Feedback and thoughts please

This topic contains 7 replies, has 8 voices, and was last updated by  marty2019 1 year, 10 months ago.

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  • #141253

    ellen
    Moderator

    Myeloma UK has been approached by a service user regarding their worries about a change to the shielding guidance. They made a suggestion which we would like to ask you to think about and provide us with your opinions and feedback. So, we want to understand how myeloma patients and their families as well as those affected by related conditions would feel about wearing an accessory or some other item to distinguish themselves as extremely clinically vulnerable when they are outside their home; to act as a reminder to others to behave responsibly and participate in social distancing. The patient and family member who contacted us feel anxious and worried about leaving their home, without being able to let other people know of their circumstance.
    Items or accessories that include badges, brightly coloured face masks, lanyards or some other item may be an option, but not the only option. We at Myeloma UK of course want to help and support people in any way we can – we always stand alongside you. We need to understand if something like this would indeed make a positive difference to your lives.
    Please bear in mind that we are only looking to gauge your interest at this time and not advocate people take this action. We understand that some people are very private and would not like to share the fact they are unwell with people who they do not know.
    Please tell us what you think of the idea of wearing an accessory or some other item to distinguish yourselves as extremely clinically vulnerable when you are outside of your home ? If you believe there are alternatives, then please also let us know. We’d love to hear from you. We want to hear from as many of you as possible. Please provide your feedback below or if you would prefer to email your answers, please do so at services@myeloma.org.uk

    #141254

    rebeccaR
    Participant

    Hi, I may not be “typical” in the MM world as I have always sought to hide my condition from others – even though I underwent Sct. I have not exactly shielded- shopped throughout and looked after my parents – though am as careful as able and have always worn a surgical mask whilst shopping from day 1 and I walked the dog. I am now out playing tennis but……I have never in all of lockdown felt so concerned as I do now. Social distancing is more or less gone now, shoppers have stopped adhering to the one way system through shops, masks seem to have fallen by the wayside ( except me locally). Whilst walking the dog throughout lock down people gave you a 4 metre wide berth – now nothing! Having said all that, and maybe because I choose to keep my condition a secret, I would not wear anything to differentiate me but – more importantly – the shift in attitude by people leads me to think they would not alter their behaviour for me. I felt safe when everybody else was trying to stay safe and now I feel like a salmon swimming upstream! Because of the swing of attitude from the general public I think I will resign from my job come August in an attempt to stay safe as I believe even those with mild symptoms will not declare it. I am not a cautious person and weigh up risk/reward in life but am very concerned now – but never enough to wear something to single me out – but all indications I have experienced with the shift in change leads me to believe it would be totally ineffective. Would like to have been shielded longer as have no rosy predictions the way things are panning out.

    #141255

    suew1960
    Participant

    Hello
    This is an interesting suggestion. I have never kept my myeloma a secret as such. I will discuss it quite openly but to identify myself by wearing a badge or lanyard for example would be a step too far for me personally.

    After six months of induction I could convince myself I didnt look or feel much different to the casual observer. However losing my hair during STC I found pretty difficult. Then I really felt like a cancer patient and looked like one too. Im sure everyone knows what I mean by the smiles and pitying looks. The “head on one side” with the “How are you?”. All well meant of course, but infuriating at times!

    I am extremely interested to read of Rebecca’s experience of lockdown and the “new normal”. Im sure she’s right. The general public untouched by shielding or covid have clearly had enough. You only have to see the pictures of protests a d beaches to see that.
    Its largely down to us to decide what risks we take on an individual basis I think.
    I count myself very fortunate that I dont have to make decisions about work or sending children back to school.
    Proceed with caution I think is best.
    Remember shielding has only been “paused” I noted!
    Best wishes to all

    Sue

    #141256

    greg777
    Participant

    Hi Ellen,
    I don’t think it would be right for me personally. I have spent most of my time with myeloma yearning for some sort of “normality” so I don’t think it would do me any good psychologically speaking to wear something that reminded everyone I’m not.
    I think the problem is that the ones who don’t care to do social distancing will most likely still not care even if you wear a badge.
    I do think Myeloma UK and other Blood Cancers should focus on an awareness campaign though – something like everyone doing their duty to help those around them by social distancing – and to try to break the connection that many people have that “extremely vulnerable” means old and frail, which in coronavirus terms it definitely doesn’t mean.

    Greg

    #141268

    mark-j-underwood
    Participant

    Sorry, but I don’t think the idea of physically tagging someone is appropriate. It’s one thing to wear a badge showing support of a group or organisation, another to brand yourself as at risk. Assuming any member public will even understand what the badge means. Taking another stance, we already have a badge of honour in the form of masks & gloves, which Myeloma patients should be wearing, even when the Government has said shielding will cease on 1 August. With infection rates still high, deaths still swinging between 170 to 55 per day whilst not wishing to live in a bunker, the risks for Myeloma patients are real and we need to protect ourselves with masks, gloves and distancing, regardless of so called Government advice, which has turned into a race to reopen the economy at any cost. I’ve taken ‘real’ medical advice from the start and it was always safe in my opinion and that of my Consultants to go out and walk in empty streets and the countryside. Is it safe now ? Less so in my opinion as complacency creeps in, our guard drops and we start to mix with the masses on misguided and premature relaxing of guidelines involving the high risk group. My observations from the car are people behaving like idiots at the moment in local towns, with little evidence of masks in shops, people bumping into each other, and my wife advises me in shops people are handing items items multiple times and not distancing.

    Please Myeloma UK, forget badges and establish a framework of ongoing shielding advice for Myeloma patients, not talk about badges or blindly reprint HM Government advice, which we know will put the Shielded Group at risk come 1 August unless there is a miracle and Covid 18 disappears.

    My opinion, as stated; Ignore HM Government advice, continue to wear masks & gloves, give yourself 2 metres distance from others, and stay out of shops because the greatest risk is to be found in enclosed spaces. As a patent who contracted viral pneumonia from a 4 hour care home visit, spent three weeks in a coma on ECMO at Papworth Hospital, suffered a stroke resultant of the treatment, the risks remain high in my opinion until a vaccine is developed or Covid 19 dies into obscurity. On the issue of Shielding, Myeloma UK needs to be far firmer with the Government and better with advice to patients because on the 1st August Covid 19 will have neither disappeared, nor will a vaccine be available. From the evidence from Sweden and elsewhere I have seen, anyone with Myeloma is at high risk from respiratory infection, hence many Myeloma patients being prescribed low dose antibiotics.

    #141273

    rach15
    Participant

    Hi Ellen,

    That’s an interesting question about whether it would be useful or not to have an accessory that marks us out as ‘vulnerable’ as the lockdown restrictions start to ease. I’m a retired SENCO and I guess this is similar concept to the t-shirts that some children with ASD wear saying ‘born anxious’ etc to help raise understanding of the challenges they may face when out and about.

    It’s a question I’ve asked myself and until recently I was weighing up whether to buy a Myeloma UK Hoodie for if/when I go out for a walk for that very purpose. I was also wondering if you would be manufacturing Myeloma UK face-masks? But then of course not everyone would know what Myeloma is. A mask or accessory with the word ‘cancer’ on it might give a clearer message but I ‘like’ Myeloma for not having the word ‘cancer’ in the diagnostic title. It makes it so much easier to say!

    Furthermore, I don’t know if a clearly-worded ‘vulnerable person’ t-shirt might unfortunately antagonise a few people to be extra unhelpful (in the way some people have been known – horribly – to spit at ticket collectors and the police). So it’s certainly an idea worth considering but for me the jury is out at the moment and the opinions given above do seem very much against the idea.

    I will admit that the label ‘vulnerable person’ has weighed a bit heavy during these last months as, whilst being fairly careful since diagnosis in 2012 and not afraid to discuss my condition, I have never looked at myself in this way before. Getting priority slots for online food-deliveries has been a lifeline but comes with a psychological cost.

    And for me personally, I am now suddenly going ahead with a second stem cell transplant so I won’t be out in the community for quite some time to come therefore it is not an issue that I will be facing just yet.

    However thank you for raising this matter on our behalf. It will be interesting to see how other people respond.

    Best wishes,
    Rachel

    #141289

    I think its a great idea to have a badge. It would help raise awarness and help raise money.

    I have no problem in letting people know I’m a VP

    #141290

    marty2019
    Participant

    I think the general public needs to be made aware that some like us are extremely susceptible to infections and diseases even more so now that Covid-19 is floating around. A lot of people live in their own little world and don’t understand or appreciate how their actions (eg poor hygiene and lack of social distancing) impact on others. I feel that to keep our susceptibility hidden perpetuates this. However, whether someone wants to openly publicise themselves as immuno-suppressed should be their choice. Personally, I don’t care who knows that I am. Only once have I been challenged by someone for wearing a mask. When I explained why, they understood. Since then and until recently, whenever I went out I wore a mask with “Stem Cell Transplant” written across the front. I’m thinking of having some t-shirts made up with such a message on the front.

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