Very Disappointing. It seems to, once again, be making the patient responsible for ‘managing’ the illness rather than agreeing that there needs to be research and education underpinning everything. Managing cd, of course, make patients fit for work, their priority. I imagine he’s sent the same letter to many people advocating for chronic illnesses. Red flags everywhere!
This government is committed to coercing disabled people into work as reported by John pring the editor of the Disability News service. Liz kendall has been using derogatory Tory terms to basically say that those of us claiming benefits are a burden to society as the money spent on benefits could be 'better spent' elsewhere. They want to have it both ways. Attack disabled people for claiming benefits and fail to invest in treatments for the their illnesses.
Thank you for your campaigning work. Sadly, I also am not surprised by the response you received from the government.
I've been an ME advocate for many years and alot of the time it feels like banging your head against a brick wall.
Fine words are worth nothing. I want to see concrete action from the Labour government.
I am not hopeful regarding the future as it needs money to improve the lives of people with ME. We have a government committed to neo Liberal economics which is promising more austerity and massive spending cuts. This means that the minister is being disingenuous. He knows full well that spending cuts means that little will be done for people with ME. In discussions with a senior decision maker from my regional ICB it is clear that there is no money to make any improvements in services for people with ME.
As part of our advocacy work the ME community needs to join up with other disability organisations and the unions in opposing the austerity measures of thisgovernment.
Some people won't like my opinion but it is based in reality not hopium.
One sentence really stood out for me to showcase the amount of hot air in this response: "We will transform the NHS into a service that not only addresses illness but also works to prevent it."
Great, that makes a lot of sense! So what covid preventative measures have they implemented, given that the ONLY known way to prevent long covid is to avoid getting infected with Covid.
Oh, right. We only pay lip service if required measures in any way risk the comfort of the able bodied (read: are seen to cost votes in the next election).
"It has been a priority since my appointment to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are in the process of finalising the response, which I will review in due course. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish this winter." #ThereForME was not involved in drafting the Plan for ME, or in the consultation. Access to the Working Groups for the experts on ME, ie those living with the condition for decades, due to a complete absence of 'reasonable adjustments'. Does Gwynne know this?
Its yet another brush of !! Yes we acknowledge your there but i cant do anything yet response again this is all i heard since i was diagnosed with m.e in 2011!! And now i have long covid as well as trying to get back to work as a health visitor i dont want benefits but i need them and cant get pip !! 3times ive applied yet ive spent 33 years of my life caring for patients on the nhs and my family
there have been petitions. they're a very clever way for the government to be able to brush us off whilst appearing to 'do' something. If there's enough votes they will discuss this in parliament, don't actually do anything, and then proudly go this is the outcome of your petition. Just more hot air and waffle.
What we need is direct action. And able bodied people to take the action for us while we're trying to pace ourselves in a dark room.
which produces guides to help people with every aspect of a PIP claim. I can send you the comprehensive PIP guide if that would be of any use? I claimed PIP twice. On the second attempt I won after a year of fighting the corrupt DWP bureaucracy and received 2 letters of apology for the lies told by 2 different 'health professionals'.
Hi sorry just seen this thankyou x I actually applied again and won then won the tribual for the claim before and got back pay x however I’m still waiting for esa to assess me so I can move to lwrca if that’s what it is xx and I’m also trying to get my nhs pension
Very Disappointing. It seems to, once again, be making the patient responsible for ‘managing’ the illness rather than agreeing that there needs to be research and education underpinning everything. Managing cd, of course, make patients fit for work, their priority. I imagine he’s sent the same letter to many people advocating for chronic illnesses. Red flags everywhere!
This government is committed to coercing disabled people into work as reported by John pring the editor of the Disability News service. Liz kendall has been using derogatory Tory terms to basically say that those of us claiming benefits are a burden to society as the money spent on benefits could be 'better spent' elsewhere. They want to have it both ways. Attack disabled people for claiming benefits and fail to invest in treatments for the their illnesses.
Thank you for your campaigning work. Sadly, I also am not surprised by the response you received from the government.
I've been an ME advocate for many years and alot of the time it feels like banging your head against a brick wall.
Fine words are worth nothing. I want to see concrete action from the Labour government.
I am not hopeful regarding the future as it needs money to improve the lives of people with ME. We have a government committed to neo Liberal economics which is promising more austerity and massive spending cuts. This means that the minister is being disingenuous. He knows full well that spending cuts means that little will be done for people with ME. In discussions with a senior decision maker from my regional ICB it is clear that there is no money to make any improvements in services for people with ME.
As part of our advocacy work the ME community needs to join up with other disability organisations and the unions in opposing the austerity measures of thisgovernment.
Some people won't like my opinion but it is based in reality not hopium.
One sentence really stood out for me to showcase the amount of hot air in this response: "We will transform the NHS into a service that not only addresses illness but also works to prevent it."
Great, that makes a lot of sense! So what covid preventative measures have they implemented, given that the ONLY known way to prevent long covid is to avoid getting infected with Covid.
Oh, right. We only pay lip service if required measures in any way risk the comfort of the able bodied (read: are seen to cost votes in the next election).
Do better labour!
"It has been a priority since my appointment to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are in the process of finalising the response, which I will review in due course. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish this winter." #ThereForME was not involved in drafting the Plan for ME, or in the consultation. Access to the Working Groups for the experts on ME, ie those living with the condition for decades, due to a complete absence of 'reasonable adjustments'. Does Gwynne know this?
Its yet another brush of !! Yes we acknowledge your there but i cant do anything yet response again this is all i heard since i was diagnosed with m.e in 2011!! And now i have long covid as well as trying to get back to work as a health visitor i dont want benefits but i need them and cant get pip !! 3times ive applied yet ive spent 33 years of my life caring for patients on the nhs and my family
Im broken ?! Could we not start a hige petition ?
there have been petitions. they're a very clever way for the government to be able to brush us off whilst appearing to 'do' something. If there's enough votes they will discuss this in parliament, don't actually do anything, and then proudly go this is the outcome of your petition. Just more hot air and waffle.
What we need is direct action. And able bodied people to take the action for us while we're trying to pace ourselves in a dark room.
I am a member of the Benefits and Work campaign group ( https://www.benefitsandwork.co.uk/)
which produces guides to help people with every aspect of a PIP claim. I can send you the comprehensive PIP guide if that would be of any use? I claimed PIP twice. On the second attempt I won after a year of fighting the corrupt DWP bureaucracy and received 2 letters of apology for the lies told by 2 different 'health professionals'.
Hi sorry just seen this thankyou x I actually applied again and won then won the tribual for the claim before and got back pay x however I’m still waiting for esa to assess me so I can move to lwrca if that’s what it is xx and I’m also trying to get my nhs pension
The inescapable conclusions that one has to draw from this letter and the actions of successive UK Governments are:
1. As an M.E. sufferer, the U.K. Government is not an ally.
In fact, their actions are often deliberately unhelpful, designed to slow down progress, to the extent
that they could be considered to be actively working against your best interests.
2. Consequently, the U.K. is probably the worst country in the Western World to have this disease.
3. Progress will not come via anything which is setup or initiated by U.K. Government Agencies - they
are mostly "Trojan Horses" and are not to be trusted. They merely exploit the naivety of the newly
diagnosed and the desperation of the gullible.
4. The U.K. Medical Publishing system is corrupt and, as far as it extends the PACE Trial and other
Psychological research in the field of M.E., the application of Research Integrity standards is non-
existent.
5. There will be no consequences for the wrong-dooers, because they have been acting as agents of
the U.K. Government and, as such, will be allowed to keep their generous pensions, their knighthoods and other honours.