Do we all qualify in UK as High Risk and NHS letter?

[Research123]

Hi I am on watch and wait and 30000 lymphaecite cell count, no meds or treatment yet. Does that mean I don't qualify as high risk enough to get the letter and be offered health? And if so does it actually mean I'm not that high risk? Thanks

[lankisterguy Volunteer]

I am not medically trained or in the UK, but here is an opinion from a UK expert (unfortunately no longer with us)

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See Dr. Terry Hamblin’s blog on immunodeficiency

mutated-unmuated.blogspot.c...

-

Len

[Research123 in reply to lankisterguy]

Thank you - I guess we have to be particularly careful. I hadn't realised that be.25 - 50% of us don't make it because of infections. I'm going to be more careful when all of this is over too then

[Ernest2 in reply to lankisterguy]

Many thanks for the reminder of the late great Dr Terry Hamblin.

Note in terms of the write up that the bits about immunoglobulin might not be so important. I don't understand this well, but Justasheet1 explained to me in following post:

healthunlocked.com/cllsuppo...

I think many of us struggle to understand this.

Note though immunoglobulin aside, that Terry also explains the issues we have with B and T cells, which I am sure are recant to a new virus such as COVID-19

Many thanks to all,

Ernest

[Newdawn Administrator]

Hi Research, at the moment we know that people on W&W are receiving the 12 week letters/texts. I’d hang fire because it may be on its way.

Newdawn

[Research123 in reply to Newdawn]

Thank you. Good to know. I've been locking up for a couple of weeks but can't get any of the online deliveries now as they are all booked up. Looking forward to the free meals then - do we get any choice does anyone know?

[AdrianUK]

Some UK patients have not yet received a letter or text. But I would encourage you not to wait to receive your text. It is possible a computer error might mean you don't get it. But these are going out to EVERYONE with blood cancer in the UK no matter what the stage. Watch and wait, treated with Chemo or other drugs, and post treatment no matter how long ago. Have heard from other patients with CLL at each stage who have got them. No computer system is perfect so please don't think that if you haven't got it that it doest apply to you.

Here are the texts (three so far). If you have blood cancer please just act as if you had received them, you can always confirm with your GP at some point if perhaps they dont have the correct mobile number for you

You can and should also register here ticking that you have received a letter (I received a text but ticked yes to the letter): gov.uk/coronavirus-extremel...

Right now I do not have any problems as I am registered with Sainsburys vulnerable person list but I suspect that these lists will be shared with the supermarkets at some point to confirm that people are genuine so for that reason I also ticked that "no" I do not have anyone who can get me food as my family are also self isolating to shield me (this is a grey area with the choice it seems to either all self isolate together or only the vulnerable person fully isolate but then they have to isolate within their house as below:

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NHS Coronavirus Service: We have identified that you're someone at risk of severe illness if you catch Coronavirus. Please remain at home for a minimum of 12 weeks. Home is the safest place for you. Staying in helps you stay well and that will help the NHS too. You can open a window but do not leave your home, and stay 3 steps away from others indoors. Wash your hands more often, for at least 20 seconds.

Read more advice about staying safe at home.

gov.uk/coronavirus-extremel...

————-

NHS Coronavirus Service: Do you know how you will get your medicines while you are staying in your home? You can order repeat prescriptions online via the NHS app or your GP's online services.

Read more information about online services

nhs.uk/using-the-nhs/nhs-se...

Please ask your family, friends or neighbours to pick up your prescriptions from a pharmacy. Just remind them to leave the items outside your door.

The NHS is still here for you - you will still get the care you need, but the way you receive it might change. More will happen over the phone and internet.

——————

NHS Coronavirus Service: Do you live with others? This advice will keep you safer from the virus:

- Sleep separately if you can

- Stay 3 steps away from others at home. Keep away from children

- Only essential carers should visit

- Wash your hands more often for 20 seconds and always before eating. Moisturise if your skin gets dry

- Eat separately, using your own cutlery, dishcloths and towels

- Clean and wipe down surfaces in the kitchen, bathroom and door handles before use

- If you can, use separate bathrooms. If you share a bathroom, use it first and clean between uses

[AdrianUK in reply to AdrianUK]

NOTE: If you have a Sainsburys account and are not on their special vulnerable list yet check now as they have just released some delivery slots for general use in my area. My neighbour who’s not isolating or vulnerable was able to get one. Move fast. They won’t last long. And they may not be in your area.

Looks like they are releasing them sometime before 8am to the vulnerable list and say 3pm or so whatever is left goes general. It looks like they are even registering new people on their website (I also registered for a nectar card since I guess I will be using them for a while now!)

Other supermarkets may or may not be available and it is of course worth checking their slot availability too. I did try and approach several of them via Direct Message on Twitter and/or phone . I am sure that other supermarkets will get a vulnerable system going soon but Sainsburys as far as I can tell seem to be ahead of the game. Having birthdates through the Nectar cards seems to have helped them identify a large group of people (over 70s) straight away but only if they had one of those cards.

Hope many of you manage to get slots. Its definitely worth also persisting with trying to register as vulnerable on ‭0800 052 5500‬. Just tell them you have a blood cancer if you get through as that will be easier for them to understand than CLL and may save a vital few seconds to help them reach others.

You could also try sending them a Twitter direct message listing

* Your full name

* Billing address

* Email address

* Phone number

* Brief summary of your query‬

But not sure that method is working at the moment so I would keep trying to ring (after checking you can't get a slot anyway). And perhaps attaching a copy of the letter or some other way. of proving your diagnosis and/or age. Being 70+ is enough so you don't even have to disclose your condition to them if you would prefer not to. I really hope this helps some of you.

[gillbale]

I live in the UK.

I was diagnosed in October last year so like you am on watch and wait.

What we are being told now not to go to big gatherings - stand away so you catch no germs but go for walks and stay away from people is what my specialist said to me at the time.

I have been doing this and will continue to do this when this is over.

I have had a few "but why you look ok".

Yes I look ok on the outside but it is inside my body where it can't be seen.

We know our own bodies.

My husband and I go for a little walk about 11 PM every night.

We may see one person but they are in the distance.

I hope you do not take this as me being rude but it is just common sense.

Take care x

[AdrianUK in reply to gillbale]

I think the government has said what they have because most of us cannot guarantee such a secluded walk. They have also realised it seems that they need to make the advice much clearer for people to comply with it.

[Research123 in reply to gillbale]

Thank you very helpful advice

[aloneifly]

The text says stay at home. Surely we can go into the garden for those fortunate enough to have one?

[Sepsur]

Further to the text I received yesterday, today I have a letter.

Under the heading ‘List of diseases and conditions considered to be very high risk : ‘

2. * People with cancer of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment....

W&W is still a stage of treatment isn’t it?

[Research123]

Thank you. Yes I guess so?

[Stareye]

Hi everyone,

I'm writing this on behalf of my mum who has has been self-isolating since last Tuesday. She was diagnoised with CLL 2 years ago and is on Watch and Wait (stage 1)

She hasn't recieved a letter or text, is everyone on W&W self-isolating under the high risk category? How does she tell work if this isn't in writing? Thanks

[Research123]

Mine still hasn't arrived but I think the post is running late. As I understand it people on watch and wait are still high risk