Shielding Text: Hi Unexpectedly I... - British Lung Foun...

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Shielding Text

airbusA346
airbusA346

Hi

Unexpectedly I received a text on Thursday saying I had been identified as someone who may be at high risk if I catch Coronavirus and I was advised to shield at home until 30th June.

It also said I should have received a letter from the NHS previously to confirm this. I haven't received anything before and this was the first communication I have received.

I have contacted my GP asking why I have been identified as high risk (so far I haven't heard back from them). It seems a bit late in the day to say I need to shield, and I have been going to work (I have limited exposure to people/general public) since the lockdown etc started.

I have cerebral palsy, hydrocephalus, scoliosis, obstructive sleep apnoea, noctural hypoventilation (I am on NIV at night). I also suffer from shortness of breath and drops in oxygen levels on exertion etc, which no one can get to the bottom of.

:)

13 Replies
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It Is a strange situation at the moment. Some have received texts others letters, some nothing at all. In your case it is eight weeks too late.

ladyn
ladyn
in reply to Badbessie

I received a letter in March saying to isolate for 12 weeks. I’ve since heard people have received tex and letters to say to isolate for another 12 weeks. I have not received these.

Jaybird19
Jaybird19
in reply to ladyn

Standard letter no time to change date perhaps. I havent had mine yet ,. I had z text in mar ? Heard no more so phoned . Doctor said last week that i didnt qualify, with bronchiectasis and raised BP , to mention a just two ,and that government had changed the qualifying conditions, then later phoned back to say i did qualify and a letter going in post . So what is the betting that it arrives in 2/3 weeks time with the letter telling me to" isolate till June. "

Mission accomplished?

I also received the same text on Thursday, no letter & this is the first notification received.

I have Bronchiectasis & Asthma but have been isolating as much as possible already but it has been confusing as I received priority slots from Asda & Waitrose yet Tesco told me I wasn’t on the government list.

The lack of clarity has been alarming & the government should have provided a definitive list of conditions which left people in no doubt if they should be shielding. Instead we’ve had this ineffective notification system which clearly has missed many people out.

With all the illnesses mentioned you have answered your own question. You will be high risk. It's not good that you haven't been informed by anyone but it's best to use your common sense now that you are aware.

Good luck.

Shambles comes to mind when considering the authenticity of this LIST. The only thing my GP Practice receptionists will tell me is that I am not on the list. A letter to the Head of Practice has not even been acknowledged. At 81 years I have Bronchiectasis of over 70 years standing. On age, let alone 'severity,' I consider I should be on the list. I can, of course, shield as much as possible but it is clear that for various reasons, the list is missing a number of vulnerable patients. For me, the issue is one of identification by the NHS. I question who has ultimate responsibility for this list and is there an avenue of appeal if the GP Practice does not even respond to a reasonable query.

Charlie_G
Charlie_G
in reply to CYMROBOY

I’m not saying you shouldn’t be on the list in the slightest, but the only ‘guaranteed’ criteria to automatically get added are very specific. Age isn’t considered at all, and only a very limited number of respiratory conditions fall under the automatic criteria: all cystic fibrosis, severe asthma, severe bronchiectasis, and severe COPD. What severe actually means is a debatable and probably somewhat contentious issue, but if they’re going off the NICE 2010 criteria for severe disease, then you’re only looking at people with a baseline fev1 below 50% for those with obstructive conditions. Anyone outside of those 6 criteria (and even some that meet them, because the system isn’t foolproof) is dependent on a GP or other medical professional adding them, and they will only do so if they feel there are clinical grounds. All of that said, if you feel you should be on the list and you’re not, and you’re having issues with getting a response from the GP, you can actually go to the government registration page and register yourself. When you give them your nhs number at the appropriate stage of the registration, I’m led to believe they will then use your records and/or liaise with medics to determine whether or not you should be included:

gov.uk/coronavirus-extremel...

CYMROBOY
CYMROBOY
in reply to Charlie_G

I am vert well aware of all the points you make. The point I was making is that the criteria embodied in the NHS Methodology have been far too restrictive in terms of 'severity'. The fact that patients are still being added after weeks of delay in identification does not lead to confidence in application. While you are correct in pointing out that age is not considered in the criteria, it is interesting to note that the British Thoracic Society (a clinical Society) Bronchiectasis Severity Index scores six for those over 80 years, out of the nine required for grading as severe. No system will ever be fool proof but should err on the side of caution. Bronchiectasis by definition indicates a measure of lung damage and Covid-19 is lung specific; 'severity' becomes somewhat academic for any infected individual. There should not be any contentious issues in this context. Medics have been known to disagree even if they tend to do this in private. I see no logic in the restrictions that have been imposed other than to reduce the numbers. . I live in Wales, there is no registration procedure within Wales NHS.

Charlie_G
Charlie_G
in reply to CYMROBOY

I absolutely agree with your reply, but generally feel that whilst far from perfect from a records and systems perspective, those on the ground in all of the home nations have done their best to add individuals as quickly and as accurately as they can under extraordinary circumstances. I was effectively added ‘late’ in England (but was already shielding on my daughter’s behalf anyway), but given the fact that I think shielding is likely to continue a fair way beyond the current timescales, I’d still advise anyone who thinks they should be on the list to pursue it in case they find they need support as time passes. I know the different countries have different processes in place, and must apologise for the automatic assumption that you were in England, but given the WAG wrote to my daughter to tell her to shield when we haven’t lived in Wales for a year, you would assume they’d take care of their own, current residents before worrying about people permanently elsewhere.

I left West Wales last summer after 18 years. It’s a beautiful country, with lovely people, but I have no hesitation in saying NHS Cymru is absolutely abysmal. The primary driving factor in taking my 12 year old with complex needs to England was the genuine, firm belief that one of us would have died years before our time had we stayed, and tests since moving have only reinforced that as being a real possibility. There were some wonderful, truly dedicated professionals involved in our care, but they were unable to provide the treatment and services they wanted to due to the structure, lack of provision and widespread limitations of the service; the stories I can tell of the treatment we both received (or didn’t on occasion!) at 7 different hospitals under 3 different UHBs, and the (guilty) knowledge I have of the huge failings in the system generally, are almost unbelievable. Having previously heard it from people when they’d not long moved into Wales, I can now vouch first hand for the massive disparity in medical care between Wales and England, and it has to be remembered that healthcare is an entirely devolved matter. I realise that’s of little help to you, but I really think the Welsh need to be aware of just how poor the care is comparatively, particularly if you’re a patient crossing into the realm of having multiple issues or otherwise being a complex case. Services here are far from perfect, but I am at least more confident that I’m not going to be systematically ignored and die in the meantime.

Have you considered contacting your AM for help? The other option would be to contact any specialist you might have involved (respiratory or otherwise) and ask if they believe you need to shield, in which case the onus is then on them to get you added if they say yes. If they say yes but speak to your GP, explain they won’t return your calls. It shouldn’t fall to you to do all of this, good sir, but from my own experiences, I highly doubt it’ll get resolved otherwise.

It’s an educated guess, but the why is probably a mix of the breadth of your health problems in combination with the respiratory element. There are 6 ‘automatic’ criteria to be added to the list, but they’re not exhaustive and clinical judgement is being exercised to add people outside of those patient cohorts e.g. many patients with tracheostomies aren’t necessarily included automatically, but would quite obviously be very high risk for a virus that effects the airways and causes breathing difficulties. As for getting added ‘late in the day’, I got my letter on April 23rd to shield in my own right having already been shielding to protect my 12 yo who received her letter on March 21st. My letter actually states I should shield for 12 weeks from the date of it, which would take us well into July...

That leads me into saying I think we have to be realistic here about how long shielding is likely to last for. If strict social distancing is required for an extended period at a national level, the idea that we can all suddenly just start going out into the world again in the near future seems both extremely unlikely and rather unsafe from where I’m sitting. In conversations with my daughters respiratory team over the last couple of weeks, the collective view seems to be that they think shielding is likely to go on beyond 12 weeks (which in reality it already has with the blanket extension to June 30th) but not necessarily going to last the full length until there’s a vaccine. However that’s with specific reference to children with CF, the majority of whom have relatively normal lung function (unfortunately not including my daughter), and is also subject to a number of caveats including waiting to see how things develop in countries that have already lifted lockdown measures and returned their children to school. It may also be that the criteria will change to say (for argument’s sake) people with a baseline fev1 of x% or above can stop shielding and move to strict social distancing instead. We just don’t know, and that uncertainty is the biggest difficulty in trying to manage both the larger picture and our own, individual lives.

Doctor told me last week that it had been changed to protect those with poor immunity. I dont think anybody knows.

I too only just received my text on Thursday and my letter today...I have copd and asthma but have been going to work as normal...although very short of breath...I work in a care home where we have covid...I too think it's a little to late.

I think with your criteria you should of been one of the first to receive a letter x

Well I've finally had a response from my GP... They haven't got a clue why I have received the texts.

Great...

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