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Post by flanz on Sept 18, 2023 16:49:44 GMT
UPDATE 9.21 HUGE heartfelt thanks to all of you who have chipped in to support UKSue and her lovely daughter Rachel in this way, as well as to those of you sending support in the form of prayers and good thoughts. You are all very much appreciated!  We've collectively taken Rachel's fundraising from 7% to an impressive 53% in THREE DAYS!
Let's see if we can get it up to 75% in the next few days. No donation is too small! C'mon team, we can do this!
----------------- Dear friends, If you haven't been following Sue's Prayers Please thread, you prob don't know that her beautiful daughter Rachel is currently experiencing a huge medical challenge related to Covid and lack of timely care/meds. We have the power to remove a large financial burden and source of stress, and several of us have already worked toward that goal. Quoting Sue yesterday:"We've all caught the new covid variant this week and whilst myself and my two boys haven't been too bad( we've all had covid before) my daughter with MS who is immunocompromised has it. She's tested positive this morning after starting symptoms during the night and is feeling really unwell. The service that sorts out antivirals can't release meds until tomorrow after they check her blood test last week- even though they wouldn't have given her her infusion for MS if the results weren't ok. 🙄 I'm so worried about her and very emotional as I'm still recovering myself. All prayers gratefully received for Rachel - she's been such a warrior and was in the middle of training for the London marathon next year,trying to raise funds for MS-UK." "I think she's almost as worried about being thrown off her training schedule than she is about her health 😩 I'm cross that she ran 14 miles yesterday even though she felt a bit 'off'. I think she's also going to end up paying most of the £2,000 herself ( even though she's not working) as we are finding it impossible to get people to support her just giving. She hasn't even reached the lower threshold of fundraising yet. She was also told she would have to pay whether she is able to run or not. It's added pressure I would prefer she hadn't taken on!" Here is the thread I'm referring to: 2peasrefugees.boards.net/thread/141402/prayers in which Sue shared Rachel's fundraising link. Fundraising link: www.justgiving.com/fundraising/rachel-hadley6?fbclid=IwAR3j75Z7TV9g1Ew7wBpgHxK1giWYJubg8GFhWswl952BTYXqGMvKmcYl638It's super easy to donate from the USA if you choose to do so. Thank you for considering this request. **** Yesterday when I logged on Rachel's donations totalled 7% of her goal. Right now, thanks to our pea pod, that is up to 31%!! WE ARE POWERFUL!! |
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Post by ntsf on Sept 18, 2023 17:28:41 GMT
happy to help.. health issues can hit any of else at any time!!!
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uksue
Pearl Clutcher
Posts: 2,505 
Location: London
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Post by uksue on Sept 18, 2023 17:36:13 GMT
You guys are incredible 😢 thank you so much!
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Post by malibou on Sept 18, 2023 17:41:37 GMT
The power of the peas has many times brought tears to my eyes and a swelling of pride and joy in my heart. We are a community that thrills when our lives our good and band together to help when the going gets tough. I love you guys the most!
PEAS ROCK!
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uksue
Pearl Clutcher
Posts: 2,505
Location: London
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Post by uksue on Sept 18, 2023 18:18:17 GMT
The power of the peas has many times brought tears to my eyes and a swelling of pride and joy in my heart. We are a community that thrills when our lives our good and band together to help when the going gets tough. I love you guys the most! PEAS ROCK!There's no other community like it, imo. The care and kindness crosses continents. My daughter isn't really fully with it ATM but I know she's going to be blown away once she fully comprehends. Thinking of the peas we've lost to illness over the years majes it especially poignant. |
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iluvpink
Pearl Clutcher
Posts: 4,298
Location: Michigan
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Post by iluvpink on Sept 18, 2023 18:56:34 GMT
I hope she's feeling better soon and is able to make her goal without paying on her own!
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Post by scrapmaven on Sept 18, 2023 19:04:49 GMT
flanz, you are such a generous and wonderful human being. We're very fortunate to have you on our board. 
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uksue
Pearl Clutcher
Posts: 2,505
Location: London
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Post by uksue on Sept 18, 2023 19:23:17 GMT
I hope she's feeling better soon and is able to make her goal without paying on her own! We still haven't been able to actually speak to anyone in CMDU, who supply the antivirals. They left a snotty message saying we haven't given them her blood results but we don't have then and noone has asked her nurse to supply them. I'm beginning to think it will be too late by the time they get their act together. I finally have a number to ring tomorrow in management in that Trust ( which was like trying to get state secrets) but of course they are only open 9-5 😩 |
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Post by flanz on Sept 18, 2023 19:49:28 GMT
flanz , you are such a generous and wonderful human being. We're very fortunate to have you on our board. Thank you. There are soooo many very generous peas here, including you! xo (How are you feeling now?) |
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leeny
Pearl Clutcher
Posts: 4,645
Location: Northern California
Site Supporter
Jun 27, 2014 1:55:53 GMT
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Post by leeny on Sept 18, 2023 21:49:46 GMT
done - bumping up for more exposure!
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uksue
Pearl Clutcher
Posts: 2,505
Location: London
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Post by uksue on Sept 18, 2023 22:09:49 GMT
Answered the wrong post.
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Post by elaine on Sept 18, 2023 22:18:11 GMT
Since the race is in April, my plan is to make a monthly donation. We are living on my one salary at the moment, so I want to spread it out.
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jayfab
Drama Llama
procastinating
Posts: 5,531
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Post by jayfab on Sept 18, 2023 22:32:31 GMT
Done, hope your daughter can get back to training soon. Sending healthy vibes.
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uksue
Pearl Clutcher
Posts: 2,505
Location: London
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Post by uksue on Sept 18, 2023 23:40:31 GMT
I can't wait for her to see her total when she wakes tomorrow. She's going to be over the moon.
Thanj you all again X
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Post by peasapie on Sept 18, 2023 23:47:02 GMT
Done!!
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Post by ktdoesntscrap on Sept 18, 2023 23:57:16 GMT
42% Let's get her to 50%!!!
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Post by jemmls4 on Sept 19, 2023 3:39:08 GMT
Just donated. Hope things take a turn for the better soon!
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Post by vsimone on Sept 19, 2023 9:24:21 GMT
44% now. Slow and steady wins the race 🤞
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uksue
Pearl Clutcher
Posts: 2,505
Location: London
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Post by uksue on Sept 19, 2023 11:04:51 GMT
Thank you so much.
I'm venting...we still haven't spoken to the actual clinician who decides whether she gets the antiviral. The system is seriously broken and I'm in the middle of composing a complaint to try and spend some of my frustration!
She has no voice now so I'm going to have to speak to them when they eventually get to her- I spoke to someone in the team just now and there's zero urgency, their attitude is they have 7 days to give it to her 🙄
I'm used to speaking to hospitals/Drs etc as I'm a retired NHS nurse/midwife so I'm not in the least intimidated, but on her insta account which is based around MS and running she has numerous messages from people stating they literally gave up trying to get the treatment, and its was more stressful than the actual COVID infection!
My mission once she is over this ( pray Lord!) Is that no-one else will have the same frustration trying to get their treatment in the future!
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wellway
Prolific Pea
Posts: 8,785
Jun 25, 2014 20:50:09 GMT
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Post by wellway on Sept 19, 2023 12:11:35 GMT
uksue, just sharing what I did to move things along when needed. I contacted patient liaison for the hospital involved and lo and behold, I had a call back within an hour from the dept I was trying to speak to for days. Patient liaison have an overview and a master phone list, I assume. Failing that, I'd contact my MP. Mine is very reactive, so for me it would be worth a shot. Basically, make it so it's better to do what's needed rather than have to have the bosses explain to an MP in writing.
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uksue
Pearl Clutcher
Posts: 2,505
Location: London
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Post by uksue on Sept 19, 2023 13:50:16 GMT
uksue, just sharing what I did to move things along when needed. I contacted patient liaison for the hospital involved and lo and behold, I had a call back within an hour from the dept I was trying to speak to for days. Patient liaison have an overview and a master phone list, I assume. Failing that, I'd contact my MP. Mine is very reactive, so for me it would be worth a shot. Basically, make it so it's better to do what's needed rather than have to have the bosses explain to an MP in writing. Thanks. I have already spoken to patient liaison but they won't intervene as they say she is already 'in the system'. Our MP is currently MIA as he is under investigation fir a serious SA- has been for a year, he's apparently sitting home on full pay and his office is stagnant. That's a while other frustration we are dealing with in this area, as the Tories are protecting him ( despite the fact he's been in trouble previously for expenses infractions and claiming for a second home even though he lives a few stops away from the houses of parliament in my constituency!) They were even ok with an innocent MO being 'outed' as the person under investigation and that poor guy still gets grief over it! It's an open secret here however. I've now emailed the CEO at St Bart's which is where our CMDU is based. |
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Post by workingclassdog on Sept 19, 2023 14:01:31 GMT
Glad I saw this.. I was able to donate a little....  |
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uksue
Pearl Clutcher
Posts: 2,505
Location: London
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Post by uksue on Sept 19, 2023 14:35:43 GMT
Glad I saw this.. I was able to donate a little.... Thankyou so much! Even a £/$ is a help so we're beyond grateful. She's finally been assessed and is supposed to received her antiviral meds by 10 tonight. It's been so stressful and I'm definitely going to try to make it easier for people in the future. I've actually contacted a health journalist about it, so we'll see what happens. |
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wellway
Prolific Pea
Posts: 8,785
Jun 25, 2014 20:50:09 GMT
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Post by wellway on Sept 19, 2023 14:40:15 GMT
uksue, that is a good update.
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Post by flanz on Sept 19, 2023 15:45:00 GMT
That's great to hear, Sue. Of course, it should have happened much sooner though! I applaud your efforts to try to ease the path for others going forward. <3 And woo hoo to all the peas who have helped Rachel reach 45% of her fundraising goal!  |
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Post by malibou on Sept 19, 2023 18:37:00 GMT
So pleased to hear she will get her meds today. uksue, thank you from the bottom of my heart for doing what you can to fix a broken system. I wish you all the success. |
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uksue
Pearl Clutcher
Posts: 2,505
Location: London
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Post by uksue on Sept 19, 2023 19:49:45 GMT
So pleased to hear she will get her meds today. uksue, thank you from the bottom of my heart for doing what you can to fix a broken system. I wish you all the success. I can but try! So after initially being assessed on Sunday morning at 9am ( when they opened) she has just received her meds ay 20:48hrs UK time. Unbelievable- I'm not even sure she would have them yet if I hadn't spent most of the day in the 'ohone and email! |
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Post by librarylady on Sept 20, 2023 15:59:04 GMT
It is up to 48% of her goal.
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uksue
Pearl Clutcher
Posts: 2,505
Location: London
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Post by uksue on Sept 20, 2023 16:25:16 GMT
It is up to 48% of her goal. Thank you for your support xxxx She's feeling a little better today- I think she's over the hump with this. I'm so relieved. I know the support and messages in her fundraiser have really bolstered her spirits- it's ironic that we've had no luck locally trying to get support, but lovely people in America and Australia ( I'm sorry if I've missed a country, I'm just going hy what I can see on her page) have been so generous Thankyou also to the UK peas who don't know us personally who have also chipped in xxxx |
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Post by gar on Sept 20, 2023 16:57:13 GMT
50% achieved! Well done Peas  |
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