Oh @Addax it seems so unfair to have been shielding for so long that you test positive for Covid.
Look after yourself and I hope you recover soon.
Please keep letting us know how you are
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Thanks for your response. My only reason to message the forum was I thought it might help others. My call with CMDU wasn’t what I would call challenging. First he asked cancer details and when I said diffuse large B cell lymphoma his response was they didn’t normally give antivirals for lymphoma. I’m not aware exactly what info the GP sent, whether GP informed clinician my last chemo was Dec 2020. I’ve looked at the links you attached and it appears that chemo treatment has to be within last 12 months. As I live in Brighton and Hove I imagine the CMDU is Brighton. With regard to vaccine antibody tests these are the only public tests available that at least provide some indication of vaccine efficacy. I prefer to have some idea rather than none!
monitormyhealth.org.uk is a not for profit venture launched by the Royal Devon and Exeter NHS well before the pandemic. Worth a look if you have time. I also took part in the National Cancer vaccine antibody test which returned the same negative result after my 3rd Pfizer jab.
I will let you know how I get on, too early right now. I was prescribed molnupiravir.
Regards
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Please sign this
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Signed and shared widely
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Can someone please explain the purpose of the CMDU and it’s role in gaining access to treatments should we be misfortunate enough to contract COVID. I understand a telephone interview seems to be the key to getting treatment . Surely not. Alice has referred to Interim clinical commissioning policy, surely that pre determines eligibility and if that is the case the list of who and who is not eligible should come from our own Consultants. Who are these people anyway they appear an unneccery cog in a complex Lotary wheel?
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Hi @Paul just to let you know we’ve added a new section to our webpage here called ‘What if I want to Travel or go on holiday?’ which we will review and update as we learn more.
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Thanks Alice, I will have a look.
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Hi @MCA,
It’s totally understandable you have these questions. We know that for some people, it hasn’t been simple to access these treatments when they’ve needed them. It’s important to remember however, that for many people, the process of accessing treatment after testing positive has run smoothly.
It’s also important to remember that not everyone eligible for Covid treatments will need them, so there does need to be an assessment and a decision around whether or not to prescribe a treatment, for each person, just like with any other medical prescription.
A CDMU assesses people’s eligibility and need for antiviral or antibody treatments, but the CDMU will also be responsible for organising the logistics around the individual accessing the prescribed treatment. It’s important to note that although CMDUs are a separate channel, individual’s clinical teams can give the CMDU their clinical advice around their patient’s eligibility for Covid treatments.
You may want to watch this video as it discusses generally what a CMDU assessment looks like and what it includes - Access to new Covid treatments for people with blood cancer - YouTube.
I do hope this has somewhat helped and please do know that our support service team are always just a call or email away should you ever wish to talk anything through also - Blood cancer information and support by phone and email | Blood Cancer UK.
Best Wishes, Lauran
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@LaurasB,
Thanks for your response, you say part of the role is to assess eligibility, my point is why. Requirement for actual treatment another matter. Also why do they not have access to our medical records.You say clinicians can have input but surely only if they make referral to them. 111 won’t be able to do that or my GP. It still appears rather poor way to offer the treatment so much is reliant on the patient regarding timing and assessing their own symptoms. Do you have any information on the success of such interventions in saving peoples lives in terms of people who specifically have contracted covid and have blood cancer. Similarly how many have died after treatment or as a result of not getting it. After all the Government are asking us to assess our chances based solely upon access to such treatments. As they seem to be reluctant to give us Evusheld.
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The CMDU system is broken,
You phone 119 to log a +ve test, they say someone will call you in 24 hours, they don’t
you phone 111, they say someone from CMDU will call in 24 hours, you tell them it has to be Devon, because, although you live in Cornwall, you are treated by Derriford hospital, in Devon
someone from cornwall CMDU unit calls, and can’t access your records, no s**t sherlock, I already know that,
and they don’t have either essential thrombocytheamia, or hydroxycarbamide on their list, but as a “favour” they will pass me on to devon, and you’ll get a call in 24 hours
no-one calls
you phone up birch ward, as your backup
no-one calls
eventually, you get Devon cmdu - but they have to pass you to a consultant - who will call you back in 24 hours
which they do
your get your antiviral tablets 84 hours after the initial call, but they wanted to give me an infusion, and it would have to be another 48 hours for an appointment for that
The system is broken
and all when you can hardly breath, and speaking on the phone is horrendous, and your temp is over 37c
Dear @heatherthomas, I am so sorry to hear that you have had such a difficult time in accessing your COVID treatment. Can I just check that you have started the anti-viral tablets and that someone is checking in with you from the CMDU?
I will of course pass your experience on so that we can feed this back as it is full of issues that you shouldn’t have had to deal with.
If you symptoms do get worse please do contact 111 or your Haematology out of hours team.
Take care and so message back with an update.
Kind regards
Gemma
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I found this article today which I am sure people will find of interest in the debate about use of current treatment and in relation to funding evusheld
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Hi Gemma,
it is all sorted now, but it was a nightmare at he time
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I am glad you are sorted now @heatherthomas, how are you feeling today? Do you want me to take your example forward for when we speak to the NHS about the CMDU and treatment issues? If you do I may need a couple more details so just let me know. Take care Gemma
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Yes, you can take it forwards
I am not sure, if my records are right, or if there is a disconnect between CCG’s, or I don’t have a mobile phone,
but nothing ever seems to work for me.
I was never invited for any of the jabs, I had to blag my way for the third jab
nothing happened automatically from 119
and I don’t have the free pack of LTF
something isn’t right.
my consultant says things should work, my doctor says so too, but they just don’t
I haven’t been invited for the 5th jab either, and that was due by now - but as I have had covid, I’m not pushing that yet
Thanks @heatherthomas, if you could privately message me on the Forum or email support@bloodcancer.org.uk the following:
Full Name
Date of Birth
NHS number
GP name and address
Your address
Many thanks and we will keep in touch.
Gemma
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Thanks for your response, you say part of the role is to assess eligibility, my point is why. Requirement for actual treatment another matter. Also why do they not have access to our medical records.You say clinicians can have input but surely only if they make referral to them.111 won’t be able to do that or my GP. At the weekend what happens ?It still appears rather poor way to offer the treatment so much is reliant on the patient regarding timing and assessing their own symptoms. If these CMDU centres are local why can you not access them 24 hours a day directly by telephone or even on site. When you are Ill and potentially have a life threatening situation which requires prompt action. The referral and third party triage system seem inappropriate and probably broken. The role out of boosters for us was a similar shambles. Do you have any information on the success of such interventions in saving peoples lives in terms of people who specifically have contracted covid and have blood cancer. Similarly how many have died after treatment or as a result of not getting it. After all the Government are asking us to assess our chances based solely upon access to such treatments. As they seem to be reluctant to give us Evusheld.
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So sorry to hear what you have been through The whole fiasco is ridiculous. Can i just say i didnt wait yo be invited for my 5th jab. I booked it on the NHS app 3 months after my fourth. Surprisingly it all went smoothly
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