Hope you’re all doing okay.
On Monday the government announced that people with blood cancer who have been shielding will have to continue to shield “for some time yet”.
We know this leaves lots of unanswered questions, and we’re going to write to them asking for more details about how people with blood cancer will be supported.
If there’s anything you want to know from them, leave it in the comments below and we’ll try to include as much as possible.
Thanks for further assistance and support!
I guess we need asking for a defining of “for some time yet” - we currently know end of June, does this statement relate to further after that time?
If so, how does it stand for the many of us who were employed and working prior to the 12 week shield - we will continue to benefit from the furlough scheme and will we get some confirmation of that to present to our employers? Or will employers themselves have it confirmed to them direct?
Any long-standing shield will have repercussions for the patients, it already has, what advice can we get to plan a slow coming out of shield to some normal ele,wants of life, for instance could all shield patients have an ID card that allows access to smaller shops (I am thinking the local Tesco Express etc type shop) for early morning shop etc to allow some normality in due course.
I will think of other things I am sure but thanks for the assistance being given.
Thanks for this opportunity, off the cuff:
I am thinking about clarification around families living together where one member is shielding, their employment situation, their families employment situation, should the children go back to school etc.
People shielding who are living on their own needing assistance with day to day care, shopping, getting medication etc…
Care needs that enable people shielding or their families they live with to live in the community.
People shielding and their families needing emotional support.
Domestic violence needs.
Will people shielding and their families need to wear face masks when they eventually come out of shielding
Will the right grade face masks be supplied
What is the status for people shielding and their families and medical appointments
What about people shielding and their families requiring medical transport
What will happen about the backlog of medical appointments either for treatment or to see consultants for haematology/oncology or for other medical conditions.
I will be interested to hear others thoughts.
Hi, good to have the opportunity to ask questions. Mine are based around children going back to school and if that’s safe if I’m shielding? If they are following social distancing would that be ok? Also, could schools refuse to take children of shielding parents because of the risk? Thanks c
Thank you all so much for taking the time to share your questions and concerns, do keep them coming! we are keeping note It’s so helpful for us to know how we can work to best support you all- thank you all for being so open and honest.
I have low grade NHL and finished all treatment over a year ago. Unsure if I would come into the ‘in remission’ or ‘living with blood cancer’ category. I take low dose dapsone and acyclovir daily and feel absolutely fine and well. Now that some things are opening up slightly, I would like some idea of the risk for people in my situation and how it might be managed in ‘the new normal’, so that I can evaluate my own risk.
Hi @Max, a great time for your first time post. I hope you are finding the forum informative and supportive. We seem to be in unknown times and that brings up all these questions like yours. Take care and I look forward to hearing more about you and how you are doing.
Hi. The questions that I would like asked are much the same as those already identified by others. I would appreciate better communication from the Government with those shielding. I have HCL and following two cycles of chemotherapy, am currently in remission, but continue to take anti-virals. In late March (Monday 23 March), I received a text message asking me to shield for a minimum of 12 weeks (until mid June). A letter arrived a few days later, to confirm this, and for a few days in late March and early April I received text message from the Government’s NHS Coronavirus Service offering general advice about diet, exercise, etc. Since then … nothing. The PM did not mention those who are shielding in his address on Sunday (10 May). A few days ago I downloaded and read through the Government’s recovery strategy document, which says that vulnerable people will need to remain shielded until the end of June, possibly beyond. Direct communication and updates (letters and/or messages) would be helpful for those shielding. Not everyone who is shielding will read through the recovery strategy document.
Hello @Mike53 thank you so much for sharing this - what you say is totally understandable. I can only imagine how frustrating it must have been when the shielding community and the issues many within this community are facing, weren’t acknowledged in the PM’s address. Please be assured that we are doing all we can to ensure that key decision makers are made aware of the concerns of this community.
We need CHAT.
An increase in our shielding date was slipped in under the radar and I feel that the Government needs to be open with those of us shielding. An acknowledgement of the type of life we are expected to engage with for an indeterminate length of time would help a lot of us to know that we do not exist in an invisible cupboard whilst the rest of the population is able to pick up threads of their lives.
Apart from those who have succumbed to the virus, and their families, we have given up the most and are mentioned the least.
Hi @Lababe, welcome to our forum and perhaps it has given you that stronger voice to be able to get a message to government. You also show why our forum works as it is here to support each other through these unprecedented times. I look forward to hearing more from you and how are you doing.
@Lababe a warm welcome to the forum. Thank you so much for sharing this. It is totally understandable that you’re feeling this way. It’s so important that we understand the issues faced by the shielding community so that we can best highlight their concerns to the decision makers within the government.
I hope you find this forum a source of support at this time and going forwards, do keep in touch and let us know how you’re getting on.
This hasn’t been widely publicised as this forum is the only place i have heard this. I think I’d like some explanation of why this is apparently indefinite when the rest of the country is coming out of lockdown. I have to be honest. I’m not sure I can go beyond the 12 weeks as I’ve found it a strain.
Hi Franko, yes, this has been my toughest week and I have felt quite tearful. I think it is a combination of things, throughout shielding I am aware my emotions have been heightened and as I hear from friends that are meeting up together, social distancing. Also I really do miss social interaction. I wonder if I were told I could leave the flat tomorrow whether I would be so institutionalised I wouldn’t want to leave. The great thing about this forum is that we are here to support each other for as long as it takes. Hang in there and keep posting because it helps me realise what is going on for me.
Good evening hopefully everyone is safe has anyone received another hospital letter telling you to self shield for a further twelve weeks it was the same letter that was sent out in March obviously the standard letter but dated 20/5
Oh, Ronald, some people are still awaiting or just received their first letter and you have two. I am going on the current shielding date being till the 30 June. We await. How are you coping, we are all here to support each other through this.
Yes it’s the original letters going out again to some people (admin on it all been far from good) but yes all relates to the current shield until end of June whatever date the letter is. But I agree Erica I also have found this last week or so the worse as people generally ease the overall lockdown and happily fone you to tell you all they are doing and meet ups etc etc and no one seems to remember us in the shield go on until June and have no out or people at all the whole way through. And yes it does effect you I find I am very up and down and just grateful for forums and webinars provided by the charities as we all get each other. I had to go for my bloods to be checked this week, usually done every two weeks at hospital - this time not been done for two months and arranged at gp surgery two mins drive from me, didn’t know if I should be excited to go out for the first time in two months or scared stiff ! - bizarre drove there all outside looked “back to normal” get to gp surgery in the “clean” entrance and room for shielding patients (brilliant surgery and so organised) nurse in full PPE me in mask and gloves - we giggled as she did bloods at our outfits - but as she said everyone thinks all is back to normal - and it isn’t - I drove home quick and was glad to get home. Funny days!
Today I would love to have been out and about having the wind blow through my rapidly growing hair, so refreshing but still inside, nearly 10 weeks now. I’m not sure I will feel able to go out if I was allowed to but to have that choice would be amazing. When they talk about summer holidays you feel as if you’re being left behind in this strange world. Others are flouting the rules of release already which could easily compromise our freedoms but since we are rarely mentioned in the briefings how would they acknowledge our existence? This is possibly the worst rollercoaster ride ever.
I agree with you, Lababe, so much! I am already noticing many more people walking past my window and my neighbours seem to be much more relaxed about things and going out a lot more. I am very concerned that other people’s irresponsible behaviour is going to put us ‘Shielders’ at greater risk and cause an increase in Coronavirus cases again. It is very unfair when we are trying to stick to the rules and other people don’t seem to care. It does sometimes feel like we have been forgotten! Take care everyone. Willow