information , to those who might need it - Fibromyalgia Acti...

Fibromyalgia Action UK

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information , to those who might need it

trevdee•

5 years ago•13 Replies

Hi All I just came across this and thought it might help some of you if needed please follow the link

gov.uk/coronavirus-extremel...

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trevdee

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13 Replies

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desquinnPartnerVolunteerFMAUK Trustee5 years ago

if people need this link then they should already have received the letter or text. People on this site will not be on this list due to their fibro,

• in reply todesquinn5 years ago

I received my txt and a letter by post at the beginning of last week. I then had to go to this link and complete a form. I then received a phone call confirming I am now registered and I had my first food parcel arrive last Friday, very useful box containing a weeks supply of basic foods, tins , packets, toilet rolls , washing items , they are also able to bring food for my dogs. All of this is free, but only to those who are on the very vunerable list health condition list.

Even if you go to the .Gov site and start filling in the forms, if you didnt received a letter and txt you are unable to complete the forms , many have tried , ive seen it alot on social media

desquinnPartnerVolunteerFMAUK Trustee• in reply to5 years ago

thanks Hidden for the feedback on this. Good to see the system working.

• in reply todesquinn5 years ago

Your welcome, not on these forums, but social media I have seen so many people complaining they they too have COPD or or other health problems and didnt receive a txt or letter, my reply to them has been quite simple, if you didnt receive a letter be thankful that your COPD or whatever other illness hasnt been deemed the worst of its kind. While I agree there are other people with similar conditions, some have it milder than others. I for one am very grateful for the food and help, but would I swap it for better health, most certainly XX

desquinnPartnerVolunteerFMAUK Trustee• in reply to5 years ago

totally agree, we have had some asking us to help promote people with fibro getting onto the shielded list but have explained it is not a good use of our time and not to the benefit of society as a whole. My OH is on the shielded list but in Scotland so things happening differently. But she would have much rathered not getting a letter as well.

But we will still not take advantage of the scheme if it is similar here as I can get out and get essentials.

• in reply todesquinn5 years ago

Sadly im home alone with no living relatives for over 110 miles X

desquinnPartnerVolunteerFMAUK Trustee• in reply to5 years ago

so just who the system is meant for. Take care.

trevdee• in reply todesquinn5 years ago

It tells you when you open up the forms , copd , cancer , I think mental issues are in there also and other things , but that said it does tell people to apply even if they think they do not need help

desquinnPartnerVolunteerFMAUK Trustee• in reply totrevdee5 years ago

The conditions are listed below and does not include mental health.

Also it says "register and tell us whether or not you need support." But only if you are on the list. The idea as I read it, if my other half was in England then we would register her and day we do not need support.

gov.uk/government/publicati...

Mythago• in reply todesquinn5 years ago

We should be very relieved we are not on that list. Those with comorbidities will be passed over for having a ventilator should they need one. Intensive Care are having to make tough decisions about who is more likely to survive, and those will be prioritised as there are not enough ventilators.

If you do end up in Intensive Care, don't let on you've got anything else wrong with you. They are triaging people quickly beforehand and maybe just going on our answers to questions. Try to look 'robust'!

desquinnPartnerVolunteerFMAUK Trustee• in reply toMythago5 years ago

I think that is a more stark representation than reality. Doctors are always making these decisions and areas like transplant are the ones that we are aware of. A lack of ventilators, staff or other resources are why we are staying at home to take the pressure off the NHS

But a ward or hospital is a microcosm that may have enough capacity one day or stretched the next depending on what stress they are under. Doctors will consider who needs what on clinical need. Patients that are shielding will be more difficult cases but doctors are looking to save everyone they can.

Not being honest with your doctor is the quickest way to help them make a mistake about your care and you to be worse off as a result. Do not hide anything from them and trust in their professionalism.

trevdee5 years ago

received our letter today and registered , will update if anything transpires as the government stresses that we have to stay in for 12weeks

• in reply totrevdee5 years ago

Within 24 hours of registering I was contacted by the team in my area, they asked a few general questions like allergies, asked to confirm my details and my first box of shopping was delivered 3 days later.