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Healthwatch Lancashire contributes to national picture of ME/CFS patient experiences

Healthwatch Lancashire has published a report that highlights local issues for residents of Lancashire and contributes to a national picture of ME/CFS patient experiences.

Healthwatch Trafford contacted Healthwatch Lancashire with the results of a national survey they had completed with patients living with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), to share some of the feedback they received from residents from Lancashire.

Considering Trafford’s feedback, and through concerns Healthwatch Lancashire had heard from its own community engagement regarding people living with the condition, they decided to probe the topic further.

In total, 48 people shared their experiences with the key findings from the report showing that:

•Over half (53%) of people said their GP is supportive but not knowledgeable about their condition. Nearly a quarter (24%) of people said their GP is neither knowledgeable nor supportive.

•The large majority of people (74%) said they would not trust their GP or were unsure whether they would. Around a quarter (26%) said they would trust their GP to provide them with information on their condition.

•The large majority of people (82%) said they had been unable to access or had been refused any tests or treatments.

Sheralee Turner-Birchall, Chief Executive at Healthwatch Lancashire, said: “Healthwatch Lancashire is committed to listening to patients and members of the public in Lancashire and making sure their views and experiences are heard by those who run, plan and regulate health and social care services.

“This report helps us to identify areas where Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS services, or access to these services, can be improved based on the views of those who are using them; not just from the general public but also from seldom-heard communities.”

The report ‘ME/CFS Report’ can be read and downloaded online at www.healthwatchlancashire.co.uk/reports under the ‘Special Reports’ section.