'Need for improved support and timely diagnosis' warns University of Exeter report into healthcare
Resarchers have been looking into Long Covid and ME services
A University of Exeter report has called for earlier diagnosis and 'better care' for ME and Long COVID patients.
Professor Helen Dawes from the University of Exeter Medical School said: “We see parallels between the experiences of ME and Long Covid patients, and our report indicates a need for improved support and timely diagnosis of these conditions, as well as education for health professionals.
"It’s important that patients with ME and Long Covid have access to a range of specialist services and self-management strategies to enhance their care. Considering the pressure on the NHS, digital health solutions may also offer new opportunities to support earlier diagnosis, empower patients in managing their conditions, and improve access to care.”
The University of Exeter has created an independent report published in BMJ Open based on the findings from a 2023 survey conducted by the ME Association called Count ME In. Completed by more than 10,000 people, respondents reported significant delays in the diagnosis of ME and Long COVID, low satisfaction in specialist services, and a need for improved self-management resources and better-coordinated care
Many participants also reported dissatisfaction with NHS experiences, with only 6.9 per cent of those with ME and 14.4 per cent of those with Long COVID rating their experience as good-to-excellent. Many of those said they faced significant delays in diagnosis, with some diagnosed after more than 10 years, and the majority (70 per cent) reported moderate-to-severe impacts on their lifestyles which required substantial changes to their daily activities.
Martine Ainsworth-Wells, Trustee and Campaigns Director at The ME Association, said: “We’re delighted this independent report has been published and it’s also very timely, as publication coincides with the government’s upcoming Delivery Plan on ME and chronic fatigue syndrome. The plan from the Department of Health and Social Care aims to improve attitudes, education, and service provision, and boost research into the cause and treatment of the condition. As the information in this report is very relevant to the Delivery Plan, a copy has been sent to Ashley Dalton - the minister now overseeing the final stages of preparation. Ultimately, these results will help in our efforts to educate and inform professionals who can improve the quality of life for people affected by ME and Long COVID.”
The report acknowledges potential biases in self-reporting and that the sample may overrepresent individuals who are more engaged with patient advocacy groups or have access to online platforms, potentially excluding those with limited internet access or differing healthcare experiences. Researchers recommend future research should focus on developing diagnostic measures and interventions for effective symptom management.