@beverleyanny….Clearly you have got past this issue this time and I think that what you are raising is the problems other people are having who should be getting the antivirals. Without knowing the name of the contractor or who is monitoring them to do their job properly other people might be left without the severe illness/ lifesaving treatment they need. Could BCUK help us to find this information so that when things go wrong, and they do, we know who enquiries should be addressed to. If necessary there should be a clear complaints pathway as well.
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@Coastgirl I wear this badge all the time and it really does help people to step back and give you space. I really don’t believe that anyone deliberately gets too close. It’s just thoughtlessness and the manufactured belief that Covid is over. It’s a gentle reminder that some people are still vulnerable which is really helpful and the vast majority of people respond to it with kindness and consideration.
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Hi @Bronte I will copy your post to @BloodCancerUK-SupportTeam for you, look after yourself
Hi @beverleyanny, you’re right in that the CMDU is a separate channel, but it’s important to note that a person’s treating team can give the CMDU their clinical advice around their patient’s eligibility for Covid treatments. So it’s really important people keep their haematology team updated with what’s going on (something which people may want to ensure they are equipped with, is their haematology team’s out of hours contact details).
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As soon as I saw there were difficulties fot Chronic lymphocytic leukaemia (CLL) patients accessing antibody treatment I got the phone number for the local CMDU and rang them… It was an answering machine but a doctor rang me back and reassured me I would get treatment if I became positive… I have had antiCD 20s (obinutumazab) in the last 12 months and Venetoclax which I understand enfeebles T cells.also an nhs antibody test after 3rd jab which was negative… I’ve since had 4th jab but I have no idea if I now have some antibodies but I’m not counting on it… I really hope evashield (spelling wrong sorry) is made available soon even if it is less effective against omicron
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Thanks for the message, Alice. The problem is that I was told CMDU does not have access to my medical records, and when I informed her about details of my condition, and that my medical team advised I should have the treatments, she didn’t understand and still assured me I wasn’t eligible. As a patient, I should not have to ‘fight’ for NHS treatment. I persevered with the ridiculous ‘to and fro’ wasting time of my medical team to eventually get the prescription. The CMDU staff need adequate training, access to medical records, an understanding of the type of people who may be calling (ie anxious that there’s a timeframe for them to be given the medication) and ability to have a supportive and helpful telephone consultation. Many people will just give up if they’re fobbed off by the call centre staff, and could suffer the consequences of not receiving appropriate treatment. Once again, the system is letting us all down.
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Hi there, Annie. Evusheld has been approved by MHRA today. No information about how it will be made available, by whom or for whom . . .
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Thanks, Erica. Feeling much better now after having the full five-day course of Paxlovid - had a bit of a ‘relapse’ a couple of days ago, which the nursing team had advised me to be ready for, so I took it easy. Today, encouraged by my husband, went to my ballet class (did it via Zoom last week in my kitchen), expecting to have to have a rest, but did the full two hour session and it really felt great!! Good luck, everyone!!
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Wow, @beverleyanny I am so impressed with you actually going to a full 2 hr ballet class, that is a ‘feet’ Ha, ha.
A great test of your energy and stamina and even better it felt really good.
Look after yourself.
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I can recommend the ballet I go to - it’s called ‘Silver Swans’, set up by the Royal Ballet a few years ago. I started in 2016 after a slipped disc resulted in me having ‘drop foot’ (nerve condition making one leg completely dysfunctional!) I now have full movement back in that leg (mix of determination, physio and, I’m sure, the ballet). It’s aimed at ‘seniors’ and is a brilliant way to keep fit and active in a gentle, supportive and sociable group. Here’s a link to the website with list of classes around the country: https://www.royalacademyofdance.org/dance-with-us/silverswans/
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You’ve got far more energy than me @beverleyanny . My knees are useless these days. Glad you’re doing better.
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Thanks @beverleyanny the ballet you do sounds great.
Having fought quite hard to get on the entitlement list for nMABs antivirals (Thanks Chronic lymphocytic leukaemia (CLL) Support and Blood cancer UK for their help) Its interesting to report what actually happened when I eventually got Covid and needed to use the system.
I was knowingly taking a risk going to a big social event but then I’ve had 4 jabs, have been on W & W for years and now had the antiviral safety net.
I started to get symptoms, tested positive by LF on day 2, took the dedicated PCR on the same day which was reported positive the following day. Within 4 hours of reporting the LF I had a txt confirming I was eligible for special treatment and would be contacted within 24 hours. Good, I thought!
I waited all the next day - no phone call. Mindful of the 5 day limit (turns out to be 7 days for some treatments) I contacted my GP on Day 4 who referred me to the CMDU. Was then contacted by CMDU later that day, triaged over the phone and judged eligible for nMAB infusion as antivirals were contraindicated due to another condition. Symptoms of Covid just a bad cold.
Was telephoned later that day by an infusion provider but in another County over 2 hours drive away. My wife couldn’t drive me - also Covid vulnerable - so I asked to be referred to a centre in my own County. Eventually on Day 6 I was telephoned by an unknown number but missed the call on my mobile while in the garden. I dashed inside to hear the landline ringing but just missed picking up in time. I think this was the local infusion centre. They never rang back - I could have been in the loo!
So, in short, I never got the treatment due to delays in the process and admittedly my foolishness at not sitting right by the phone all day every day(!) Having said that, thankfully my symptoms have been mild even though 10 days later I’m still testing positive.
Encouragingly, the CMDU have responded to my emails and I have sent them a timeline as a learning experience to help improve the process for others.
My final comment on the process is that I’m surprised the clinician undertaking the triage doesn’t have access to the Patients health record. The triage is complex with things like eGFR rates for Chronic Kidney disease coming into play. The need for speed in setting up the system is understandable thus lack of access to health records perhaps understandable - but it does make the triage a bit hit and miss.
Sorry its a long story but my advice is to be ready to intervene on your own behalf and speed the process up given that its time critical. Have the email address of your local CMDU to hand - it helped me even though ultimately the system failed.
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Blimey, @Snellybob, you’ve certainly had a time of it - but so glad to hear you’ve felt ok. Thanks for outlining everything that’s happened to you - it’s extremely useful. Hope you test negative soon.
All the best.
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Oh @Snellybob what an experience and at a time when you might feel very poorly with Covid symptoms, anxious, scared and not have the energy to be chasing agencies and fighting your corner. Look after yourself
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Wow , I feel quite fortunate to have been in hospital when I tested positive. At least I got the treat quickly
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@Summertime you always look on the positive side, but so true.
Be ever so kind to yourself.
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So sorry to read about your experience @Snellybob and hope that you will be feeling completely better and testing negative very soon. It seems so unfair that you shielded and shielded and after all that time took just one risk for an important event and caught it.
What a relief that it wasn’t too severe but it makes very bleak reading that the system for getting treatment is so haphazard. I am starting to wonder if I’m being too cautious still and now, after reading this, maybe not. Wishing you all the best with your recovery.
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I think that is the worry @Snellybob that the system is imperfect and doesn’t do what it’s meant to do. Glad it was only a mild dose and you got over it.
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Thanks everybody for your thoughtful comments. Finally tested negative today - 12 days on. Immune system obviously a bit compromised but fundamentally OK. All’s well that ends well!
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