Goodness me! IT WORKED! IT REALLY WORKED! My doctor is incredible and has worked so, so hard on this.Thank you so much for all of the support, from the petition and just as a human being! We picked up the first canister this morning! xxx
happy for you my friend. im from maui hawaii and im going through the beginning stages of dysmotility. what caused it was a suicide attempt as i overdosed on a drug called seroquel. it screwed up my intestines. i love the courage you posses. your strength inspires me. it helps me believe that i can make it through as well. thank you hannah. ill make sure to subscribe to your channel to keep up to date on your videos.
Hey Hannah, I’ve just come across this. I’m in the uk too and have been prescribed this for many years now. Really surprised to see there’s others out there with this too
Oh sweetheart I’m so glad! It feels so long ago since I was signing and sending the link off everywhere on social media! I’m so relieved and happy for you what a relief! Sending so much love xx
I am so glad I found your channel. It was recommended by one of your views Sharla Carter and I was just diagnosed (5 mos ago) with pots. It is nice to relate to others who have the same problem. I look forward to your posts and to Sharla Carter....Thank you so much!
So happy for you! Seems like such a long time ago that I signed the petition & got my friends to sign it too, I’m sorry you had to go through all of this in the first place but I’m so happy it’s finally paid off for you! 😊🎉
Georgina's Journey thank you! It has been a really tough year, I would LOVE a Skype session if you’re ever free. I know I have been crap at getting in touch xx💕💕
I am really glad you got the entenox at home, I am so glad I signed the petition, you look so very happy to have something so simple that will make such a change to your life. I am wondering if this 'should' be the end of the petition or if perhaps you might keep it going to champion those needing similar changes in their palliative care. I have to admit I don't know if you can change it on change.org to be a campaign for more or if it would have to be a new petition. Good work getting this started and on to a fruitful conclusion :)
nicessus2006 I feel exactly the same way. I want to do that, but at the minute need to take stock (I have a big surgery coming up) and get a plan of attack. It’s so complex in England alone. Every single clinical commissioning group (and there are over 190!!) has autonomy to decide whether they will approve medications for use at home or not. A petition would be asking the government to take back the powers of decision for palliative care patients from these local groups - and then we run in to issues of them deciding people who currently have a drug under their CCG, may not be able to have it under the nationalised system. My thinking is that we ask for current drug prescriptions to be safeguarded, but for the government to prescribe any drug needed by palliative care patients... anyway, it’s complicated! Stay tuned, I do want to do more on this!
@@HannahHodgson thank you so much for your reply. I know it is complicated, our NHS isn't really a national health service anymore, it really is a postcode lottery on whether or not you get the exact same treatment as a person in the next village, town, county or you get better or worse treatment. Safeguarding current prescriptions is absolutely vital to ensure the service does not deteriorate further. When you actually look at the NHS as it is now you become fully aware of what an enormous task it would be to recreate the fair system it was before. I worked in the NHS before I fell foul of treatment differences which meant I could no longer perform my job, almost ten full years before I got the treatment I needed to be a functioning member of society again. That was thanks to new treatments admittedly but those treatments were available in different districts for years before it eventually was approved for funding by my own commisioning group. I was also really lucky to be deemed fit to have the treatment I got, meaning it was a benefit not just to me but it would help me into employment again. I wish you all the best in managing your condition and I really hope you get continued support from the NHS
Josephine Dickinson Thank you Josephine! I’ve just taken my aids out and have watched this with closed captions, the automatic ones are awful, I’m so sorry! Xx
Darling Hannah I am so happy for you finally you have a new and much needed Xmas present I understand your condition as my young niece has the same condition 🎅🎅🎅
Dear Hannah, I am over the moon! You are so loved and cherished. I wonder what would need to be done so that you were not the only person who could have this drug at home? Maybe have someone make up a sort of flyer that could be available at hospice centers? Or a computer document that could be shared with doctors and carers? Maybe something combing a bit of your appeal along with a bit of your doctor's essay? God bless you!!!!!!!!! xo
Rachael Collinson I’m so sorry to hear that. I didn’t qualify but my doctor took it to a special consideration board. Explain why other options haven’t worked and try to make managers realise that things are unbearable for you as they are. If the doctor is the problem I promise it is worth the upheaval of looking around. Try and find other people in the community (there are multiple in many countries) and ask the difficult question that no one can wriggle out I’d - why do they get it, and not you? Sending hugs, Hannah xx
I used entenox pretty much every week, I had to take a break because I became immune, I dislocate daily, I have hypermobility, distonia and hypertonia:)
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Goodness me! IT WORKED! IT REALLY WORKED! My doctor is incredible and has worked so, so hard on this.Thank you so much for all of the support, from the petition and just as a human being! We picked up the first canister this morning! xxx
So glad that common sense has finally prevailed in your case and I am really glad for you. Hoping that your precedent will help others in the future.
Congrats to you! Great job to advocate for what you need. I am sending you a card from the state of Minnesota in the USA.
happy for you my friend. im from maui hawaii and im going through the beginning stages of dysmotility. what caused it was a suicide attempt as i overdosed on a drug called seroquel. it screwed up my intestines. i love the courage you posses. your strength inspires me. it helps me believe that i can make it through as well. thank you hannah. ill make sure to subscribe to your channel to keep up to date on your videos.
Congratulations, Hannah! That is THE best news! XX
Oh my god this is the best news Hannah! I am so excited and happy for you now that you have access to the drug to help you out!
Hey Hannah, I’ve just come across this. I’m in the uk too and have been prescribed this for many years now. Really surprised to see there’s others out there with this too
Oh sweetheart I’m so glad! It feels so long ago since I was signing and sending the link off everywhere on social media! I’m so relieved and happy for you what a relief! Sending so much love xx
Fantastic news Hannah!! So happy for you x
so so pleased you've managed to get this! I really hope it provides so much relief for you. xx
I am so happy for you, Hanna, hope this will really work for you and will make your life a bit better. x
Hi.
So happy for you and it proves that there is good people out there willing to help.
You just have to ask. 😊😊😊😊
I am so glad I found your channel. It was recommended by one of your views Sharla Carter and I was just diagnosed (5 mos ago) with pots. It is nice to relate to others who have the same problem. I look forward to your posts and to Sharla Carter....Thank you so much!
Yay I'm so happy that you got access to it!!! :)
Yes!!!!! So, so, so happy for you xxxxxx
So happy for you! Seems like such a long time ago that I signed the petition & got my friends to sign it too, I’m sorry you had to go through all of this in the first place but I’m so happy it’s finally paid off for you! 😊🎉
Georgina's Journey thank you! It has been a really tough year, I would LOVE a Skype session if you’re ever free. I know I have been crap at getting in touch xx💕💕
I am really glad you got the entenox at home, I am so glad I signed the petition, you look so very happy to have something so simple that will make such a change to your life. I am wondering if this 'should' be the end of the petition or if perhaps you might keep it going to champion those needing similar changes in their palliative care. I have to admit I don't know if you can change it on change.org to be a campaign for more or if it would have to be a new petition. Good work getting this started and on to a fruitful conclusion :)
nicessus2006 I feel exactly the same way. I want to do that, but at the minute need to take stock (I have a big surgery coming up) and get a plan of attack. It’s so complex in England alone. Every single clinical commissioning group (and there are over 190!!) has autonomy to decide whether they will approve medications for use at home or not. A petition would be asking the government to take back the powers of decision for palliative care patients from these local groups - and then we run in to issues of them deciding people who currently have a drug under their CCG, may not be able to have it under the nationalised system. My thinking is that we ask for current drug prescriptions to be safeguarded, but for the government to prescribe any drug needed by palliative care patients... anyway, it’s complicated! Stay tuned, I do want to do more on this!
@@HannahHodgson thank you so much for your reply. I know it is complicated, our NHS isn't really a national health service anymore, it really is a postcode lottery on whether or not you get the exact same treatment as a person in the next village, town, county or you get better or worse treatment. Safeguarding current prescriptions is absolutely vital to ensure the service does not deteriorate further. When you actually look at the NHS as it is now you become fully aware of what an enormous task it would be to recreate the fair system it was before. I worked in the NHS before I fell foul of treatment differences which meant I could no longer perform my job, almost ten full years before I got the treatment I needed to be a functioning member of society again. That was thanks to new treatments admittedly but those treatments were available in different districts for years before it eventually was approved for funding by my own commisioning group. I was also really lucky to be deemed fit to have the treatment I got, meaning it was a benefit not just to me but it would help me into employment again. I wish you all the best in managing your condition and I really hope you get continued support from the NHS
I'm so SO happy this finally came along for you! Can't imagine how it must feel. You look so relieved and you're just shining!
Lots of love and well done Hannah! XXX
Josephine Dickinson Thank you Josephine! I’ve just taken my aids out and have watched this with closed captions, the automatic ones are awful, I’m so sorry! Xx
I'm so happy for you, Hannah! This was wonderful news to see in my feed!
Great News
Darling Hannah I am so happy for you finally you have a new and much needed Xmas present I understand your condition as my young niece has the same condition 🎅🎅🎅
Dear Hannah,
I am over the moon!
You are so loved and cherished.
I wonder what would need to be done so that you were not the only person who could have this drug at home? Maybe have someone make up a sort of flyer that could be available at hospice centers? Or a computer document that could be shared with doctors and carers? Maybe something combing a bit of your appeal along with a bit of your doctor's essay?
God bless you!!!!!!!!! xo
Miss you bunches!
I'm really happy for you hannah.. I don't qaulify for the entinox even though my knees/any joint dislocates at least once a day.. I hope it helps you
Rachael Collinson I’m so sorry to hear that. I didn’t qualify but my doctor took it to a special consideration board. Explain why other options haven’t worked and try to make managers realise that things are unbearable for you as they are. If the doctor is the problem I promise it is worth the upheaval of looking around. Try and find other people in the community (there are multiple in many countries) and ask the difficult question that no one can wriggle out I’d - why do they get it, and not you? Sending hugs, Hannah xx
Congratulations! :-)
I used entenox pretty much every week, I had to take a break because I became immune, I dislocate daily, I have hypermobility, distonia and hypertonia:)
Hi I have jhs I can dislkat and I get a lot of pain all the time
What does it feel like?
Are you okay? I muss you.