Letter from NHS? Essential Thrombocythaemia

Hi I’ve just joined :blush:
Been on hydroxycarbomide now for 19 years with ET. I was wondering if anyone in a similar situation to me had received a letter from the NHS?
Thanks in advance :blush:

Denise

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I have not received a letter I have ET and on hydroxycarbamide (low dose chemo). So it makes me very confused as to what I should be doing. I suppose my gut feeling telling me to shield for 12 weeks, but without letter giving us priority with shopping and medicine deliveries, it makes it difficult to adhere to. I am also in vulnerable group due to my age, but find getting an online available slot now impossible although managed to book one last couple of weeks, which I booked some weeks ago. Some clarity would be so good.

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Meant to say on line shopping slot!

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Hi Denise. I cannot help with your question but you have found the right place as we are all here to support each other through these extraordinary times. I am in total isolation, I have CLL. and my husband in self isolation. Some people seem to have received letters and others not. However we all seem to share similar anxieties, practicalities, thoughts and feelings. Also the marvellous Bloodwise is there to inform and support us, their details are above. Stay safe and please let us know how you are.

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Hi and also welcome to our community forum, I think we are all living with uncertainties and confusion at the moment and that is leading to stress and anxieties in my case. Some of us have received letters and other have not. I cannot tell you what to do as I am not medically trained, but I always go with my gut and the most important thing is that you keep yourself safe. If you, like me, are over 70 you can register on the gov.uk website which might give you priority with some home delivery supermarkets. I know Sainsburys, if you are an existing home delivery customer, have information on their site to follow and if you manage to talk to someone if you say your age and that you have a blood cancer you might be prioritised. I think everyone is floundering a bit at the moment, this is unknown territory. The wonderful Bloodwise support line is there for us all and their details are above. Please keep posting how you are doing, we are all here to support each other, Take care.

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Thankyou all for your lovely replies! I’ve now developed a shocking cold and can’t stop sneezing with a bad headache… shall keep hidden in my bedroom today I think :pleading_face: x

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@DeniMoor Hi there Denise! wishing you a very warm welcome to our online forum :smiley: :wave: I’m so sorry to hear about your cold and I hope you feel better soon!
How is everyone? it’s really important questions you all ask. Our current guidelines around the 12 week self-isolation period would also apply to people living with ET. The guidelines also apply to anyone on form of chemotherapy, even though hydroxycarbamide is a mild form of chemotherapy, our guidelines would also apply here. But we do recognise there can sometimes be some individual variation amongst people. This is why we also encourage people to speak to their treating team for advice based on their individual circumstances, they have the fuller picture of you as an individual, your current state of health and your overall medical history. @DeniMoor @Lindatyrer have either of you had the opportunity to do this at all?

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Oh, Denise, I am so sorry that you have developed a cold, take lots of special care of yourself and I know when I get a cold I feel ‘down’ emotionally as well as physically, and it take me a while to build back up again, so please keep posting how you are feeling, we are all here to support each other. Take care.

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I’ve had ET for 21 years, and on hydroxycarbomide now for 6 years, I was told letters would be issued and posted out last week, but I don’t have one. really not sure about getting groceries. I’m just a bit too young for the over 70’s
I have put a call into the haematology dept, but I expect they are very busy at the moment, it’s the not-knowing which is worse,
take care everyone

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Hi, so glad you have found our community forum and I expect you have seen many posts from people with different blood cancers also wondering because they have not received letters. All I can say is my personal experience, knowing that blood cancers were actually specified when the government said about isolation I managed, with great difficulty, to get hold of my regular home delivery supermarket and said I had blood cancer and was isolating as the government said and they put me priority home delivery service. I realise all supermarkets are working differently. The Bloodwise website is giving up to date information and the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm. Please do keep posting we might all need to support each other through these isolated, unknown times. Stay safe.

Hi @heatherthomas, welcome to the Bloodwise forum!

As you know, members of your clinical team will be the best people to speak to about this, so it’s really good that you’ve got in touch with them and I hope they get back to you soon so you can feel clearer about your situation.

In case it’s helpful, there’s some general information around Coronavirus for people with MPNs such as ET, on this page of our website - https://bloodwise.org.uk/coronavirus/coronavirus-and-blood-cancer under the Am I High Risk? paragraph.

You may wish to register as someone who is extremely vulnerable https://www.gov.uk/coronavirus-extremely-vulnerable on the government website, so you can get support with things such as groceries.

How are you coping at the moment @heatherthomas? I’m glad you’ve joined this forum and I hope you find it really friendly and supportive.

All the best, Alice

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Hi. I have just joined. I was diagnosed with CML in November. I got the NHS letter a week ago plus further letter today from my haematologist saying that I have been classed as Category B, higher risk group for blood cancers and someone who needs to put in place “stringent measures for self distancing”. Has anyone else with CML received this kind of letter?

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Hi Sally, you have definitely joined our community forum as we are all here to support each other through these scary and confusing times, let alone for the practical problems. I am generalising into all blood cancers, but you have 2 letters and many others with blood cancer not receiving one as yet. I am very impressed that your haematologist has actually written to you and it just shows you how caring they are. I have not heard of this before, but please do not be more concerned because you have 2 letters. However this site is the place to air all fears and concerns and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk. The main thing is that you stay safe, we are all very special people.

@heatherthomas Hi Heather, just checking in to find out how you are doing? I hope the information from my colleague, Alice, was helpful to you?

@Sally Hi Sally, welcome! how are you doing? I hope I can reassure you, it is very normal for some people to have received two letters. Because depending on the NHS trust, some local healthcare team have chosen to send an additional letter, to the one that has been sent out centrally to anyone identified as high risk. The additional letter is not to give any new information or different information, it’s just that some trusts have opted to do this, others haven’t. Hope this helps?

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Not received any letter up here in NHS Grampian. Have had ET since 2013, been on 1000mg hydroxycarbamide ever since with platelets steady around the 600 mark and no serious side effects.
Living out in the wilds, the official advice often seems a bit dubious - we could walk 10 miles in any direction and not see another soul, but online deliveries are not that easy to arrange. For now, relying on local resources and rigorous social distancing, so not sure what the official letter would add.
Presumably as the incidence of COVID rises over the coming weeks, so will the chances of infection, so relaxing of vigilance isn’t an option.
DickM

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Hi @DickM I hope you are doing okay? We were informed that NHS Scotland started to send out these letters slightly later than NHS England, so this possibly maybe why there has been a delay. Have you been able to speak to your healthcare team at all? Hope the local resources have been helpful to you?

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Hi, I heard today that the letters in Scotland hope to go out by the end of this week, but so many in England have not received letters either. As you say you actually know what to do to stay safe and what would the letter add except telling you that you are advised to isolate for 12 weeks and extra advice. It might however help with home deliveries (if you can get one) and offers of help from your local authority, local support or charities. Yes, we need to keep safe and perhaps support each other through these unprecedented times on this forum.

Thanks for good wishes, SubloodcancerUK (Ooops - started typing bloodWISE. Must correct muscle memory!) and Erica. To be honest, my feeling is that common sense and availability of data about the virus are probably as valuable as any “official” letters or actions, which have to be drawn up to allow for all the worst-case scenarios. As a result, they may make life more difficult/unpleasant, and no less risky, in certain circumstances. As an example, the “only go out once a day” suggestion makes no sense whatever in a rural area like our’s, if one takes sensible precautions. Careering down the path behind our house flat out on my mountain bike clearly would not be wise, but walking down there, or up the road where the only other movement is tractors is probably almost safer than risking tripping over rugs/the cat/trailing flexes at home!
There was a very useful interview with one of the Scottish health supremos (Jason something) on the radio this morning, where he outlined the transmission pathways for the virus, and steps to take to eliminate, or at least radically minimise the chances of transmission. The Institute for Biology has a page which details all the information they can gather from current research, which is also very useful, but does require some scientific literacy.
Unfortunately, some of the official information is not always accurate; a friend passed on an apparently authoritative piece from Johns Hopkins University in the US, which contained one error that was obvious to me. Running it (digitally!) past my chemist daughter picked up several more. Suspect it had been re-written by the University’s PR department to make it more reader friendly without being rechecked. So we need to be careful.
Will be interested to see what the official communication says when it comes.

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I think Su is correct in just being sensible. I’ve had one of the letters but living in a house with three other people some of the guidelines are unworkable as I can’t very well dictate to the other three how to live their lives. I also think that even with the letter, one shopping trip a week at 7 am to the Sainsburys around the corner when no one else is on the streets is ok to sort my shopping needs out. It also might help my sanity. The shops now take precautions and they are giving a good steer on this now. I’m not sure I want to go with the official NHS help as there have been reports of completely unsuitable food parcels like someone getting 12 Crunchie Bars, a load of Gingernuts and an onion! Sainsburys aren’t allowing anyone else to register for deliveries now anyway, so there wouldn’t be a huge point. It’s an unknown situation though for all of us and we should all compare notes and let each other know what works and what doesn’t. This forum is invaluable for that.

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You’re right Erica, many people haven’t received their letters, which is understandably causing confusion.
According to NHS England, the process of sending out these letters to the cohort of high-risk people, has taken longer than anticipated, so some people may still be receiving them.
We’d encourage anyone who hasn’t received a letter but is confused as to whether they should have received one, or who hasn’t received one but feels they should have, to get in touch with a member of their treatment team, such as their clinical nurse specialist, consultant or GP.

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