Bronchiectasis and 'Shielding' - British Lung Foun...

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Bronchiectasis and 'Shielding'

CYMROBOY
CYMROBOY

Is Bronchiectasis a reason for being placed on the shielding list whatever the severity? Much is made of COPD and Asthma in the Gov Guidance but it appears that Bronchiectasis is regarded as simply included in the vague catchall of 'severe respiratory diseases'. I was diagnosed with Bronchiectasis over 70 years ago. I am now in my 82nd year and live in Wales. I have not had a shielding letter (but they have managed to wrongly address more than a few thousand !).My GP surgery tells me that I am not on the list for shielding. A query to BLF on the status of Bronchiectasis in this respect appears vague and non-committal but suggests that there is clinical reviewal that may result in a second issue of letters. The guidance is also vague on who originates and decides who are to be on this list. and Do the GPs have an input into the process ?

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On would think that anyone with a lung condition would be on the list all those who are moderate COPD can only be a few percentage points from being severe. From my understanding the list is being updated as more is known about the virus.

CYMROBOY
CYMROBOY
in reply to Badbessie

Thank you for your useful comments

As I understand it from government sites, a second listing of vulnerable people is in process. I have lifelong bronchiectasis and am in the shielded group. To be included a person with bronchiectasis needs one of the symptoms associated with severe copd such as breathlessness and difficulty keeping up with others when walking. You also need to use a nebuliser for medication or to have been hospitalised with it at some time.

My sister worked out of a GP surgery for years. She tells me that there is a code which is on GP records and this was harvested by the NHS to determine who was considered at risk. Of course, some GPs ommitted to do this, not only with bronch. I would take it up personally with your practice manager. There is a government website which they can access to refer patients who have been overlooked. Details from Dr Hilary on yesterday’s Good Morning Britain.

At your age and with that lung damage you should definitely be shielded. As usual with bronch you will have to be extremely pro active and assertive.

Good luck

CYMROBOY
CYMROBOY
in reply to Littlepom

Many thanks for your excellent comments. They reflect much of my own thinking on the matter. Sounds as if we are both lifelong fellow travellers with the condition. Although COPD and Bronchiectasis can exist together, they are also quite distinct and different conditions. Breathlessness in relation to activity can vary enormously in Bronchiectasis. The whole matter of 'severe' is subjective and very open to interpretation.

Much is said of COPD in the Gov Guidance, perhaps to the detriment of Bronchiectasis. Thanks again for your advice

CYMROBOY
CYMROBOY
in reply to Littlepom

The NHS Digital document - 'Covid-19 - high risk shielded patient list identification methodology' identifies currently two groups described as (1) "at risk" - a large group (circa 19 million) normally at risk from influenza - should practice strict social distancing ; (2) " at high risk" - a smaller sub group (circa 1.5 million) defined by CMO - should practice complete shielding. Presumably CMO is Chief Medical Officer NHS.

This second group is now the 'Shielded Person List' (SPL) renamed from Vulnerable Person List (VPL). Those on the SPL receive ' the letter' from the NHS. The methodology makes no specific mention of Bronchiectasis. Presumably we Bronchi patients form a part of the catchall of 'severe respiratory disease'. It is reasonable to conclude that we are too small a group to be mentioned. ( I seem to remember seeing the figure of 50,000 categorized as 'rare', perhaps someone can confirm or correct this).

It appears that that some Bronchi patients are on the SPL and receive the letter, others are not. It is reasonable to conclude that a decision is being made somewhere either at NHS level or GP level. The identification methodology leaves plenty of scope for error not the least of which is the loss of medical history and the methodology appears to rely strongly on that history. (My own medical history over 70 years has passed through 6 GP Surgeries plus the digitalization and my last hospitalisation was over 20 years ago). The methodology appears to indicate hospitalisation requirement within the last 14 years.

Covid-19 is a lung specific virus and since Bronchiectasis indicates lung damage to some degree or other, the virus represents a high risk to ALL such patients whatever the clinical measure of that damage. It follows that it would have been much safer and indeed logical , to have placed ALL Bronchiectasis patients on the SPL. I intend to make such personal representation to my GP. There is , however, a much wider issue here and one is left to ponder whether BLF has a view to express and a potential lobby at NHS level.

I have a chart which outlines the points system which is how they work out your risk. It says "pre-existing lung

disease", but doesn't specify which, or how severe. You get 1 point. You need a score of 3 to be on the shielding group. The chart is a .pdf . It would be so helpful to everyone on here.

nras.org.uk/data/files/COVI...

Thank you for your comments. The points system is not really applicable since a 'pre-existing lung condition' alone would never get past one point!

digital.nhs.uk/coronavirus/...

Here is how the data was originally trawled to put people on 'the list' it is being updated and Gp's have had since the 06/04 to add or indeed remove people from the govermnet data base.

CYMROBOY
CYMROBOY
in reply to skischool

Thank you for your information. Strikes me as bureaucratic 'heavy weather'. Little wonder that the list is a bit of a shambles. There's much to be said for 'Keep it Simple' When it comes to Bronchectasis some will be 'on' some will be 'off'; a matter of appearing on one record or another depending on how much one has bothered the system and/or your local GP. All in all it leaves a great deal to be desired

skischool
skischool
in reply to CYMROBOY

It would have been better if they had started from the bottom and involved Gp's at the onset,but as you know PHE seems to be calling the shots and think they know best,which doesn't give me much hope for things to come?

Do u go to a consultant at hospital over bronchi I’m same 74 years had it since a child a surgery to take a way a lobe I can tell you be very carful I’m getting over Pnewmoner had a virus hospital said could have been covic as showed up same as infection so please be carful keep away from people to b safe x

CYMROBOY
CYMROBOY
in reply to Redrum46

Thank you for that Redrum. Will try to keep safe. GP has not acknowledged my letter let alone given me a reason why I should not be on the list. Interesting to hear that you had surgery for Bronchi. It was contemplated in my case and parents gave permission but Thoracic Surgeon decided otherwise. Keep well and stay safe

You to and get on list x

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