Wow! Thank you for all you are doing. I’m humbled. Things have to change. I’ve been ill 15 years next month. I used to be a nurse and at the same hospital I was refused treatment via accessing the fatigue services because the head of Dorsets fatigue service would only diagnose me with fibromyalgia but not ME as well. When I asked why not, his reasoning was because he doesn’t give out two diagnoses 🤷♀️
Three years later I finally got diagnosed by an ex colleague of his privately in Hampshire. I now have severe ME & bed bound but up to the bathroom.
Yesterday I was in hospital for a procedure and the nurses didn’t know what ME was. I asked if the bright light above me could be switched off but she pulled the curtain instead. A while later the male nurse in charge asked the nurse why was the curtain drawn and the reply was oh she’s got a migraine and she’s anxious. That was a lie because those words didn’t come from me. The nurse in charge tutted & sighed then mentioned anxiety & chuckled.
I was asked if I needed anything specific in the treatment room and I mentioned noise & light as they can trigger my seizures. I was told that had been relayed to the nurses in the treatment room. When I arrived a nurse said your mood lighting awaits. I didn’t laugh. I had several seizures during the procedure.
And this was a good experience compared to others which makes it all so much worse!
I’m so glad you keep pushing for us – thank you! I wonder if it would also be fruitful to approach the Lib Dems given care was their top priority in the last election and there’s been a lot of recent press about how they’re trying to ensure Wes Streeting invests in the NHS beyond keeping it afloat.
If it worked, we would have the benefit of their influence and they would have the benefit of positive media attention for supporting a severely neglected and marginalised group.
I concur 100% with what Helen has said. We have to find ways to pressure or entice them into acting on our behalf by pointing out ways in which it is also in their interests to do so. I may be cynical but appealing to their sense of justice is futile. Regarding budgetary issues surely it wouldn’t cost a fortune to invent ways to cajole GPs to be aware of and implement the 2021 NICE guidelines- that would be a good start! In the long run just ignoring this ‘invisible’ illness will cost much more than tackling it head on.
I welcome this initiative which hopefully will gain some media attention.
Having said that, unless significant pressure is brought to bear on Streeting, who wants to see further privatisation of the NHS, then nothing is going to change.
You have to understand the mindset of Streeting and Starmer which is to further privatise the NHS under the guise of improving services. We have to be clear these people don't care about ordinary people, especially people with ME. If you believe otherwise then you are deluding yourself.
The NHS is on its back and struggling tremendously. Starmer has made it clear that the NHS has to be reformed ie further privatisation for it to receive extra investment.
Last week I had my monthly meeting with one of the senior decision makers for my regional ICB and he made it clear that they were seriously struggling with budgetary issues. He has been very honest with me pointing out that there won't be any money to improve clinical services across the region.
We will be getting an ME coordinator for the region for 1 year only but the person will have no budget. They will be able to plead and try cajole the local ICBs into implementing those aspects of the new NICE guideline which have minimal costs.
The ME community has to try build a block of supporters amongst MPs, especially Labour ones to put pressure on Starmer and Streeting.
This initiative by health professionals is welcome and we can use as part of our lobbying efforts with politicians.
I am actively attempting to obtain a prescription for PAXLOVID for my daughter ,an NHS CAMHS Therapist who has also. just qualified as a CBT therapist.She contracted Covid in 2020 which resulted in long covid to the present day.She was off work for a full 12 months..Her VAGUS NERVE was significantly affected with resultant neurological damage.She lost the ability to read and the brain fog caused her to not recognise me as her mother .Her executive functioning was so impaired that everyday functioning became impossible.She was totally sensitive to noise and light and kept collapsing on attempting to walk.These symptoms took a whole 12 months to improve to a point where she could attempt a phased return to work.
18 months on she still suffers brain fog to a lesser degree and exhaustion.The only foods she is able to eat are low histamine and any variation causes intense bladder and intestinal inflammation.
On Thursday 19th,the day after this letter was sent by so many Health Professionals to Wes Streeting ,my Daughter tested positive for Covid again.I was terrified.So was she..
On Friday her GP refused to action a prescription for PAXLOVID. THEIR POLICY IS NOT TO PRESCRIBE ANTI VIRAL MEDICATION THEMSELVES. SHE WAS REFERRED TO 111 FOR AN INITIAL HEALTH ASSESSMENT.
WHEN SHE PHONED THEM SHE WAS DENIED A PRESCRIPTION THAT DAY FOR PAXLOVID AS SHE WAS NOT ON THEIR HIGH RISK LIST OF ELIGIBLE PATIENTS .AS A LONG COVID SUFFERER .
i hope this post reaches the eyes of Wes Streeting .Tomorrow I will be handing complaint letters to the GP PRACTICE and next door PHARMACY as the dose has to begin by the 5th day,tomorrow!!!
No one other than carers for long covid suferers and those who are battling long covid will understand the terror I feel at the moment for the outcome of this current illness for my daughter who has felt desperately ill over the weekend.
Wow! Thank you for all you are doing. I’m humbled. Things have to change. I’ve been ill 15 years next month. I used to be a nurse and at the same hospital I was refused treatment via accessing the fatigue services because the head of Dorsets fatigue service would only diagnose me with fibromyalgia but not ME as well. When I asked why not, his reasoning was because he doesn’t give out two diagnoses 🤷♀️
Three years later I finally got diagnosed by an ex colleague of his privately in Hampshire. I now have severe ME & bed bound but up to the bathroom.
Yesterday I was in hospital for a procedure and the nurses didn’t know what ME was. I asked if the bright light above me could be switched off but she pulled the curtain instead. A while later the male nurse in charge asked the nurse why was the curtain drawn and the reply was oh she’s got a migraine and she’s anxious. That was a lie because those words didn’t come from me. The nurse in charge tutted & sighed then mentioned anxiety & chuckled.
I was asked if I needed anything specific in the treatment room and I mentioned noise & light as they can trigger my seizures. I was told that had been relayed to the nurses in the treatment room. When I arrived a nurse said your mood lighting awaits. I didn’t laugh. I had several seizures during the procedure.
And this was a good experience compared to others which makes it all so much worse!
#ThereForME
I’m so glad you keep pushing for us – thank you! I wonder if it would also be fruitful to approach the Lib Dems given care was their top priority in the last election and there’s been a lot of recent press about how they’re trying to ensure Wes Streeting invests in the NHS beyond keeping it afloat.
If it worked, we would have the benefit of their influence and they would have the benefit of positive media attention for supporting a severely neglected and marginalised group.
I concur 100% with what Helen has said. We have to find ways to pressure or entice them into acting on our behalf by pointing out ways in which it is also in their interests to do so. I may be cynical but appealing to their sense of justice is futile. Regarding budgetary issues surely it wouldn’t cost a fortune to invent ways to cajole GPs to be aware of and implement the 2021 NICE guidelines- that would be a good start! In the long run just ignoring this ‘invisible’ illness will cost much more than tackling it head on.
I welcome this initiative which hopefully will gain some media attention.
Having said that, unless significant pressure is brought to bear on Streeting, who wants to see further privatisation of the NHS, then nothing is going to change.
You have to understand the mindset of Streeting and Starmer which is to further privatise the NHS under the guise of improving services. We have to be clear these people don't care about ordinary people, especially people with ME. If you believe otherwise then you are deluding yourself.
The NHS is on its back and struggling tremendously. Starmer has made it clear that the NHS has to be reformed ie further privatisation for it to receive extra investment.
Last week I had my monthly meeting with one of the senior decision makers for my regional ICB and he made it clear that they were seriously struggling with budgetary issues. He has been very honest with me pointing out that there won't be any money to improve clinical services across the region.
We will be getting an ME coordinator for the region for 1 year only but the person will have no budget. They will be able to plead and try cajole the local ICBs into implementing those aspects of the new NICE guideline which have minimal costs.
The ME community has to try build a block of supporters amongst MPs, especially Labour ones to put pressure on Starmer and Streeting.
This initiative by health professionals is welcome and we can use as part of our lobbying efforts with politicians.
Was there ever a response to this?
HI EVERYONE.WE LIVE IN WALES.
I am actively attempting to obtain a prescription for PAXLOVID for my daughter ,an NHS CAMHS Therapist who has also. just qualified as a CBT therapist.She contracted Covid in 2020 which resulted in long covid to the present day.She was off work for a full 12 months..Her VAGUS NERVE was significantly affected with resultant neurological damage.She lost the ability to read and the brain fog caused her to not recognise me as her mother .Her executive functioning was so impaired that everyday functioning became impossible.She was totally sensitive to noise and light and kept collapsing on attempting to walk.These symptoms took a whole 12 months to improve to a point where she could attempt a phased return to work.
18 months on she still suffers brain fog to a lesser degree and exhaustion.The only foods she is able to eat are low histamine and any variation causes intense bladder and intestinal inflammation.
On Thursday 19th,the day after this letter was sent by so many Health Professionals to Wes Streeting ,my Daughter tested positive for Covid again.I was terrified.So was she..
On Friday her GP refused to action a prescription for PAXLOVID. THEIR POLICY IS NOT TO PRESCRIBE ANTI VIRAL MEDICATION THEMSELVES. SHE WAS REFERRED TO 111 FOR AN INITIAL HEALTH ASSESSMENT.
WHEN SHE PHONED THEM SHE WAS DENIED A PRESCRIPTION THAT DAY FOR PAXLOVID AS SHE WAS NOT ON THEIR HIGH RISK LIST OF ELIGIBLE PATIENTS .AS A LONG COVID SUFFERER .
i hope this post reaches the eyes of Wes Streeting .Tomorrow I will be handing complaint letters to the GP PRACTICE and next door PHARMACY as the dose has to begin by the 5th day,tomorrow!!!
No one other than carers for long covid suferers and those who are battling long covid will understand the terror I feel at the moment for the outcome of this current illness for my daughter who has felt desperately ill over the weekend.
Oops! My brain fog must have kicked in-my apologies ,I should have said MYRA in my opening sentence not Helen.
Thank you 👏👏👏