Stupid question but..: I have... - PCD Family Suppor...

PCD Family Support Group (UK)

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Stupid question but..

Iram_sa profile image

I have bronchiectasis as a result of PCD. Do I assume that I will be one of those who need to isolate for 12 weeks? I already have been for a while, as I was unwell anyway and didn’t want to take any risks.

But I wonder if anyone with the same conditions have heard yet from NHS or perhaps bit early yet? We have till Sunday to be informed right?

15 Replies

Hiya - we were talking to the Nhs yesterday - you are definitely should self isolate for 12 weeks. We are updating our website as we get information

Good luck and stay well

Iram_sa profile image
Iram_sa in reply to fionac66

Thank you so much for your reply Fiona. Will check website. You take care too.

Iram_sa profile image
Iram_sa in reply to Iram_sa

Hi Fiona,

Sorry another question but I still haven’t heard and when I rang GP surgery yesterday, they said NHS England were sending lettersout but when I went on their site it looks like letters were sent to GPs asking for information on their patients. So do you know which it is?

I am struggling getting my online shopping and if I have digital evidence of being high risk (which Royal Brompton have said I should get) then I could hopefully benefit from government food parcel scheme.

fionac66 profile image
fionac66 in reply to Iram_sa

hi - I’m sorry that you haven’t heard and I am not sure when Or if this will be able to happen now as the hospitals are getting busier.

Do you have any neighbours that can help you out? We have a WhatsApp group for our street - perhaps someone would be happy to you.

Feel free to message the group if you need to directly

Hi Iram not a stupid question at all. I have received my text to say that I am on the list for extremely vulnerable. I did receive it Monday. I’m not sure if it is because of being under the care of a CF unit.

Hope you are ok and please stay safe. Best wishes

Iram_sa profile image
Iram_sa in reply to dmacheta1

Thank you so much for your reply. I haven’t received my message yet but spoken with specialist nurse at Royal Brompton yesterday who said I should be on list but GP will send it. Rang GP and they said NHS England (I think) would and should hear by Sunday 29th. I am isolating anyway.

Hope you are well yourself and be safe too.

TerryBun profile image

Yes, you will definitely have to isolate for at least 12 weeks. I received my first text on Monday and have had 3 more since. You must not leave your home and if you live with anyone that leaves the house to shop or get prescriptions, then you have to be three steps away from each other at all times. Preferably sleep in separate rooms if you can, use separate bathroom, again if you can, otherwise use at different times and wipe all surfaces when you leave room, etc.

Stay safe.

Iram_sa profile image
Iram_sa in reply to TerryBun

Thank you for your reply and for the detailed guidance on actions I need to take. I am still waiting for my message. Will follow the guidelines you have been given.

Trt01 profile image
Trt01 in reply to Iram_sa

I’m still awaiting a letter or text aswell.. I had a letter that was produce last week from my clinic in regards to steps to take but with how quickly things are moving it is now out of date in regards to some of the advice being given.

Hi - some of the hospitals have contacted their patients and some have been so overwhelmed with Covid-19 patients they have been unable to do this.

We now are not expecting all PCD patients to necessarily receive the letter, but even if they all did, we can pretty much guess the contents by now: stay at home for 12 weeks and follow the government guidelines for the most vulnerable groups.

There is a statement that has been compiled by all four centres which is available on our website to read. This has been written by the doctors across the specialist PCD teams and applies to all adults and children with PCD: The vulnerable are expected to remain indoors for at least 12 weeks but those in the same household are advised to practise social distancing extremely carefully, so it should mean you are still able to go out and get things on your behalf. If you are also affected by something that makes you vulnerable, you could register for support on the government website.

If you need any specific advice it is best to contact your Clinical Nurse Specialist. Alternatively you can contact us directly to the email

Good luck and stay safe.

Lucym712 profile image
Lucym712 in reply to fionac66

Hi Fiona

I just read your response above as I too have not received any text or letter regarding ‘shielding’ do I assume this means I am not classed as extremely vulnerable? I have been taking measures for a 11 days now (took kids out of school early etc) and saw the update on the website on 27th March saying PCD patients will be classed as extremely vulnerable but your response here says now not expecting all patients too be? I have bronchiectasis but no exasperation’s etc and I know we are all on lock down currently anyway and probably would not risk doing anything differently but that clarification might help feel less vulnerable, do you think I should contact my GP?

Kind regards


fionac66 profile image
fionac66 in reply to Lucym712

Hi Lucy - Sorry is this message isn’t clear. If you have PCD then you are classified as extremely vulnerable and should self isolate for 12 weeks.

The only thing is that you may not receive a formal letter.

The aim is to keep you as safe as possible- as we don’t know how pcd patients may react if they do catch the virus.

Hope this clarifies it. Good luck and stay safe.

So I wanted to update on is incase anyone out there may be interested. I did in fact get notifications from gov uk but that was after speaking to my GP who agreed that I should have the shielding guidelines with my history. It was them that then sent info to NHS England as GPs were asked to notify vulnerable patients.

Hope this is helpful Please be safe and take care everyone 🙏🏼

I haven't had a letter as yet. The GP I spoke to said I should have one really but they seem totally clueless as to what is going on and who they are sending information to and when/why. I've not really been out in the last few weeks. However, I have two small children and my husband is still working. We are taking all the precautions we can realistically take but it is very hard and very worrying. I will be very glad when this is all over!

Iram_sa profile image
Iram_sa in reply to Emma_82

Hi Emma, it is scary times indeed but try not to worry. If you are carrying out all the right precautions then that’s all we can do. With the children not being at school it helps not having to worry about them picking virus and bringing it home.

If you are struggling because you cant go out for food shopping (and don't want to risk hubby going-in fact they should take precautions like this too) then do contact GP again and ask to speak to practice manager to contact nhs to get your shielding letter sorted so that the supermarkets have you on their list to offer online shopping slots. You can still register on for support still and even email your MP like I did asking for support.

The less you and your family are out the better. Stay safe and keep in touch if you need someone to chat to.

Iram x

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