My husband is still waiting for his letter, but I’ve read about several Chronic lymphocytic leukaemia (CLL) patients on the Health Unlocked website who’ve managed to get the treatment. They’ve had to jump through a number of hoops and be very proactive, but they did get the treatments.
2 Likes
Thanks @Ruth that is very interesting.
Perhaps I shall try the pleasantly assertive approach, if that fails I shall try bursting into tears. I usually feel like that when stressed and fatigued.
4 Likes
Hi @KBull , it is really frustrating for you that you have been treated like. I hope that you haven’t been seriously ill with Covid and hope you are feeling better soon.
2 Likes
I’ve told my husband that, in the unfortunate event he ever tests positive, I won’t sit and wait 24hrs to be contacted. That could be 24hrs wasted, and so many people are still waiting to get these letters I just don’t have confidence a positive result would be picked up!
4 Likes
Gosh that sounds frustrating for you @KBull, I do hope you’re doing okay?
We’d encourage you to contact 111 to explain your situation as they should be able to assist, and we’d also encourage you to contact your haematology team to inform them that you haven’t been contacted by a CMDU yet, and ask if they can assist with the process of accessing these treatments.
If helpful in your conversations, here is the letter sent to healthcare professionals instructing them about this process in England.
Please don’t hesitate to give our support line a call if you want to talk anything through. Our number is 0808 2080 888.
All the best to you, Alice
1 Like
Not too bad thanks. I am on day 10 and still positive. Symptoms of a light cold. Maybe the stress of being ultra careful for so long didnt help. What has been most disappointing is the constant encouragement to “get out and do more” from friends, neighbours, family and even professionals who have very little understanding of the risks that would entail for me.
2 Likes
Thanks for your support. Symptoms quite mild like a light cold, am on day 10 still positive so maybe a way to go yet.
1 Like
Thanks for your advice. I did ask my GP if haematology needed informing and they said not neccesssary. At Day 10 I have still not been contacted by a CMDU so for me I think its all too late.
Fortunately my symptoms have been quite mild. I think unfortunately like the 3rd vaccine letter the notifications are getting overlooked but this seems to be feature of the system for me.
1 Like
It’s alarming you weren’t flagged as vulnerable and treated as you should have been within the fairly short time period required with antivirals or nMABs and 10 days later still nothing. I hope you recover quickly.
With cases of omicron increasing so rapidly and today’s government announcement that certain key workers will be prioritised for testing, there is an increasing danger that other vulnerable people requiring treatment with antivirals or nMABs will be missed, or their results not known within the time period required for them to be treated.
Does Blood Cancer UK have any information whether those categorised as highly vulnerable and eligible for treatment will have their PCR tests prioritised to ensure they are treated within the requisite time?
3 Likes
Unfortunately so many people have little understanding and it hurts, we understand on here.
Look after yourself
On the subject of people not receiving letters, there still seem to be a lit of people (on other sites) who have still heard nothing. One resourceful lady got in touch with NHS Direct who informed her that patients are being identified for letters on the basis of the SNOMED codes that are on their medical records. If these are wrong apparently only GP or Specialist can amend. So my husband (well me, because I’m the letter writer 
) will be emailing the practice manager and Haematologist tomorrow and requesting that they check this. I just wondered if BCUK were aware of this, because a lot of people seem to be affected!
4 Likes
Hi @Ruth I will copy this to Blood Cancer UK for you @Alice_BloodCancerUK .
Thanks, look after yourselves
2 Likes
Sorry to hear you’ve tested positive, but glad you’re not feeling too poorly. There was quite a long item about this on BBC Radio4 News at 5pm, including interview with a woman having treatment. It seems the rollout of this is being done by yet another ‘Task Force’ with contractors managing it in different parts of the country (according to the interviewee on Radio 4). Can’t find any references to it, or how it’s being managed, anywhere online, but here’s the link to the 5pm News on BBC Sounds. PM - 05/01/2022 - BBC Sounds
3 Likes
Hi there, Annie78. Since my post earlier this evening, done some more trawling around and found this official NHS updated list which includes Chronic lymphocytic leukaemia (CLL) - thought it might be useful for you www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/12/C1530_Interim-clinical-commissioning-policy-neutralising-monoclonal-antibodies-or-antivirals-for-non-hospitali.pdf
2 Likes
The link doesn’t seem to be working. I am I interested to know if I will be able to have the treatment should I catch covid. I have ET. 2 of my friends currently have covid and a lot of people who my husband plays golf with also have it. I haven’t been in contact with any of them recently as we have been to Spain for new year and still awaiting our day 2 test results do can’t go out. I havent had a letter or email. I have checked my spam.
1 Like
Considering the accepted unreliability of PCR test kit supplies, surely the time has come for Monoclonal antibody tablet courses to be made immediately available to immunosuppressed patients on their receiving a positive Lateral Flow Test result
4 Likes
Thanks for the link; just listened to the programme. Perhaps BBC News should follow up with a story about the disgraceful situation of vulnerable people NOT receiving these letters and going round in circles trying to get somebody to do something. Just like the third vaccines …… this was announced with a big fanfare, but then falls flat and nobody seems to care!
5 Likes
Thanks for this. It appears my GP contacted the group responsible in my area by letter. I have been put on a waiting list to be contacted by phone. I am not holding my breath. Obviously this treatment has not been given any priority.
3 Likes
I totally agree Ruth. It’s been a fiasco. I made a formal complaint against a consultant at my local hospital who refused to give me a third primary vaccine. By the time I sorted it out, it was too soon before my stem cell transplant to be vaccinated. I’m now concerned the same lack of understanding/organisation and slow testing/prioritisation of PCR testing for the immunosuppressed could well lead to me and others becoming seriously ill or dying because of this issue.
Vicky Foxcroft MP has previously asked parliamentary questions about the third vaccine problems: Letter to the Health Secretary – Support for Immunocompromised People - Vicky Foxcroft
I’m going to write to her about this as it needs to be given proper awareness.
4 Likes