Hi, anyone else having issues trying to get on the list of vulnerable patients? I was nearly removed from the Olaparib trial because my Oncologist said I at very high risk fron COVID19. Not having received a letter or text I registered myself on the government website and also contacted my GP who said its nothing to do with them even though the website says to contact my GP. I today received a text saying Id registered and if I wanted to be included on the list then my GP would have to add me. Again I contacted my GP who again said its nothing to do with them. Stalemate..... Ive emailed my MP and rang the Christies who also said it should come from my GP. Stalemate again. Anyone got any other ideas?
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Katmal-UK
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Hi. Mum never received a letter from her GP either but got hers from the Royal Marsden instead where she is receiving her treatment. Have you not spoken to your CSN? I hope it gets sorted
Ive tried speaking to my trial nurse but had to leave message so wont hear until after Easter now.
Arrgh! I was told by rheumatology that I scored ‘ nil points’ even though I am on two meds on the high risk list. Oncology don’t want to know because I am not currently on treatment but my GP says I am high risk! It just isn’t being implemented the same way across the board..... sorry Kathy that doesn’t help but I feel your frustration! I have been shielding anyway.
Maybe a stern word to the GP citing that you might lose your trial place might help? Do you have a practice manager? They are often sensible and practical xx
I had first one from my gp
Then received one from NHS which I presumed was Oncology at the hospital
You have been lucky, I cant get anyone to add me to list even though my Oncologist says I am at very high risk (im on a PARP).
That's why I am on the list am on rubraca definitely down to gp or clinician to put your name forward
Hi babsclunn. Sorry to intrude on your reply to Katmal but I noticed you were on Rubraca. I’d love to know how you’re managing any side effects at I’m due to start Rucaparib this weekend if yesterday’s blood results were ok. I’m not sure if it’s a similar Parp to Rubraca.
I have read some pretty grim reviews if Rucaparib and feeling apprehensive about taking it but I have to of course. I had drastic a platelet drop from 2weeks on Nirapabib resulting in a 3 day stay in EMU for a blood transfusion.
Happy Good Friday by the way
Love Angela xx
Hi Angela yes they are the same drug
I am on month three now started on 600mg a day but fatigue was really bad slight nausea but drinking liquids gave a horrible back taste tried water,juice,fizzy pops as well as tea and coffee but dropped dose to 500mg a day and not too bad
Worse side effect for me is reaction to sunlight
I have very rarely had sunburn and could spend hours pottering in garden
Now have to cover arms and legs wear sun hat as my scalp got sunburn and lather factor 50 on my hands but still caught so limit myself to an hour if sun is out which at the moment depressing with lockdown lol
Hope you go ok with it x
Thank you for replying. I’ve not heard from the oncologist today and I think they’re all on holiday until Tuesday-so I may get the Rucaparib delivered by the chemist. I was enlightened by the fact you’re now getting on alright with it. I hope it’s a success and you continue to stay well. I’m an older lady and sometimes wonder if they would be tempted to shelve me but after getting the news yesterday that I will probably be starting them this weekend have me hope.
Lots of love and a very happy Easter xx
PS gutted about not being able to sit in the sun but if it keeps us alive fake tan is a good second best xxx
You may be lucky and not have a reaction to the sun
I was bit gutted as when they said 12 weeks lockdown wasent too upset as I could still get out in garden which I can only do if its overcast now lol
Let me know how you get on with it xx
Yes I will xx
Exactly the same here! Although the government have let the supermarkets know? And I know have a guaranteed delivery slot with Asda (not my chosen one but the one who has slots!)
I called my GP again this afternoon, and the receptionist said that they are collecting names but can’t do anything until they(the GP) have a text from the government!
Just feels like I’m going round in circles! Also requested to have my prescription delivered 2 weeks ago and haven’t had any delivered xx
Sorry to hear that, your lucky, I cant get any delivery slots. I have my daughter. for food shopping but if anything happens and she cant then I will have to risk going out.
Have you registered on the government website? That’s all I did and heard from Sainsbury’s first and then Asda...after about 4 days x
Yes registered but until my GP (who say its nothing to do with them) then Im not eligible for any assistance... I may have to take a huge risk and just become a statistic ...
I have received an email from when I registered on Gov.uk today saying my gp as to submit my name on to the list
Am already on it as local council phoned me today to see if I needed assistance with food shopping or medication while on 12 week isolation
Dont think one hand knows what the other is doing but it definitely states gp as to submit your name x
Hi Kathy, I had the same problem as you. I am on the Icon 9 trial at the Christie. I received no letter, so registered myself on the government website and phoned my gp. I was also told it was nothing to do with them. However, I have since had a call from Sainsburys telling me I am on their list for priority home delivery and text from Iceland saying the same. I am thinking that was because I registered on the government website. I am shielding anyway. I live in the midlands by the way.
Ive registered but had a text to say I need my GP to add me before I can get ANY help ( i am lucky my daughter and son in law get me groceries but if they cant Im stuck). My GP just keep saying its nothing to do with them.
Ignore my previous question. When I registered I said at the moment I had someone who could help me (my hubby but I also have 90 & 88 yr old parents so am trying to keep him away from people as much as I can! x
When did you register? i registered right at the beginning and only received a text today saying if I considered myself vulnerable to speak to my gp (id already done that and been told it was nothing to do with them)
Hi, I registered myself on 31st. I have a daughter nearby who can drop off shopping so did not require help. I presume I must be on some register because I have been told by Sainsburys and Iceland that I can now get priority for home delivery. I haven't had any communication from government other than the letter everybody got. I haven't bothered contacting my doctor's surgery again. I hope you are able to get this sorted out quickly. Suzanne x
Thanks, thats the problem, I havent had a letter and my GP dont want to know. I registered on23rd and have only just received a text to contact my GP.
Sorry! I registered right at the beginning too, but then did it again as I’d heard nothing! Then I got the supermarket communications, maybe try it again?
I hope you get it sorted soon x
Ive tried registering twice but only just received a text today saying to contact my GP who dont want to know. so as I said in my post Stalemate!
🤬 xx
OvacomeSupportPartnerMy Ovacome Team
Hi Katmal,
I am sorry that you are experiencing difficulties in getting on to the list. We would usually suggest speaking to the Practice Manager at your GP's surgery, or to your medical team at the hospital, but as you have already contacted both, I have looked for other sources of advice.
There is a government helpline that you could call on 0800 028 8327 to tell them the problems that you are having with registering, or you could try speaking to the PALS (Patient Advice and Liaison Service) that covers your GP surgery? You can find their details here nhs.uk/service-search/other...
I hope that this is resolved quickly for you, but if you continue to have problems, please do give us a call on 0800 008 7054 and we will see if we can help.
Best wishes,
Laura (Support Services)
Thanks Laura, I'll try those avenues.
I tried that number Laura but as soon as I said I hadnt received a letter they said the line wasnt for me and disconnected call.
Hello Katmal-UK
Thank you for letting us know. I'm sorry to hear that it was so difficult for you to make sure that you were added to the list and glad to hear that your MP was able to help.
Best wishes
Julia (Ovacome Support Services Officer)
Thanks Julia.
Other than GPs surgery all the links & no’s don’t apply to Scotland! I'm in the Highlands 45 miles from the supermarket & cant get a delivery slot ... 4 weeks, no food delivery... this is crazy!
Thats soooo bad. Try yr MP and your local council. Hope. you get sorted. x
Hello Alibee2
The advice from NHS Scotland is available here: nhsinform.scot/illnesses-an...
NHS Scotland have written to highly vulnerable people. The advice on shielding is here: nhsinform.scot/illnesses-an...
If you've not received a letter they recommend contacting your local authority shielding support line, details here: gov.scot/publications/covid... This will help with arrangements for food and medicine deliveries.
I hope this is helpful. Please do get in touch if there is further information you need.
Best wishes
Anna
Ovacome Support
You might need to contact your MP!
Hi Kathy,
I’m pretty shocked you’ve been taken off the trial for Olaparib. Will you resume it after the Covid has calmed do you think?
I can’t get any shopping slots either yet I know of people who don’t actually qualify still getting shopping delivered!
I do hope you get some support ASAP. My GP actually telephoned me to ask if anyone was helping ( a couple of friends are for now) so your GP should be helping you.
I hope with all my heart things get sorted for you soon, you are such an inspiring lady to all of us on this forum.
Denise xxxxx
Thanks Denise, Im still on the trial, they wereconsidering it. Im changing my GP soon as this isnt the first time Ive had problems. They refused to give me antisickness pills, after all why would I need them? cos im a cancer patient.... Are you? came the reply lol
Hi Kathy, phew, I’m glad that your Olaparib is still being prescribed as you are doing so well on it. I’m glad too that you’re going to change your GP Mine is new to the practice and couldn’t be more helpful. I’m totally disgusted at the way you’ve been treated!
I have plenty of anti sickness tablets if you need some sending to you? ( I’m on Olaparib too and take them some days but not others).
I hope things are resolved for you soon.
Love Denise xxxxx
Told to contact GP ,this was March 29th. Given up now just going round and round in circles with no one listening. Live on my own but managed to get fruit and veg delivered from a local company. on the plus side did have my second chemo last Wednesday.
Frenchhouse3 in reply to
Hi there, I was just saying to Kathy that my doctor phoned me to check that I was getting shopping done. It is their job. Hope you get some joy soon!
Good luck with the chemos too.
Denise xxxxx
Thats so bad! I cannot believe how you have been let down x
Just to say we are in this together, but wishing you luck
I think it’s disgraceful that the right hand doesn’t know what the left is doing - my own GP practice have never been on top of my care so I’m glad I’m not needing their input - I’ve friends who have had the text and letter despite no obvious need and others struggling like yourself to get acknowledgment that they are high risk - I hope that you can get it sorted - I’m assuming there must be a similar Pals thing for GP practices that you could approach to complain x
Just spoke to my sister shes a practice manager apparently alot of gp surgeries are waiting for confirmation letters of which criteria they are clashing as highly vulnerable from Gov.uk
Once they receive these they then process any patients on their books in these criteria
They were told to expect the correspondence by Friday
Hopefully once your gp receives this he will put you on list x
They wont, they wont even acknowledge I have been battling cancer for the last 12.5 years.
Hello
Everyone seems to have had the same problem which I also had! GP not interested last week said they were now having to produce a list for the Gov! I did ask how they thought the Gov would know who was vulnerable if the main cog doesn’t tell them! I spoke to my CNS who had heard this several times. Her advice was as expected which was you are at risk and you need to stay inside for 12 weeks. I have already done 3 when it was clear what was coming so I started! Miraculously yesterday I had messages and emails from Gov and supermarkets and contact with the Council. Looks like my GP list made it to the Gov!
Good luck!
Cheryl x
When I first heard about the virus I was self isolating and cause some of my family work for the n.hs. they said because of my auto neurtophenia I should of got a letter about shielding so rand g.p receptionist said to phone n.h.s 111 so I did just an answer phone that did not help then the next day got letter from boris then day after a letter saying I was high risk from the doctor but the gp could not tell me this so I could be putting myself at risk I now down three weeks on my own thanks from my family hope everyone is keeping safexx
Thanks Cheryl. Ive just heard from my MPs office, he is working to get me recognised as very high risk.
Hi Kathy, sorry to hear that things are much harder than they should be for you. I was lucky to receive a letter confirming I was on the list, but so far none of the supermarkets are recognising the fact and I can't get priority delivery slots so having to wait weeks for food deliveries.
I'm on the ICON9 trial and had a telephone consultation with my onc on Monday. There was no talk of halting the trial and I was told to go to the chemo unit for blood tests and observations on Wednesday. He said I could then collect or send someone to collect 2 months worth of drugs on Thursday. I was frightened going to the hospital as I'd not been out for 3 weeks and didn't know what to expect, but all nurses that I met were wearing basic masks and gloves and there weren't many people about. Unsurprisingly my blood pressure was up. Anyway, yesterday I sent my husband to collect the drugs and he came back with only one month's worth of olaparib and cediranib. Nobody at the chemo unit knew why there was only one lot. The prescription said 2, but someone had crossed it out.Pharmacy was shut and a nurse said she'd ring on Tues. I'm worried that there is a problem with the supply of olaparib and cediranib. Have you heard anything like that?
Good luck with your battle with your GP although it sounds like you do indeed need to find another one.
Bug hugs, Nicola x
Hi Nicola
My hospital pharmacy delivered to my home x
Well that is a good service! There's no consistency across the country is there?
Nicola x
Hi Kathy - sorry to hear you are experiencing such awful difficulty. Have you tried emailing your doctor about being added to the list. I sometimes find you get a more positive response if it is in writing, you will at least then have there reply of why they can't help in writing. My husband received the same text telling him to contact his doctor after I registered him because he didn't receive a letter although he has COPD. I read yesterday that the "list" is compiled by NHS digital and that thousands of people have been left off the list in error.
If possible have a Happy Easter 🐥🐣
Katmal-UK in reply to
Hi lyn, did that at beginning and got a. snotty email back.
in reply to Katmal-UK
Disgraceful, when I had heard nothing after registering my husband everything I read online to resolve advises you to contact your doctor. I gave up as I did eventually get a letter and supermarkets have offered me priority slots, still not easy to get one though as they don't guarantee you will be able to.
Vulnerable pets being ID in three phases. First phase by NHS digital by searching medical records, second phase now underway where GPs can ID pts and this includes pts notifying their GP. So GP can now add you to the list. They can see the advice on ID vulnerable pts on NHSE website.
Not much help when my practice wont acknowledge Im a cancer patient on a trial drug x
I'm afraid getting the letter doesn't help much - I got the letter but still can't get delivery slots! Eventually got through to Waitrose who gave me an email address to write to with a photo of the letter which I sent but just got a standard reply.
I would concentrate on trying to find small local companies who might deliver food especially if you can talk to them and explain how vulnerable you are. Good luck
I’m so shocked you have such an unsupportive GP practice manager, it really beggars belief doesn’t it?
You really need to contact PALS, their contact details will be on your local NHS trust website. You can also contact the Care and Quality Commissioner at your trust who should look into this on your behalf. Many doctors surgeries are private businesses who have a bottom line to satisfy and I believe that this can sometimes effect the quality of care they provide, (I had some experience of this with my lead GP but got it sorted) but they have a legal duty of care to give you the best and most suitable treatment.
We hear so much here about doctors who distance themselves from arriving at our initial diagnosis and we also hear about some really clued up doctors too. Your practice is, in my opinion, failing in their duty of care towards you especially given your medical history. I find it particularly difficult to stomach when we get stuck with non medically trained staff making potentially life changing clinical decisions regarding our health, your practice manager is, in my opinion, making decisions way outside their remit especially that given their actions and, by dint, those of the practice are the ones stopping you getting the status you need to be able protect yourself.
These are unprecedented times and as a result some procedures are skewed and take longer but you need this dealing with as a matter of urgency. Could you request a telephone consult with your GP to put your case forward for being categorised as being at risk?
I hope you get resolution very quickly Kathy, it’s scary enough at the moment without this added issue for you.
Take care lovely lady ❤️Xx Jane
I went through exactly the same although my GP agreed I should be on the list but said they didn’t have the letters from the government! Eventually my doctor on the clinical trial team wrote a letter for me and I received it yesterday.
I’m on Olaparib too. I had the govt text and letter over 2 weeks ago. And follow up cal from GP to check that my cancer hospital are sorting the drugs. Also a second follow up from nurse at the GPS yesterday, reminding me to stay in. So an amazing job.
Can you find the govt note that has the bullet points of those at risk where PARP inhibitors are mentioned? Should be on gov.uk. Surely your GP would put you on with that evidence.
My husband is doing all our shopping so I think it would only be sorting that if I didn’t have him. Other than that the rest is down to me to be sensible.
Good luck x
Could you try sending a copy of letter to your GP
Kathy, I’m so sorry to hear that you are having a nightmare with your GP surgery. They sound absolutely bloody awful.
Relieved to hear your Olaparib treatment is continuing, but that was a close call.
I’m shocked and horrified that your GP is completely ignoring your plea of help and washing their hands of any responsibility or willingness to help you. It’s a disgrace.
You’re doing the right thing changing your GP. Let’s hope your email to your MP can sort this out for you. I hope your MP will also put the situation right with your GP.
All the best
Lisa x
My initial contact came in form of letter from GP surgery. This was followed by a government letter and leaflets about how to go online and register.
my GP doesnt want to know.
Hello darling,
Sorry things are crap for you at the moment, I haven’t read all the replies from your post, so Im sorry if I am repeating.
Have you tried getting your oncologist or member of your team getting a direct call to your doctor?
My husband has Parkinson’s and cancer and we have in place now a weekly slot with a supermarket and also a weekly foodbox for one delivered.
Even though I am here, I have been dissuaded going out in case I pass it on and my daughter is expecting twins and son in law has had pneumonia so they are both high risk.
I hope you get it sorted soon,
Love,
Carole xx
Hi Carole, hope yr coping ok, im good, all sorted, I complained to my MP and he sorted things. Yet to get a delivery slot for food but ok at mo. Stay safe xx
Sorry to hear you are having trouble with this. I wish I could give advice but it's the first time I am hearing of this letter or website registration process . Is this only in the UK? Us being in Canada I might be out of the loop. Wondering if my mom needs to do what you are attempting, however frustrating for you. 😕. Keep on trying like a sqeeky wheel.
I am on the list but I’m the opposite and want to be taken off it. I don’t feel any more vulnerable than the next person, I’m not having treatment now and am not immuno suppressed. I feel that being on the list would limit or at least affect my treatment options if I contracted Covid-19. No doubt this post will be edited once again!
Not sure what you mean by this post being edited once again? I dont think being on the list affects treatment options if you contract Covid 19, I fully accept that if I contract it I will be given treatment though if someone is likely to benefit more then they will be treated ahead of me.
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