ME North East services are shaped by what you our members tell us

It is a while since we asked you for an update via a questionnaire – and we feel the time is right now to help us to focus on our priorities that will bring you the greatest benefit and to identify possible funding streams to achieve our goals.

The last few questions on this sheet are especially for Teesside members – to help us to put together a case of need to support the bid for dedicated funds for local services – this evidence is crucial. Please circle your answers.

Part One

Q1 In which area of the region do you live?
North of Tyne
South of Tyne
Durham/Darlington
Cumbria
Tees

Q2 Are you:
Male
Female

Q3 How old are you?
0–16
17–25
26–35
36–45
46–55
56–65
66+

Q4 How long have you had ME?
1-3 yrs
4-6yrs
7-10years
10yrs+

Q5 How severe do you consider your ME?
Mild
Moderate
Severe
Very Severe

Q6 Four CFS/ME clinics operate across the North East – have you been referred to your local team?
YES
NO
Yes – but waiting for appointment

Q7 If seen by the team, who did you see? (circle all that apply)
Physician
Psychiatrist
Psychologist
Physiotherapist
Occupations therapist
Other (please specify) ……………………………….

Q8 If seen, how helpful did you find the service?
Very Helpful
Helpful
Not Helpful
Made symptoms worse

Q9 Most teams only have the services of those listed in Q7.
What other services do you think should be available?
Nutrition
Dietician
Counsellor
Social Worker
Any other services please specify:

Any additional comments would be very helpful

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Part Two
As funding our work is becoming harder – we may need to review the range of services we presently deliver. In your opinion what key areas should ME North East focus on? (Please mark all those that apply – prioritise if you wish)

Facilitate speakers and demonstrations for alternative treatments
Home visits and advocacy for young people and families
Home visits and advocacy for the severely affected
Information gathering and circulation (via newsletters and internet)
Monitor and evaluate the CFS/ME services delivered across the region
Provide access to complimentary services (ie; counselling and stress relief)
Provide benefits advocacy and support
Raising awareness and delivering training on the needs of ME to service providers (in health, education and social services)
Raising awareness with the general public via media coverage, fundraising events, and activities
Support and enable research into the cause and cure of ME
Telephone help-line for support, understanding, help and information
Working with the Northern CFS/ME Clinical Network and local clinical teams to improve and increase services to patients

For members in the Teesside Area ONLY

Q1 Does your GP recognise ME/CFS?
YES
NO

Q2 Have you been offered a referral for your ME?
YES
NO

Q3 If Yes – where were you referred to? – please give details

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Q4 If you were offered a referral to The Leeds Fatigue Clinic would you be able/well enough to attend?
YES
NO

Q5 In your opinion should there be a local CFS/ME service in Teesside?

YES
NO

If YES, please give reason:

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Any additional comments would be very helpful

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We would like to thank you for your time – it is much appreciated. Please return the completed questionnaire as soon as possible.