My G.P. practice have just refused me a letter even though I have a blood (E T) and a bone marrow) MDS cancer!!!!! I included a link to the MPN advice and the MDS site. Unbelievable!!!!!!
No letter for moi: My G.P. practice have just... - MPN Voice
No letter for moi
Written by
nodmeister
To view profiles and participate in discussions please or .
59 Replies
•
Yes,it is strange.I will not get one either and I have MF.
They can’t refuse you it’s their responsibility to make sure they forward your name.... all gp practices are getting the software to enable them to do this..... I’ll attach another link where it clearly states all mpn are included in the at risk group.
People in Wales will not get this letter yet. Mark Drayford , leader of the Welsh assembly has just been interviewed on Radio Wales and challenged about the letters by Age Concern. He talked about the problems setting up such a database which could be shared with supermarkets due to the sharing of personal information. He hoped it could be done this week and letters would follow. His advice to vulnerable people who believed they should be shielding was to contact local councils and voluntary groups.
So that explains why our surgeries have no clue what we are talking about.
Hi
I am in south west wales and I received my letter on monday. Which is great as I have now informed work and will not be redeployed into Domicillary care.
That's really good news, so it is actually happening in some areas. Especially good for you as you needed it for work, whereas I am retired. I spoke with my haemo consultant yesterday and he said I was not at high risk from the virus, and my GP surgery have no clue what I am talking about, so I think it unlikely I shall receive a letter.
Good luck to you at this scary time.
Thanks. I've already written to them twice, I have a phone consultation with my consultant soon, I'll threaten him with no more chocolate cakes if he doesn't sort it!!!!! My G.P. and I will be having words even though the replies haven't been from him.
Hi all. I have spoken to nhs england this morning and she said all surgeries should have received an email and letter with a template to add patients onto the list and if they haven't they should be contacting their regional team. Rang surgery to confirm this and they told me they hadn't received the email or letter so she will ring the regional team to find out and get back to me. Its taken me nearly 3 weeks to get this far and now feeling very stressed. I will keep you all updated on the progress. Take care and stay safe. X
I haven't received a letter, I have ET jak2. I received an email from Asda saying Govuk have contacted Asda saying I'm vulnerable. Asda mentioned I might receive email from tesco, sainsburys. I received the email from Asda Saturday
Linda
I registered with Gov.uk 10 days or so ago. Still nothing!
My brother in law has had a kidney transplant and he's only just got a delivery sorted with Asda for food deliveries. Couldn't get through to Sainsbury or others to attempt to sort anything out.
Hi, I put through one registration to Gov.uk and heard nothing. I then "re-registered" and it was a much longer form. I have heard back from Sainsburys since then, is it worth you re-registering? Hope you get somewhere soon. I wish someone could say from where these letters are supposed to be sent?
I've registered 3 times in total but the forms have always been the same so I'll have another look. Thanks.
It was exactly the same form I just did....again.
Yes the same for me each time exact6 the Sam form
Glad I'm not the only one to register I've tried twice, felt guilty for doing it second time. Still waiting
I have had two letters, one from Royal Free and the other from Royal Berks in Reading as I split my care between the two Trusts. It hasn't helped with food delivery yet, as still waiting on being added to lists and no idea what I'm going to do about collecting drugs as the pharmacy queues are manic here at the moment! No-one wants the stress of food shopping etc on top of the isolation.
I had no letter as yet, however, my pharmacy I ring them and they deliver.
Keep safe keep well.
I go back to see my clinical nurse specialist in May, phone consultation.
I shall follow up if necessary, however I shall send my surgery an email.
I have been self isolation since the 13th of March, I go out once a day for my walk 3 miles.
I now go out at 6am. This is to avoid cyclists, dog walkers and family groups.
I have reached 67miles.
Wotan10 - 67 miles that's incredible. I just do Youtube videos as I love to bounce around . nodmeister wish I'd seen your answer yesterday, my husband just stood in a massive queue at Boots. He needs to go back for my daughter's meds next week so will get him to sort it out with them then . That's a result.
It's pharmacy2u. I was close. They're so easy. Remind you when it's time to re order. Excellent. Good luck, stay safe.
I've moved to on line pharmacy 4u I think they're called. Delivered by post. Excellent they are too and I have a fair few on prescription or now you have the letters register with Boots and they will deliver free of charge. Good luck.
Thank you. I found your extra information useful as I was not aware of this.
Pharmacy2u not 4u. I was close mind😃🍸. Stay safe.
Hi sorry made a mistake one letter is the one every one gets the other letter I received also from government it’s from chief medical officer saying I have been identified as a vulnerable person this letter can be forwarded to your employer to say you can only work from home and you do not need to go to your G P for a letter it gives information if you need medication picked up also if you need food delivered
I asked my gp about letter yesterday and he replied with a link for gov.uk and insists it’s up to them and not the gp. Can’t win! No letter from anyone I registered 10 days ago too
All registering on the gov site does is get you a delivery slot with the supermarkets. It is definitely up to your surgery to add you onto the list using the template provided to them which you can view yourself if you go on to the NHS england site. Some surgeries are saying they aren't aware of it.
Same with my gp just passing the buck.
apple.news/ACaomPq2nTMS05pb...
Just seen today's press briefing and Raab has said more letters going out from today. Fingers crossed I suppose!!!
I called my go and they have reviewed my case and believe that in-spite of my diagnosis and my medical history, which has included pulmonary embolism, I am not on the vulnerable list. Fortunately I live in a rural area and have family that insist that I self isolate and are caring for me., so I am not pushing it. Take care everyone
Hi nodmeister. Here. In cork in Ireland all consultations are done over the phone
Hi. If you haven’t already done so, try registering yourself on the Gov.UK site as extremely vulnerable. I did and I am now on the list and get priority food deliveries etc.
3 times and counting. Will do it again by the end of the day no doubt!
My friend, who has COPD among several other issues, was told she wasn't vulnerable because she hadn't been rushed to hospital within the last year and she was refused a letter (she is not 70 yet). Her ex-partner who is a nurse went to the surgery and spoke to them and now she has a letter and both she and her son have been ordered to self isolate, meaning her son cannot work. It would seem that some surgeries are deciding on their own criteria to determine those at risk. Try something else, Nodmeister. Stay well.
That is abosolutely right about the Gp surgeries having their own criteria, I have received 2 letters one was sent by my surgery but I know of other people at my surgery who should be sent one but haven't. God only knows what some of these surgeries criterea is. Warm wishes & stay safe.tina.x🤗
I have RARS and ET, similar to you, and I haven't had a letter yet, but I am on some registers like Asda(!) and the parish council. I am at present waiting for my Sainsbury's delivery - an hour late. It's a long time since I've had a delivery so I hope all is well as I'm running out of essentials.
Ask the haematologist. Some gps have no idea about mpns
From personal experience neither do many haematologists.
🤣🤣 Haha, So right.🤗
Tico, Having just read through
a few of your previous posts I am quite taken aback at how similar our experiences with haematologists seem to have been.
Since my diagnosis in 2003, apart from a couple of haems my care has been inconsistent (to choose a polite word) and at times so bad that it has been a source of major stress. I often dreaded appointments and regularly left feeling much worse than when I arrived.
Like you I started going to appointments and saying very little but that becomes impossible after a while.
I have lost count of the times haems have argued with my symptoms and stated that they were nothing to do with my MPN. I am also regularly told that “your counts are normal”(meaningless statement) and that if they are normal you cannot be having symptoms which is at odds with what many MPN experts say.
The classic example of treating the “count” and not the “patient as a whole” even today too often applies.
I could go on but don’t want to
hijack your thread.
K.
No, I absolutely agree with you. Just before I had my second stroke I knew something was wrong and said so to a friend who was with me when I had that fateful last consultation just before the stroke struck. I had mentioned the constant headpains and actually voilently vomited outside the hospital just after the appointment. Within a couple of weeks the stroke hit. The stroke consultant obviously thought their was too much coincedence with my platelets being so high and switched the Aspirin which I been taking along with the Hydrea to Clopidogrel. Sometimes I really believe we are the best 'consultants' when it comes to our Mpn's. Warm wishes.tina.🤗
The local consultant Pavel Kouticek came to speak to my MDS support group. He is a highly respected "top man" and his talk was mostly about your topic. He said that the illness is so disparate and rare that consultants are still learning about it. They don't learn much from the petri dishes. They need their patients to "get over their egos" and tell them about the illness. That is the only way they learn about it. So we have to insist they listen.
This is interesting but in my experience easier said than done. Few haems likes to
concede their patients know
more than theirselves. Too often we are seen as threats rather than partners in our care.
Human nature! But we have to be strong. They only know about the diseases because of many patients telling them what's going on.
I'm almost certain mine has done the same. I have never been given any understanding about this at my surgery apart from one excellent 'female' doctor. Others at the practice are so lacking knowledge about ET JAK2+ and MPNs in general that they refuse to recognise it as something t be concerned about.
I registered on the Sainsbury list and received an email stating they would be contacting my GP to confirm my status. To date, no email back from Sainsbury. I thought being on Pegasys for life would be a reasonable indication that my immune system may not be as normal....whatever that is nowadays.
Does it mean that I personally need to provide Sainsbury with a letter of confirmation of my condition and subsequent medication? Really?
How did you register on Sainsbury list?
Hi. I got the link from this site somewhere. Not certain who sent it but search Sainsbury's and I'm sure it will come up. All the best
I registered on the government list online. I still have not received a letter, but Asda and Iceland have both sent me emails telling me that the government have told them about me. Nothing from my surgery. Sainsbury's delivered to me last night after I went to Customer Support a week ago. There are no slots again today but there were some yesterday that suddenly appeared. I just forgot to check out, so the slot I thought I had saved for next Tuesday didn't get saved. Duh! I think they somehow find slots during the week that they release in little blocks.
I’ve given up on this now.
Phoned the GP x 2 and they said they have nothing to do with letter issuing.
Registered with the government as vulnerable and heard nothing back.
I didn’t want to trouble Guys Hospital as they’ve got enough on their plate.
Thankfully I’ve got some great friends and neighbors that have been helping but do fear for those that haven’t got a letter who may be getting overlooked.
Hello ..sorry to hear your refusal of what of course you should have ...what I have learned about MPN,s blood cancers is that so many health care professionals including GPS have no clue as to what these conditions are .......it’s beyond belief......when I recently saw a clinician regarding another matter.... I had to explain to her what my / our conditions are ...symptoms...treatments etc ....even then she said oh is that the one that makes blood thick ...oh that's nothing to worry about ....this sadly is what so many of us are having to deal with ......whenever I need support with gaining any thing that will be beneficial to my condition( advice ..supporting letter etc) ... I contact leukaemia care they are great and most importantly they understand and are educated in blood cancers ...
Hope this helps ....best wishes ..
Lainie xx
I contacted my surgery to day.
They said you will get a letter from your consultant.
They are behind with notifications.
My next contact Will be in May.
I am not unduly concerned.
It's up to your haematoligist team.
Keep safe people.
Its up to your Gp'p surgery to inform you. I doubt the consultant will inform you, a lot of them are fobbing patients off and saying its your consultants job to inform you. Bet if you phoned the consultant they would tell you its the Gp's job! But I urge you not to phone as these people are overloaded as it is! Warm wishes.tina.x🤗
I've not had a letter either but I'm being sensible and only going out for exercise. My wife is doing the shopping, which all gets sanitized when she gets home.
I was a bit annoyed about the letter to start with but I'm not too bothered now, particularly as I'm a house dad so I don't need the letter for work. With 3 boys at home at this particular time I wish I did go out to work 😂
I did email my Haematologist and he told me that I'm in the high risk group in accordance with the Government guidelines so that's good enough for me.
One of the down sides for me is that I'm on the lifeboat crew in Brixham, Devon, and I've voluntarily stood down for the duration of the shielding period, which I'm finding quite hard but obviously it's best to be sensible.
Take care all
Ian
Wow, a real life hero, stay at home dad looking after 3 boys and a volunteer for your local lifeboat crew. Well done and sending warm wishes to you.tina.x🤗
I finally received a text today telling me that I am an extremely vulnerable person at risk (no letter though) but it does seem that messages are finally getting through (I had originally been phoned by my GP surgery at 9am on 23rd March, telling me to sheild, so it's taken a long time between).
Really hope this gives some of you some reassurance that you probably are in the system.
It does seem that there's so much confusion over this though as I know quite a few people who are extremely vulnerable and who haven't received letters, texts or calls.
One question though - does this mean my 12 weeks have to start from today? I've already been in shielding for nearly 4 weeks.
Only 8 to go for you. Really pleased for you so now when you get a shopping slot you can order my gin🤣🤣🤣🤣🍸🍸. Take care and look after yourself.
Not what you're looking for?
You may also like...
Mutations
As other individuals have said I think of all the questions when I leave the hospital. I have been...
MPN and amitriptyline
Should a GP prescribe amitriptyline to a patient who is already suffering from fatigue due to...
possitive
Hi just have to say what wonderful people you all are.This is the MOST positive sight I have been...
Anaemia?
I have MDS/MPN and was sent for tests initially because the GP who referred me two years ago...
Lyn30
Hello,
I have just joined this group.
I was diagnosed with myelofibrosis last early September,then...
MDS MPN overlap
Newcastle Forum 12/10/18
