Petition to Jeremy Hunt, Jon Ashworth, Amber Rudd MP
Please save my son Alfie by allowing him to legally use medical cannabis!
My six year old son Alfie has a very rare genetic epilepsy condition called PCDH19. It causes clusters of seizures which are unresponsive to almost any medications. He can have up to 30 violent seizures a day. It’s so severe that he had 3000 seizures in one year and ended up in hospital 48 times.The only legal medication in the UK that helps are steroids. But they are toxic to the body, especially when used regularly. If we continue giving them to Alfie there is a high likelihood he will develop psychosis or his organs will fail. Last year, in desperation, we travelled to Holland where doctors treated him with cannabis oil. Miraculously, with a dose of three drops a day, Alfie didn’t have a seizure for 27 days. He's only had 2 seizures in the last two months. Dutch doctors say that cannabis oil could get his seizures down from 30 a day to twenty a year. My baby went from a death sentence, to the prospect of a normal life, with school, friends and fun. But that prospect could be taken away now we are back in the UK because here the use of medical cannabis is illegal. I don’t want to have to break the law so I am pleading with the UK Government to make an exception for Alfie and grant his doctor license to prescribe medical cannabis so Alfie can live life carefree, without constant seizures and ploughing of steroids. Making an exception for Alfie doesn't have to open the floodgates - Alfie is the only boy in the UK that has this condition. We are working with End Our Pain (https://endourpain.org/ to get a better life for Alfie and hope this will lead to help for other children who need to try this medication. To legalise the use of medical cannabis would enable the quality and consistency of products to be properly controlled, would create a new industry and more jobs, raise taxes, lower crime rates and result in fewer people struggling in hospitals to be well, or being preyed on by unscrupulous online sellers. We assess the saving to the NHS from Alfie’s case alone to be over £100,000 and up to 150 paediatric bed days. It’s a no-brainer! Getting Alfie treatment could be the first step to making medical cannabis accessible to others in need. We urgently need the public to make noise to make that happen. Alfie has been through more than most people go through in a lifetime. He deserves to have a wonderful life full of joy. I just want Amber Rudd and Jeremy Hunt to understand this isn’t about the wholesale legalisation of Cannabis. This is about weekly trips to A&E, watching my son have seizures, watching him turn purple, and praying that he lives to see another day. Please sign and share this petition and help me make our family’s only wish come true. And please like our Facebook page Alfie's Hope for all updates on Alfie's journey. Thank you x
Petition to UK Parliament
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!
Petition to home office, Theresa May MP, Amber Rudd MP
Cancer treatment for Albert Thompson, who has lived in UK for 44 years, denied NHS care.
'It's like I'm being left to die' UPDATE - You are also welcome to donate to Praxis, the charity supporting him directly: http://www.praxis.org.uk/donate-now-page-25.html Londoner Albert Thompson, in UK for 44 years, was told he must pay for care after Home Office dispute. When Albert Thompson went for his first radiotherapy session for prostate cancer in November he says he was surprised to be taken aside by a hospital administrator and told that unless he could produce a British passport he would be charged £54,000 for the treatment. Thompson has lived in London for 44 years, having arrived from Jamaica as a teenager, and although he has worked as a mechanic and paid taxes for more than three decades, the Home Office is disputing his eligibility to remain. The 63-year-old, who asked for his real name not to be printed on legal advice, is another victim of an unfolding scandal around the treatment by the Home Office of a group of people who arrived in the UK as children from Commonwealth countries. This cohort grew up believing themselves to be British, only to discover in a rapidly hardening immigration climate that they need documentary proof of their right to be here, which many do not have. Thompson’s mother moved from Jamaica to the UK in the 1960s to work as a nurse, dedicating much of her working life to the health system. He married in Britain, and has two grown up sons and a 15-year-old daughter. Thompson was employed full time as a mechanic and later did MOT work, until 2008 when he was diagnosed with the blood cancer lymphoma; since then he has been too ill to work. His problems with the Home Office became acute last July when he was evicted from council-owned accommodation because officials questioned whether he was eligible. The Home Office said it could find no record of him in its files and he was forced to sleep on the streets, until the homelessness charity St Mungo’s housed him. “I kept myself away from other people, sleeping around the back of shops. It was a bit frightening when you’re not used to it,” he said. Last October the Department of Health published new guidance highlighting NHS trusts’ legal responsibility for charging overseas visitors. A letter from the hospital stated unless Thompson could provide documents to prove that he was “ordinarily resident and legally entitled to live in the UK”, he would be required to pay for treatment “in full, in advance”. Lawyers at the law firm Duncan Lewis are trying to help but because there is no legal aid for this kind of case, can only continue if exceptional funding is raised. His lawyer, Jeremy Bloom, said the firm had been contacted by a number of people encountering similar problems. “The Home Office routinely fails to recognise people’s permission to be here, regardless of whether a person has been living in the UK, registered with numerous other government departments, paying taxes and contributing to society for decades,” he said. “This case is particularly serious because of his urgent health needs, and the time that it will take for him to regularise his status here through making the appropriate immigration application. Meanwhile, he is being denied potentially life-saving treatment.” Thompson’s case has been taken up by the migration charity Praxis, based in east London. It has seen a sharp rise in cases involving retirement-age Commonwealth citizens who have lived continuously in the UK for about 50 years, but are facing questions about their immigration status, resulting in evictions, refusal of benefits and dismissal from work. The numbers are galloping up – these are people who have paid taxes and contributed all their adult lives who are suddenly being stopped and asked: on what basis are you here?” said Bethan Lant of a Praxis. “Their only crime is that they have not filled in a form from the Home Office.” There is growing awareness of the problems faced by long-term UK residents who do not have the paperwork to prove they are in the country legally. Last year, Paulette Wilson, 61, a cook who had worked in the House of Commons, narrowly avoided deportation to Jamaica, where she was born. Thompson’s situation is not unique. Lawyers at Southwark Law Centre are fighting a similar case involving a man who arrived as a child more than 40 years ago from a Caribbean country who has also been told that he is not eligible for cancer treatment on the NHS. As a result of the Home Office decision to question his immigration status, he is living on local authority destitution support – having paid tax and national insurance for decades. After a legal challenge, he has received some treatment but he has been told he must pay for it. Thompson is feeling unwell and is constantly worrying about his condition, his treatment and his Home Office status. “I’ve got no money. Since I stopped work when I got ill I’ve been living from day to day,” he said. “I’m very angry with the government. I’m here legally but they’re asking me to prove I’m British.” Albert Thompson and others in his position need our support to prevent them being denied their rights and status as British citizens. One whose parents came here for work, have been raised here and worked and paid taxes. Who belong here. Please sign this petition to show your support and put pressure on the Home Office so Albert can get the treatment he needs and in doing so support other facing similar situations. (Photo: Jill Mead/The Guardian)
Petition to Ian Hudson, Jeremy Hunt, Dr. Sarah Wollaston
Please make our life saving injectable vitamin B12 (hydroxocobalamin) available over the counter.
Your signature on this petition will help us fight for our right to health. UK sufferers of B12 deficiency and PA are routinely resticted or denied access to the life saving 55p vitamin B12 injections they desperately need. Making our life saving, harmless, B12 injections available OTC will transform lives! I created www.b12deficiency.info to help patients find key information on the condition. The majority of UK patients suffering from Vitamin B12 deficiency and auto immune pernicious anaemia (PA), are restricted to a ‘maintenance dose’ of just four B12 (hydroxocobalamin) injections per year. This is tragically under treating a serious and very common deficiency - and this is only if patients are fortunate enough to achieve a diagnosis. This regime is based on saving cash and not care for patients - there is no clinical evidence for this frequency. B12 deficiency affects both sexes and all ages, but the general misconception is that it only affects women over 60. Many of us inherit this condition and in turn, so do our children. Hundreds of thousands of UK citizens are B12 deficient, there are many symptoms, many causes and it is commonly misdiagnosed. Vitamin B12 has no known toxicity, in fact it is used in huge quantities as a treatment for cyanide poisoning. You cannot overdose on B12 injections. This deficiency can occur for many reasons, these include - inborn errors, parasites, and the use of many common drugs including, metformin and Omeprazole. B12 deficiency affects all body systems, from our brains to the tips of our toes. The protective coating for our nerves is stripped away and our brains start to shrink from a lack and a restriction of a 55 pence B12 injection. Many patients are misdiagnosed with conditions such as Alzheimer's, dementia, Bipolar, Multiple sclerosis, Chronic fatigue syndrome, autism, ADHD, fibromyalgia to name a few. Countless sufferers remain undiagnosed due to flawed diagnostic tests, a lack of screening and health professionals lack of knowledge of the condition. Removing the classification of POM (Prescription Only Medicine) from our injectable B12 would have a profoundly positive affect on sufferers, their families and society as a whole. Many countries all over the world including EU nations - France, Germany and Spain allow their citizens to buy this essential vitamin over the counter. Please give us the chance for optimum healing by allowing us unrestricted access to the amount of B12 our individual bodies need. We are all at different levels of damage and numerous symptoms are reversible with the right level of treatment if diagnosis is early enough. Each patient is only too aware of when they need another injection but these pleas for help fall on deaf ears. Desperate patients turn to online pharmacies to buy this essential vitamin due to a complete inability to access treatment from their doctors. Many doctors routinely fail to understand the reality of this debilitating condition. UK pharmacists train to give injections, perhaps they can help to teach us or administer? These injections are vital to people who cannot absorb this life saving vitamin from food. Vitamin B12 is food and we cannot live on just four meals per year. It is worth noting here that B12 deficient dogs are given weekly injections. The RDA for a non deficient patient is 2.5 mcg each day but those of us who cannot absorb B12 are expected to survive for 90 days at a time without it. This is a water soluble vitamin which our bodies cannot retain. It requires frequent replacement. Non deficient patients can freely access additional B12 whenever they need it from their body’s supply of stored B12. B12 deficient patients bodies, do not work in this way. B12 oral tablets will not repair our neurological damage, but frequent injections will. We are at the mercy of health professionals who are not educated adequately about B12 deficiency leaving many sufferers undiagnosed or indeed misdiagnosed. These same health professionals then follow outdated, restrictive, treatment guidelines which assume each sufferer is the same. B12 deficient patients are commonly labelled as lazy, depressed, hypochondriacs and yet we are routinely denied the vitamin we desperately need to live. A recently published patient survey from the Pernicious anaemia Society, records that nearly two thirds of the 889 respondents were dissatisfied with current treatment and that 14% of patients waited more than ten years for a correct diagnosis. There are many doctors attempting to treat our symptoms with antidepressants, but our B12 deficiency induced depression can dissapear completely with frequent regular administration of this non toxic, nerve repairing vitamin. Some of our doctors who do understand B12 deficiency and pernicious anaemia are reprimanded for prescribing B12 injections for desperately ill symptomatic patients who are ‘within range’ on flawed B12 serum tests. This under treatment renders those of us with this condition - amongst other things - seriously mentally impaired, experiencing debilitating pain, bed ridden, chronically fatigued, at high risk of stroke or heart attack, and unable to walk or to stay awake. Existing but not ‘living’ makes our lives a misery and our human rights are not being fulfilled. Ian Hudson CEO of MRHA you have an opportunity to rectify this. Our right to health is a fundamental part of our human rights but sadly the vast majority of B12 deficient patients are excluded. Some patients have successfully fought for the right to receive more frequent injections however most of us are denied this luxury. Most don't succeed in educating their doctors and many don't have the energy to fight, so continue to deteriorate steadily. 'The right to the enjoyment of the highest attainable standard of physical and mental health,’ is stated in the 1946 Constitution of the World Health Organization (WHO). The NHS Constitution 26th March 2013 states that the NHS 'has a duty to each and every individual that it serves and must respect their human rights.' I inherited B12 deficiency, I cannot absorb B12 from food and I will require injections for life and yet I am not allowed a repeat prescription for this vitamin. I was diagnosed in 2012 and I am passionate about raising awareness. I know people who have been sectioned due to this condition, who have been misdiagnosed with Parkinson's & Alzheimer’s and who have tried to take their own lives due to lack of adequate treatment. Please sign and share this petition. You will know someone affected by B12 deficiency. All B12 deficient patients want is to be able to be in charge of their own healing. To be allowed the same rights as a diabetic, to be able to buy OTC and self inject this life saving vitamin, as and when they need. Thank you. Tracey Witty www.b12deficiency.info http://b12deficiencyblog.wordpress.com/2013/11/01/imagine-being-sectioned-for-a-vitamin-b12-deficiency/ http://b12deficiency.info/letters.html http://b12deficiency.info/what-to-do-next.html http://www.youtube.com/watch?v=BvEizypoyO0 Patient survey http://www.britishjournalofnursing.com/cgi-bin/go.pl/library/article.html?uid=104134;article=BJN_23_7_376_381 False normal B12 results and the risk of neurological damage UK NEQAS B12 Alert Professor David Smith and his team have previously shown that high levels of homocysteine and low levels of vitamin B12 were both related to a faster shrinkage of the whole brain (global atrophy). http://www.mrc.ac.uk/news/news/b-vitamins-can-slow-the-alzheimere28099s-disease-related-shrinkage-of-the-brain/ Nice Guidelines http://cks.nice.org.uk/anaemia-b12-and-folate deficiency#!scenariorecommendation:4 Vitamin B12 safety - High dose Vitamin B12 shown to be safe for more than 50 yearshttp://stichtingb12tekort.nl/wetenschap/stichting-b12-tekort-artikelen/english/treatment-with-high-dose-vitamin-b12-been-shown-to-be-safe-for-more-than-50-years/
Petition to Theresa May MP, The Prime Minister Rt Hon Theresa May MP, Michael Gove MP
BAN all crop spraying of poisonous pesticides near our homes, schools and playgrounds!
I have lived in the locality of pesticide sprayed crop fields for over 30 years and have suffered both acute and chronic adverse health effects from exposure to the innumerable mixtures of pesticides sprayed on crops near to my home. In 2001, I started my campaign, the UK Pesticides Campaign, to expose the fundamental failure to protect rural residents from agricultural pesticides. Many millions of rural residents who live near conventionally farmed cropland have absolutely no protection at all from any of the poisonous chemicals that are permitted under Government policy to be sprayed on crop fields all over the UK. In fact, there is actually no protection for rural residents and communities in the majority of other countries around the world either! This is due to the fact that there are fundamental failings in the way that pesticides have been approved here in the UK, and across Europe, as well as on a global scale. As to date, the official method produced by regulators in the UK (and then subsequently used by other regulators around the world) for assessing the risks to people from crop spraying - and under which many thousands of pesticide products have been approved - has been based on the model of a short term 'bystander', occasionally exposed, for just a few minutes, and to just one individual pesticide at any time. Yet this clearly does not address the real life exposure of people who actually live in sprayed areas, as exposure for residents is both repeated acute and chronic exposures over the long-term, it is cumulative, and is to innumerable mixtures and cocktails of pesticides used on crops, throughout every year. (NB. There are approx. 2,000 pesticide products currently approved for agricultural use in the UK alone). This means that pesticides have been approved for decades without first assessing the health risks for rural residents and communities who actually live in crop sprayed areas which obviously includes babies, children, pregnant women, the elderly, and people already ill and/or disabled. This situation is, without a doubt, a catastrophic public health and safety failure on a truly scandalous scale. EU law is clear that it must be established before a pesticide can be approved for use, on the basis of all the required risk assessments, that there will be no immediate or delayed harmful effect on human health. The absence of any such risk assessment for the real life exposure of rural residents and communities means that no pesticide should ever have been approved for use in the first place for spraying in the locality of residents' homes, schools, children's playgrounds, amongst other such areas. Whilst operators will be in filtered cabs and/or have personal protective equipment when using pesticides, rural residents have no protection at all. Instead millions of rural citizens have been put in a massive guinea pig-style experiment and for which many of us residents have had to suffer the serious, devastating - and in some cases fatal - consequences. Throughout my 15 year campaign I have continued to receive reports of both acute health effects, as well as chronic long-term effects, illnesses and diseases, from rural residents and communities (and not only from here in the UK, but also from many other countries around the world). There are so many more horrific stories of people being poisoned from crop spraying near to their homes, and many involve children. The acute effects reported are the same types of acute adverse health effects that are recorded in the UK Government's very own monitoring system. They include, amongst other acute effects: chemical burns (including to the eyes and skin); rashes and blistering; throat irritation (eg. sore and painful throats); damaged vocal chords; sinus pain; respiratory irritation; difficulty swallowing and chest discomfort; coughing; breathing problems; shortness of breath; asthma attacks; headaches, dizziness, nausea; vomiting; stomach pains; flu-type illnesses; and aching joints. The most common chronic long-term effects, illnesses and diseases reported to my campaign from residents living in the locality of crop sprayed fields include neurological conditions such as Parkinson's disease, Motor Neurone Disease, and neurological damage, as well as various cancers, especially those of the breast and brain, leukaemia, non-Hodgkins lymphoma, amongst many other chronic conditions. It is now beyond dispute that pesticides can cause a wide range of both acute, and chronic, adverse effects on human health. This includes irreversible and permanent chronic effects, illnesses and diseases. The pesticide manufacturers product data sheets themselves can carry various warnings such as "Very toxic by inhalation," "Do not breathe spray; fumes; vapour," "Risk of serious damage to eyes," "Harmful, possible risk of irreversible effects through inhalation," and even "May be fatal if inhaled." High quality, peer-reviewed scientific studies and reviews have concluded that long-term exposure to pesticides can disturb the function of different systems in the body, including nervous, endocrine, immune, reproductive, renal, cardiovascular, and respiratory systems. Such studies have concluded that exposure to pesticides is associated with some of the major chronic health conditions affecting public health in the 21st century. The economic costs of the health conditions that pesticides can cause are massive. Obviously it goes without saying that the personal and human costs to those of us suffering chronic diseases and damage, and the impacts on all those around us, cannot be calculated in financial terms. I myself have also known a number of residents lose their lives, or the lives of their husbands or wives, sons or daughters. It has been heart breaking to watch this happening, especially knowing that if pesticides were not sprayed in the locality of residents' homes then such health conditions would have been totally preventable. Many more residents will inevitably also succumb if the Government continues to fail to stop the spraying of these toxic chemicals in the locality of residents' homes. The first duty of any Government is supposed to be to protect its citizens, especially those most vulnerable, rather than the multi-billion pound pesticides industry and big business. Therefore the UK Government must now finally act to put an end to the scandalous failure to protect rural communities from the cocktails of poisons sprayed on crops. The Government must as a matter of urgency secure the protection of people in the countryside by banning the crop spraying and use of any pesticides and other agrochemicals in the locality of our homes, schools, children's playgrounds and other such areas (eg. nurseries, hospitals etc.) This must be in substantial distances, as small buffer zones won't protect anyone considering how far pesticides are known to travel. For example, scientific studies have found pesticides miles away from where they were originally applied and calculated health risks for residents and communities living within those distances. It is an absolute no brainer that no pesticides should be sprayed where people live and breathe, especially babies, young children, pregnant women, people already ill and/or disabled, and the elderly. A complete paradigm shift is needed to move away from the use of pesticides altogether to the adoption of non-chemical farming methods, as it goes without saying that no toxic chemicals that can harm the health of humans, (as well as other species such as bees, birds etc.) anywhere in the world, should be used to grow food. Enough is enough! This chemical warfare in the countryside has to stop for the protection of us rural citizens now, and also for all future generations! Please sign my petition to the Prime Minister to help stop this public health scandal. Thank you for your support.
Petition to BioMarin Pharmaceutical, Jeremy Corbyn MP, Donald Trump, Barack Obama, Michelle Obama, Nick Clegg MP, Boris Johnson MP, David Cameron MP, U.S. House of Representatives, NORML UK, Sir Richard Branson
LEGALISE THE CURE FOR CANCER! #KASABIAN'S LAW
I have a story to tell you about our very own superhero, Kasabian Newton-Smith & his extraordinary family. I actually know this family and of course Kasabian personally and can easily class them as friends. I met Kay (Kas's Mum) 9 yrs ago, when by chance she walked into my hair salon, instantly I saw that she was a friendly, happy, honest, & genuine person and we clicked straight away. I also classed her as a friend straight away! Kasabian wasn't born then but not long after he made a appearance. Even though Kay and I don't txt or speak everyday, nothing changes when we do actually get time! Kay is such a beautiful person, so kind hearted and never judges, she's always there for others, and always sees the best in people. When Kasabian was first diagnosed with Ewings Sarcoma when he was 2 years old, he was only given two weeks to live then! So, To save their child the Newton-Smith family and friends rallied round, to raise funds to pay for his treatment in America. I was asked if I would help out and it was a honour to do the first ever head shave on Kay herself in 2009. Kasabian has relentlessly battled his cancers for 7 years, had more chemotherapy sessions & radiotherapy sessions that a grown adult can cope with, and In total Kas had more than 900 procedures in the 7yrs of his battle. He lost his hair three times through the treatment & he's been in remission twice, Even through all of that Kasabian was just like his mum - So very Kind Hearted, Selfless and Very resilient! He set himself goals by raising money for other charities, and once he'd sets himself a target, you can bet you're life that he'll smash it! In 2015 sadly more cancers had invaded his body - simply just way too many, and he had received all the treatment that was/had been available, which ment that treatment options were nil.He was then heartbreakingly deemed as terminal - Devastating! But the fearless youngster decided to kick start the fundraising campaign for PACT charity and did himself a 5k walk in Hillsborough Park June 2015, raising a staggering amount! I was proudly at Kasabian's walk in Hillsborough Park last year, I also arranged a suprise "minion" & "Buzz Lightyear" to walk alongside! And I was really privileged but very saddened to help at the most recent fundraiser at the Wadsley bridge club shaving more heads Nov 2016 .(Actually raising funds for Kasabians funeral) Even though I only class myself as the local hairdresser I used to make regular out of hours trips to Kays to cut Kas's hair, as he knew that I wouldn't hurt him due to his scar on his head, which was a Complete Honour! I love the Newton-Smith family so much, I've been so fortunate and lucky enough to meet and know such a amazing phenomenon of a young man and family! But Unfortunately witnessed his life in full circle. I will never ever meet anyone like Kasabian in my lifetime again! Simply because - There is only ONE of Kas! Sadly Kasabian Newton-Smith passed away peacefully on Saturday 10th December 2016. It was his 9th Birthday on Thursday 15th December - his first Angel Birthday. A entire community are mourning the passing of a very brave & amazing little boy. 'KEEP SMILING YOU NEVER KNOW WHO YOUR INSPIRING '- Kas - Warrior/Legend End the bigotry and educate. We don't need to find a cure for cancer, we need to legalise it. #KASABIANSLAW #WARRIOR #LEGEND #1lastsmile4kasabian https://www.thestar.co.uk/news/your-say/is-this-their-best-work-1-8878891 What if I told you there were MULTIPLE CURES for CANCER but are suppressed because cancer is worth over £200 BILLION a year ... we don't need to find a cure for cancer, we need to legalise it! Cannabis HAS BEEN PROVEN to have many more benifits to 'OUR' HEALTH, INDUSTRY AND ECONOMY! "KEEP SMILING YOU NEVER KNOW WHO YOUR INSPIRING" - Kasabian Newton-Smith / Warrior & Legend #KASABIANSLAW #REVOLUTION
Petition to NICE
Dystonia needs to be recognised by all medical professions & occupational therapists
Dystonia is a neurological condition/illness/disability which cannot be cured, which affects 70,000 people across the UK any many more worldwide, and yet this is misdiagnosed or simply not picked up by many doctors. Dystonia is caused by incorrect signals between the brain and the muscles, and can cause muscles to spasm, tremor, to lock in a fixed positions and can be very painful. It can affect people at any age, and can affect just one part of the body, or muscles all across the body. The impact of getting Dystonia can be massive and totally life-changing, but still awareness remains shockingly low. I want Dystonia to be recognised and understood everywhere, starting with doctors or other healthcare professionals being able to recognise it and get people the diagnosis and treatment that they need. To help make sure this happens I would like the Secretary of State for health, Jeremy Hunt, to tell the National Institute for clinical excellence (NICE) to produce a guideline about Dystonia, so that across the health system it can be recognised and the right treatment and support made available. Already many people, including medics, have to "google" Dystonia to find out more about it. You can find out more here: www.dystonia.org.uk
Petition to Secretary of State for Health, UK Parliament
Change The Way Hospitals Investigate Serious Incidents
Overview Meet Jessica Rae Rudland; my daughter described as a ♥ Social Butterfly ♥ by her friends. Very intelligent, bright and bubbly and loves all animals. On Sunday the 2nd August 2015 our beautiful daughter visited the local A & E Department at The Ipswich Hospital NHS Trust. She was, short of breath, and had a persistent cough. There was also a prominent bulging vein on the right side of her neck that looked to be racing. See Jessica's Story (website) See Jessica's Journey on her Facebook Page 15 Days PostpartumShe had given birth to our first grandchild 15 days earlier, so while she felt fine in herself, to be on the safe side in case of a postnatal infection or pe which we had thought about, we felt she should attend. Jessica skipped jokingly with her Mother across the hospital car park, it was 11:48 pm on a Sunday night. Five hours later with an unfortunate misdiagnosis and no clear treatment plan, the on-call Consultant Cardiologist was called. I remain mystified by the GMC's latest ruling on the #BawaGarba case as it highlights the huge inconsistencies in the GMC Investigation Process. Particularly when Junior Doctors are left to make emergency decisions without senior support, urgent patient review or attendance. I am human, I do care, this is not a witchhuntAs a member of the public, a parent who has enormous respect for doctors and nurses, concerns and questions raised after a serious incident where severe harm or death has occurred are met with denials, obstruction and no respect for the duty of candour. I hope one day this can change, there is much discussion online, especially Twitter all about #patientsafety and many organisations profess to support 'openness and transparency' when things go wrong. My experience is they do not, I am no longer in the minority either. Many people share the same experience I have endured. Jessica's treatment and management were remotely managed, even though lengthy delays, phone discussion and extensive treatment meant she was perilously close to what was later described as 'peri arrest'. Jessica finally went into cardiac arrest in resus. Jessica was in a coma for three and half weeks, had Sepsis and multiple organ failures, dialysis and subsequently, she got transferred to Papworth Hospital, but she suffered an anoxic hypoxic brain injury. Help promote a specific escalation processI am hoping this petition may help promote a specific escalation process (worldwide) that I feel should be in place for pregnant and recently-pregnant patients presenting as an emergency. This was a recommendation made by Dr Pam Chrispin after the fourth (SI) investigation report. This report should have identified 'the multiple systemic failures within this Trust, that were later identified' but it did not. The impact on our family was catastrophic as we rallied to care for her newborn son who is now two and it's been life-changing for everyone involved, not least of all Jessica. The SIRI Process (SIRI) V1With this in mind, the Ipswich Hospital launched a SIRI (Serious Incident Requiring Investigation) to determine how this had happened. Currently, most NHS SIRI's are conducted internally by members of the same hospital and investigate their work colleagues. ‘The lack of escalation to senior colleagues at an early stage, or to contact specialist advice, is concerning in retrospect. There seems to have been a failure by some clinicians to recognise the potential for the patient to deteriorate suddenly, and in those who did recognise it, this was not communicated. The practice of leaving a nurse during her preceptorship period caring for a complex patient after anaesthesia without apparently adequate supervision is also concerning. There also seems to have been a culture of poor documentation and lack of care relating to making and keeping notes.’ The changes we proposeSIRI's must never be conducted internally, by colleagues or anyone who has a conflict of interest with the NHS Trust involved. As in maternity deaths, there is hope new laws will force trusts to independently investigate serious incidents in the future. I hope this will be enforced. I have collated over 64,000 words from all the meetings held with staff members from The Ipswich Hospital NHS Trust which have been transcribed into text documents. All accompanying audio recordings have been retained, should there be any confusion about the contextual information within this petition.