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Still no letter - consultant following the advice/Expert Opinion from the NCRI CML Subgroup,

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Hi All,

As mentioned in the title, I have still not received a letter from NHS England advising me that I am 'clinically vulnerable'. I have had CML for just over 8 years, on 50mg of Dasatinib and have been undetectable for the last 12 months.

I spoke my GP practice, who had no idea whether I would get a letter, they recommended that I speak to my consultant. So I did, and as per the advice from the NCRI CML Subgroup (that I presume she had seen online?) she didn't believe that I was at risk as my CML is stable, I'm 49 years old and don't have any other health issues.

However, as per the Leukaemia Care, 'Coronavirus & CML' online webinar this morning, Prof O'Brien stated that Public Health England advice 'trumps' all other advice and that all CML patients should have received letters.

So what do I do now? Ask my consultant to change her clinical opinion and ensure I get one?

I'm relatively lucky, I can work from home and have been since the 9th March (my employers were very keen that I stayed away from the big open plan office). But what happens after my 12 weeks of shielding if I can't provide them with a letter that says I should be staying at home for as long as this takes?

Thanks.

I would be tempted to send your consultant the link to this mornings discussion if its available? Or contact Zack at Leukemia care maybe?

Stay safe & take care

Thank you, that’s a good idea. 

Take care. 

Hi debs,

i will probably get pulled up by more knowledgeable Cml Support contributors on the “not at risk groups” thought, but in my simple ways of looking at this is, why am I on, possibly for life on blood cancer medication (Nilotinib) if I’m not at risk, why not ask your consultant your thinking of leaving the medication (50mg Dasatinib) for a couple of months, your not at risk, so why bother. We are at risk and that is why we are monitored. The term underlying health issues gets mentioned a lot, and we have them.

peter

My consultant spent sometime talking about the need for shielding in a broader risk context: male, over-50 (actually 64), diabetes (albeit well controlled), CML (no MMR yet). I did receive my "shielding letter" and registered at the Government website.  

You have, like me, been forgotten by NHS England, as I am in a similar position, except I am 70 years old, and I do not have work to distract me. I also have other health problems, including asthma. My GP has sent me a letter explaining what I should do, and that i should be hearing, as a vulnerable person, soon. In the meantime, I am relying on others for shopping, and other services. Don’t think I am ungracious, but it would be very pleasant to hear from NHS England!

I’m 71 and had no letter either. I emailed my consultant about this and got this reply....

Hi Dennis,

You are in the vulnerable group and should isolate for 12 weeks. It may be that the letter has not arrived yet. You should practise strict isolation but need to attend any appointments unless informed otherwise.

........

I then contacted my GP surgery and the receptionist just wanted to know why I wanted a letter. She said for me to contact the council if I needed support - and that was it. Nothing since.

so a question, why DO we need a letter?
 

Hi Dennis ,the letter advises you to log onto the yougov site to inform them you are a vulnerable person,if you are unable to go out for food care packages will be delivered every week with essential supplies .Also if you do online shopping at Tesco,Asda etc it can help to get you priority shopping slots .I think you may still be able to register without a letter just say yes when the question comes up , I think it asks for your NHS or patient number can't quite remember which because I registered quite a few weeks ago .Hope this helps ,Good Luck,Denise.

Hi debs, I find myself in the same position as yourself with no letter and as far as I can gather I'm not on the at risk register. I was a bit confused after watching the webinar too as the advise from professor O'Brien appears to contradict that of the sub group, of which he is a member!, I have been shielding from the very beginning and luckily have friends and family who can do the shopping for me. Having the letter or not seems to be causing a lot of anxiety for some, myself included, and we are "all adults" and can make the decision to shield or not. However being denied access to the support provided in the detail of the letter , may force individuals to stop shielding and therefore be at increased risk. I'm at a loss of what to do but will try contacting clinical nurse specialist and request to be added to the list. Sadly this situation is not going to be over anytime soon and it's vital that we maintain as much independence as possible. Keep well, stay safe.

Thanks for that Denise. I did ask the GP receptionist if the letter allows your name to be forwarded to the supermarkets for priority online shopping and she said not. However, we are ok for getting shopping done with our kids able to do it for us. It seems the letter is just aimed at those who have no support at all, which is fair enough.

thanks for your reply. Take care.

Hi Dennis,

Have you self-registered on the government web site, in the absence of a letter? 

https://www.gov.uk/coronavirus-extremely-vulnerable

David.

Hi Dennis,

Thanks for your reply. I feel that I might need a letter to cover me at work, probably at some point in the future when others start returning to the office and I’m still shielding at home. 
My concern is that, without an official piece of paper, I might be asked to go in and possibly put myself at risk. 

Debs

Hi, I’m exactly the same as you. Confused as to why the professor was stating that we should all follow PHE advice (and I am doing that) but then, as you say, he was part of the group who nationally stated that he doesn’t consider some CML patients to be at a higher risk. This is the advice my consultant has followed, hence, I’m not going to get a letter. It’s all very contradictory and a bit disconcerting. 
Thank you for your reply, take care & stay safe. 

Hi Dennis ,your receptionist is very wrong ,the government do pass your details to the supermarkets and they let you know when you have been added and offer you priority slots you have to be quick tho and keep checking they go quickly .These letters are not just aimed people with no support either I have a Husband and grown up kids  .So to anyone who hasn't had a letter please try and register if you need assistance with anything ,help is out there if you need it ,take ,Denise.

Hi Debs,

Read the definition of underlying health issues according to the NHS, these are the people that will be treating you if things go wrong, and  as for your doctor who says you’re not at risk ask them for a letter to confirm that you are safe to return to work.

peter.

Hi Debs

As our condition is clearly articulated in the NHS classification of 'extremely vulnerable',  I believe that, from an NHS perspective, there should be no question that you are entitled to receive a letter and be on the 1.5 million shielding list.

As per the link that was provided earlier on the blog, you are able to register yourself using that link,  then follow this up either via your GP or your consultant. 

That is the process that I used and evenutally a letter plus many follow on texts were sent to me, so I am now on the list. You may also wish to ensure that email address and telephone contact details as well as current address, are fully updated when you register.

It has also been mentioned about priortiy slots for online shopping and the NHS link with the supermarkets,  this is something that I use for home deliveries. However, I would mention that I also registered online with the supermarket first , (I registered with Waitrose and Tesco and received a response from Tesco), so it does seem that there is some communication between the NHS and Tesco regarding the compilation of the list. 

With regard to the question of should we be on the list, there does seem to be different clinical views on that from the different groups. It relates to whether our position is deemed to create immuno suppression or not. Some CML specialists believe that the data on this has is not clinically significant and that we should not be included on the list, others,  including the NHS believe we are at risk and have added us on the list. I observed that some medical articles on our CMLsupport website used an element of differentiation on CML sufferers (for example, it was claimed that if an individual is still within first 3 months of TKI treatment , that they are at a higher risk than normal.)  I guess, as individuals, we eventually take our own view on the degree of risk that may exist between CML and COVID-19,  based on the evidence that we read.

On the basic question of you being entitled to receive a letter , that is more straigtforward and you are fully entitled to be on that list, should you wish to be.

Hope above helps a little.

Best Wishes

Tom 

 

 

 

Thought this thread was the right one just to mention that I also have not received a letter and was assuming I would not get one. I have however, this afternoon, had a voicemail from the National Shielding Helpline, referring to the "letters I have received" - as I say, I have received none - and inviting me to follow the link on the letters should I need help with food or anything else. So, somewhere I am on a list (or perhaps it is the list) - but I don't know if this was because of my hospital records (at the Hammersmith) or my GP surgery's (unlikely as they have left my CML up to me and my hospital doctors for years now).  

I don't intend to follow anything up, nor to take any extra precautions, for all the reasons discussed elsewhere and considering my own situation (undetectable for over 10 years and in TFR for almost 5) I think it's highly unlikely that I have any greater risk than anyone else of my age and general health.  Other people are in greater need of food delivery slots than I am.  However, I thought others might like to know that even without a letter you may well be on the "vulnerable" list somehow.

Keep well all

Richard

Hi Richard, 

I have not had a letter nor any other kind of contact. I understood that it would be from the GP practice I am registered with, as I assume I am identified on their records as part of an 'at risk' group because my haematologist (Prof. Applerley) regularly updates them with my blood counts and PCR results by letter, with a copy sent to me. I do not expect to get a letter any time soon.

I, like you, am in TFR with a healthy Hgb level, white cell and platelet counts so I am pretty confident in my immune response should I develop symptoms.. not that I am planning on that and I continue taking high dose Vit C and D3/K2, as well as using homeopathic treatment to try to reduce my chance of infection!

If you read the EHA CML and COVID Guidelines - added to the post at the top of the page on NCRI CML and COVID Guidelines, you will see that they more or less in alignment, so despite the NHE deciding to keep CML in the 'at risk' group, I remain confident that I am at no greater risk of developing severe COVID symptoms because I have CML. But this is a decision that has to be taken by each of us on an individual basis with a clear assessment of your own risks. There is no certainty in any of this.

Sandy

 

 

 

Thanks Sandy.  I'm following the CML specialist advice and guidance as regards shielding.

For what it's worth, the Shielding Helpline called again today and I had a conversation with them, mainly so they didn't have to spend time following up with me.  They were really only calling to ask, very kindly, whether I needed any assistance with food etc.  It is hard to tell how I came to be on the list but you are probably right, based on what they said, that it was via my GP.  Though I still have no letter.  Anyway, I politely declined to go through their questions today, having explained that as I understood it, for my own personal situation I didn't feel a need to shield, or in particular register to use valuable online food slots.  We are doing click and collect as it is, and it's all been fine so far. It is obviously too complex to have a conversation with them as to why I didn't think I needed to shield, so they suggested I spoke to my GP (for me it would be much better to speak to Jane Apperley as my GP doesn't really know).  In case I was later advised to shield, they gave me a number to call if I wanted to follow up. 

As you rightly say, it is a matter for individuals as to what to do. I mention this just so people are aware that it seems the process of dealing with everyone on the list is ongoing, and they may get a call.

Richard

 

Rather to my surprise I have this morning received the shielding letter from the Chief Medical Officer in Wales. It still says to shield until 15 June, so in my case the 12 weeks shielding is only 5! Fortunately I have a phone consultation with my consultant tomorrow, so a conversation to be had. 20 months into TFR, wokring from home quite happily, and living in a village where I can be in the countryside in 5 minutes. Not sure I'm going to make a lot of changes.

Useful telephone chat with my consultant just now. BCR-ABL 0.01% was 0.02% last test, all good. New bloods to be taken on Monday - they have set up an "in and out" testing service in their ward, so minimal contact. I'll get the results of that in a couple of weeks.

We also talked about the shielding letter. He describes the situation as being too clear cut - they either categorise people as very high risk or normal risk. His view was as long as I am not mingling with others, especially indoors, I managing the risk appropriately for my individual state of health, and that the benefit of my nightly dog-walk (in my rural village and countryside) is important to my overall health. He did recommend that when I get home from hospital after my blood samples are taken, that all my outer clothes go straight into the washing machine.

Hi All,

Thank you for your replies and support. I had a wellbeing call from my GP practice the other day and they referred to my letter. When I told them I hadn't had one (I have previously spoken to them and they advised my consultant would send one), they were shocked. Hence, one has been issued and gratefully received by me today. I'm happy to know that I have this as support in case my employer looks to change my working from home status in the near future.

Thanks again, stay safe and take care.

 

Thread continued from: 
Expert Opinion from the NCRI CML Subgroup, updated 23rd March 2020