While ambition, thinking big and looking to what other countries are doing is good, I think what's missing is how to improve services from the NHS and social care that fits into how they currently operate. For instance, adding ME to the list of "long-term conditions" that generate a QOF payment for GP surgeries to provide regular follow-up (such as annual checks). Requiring all current ME services to be doctor-led. Training specialist nurses a la diabetes, cancer, dementia and many other conditions, but also just making sure housebound ME patients are under the District Nursing team. Instead of talking about 'care in the community' and Marie Curie nurses (a charity), this needs to be much more integrated into Social Care's remit. Currently I feel it's barely on their radar as the type of care and services pwME need are far removed from what they provide. There needs to be a much more integrated pathway between the NHS and Social Care so that patients can be referred easily between the two, although that's a wider issue.
Thanks for the update. Another area in which pwME need help is in the area of claiming benefits. I did a FOI request in 2018 which revealed that 50% of pwME were having their PIP claims turned down. The DWP has a long history of using punitive measures and not following it's own rules such as asking for medical evidence when making a decision on a claim to deny people with fluctuating conditions their benefits. The DWP needs to be educated about the nature of ME so it cannot continue denying people benefits.
Sadly, the DWP has a long history of breaking the law and ignoring directives to improves it's safeguarding systems as revealed by the UN in its April 2024 report into the UK.
I am a member of the benefit and work campaign group and have a long history of campaigning on these issues which need to be addressed as so many people with ME cannot work.
This is something the ME community needs to have a dialogue with the government and DWP about. DWP decision makers need to be educated about ME as do its so called 'health professionals' who conduct assessments. I received 2 letters of apology from ATOS due to the lies told by an 'OT' and a 'nurse' in my assessments for PIP. They both said that because I could walk 200 metres after feeling the muscles in my legs! They stated that I had no mobility problems deliberately ignoring the medical evidence which I had provided about PEM and my other symptoms.
This medical abuse of pwME by DWP staff has to be challenged and stopped. I don't understand why the national ME charities barely mention benefits as an important issue to be taken up. While we wait for improvements in care/treatments many pwME need money to live on after losing their jobs due to ill health.
Agreed! I found the process so excluding that I was unable to complete it because I knew the energy and stress involved would make me crash. It’s not just the initial application, it’s that you have to be ready to go through an appeals process as well because it’s widely known in our community that the DWP automatically reject most applications from pwME. And don’t even get me started that you often have to rely on the very healthcare ‘professionals’ that are gaslighting you to ‘help’ with your application…
Thank you - as a mother of a daughter with ME - and as someone who worked delivering clinical research for several decades - this sums up everything l have been looking & hoping for in an NHS plan. Do let us know how we can help support you in this difficult process.
Well said. This is a clear and thoughtful article with clear objectives that are desperately needed for those with ME. That you have an understanding and are directly addressing the needs of those with severe ME is wonderful to see.
There are very few ME specialist doctors across the NHS. If the NICE Guidelines are going to be implemented and , be effective, we need at least one ME doctor per health authority/ hospital and community in order for patients to access care from a medical professional (& provider) who understands their condition. And supporting that Doctor there needs to be a dedicated team of health care professionals including nurses, physiotherapists, dietitians, counsellors and pharmacists looking after these patients. Currently GP’s have nowhere to refer ME patients to, so everything falls apart at this first hurdle. And for the severe ME patients who can’t travel to see a doctor/ healthcare provider each provider needs to provide a service that goes to the patient at home. Currently ME patients pay hundreds of pounds to access care in the private sector. Some of which is regulated and some isn’t. The time has come for PWME to have good quality healthcare (regulated and managed) on the NHS. And not be left hanging, with a GP who may or may not be understanding or sympathetic and who might be disinterested or might be willing but unable to provide appropriate ongoing care.
I totally agree with the comments made by Sue and Emma.
This is probably the area that I’m most passionate about: having qualified staff who KNOW ME!
I left a suggestion to the #ThereForME team about bypassing the NHS entirely and instead working towards a charity model, similar to hospices, to provide inpatient care in an environment that is required by pwME.
I also suggested that community teams visit the homes of those who are severe/very severe and unable to make it to the centre/clinic.
Obviously, as an ex-nurse, I would love to see this happen within every NHS Trust/ICB so that all pwME have a service that accommodates them.
Unfortunately, the current NHS is neither holistic nor flexible enough for the needs of pwME. I can’t help but wonder if we’re wasting time and effort trying to bend the NHS to our needs.
We’ve already seen that, despite a very thorough protocol being written for the care of pwsevereME at Devon Hospital, where Maeve attended, it has already become a paper exercise with no practical application.
I am not being negative, but I hope to be more pragmatic. I first nursed an ME patient around 1994. That was 30 years ago, and attitudes and care within the NHS have not changed.
I am merely asking the question: can and will the NHS, including medical schools, actually deliver the training, care, and treatment we so desperately need at a national level?
In October, I was admitted for gut rest and TPN feeding as a preventative measure against malnutrition due to MCAS. The admission was fully supported by my GP, Dr. Weir, and my dietitian.
After 16 very challenging days, I was discharged with a diagnosis of severe constipation and told that in no uncertain terms would I ever get TPN at the Royal Bournemouth Hospital. The reason I am not dying right now is because I eat despite the severe abdominal pain, which is literally 24/7.
I think the proposed goals by #ThereForME are very articulate and much needed. My concern is, can our broken NHS ever deliver what we so desperately need? 💙
Thank you so much for this and everything you do. For me in the first place it’s more a case of what must not be included ie anything related to bps dogma, which would undermine completely all the positive attempts to educate and make appropriate health service provision. Having submitted to the consultation which set me back even more , I was very concerned to see in the summary of responses significant space still given to obvious biopsychosocial/psychosocial proponents, and suggestions like “more individual recovery stories “ which is a wholly unscientific approach that has and continues to produce misleading information that is yet taken up and even used as a basis for “treatment” programs by some health services! I am very concerned such inclusions may reflect an intention to keep including bps material regardless of evidence, NICE etc, due to political pressure and powerful position of SW. Anything that appears to accept any bps dogma will
allow health care to continue as many are, ignoring NICE and biomedical evidence, and suck further v limited funding away from biomedical. I just think nothing will
change and all our massive efforts will
be wasted, yet again, unless there is a categorical statement, before final plan, that NO bps or similar material whatsoever will be included. Also education should include summaries of existing biomedical research especially demonstrating energy metabolism dysfunction and biological abnormalities in PEM etc - such as MERUK have available. Health professionals need to see science to believe. Or we could end up with a tick
box exercise of more ME/CFS clinics and “specialists “ so they can say there’s provision, but that are still wedded to the ignorant theories and attitudes.- just like before
Thankyou a lifeline thinking GP s bought up to date with ME/Long Covd frustrated by lack of empathy by them . Having to prove it as an illness I have been houseboy 4 yrs now thankyou for this encouraging article 🙂
While ambition, thinking big and looking to what other countries are doing is good, I think what's missing is how to improve services from the NHS and social care that fits into how they currently operate. For instance, adding ME to the list of "long-term conditions" that generate a QOF payment for GP surgeries to provide regular follow-up (such as annual checks). Requiring all current ME services to be doctor-led. Training specialist nurses a la diabetes, cancer, dementia and many other conditions, but also just making sure housebound ME patients are under the District Nursing team. Instead of talking about 'care in the community' and Marie Curie nurses (a charity), this needs to be much more integrated into Social Care's remit. Currently I feel it's barely on their radar as the type of care and services pwME need are far removed from what they provide. There needs to be a much more integrated pathway between the NHS and Social Care so that patients can be referred easily between the two, although that's a wider issue.
Thanks for the update. Another area in which pwME need help is in the area of claiming benefits. I did a FOI request in 2018 which revealed that 50% of pwME were having their PIP claims turned down. The DWP has a long history of using punitive measures and not following it's own rules such as asking for medical evidence when making a decision on a claim to deny people with fluctuating conditions their benefits. The DWP needs to be educated about the nature of ME so it cannot continue denying people benefits.
Sadly, the DWP has a long history of breaking the law and ignoring directives to improves it's safeguarding systems as revealed by the UN in its April 2024 report into the UK.
I am a member of the benefit and work campaign group and have a long history of campaigning on these issues which need to be addressed as so many people with ME cannot work.
I totally agree! Also, the questions on the form do not take into account people with energy limiting illnesses.
This is something the ME community needs to have a dialogue with the government and DWP about. DWP decision makers need to be educated about ME as do its so called 'health professionals' who conduct assessments. I received 2 letters of apology from ATOS due to the lies told by an 'OT' and a 'nurse' in my assessments for PIP. They both said that because I could walk 200 metres after feeling the muscles in my legs! They stated that I had no mobility problems deliberately ignoring the medical evidence which I had provided about PEM and my other symptoms.
This medical abuse of pwME by DWP staff has to be challenged and stopped. I don't understand why the national ME charities barely mention benefits as an important issue to be taken up. While we wait for improvements in care/treatments many pwME need money to live on after losing their jobs due to ill health.
Agreed! I found the process so excluding that I was unable to complete it because I knew the energy and stress involved would make me crash. It’s not just the initial application, it’s that you have to be ready to go through an appeals process as well because it’s widely known in our community that the DWP automatically reject most applications from pwME. And don’t even get me started that you often have to rely on the very healthcare ‘professionals’ that are gaslighting you to ‘help’ with your application…
Thank you - as a mother of a daughter with ME - and as someone who worked delivering clinical research for several decades - this sums up everything l have been looking & hoping for in an NHS plan. Do let us know how we can help support you in this difficult process.
Well said. This is a clear and thoughtful article with clear objectives that are desperately needed for those with ME. That you have an understanding and are directly addressing the needs of those with severe ME is wonderful to see.
Good luck with the meeting today!
There are very few ME specialist doctors across the NHS. If the NICE Guidelines are going to be implemented and , be effective, we need at least one ME doctor per health authority/ hospital and community in order for patients to access care from a medical professional (& provider) who understands their condition. And supporting that Doctor there needs to be a dedicated team of health care professionals including nurses, physiotherapists, dietitians, counsellors and pharmacists looking after these patients. Currently GP’s have nowhere to refer ME patients to, so everything falls apart at this first hurdle. And for the severe ME patients who can’t travel to see a doctor/ healthcare provider each provider needs to provide a service that goes to the patient at home. Currently ME patients pay hundreds of pounds to access care in the private sector. Some of which is regulated and some isn’t. The time has come for PWME to have good quality healthcare (regulated and managed) on the NHS. And not be left hanging, with a GP who may or may not be understanding or sympathetic and who might be disinterested or might be willing but unable to provide appropriate ongoing care.
I totally agree with the comments made by Sue and Emma.
This is probably the area that I’m most passionate about: having qualified staff who KNOW ME!
I left a suggestion to the #ThereForME team about bypassing the NHS entirely and instead working towards a charity model, similar to hospices, to provide inpatient care in an environment that is required by pwME.
I also suggested that community teams visit the homes of those who are severe/very severe and unable to make it to the centre/clinic.
Obviously, as an ex-nurse, I would love to see this happen within every NHS Trust/ICB so that all pwME have a service that accommodates them.
Unfortunately, the current NHS is neither holistic nor flexible enough for the needs of pwME. I can’t help but wonder if we’re wasting time and effort trying to bend the NHS to our needs.
We’ve already seen that, despite a very thorough protocol being written for the care of pwsevereME at Devon Hospital, where Maeve attended, it has already become a paper exercise with no practical application.
I am not being negative, but I hope to be more pragmatic. I first nursed an ME patient around 1994. That was 30 years ago, and attitudes and care within the NHS have not changed.
I am merely asking the question: can and will the NHS, including medical schools, actually deliver the training, care, and treatment we so desperately need at a national level?
In October, I was admitted for gut rest and TPN feeding as a preventative measure against malnutrition due to MCAS. The admission was fully supported by my GP, Dr. Weir, and my dietitian.
After 16 very challenging days, I was discharged with a diagnosis of severe constipation and told that in no uncertain terms would I ever get TPN at the Royal Bournemouth Hospital. The reason I am not dying right now is because I eat despite the severe abdominal pain, which is literally 24/7.
I think the proposed goals by #ThereForME are very articulate and much needed. My concern is, can our broken NHS ever deliver what we so desperately need? 💙
Thank you so much for this and everything you do. For me in the first place it’s more a case of what must not be included ie anything related to bps dogma, which would undermine completely all the positive attempts to educate and make appropriate health service provision. Having submitted to the consultation which set me back even more , I was very concerned to see in the summary of responses significant space still given to obvious biopsychosocial/psychosocial proponents, and suggestions like “more individual recovery stories “ which is a wholly unscientific approach that has and continues to produce misleading information that is yet taken up and even used as a basis for “treatment” programs by some health services! I am very concerned such inclusions may reflect an intention to keep including bps material regardless of evidence, NICE etc, due to political pressure and powerful position of SW. Anything that appears to accept any bps dogma will
allow health care to continue as many are, ignoring NICE and biomedical evidence, and suck further v limited funding away from biomedical. I just think nothing will
change and all our massive efforts will
be wasted, yet again, unless there is a categorical statement, before final plan, that NO bps or similar material whatsoever will be included. Also education should include summaries of existing biomedical research especially demonstrating energy metabolism dysfunction and biological abnormalities in PEM etc - such as MERUK have available. Health professionals need to see science to believe. Or we could end up with a tick
box exercise of more ME/CFS clinics and “specialists “ so they can say there’s provision, but that are still wedded to the ignorant theories and attitudes.- just like before
Thankyou a lifeline thinking GP s bought up to date with ME/Long Covd frustrated by lack of empathy by them . Having to prove it as an illness I have been houseboy 4 yrs now thankyou for this encouraging article 🙂