We demand Alder Hey to release Alfie Evans to a hospital of his parents' choice.
Alfie Evans is at Alder Hey Hospital in the PICU. He was born in May 2016 and has been hospitalised continuously since December 2016, dealing with chronic seizures of an undiagnosed disorder. Having given up on him as early as February 2017, and refusing to do a standard life-enhancing tracheostomy, the hospital has applied to the High Court to remove parental rights and withdraw ventilation to end Alfie’s life. Alfie was born healthy and on time. We were so happy to have him with us going home, our beautiful boy. He grew and fed well, but was exceptionally sleepy and didn't meet milestones. After a couple of weeks we noticed Alfie wasn't doing things he should be, like lifting his head up, grabbing his dummy, eating his hands, etc. We also noticed he was doing a jerking movement with his hands, arms and legs, and his eyes would roll up. Alfie often had his hands clenched into a fist. We took him to doctors three times, who said he was lazy and a late developer. Months went by and Alfie went backward instead of forwards. He started making more jerking movements and wasn't himself at all. Finally Alfie became agitated, crying inconsolably. Then Alfie got a chest infection and landed in the hospital. The infection led him to have a myoclonic jerking spasm, and Alfie struggled to breathe. This is when he was first put on life support, the worst nights of our lives. They told us in January 2016 that Alfie wasn't going to make it, so we had him christened. We thought we were going to lose our son and our hearts were desperate. But Alfie had other ideas, he managed to beat the infection and start breathing on his own again. He was moving and trying to open his eyes. Unfortunately, Alfie caught another infection and went back on the ventilator. Time and time again, despite not being diagnosed or treated for any suspected underlying disease, his seizures being somewhat controlled by a heavy cocktail of sedating drugs, Alfie has come back over and over from every infection and challenge. The hospital claims that Alfie is “insensate” and unaware of any stimulus or irritation, which is proven wrong in hundreds of videos, against the odds of a heavy cocktail of anti-seizure drugs with sedative effect. Daily, Alfie moves, stretches, yawns, responding to tickling and noise and cuddling. And yet even with all this, with loving parents (we are only 20 years old) who persevere through great strain and leave no stone unturned for Alfie, with support around the world, Alder Hey wants to turn his life support off. We have found another European hospital willing to help Alfie move forward, get a tracheostomy and PEG tube and get off heavy sedation, and to try to diagnose and treat him. We’ve been told several times by outside doctors that Alfie can even eventually be able to go home with a tracheostomy and direct stomach tube (PEG). Yet Alder Hey keeps moving the goalposts. They have gone from telling us they would allow transfer if a hospital was found, and putting us through a long process of proving our option was viable, to admitting they would not allow any such transfer. The pressure by the doctors to end Alfie's life has been unrelenting. Now they have resorted to legal force, to remove parental rights and end Alfie's life, going to court behind our backs when we were still willing to go through mediation to find a positive solution. We are relieved that after significant pressure was exerted by our legal team, the hospital backtracked and agreed to the fair mediation they denied us before going to court.Many people have seen Alfie's determination and strength as he battles through every single thing that is thrown at him. Alfie is a beautiful boy, growing big and solid, who is showing every possible sign that he could to tell us that he wants to get better and that he is still here to fight and live his life with whatever help we can give him. Doctors can’t explain away the signs Alfie gives of fighting on. Disabled and sick children deserve care, not a hastened death. We Alfie’s parents have the right and responsibility to make decisions to save him and move him to a hospital who will honour those decisions. Give Alfie his rightful chance at life!
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 aged 7 & 8 years old who are receiving treatment are still able to walk and talk, whereas those who do not receive treatment will lose these skills around 5 years old. . This treatment is currently available to patients in Europe but is not currently funded by the NHS in the UK. The drug is currently going through the NICE process and currently NICE and NHS England have made the decision not to recommend this treatment be available children in the UK with CLN2 disease. There are currently 4 children in the UK who have no access to treatment and there are 10 children who could potentially be left without treatment if the treatment is not recommended by NICE. 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.
Ban Nuts and Nut Products from Airlines
Aim: to ban the sale and use of nut and nut products (such as nut cooking oil) in food offerings, and ALSO to give air stewards the right, under law or policy, to inform a passenger with externally purchased nuts that they are not at liberty to consume them during flight. My Cousin, and Julie's niece and Goddaughter, Amy May Shead is a 29-year-old woman who was left severely brain injured after a catastrophic allergic reaction to one mouthful of food containing nut-products, while on holiday in Budapest. While this tragic incident, which has left Amy unable to walk, talk or see, did not occur on an airline, The Amy May Trust, the organisation raising vital funds for Amy's continual medical care and rehabilitation are raising awareness of the dangers of nuts and nut products to other nut allergy sufferers. Airlines are a confined space and a unique environment compared to all other modes of transportation. Unlike other forms of both private and public transport, or open spaces (all of which can be fatal to a nut allergy sufferer), an airline is an airtight tube within which the ventilation system can cause serious consequences to passengers who may be affected by contaminated air. Equally, if a reaction takes place onboard, the patient will require urgent and time-sensitive medical care, often within moments of the reaction taking place, even with personal medication such as an EpiPen, reaching a hospital within the required time is an unfeasible solution when thousands of feet in the air. Off the back of UK national exposure of Amy's tragic story, The Amy May Trust are petitioning to remove all nuts from airlines. While we understand the small comforts of travelling, such as a snack with your first-holiday drink onboard, we also realise the seriousness of many allergies, of which nuts pose a life or death danger, which is why we believe nuts and nut products should be banned from this unique mode of transport. We also appreciate the vast majority of airlines handle a passenger with a nut allergy extremely well, yet a blanket ban and the right for an air steward to inform a passenger with externally purchased nuts that they are not at liberty to eat them while onboard, will dramatically reduce the risk to both the sufferer and the airline. There are many alternative snacks to offer onboard a flight, but a nut allergy sufferer has only one life.
Make animal cruelty illegal in China.
China is one of if not the worst country when it comes to animal cruelty, each year thousands of animals are brutally killed and in front of each other. Did you know regularly in China dogs are stuffed into small cages before being hanged up by their paws and skinned alive, this happens in front of other dogs and those dogs see what's going to happen to them and they start barking and wailing in fear and for what so some rich people can wear fur clothing? This has to stop every animal can feel pain people need to stop thinking that because they can't speak they can't feel either and that means we control them but we don't! Animals were here first this is their world not ours we need to respect them! In the photo attached to this petition you can see a dog very much still alive having a leg sawn off and there's more to come for that terrified dog and many other animals. Pets are actually stolen off of the street, taken from their loving homes and killed in the most painful ways possible. I am absolutely disgraced to be human if that's what other humans will do for no good reason. Some of us clearly have no humanity in us if we can do this to poor defenceless animals or just sit back and pretend it's not happening because it is happening... right now! So please be the right kind of human and have humanity, sign the petition do these animals good and pass it on so we have a greater chance of stopping this. Please help them, because they need you to care.
Repeal the government decision to exclude animal sentience in the EU Withdrawal Bill
UPDATE: Michael Gove has promised to make “any necessary changes” to UK law to recognize that animals can feel pain, however we can't trust that we will get the animal rights that this country wants until something is in law. We need to keep up the pressure on the Government to ensure animal sentience is put into law. Under EU law all animals are considered sentient (meaning they are beings that feel pain). This law is there to protect the welfare of animals. MP Caroline Lucas had submitted an amendment clause (NC30) to the EU (Withdrawal) Bill, which sought to transfer the EU Protocol on animal sentience into UK law, so animals continue to be recognised as sentient beings under domestic law. Not allowing this amendment could see animal welfare go backwards instead of forwards allowing unethical exploitation of animals for hunting, battery farming and inhumane slaughtering for food.It flies in the face of commonly held scientific belief that animals do feel pain and have emotions. This is not a matter of left or right wing politics it's about protecting animal rights and coming together to ensure that animals maintain sentient status in UK law, to protect animal welfare. As Ben Fogle said "dogs are much smarter and more emotional than politicians believe them to be." The UK is still among the highest animal testing nations on the planet with 3.9 million testing procedures carried out here in 2016. Regardless of what has been claimed about how good our animal laws are we are ranked the 7th highest animal testing nation. I do not trust that the animal welfare we are petitioning for will be delivered by our government without the EU Protocol on animal sentience as a basis for improving animal welfare laws moving forwards. "There can only be one reason to deny animal sentient status, and that is to exploit them"http://www.independent.co.uk/voices/tory-mps-animal-rights-eu-feel-pain-fake-news-fox-hunting-conservatives-guido-fawkes-a8072046.html
Provide permanent shelter and housing for Rough Sleepers
More than 9,000 people woke up this Christmas on the streets, in cars, on trains, on buses and in tents. Nearly every day we hear of another Rough Sleeper that has died before their time, in most cases their situation contributes to their death. If we don`t act this year, this situation will get worse. It`s time to make Rough Sleeping a thing of the past in the UK. IF YOU DON`T THINK THIS CAN HAPPEN TO YOU, THINK AGAIN... https://www.channel4.com/news/in-work-but-on-the-streets http://www.theargus.co.uk/News/15795836.17_homeless_people_have_died_in_Brighton_in_2017_____how_many_more_must_suffer_/ http://metro.co.uk/2017/12/19/homeless-man-froze-death-outside-bullring-shopping-centre-named-paul-williams-7170065/ http://metro.co.uk/2017/12/08/body-homeless-woman-found-doorway-aunt-died-7-years-ago-7144206/
Ban pony painting parties!
Pony painting parties are a disturbing trend popping up all over the UK. Imagine being tied up amidst shrieking laughter, unpredictable touching and having strangers smear your hair in paint. This is happening all over the country to horses right now and we need to take a stand and get pony painting parties banned. How would you feel about strangers smearing paint on your pet? Is this something we want to encourage in children? If left unchecked, this will only get worse. What will happen when a stressed horse kicks or bites a child? What if there are tragic fatalities? These parties are dangerous to both children and animals - and all just for a bit of money. The 2006 Animal Welfare Act says that owners have a positive duty of care towards their animals and a responsibility to prevent the animal from becoming distressed. Animals have ways of communicating distress - horses show stress signs through swishing, flared nostrils, raised tail, sweating and a raised heartbeat. These subtle signals are not obvious to families/children and could even be ignored by organisers who are prioritising profits. Animals do not want to be grabbed at, shrieked at or painted on for human's enjoyment. Sign my petition to take a stand today to get this unnecessary cruelty banned! #BanPonyPaintingParties
Petition for the release of Charlie Gard from Great Ormond Street Hospital's care.
What do we want? We the undersigned call on the Prime Minister to help release Charlie Gard from the care of Great Ormond Street Hospital so that he can undergo treatment in another hospital of his family’s choosing. On April 11th 2017 a high court judge ruled that Charlie’s parents be stripped of their parental rights and Charlie be refused all treatment. Charlie’s parents are running out of time with their baby, we feel strongly that Charlie should have a chance to live. He literally has nothing to lose but potentially a healthier, happier life to gain. With the help of over 200 thousand people from all over the world, Charlie’s parents have managed to raise over £1.3m so that their son can benefit from treatment. Why do we want it? Charlie Gard was born perfectly healthy on the 4th August 2016. He was admitted to hospital at 8 weeks old and was diagnosed with a devastating disease called Mitochondrial Depletion Syndrome. Charlie’s condition is caused by disruption in the mitochondria, the part of the cell that provides energy to his muscles, kidneys and brain. After seemingly endless research and speaking to doctors all over the world, Charlie’s parents found a doctor in the US who has been treating children with similar types of Mitochondrial Depletion Syndrome using something called Nucleoside Bypass Therapy. Nucleoside Bypass Therapy could potentially repair Charlie’s mtDNA and help it synthesize again by giving him the naturally occurring compounds that his body isn’t able to produce, it’s a non-harmful, non-invasive oral medication. Charlie Gard has been accepted by doctors in the US and with funds having been raised we now need permission to remove Charlie Gard from the care of Great Ormond Street Hospital where doctors want to move him on to palliative care. Charlie’s parents have spent over 3,000 hours at his bedside and know him better than anyone else. They are absolutely convinced he is not in pain. When he feels their presence, he opens his eyes as much as he can and they do not believe he is blind. High Court judge Mr Justice Francis ruled that in all ‘likelihood’ Charlie had suffered severe and irreversible brain damage and there was little hope the treatment could achieve ‘anything positive for him. We do not believe that ‘in all likelihood’ is a strong enough reason to sentence Charlie to death. Charlie’s parents know his sleep/wake cycle and can wake him up by tickling his feet and soothe him to sleep by stroking his head. If his parents thought there was absolutely no hope they would not be fighting. We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives starting with Charlie Gard.
This government must carry out a FULLY TRANSPARENT INVESTIGATION into the Grenfell tragedy
The investigation into the Grenfell tragedy must be FULLY TRANSPARENT and allow the MEANINGFUL PARTICIPATION of the affected residents, their families, and the surrounding community. The government cannot be allowed to cover up any uncomfortable revelations about negligence and poor planning of the Grenfell estate by the Tory-run Royal Borough of Kensington & Chelsea. The government cannot be permitted to protect itself or those who should be held accountable. The process must unearth the TRUE CAUSES of the fire for the public interest. Prevent the government from whitewashing the truth and from keeping the UK's planning and regulation laws in the dark ages any longer. Stand with the residents of Grenfell as well as the residents of the UK's other tower blocks and make sure this does not happen again.
Save our students. Make Mental Health First Aid a compulsory part of teacher training
In January 2018, I lost my younger brother, Sam, to suicide. He was just 15. While I sat on my bed that Sunday evening, little did I know that only a few metres away from me my brother was about to take his own life. I heard screams through the headphones and ran upstairs at 21:30. I carried out emergency resuscitation for almost half an hour before the mass of emergency services arrived. No one should ever have to experience the loss and confusion of losing someone to suicide and I hope that, with your help, this petition can save at least one family the awful pain I've had to and continue to face. As part of research into ways of helping young people suffering with mental health conditions in schools we found that staff are generally not equipped to deal with problems faced by some students as they don't have the knowledge to do so. The same would apply if we consider physical injuries, teachers without training wouldn't know what to do with or how to spot a concussion for example. Therefore, to protect the students, most schools train a number of staff in first aid and almost all have basic understanding of the practise. On the contrary, very little staff members, and in some cases, no staff, have mental health first aid training of any degree. That's why I'm calling on the government to train teachers in mental health first aid too. Mental health first aid would be a very cheap and easy to run session which outlines potential problems faced by students and offers guidance to staff on what to do immediately (i.e. don't ignore the student). It would also advise staff on who to contact about the student to start putting into place the support they need as quickly as possible. There are so many teachers who are capable of dealing with physical medical emergencies, it’s about time that the same can be said for dealing with mental crises as well. The government's current plan states that they want one mental health unit or specialist first aider per school. My argument is that most schools have a single specialist physical first aider as well as having a mass of teachers with knowledge of first aid. So if they could explian why it should be any different with respect to mental health, that would be great. I don't think an epicentre of help is the right way of dealing with this issue, instead we should use the philosophy that all my campaigns are built on, universal knowledge, universal acceptance and universal support. Making the training compulsory may seem excessive at first glance but we now live in an age where three students per class have a diagnosable mental health condition . There are over 200 schoolchildren lost to suicide every year . And the rates of depression and anxiety in young people have increased by 70% in the last 25 years . So, I wholeheartedly believe, this isn't an excessive measure to be taking, it's a desperate one. Please sign and share my petition. Visit our Instagram pages - @iambenwest and @team_walk2talk  mentalhealth.org  papyrus.org  thesamwestfoundation.org