International Alliance Of Patients' Organizations

Legal permission will no longer be required to end care for patients in a long-term permanent vegetative state, the Supreme Court has ruled.
Patients can only give their legal consent to receive or DENY treatment when they have capacity. Adults (over 18 or mature child- adolescent) who are not under duress or pressure and have all the mind and sensory faculties to hear, see and understand the treatment options can give their legal consent to DENY treatment.
Patients without ...capacity, especially patients in a long-term permanent vegetative state, had a three stage mechanism protecting their 'best interest'. More than one doctor must first agree that there is no chance of recovery, the carers and/or family must concur with the doctors, and then you go to the Court of Protection, as a belt and braces measure to prevent the clinical care team and hospital being sued by the carers and/or family. The Court of Protection through the Official Solicitor will then appoint someone to advocate on behalf of the patient to maintain his/her best interest.
In such a traumatic time, the Supreme Court as now ruled that when families and doctors are in agreement, it serves justice that the medical staff will be able to remove feeding tubes without applying to the Court of Protection.
However, the back stop still remains that when families and doctors are NOT in agreement, you will still need to apply to the Court of Protection.
https://bbc.in/2K7Nd9G
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At last we have our first Entebbe Uganda wish come true.
We have had the ratification of the African Medicines Agency Treaty thanks to @Nepad_AMRH
We now wait for the second and third wishes that AMA recognises patients as key partners and adopts a legally binding patient engagement framework to ensure quality and safe medicines for all African patients from Cape to Cairo and Dakar to Djibouti https://twitter.com/NEPAD_AMRH/status/101 7746992569692161 ... See: Entebbe Statement https://bit.ly/2L2R65m
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This Thursday 5 July 2018, the world’s oldest universal health coverage (UHC) will be 70 years old! The National Health Service (NHS) in the United Kingdom will be two scores and ten old.
The NHS has driven enormous global clinical and therapeutically innovation and returned handsome dividends on the initial capital invested beyond healthcare outcomes envisaged by acting as a democratisation and unifying force in a country that had just started recovering from the post-World... War II calamity in 1948. Many believe that were it not for the NHS, Britain would have been a different society and plagued by social disorder and inequity that we saw in the rest of the world post World War II.
The extensive celebrations, starting with the BBC allocating a whole week on a whole channel to cover the NHS story, are marking the contribution of patients and charities (non-profits). On 5th July we will remember the patients who underwent high-risk experimental heart and other organ transplant operations, and allowing themselves to be injected with toxic chemo-therapies and equally dangerous radiotherapy with high doses of gamma rays to advance cancer care. Were it not for the few hundred who laid down their lives to advance science, you, I and others wouldn’t be here. We now enjoy CT and MRI Scans, monoclonal antibodies and key-hole surgery.
But what is little known is that there was tremendous resistance from charity hospitals and faith operated managed clinics when nationalisation of healthcare was first announced. These groups are now firm supporters of the NHS and integrated within its decision-making and operations field.
Today the big charities like Cancer Research UK, Nuffield Trust and Diabetes UK have all raised monies and funded critical research. Rare diseases groups are now at the vanguard of financing research. From subjects to co-designers and collaborators, patient advocacy has been a mile high leap in patient centricity in the NHS !
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Google today marked the life of a great patient advocate who pioneered patient centred palliative healthcare. Dame Cicely Saunders founded St Christopher’s Hospice in 1967. It was the first hospice linking expert pain and symptom control, compassionate care, teaching and clinical research.
We must remember that patient centred healthcare is a life course need. A sick child or a dying old person, we all need the compassionate care.

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Patient advocates can take a lesson in optimism from the Masters who grow bananas in London!
These are people who have vision, patience and character to persevere in our northern climate with a delicate tropical plant. They push with their sinews, and hold their corner with heart and courage, and win over each winter and season with their character.
One home near our offices has surprised us. We photographed their 10 year old banana plant in full fruit last summer, and then... again in winter when it was dormant and dying back.
We have noticed new fronds appear this spring. We will be taking a picture in July again to see the rich luxuriant fronds. To complete the cycle, we will see it once again in August to see the fruit!
The owner promised us one banana-this will be the best banana we have had, he so promises!
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Many of you met Bakken Honorees from Africa, Latin America and North America at the 8th Global Patient Congress 2018. These were exceptional patients who have really contributed towards improving not only the health of their fellow patients, but also changing health systems and their communities. These patients receive training and travel grants to improve their skills and impact.
Honorees are invited to Hawaii (Earl Bakken's current home) for five inspirational days of lead...ership sessions and networking with others who are making the world a better place through advocacy, innovation and volunteering. They are also recognised by Earl Bakken as leaders in driving change and transforming healthcare.
The event includes air transportation, meals and lodging for two in Kona, Hawaii from Jan. 9-14, 2019. Honorees leave the event inspired, equipped with new skills, and connected to a broader network of individuals who also are transforming health in their communities.
Medtronic Foundation is now inviting 2018 applications. IAPO would like to see its advocates join them this year. People age 14 or older who received eligible medical technology are welcome to apply, regardless of device manufacturer. For a complete list of requirements and the official rules to submit an application, visit liveongiveon.org before July 18, 2018.
https://bit.ly/2LMsZEy
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When our mobile phones suddenly went off with an auto-mated national #HurricaneWarning at 4 am in Miami Marriott Dadeland Florida last week, delegates at the 8th Global Patients Congress 2018 looked confused. Many came from more temperate and sheltered climates and this was outside their experience. We followed the example of the locals who ignored them and continued #businessasnormal. They could be forgiven for ignoring them, as Miami residents and those in #KeyWest are built of harder stuff. This #dejavue and a #ohnonotagain moment was normal to them. For our hosts community the aftermath #HurricaneIrma still remains to be cleared in their mind if not on the ground. We wish you kinder weather this year. Thanks for taking care of us @MiamiHerald
Hurricane Irma https://hrld.us/2J2Ivun

Under 20 days left to lift-off #GlobalPatientsCongress2018 #MiamiInMay. #Florida awaits you with a warm welcome. The weather is predicted fine. Don't forget the suntan lotion, light clothing, sandals and a hat!

#GPC2018. #MiamiInMay Florida is the #RetirementState of the #USA and #Miami is the #CruisePort of the world. Add the two and and you get this amazing story of a senior citizen #ulysses. Constantly cruising the seas and saving money by not going into a #carehome and getting high standard social support, free patient centric healthcare and staff attending her every need while perpetually cruising end to end. https://bit.ly/2I3Fmxc https://youtu.be/3zxOwjlcJUY

The GPC 2018 Organising Committee paid a site visit to the Miami Marriott Dadeland hotel and looked at accessibility and the facilities. It also assessed the amenities in and around the area and passed the venue with flying colours. The airport and hotels are at the end of the line 45 minutes. You get on the train and fall asleep and the guard wakes you up at the end of the line! For our LatAm members, 'everybody' speaks Spanish in Miami. You have over 200 LatAm restaurants.

With #GPC2018 just around the corner, the planning committee has tested it all; the hotel, food, shopping, South Beach & water temperatures to ensure you have the best and most comfortable experience at the Congress, 24-26 May in #Miami. If you are yet to register,do it now: http://bit.ly/2E4rOwQ

More @IAPOvoice has established a travel grants scheme aimed at supporting our members attend #GPC2018 . The deadline for applying is Sunday 18 March 2018. Click here to apply: http://bit.ly/2oU8Z8e

We are really excited to know that the three big medicines regulatory authorities have indicated that they will have a patients liaison team officer speaking at our Global Patients Congress 2018 in Miami in May. The Medicines Regulatory three tenors will sing from one hymn sheet and harmoniously in Miami! The FDA, EMA and the AMA ( Nepad representing them) will talk about how they have engaged patients. A session you should not miss! The Three Tenors 1994 http://bit.ly/1BAAPp7

Want to explore how treatments in development can be accessible for all patients living with chronic pain? We: @IAPOvoice, @FindMeCure @ChronicPainIRL are hosting a webinar on 2 March 2018 at 3 pm GTM/10 am EST. Join us by registering here: http://bit.ly/2sEdhFW #GPC2018
You will benefit from this webinar if: - you are a patient living with chronic pain and want to understand how clinical trials are run. - you are looking to find out more about treatments in development.... - you are heading a patient community/organization and want to help your members save their time and efforts.
You will learn: - What are the challenges of chronic pain patients in Ireland and Europe? - How are new treatments being developed and how to benefit from them now? - What are the pluses and minuses of participating in a clinical trial? - How can you find more about available clinical trials and how to take part in them?
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The United Kingdom has one of the oldest universal health coverage- the National Health Service. It is 70 years old in July this year. The #NHS70 is loved by the UK citizens because as a #UHC set-up in the aftermath of the Second World War and a devastated UK and Europe, it brought about societal cohesion, reduced inequalities and became one of the most powerful institutions for bringing about peace, justice and equity. The NHS spawned other powerful and strong civil society ...institutions like the #BritishMedicalAssociation. The SDGs has hinted that Target 3.8 UHC is essential for hitting all other SDG developmental goals!
So you can imagine the furore caused in the UK by realDonaldTrump when he tweeted that the NHS was broke and not working and implying that #UHC was dead. This came at the tail end of the tweeted strategy to kill #ObamaCare through a death by thousand cuts http://bit.ly/2EHC2DN
At our 8th Global Patients Congress 24-26 May 2018 we will put these two views head-to-head and discuss about the global rolling out of UHC under the SDG2030 target 3.8. Join us and put your opinion through.
We will have Taipei Taiwan UHC, NHS70, Brazilian SUS, Obama Care and others on the table in Florida- the Retirement State of USA!
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In case you missed it, our February #newsletter is out and packed with the latest updates on our efforts towards patient empowerment. Story 1: Why come for #GPC2018? Story 2:New Launch: Advocacy Fieldbook Read it here: http://bit.ly/2BlIjFD #GPC2018

#SouthKorea 90 year old women #haenyeo #seadivers keep very fit diet and exercise #winterolympics2018 http://bit.ly/2H7OjlI

Why should you register and come for #GPC2018? As many organisations working in Patient Empowerment around the world don’t work together, we plan on coming together to plan on how best to leverage all our resources to facilitate broader communications, broader awareness, and broader accessibility to timely and useful information for true #patientempowerment. Register by following this link: http://bit.ly/2E4rOwQ

Hello I like muchisimo his(her,your) work I am an educator of anemia of cells falciforme of the patronage of the diseases corgenitas and hereditary of Dominican republic. And me gustaria to know mas of you. A saludos

A voice for the good of all.

Hello I like muchisimo his(her,your) work I am an educator of anemia of cells falciforme of the patronage of the diseases corgenitas and hereditary of Dominican republic. And me gustaria to know mas of you. A saludos

A voice for the good of all.

Hello I like muchisimo his(her,your) work I am an educator of anemia of cells falciforme of the patronage of the diseases corgenitas and hereditary of Dominican republic. And me gustaria to know mas of you. A saludos

A voice for the good of all.

Hello I like muchisimo his(her,your) work I am an educator of anemia of cells falciforme of the patronage of the diseases corgenitas and hereditary of Dominican republic. And me gustaria to know mas of you. A saludos

A voice for the good of all.