Petition to NHS England
Cervical incompetence - NHS to Make Cervical Checks Mandatory From 16-25 weeks & Save Babies Lives!!
Cervical incompetence is a medical condition in which a pregnant woman's cervix begins to dilate (widen) and efface (thin) before her pregnancy has reached full term. Cervical incompetence occurs because of weakness of the cervix, which is made to open by weight of a growing baby causing pressure in the uterus as pregnancy progresses. This can cause Premature rupture of the membranes, in which your water breaks, Resulting in too many second-trimester and early third-trimester losses. Why when there is prevention from these losses is this condition still only being diagnosed on many women when it’s too late?? A Cervical Stitch (also known as a cerclage or cervical suture) Is a special stitch that is put around your cervix usually between 12-14 weeks to keep it closed, The stitch is then usually removed at around 37 weeks so you can give birth. My name is Corinne Stanley-Gonsalves, I am 22 years old, Up until 22 weeks & 4 days I had a problem free first pregnancy, My 20 weeks scan showed nothing but my super energetic baby wriggling around, but unfortunately I lost my beautiful baby boy (pictured above). While looking for Support & answers as to why I had lost my baby I stumbled across a Facebook page called Cervical Incompetence Awareness, I have since become great friends with the face behind the page Janae Rochelle, Here are our stories. On Thursday 14th August 2014 I went to bed with terrible pains in my lower abdomen and back, when I went to the toilet and saw blood I knew something was not right, in a panic my partner drove me to A&E we were there for 2 hours they tested my blood pressure and even though the bleeding and pain increased they did not seem concerned, They eventually wheeled me across to the Women’s & Children’s department where I was monitored further and assured nothing was wrong and that my baby had a strong heartbeat and was fine. Then I had the worst pain ever, as I screamed my partner went to get the midwife who performed and an extremely painful internal exam and looked at me worryingly and said my membranes were bulging, she rushed me into a wheelchair saying I did not have time to put my clothes back one, as she pushed me up to the delivery ward she whispered in my ear "You do realise we think you’re having contractions and you’re having a miscarriage" It was at that moment as if a train had crashed into my chest. When the doctor came to check my cervix he said I was 3cm dilated and at this point there was nothing they could do to stop my baby coming, and when my baby did come that he would not be strong enough to survive and they would not do be willing to do any resuscitation as it would likely cause brain damage. I was told by the midwifes that at this stage in pregnancy every day made a huge difference in development with a baby and that the longer my baby stayed inside me the more chance he would have of surviving. After 13 horrendous hours of trying to keep him from coming and listening to his strong heartbeat, our little baby decided he couldn't wait any longer to meet us, at 12.19am 15th August 2014 I gave birth to a beautiful baby boy (Pictured Above), Baby Harry Lewis at 600grams he was the most perfect delicate little person this world has seen. We could see his heart beating through his chest and we held him until it stopped, He may have only lived 10 minutes in this world but he will live forever in our hearts. No words can describe the pain of saying hello to your new born and at the same time saying goodbye... My name is Janae Rochelle and i want to raise awareness and make a CHANGE for Women who have an Incompetence Cervix like myself, I am 26 years old, and this is my story ...Last year, I was happily pregnant with a baby boy who were going to call Edgar , we were planning away i.e decorating the room ,etc. and looking forward to our new arrival. Then on the 22nd April 2013 I went to the doctors with pain in my thigh and told him it was really strong, he told me I had pulled a muscle and not to worry and he said it’s nothing to do with the baby, so i went home not worried about a thing.Then on the 25th April 2013 I went to hospital as I was having pains in my side, in my stomach and groin , they did an examination and to my horror they told me the membranes from my pregnancy were bulging out , and that my cervix had dilated.I was 22 weeks and 1 day, I was in shock, I thought everything was OK, they then told me I had a high chance of miscarrying, and I had to stay in overnight which I did to see if i would and if I didn’t they were going to do a procedure called a Cervical Stitch to help keep the pregnancy in place.Then the next day all was well and they told me I had a condition called an Incompetent Cervix. They examined me again and said they would take me down to theatre for the OP, they were taking me down to theatre to have a cervical stitch to try and save my baby boy. As I went down, to have the stitch, To my horror I had already dilated 3cms, and he couldn't be saved. That's when it sunk in, I’m going to lose this baby, as I was wheeled back up to the ward, I started to have contractions, they were awful and I just wanted them to stop as he wasn't meant to come this early and 4 hours later Edgar was born, he was so small and beautiful, seeing his little hands, his face all the features I dreamt he would look like, he did. I had to watch him die in my arms for 4 hours. There was nothing they could do as he was too small and if they did he would have been brain damaged. It was the worst day of my life and reliving it in these words brings all back. I will never forget my son, he was my first born and I will always love him. After everything that happened I never thought I'd have kids or be blessed enough to carry full term, but then last year 4 days before my birthday I found out I was pregnant, I was excited at first but then panic set in , I told the hospital and doctors straight away, they gave me the stitch at 12 weeks to hold my baby until i was full term. I got to 37 weeks and I'm pleased to say ,I was blessed this year with a beautiful baby girl called Wednesday , she was 6lbs 1oz, the greatest blessing ever! Because of my incompetent cervix I have to have a cervical stitch, which holds the pregnancy in place and I had to insert pessaries which were hormones to strengthen my cervix. If it wasn't for that stitch my baby wouldn't be here today. If you or someone you know has suffered the loss of a baby due to an incompetent cervix Janae has set up the Facebook page https://www.facebook.com/CervicalIncompetence The cervix may be naturally weak, or the weakness may have been caused during previous pregnancy, previous obstetric trauma or childbirth. The fact is it does not matter if it’s your first of fifth pregnancy, if you are young or old this can happen to any woman. So what we want is from the NHS is to do the following : *To make cervical checks mandatory from 16-25 weeks, That way if a women is showing signs of a weakened cervix, A CervicalCerlage can be put in place to save her babies life! *To have it recognised in Maternity notes, with the rest of the conditions you see like Eptopic Pregnancy etc *To have information booklets about the condition so more women are aware of it. So with these things in place, we can save many lives!!! Please sign our petition and lets make a CHANGE!
Petition to Simon Stevens, Jeremy Hunt
Don't stop funding only drug for pancreatic cancer on the CDF
Pancreatic cancer took my husband in 2009, at the age of 48, leaving me and our son behind to face a future without him. I felt distraught to lose him, just a few days more would have meant the world to me, our son and the rest of our family. Back then there was no drug that could give us that, but now there is. Abraxane is the ONLY drug for pancreatic cancer on the Cancer Drugs Fund. It can offer a person an extra few months and sometimes even years. But, from 4 November 2015 this drug will lose its funding. Pancreatic cancer is a disease which has made hardly any progress in over 40 years. Despite pancreatic cancer being the 5th highest cancer killer in the UK, it receives less than 1.5% of the research spend. This cancer has been overlooked for way too long. Abraxane represents the greatest improvement in survival for pancreatic cancer in almost 20 years – when used in combination with the standard chemotherapy for pancreatic cancer it has been found to extend patients’ lives. Taking the one glimmer of hope away from a cancer that has very little hope associated with it is wrong. The average metastatic pancreatic cancer patient is given between 2-6 months. When your life is cut this short, any amount of time is significant. What Abraxane offers if invaluable -- time to make memories, to tell loved ones how much you care for them, to do a favourite thing one last time. The drug isn’t being removed in Scotland, Northern Ireland, Wales or most of Europe. To disadvantage pancreatic cancer patients just because they are based in England is outrageous. Please help us to raise the profile of this injustice by adding your name to our petition. Last year 106,000 signed our petition on funding for pancreatic cancer, and we managed to force a debate in Parliament. Petitions have helped us to win support for this disease before, let’s use public pressure again to help people who deserve more time. Please help us to get this petition heard by adding your name and sharing so that we can get Abraxane reinstated on the Cancer Drugs Fund. Thank you
Petition to Jeremy Hunt MP, David Cameron MP
Make Autistic 'Cures' Illegal In The UK.
When both my son and I were diagnosed with autism, I did everything to research the condition and learn how to handle it best. I was shocked to discover online dozens of UK non-medical professionals claiming to sell autism “cures”. Currently there’s nothing to stop people marketing the false idea that autism is something that can be or needs to be cured. I think it’s time we change that. Autism is a neurological condition, it’s not something you can cure like an injury or illness. With the right professional therapies, people with autism can thrive, but there’s no product that can offer a magical "fix." It’s not only offensive that cures are being sold for people like me and my kids, it’s dangerous too. These treatments are unproven and some can be lethal -- the most famous MMS (essentially bleach by another name) is fed to children, given as an enema or even put into babies' bottles. It can cause seizures, stripping of the bowel and severe dehydration along with respiratory problems and there is some evidence up to 8,000 parents are buying and using it. I know that parents want to help their kids but they are being misled and misinformed. Marketers are exploiting these parents, profiting from their vulnerability and endangering children's lives. We have a law, the cancer act, that makes it illegal for people to sell cures for cancer. I think it’s about time we get a law that protects people with Autism too. Please help me by calling on the UK government to introduce a law that stops people selling cures for autism. Thank you, Emma Dalmayne. You can read about this here, here and here.
Petition to Jeremy Hunt MP
Hematopoietic Stem Cell Therapy for MS on the NHS
MS is a degenerative neurological condition that currently is treated with disease slowing therapies and symptom relief only. As it is a chronic life long condition this is very expensive HSCT is the only scientifically proven treatment that STOPS underlying disease progression in all types of MS and other autoimmune diseases it restores normal immune self-tolerance and produces lasting curative symptomatic improvement for the majority of MS patients. To date over 2,000 patients have been treated world wide, and the number continues to rise daily. However it only available in a very few locations within the U.K. and many people have to pay tens of thousands of pounds for treatment overseas. This treatment needs to be available on the NHS to all who suffer with MS and deserve the opportunity to have their lives back. Many will be able to return to work Or work for longer hours and pay their taxes. This would increase revenue for central government and in turn reduce the benefits bill. It makes perfect sense for the individual, NHS budgets and the economy.
Petition to National Institute for Health and Care Excellence
Revise Cochlear Implant referral tests !
After over twenty years of bilateral hearing aids, I have repeatedly gone through tests for a Cochlear Implant. My audiograms have been in criteria for many years but in a soundproof room I score too high on speech tests. This is not a real life situation, no other person speaking, no music, no open plan office noise. It's a scientific situation that never occurs except in a soundproof room. This needs revising and bringing up to date.
Petition to Jeremy Hunt,, Phillip Dunne, Nicola Blackwood, Simon Steven, Ian Dodge, National Director for Comissioning Strategy, NHS., Professor Dame Janet Finch
Give every mother the chance to save people like Ruby with cord blood donation.
Last year, my friend Ruby cancelled a playdate between my daughter and her two children because she felt unwell and needed to see the GP about a worrying lump. That lump turned out to be a complex form of blood cancer and now, within 3 months, Ruby is desperately searching for a stem cell donor to save her life.The more people that register to donate, the higher the chance those like my friend Ruby have to find a match and survive. We learnt that there’s a really easy way to donate stem cells by giving away umbilical cords after childbirth. Only 6 hospitals offer this service to donate through the NHS and the charity Anthony Nolan offer collection at 4 additional hospitals. This can save a person’s life but not enough people know that they can do this. That’s why I’m calling for more awareness and opportunities to donate umbilical cords. Ruby, 37, is from El Salvador via Australia and now lives and works as a social worker in London. Since being diagnosed with Acute Lymphoblastic Lympho-Leukaemia, she’s soldiered through two rounds of intensive chemotherapy in hospital.At times she has been separated from her children because of the risk of toddler colds to her compromised immune system – she heard her daughter Sofia, who was one in February, say ‘Mama’ for the first time through Facetime. One hospital that lets you donate is Barnet General and is local to me. I gave birth to my daughter at another hospital because I wasn't made aware that cord blood donation was possible. Had I known, I would have chosen to do so especially now seeing my friend fight for her life. It hurts to know that we missed such an easy chance to potentially save a life. Many of Ruby's friends and family have become parents recently and we were all astonished at how little cord blood donation is publicised and offered to new mothers. There are hundreds of thousands of wasted opportunities for those desperately searching right now.Sadly, Ruby is not alone. Every 20 minutes someone in the UK is diagnosed with blood cancer and 2,000 people a year will need a life saving stem cell or bone marrow donation from a stranger. It is even harder for those like Ruby from diverse backgrounds to find a match. Ruby is passionate about letting people know about the lack of diversity on the register and improving the chances of all people.We call on the NHS and Central Government to increase the opportunities for (and education around) donating cord blood to help people with blood disorders so that people like my friend Ruby have a chance of survival.Thank you.---Support Ruby, Sam, Daniel and Sofia at www.registerforruby.com Facebook Page : 'Register for Ruby' Google Search: 'Register for Ruby' You can also quickly and easily register to go on the database for donation yourself as an adult (if between 17-55 and in relatively good health) at DKMS. www.dkms.org.uk Please read, register and share.
Petition to Nicola Sturgeon
Reintroduce no-delay NHS dental registration on the Isle of Lewis
We call on the Scottish government to allow NHS dental registration on the Isle of Lewis. For a number of years, there has been a complete lack of dentists working on Lewis with whom a resident who is not already registered can register as an NHS patient. Instead there is an emergency-only service, and there is a "waiting-list" for registration. A resident is allowed to join the list, and then they may be allowed to register perhaps six or 12 months later if enough patients die or leave the island. Lewis has a population of nearly 20000 people, and it also has a large hospital. Until 2014 it was possible to register as an NHS dental patient here, and it is obviously still possible if the Scottish Government decides to recognise and solve the existing problem. People on the Isle of Lewis and everywhere else in Britain are entitled to have routine maintenance of their teeth conducted within the NHS. The whole principle of the NHS is that all British citizens may have their medical and dental needs met. This cannot happen when we are not even allowed to register as patients. A promise that we may possibly be able to register in a year's time is not registration. The only way we can register as NHS dental patients at the moment is to travel away from the island, to a town such as Inverness. Such a journey not only requires considerable expense but depending on a person's employment and family circumstances would also usually necessitate an overnight stay on the mainland. For many of us this would mean great inconvenience. For example we would need to arrange childcare and find alternative ways to ensure that other family responsibilities are looked after. Many residents simply cannot afford the expense and inconvenience of travelling to Inverness every few months for dental treatment. The deterioration in dental health on this island that results from the Scottish Government's inaction is obvious. The Scottish Government must therefore reintroduce no-delay dental registrations for residents on the Isle of Lewis as a matter of urgency. We do not want talk. We want action.
Petition to Department of Health
To ensure a coordinated package of aftercare for all families following the loss of a baby/child, which will involve Midwives, GPs and full support networks.
In December 2012 we lost Charlie Arthur Curtis to Potters Syndrome after 19 minutes of life. Whilst in hospital the care we received was excellent, however once we stepped outside the hospital doors we found that there was little or no support out there for bereaved/grieving families. The support we received fell well below any standard a grieving family should receive. We want our experience to help improve the support available to other parents and families in the future. In Leeds alone there are 32,000 people awaiting bereavement counselling. The wait for counselling can be anything from 6 - 18 months. Surely this cannot be right. Bereaved families need support as soon as they leave the hospital. If each family were to be given a carefully coordinated personalised aftercare package their journey through grief could be made easier. We need your support to help get the Health Department to change their bereavement services throughout the UK. We know we can make a difference with your support. Already we have been able to generate much discussion within the NHS in Leeds.