What could possibly go wrong !!!
Yes I saw this, wonder how smooth this transition will be from CMDUs to local GPs/PCNs. I’m especially interested to see how and where my local PCN will organise sotrovimab IV injections (I’m unable to take Paxlovid antiviral tablets due to contraindication with my kidney disease)
Hi @Ted369, please be assured that we have advocated for the blood cancer community in consultation with NHS England, shared our concerns, and will be keeping a close eye on this transition. Those eligible for an assessment for covid treatment upon a positive covid test, should get a letter about this in the coming weeks.
Whilst we don’t have specific details about what the process will look like as it is managed by ICBs (integrated care boards) and is likely to vary depending on where you live, we’re here if anyone wants to talk things through.
Thanks for the heads up on this. I have no confidence in the ICB here as the vaccine rollout this spring has been inadequate and chaotic, completely ignoring the immunocompromised. I have had to be my own advocate despite being invited to book by the NHS I could not book locally.
Received my email today
I don’t have much faith in getting through to my GP surgery within an hour
It’s a super surgery and the reviews are shocking as are the experiences of friends
I will contact 111 as they were very helpful when I caught covid in 22 as were CMDU both very quick to respond but trying to get through to GP took an hour in a queue
I had also used the on line portal to try to speed things up which wasn’t responded to until after the event
I think GP surgery should have a direct number for CEV and covid positive or email that’s quickly contactable
Today I had a consultant app and I was anxious about asking him to wear a mask.
I was in the room before him and he came in and asked how I was and I said anxious about being in the unit with no face masks
He asked if I wanted him to wear one to which I replied yes please if you don’t mind
He didn’t reassure me that it was ok and he went and got one then continued to tell me how they don’t have to wear them anymore and there isn’t any proof they work to which I replied well they have for me and I’m still shielding and it was left at that.
I think he wanted to say more on the subject
I wish he would accept that I’m shielding and that it’s ok to ask him to wear a mask
Hi all, we just wanted to share that our Health Info team have added information about the local instructions for the different Integrated Care Boards (ICBs), across the country, to our webpage here - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK
You can use the drop-down menu on the above webpage to find out what you should do in your area as soon as you test positive for covid. You should follow the instructions for your local Integrated Care Board (ICB) – the area where you are registered with a GP. (Find your local Integrated Care Board on the NHS website.)
Hi All, I’m just recovering from Covid. I tested +ve on 25/7/23 and contacted my GP about antivirals, and they contacted the hospital. I received a call from the hospital the same evening saying that the rules have changed in the last couple of months and they are only offering antiviral therapy to patients who are currently receiving chemo or have had chemo in the last 12 months which rules me out. I appreciated the swift call back. It’s 14th day today and I tested negative yesterday and today but am still coughing and spluttering, and feel very tired. This seems to be the norm. Just thought I would share this with anyone who is in the same situation and if you are, hang on in there. We will get better.
Great to hear from you again @Strad and I am really sorry about your Covid experience.
However I believe that you were told the right thing, rules have changed.
Also your testing positive for about 14 days but being left with coughing and spluttering and feeling very tired seems par for the course.
However if your symptoms persist perhaps contact your GP.
Take care and be very kind to yourself
Hi @Strad, sorry to hear about this - wishing you a speedy recovery, and as Erica said, do keep your team updated.
We’ve produced this document with the British Society for Haematology to aid understanding of the eligibility criteria at covid medicine delivery units around the UK. It was up to date as of July 2023: Blood_cancer_and_covid_medicines_UK_July_2023_Pc44Sr4.pdf (cdn.ngo)
It explains the eligibility list, for assessment for post-exposure covid treatment, and states that it includes “anyone else, regardless of treatment, with Chronic myelomonocytic leukaemia (CMML), myelofibrosis, Myelodysplastic syndrome (MDS), myeloma, or a chronic B-cell lymphoproliferative disorder such as Chronic lymphocytic leukaemia (CLL), hairy cell leukaemia, follicular lymphoma, Small lymphocytic lymphoma (SLL), marginal zone lymphoma, MALT lymphoma or Waldenström macroglobulinaemia (WM)”.
This government webpage, also talks through eligibility in the context of blood cancer, under Haematological diseases and recipients of haematological stem cell transplant (HSCT) (Box 1).
I know it’s too late now this time round but don’t be afraid to talk this information through with your team so that they’re aware. If you want to talk any of this through with us, just give us a call on 0808 2080 888.
Take care, Alice
On holiday in Suffolk. Tested positive today. Phoned 111. Long checklist from ‘health advisor’ going through a list of questions. Told to wait for callback ‘sometime’.
2 hours later, called 111 again, exactly the same set of questions! Last one, what is the one thing that worries you?!!!
I said all I want is to know how/where I can get antivirals I know I’m entitled to!
Told to wait for callback from local GP out of hours service in Suffolk.
Very helpful GP called back within 15 minutes. She cinfirmed I’m eligible but she needs to find a ‘stash’ (her words) that’s close to where I’m staying - now waiting fir her to call back! The system is not just broken, it’s actually wasting the 111 people’s time - this should not be such a difficult thing to do!!
Oh @beverleyanny I think it must be scary to get Covid when you are away from home on holiday, and the impact it has on your well earned holiday.
Also if you are not feeling well it is sad that you have to go so much stress and hassle.
I hope the GP calls back soon and has found a stash of antivirals.
Look after yourself and please do let us know how you get on
Hi @beverleyanny, how are you feeling? How are you getting on- have you received any call backs from the GP as yet? Please don’t hesitate to call the Support Line if you want to talk things over at all. I do hope that you’ve managed to get hold of someone by now.
Thankyou @Erica and @TanyaBloodCancerUK for your support.
I’m feeling a lot better having taken the second day’s doses of Paxlovid . . . but it was certainly a challenge to get!!
After the helpful call on Thursday evening, I was awoken during the night x3 times by 111 asking if I’d like another ‘assessment’ - I refused.
At 8am on Friday a Nurse called from 111 insisting she had to do another ‘assessment’, could not prescribe, but I would get another call ‘later’!
I was then called by the Suffolk CMDU, who said I shouldn’t have received any calls from 111 as I was now on their ‘list’!
At noon I spoke with another Nurse who was able to prescribe Paxlovid!!
She asked a lot more questions, checked with a local pharmacy and gave me a reference no. and postal address. All looked very promising so my husband set out . . .
The helpful pharmacist greeted him, said he had the prescription, asked a lot more questions which were all answered to his satisfaction then said he still hadn’t received an email permitting him to hand over the box!! He sent my husband to a local cafe, saying it might be a long wait, explaining he had to chase up several different email addresses before receiving permission to let the prescription be collected.
In total, prescribing me with Paxlovid has wasted the valuable time of several 111, CMDU and Pharmacy staff amounting to approx. 4 hours! It also caused more stress and anxiety than necessary, not to mention the lack of sleep!
Surely, for those who are eligible, a sensible route for the anti-viral treatment would be:
- Have you tested positive for Covid: YES (based on LFT)
- Are you eligible for anti-virals: YES (based on NHS guidance lists/letters from Consultant etc.)
- Direct referral to a prescribing clinician (ideally, your own GP or consultant)
In my experience (now on two occasions: at home last year and now on holiday) the CMDU and 111/119 services are broken, wasting valuable resources and not delivering a service anything like ‘fit for purpose’.
I am so sorry to hear that you had such a challenging experience to get your anti-viral treatment, would it be ok to share your experience anonymously with our policy team so we can relay the issues you experienced?
Very glad to hear that you are feeling better since starting the Paxlovid, I hope this continues and do take care.
Oh @beverleyanny I just do not know what to say.
Who would have believed it and there is you suffering with Covid and dealing with the emotional impact and your husband left sitting in a local cafe and you both being woken by 3 phone calls during the night. As for all the questions …
It is a good thing that we have a don’t give up attitude.
Both of you look after yourselves now.
Certainly OK to share! Most people are either too ill, fatigued or just don’t have the will or confidence to complain . . . so they get away with bad service. I feel very strongly that prescribing should be done by GPs and/or hospital consultants . . . it seems so obvious, they know medical history/co-morbidities etc. and can prescribe anything else . . . I cannot understand why they are not permitted to prescribe the anti-virals.
Last year I had exactly the same bad experience with the CMDU ‘responsible’ for prescribing when I was at home in Derbyshire. On that occasion, I made a formal complaint, escalated several times, but despite going as far as an ombudsman, they managed to defend the way they behaved and I was pretty well forced to give up.
This time, they blamed the fact that I was ‘away from home’, but it is a ‘National’ Health service isn’t it, and you can’t always get ill at your home address!??
I had hoped the system had improved, since they’ve had over a year to get it right!!
Sorry for the late night rant!!
Thankyou, BCUK for your continued support.