children's health

21 petitions

Update posted 2 months ago

Petition to Esther McVey, Jeane Freeman, Angela Constance

Recognize Cyclical Vomiting Syndrome as a disability.

Cyclic vomiting syndrome, or cyclical vomiting syndrome, (CVS) is a chronic functional condition of unknown cause characterized by recurring attacks of intense nausea, vomiting, and sometimes abdominal pain, headaches, or migraines and prostration along with many other symptoms with no apparent cause. Please see the link below for in depth information on what CVS really is. Cyclical Vomiting Syndrome (CVS) is thought to affect 2% of the population. Our daughter is a sufferer of this condition, but more recently she has become plagued with IBS/irregular and slowed peristalsis which is excruciating for her and exacerbates her CVS, it has overcome our life. We have been struggling with this since she was 13 months old. While we did not receive a formal diagnosis of what was wrong until 2015 (aged 6 yrs) when her school attendance dropped to 71 percent. We endured years prior being told there was nothing physically wrong with her, she was simply just prone to stomach upset and we were being overly cautious, paranoid, hysterical and neurotic parents every time she would have an episode as it required either being taken to hospital or to see a GP and the episodes would advance through it’s phases rapidly. Now at age 9 she is having as patterned 19-24 episodes in a year, resulting in missing up to 33 days a year of school, and she is symptomatic almost every other day which means she sometimes incapable of completing a full day of school. Having been left with no answers, no help and no support for our daughter, we decided to take a pro active stance after we moved house to an entirely new area. I researched and googled until the early hours for months and came across the CVSA Nordic website. It soon became very clear that this was possibly what was wrong with daughter. We followed the advice on the website and started keeping episode diaries. These listed what she had been doing up to 24hrs prior to the episode, what she had to eat, how many hours sleep she had, what symptoms she was presenting with and how long the episode lasted. We did this for a few years and then showed our new GP who has been an amazing source of support and strength to us. It was then “suspected” she had CVS, referred to the Paed team at the hospital and it was confirmed, diagnosed. You can read what this is like for my daughter below. No two sufferers of CVS are the same and cases can not be treated the same. CVS has no known cause, it has no cure. It can only ever be managed the best it can. We know that in our daughters case there are identified triggers that set her episodes off, normal every day activities that we all take for granted, we have tried many different techniques and drug therapies to minimise exposure and reduce episodes but we can not stop exposure to life, all attempts to reduce frequency have failed and while we have treatment to administer to stop vomiting during an episode it does not remove the additional symptoms that come with it, so we have now got a default setting that our daughter has to be sedated in the hope that deep sleep resets her system. Her episodes are very different from lifestyle activated episodes through physical exertion, allergies, sleep deprivation, exhaustion, positive and negative excitement etc to episodes activated from viral or bacterial infections. The latter are much more severe and much worse usually resulting in hospitalisation. Normally hospitalisation is counter therapeutic and our daughter requires much more extensive home care than other children the same age who do not have a disability or other chronic conditions. She also has dental issues that have been picked up by her dentist. CVS affects the mouth and teeth in similar ways to diseases associated with chronic vomiting, such as bulimia, and can cause tooth sensitivity and erosion, cavities, periodontal (gum) disease, dry mouth, salivary gland enlargement and trauma to the oral tissue. Our daughter can not enjoy the normal activities that children her age or even her younger sibling can with sports, she is unable to do any kind of sport activity. While her class is partaking in the normal exercise regime at school, hers is altered and she  is excluded due to the limitations CVS inflicts upon her.  In the UK it is not recognised as a disability. This condition can leave a sufferer very sick and vomiting for hours, or even days, at a time. It can be a frightening condition that affects everyday life. I am asking the Department for Work and Pensions of the UK Government to recognize this debilitating condition as what it is, a disability. It disables my daughter in almost all aspects of her life. Adult sufferers and caretakers struggle to hold down a job, due to absences, which is an added strain and stress on them, Where am I going to find the money to pay my bills as I haven't been able to work this month??If CVS was recognised as a disability, quality of life would be better. Sufferers and caretakers would have a usual, regular income and wouldn't have the stress of not being able to work or constantly being fired. Please sign and share my petition to urge the Government to recognise CVS as a disability, so that sufferers like my daughter can get the support they need. There is no mention of CVS in any of DWP decision makers guidance. I feel it were to be listed and recognised properly as the disabling and debilitating condition is truly is, sufferers who are so struck down with this condition that it does impact and impair their daily lives, when they do make a claim for help it would lessen the risk to the stressors of having to go through the lengthy processes of Mandatory Reconsiderations, Appeals, Tribunals. All which are triggers points leading to exacerbating episodes. The DWP would become more educated, understanding and knowledgeable of what this disease really is.  Some cases are so severe that a sufferer requires immediate hospitalisation, for Iv fluids (dangerous dehydration) and Iv pain relief. A sufferer can be left bed ridden or hospitalised for days. The number of "attacks" can vary, as can the space between attacks. Between attacks, after recovery, a sufferer can often feel fine and sometimes the sufferer is symptomatic most the time in between due to the cycles not being broke. During an attack a sufferer can experience retching and vomiting that often starts in the night or early morning •vomiting up to five or six times rapid pace in 15 minutes, and up to 20+ times in 60 minutes, for up to 10 days •may not be able to move or respond •other possible symptoms: -abdominal pain, -diarrhoea, - fever, - dizziness, - headache, - sensitivity to light, - extremely pale skin, - drowsiness or unresponsiveness,- drooling or spitting excess saliva, and many more Not only do we need recognition of this disease as a disability but we need more awareness of the condition. Right now there is no cure, just management. I believe that this is because its not commonly known about. CVS research is still in its infancy

Karen Young
1,987 supporters
Update posted 2 months ago

Petition to Embassy- , Jeremy Hunt, U.S. Senate, UK Parliament

Possible Prejudice Against Child For Life Changing Treatment

An appeal to all - WE ONLY HAVE 7 DAYS.  To the U.K Parliament, U.S Embassy in London, U.S Senate! Help!! Ayden is a sweet, innocent little boy who was born with Spinal Muscular Atrophy - a genetic disorder- which has meant that all his life he has been unable to stand or walk. To his parents disbelief, he was recently invited by U.S doctors to participate in a 12-month clinical trial in Florida from the 20th of July, which could stop the relentless progression of this disease. An opportunity any loving parent would grab in order to help their child's life, or at least, to ease their pain. However, their application for a B2 medical visa was rejected yesterday by the U.S embassy in London and placed under review, which could take months! His parents are both upstanding British nationals, and have traveled frequently to the USA on ESTA's leaving little room to understand why they are being denied this precious chance to save their child, other than who they may be. They left everything here in Kenya where they had recently moved to, so they could pursue this treatment...and are devastated by the current outcome. As a story I've gotten to know more of through mutual friends, it breaks my heart. I must support them, and can only hope for the kindness of strangers.  Please all! Lets come together and save Ayden's life! Let us get this to the right people! and help save a child's future! In number we are strong. Bless you all!

Melissa Serah Marie
284 supporters
Started 2 months ago

Petition to Hon. Justin Trudeau, Hon. Governor General Julie Payette, Hon. Ahmed Hussen, Hon. Jean-Yves Duclos, Hon. Ralph Goodale, Hon. Maryam Monsef, Hon. Jody Wilson-Raybould

Urgent Changes need to be made to the Canadian Passport with respect to travel with children.

According to Stats Canada, there are about 8 million children under the age of majority. Of this statistic there are "About 1.2 million separated or divorced Canadians that have children 18 years or younger".  means there are between 1.2 million and 8 million children who are not being adequately protected by the current passport and impacted by one small omission. Background My former partner and I fell into the statistic of separated parents. We share joint legal guardianship of a child under the age of 18. We are both from different parts of Canada and have immediate and extended family living both inside and outside Canada. I chose to live in the home province of my partner, commit to being there for our child, to love, protect and educate and to this end provide access to grandparents who both love in a way that only grandparents can, and provide and a much larger view of the world than we can as parents. The issue In 2012 our child communicated that while travelling abroad “Grandparents got into an argument with the GPS while driving on the highway and nearly collided with another vehicle”. At the time the emergency contact information listed in the child's passport was for the same parent that the child was travelling with. My partner and I discussed this and concluded that the passport, as it stands, is inadequate where it comes to providing critical contact information for both legal guardians. This had the potential of negatively impacting our child in the event of an emergency, this goes equally for Married and Separated couples alike. Timeline   December 2012 I went to the local passport office to raise my concerns and discuss solutions. The passport officer informed me that permanently altering ie permanently affixing additional emergency contact information in the passport would invalidate the passport resulting in replacement costs for a new passport. They informed me that I could state my concerns and email December 6, 2012, an email was sent stating the problem and possible corrective solutions. Summary of E-mail sent to Passport Canada Solution 1 Redesign the passport to provide space for two emergency contacts. (In researching passports I discovered that there are several countries that provide two entries for emergency contact.) Advantages/Disadvantages. Having two entries would provide alternate contact information if the parent travelling became unable to act in the child's best interest. However, this would require a costly redesigning of the passport and current holders would need to purchase a new passport when the redesigned Passport is issued. Solution 2 A government-issued sticker much like a visa could be issued to provide the additional space to record the information of both legal guardians. Advantages/Disadvantages. This could provide a means of recording contact information for both legal guardians without necessitating a costly redesign of the passport and could be issued at a nominal fee less than that of a new passport, further if the contact information changes for either parent a new sticker could be issued as well the contact information could be printed on the sticker assuring legibility by utilizing a standardized font rather than handwriting which at times can be illegible. The disadvantage is that it would take up one page in the passport unless it would be acceptable to place this permanent sticker over the existing emergency contact information on page 4. December 7, 2012, a confirmation email was received thanking us for our interest in assisting Passport Canada to deliver its services and to be advised that the information has been forwarded to the appropriate division for review.   April 25, 2016, Received a reply from Effective July 2, 2013, primary responsibility for Canada’s Passport Program was Moved to Immigration, Refugees and Citizenship Canada (IRCC). May 20, 2016, Received a reply from stating that unfortunately since space is limited within the passport they are unable to allocate any other areas for additional emergency contact information. August 2017 the Canadian Passport was modified to be more respectful of the spectrum and diversity of its citizens.   Action/Hope I hope to get a minimum 966,000 signatures by November 20, 2018 (Children’s Day) present this to the Government of Canada and ask them to reconsider the above proposals.   Thank you for your time, consideration and care. Sincerely Julian Plestina Vaandering

Julian Vaandering
11 supporters
Update posted 2 months ago

Petition to Jackie Doyle-Price MP, Theresa May MP, Jeremy Corbyn MP, Vince Cable MP, Steve Double MP, Sheryll Murray MP, jeremy hunt mp, UK Government, Steve Brine MP, Lord Andrew Lansley CBE, Sarah Newton MP, Philip Dunne MP, Caroline Dinenage MP, Lord O’Shaughnessy, Stephen Barclay MP, Derek Thomas MP, Scott Mann MP, George Eustice MP

Implement scanning for all UK newborn babies for Hip Dysplasia

I am re-raising this issue as it is something that has personally touched my life and since being diagnosed in my teens I have faced years of multiple surgeries and continuous pain. The International Hip Dysplasia Institute suggests 9 out of 10 cases of hip dysplasia are only diagnosed during adolescence or adulthood and is the most common cause of hip arthritis in women younger than fifty, and the reason for 20% of all total hip replacements in the USA. Early diagnosis, prevention, and simple treatment is the best solution An ultrasound scan could pick up this 'silent' condition and allow the child to have less-intrusive treatment rather than surgery later on in life. Dysplasia, when detected within the first few weeks of life, can usually be corrected by simply placing the baby's legs in a special harness for about three months. Hip dysplasia is a condition where the 'ball and socket' joint of the hips don't properly form in babies and young children. Implementing scanning for all UK newborns for hip dysplasia and ensuring immediate less-intrusive treatment if found could reduce lifelong surgery and disability. It is said that 'If all babies were scanned and treated in their first 6 months of life it would reduce dysplasia surgery by 90%'. The NHS is incredible and this is in no way meant to cause offence to them as they provide incredible care but we all know the NHS is in financial crisis. The cost of scanning all newborns and treating those with hip dysplasia early is far cheaper than the costs of finding it later with inevitable repeat surgeries, joint replacements, education and career disruption, disability benefits and treatment for depression and chronic pain. We currently check babies using the 'Ortolani test' which is a manual examination where both legs are gently grasped and rotated outwards - a clicking sensation indicates a possible abnormal hip. This manipulation test can unfortunately be unreliable even in experienced hands. It is also suggested that hospitals do not always pick up on bilateral dysplasia as it works on one hip feeling different to the other.  It is estimated that up to 50% of abnormalities remain undetected, even though babies are routinely examined twice - once soon after birth, and again at the six-week postnatal check. Hip Dysplasia is often known as a “silent” condition. It does not cause pain in babies and doesn’t normally prevent them from learning how to walk at a normal age. So if the diagnosis is missed it may not become apparent until a toddler starts walking with a limp which then can only be corrected by surgery. In girls it is often not picked up till adolescence. This is something that needs to change. I beg you to look into this issue and for everyone to sign this petition so we can activate change. This is not a preventable condition yet scanning babies will result in avoiding the need for surgery later in life and cases of disability. 

Alice Bell
10,001 supporters