P S - Details of the Scottish scheme including downloadable posters are available here -
Coronavirus (COVID-19): distance aware scheme - gov.scot (www.gov.scot)
1 Like
12 days since I got Covid and I was testing positive even on day 10. I did not have any side effects from the Sovtravamib. Despite all four jabs I did feel pretty rotten. I suddenly felt more like myself on day 10 but a slight nagging headache and chest pain which I feel in my back continues. I do feel that the infusion did help and probably saved me from more breathing difficulties. I will be taking it a bit steady for a while until my headache and chest pain has fully resolved. I thank you for the best wishes and hope that you all keep well and if visited by the Covid fairy are more like the other blood cancer folk in the hospital and have mild symptoms. Do send your priority Pcr off as soon as you are able. Mine was posted on a Saturday and I feared I would not have it dealt with until the Monday at the earliest and I was wrong . It was processed at the weekend and I was called to organise the infusion early on the Monday. God bless blood cancer uk, the NHS and the Scientists. Keep safe everyone.
9 Likes
Glad you’re recovering @GrandmaJo. Take care
4 Likes
Oh, I’ve not heard about those! Thank you for mentioning these 'BE DISTANCE AWARE" badges, @UncleRoy. I’ll have a look on the Government website.
I’ve been idly wondering about getting a sweatshirt printed - or a mask maybe? - and now I think I will have a good search to see what is already out there.
As you suggest @Grannajan there’s no point if the badges are tiny and people come closer to read them! I think I’d like a sweatshirt with a distancing symbol on the front and back that is really clear to read from 2+ metres away. I’m now inspired to check the @BCUK website to see if they are a step ahead.
3 Likes
I’m so sorry my husband was in exactly the same position. He rang the local surgery and fortunately our most efficient GP listened and said he would look into it for him. Two weeks later success. It is a battle which causes unnecessary worry. We had rung twice previously before receiving any advice or help.
3 Likes
Well,@110279 it sounds as if try, try and try again is far too often needed by us.
Look after yourselves
Sorry, the post is a bit long, but hopefully my experience may help others. I have WM (Waldenstrom Macroglobulinemia), a rare form of non-Hodgkin lymphoma and in the ‘high risk’ group, being immunosuppressed despite not receiving treatment. I’m on ‘active monitoring’ or ‘watch and wait’! Not being ‘on active treatment’ seems to be the issue with the CMDU who contacted me . . .
For me, it was also great to know that from Februay 10, referral for antibody/antiviral treatment could be following a positive LFT. https://bloodcancer.org.uk/…/covid-antibody-treatment/
Tuesday 8th, I tested positive for Covid. Did a LFT, and registered it online as I’d sent off my ‘pre-registered’ PCR test on Monday and got a ‘VOID’ text message back on Tuesday! Had classic Covid symptoms and getting worried about delays in referral, so feeling quite anxious.
Sadly, contact with my local CMDU was less than satisfactory. The person doing the ‘assessment’ (a nurse) was quite unsympathetic and said I didn’t meet the criteria for treatment. She said I’m not eligible because I’m not on chemo. or immunosuppressant drugs. She didn’t seem interested in what my actual condition was and why I was unhappy with this decision. She also said she didn’t have access to my medical records and therefore couldn’t help any further without blood test results! Asking what I could do, she suggested I phone my consultant!
So, I called my clinical nursing team, who are always wonderful. They checked out my details, chatted about the pros and cons of antiviral treatments and advised they think everyone should be referred. They also contacted the CMDU on my behalf to request another callback (apparently, hospital consultants are not allowed to prescribe, only the CMDU - GPs are also explicitly out of the loop).
After another fairly difficult callback conversation (with a different CMDU person who was clearly following the same set of standard questions), I was told to wait for yet another call back. By this time, it was mid-afternoon and I was totally drained! I just seemed to be getting nowhere . . .
Another half hour and the CMDU person called me back and said she’d get a prescription sorted . . . just like that!! I asked what had made them change their mind and she said her supervisor had said I was eligible . . . an NHS taxi arrived from a local hospital pharmacy with a box of Paxlovid antivirals early evening!
Not sure what to make of this experience, but thought I’d share for others to take note. Suggest, if you can, do persevere, contact your hospital team and try to get a second call from the CMDU if you’re rejected first time.
I’ve done more research today and the UK has purchased 2.75 million treatment packs (not doses) of Paxlovid - so there should be plenty to go around!! So far, symptoms aren’t getting any worse . . . fingers crossed.
4 Likes
Hello! Well done for your perseverance! Sadly, it’s the way everything seems to be set up - lots of ‘missives’ with kind words and promises from Government departments and then we’re the people to ensure each separate ‘bit’ of the system knows what to do/how to do it: Hospital dept., GP, 111, 119, CMDU etc.! This forum is invaluable for sharing experiences, and cutting through the maze - thankyou.
3 Likes
Oh @beverleyanny just when you have the shock of having tested positive for Covid and probably not feeling well at all.
Also your blood cancer (if you are anything like me) probably meaning you do not deal with or have the energy for stressful situations without getting fatigued.
I really admire your perseverance, I think you did absolutely brilliantly.
Please do let us know how you are when you feel better.
Be kind to yourself and look after yourself
2 Likes
@beverleyanny I had a phone appointment with my Consultant yesterday. I have Follicular Lymphoma and like you am on watch and wait without having had Chemo. I specifically asked him if I was eligible for anti viral treatment via CMDUs and he confirmed that I was. I felt reassured. After the fight for the 3rd and 4th jabs I should have known better. BCUK is there anything you can do to help this situation? Is there anything I can be armed with so that I have answers ready for this kind of block incase of need?
3 Likes
Hi @Bronte I will copy your post to @BloodCancerUK-SupportTeam for you
Look after yourself
3 Likes
@Erica Thank you for doing that Erica….you look after yourself too.
1 Like
Dear @Bronte, please do have a look at our webpages on COVID treatments Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK and in particular watch the video with Professor Claire Harrison who explains the process if you were to become COVID positive. Please bear in mind that you can register a positive lateral flow test online or by calling 119 and we recommend calling your Haematology Team (GP and 111 can also refer) to contact the CMDU for your assessment. I do hope this helps and take care. Gemma
2 Likes
The fundamental problem is that the CMDU is an entirely separate ‘channel’, who don’t have access to your medical records. They seem to go through some kind of ‘checklist’ and, on the basis of this, can decide ‘yes or no’ despite what your clinician and/or GP may think!! It really felt like an ‘admin.’ set of checks rather than ‘clinical need’. All the prescribing, as I understand it, has been outsourced to these services - our local one is the company that also runs the 111 and 119 call centre services.
I’ve found the info. from MHRA and there are three links to regularly updated PDFs with a flowchart and various lists that seem to be the basis of the ‘checklist’. When I asked why I didn’t meet the criteria during my first conversation with the CMDU, she said it was ‘because you’re not ill enough and aren’t on chemo’. This is incorrect! Once again, we need all the information in order to challenge the administrators, rather than let the clinicians prescribe . . . scroll right down to the bottom for three links in tiny font size: CAS-ViewAlert
Hope this helps - I’m feeling much better, on the last day of Paxlovid (the antivirals available in tablet form - five day course of treatment: the UK has 2.75 million treatments ordered, ref. Pfizer website).
4 Likes
Hi @beverleyanny so glad that you are starting to feel better.
Please keep posting how you are and be kind to yourself
2 Likes
Really glad you are feeling better @beverleyanny….thank goodness you were able to access the antivirals. Thank you so much for the link you put up. This is the kind of information @GemmaBloodCancerUK I was asking BCUK to put up. I have been through all the guidance Gemma, that you suggested and what with that and my Consultants’ reassurance I was feeling ok. @beverleyanny really brought me up short and made me realise I could be fighting a job’s worth when very poorly. Armed with the information provided by @beverleyanny I am now in a position to quote ‘chapter and verse’ if the need arises. I have saved the MHSR document to my homepage and can now access the guidance easily and quickly and the PDF will update when something new happens. I would urge people who need this information to do this. Once again, thank you @beverleyanny for the link and thank you @GemmaBloodCancerUK for your advice.
5 Likes
Following up from @UncleRoy’s post a while back, which inspired me to look for some ‘Distance Aware’ badges, I came across the BCUK version ‘Please stand back I’m shielding’ and eventually decided to order a couple. They’ve arrived today 
The print is a really good size (you don’t have to come up close to peer at them 
) and I like the way they explain the reason for shielding at the same time.
Now to see what happens when my OH and I go out wearing them. I’ll try and upload a photo to show the size of the badge relative to a jumper, but if I don’t succeed, please take my word for it! I kind of hoped we wouldn’t still need this kind of thing but the Covid numbers are rising fast in our area and no doubt the numbers are even higher than the data shows with the reduction in testing.
So glad to read that you are feeling better @beverleyanny and thank you for sharing the information about Paxlovoid. It’s reassuring to know this treatment is out there and that since taking it you are feeling much better. Stay safe everyone.
PS I didn’t have any luck uploading the photo so here’s the link instead:
4 Likes
A brilliant badge @Coastgirl aren’t they. Thanks for putting them on here
2 Likes
Hi there again. I’ve been hearing about several other people who are having the problem I had in accessing anti-viral/nMabs through poor CMDU services. This is in a much smaller, specialist forum of people with Lymphoma. Coincidentally, also heard of a person who lives locally to me . . . does anyone know who the CMDU contractors are responsible to for delivering this service? Looks like it’s been contracted out - so who ensures they are doing the job properly???
3 Likes
Hi @beverleyanny I am sorry you are still having such problems, I had hoped you were sorted now.
Look after yourself
1 Like