1,665 petitions

Update posted 5 hours ago

Petition to To change Doctors outlook on Vitamin D and change protocol on treatment

VITAMIN D Deficiency Doctors to recognise how debillitating It can be

Vitamin D Deficiency or Rickets in Children is NOT a thing of the past. After having a Flu jab in October 2016 I woke in the night as Stiff as a board unable to move screaming the place down in agony. All my joints, arms, legs, wrists, ankles, knees, shoulders,head, neck, were in the most tremendous pain and chronic stiffness. (I had a waddling gate my bones clicked, felt soft and I screamed the house down at 4am every morning for two years, I had chronic tiredness I couldn't lift anything, or walk far or get out of a chair or in and out the bath!!) I eventually managed to move, every part of my body was agony. I also had full blown flu. I carried on for a couple of weeks even going to work in a shop which wasn't easy, using my trolley to help me walk, using my stool to help me kneel or stand cutting open packets so I could take one thing out at a time, collapsing when I got home sleeping as I couldn't keep awake, couldn't eat, no appetite, I could only stomach  bland food such as porridge or potato when I did manage to eat, but couldn't go on any longer. I made an appointment, all the Doctor said was come back in three weeks. I wasn't given any pain killers or examined or sent for a blood test. I managed another couple of weeks I thought I had a reaction to the flu jab. I saw my own Doctor who gave me some pain killers that didn't work. Just before Christmas 2016 I called the Doctor I said I felt like I was dying. He agreed I should do a blood test. January 2017 I was told my Vitamin D was borderline at 24.5 nmol I was anaemic and had a high inflamation I  was given 400iu Vit D, iron tablets and told to take paracetmol for the inflamation. Nothing changed I was sent to a specialist as it was thought  I had Fibro Myalgia. The specialist said you have Vitamin D Deficiency, CFS, Anaemia and a high Inflamation He wrote to the Doctor, I was told to take 800iu. Nothing changed apart from getting Pneumonia at the beginging of May. I could only get an appointment with the Nurses at my Practice. Thank goodness I did they got me Antibiotics (which the first Doctor could of given me at the start those Nurses were great) and told me to stay in bed for at least a week or I would have to go to Hospital. They also said my inflamation was 135.  A week later when I went back my inflamation was 14, it took my pains down a notch. My Doctor retired. The new one tested my Vit D it was now 24nmol. She gave me a liquid loading dose. By the end of August my level was 95nmol I felt brilliant. I was told to go back to over the counter tablets even though they hadn't worked. By October I was going downhill and in pain. My level was 60nmol all the pain returning. The Doctor said  "l think you've got Fibro Myagia  l'll give you meds for that."  "I said no as the specialist had said  it was Vit D and the loading dose had made such an improvement."  The Doctor tried to make out all the pain was in my head. I had to find liquid Vit D online. Which I did on Amazon and it was Vegan and Vegetarian Society approved. Now in 2019 I can walk,  go to the gym, work easier, lift, better. Pain is much reduced. It was also not mentioned about the co-factors you need to take with the Vitamin D if you take high levels of Vitamin D, Doctors do not enlighten you on this subject. I feel strongly that it was the liquid Vitamin D that made the diffrence for me. Its not as simple as get out in the sun, your body can be resistant. During my own research I discovered that 25-55 nmol used to be considered normal unfortunately some Doctors still go by this it is now shown to be 55-75nmol. BUT theres also recent  evidence to show between 120 and 200nmol is the level to aim for with taking co factors if you suffer from an auto-immune disease.Doctors wont even monitor you or Cant, they dont want toxicity to occur but will NOT monitor your condition! A lot of illnesses are conected to Vit D Deficiency inluding Osteoporosis, Osteomalacia, Fibro Myalgia, Psoriosis, Rhumatoid Arthritis, Diabetes 1&2,  Athsma, CFS/ME, Heart Problems, Obesity, Anorexia, Stroke, Dementia, Cancer,  MS, Vertigo, IBS, Thyroid Conditions, TB, Pneumonia, Depression, Tinitus, Vertigo, Eyesight Conditions and Tooth Decay. Vitamin B12 deficiency seems to often run along side Vitamin D deficiency, along with folate and ferritin. All of which need much more help.              If this condition goes un-noticed it can be  LIFE Threatening especially to young Children and some HAVE TRAGICALLY DIED. Vitamin D is your life Balance along with other Vitamins we should be taught about this in school via Science and cookery along with nutrician classes. My Son is a Type1 Diabetic, is this because I have been deficient during my pregnancy with him? More research needs to be done in this area. My Daughter has Vertigo and CFS. I have CFS, Athsma,Vertigo,Eczema, Tinitus, and I'm Partially Sighted. I paid for a test for my Daughter It was then sent to Birmingham Hospital she is 25nmol  and said deficient on her results, but was told by a Doctor at our practise she wasn't deficient, and to just take 800iu, without even a loading dose!!. The problem is this is only enough to keep your teeth in your mouth. This condition can be Hereditory but this is dismissed. My Father and his Brother were put into care in 1930 when they were little because they had Rickets and Rheumatism. My Sister had bandy legs and I have knock knees, curvature of the spine, and mis-shapen ribs. During my research  I found a document stating Rickets can come back as deficiency in later life. I joined a Vitamin D Deficiency group and there are many people going through the same as me. So must be many more. At times Doctors dont even follow the guidelines to give the loading dose then to give you a follow up plan. I want this changed, and there to be one plan put in place for the whole country because at the moment it is down to the Doctor who may or may not decide this is a real condition. Those of us going through it will know it IS very real, follow up blood tests every Three months untill its under control, then every six months untill your recovered. More treatment options, more research done and a monitor developed so you can test at home and keep on top of it yourself. Doctors dont want us to go to them as much, or go online, but we seem to have no choice if we want to get well! Treatment for Vitamin D Deficiency is incompetant mostly! It should be a working relationship between the Doctor and Patient to optimise health. And may even address some of the issues concerning the NHS today. Something has to be DONE. Lets sort this out together PLEASE HELP.   

Kristys Kampaign
292 supporters
Update posted 5 hours ago

Petition to Boris Johnson, Jeremy Corbyn, Jo Swinson, Jonathan Bartley, Siân Berry, Matt Hancock, Jonathon Ashworth, Sir Andrew Dillon, Brainstorm , Clinical Operations - Collaborative Medicinal Development, NICE, The National Institute for Health and Care Excellence, King’s Motor Neurone Disease (MND) Care and Research Centre, Sheffield MND Care and Research Centre, SITRAN , MND Association, European Medicines Agency, Ema, European Commission, Sally Light, guido rasi, Jean-Claude Juncker

Accelerated Access for Motor Neurone Disease (MND / ALS) treatment in the UK - NurOwn

Motor Neurone Disease (MND / ALS) Six lives lost daily to MND in the UK and treatments already exist. There are over 5,000 people suffering from Motor Neurone Disease (MND) in the UK. MND is also known as Amyotrophic Lateral Sclerosis (ALS) for which the Ice Bucket Challenge raised awareness in 2014.  A third of people with MND die within a year and more than half within two years of diagnosis. Six people a day are diagnosed with MND in the UK. Six people a day die from MND in the UK. The impact of MND on patients, their families and the economy cannot be overestimated. Previously, the only drug available was one not much better than a placebo.  For the first time in history patients need not die from MND as treatments now exist. However, patients don't yet have access to such treatments.  When it comes to cancer, other diseases and historically HIV / AIDS lifesaving drugs have been granted accelerated pathways through the clinical trial and drug approval processes. Furthermore, the EU drug approval process through the European Commission / European Medicines Agency (EMA) and/or the review by MHRA/NICE in the UK to approve a new treatment for NHS patients may each lag behind the US FDA approval process by 9 months or longer. While there is a movement that is gaining momentum in the US to accelerate completion of phase 3 clinical trials and approval of drugs that have been deemed safe and effective for MND patients, there is no similar effort in the UK.  This could result in a situation where a treatment is available in the US but not in the EU or UK for a year or more until approved by the EU and/or MHRA/NICE, resulting in over 2,000 lives lost in the UK during the interval. The UK has its own accelerated process known as Accelerated Assessment / Access which the UK could potentially apply to new MND treatments before or immediately after ongoing phase 3 clinical trials are complete in the US. NurOwn 1-  Stem cells are taken from the patient's own bone marrow (BMMSCs). 2-  The BMMSCs are harvested and enhanced using the NurOwn process to produce a two year supply. 3-  The enhanced BMMSCs are injected into the spinal fluid to preserve nerve cells and slow or halt progression of MND.  This injection is repeated more than once annually. Effective treatments currently in phase 3 trials: 1-      NurOwn   - Stem cell therapy (Brainstorm, US) 2-      Cu-ATSM  - A basic copper compound that crosses the blood brain barrier (CMD, US/Australia) - (Phase 2/3) The anticipated schedule in the US without an accelerated process there is listed below. - December 2020, Completion of phase 3 clinical Trial (NurOwn only)- June 2021, FDA review and drug approval- March 2022, EU and MHRA/NICE approval (without Accelerated Assessment / Access in the EU or UK) The first likely to be approved is NurOwn. It may be possible to combine both treatments potentially increasing efficacy. [ Tregs is still in early clinical trials but is also emerging as an effective treatment for MND. The above excludes a platform trial of 5 drugs due to commence in the US in 2020.] Unnecessarily, waiting, without an Accelerated Assessment / Access Review, for many more months to March 2022 at the earliest is another 4,250 lives lost in the UK despite two different safe and effective treatments being available. Current health / social care and economic costs relating to MND may well offset the cost of new treatments. There is certainly no reason for UK patients to wait beyond the date of FDA approval of NurOwn. A UK government initiative could potentially result in early approval before the FDA as clinical trial data is available and the same stem cell procedure is being carried out at hospitals abroad. If the process is accelerated in the US the FDA review and drug approval processes may commence early and/or drug approval may be granted while phase 3 clinical trials are still ongoing but with sufficient data released. The disease is fatal so approving a drug that has been shown to be safe and effective can be no more fatal than time lost without treatment.The UK government does not have to rely on the US process but can take action under its Accelerated Assessment / Access Review to approve before mid 2021. The above treatments are not a cure for MND but transform it into a disease that can be managed similar to how drugs for HIV allow sufferers to live long productive lives today.  We are at the same point in time of the drug discovery process for MND that we were in when new effective lifesaving drugs were approved to treat HIV. The only difference is that there aren’t as many influential voices calling for early access to treatment for MND patients. What can the UK government do to save over 2,000 lives per annum and reduce the cost of MND to the economy? 1- Announce a policy on MND with the objective of providing patients with treatment at the earliest possible date by actively accelerating the approval process where possible and not simply waiting for the US to approve before taking action. 2- There is nothing stopping the UK government and MHRA/NICE approving treatments before the FDA in the US, based on existing and future clinical trial data. 3- A fast track approval process for the treatment/drug in the UK under the Accelerated Assessment / Access Review or an executive order/decree that approves the treatment/drug. 4- Instruct MHRA/NICE to open discussions with the drug companies NOW to agree supply arrangements and prices to avoid having the same discussions well after the treatment is on the market in the US while people die in the UK as treatment is either too expensive for the NHS or is yet to be approved. 5- Explore the possibility of commencing new large scale (up to 5,000 patients) clinical trials at UK hospitals. One interesting future trial could be the efficacy of combining NurOwn and Cu-ATSM. 6- In the event of a likely delay to the approval of NurOwn and/or Cu-ATSM, explore the possibility of funding patient treatment abroad, where feasible, until approved and until MHRA/NICE completes its review for the NHS to provide treatment. 7- Cu-ATSM is a simple compound to produce.  An agreement with CMD in Australia/US may achieve the objective of agreeing early availability of the drug through centres that specialise in MND such as Sheffield MND Care and Research Centre.  This drug could be administered through a large scale clinical trial. 8- The UK government and NICE should contact Brainstorm Cell Therapeutics and CMD inviting the companies to submit applications for approval / early approval. 9- The MND Association and leading MND treatment centres in the UK can be included in discussions with Brainstorm and CMD as an introduction to the treatments and to plan and prepare for patients receiving treatment. 10- MND treatment centres in the UK can start clinical trials performing the stem cell procedure without using the NurOwn platform for harvesting of bone marrow MSC until NurOwn is available in the UK. This Bone Marrow Mesenchymal Stem Cells (BMMSCs) procedure is already available in many counties. What can you do?  Write to the Prime Minister and your MP highlighting the issue so that the government can review and approve access to MND treatments early. While the UK excels in medicine and healthcare this does not apply to either stem cell procedures or those using Regulatory T cells (Tregs) in neurology and for treatment of MND. It therefore follows that effective treatments for MND in the UK may have to be provided in cooperation with other specialists or hospital departments other than neurology until there is change. There is no reason for clinical trials not to be commenced in the UK using Stem Cells and Tregs to treat MND.  It may also be possible to host trials using Cu-ATSM with CMD's permission.  Either way government, MHRA, NICE, NHS and treatment centres need to start preparing NOW. The MND Association perhaps could do more to advocate for the early introduction of such treatments in the UK and/or ensure that there is no delay upon FDA approval. Hence start planning NOW. Every life counts!   [Tregs]  [Tregs]

Sam B
3,170 supporters
Update posted 6 hours ago

Petition to South African department of justice, The South African director of the National Prosecuting Authority, South african Department of Health, South African Minister of Health

#dropitandwait SA Doctor’s profession & patient care under threat.

#dropitandwait South African doctors and their governing bodies response to the arrest and premature criminal charges laid against two doctors.  The South African Medical Association (SAMA) says it notes the warrants of arrest issued for two doctors accused of negligence earlier this week. It says it sympathises with the families, and hopes for a speedy resolution to the case to provide closure for all those involved. “A proper investigation must be conducted to assess all the factors that may have played a role in the outcomes in the cases in which the doctors are accused of negligence. It is also necessary that these factors are addressed at a systems level to ensure they are not repeated in future,” says Dr Angelique Coetzee, chairperson of SAMA. Dr Coetzee says the case should not be litigated in the media and become a political football, and that the families of those who have suffered should be respected, while the proper investigations are underway by the relevant authorities such as the Health Professions Council of South Africa (HPCSA). “The inclusion of medical professionals in the investigations is critical as these professionals understand the nuances of what might have gone wrong and that any investigations should be fair and transparent,” Dr Coetzee notes. She says the accused doctors have rights and are innocent until proven guilty. “Medicine is inherently risky, and severe consequences are unfortunately not uncommon – even when there are no mistakes involved. Until an investigation is concluded there are not yet enough facts to make any medical conclusions,” Dr Coetzee concludes. The Hpcsa warn..... “If the legal approach used in the case of Professor Beale and Dr Munshi is perpetuated, the board is concerned that medical doctors will in future allow patients to die naturally without their intervention for fear of being criminally prosecuted,” it said in a statement on Thursday.” The Medical and Dental Professions Board, under the ambit of the HPCSA, said it believed deaths as a result of “care by a healthcare professional” should not go through criminal proceedings before proceedings in terms of the Inquest Act are concluded.” “Therefore, the death of a person as a result of undergoing a procedure of therapeutic, diagnostic or palliative nature should be dealt with differently from other unnatural deaths.” “NPA spokesperson Bulelwa Makeke says...... As for arresting the doctors before the inquest was finished, Makeke says: "Even though there are still investigations to be conducted, from the evidence already in the docket there appears to be a prima facie case against both the accused." And, she adds, nothing prevents the NPA from using a warrant to ensure someone accused of a crime goes to court.” The HPCSA said it respected the rights of individuals to lay criminal charges against healthcare professionals but called for caution by the authorities. “The board calls upon the legal authorities to exercise due diligence in terms of the laws of the country in dealing with death of persons undergoing a procedure of therapeutic, diagnostic or palliative nature,” it added.” Other medical bodies have also backed the two, saying the situation was more complex than it looked. Our governing bodies have spoken:HPCSA SAMASA Private Practitioners Forum (SAPPF)SA Society of Anaesthesiologists (Sasa)Sa Gastroenterology society  (Sages)The Society of Cardiothoracic Surgeons of SA There will be more.....     Sign the petition do not let politics, anger and emotions collapse the South Africa healthcare system Allow due process to follow..... Drop the criminal case and the premature threats of arrest for medical professionals, allow the medico-legal investigation to take place. Make an informed decision after all the facts and evidence has been reviewed by both Medical and Legal experts.   Stop this unprovoked and unprecedented attack on the medical will only cause harm. The doctors and their legal team are cooperating, was there a need for handcuffs, jail and police vans? #dropitandwait #beforeitistoolate#sadoctorsunited          

Rinesh Chetty
49,122 supporters
Started 6 hours ago

Petition to Red Nose

Make Red Nose start funding SIDS research again.

In 2013 I lost my son Dylan to SIDS. He was just 15 weeks old.  Red Nose, formerly known as SIDS and Kids is known nationally as the leading (and to some, only) charity to fund SIDS research. Each year millions of Australians support Red Nose by way of financial donation, or purchasing merchandise in support of their Red Nose Day campaign.  I believe, that like myself many Australians would be surprised to find that Red Nose has not put any of these funds towards SIDS research since 2016 with only a small portion going towards a SIDS study in 2018. Currently all their funding goes towards stillbirth research, the safe sleep campaign and bereavement support.  While we recognise that stillbirth research is an extremely worthy cause, it does not help those of us who have lost our babies suddenly, and unexpectedly after birth. Our perfectly healthy, precious babies. There are many other Australian charities funding stillbirth research, that are well established and known for doing so. There is however only one other charity that funds SIDS research, and it is nowhere near as well known as your own. We deserve answers too.  How can you ask us to support you, when you don't support us?  You say that since 1989 SUDI (sudden unexpected death in infancy) has been reduced by 85%. What about the other 15%? Even one death is too many. It's 2020, and we want answers. Why, Red Nose, have you given up on us? Why don't you answer our questions? Why haven't you made public your decision to cease funding into what was your founding cause? Please help me get the attention of Red Nose by signing this petition.  Thankyou.     

Jennifer Davidson
22 supporters