Technology

[MALC19]

I had a check up call from pain clinic in July.

My specialist physio is on extended sick leave due to ill health (she has fibro too) and The lead of pain clinic has left for a better job. These 2 wonderful women have been helping with my health for 3 to 4 years so i was very dismayed as the 2 people that really understood and all my other health issues were no longer my going to deal with me, i felt like crying!!

Anyway got a bit side tracked there 😂 so when this new guy asked how i was etc (after telling me the worst news i could hear) so he said partly due to covid the hospital Royal Free in Hampstead, London (you may have heard of it) are going to do a trial to get people who suffer with chronic pain to join a social media group, from our own homes. He explained they will speak to everyone on this group and will have doctors and consultants on it too so that collectively we can all ask questions, listen to what they have to say and everybody can join in, great i thought sounds really interesting, only to realise then the horror that it involves technology.

I am useless with all this kind of stuff BUT my son is an IT Technician, so i spoke with him about it and he is overjoyed, as he has seen me suffer for over 30 years.

My son is going to help me with it all and teach me how to use social media.

The Royal Free are currently in the process of getting it all sorted out and i was told it could take a few months but i am anxious and excited to see and hear what happens.

Who knows this could mean one day all of us that suffer with chronic pain may be able to talk to specialists in this way and not have to leave our own homes.

Has anybody else been offered this chance?

Hooray the marvels of Technology.

I wish everybody to keep well and i will keep you posted 😊

[Greenpeace]

Hi MALC19 , that is good news. At least you haven’t just been left without any support at all.

As far as using technology to have Consultations with Health Practitioners, that is the way that the NHS is going to be working in the future, and indeed a lot of GP practices and Hospital Appointments are doing that just now.

I feel it’s good way forward, but also worry about those who can’t or won’t use Social Media. I’m assured that there are plans for those patients. Also, if there is any doubt about a patients wellbeing on the initial contact, the patient will always be seen face to face.

This way of working does have its advantages. For instance, I have done the round trip of 32 miles to see a Consultant at our nearest hospital., I wait to see them, have a quick chat, and out the door with “we will see you again in 6 months”. I could easily do that on a Zoom call without leaving the house.

Don’t be afraid of Technology. If you can use a Smart Phone and send emails and texts you are already using Social Media to contact people. Let your son help you, and then you’ll be confident when you join other people in a group chat.

Good luck.

GP. 😊😊

[MALC19 in reply to Greenpeace]

Thank you for your reply.

Hope it will be a better way to communicate with Doctors etc, it will be so much better than having to try getting to appointments as you say especially in weather like today.

I am really trying with all new technology. Since lockdown i have learned how to facetime family & friends but only if they contact me first so i just have to use the green movie camera as their contact details are on that 😂

I can now reply to emails but still don't know how to contact them first.

I am learning bit by bit, its just remembering, as my brain fogs do not help with that issue.

Im hoping it will be good for people like us, with fibro & ME when we really cant get out in the cold & rain and makes our symptoms worse.

I suppose we all have to learn.

Take good care and stay well 😊

[Hazel_Angelstar Administrator FMA UK Staff]

Great news, and please keep us updated on how it goes and whether you find it helpful

Covid restrictions will hopefully lead to more online access to specialist support in the future - especially for those who maybe don't have a specialist fibromyalgia clinic in their area

[Hidden]

Hi Malc

That’s marvellous please let me know how you get on will be really interested to know.

Panda 🐼🥰

[Midori]

Hi MALC19.

Like you , I'm rather a Luddite. All the modern tech whizzes past me.

I've had my first Smartphone for a few months now, and all I can do is use it to receive messages, look up the current weather forecast, and I took my first call on it today!

Although my pc is also new, my monitor doesn't have a camera, good, I wouldn't want my face breaking other folks Screens! I have a pc because I can't get along with a laptop, the mouse thingy is weird, and I'm so out of date I can't even remember how to cut and paste!

But it's great that you have this hope of a video call for the future.

Cheers, Midori

[MALC19]

Glad to hear i am not the only person to struggle with technology. It scares and baffles me at times, especially with brainfog often.

I am trying to figure it all out. My husband helps me as much as he can but his knowledge is limited too, but much better than mine.

I have no idea when this video calling will be up and running though, will keep you all updated.

Take good care and keep well. 😊

[Midori]

my son is my port of call for internet problems!