Goingviral

Hello, the admin team at the Chronic Long Covid support group are pleased to announce the launch of the World's first portal and platform for post covid syndrome patients, researchers, institutes and practitioners. It offers a global central hub for people from around the World where can synthesise what we know and are finding out and share to advance knowledge and understanding of the disease. The administration team, Chronic Long Covid19 support group. http://www.chroniclongcovid.com

@HelenH, @Stephanie O'Donohue and others..... Helen can you email me @xxx ill give you my phone number....Ive a few things to share there.

Well... I worked with Ministers on this and raised it at registration with the APPG but was excluded from the APPG, despite sending in many documents and an email to Layla Moran MP. I was told I would be contacted by her secretary and wasn't. I nevertheless sent a 10,400 signature petition asking that post covid clinics be set up at all major hospitals immediately and proposed that they be done like at Ipswich hospital on a weekend so not to impact the existing outpatient backlog. Both Sir Simon Stevens at NHS England and Matt Hancock in public said they had set up clinics, the new app and so I wrote to the NHS about it, 2 months ago... When I wrote to NHS England Sir Simon Stevens Office they were really helpful in directing us to these clinics where I was told both in writing and verbally that they would admit untested and tested patients. I had lengthy discussions with Sir Simon Stevens office and we were given contact phone numbers to enquire: - The first time I called the number said it wasn't recognised. I called several more times since June. In fact 18 times over two months. I stopped calling 5 weeks ago. - I asked an independent , reliable , unsick person to call on my behalf, Kevin Algar, our independent analyst in our group and to make a video of himself calling. He called and theres a video on you tube... - I also rang the number and then contacted the NHS office of Sir Simon Stevens again who gave me a second number when I told them the first number advertised on the CCG site doesnt work. I videoed it. - I was given a second phone number and so I called that, and guess what, the number said it didnt work, then after i kept calling it would ring off, then eventually someone picked it up. All on video also because by now I was being led, whilst sick, on a wild goose chase across the Surrey Downs. - I was lied to by the NHS and Sir Simon Stevens Office that untested patients could get access so such clinics, I knew it already as I had called and enquired and could not find any other clinics either. - I was told you have to live in Surrey, you have to be registered with a GP despite the office telling me otherwise that it was a national center, would accept both untested and tested...blah blah.I knew this because if you read the site it's a hosptial ward and you have to be hospitalized and therefore, would have been tested as that was NHS policy. - I was also told by email that you needed to be in an acute care setting, have a plan for you drawn up by professionals with a ceiling. I was basically told Bovine Excreta. - I informed Matt Hancock and I wrote a complaint to Sir Simon Stevens Office. I didnt hear back. I became apparent to me 8 weeks ago that there would appear to be, at least, a deliberate policy in place not to treat us, the untestables, to lead us on a merry go round, or a wild goose chase across the Surrey Downs as I like to refer to it. Patients cant get GP referrals, when they do and demand referrals for consultants the appointments get cancelled. I've got it all documented. But the APPG group were not interested, preferring to have only positive tested patients there and not to represent the much larger untestable group. When I reached out to the other large group to gather forces together to tackle this, my messages were ignored. So, I tried my best to deal with it. - Shortly after I flagged all this up with Matt Hancock PHE was disbanded. In fact, the very next day. it would appear what the Gov say is not being done by the NHS. But I wouldn't dare to blame our NHS because that might inflame a certain group who have berated me for getting access to Ministers you see. I said all along not to turn this into a political issue but sadly it has been, likewise, I tried to garner people across groups to prevent a 'haves' and 'have nots' with regard to testing happening and sure enough it did. Only positive tested patients appeared on BBC breakfast the ones who could be followed by clinics.. like the Seacole? meanwhile the other many thousands which is a much larger group cannot get any help. I was remonstrated in public that I might be doing more harm than good, but in actual fact I was trying to get us access to Ministers as they are the people that matter in such a pandemic. I said it had to remain apolitical issue, but others turned it into one, sadly. The untestables have now changed their name sadly to the 'forgotten victims of covid 19' because I realised weeks ago we were not going to get any help and I was right. - I suggest you write to BBC Radio Suffolk and BBC Look East as they seem to be in the know how. They invited Nick Hulme, Chief Executive of the Essex and Suffolk NHS Trust on and he talked about his long tail clinic... to treat ptsd as were all having mass hysteria and anxiety apparently... They also subsequently put up a clip of Dr Jake Suet from the APPG (probably without his permission I suspect) after I had told them he didnt want to participate (after I had asked him), they then had me on and gave out the other covid group name... you see this is what happens when people turn sickness into political issues... and it didnt come from within our group. Just to be clear. I gave up writing letters, doing newspaper articles weeks back. I suggest you write to Sir Simon Stevens Office (I wrote 10 letters to Gov/Advisors/NHS) and ask him where these clinics are, why GPs dont know. these clinics, perhaps they're in the surrey downs under a chicken coop....but I've a pretty good idea.... - I also suggest you write to Layla Moran and ask why the only Covid group to have had Ministerial meetings and a lot of correspondence with the NHS and others was not invited to participate despite us protesting whilst it was being live streamed. I was emailed and told we would be but never were. There we go... now people come to me asking what Matt Hancock is doing, rather like the BBC... funnily enough Over and out. Has phased 2 of the covid recovery app been launched yet? Someone tells me it has but i dont see it...

Why do we need GP referrals to this service for assessment? Early patients untested cannot get access to GPs, not being believed, dismissed, told they are delusional. se have been sat for months unable to get referrals ...today someone got a referral and the NHS denied them that too. So we are getting no support. We are having a host of around 200 effects (Ive documented them), most of us are weeks 12 to 33 and having lung cognitive and heart problems. We needs mri and ct scans now and we cant be joining the back of already lengthy outpatient appointments. theresa huge backlog. When is someone going to help us? #longtailgoing viral @postcovidsynd Post Covid 19 Syndrome Support Group International (facebook). Sir Simon Stevens from NHS England doesn't have time to answer our letter, he said the Seacole Centre has been set up...but it only takes tested positive patietns and the phone numbers don't work. He told us to watch himself on the Andrew Marr show..which was about this app. As you can see we still cant get referrals here either as we need GP referrals adn we cant get them/..did no one raise this? I think they did...as I did with Senior Government Advisors. Nothing has been offered to untested patients. The medical community are very much aware that we were sent home so to deny we are sick and label it as anxiety is a scandal. Likewise, graded therapy (I note exercise is on here) is not recommended as we have heart problems and some of us have done it and had heart attacks...dangerous information to share with people suffering 200 symptoms thatt the medical community have not followed us on .... health-problems (1).pdf