@2DB
It sounds like yours were all in the same clinical commissioning group
… and the other thing is, lots of things to do with covid seem to rely on a mobile phone number which I don’t have… you can’t even log the +ve test without a mobile number, even doing it on a laptop, they won’t log it without a mobile number to text.
the call to 119 to log the +ve result was over an hour, mostly on hold, because they are busy…yes well, I’m ill
and over and over they tell me I can log the +ve test online - I CANT, stop telling me lies!!!
@KBull
My future route is make sure I get a name and number, and dept., from whoever calls me, and ask for an escalation number
I won’t even bother to wait for 119, I will phone 111 straight away after logging the result
ask them who they will refer me to, and see if I can push for Devon straight away.
There are more holes in this than a sieve
My next consultant appointment is 10th May - I have a lot of things on my list for them
I dont like this reliance on mobile phones but I guess its because they can cut admin costs. My CCG stopped all post consultation letters, instead I rely on an electronic portal and sometimes its 6 weeks after the consultation before it appears. Also the portal is supposed to contain all my results and documents except it doesnt. As well as myeloma I have prostate cancer and none of my regular PSA’s are logged so I have to ask my GP for these.
I wish you all the best with your consultant. Face to face has only just restarted for me (although I now find it could have been offered much ealier).
I have found it challenging to bring up my issues over the phone, but even in person my consultant has chosen to distance from giving any advice or involvement regarding covid. This has been very hard to understand.
Speaking to my CMDU didnt inspire any confidence in the system re antivirals - they could only recommend the same route in future which I had already found problematic. I guess I will only find out if I have to repeat it.
I think I am going to have to accept the staus quo and move on.
All the very best
Been a big fan since my first concert at Sheffield Arena in 1992. Packed stadium and lots of blow up guitars never forget it. Last time I saw Francis Rossi was a stage interview just after Rick Parfitt passed - he spoke very movingly.
Your comment just cheered me up to remember.
Thanks for your support which is a great help and does make a huge difference.
@KBull Many years ago my best friend saw Status Quo live at a works ‘do’ in Milton Keynes in the afternoon and then they were helicoptered to Petworth House, National Trust property, in West Sussex for an open air, evening concert, I just could not stop singing and dancing along and then the music was in my head for days.
I bet you are singing along now, I am, diversion tactics work for me every time !!!
I saw status quo at Knebworth. They were the supporting act for Queen along with Big Country. A fantastic night to remember. The last time Queen played together in concert.
Wow, @ilivesunshine what a night to remember that must have been.
We also saw a lot of great tribute acts in the summer at outside concerts which were wonderful as we were sitting on the grass with our picnics in the late afternoon and into the evening when it got dark. Then the concerts ended with a firework display
My consultant said ring the cancer help line at the hospital… They are open 24/7 unlike gps and my gp receptionists are dead nuts against giving anyone access to GPs full stop… Certainly not on the same day sadly
Does anyone know when travelling to the EU or US, whether it’s possible to get travel insurance which would cover access to nMABs if you contract Covid whilst there? Given Covid is not generally insured under most policies I anticipate not.
I am in Spain for 6 weeks at the moment. I must admit I never thought about access to anti virals being covered by my travel insurance. However I went to see a GP here when I arrived, and asked him if I could get them if I were to contract Covid. He said there were no special arrangements here, and that I should do what everybody else does, and stay at home unless I am very unwell, in which case I should go to the hospital.
Hi @Paul, a good question. Guidance and processes around accessing these treatments abroad after a positive test is something we’re currently trying to clarify. Hopefully we will learn more soon and if we do, we will update the blood cancer community. Apologies we can’t help with this more on this occasion!
I tested positive on Sunday after shielding since mid 2020. Reported my lateral flow test online to NHS and to cut a long story short a GP at my surgery referred me to the CMDU after I tried the 111 service who turned out to be useless and cost me a day before getting the antivirals yesterday.
However my point in this message is that the doctor at the CMDU said that they didn’t normally give to lymphoma patients. As soon as I said after 3 Pfizer doses I had zero antibodies and after 4th dose positive but only 144 U/mL he said this made him change his mind. So good idea to get antibodies tested say 2 weeks or so after the vaccine. If your antibody results are good you will feel protected and if zero or low to be more careful and helpful information to supply in order obtain antivirals if you catch Covid. I use monitormyhealth.org.uk which is run by NHS and are the cheapest! Best of luck to everyone.
Hi @Addax sorry to hear you’ve tested positive and that you had such a challenging conversation during your assessment with the CMDU, though it’s good to hear you received antivirals yesterday. How are you feeling?
@Addax would you mind letting us know (via email or direct message to protect your confidentiality) which CMDU you spoke to, so that we could escalate this to the NHS? There’s no pressure to send us this information at all. As you may know, during a phone assessment with a Covid Medicine Delivery Unit (CMDU), factors such as diagnosis, medical history, current treatments, and current covid symptoms will all be considered. If someone has lymphoma and they have covid symptoms, then there should be a discussion around any other medication they are taking and which covid treatment might be most appropriate.
The result of an individual patient’s antibody test is not an eligiblity criteria for accessing the treatments, and it is concerning that the clinician used it in this manner, instead of referring to the NHS eligibility criteria list. Thank you for sharing the company you have found helpful in terms of accessing an antibody test, although we must state to the wider forum that this company has not been verified by nor is it endorsed by Blood Cancer UK.
Our article here explains more about what antibody test results might mean for blood cancer patients and why it’s difficult for our community to use the results from an antibody test to provide certainty about whether they are protected or not. We have another article on this too, which talks about what antibody test results mean, what the evidence suggests is important in developing a response to vaccination and what other factors are important to think about. You can find it here: What do Covid antibody tests mean for people with blood cancer?.