I was sent the following link. A person has started a petition on Change.org to go to the Health Secretary.
Petition · Protection for clinically vulnerable people in the UK · Change.org
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Hi Lulu999.
Just spoke to someone at Leukaemia Uk re antivirals. It is not a given that we will be given such meds if we test positive. It is left to the clinicians decision. If so does anyone know what that criteria is. Feel people need to be aware of this, believe its giving a false sense of security particularly as Boris is about to stop isolation for Covid infections. Anyone know how to start a petition
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Hi @harrybo123, a warm welcome to this community. You might find our webpage here useful as we are frequently updating it to reflect new developments - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK
During a phone assessment by a Covid Medicine Delivery Unit (CMDU), factors such as diagnosis, medical history, current treatments, and current covid symptoms will all be considered.
As you’ve mentioned, while many people with blood cancer are eligible for a treatment assessment, not everyone who is contacted will be recommended use of new treatments.
In this case, the PANORAMIC trial may be an option. This trial gives you a 1 in 2 chance of getting molnupiravir (half the people on the trial get molnupiravir and half don’t). You can sign up to the PANORAMIC trial yourself if you have covid symptoms, a positive PCR test, and you are aged 50 or over, or 18 to 49 with an underlying condition.
Please do give us a call if you want to talk things through further.
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Hi Harrybo,
There is a petition I put up on the BC UK website recently that I have signed. You might want to sign this. Originally, my husband received it on Facebook. It is run from the Change.org website. Besides Change.org there is also 38 Degrees. Both websites will probably tell you how to start a petition.
Good luck with this and I will sign it. Am fed up being invisible to this government. We are 3.7 million when it comes to vulnerable people, 250,000 of which have Leukaemia. We have been completely forgotten.
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Hi @harrybo123 and a great big welcome to our forum, others have answered your question, but I look forward to hearing more about you.
I think we are a very supportive forum and the Blood Cancer UK website has lots of informative, reliable information on it and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Look after yourself
i think people may be wise to research change.org before paying to add your signature and forwarding them on to other people.
i researched and will not petition through them.
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My husband did not have to pay to Change.org to add his signature to a petition. The organisation will ask you to donate - but this is DEFINITELY optional. From what I know Change.org is a US organisation but Brits use it as well for petitions. 38 Degrees is a British petition organisation.
We have signed many different petitions over the years on very many different subjects, including health matters and we have never been asked to contribute anything for our names to be on a petition.
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Hi @skye a great big welcome to our forum.
I do not know anything about change.org so I cannot comment about paying or not.
I look forward to hearing more about you.
Look after yourself.
Thanks for that, I’ve signed petitions on Change.org before. Signed and sent link to friends.
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Just wanted to clarify on here that this petition is not one being run by Blood Cancer UK.
However, as you may have seen on another thread here, Blood Cancer UK and 17 other charities have produced this brief for the government, which sets out 5 tests the plan must pass to make sure people at highest risk from COVID-19 are well supported to live with COVID-19 now and into the future -
the 5 tests are,
- Directly address the concerns of people at highest risk and commit to improve communication with them
- Smooth, timely access to COVID-19 treatments
- Lateral flow tests remain free
- Improve employment protection and support
- Set out a plan for the use of preventative COVID-19 treatments and prioritise further research into treatments and vaccines
Here’s some more information -
5 tests for the Government’s plan for Living with COVID-19: the support required for people at high-risk | Multiple Sclerosis Society UK (mssociety.org.uk)
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Thankyou to bloodcancer.co.uk for your hard work to help us all .
it helps me to feel supported and not alone with cancer and this covid situation in these scarey times.
Thankyou to all people who post too , i have not posted about my illness i want to but i struggle with that but reading what people are experiencing the same as myself has helped me feel less alone .
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Hi Skye,
We are all pretty much all in the same boat.
I find writing how I feel, the worries I have or just information I need, is so important to me and helps me cope somewhat with my anxieties. It is so hard to deal with blood cancer illnesses, but you will find on the Forum others who will understand your situation as they are in the same position as you are in, be it from living with their illness, being in lockdown and feeling anxious and/or depressed.
So remember, the website is there for you - hang in there.
Lulu999
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Hi @skye and @Lulu999 says it all.
The joy of this forum is that you do not have to do anything you are not comfortable with but we are all here to support each other and we often share similar fears, thoughts, feelings, questions and practicalities.
We are not perfect, my grammar, spelling and punctuation are terrible, thank goodness for spell check I say.
If you feel that you might like to talk to someone I have found everyone so lovely on the Blood Cancer UK support line. There is also so much information on their website.
You are never alone and you are part of our forum family.
Be kind yo yourself and when you feel ready it would be lovely to hear more about you.
Any news on the brief for the government with the 5 tests to make sure people at highest risk from Covid-19 are well supported to live with Covid-19 now and into the future.?
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Hi @Ted369 I will copy your post to @GemmaBloodCancerUK.
Yes, time will tell @ted369
How are you doing?
Look after yourself
Hello there @Ted369, we don’t have any updates as yet but will let you know as soon as we are able. In the meantime if you are able to email your MP that would be hugely helpful: Take action
Take care Gemma
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The more petitions the better,
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Any news on the brief for the government with the 5 tests to make sure people at highest risk from Covid-19 are well supported to live with Covid-19 now and into the future.?
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Hi Erica,
Hope you are coping well.
Well I am between Covid jab 4 and 5, the latter I will be taking in May. Have managed, so far to have three blood tests, seen my ENT Consultant about my sinusitis and have 2 MRI scans (can now add bursitis to my list of complaints). Coming up is a Shinglex vaccine, an eye test, physio appointment, besides Covid jab no. 5. Later in the year will be my Chronic lymphocytic leukaemia (CLL) blood test, second shingles jab, plus no doubt a flu jab and possibly another Covid vax! What an exciting life but at least I am catching up with all the medical appointments I had to put off due to the pandemic.
Beyond that I hope to go out to supper in the high road, eating outside, weather permitting and to a local area to have a coffee, again with outside seating. I also hope to see next month my best friend for a walk. As she drives and I do not, she will be coming to me. I still feel very cautious and using or will be using black cabs with windows open/barrier closed and in my PPF3 mask when travelling, but at least it is a start. Just cannot bear the thought of a third year in lockdown and am too nervous at present to go on public transport.
Hope you are managing ok and keeping safe and well. From one Chronic lymphocytic leukaemia (CLL) Watch and Wait person to another, take care.
Lulu999 x
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