631 petitions

Update posted 7 hours ago

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 ( 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

Hannah Deacon
395,658 supporters
Update posted 1 day ago

Petition to Theresa May MP

Reform PIP; invisible illnesses sufferers are NOT being treated fairly

(I have been taken off Job Seekers Allowance as even they agree I am too ill to work. This is the only benefit I HAVE EVER BEEN ALLOWED and I've been taken off after 3 months). Many people in the UK suffer from invisible illnesses such as fibromyalgia, complex regional pain syndrome (CRPS/RSD), depression, rheumatoid arthritis, chronic fatigue syndrome, borderline personality disorder; autism; just to name a few! The PIP system is failing so many people and rejecting them due to a lack of knowledge and experience. The forms are not written out with mental health or other invisible illnesses (with varying conditions) in mind. It is hard to explain a typical day as it varies constantly. I myself have been diagnosed with CRPS, fibromyalgia, chronic fatigue syndrome, Vitamin D deficiency, depression. I developed CRPS at the age of 23 and have to live with it for the rest of my life now. There are no medications out there to get rid of my pain. I am in pain every single day down the whole right side of my body. I developed repetitive strain injury at the age of 22 and because it was not treated correctly; I now have a condition that is incurable. I was doing an apprenticeship at the time of injury and wanted a career within an office. I have been told my career is over now and I need to look at alternative jobs. I have been declined from PIP for two years in a row. I am currently in the process of trying for the third year. I have been told I am not fit for work right now by a private neurologist AND an NHS neurologist. I am 25 and my life is that of an elderly person. I struggle to walk around shopping centres. My right arm and leg will give way sometimes and I cannot use them. I struggle to cook dinners and clean the house. Doing these tasks hurt me so much I have to spend the next day laying on the couch recovering. I do not go out far and never alone as I am scared my right leg will collapse. I believe the PIP system needs to invest more understanding and consideration when assessing someone with an invisible illness. Just giving people disability allowance isn't going to fix problems. Providing them with understanding psychologists and easier access to treatments such as physical therapy will help many. Allowing people to be able to pay for their own medication and not relying on their partner or family will make them feel a little more independence than what they currently feel at the moment. To be denied PIP is like you are being denied the chance to be independent. A lot of us feel like a burden to those who help look after us. A lot of is became ill all of a sudden; one day we can be working doing an 8 hour shift; then the next day we get hit with an illness that just destroys your soul gradually and gradually leaves you housebound most of the time. I have seen in the news that people have committed suicide after their disability allowance has been revoked. I have seen that people suffering with CRPS, chronic fatigue syndrome have committed suicide due to not receiving the correct treatment and not being able to cope mentally anymore. Please read my letter to Theresa May for more insight into myself as a living example of someone the government has failed. I am not ready to give up hope. I am not asking to be on benefits forever. I would love to get the support I need for a while to get back on my feet and to hopefully be fit enough to be able to cope with a part time job. I would like others; no matter what their illness is; to get the help that they need. We are all humans and we all feel pain. I am sure many other sufferers can agree when I say I would do anything to be healthy and get back into a full time job. My GP's have said I am classed as having a disability. They have admitted they are unsure on what to do with me. They have said there are so many people in my situation and that they cannot do anything about it as it is down to the government. THE PIP ASSESSORS OPINION SHOULD NOT OVER RULE THAT OF A GP'S, NEUROLOGIST ETC. CRPS affects my nervous and vascular system. The PIP assessor isn't going to know or understand how this affects me, so why should their opinion or verdict be chosen over a fully qualified neurologists? Thank you for taking the time to read this - Amanda        

Amanda Flannery
5,194 supporters
Update posted 1 day ago

Petition to Health, Jeremy Hunt, David Cameron MP, Jeremy Corbyn MP

Improve care to baby loss of under 24 weeks What do you class as a Miscarriage?

Improve care to baby loss of under 24 weeks Which would help by changing the terminology of the word Miscarriage, To recognise that when mums have to give birth to their baby's, and have a full birth. Acknowledge that they have indeed given birth a baby. The word Miscarriage is extremely insensitive in the 21st century, and no maternity leave is given to our parents to deal with this great loss. (Miscarriage in the UK is class up till 24 weeks of pregnancy. We want all our mums to be given the right care during this time too Currently, there are no guidelines in place to deal with 2nd-trimester losses and we call upon have these set up as a matter of urgency.  Take the time to Watch our Guess my Gestation video, our sleeping babies are of various gestations,  Guess My Gestation Video Did you guess the gestation right?  Do you think these are Miscarriages or babies?  USA & Australia recognise that babies at 20 weeks of gestation are indeed babies  To confirm this read the following;-  1. 2. 1. We want the UK, to call our babies, baby's rather than Miscarriage.   2. We really feel that the terminology here in the UK needs to come in line with other countries. 3. We want NICE & RCOG Guidelines written in place to ensure that proper care is given to our mums, to be the same as if a baby's born after 24weeks. To ensure a midwife is with mum throughout the labour, and that if any issues with the placenta to explain to the mum exactly what the procedure is, and what choices is available.  4 Allow mums and dads to decide if their babies come out crying if medical staff should intervene or not. Most hospitals will intervene at 23weeks dependent on weight, but parents are not being informed of these choices.   (One baby of 21 weeks gestation was saved, please visit Josiah page,   5. We want an explanation why the Maternity Review did not include mums who given birth to baby's of 24 weeks and under. We want NHS England to include this in their maternity review as pregnancy starts from the day you conceive. Our pregnant mums need protecting at all gestations to ensure every mum has the best chance of taking a healthy baby home, at the same time ensuring the care they receive if they do lose their baby is to the highest standard possible. We should not be ignoring these losses just because they are currently only class as miscarriages and not baby's!  Questions we are asking is the following,  1. What do you class as a miscarriage? 2. We love to know, what gestation do you class as Miscarriage? 3. Did you have a surviving 23 week gestation baby? if yes where are you based?  4.What changes would you like to see? We love to hear from everyone, Worldwide Thank You for Signing We need 100,000 signatures to gain change.  (We also raise awareness on PPROM, and have an ongoing petition to change the way PPROM is dealt with) Click here to follow our Petition Facebook page   Worldwide PPROM petition, UK PPROM petition: Sign UK PPROM petition here Find PPROM Awareness on Facebook.  Click to follow us on Twitter

Little Heartbeats Raising PPROM Awareness
5,729 supporters
Update posted 1 day ago

Petition to Theresa May MP, Jeremy Hunt, Mrs Theresa May & Dan Poulter, President Barack Obama

Treat PPROM as it states as Emergency - Saving Babies Lives

Simple words, we want all of our patients to be treated as a emergency and ensure all patients given the right diagnosis and management plan before being sent home.  If you watch our YOU Tube video, link is here: Our Awareness Video where all babies survived PPROM  all mums lost their waters before 24 weeks of pregnancy, all babies survived  Watch our YOU Tube video, interview with our mums who lose their babies Our awareness video where babies have not survived Many mums are losing babies not just under 24 weeks, but over 30 weeks, even at 36 weeks, current guidelines recommend delivery at 34 weeks due to the risk of chorioamnionitis but parents are not being informed of this, and are not involved with the decision making. Doctors are pushing past 34 weeks in hope this will avoid a neonatal visit. Problem we have is these mums are not always given a management plan and infections are being missed and mums are told every thing is ok, when it is NOT OK. Sadly in some of our cases, some mums can no longer have a baby. Had these mum's been induced 1 week or even days before, then these mums would be holding a healthy baby and not a empty box.  The ROCG Green–top Guideline No. 44 on Preterm Prelabour Rupture of Membranes recommend the following,  Delivery should be considered at 34 weeks of gestation. Where expectant management is considered beyond this gestation, women should be informed of the increased risk of chorioamnionitis and the decreased risk of respiratory problems in the neonate. Guidelines as stated here - click to read Personally we asked the Ombudsman to investigate our care, they told us they found mistakes in our care, but refused to carry out a investigation into why we were failed, since our complaint 5 years ago, more parents have lost their babies to PPROM / SRM / rupture of membranes at the same hospital trusts as ourselves. And we are having families throughout the country, both with angel and miracle babies, asking us why no one gave them any choices, to date all of our hard efforts to gaining change is being dismissed.  our webpage, Which is why we need you to sign and share...... This is what we want.... Follow PPROM ROCG Guidelines and inform their patients of their hospital policy on Preterm Pre-labour Rupture Of Membranes before 37 weeks of pregnancy, and consider the mental health of parents experiencing this. PPROM Awareness - Preterm Pre-labour Rupture of Membranes before 37 weeks of pregnancy occurs in 2% of pregnancies, is associated with 40 % of preterm deliveries and can lead to significant morbidity and mortality. Every day in the UK, a mother and baby’s voice is being ignored. The medical guidance on PPROM from the Royal College of Obstetricians and Gynaecologists is being ignored. A PPROM happens in the UK every day. Interventions are withheld until 24 weeks, and termination is regularly offered. Other countries extend human rights to babies at 20 weeks gestation with interventions earlier. In fact, a baby born at this stage of pregnancy in other countries, including the USA and Australia, will receive both a birth certificate and a death certificate.  We want: 1. All PPROM mothers to be allowed to extend their human rights to the life of their baby. 2. Parents to be informed about PPROM at their first pregnancy appointment and when they suspect PPROM. The mother’s human right to continue the pregnancy should not conflict with the viability of the baby, as babies can survive if interventions are given. (This means respecting the mothers wishes regardless of gestation)  3. Indications of PPROM to be treated as an A&E emergency with the guideline treatment applied promptly. 4. More research and money invested into pre-birth and PPROM to take the UK into line with other countries and to educate staff and patients on this life changing condition. 5. Staff to adapt a paramount attitude and respect the patient’s decision. 6. The patient’s symptoms to be noted correctly and at the time of the event. 7. To walk out of hospital knowing that everything possible was done and that the correct procedures were carried out, with patients receiving the correct, up to date information. 8. Treatment to be given before 24 weeks regardless of gestation; we know that medical interventions can protect against infection, and give unborn babies the best chance of survival, while no intervention leads to more losses. Currently it’s a postcode lottery, and often the ones given interventions are surviving. 9. To inform patients once about termination. If they wish to carry on the pregnancy, we want the best care to be given to enable the mother to carry on past 30 weeks of pregnancy. To respect people's beliefs and respect their decisions. 10. Our voices to be heard, and better care, and we want you to know that the mother's health, both physical and mental, should be taken into account. Many end up with PTSD due to poor care and being misinformed of their situation or to a lack of information. This PTSD is often missed, which leaves the mother with recurring nightmares of the ordeal, in which a lot of cases experienced poor care, and in some cases led to the death of the babies. We say this as patients who have either lost babies to PPROM or have given birth to surviving babies after PPROM. 11. More investment and research into this subject, and more training given on how to deal with complications. We do have some good consultants and midwifes throughout the UK, but they do not always receive training in this area. 12. All women who experience this to be informed about the labour process; in fact we want pregnant women to be informed about the labour process at the 12 week check up, rather than waiting until 28 weeks, as many women give birth before this.  13. Investment in midwifery training to educate on high risk conditions such as PPROM  If you want to know more, then follow us on the Little Heartbeats Facebook page, awareness on PPROM, with a webpage coming soon. In memory of all babies gone to soon due to PPROM, and for all our miracle babies and their parents. For all PPROM mothers on bed rest, not only praying for a miracle, but having to fight for the right care. This should not be the case in 21st century Britain. Save babies lives today and sign.   Our blogs: * * * Fundraising for our babies, raised to date over £8k  The hope is to have our webpage up and running, and having that source, with the correct medical guidelines, along with real life stories for all outcomes.  Our Webpage will be coming soon, run by the parents that have experience this condition, we hope it makes a difference. To Donate UCLH: Text; PROM49 with amount £1 to 70070  Tommy's: Text; PROM75 with amount £1 to 70070  Bliss: Text; PREM52 with amount £1 to 70070   Why I have started this petition From my own personal experience, I am having to deal with a legal case, due to failings to getting my voice heard, I have asked numerous times for ADR to ensure that next time, both of my local medical providers, that they treat PPROM as emergency, instead in my case I was sent home. I have lots of nightmares, and cannot grieve until this is over.    We since had number of women, asking us for what the guidelines are, and in some cases, babies have survived, and most importantly regardless of the outcomes, patients have been grateful for the information and knowledge. 

Ciara Curran
4,729 supporters