Healthcare Working Group

We are looking for patients and carers with experience of ME/CFS and Long Covid services in the BOB ICB (Buckinghamshire, Oxfordshire, and Berkshire West Integrated Care Boards) area to join a working group. This group will help shape the future of these services by sharing insights, ideas for improvement, and knowledge of what works well to those involved in commissioning them. We are particularly interested in hearing from individuals with Severe or Very Severe ME to better understand what care is currently being provided in the BOB region. Your collective voice is vital if we are to drive meaningful change and ensure these services meet the needs of those they support.  

We would greatly appreciate contributions from as many people as possible. If you would like to join the working group please take a moment to complete the short survey below. If you have any questions please see the Q&A provided:

Sign up to join the working group:

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County in which you live *

• Buckinghamshire
• Berkshire
• Oxfordshire

Name *

First

Last

Email *

Are you a patient or carer? *

• Patient
• Carer

If you are a carer, please complete all following questions on behalf of the patient

Age *

• 18-25
• 26-35
• 36-45
• 46-55
• 56-65
• 66+

Biological Sex *

• Female
• Male
• Other
• Do not wish to disclose

Ethnicity *

• Asian or Asian British
• Black, Black British, Caribbean or African
• Mixed or multiple ethnic groups
• White, including English, Welsh, Scottish, Northern Irish or British Irish Gypsy or Irish Traveller, Roma, Any other White background
• Other ethnic group

Severity of ME / CFS / Long Covid *

• Mild
• Moderate
• Severe
• Very Severe

Are you housebound and/or bedbound? *

• Bedbound
• Housebound
• Neither

Service experience: What has been your experience of ME/CFS/LC services in your local area? Include GP, specialist services, social care, other healthcare professionals. *

What would you consider as the ‘perfect’ pathway for people suffering from ME/CFS/LC? *

Working Group accessibility: What time/day (Mon/Weds/Thurs) would work best for you to attend a monthly meeting? *

• Monday
• Wednesday
• Thursday
• Morning
• Afternoon

Please tick all that apply

Are there any adjustments that need to be made in order for you to be able to attend a virtual meeting? For example – how long would you be able to attend a meeting without risking an increase in your symptoms? *

Please note: It is perfectly acceptable for you to turn your video off, keep the sound down or message your questions through during the meeting.

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