Just received a letter from my bronch specialist advising that Bronchiectasis has now been added to the shielding list from last week ,was off work due to this but was social distancing since 11/3/2020.I’m on prophylactic azithromycin but classed as mild has anybody else received this update !
Bronchiectasis now added to nhs shiel... - Lung Conditions C...
Bronchiectasis now added to nhs shielding list
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Tinker26
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Hi Tinker, I have been on the list with my bronch since the beginning. I think because I filled the peculiar criteria of having at least one copd symptom and nebulising drugs. To my mind that was nonsense because the type of lung damage in bronch, whether mild or serious, is virtually identical to that caused by covid and this should have made it necessary for all bronchs to be sheltered. We should all have been included in the same category as all cf bronchs. I am v pleased for you that you have been picked up and I hope that you having shared this information will help other bronchs to get included.
Tinker26• in reply to
Thankyou Littlepom ,it was just that I rang my drs at the beginning and was told that because I had not received a letter that social distancing was required only and to be sensible ! I have worn a mask and social distanced for 6 weeks but still walk my dog daily ,family have been doing my shopping* for me .So isolation it is xx
• in reply toTinker26
Yes best to be safe. I am presuming that you will now get the NHS letter and do register on the corona virus extremely vulnerable site.
Joy123• in reply to
Me too, I’ve been on the list since the beginning. I’ve been bombarded with texts, emails and letters too informing me I’m ‘shielded’. I’ve only been contacted by one supermarket though, priority shop - Sainsbury’s but can’t get a slot. Fortunately I have family near by. Keep well. Joy.
I haven't had an update. I have mild bronchiectasis & use a Clenil inhaler twice a day. Since February I always wear an N95 mask & disposable gloves if I have to go to bank, pharmacy, Sainsbury local. I've only been going out once a day, for no more than an hour's walk (I've found no toilets open in my town! )
I'm not sure if I'd want to be given the "shielded" category, as my freedom of movement would be curtailed & not allowed out of my flat at all. But it would be easier to get home delivery slots from supermarkets, I'm looking several times every day /night since 7 March & finding it stressful as have only managed to get 1 delivery so far, with another due on friday.
What do people think of the pros & cons of being shielded rather than just social distancing?
Pros Getting supermarket slots. Had phone calls checking how I am.
Cons Not able to go out and because live in flat. Limited access to garden.
However remember we do not live in a police state. If you decide to go out for a short walk that up to you! I am thinking that when mornings are warmer might go for short walks at 05.30! Am awake anyway because not sleeping well and who am I going to see at that time in morning!!
Thanks. I often wake early too, but it's still cool in early mornings up here in North Yorkshire so I usually wait till lunchtime to go for my walk. That's because there seem to be less people out at lunchtime... they are at home having lunch. For years I always tried to walk at least 10,000 steps every day, as well as 2 cardio rehab exercise classes weekly, so I definitely prefer to be able to go out walking rather than being limited to staying in my flat wearing out my living room carpet as I walk my 10,000 steps! I can ask friends or volunteers to bring me shopping.
I've been thinking along the same lines. As long as too many people dont have the same idea and we all start bumping into each other !
I have recieved the letter and, despite shielding from the beginning, found it scary! Especially the bit advising me to have a bag packed. Hated doing that and cried. I do go out for a walk once a day with my husband, we meet very few people and always distance. We can't sleep in separate rooms as we were doing up the spare room, ordered curtains and sent old ones to charity shop! My husband shops once a week and everything is scrubbed when he returns. I think the the only pro to receiving the letter is community help if you're alone.
Yes, I think it's important to wash or spray with disinfectant everything that comes into the house... Shopping, mail, newspapers etc. I throw away the envelopes carefully, then wash my hands & then leave the mail untouched for 3 days. I put the mail in a place where I can read it without touching.
Hia there are volunteers happy to do shopping contact adult social services or council . I am alone 69 lovely man shops but he understands my cooks needs. Also local farm shops the butcher all deliver . Support local businesses. People think expensive not if you cook . Keep well we are what we eat
Hi Balloo, yes, I'm also doing more cooking with fresh locally-sourced ingredients from local farms, greengrocers & butchers who are now delivering locally . Some have minimum order of £50, but can share with neighbours or friends. It may cost more than supermarket food but I like to support local businesses too, & think of all the money saved by not eating out...
Yes if you fish eater fish for tough Cornish. Fish men .came beautifully packed ok I have to do but . Rgs
I like smoked salmon & trout best, but an occasional treat as the saltiness puts up my blood pressure so then I have to take another pill for b p!
I had booked on a Shearings coach trip to St Ives for this week, but of course it didn't go. Ditto for a trip to Newquay in March. I cancelled both trips in late Feb, when I could see the plague already spreading outside China. Having lived through SARS & swine flu I could see what would happen & didn't fancy 11 hours journeys in a coach with plague on board! I got my balances back but lost both deposits as it was me who cancelled it, they only cancelled all tours weeks later. So will have to wait another year or 2 to visit Cornwall. Here in Harrogate we get fresh North Sea fish from Grimsby or Whitby delivered by a "man with a van" .
But for the last 2 weeks there was also a scammer selling inferior fish for high prices to vulnerable old people in big houses....
Hi, I am new to this website as only diagnosed with mild Bronchiectasis in March but had symptoms for a couple of years. I live near Selby North Yorks and don't know anyone who has this condition so learning as I go along. I am contacting you because you are local to me and would like to ask how you manage the condition. I have just had a telephone appt with my consultant who apparently wrote to my GP 6 months ago to put me on prophylactic? antibiotics i.e. 3 tablets a week but the surgery never contacted me. He is writing again to the GP. I am not so sure about taking long term antibiotics - is this something you do? Thankyou...
I too have mild bronchiectasis if there's such a thing ! After constant doses of antibiotics my bugs were not responding so I ended up on IV drugs in hospital ,after my stay I asked about prophylactic antibiotics and was offered azithromycin of which I take Monday Wednesday and Friday .They're miracle drugs and I have only had 1 chest infection this year and that came back viral ...I wonder what that one was !I have not experienced any side effects other than feeling normal again .Good luck and I wish you well 🙏🙏🙏
Thankyou very much for responding so quickly. With any new condition you can feel quite alone so good to know the BLF members can help by speaking about their experiences. Your experience with antibiotics is very positive so I will give them a tryand see how I go....
Please do I hope they’re as successful for you as they are for me x
PentreathVolunteer
Hi Tinker - I have moderate bronchiectasis and asthma which is usually well controlled on Fostair 200 2 puffs twice a day plus a Bricanyl reliever. Most years I have at least two exacerbations and sometimes four and they have been getting harder to recover from. I have not had a letter so have been continuing to walk around the village each day. It is easy to keep the distance required and I have not had any problems. I have not had a letter but have been in self isolation since 14th March and have not been to shops, post office or anywhere that would risk being with a group of people. I live on my own so even exchanging friendly greetings make the day feel better. I am fortunate in having a wonderful neighbour who gets shopping and prescriptions for me and the local general stores would deliver if necessary. My daughter has been concerned that I should be shielded but I am not so sure.
Thanks for your reply ,apparently it has only been added to the nhs list in the last few days so maybe it’s on its way xx
Not so. Pentreath would/should have been identified as requiring shielding from the start. The original rules identified someone with bronchiectasis who (inter-alia) had 2 or more exacerbations a year (an attribution of severe that comes via the COPD rules) as requiring shielding. Pentreath mentions that applies to her/him.
Your bronch specialist got it wrong Tinker if she/he said that bronchiectasis had been added to the list last week. Bronchiectasis has always been on the list but there were attributes in addition (and there apparently still are) that determine whether or not a bronchX sufferer needs to shield. What strikes me as being different in the rules from those way back when (since it now seemingly applies to me) is that the category taking long term macrolide antibiotics has been added.
I have 0 to 1 infections a year but I do take prophylactic azithromycin (probably why my exacerbation history is good). Maybe I'll get a letter from my Papworth bronchX specialist now, though as I live in Thailand where the impact has been remarkably low (no recorded cases of infection within 80 miles of my rural existence and only 3,000 recorded infections and 50 deaths in the whole country of 60 million people) I'll probably stick with rigorous stay-at-home / physical distancing on rare shopping trips, rather than adopting strict shielding from my family. Thais have pretty much all worn masks from the start here (which probably has been one of the keys to the virus having been relatively low impact - in addition to night curfews, alcohol bans and restaurant/bar/entertainment lock-outs and internal travel restrictions).
Hi pentreath, have you contacted your doctor, I had a text from the NHS at the beginning telling me to obey Gov rules, but no letter.
I contacted my GP and he told me to shield, but still no letter. It was my daughter who told me to to speak to him.
Hi, I posted something similar last week and found a link to an NHS document which may explain why more of us are receiving letters.
healthunlocked.com/blf/post...
I think we all know our own condition so should just take suitable precautions.
Take care
Does this information apply to Wales too? I can't find any information that includes bronchiectasis as being included on shielding list.
I don’t know about wales sorry xx
I only received my letter today (south wales) I am classed as moderate to severe COPD. I'm not keen on staying completely isolated for 12 weeks but have been trying to keep myself to myself before they imposed the lockdown as was glued to the news coverage and could see the writing on the wall so to speak. I'm only relieved to receive the letter so as some people in my life may now respect my feelings of anxiety regarding social distancing and disinfecting shopping, mail etc. I felt that people have been rolling their eyes at me, thinking I'm being "too much" regarding trying to protect myself. I take my dogs out for a walk, always away from people though and I do the shopping as I feel I'm safer than my husband, more aware of social distancing. From reading up on the Welsh assembly regs I realised that people like me hadn't received a letter as I haven't had to be admitted to hospital for my condition, just doctor visits and antibiotics and steroids then onto inhalers and capsules. Apparently the gp's are given names from hospital list which they then forward letters onto. They then can add names to the list from their database but that may take some time due to the current situation. We have a new app that we can put on our phone, it's called askmygp You download it onto your phone via your surgery's website. From the app you can then txt a message, with the option of a reply via telephone call, video call or email. So I txt'd asking if I should have had a letter. I had a txt reply within half hour to say she had checked my records and informed me that I should and 2 days later received my shielding letter (today). Maybe worth asking your gp via that app? Hope that helps xxx
Thank you so much. I am so grateful for your response. I will follow up on the information.
😊
Your very welcome 👍Not sure if this helped me but in my txt to my gp I explained how anxious I was due to my condition and that I was being made to feel foolish by certain people in my life so found myself pleasing others but putting myself at risk to please them. It could just have been that they hadn't got around to going through their patients records and I just prompted her or it could have been because I emphasized my anxiety. Anyway sorry, I tend to rattle on sometimes 🙈🤣 good luck 😁👍 xxx
☺☺☺xxx
I haven’t yet received this update. I’ve been socially distancing since I returned back from a holiday in Australia on 21st March. I also volunteer for Samaritans- where we have altered how we do this to ensure we meet government guidance. I’m not sure I could cope mentally with shielding
Yesterday I was surprised to receive an email from a supermarket chain
advising me that my name and some details were on the priority list from
the Gov..... If I choose to use this company then contact and arrange for weekly delivery and time slots.
I was stunned, I have had no paperwork at all.
Had stayed up till 2am searching for dates & time slots for the nearest supermarket store, and had a big delivery on Monday last.
Wasn't overly pleased with the service so will go to this other one....
Dare not refuse....
Jo....
Ps. I rang Gp at the start only to be told my condition was obviously not bad enough for the Gov offices to include me.
Self isolating since 5th..March.
Hi Tinker26
I received a call from my Doctor's surgery to say I was not a Vulnerable person even though I have Bronchetisis
However I have received 2 calls from the Shielding people checking if I am ok and and I one the Supermarkets Vulnerable lists which I am
I am still self isolating but strange that my Doctor doesn't Class me a Vulnerable
Christine
Hi Tinker. I was phoned by my G.P. last Friday to say that I had been put on the shielding list. I have bronchiectasis, pseudomonas colonisation of both lungs and nebulise colomycin twice a day. I have been self isolating since March 1st on advice ( with menaces) from my daughter who works for the N.H.S. I received an email from Iceland on Tuesday to say they had been given my details by the Government and were offering a prioritised delivery slot. I got the letter from the N.H.S. yesterday with all the details about shielding. Today I have been able to book a delivery slot for Sunday.
Hi.. I've not received anything... I filled in the form that was suggested on here & got messages off Asda & Iceland to say I was on a priority list for food deliveries.
Think I have Bronchiectasis moderate.. Been on azithro for 9 years to combat infections. Bit confused. 🤔
I feel this is a positive step in getting our condition recognised. Hopefully I’m not being too optimistic in thinking this may pave the way for change in getting us more timely and effective treatment.
Weird , I got mine weeks ago....live in Scotland .
A step in the right direction but such a small step. The conditions for 'severe' make it far too restrictive and do not even appear to be in line with the scoring methodology embodied in the British Thoracic Society or the EMBARC Bronchiectasis Severity Index. This is a typical bureaucratic move in having initially got it wrong they make it as difficult as possible. I'm with Littlepom on this. ALL bronchiectasis patients, who by definition have lung damage, should be identified as on the list as a matter of principle, whether they wish to adopt all the shielding measures or not. Covid-19 is a lung specific virus and these restrictions, based on severity, risk missing many very vulnerable patients. Having said that, good luck to Tinker26. Glad your on the list. Keep safe.
Hi Tinker, I read your message yesterday and guess what arrived today from my consultant. Yes the letter. I am surprised I would describe my bronchiectasis as mild but the asthma moderate but I've been isolating for the last 5 weeks anyway. But interesting the letter has come now. Please keep safe and well and keep smiling. Jo xxx
Tinker26
Hi,
It's better to be safe than sorry, it's good that Bronch has been recognised, As a result of breathlessness I was put on a ward as an isolation patient instead of a standard A&E ward, not nice After a lot of wrangling I got out, don't let anyone tell you the Spanish health system is better than ours it's not. They are as confused by the rules as much as the rest of us.
Keep well & safe, wear your mask keep away from crowds.
IKeith. (Stranded in the Canaries)
Hello Tinker . What is the source of the document that appears at the head of your first entry of 3 days ago. I cannot find any reference to Bronchi having been added to the NHS methodology document. Also puzzled by why Santisuk describes Bronchi as 'always been on the list' unless this was intended to mean included but not specified by name within the severe respiratory disease catchall. Can anybody shed some light on this 'over complicated jungle' Lot to be said for keeping it simple. Suppose that is quite beyond some of the people who produce these rules.
It’s on blf.org.uk /support-for-you/coronavirus which is the link on the letter that I received from my specialist to read x
Hi, I have bronchiectasis and have heard nothing. Last time I looked on the government website it wasn’t listed, it seemed very precise about full cystic fibrosis (not non cystic which is what bronch is). I have taken it upon myself to stay safe and stopped going to work six weeks ago.
To be fair I don’t have it as bad as most, I keep standby antibiotics but take nothing else as I can get by pretty much ok, even doing an hours walk every day doesn’t badly affect me.
Having said that I still worry as it is an “underlying condition” and would put me at a disadvantage if I caught this dreaded virus. I did read somewhere but can’t find it now that you will only be considered at risk if you have been hospitalised or prescribed steroids in the last two years......don’t know how true that is?
But getting an answer out of anyone, even if just to put your mind at rest, is damn near impossible at the moment.
Spot on I'm afraid Ian. I am in the same position exactly almost. I was diagnosed 70 years ago and except for three weeks in hospital 20 years ago I leave very little 'footprint' in whatever NHS Wales holds. I am allowed by the GPs to hold a small supply of antibiotics at home but otherwise hardly bother them preferring to battle on as I have for many years. I have also been lucky in avoiding influenza over the 18 years with my present GP Practice. I did see a Consultant in February this year, at my request, in order to establish a status quo at my age (81). Bronchi means lung damage and Covid-19 is a lung specific virus. The severity of the Bronchi is academic when it comes to infection by this virus and I would challenge any Medic to claim differently. I believe that in terms of the Bronchi community the identification methodology used by the NHS is flawed. BUT I'm not giving up until I get an answer from someone in authority. Good luck and keep well
I agree cymroboy, lung damage is what we have and therefore we are more at risk. I have found the gov website fairly useless in its definition of what an “underlying health condition” is. I was only diagnosed two years ago after a three week bout of breathlessness and feeling ill, but as it hasn’t affected my life in any real way I have only had one follow up at the respiratory clinic. So like you I feel I may have slipped through the net due to my low profile within the system, but that doesn’t mean I am any the less at risk and therefore worried.
I will have to make a decision myself as to when I go back to work regardless of when the lockdown may end. If I don’t feel it’s safe then I won’t go. But without being on the official list then this will almost certainly put me in a difficult position.
Anyway stay safe and look after yourself.
You are correct Ian, recognition is the important factor. I have written to my GP Head of Practice setting out my case for being on the SP List. The answer can be Yes, No or bin it. While I respect the fact the this must be a clinical decision, I reserve the right to question the list methodology rules that place such a heavy emphasis on "severity". I doubt if this virus takes much notice of 'severity'. I will post on this thread whatever reply I get. If necessary, I will escalate my case to the top of the tree
.Thank you for your comments. Good luck and stay safe.
I’ll keep an eye out to see how you get on. In fact I think I will try the same in writing to my GP. Although I phoned the practice back near the start of all this asking for a letter or something official to present to my employers should I need to. The response I got was about what I expected, basically they aren’t writing in regard to this crisis and told me I would have to call 111. Which is ridiculous as this is now more for emergencies and not a general enquiry line. So I’m left at a loss as to where I go.
I’ll be interested to see how you get on, take care.
Did you ever get a response from your surgery regarding shielding? I also manage with just standby antibiotics and I'm concerned about dealing with the public once libraries reopen fully. Currently we're not open but it's only a matter of weeks
No Milandra I just received my letter saying that I am shielding until 1st August,I work as a frontline worker in a major bank on the counter,my manager has been in touch and I am to be health assessed by my h r .I think I will be working from home dealing with an online chat ,just waiting to see what happens ,will let you know what occurs x
I think my situation is different from yours. My question was to Cymruboy on the topic of not being told to shield despite our diagnosis. I'm in the same boat as him and Ian who's comments are in the thread.
I'm glad to hear your employer has been understanding
Whose! I mean. Oh dear
No I never did get a reply, not even an acknowledgement. I have drawn my own conclusions. The NHS methodology for the' Shielding List' left much to be desired. The restrictions imposed appear to have more to do with keeping the numbers down (hence cost) than good clinical judgement. In this context most of us did not require food boxes or any support and merely wanted to be recognised. The only helpful part would have been supermarket priority for home food delivery and that would not have cost the Government a penny. All Bronchiectasis patients should have been included ; the restrictions in respect of 'severity' are unrealistic. It was also so easy to be 'missed' if there was no recent footprint in the medical records. So long term patients who had not been hospitalized in the previous year or never bothered their GP very often, were easily missed, demonstrating another weakness in the methodology. If we add to this an unhelpful GP surgery, it is not surprising that many of us have been missing from the 'List'.
Yes, I agree with you absolutely on all points. My GP assumed I would be working from home because of the bronchiectasis (she said back in march when I spoke to her on a different matter) but I didn't get anything official and am a keyworker so I've worked right through.
I have bronchiectasis but no letter so I've been going to work. My kids usually do my shopping, they live elsewhere. I walk my dog once a day. I was very poorly before i was diagnosed and for a year afterwards. However,it's now over a year since i had a chest infection and about 6 months or more ago my consultant told me that i no longer need attend for check ups. I read that the information on who should be on the shielded list comes from the hospital consultants. This would explain why ive not had a letter, I'm no longer on their "books".
I have a supply of standby antibiotics and access to the local Respiratory Team. My children feel that i should be staying home. Id go crazy though and I've not been told to.
I think it’s because of my medications that’s prompted the change ,although mild Bronchiectasis it was the bugs in my lungs that weren’t going away x
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