Petition to UK Parliament
MAKE FIBROMYALGIA A DISABILITY
Suffers with fibromyalgia struggle with the condition on a daily basis, they often do not receive the medical help or support that could be provided. America take the lead with Fibromyalgia research and treatment but the UK are not following suit. As a fellow fibro sufferer I believe it is time that we all join together and fight to get the debilitating condition recognised in parliament as a disability at last, also to gain better treatment and support. please visit the web page at: www.letsgetfibrointoparliament.simplesite.com Facebook page at: https://www.facebook.com/fibrogetintoparliamentmakeachange/?rc=p Twitter page: @FibroPetition Instagram: @fibromyalgialetsgetto YouTube: Fibromyalgia- get it to parliament #FIBROFIGHTERS #STANDUP #MAKETHEMHEAR@FibroPetition Please note that there is also a paper petition
Petition to UK Parliament, Theresa May MP
Petition for the release of Charlie Gard from Great Ormond Street Hospital's care.
What do we want? We the undersigned call on the Prime Minister to help release Charlie Gard from the care of Great Ormond Street Hospital so that he can undergo treatment in another hospital of his family’s choosing. On April 11th 2017 a high court judge ruled that Charlie’s parents be stripped of their parental rights and Charlie be refused all treatment. Charlie’s parents are running out of time with their baby, we feel strongly that Charlie should have a chance to live. He literally has nothing to lose but potentially a healthier, happier life to gain. With the help of over 200 thousand people from all over the world, Charlie’s parents have managed to raise over £1.3m so that their son can benefit from treatment. Why do we want it? Charlie Gard was born perfectly healthy on the 4th August 2016. He was admitted to hospital at 8 weeks old and was diagnosed with a devastating disease called Mitochondrial Depletion Syndrome. Charlie’s condition is caused by disruption in the mitochondria, the part of the cell that provides energy to his muscles, kidneys and brain. After seemingly endless research and speaking to doctors all over the world, Charlie’s parents found a doctor in the US who has been treating children with similar types of Mitochondrial Depletion Syndrome using something called Nucleoside Bypass Therapy. Nucleoside Bypass Therapy could potentially repair Charlie’s mtDNA and help it synthesize again by giving him the naturally occurring compounds that his body isn’t able to produce, it’s a non-harmful, non-invasive oral medication. Charlie Gard has been accepted by doctors in the US and with funds having been raised we now need permission to remove Charlie Gard from the care of Great Ormond Street Hospital where doctors want to move him on to palliative care. Charlie’s parents have spent over 3,000 hours at his bedside and know him better than anyone else. They are absolutely convinced he is not in pain. When he feels their presence, he opens his eyes as much as he can and they do not believe he is blind. High Court judge Mr Justice Francis ruled that in all ‘likelihood’ Charlie had suffered severe and irreversible brain damage and there was little hope the treatment could achieve ‘anything positive for him. We do not believe that ‘in all likelihood’ is a strong enough reason to sentence Charlie to death. Charlie’s parents know his sleep/wake cycle and can wake him up by tickling his feet and soothe him to sleep by stroking his head. If his parents thought there was absolutely no hope they would not be fighting. We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives starting with Charlie Gard.
Petition to UK Government
Allow all those who wish to donate and can do so safely the ability to do so
Our Work FreedomToDonate is a growing and passionate team of volunteers with political, campaign and PR backgrounds. We are supported by the National AIDS Trust and working alongside other National LGBT and HIV charities such as Stonewall to raise awareness of the current regulations on blood donation, and to guide the ongoing re- view into who can safely donate blood. Long Term Goal In November 2015 in the House of Commons in answer to a question on the campaign, the Public Health Minister, Jane Ellison MP announced a review by the Government’s advisory committee, the Advisory Committee on the Safety of Blood, Tissues and Or- gans (SaBTO) into the deferral criteria for blood donation. Our long term goal is to end the current 12 month deferral period for Men who have had Sex with Men (MSM) and the blanket ban on anyone who has ever had sex for money or drugs or ever in- jected drugs. Short Term Goals Our short term aims are primarily to raise awareness of the current regulations and to apply Parliamentary and public pressure to ensure the best possible outcome of the announced review. To do this, we will be undertaking a range of third party stake- holder engagement and will be working closely with the All-Party Parliamentary Group on Blood Donation, for which the campaign is the Secretariat.
Petition to Simon Stevens
NHS: Urgently review postnatal depression treatment and care (& care for all perinatal mental illnesses), so every mother gets the help they need.
Last weekend would have been my wonderful sister Emma's 35th birthday. Emma, or ‘Emsie’ as we called her, died in December 2011, six months after giving birth to her first son. We will still celebrate Emsie's birthday, with all those who loved her, and her gorgeous son who only had his mummy for 6 short months. Emma had been under the care of the local Mental Health ‘Crisis Team’ for months before she died. This was not specialist peri-natal mental health care, but general ‘crisis’ mental health care. No one in that team was experienced enough in peri-natal care to understand or recognise how unwell Emma really was. Emma kept trying to tell them, so did her GP and so did we, her family. The Crisis Team was all Emma had – there was nowhere else for her to go for help. The day before my sister died she repeatedly said to the Crisis Team that “I’m not safe” and that she was experiencing incessant thoughts of being dead. Emma discussed hospital admission with the Crisis team on this day, Emma should not have been given the option, the decision should have been made for her, and it is likely that she would not have died. We didn't know about this request or her plans, but we did know she needed help. We had asked for Emsie to be treated in a special mother and baby unit but the nearest one wasn't in her health trust area - so she couldn't use it. The NHS has admitted legal breach of duty and causation, and that Emsie’s right to life was violated due to the NHS failings. Despite the shocking findings, I don't believe anything has changed Women suffering from postnatal depression are still not getting the care they need. That's why I've started this petition calling for NHS England, who have the responsibility to commission care postnatal care, to urgently review the situation. Please help me by signing here. One in ten mothers experience some kind of postnatal depression. But research by the National Childbirth Trust has found only 50 out of 193 NHS trusts in England provide a specialist mental health service to women when they give birth. With nearly 700,000 live births in England and Wales last year, this means of an estimated 70,000 women suffering from postnatal depression, only about 25% would have had access to the specialist care they need. This equates to 52,500 mothers a year being denied access to the specialist mental health care they need.  Our case has revealed that if Emma had been referred to for specialist care she would have recovered. As a family we now have to live with the devastating consequences of this lack of care. No child should be without his mother because of an illness which is treatable. Simon Stevens the CEO of NHS England has the power to instigate a review of the care provided for women and to commission new services where there are none. He can help make sure no other family have to suffer in this way. Charities have started to speak out about the lack of care for postnatal depression. Now we must show NHS England that it is something people across the country are worried about. Please help make sure no other mother is left without care by signing my petition for an urgent review. 1- http://www.theguardian.com/society/2014/jul/06/mothers-at-risk-as-nhs-fails-to-provide-postnatal-depression-care 2 - http://www.ons.gov.uk/ons/rel/vsob1/birth-summary-tables--england-and-wales/2013/info-births-2013.html
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 Sue Powell Simon Stevens NHS CEO (Islingon Manager LD), Nhs islington NHS England Simon Stevens, Simon Galczynski .... Simon Stevens NHS England., David Cameron MP, Ed Miliband
Bring my son Stephen home & care for him in our community #bringstephenhome
My son Stephen is 19 years old. I love him to bits but right now I am desperately worried for him. He has autism and finds it hard to communicate. For over a year now he has been living in a unit at St Andrew’s Hospital, Northampton, which is 80 miles from our home in London. He has learning difficulties but he is being kept under the mental health act at a psychiatric unit, with patients much older and with a range of different conditions. He has the sweetest smile but since he has been there I haven’t seen it once. It's not the right place for him - even his consultant agrees he should not be on the mental health register and should be moved somewhere more suitable. We have to travel miles each weekend to see him and sometimes we only see him for a few minutes, sometimes we travel all the way to see him, only to be told that we are not allowed a visit. And other times he has been put on so many drugs he just falls asleep. It's is heartbreaking to have to leave Stephen there. He is covered in bruises and has gashes all over his head from where he has hit himself from being anxious. Right now the local authority is reviewing where to place Stephen. They want to move him to another hospital in Colchester but that won't solve anything. We want Stephen to have a better quality of life; to be able to spend time outdoors, to be around his family more often. Ideally we want Stephen to live with us as a family with the support of carers. He should also be taken off the the mental health register, so he has more freedom for how he lives his life. Other families who have loved ones with autism have successfully fought to have them live in homes with specialist carers near loved ones. And the Government made promises that people with autism and other learning difficulties should be cared for in their communities with the help of their families but this promise is being broken for Stephen. Stephen is being let down by the institutions that are meant to be caring for him - locked up in a hospital and lost to a system that wants to tick boxes instead of care for my son. Stephen deserves to be allowed to live a life in safe place with carers who understand his needs and surrounded by people that love him. Please sign my petition and help my family but most of all help my son.
Petition to McGills Bus Company, Humza Yousaf, First Group Plc, Rt Hon Chris Grayling, SPT , Arrival UK buses, Bus users uk /transport focus, Stagecoach , Megabus , Bus Users Scotland
Concessionary Transport For All Carers -They Deserve The Help!!!
Transport costs are a massive issue that affects so many carers of all ages, from as young as they start school till older adulthood. Many carers face huge financial difficulty and as a result are unable to have much of a social life of there own as they can not afford to get around by public transport. The simple task of getting to shops, collecting medication from the chemist or doing many other things that come as part of the daily routine that carers face on a day to day basis. Alongside a caring role its important for carers to be able to attend support groups and meet with friends in order to have a healthy social life which many can not do due to lack of money for buses or even trains depending on where you stay. As a result of being able to get out and about it allows the carer to be less stressed and lowers the chances of developing a mental health issue due to the many pressures of the caring role. The cost of travel may not seem alot of money to many however £4.00 per adult a day adds up to £28.00 a week(varies dependent on where you are for bus fares) which is a huge amount of the income a carer receives.Having concessionary travel or even a discount on travel for carers would be huge benefit to so many as many people say companion card is enough . However people do not realise the cared for has to be present to allow card to be used, a carer is 9 out of 10 times on there own while traveling so as you see companion card is useless at this point. 45% of young adult carers (18-25) have reported that they have mental health problems due to their caring role and the struggles they face because of it. 68.8% of older carers say that being a carer has an adverse affect on their mental health. This could be lessened by such a small change like concessionary or discounted travel. For young people aged 16-19 or in full time education who have a young Scot card you are entitled to a discounted rate of travel however, this discount is only valid on single journeys. In most cases this is no use to a carer as they are making return journeys especially if they are in further education and have a long distance to travel everyday or do not live with the person theyou provide care for. Some carers have to travel many miles just to visit the person they care for if they are in specialised hospitals or care homes. Being a carer is not all bad it has many positive aspects such as learning crucial skills such as observation skills, listening skills, budgeting skills, organisation skills, being trustworthy and so many more. These skills would be of so much use to the employment field but unfortunately not many employers see this. Carers do this on a daily basis because they care even when the cared for could end up in a hospital, care home or in a looked after residential setting. When this happens the carer will do whatever they can to get to the cared for even if it results in at times not eating or walking miles due to not having money for transport. This is why I feel so strongly about getting support for carers when it comes to transport. I hope that carers and decision makers will get behind this campaign and help to change so many people’s lives for the better. Is free concessionary transport for carers really too much to ask for when carers dedicate their lives to provide care to others? Please note this campaign is UK wide. If you feel I have missed a major decision maker please contact me, I have been in contact with many UK decision makers already. I can not realistically list every contact on this petition as some companies don't publicly list their email addresses. If you would like more information please contact me.
Petition to Jeremy Hunt
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