Having received the (Scottish) government advice to shield, but having had treatment over 4 years ago and been drug and symptom free since then, I am a bit confused by the conflicting advice.
I would hope that all the blood cancer charities would be consistent here and I am wondering if the government trawl of records is simply looking for people with a condition and cannot filter out from this those who have been symptom and drug free for well beyond the two years mentioned by lymphoma action. Is this the case?
I appreciate there is a need to protect people, but at the same time there is a significant adverse effect on peoples physical and mental health as well as a strain on the NHS supporting people who might not need it and preferably we should have more of a tailored risk based approach based on individual circumstances. This is especially true for people who are lucky enough to be living in open countryside already and who can walk out their door and don’t need to come into contact with anyone or anything to do this. They could enjoy the benefits of clean fresh air and exercise.
It would be useful if the blood cancer charities could get together and build some sort of more nuanced risk profile so that we not only get consistent advice but we can make more informed personal decisions without overburdening the NHS and without restricting our lives unnecessarily when life has been completely normal for many years.
Hi Edi, a warm welcome to Blood Cancer UK’s Online Community. Thank you very much for your post and sharing our concerns with us. It’s totally understandable that you have questions around this. It’s good to hear that you’re symptom free after your treatment four years ago.
As you have said, the guidelines produced by the NHS indicate people up to 2 years after treatment should be following the guidance around shielding. Although it sounds as though you do not fit into this category having been in remission for 4 years, there may well be other reasons why you have received the letter from the NHS. Developing the criteria to decide who the letters are sent to has been managed centrally, before asking NHS Trusts and local care teams to add to their patient lists based on any further concern about additional risk. Ultimately therefore, it’s members of an individuals healthcare team, such as their GP, CNS or consultant, who are best placed to offer tailored and specific advice for each individual, and that why we are encouraging anyone who has any questions or concerns, to get in touch with a member of their treatment team. This is because they are equipped with the individual details around people’s clinical circumstances and will therefore will be able to offer tailored advice and guidance.
Please be assured Edi that we have been liaising with the NHS to deliver accurate and up to date guidance for our audience, and this is being reviewed consistently. However, this can only ever be general and we’d encourage anyone who is unsure about whether they should be shielding having received a letter to talk to their care team for advice tailored to their individual circumstances.
How are you coping at the moment Edi? We completely understand how difficult the rules and guidance around shielding are for people, and why you’re raising questions around who should be following that guidance, given the potential impact on people’s mental health that you’ve identified.
If you’d like to talk this through with someone from the support line team, or if there is anything we can do to support you at any point, please do feel free to give us a call on 0808 2080 888, or you can contact us by email at support@bloodcancer.org.uk.
Hi Edi, a great big welcome to our community forum, you have certainly joined us at the right time. Yes, confusing, scary unknown times.
You make very valid points and I expect you will read posts from other people sharing their confusing thoughts. Some people have received ‘the letters’ and some haven’t. I think in these unprecedented times some blanket systems work but others don’t. I see @Alice_BloodCancerUK has responded to your post. I have no medical knowledge, but what I have realised is many of us are sharing similar concerns, thoughts and practicalities. How are you doing?
I thInk with even a low grade NHL, I have Waldenstrom’s, it depends If it affects your bone marrow.
I am just coming up to 2 years post treatment, back on ‘watch and wait’ but I do know that my immune system is not going to be as good as someone without WM.
I don’t think I want to take the risk.
Yes I find some of the guidelines particularly going out for exercise a bit confusing.
If after all you can go out when there are not many people are about and you can maintain a distance, I would have thought that getting out for exercise and fresh air can only be good.
I’m lucky enough to have a garden, but you can only go so far.
In fact I did go out yesterday, decided that if I didn’t I would become fearful of doing so.
Lucky enough to have a park nearby, yes there were people in there but easily avoided.
I did feel a but like a criminal at first looking left and right to see if anyone was coming, looking round corners, but the joy of getting out and seeing a different view soon made me feel so good.
I also felt more in control of myself and my situation.
Hi there everyone, just checking in to see how you all are? I hope my colleague Alice’s information was useful. As Alice touched on, our current guidelines around shielding and keeping safe inside is based on NHS guidelines, though of course treating teams are in a really good position to give more specific advice to a individual circumstances. If there is anything anyone would like clarifying and would like to talk through further, do let us know
