely an error. Please email your GP and say I do not have any condition that would put me in the high risk category, please remove this from my records. Obviously if you are not sure then send a query as we don't want anyone missed.

I just wanted to add, anything I say here is based on the limited information I have from posts so please always speak to your doctor who has all the information.
Right, I'm off to see how many queries I've got

Thank you @Nonameslob (Not sure why it won't let me tag you) I'll pop an email across, it just adds to the feeling of anxiety and fear not being able to access the support but still doing as the Dr says.

@Cheeryandmerry Thank you too, I will be acting on the advice :)

A lot of my group also received the text about the possibility its an error and it created even more anxiety and confusion, some thought it was a scam/hoax as it came from a mobile number not the NHS or Gov texts, others are scared they will have support taken away and that they have taken leave from work etc.

Oh, it did tag you :)

My OH has Addison's disease but hasn't heard anything. He has been furloughed at work but is a bus driver so coming I to contact with the public. I've been telling g him to self register but he seems to think it's only to get help with food deliveries and medication. Tried emailing his consultant to get some clarity but heard nothing.

Just to update you, I've received an email from the government with the search they used and I now need to run that against any we have missed and add them to the high risk category.

Also, last week I was told there were possibly hoax texts going out but no one has been able to confirm that yet. Apparently they didn't say where they came from whereas the genuine say NHS or government. Although it will cause extra work if you are worried at all please call your doctor. No one should have extra worry at a time which is worrying enough!

I got one from uk_Gov but I assumed it was sent to everyone.

@EricaNernie Everyone got an initial text from gov saying to stay home with a link to gov guidelines about what you can and shouldn’t do. The shielding text specifically mentions health and has links to health/shielding guidance for that group I believe.

thank you @Redcherries, i didnt want to hassle the GP

I'm confused because the supermarkets have me on the extremely vulnerable lists but I've had no letter or text.

I feel for the people tweeting to organise it all!