health care

43 petitions

Update posted 6 days ago

Petition to NHS England, National Institute for Health and Care Excellence, Theresa May MP, Jeremy Hunt, UK Parliament

Help Fund the ONLY Treatment for Children with FATAL Batten Disease

Batten Disease is a neurodegenerative life limiting condition. Children appear healthy at birth and symptoms for CLN2 Batten Disease begin between 3-4 years old. Children lose the ability to walk, talk and eat. They lose their vision completely and develop childhood dementia as well as uncontrollable seizures. The disease progresses rapidly with children becoming completely dependent on parents/carers by the ages of 5-6 years old. The life expectancy of a child with CLN2 Batten Disease is between 6 and 12 years old. However there is hope, a select number of children in the UK have been receiving a drug called Cerliponase alfa. This drug has shown to slow down the progression of the disease and in some children even stabilise it.  Children who are NOT receiving this drug will die whilst children who ARE receiving the drug are still able to walk and talk, and enjoy life with their families. This treatment is currently available to patients in Europe. NICE and NHS England have made the decision not to recommend this treatment be available children in the UK with CLN2 disease. Lucy Carroll who has 2 children receiving treatment says: 'We are extremely disappointed and utterly heartbroken with this decision. We are witnessing first hand the positive impact the treatment is having on both of our children. The process in which these decisions are being made is painfully slow, whilst children in the UK are left suffering yet other countries are providing treatment. We now need your help and support to allow us to be the voice for all children with CNL2 Batten Disease and get this decision changed.'  Gail Rich, a parent of 2 girls receiving treatment says: We cannot express how devastated we are by the news that the NICE committee have made the unthinkable decision not to recommend this treatment be available children in this country on the NHS. This decision is cruel, unjust & simply wrong. This treatment works. It has been proved to work. All of the amazing children currently receiving treatment around the world are living proof that this treatment works. We only have to look at our two daughters to see that this treatment works. How can they possibly say no? Every child deserves a chance. This treatment should be available to children in this country. Knowing it is now a recognised treatment in other countries across the world proves they are wrong & would be wrong to deny our children in this country, access to something that has been proven to work. Please sign this petition Together we WILL make a difference.

Batten Disease Family Association
88,388 supporters
Update posted 2 weeks ago

Petition to Rt Hon Jeremy Hunt Secretary of State for Health

Let’s All Opt In to Introduce the Opt Out Organ & Tissue Donation System

My name is Lucy Ryan and was incredibly lucky to receive a life saving heart transplant 24 years ago aged 2 years-old.  I am also fortunate enough to have a lot of fellow transplantees as friends due to someone somewhere being generous, selfless and brave enough to donate either their own organs & tissue, or those of a relative at an unimaginably difficult time.  But heartbreakingly I have lost friends along the way who waited for a transplant they never received. Imagine waiting to live, being on the transplant list unable to lead a normal life just waiting in hope for that bittersweet call for months even years!  96% of the UK population have expressed a desire to receive an organ donation. If they needed one yet only 36% are signed up to the current Opt-in system.  (The Opt-in system is where to become an organ and/or tissue donor those of us living in Scotland, Ireland and England must make the effort to sign up to the organ donor register.)  Yet despite it being so easy to sign-up e.g. spending 2 minutes online, many of us still have not “opted-in”! Even with all the fantastic work charities and organisations do to raise awareness.  I know from my own experience it is often something we keep meaning to do, but it never quite reaches the top of the “To-do” list! In the past few years I have been becoming increasingly frustrated with the growing organ donation crisis and  decided it was about time to do something.  I researched the best way to try to improve the situation settled on the introduction of the “Soft Opt-out” system in all of the UK (alike Wales did in December 2015) is what we need (Scotland & Northern Ireland have already proposed the same idea).  Once the system is reformed we will wonder why on earth it took us so long to do it like banning smoking in restaurants! The Soft Opt-Out system would mean would everyone automatically becomes an organ donor as an adult unless they decide to “opt-out”. Relatives would be consulted at the time of death, and to see if their loved one ever ever expressed a wish to opt out but for some reason hadn’t. I believe the majority of those whom do not wish to become organ donors are far more likely to make the effort to opt out, than the 60% of the current UK population who would like to become organ donors but have not yet "opted-in". By becoming a donor you can save almost as many lives as cats apparently have. 3 people die everyday waiting for a transplant—Let’s all Opt in to Opt out and end the donor crisis! Thank you for taking the time to consider my proposal and hopefully sign up. With your support we can make this happen. Yours Sincerely Lucy Ryan

Lucy Ryan
3,926 supporters