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Post by joblackford on Mar 12, 2022 21:57:59 GMT
A lovely lady I follow on Instagram has brain cancer and is trying to live a little longer but she's out of options except for one - OPTUNE. Unfortunately she's in the UK where the OPTUNE device is not covered by the NHS. I'm hoping that UK Peas might consider signing this petition to ask for this treatment funded and sharing with other UK friends. Thank you! I'm not usually on this side of the boards but I'm hoping that there are lots of UK Peas or people who know people in the UK who can help. I wish I could sign the petition myself. So many people are seeing her requests on IG but can't help because they're overseas.  The petition: petition.parliament.uk/petitions/610898The lady, Nancy: www.instagram.com/avocadofairy/Her story: www.bbc.com/news/uk-england-hampshire-60690744Info about the device (US FDA approved): fact sheet
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Post by gillyp on Mar 12, 2022 22:28:54 GMT
Happy to sign and share.
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Post by gar on Mar 12, 2022 23:27:55 GMT
Just about to turn out the light but I will come back to this is the morning 🙂
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zella
Pearl Clutcher
Posts: 3,884 
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Post by zella on Mar 13, 2022 14:21:33 GMT
Just in case this helps... my sister was trying to set up an appointment to be assessed for this device when she died. It was her last option too. A while later I saw a man wearing one at the ferry terminal back in Seattle. I went up to him and asked him about it. He said it had changed his life. What an amazing thing for a brain tumor that is considered 100% lethal, often in less than a year. I am very happy to sign this petition. It absolutely should be available on the NHS.
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zella
Pearl Clutcher
Posts: 3,884
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Post by zella on Mar 13, 2022 14:47:58 GMT
This was the first time in ages that the fact that I never rescinded my UK citizenship came in handy!
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Post by joblackford on Mar 13, 2022 18:51:12 GMT
Thank you for your help! Nancy announced that she has finally hit 10,000 signatures so the petition will be considered by the UK government, good news, but just the first step. I felt so bad seeing her get huge numbers of views on IG but not many signatures. She was losing hope. So thank you, thank you, thank you. zella I did a quick search before I posted this and saw your old posts about your sister's experience. I was so sorry to hear that she didn't live long enough to get this treatment. It's such a devastating illness. I'm so glad you were able to sign. |
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zella
Pearl Clutcher
Posts: 3,884
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Post by zella on Mar 14, 2022 1:47:21 GMT
Thank you for your help! Nancy announced that she has finally hit 10,000 signatures so the petition will be considered by the UK government, good news, but just the first step. I felt so bad seeing her get huge numbers of views on IG but not many signatures. She was losing hope. So thank you, thank you, thank you. zella I did a quick search before I posted this and saw your old posts about your sister's experience. I was so sorry to hear that she didn't live long enough to get this treatment. It's such a devastating illness. I'm so glad you were able to sign. Thank you. Yes, it was ridiculous how fast she died. First obvious symptom to death was less than 3 months with chemo and radiation. This treatment is so very important. |
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Post by phoenixcov on Mar 14, 2022 10:31:26 GMT
I`ve signed. Really hope the lady gets the treatment she needs.
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Post by joblackford on Mar 15, 2022 4:07:31 GMT
I`ve signed. Really hope the lady gets the treatment she needs. Thank you! |
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Post by malibou on Mar 15, 2022 15:12:51 GMT
Dh has UK citizenship, I've sent a message for him to go sign.
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Post by rst on Mar 15, 2022 18:44:37 GMT
A while later I saw a man wearing one at the ferry terminal back in Seattle. I went up to him and asked him about it. He said it had changed his life. What an amazing thing for a brain tumor that is considered 100% lethal, often in less than a year. I am very happy to sign this petition. It absolutely should be available on the NHS. Zella, I wonder if the man you saw was our dear friend (my son's former Physical Therapist of many years.) His life has been prolonged by use of the device, and he's living a rich and full life for as many days as he is alloted. I'm so thankful that he's had access to excellent care. Wishing all the best to Nancy, from the OP. |
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Post by dizzycheermom on Mar 16, 2022 0:24:42 GMT
My grandma passed away in 2004 from a glioblastoma after only 9 months. Also found out last summer that one of hubby's cousins is using this device to fight hers. I think she has been using it for a couple years, but not positive about that.
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