Helping parents of children and young people with M.E. Survey

Question Title

* 1. At the very beginning, (perhaps even before a diagnosis of M.E./CFS), how did first you become aware/suspicious it might be M.E./CFS
(Tick all that apply)

G.P.

Internet

Friend

Family

Media

Other health professional

Other (please specify)

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* 2. Where did you go first for information and support?

G.P.

Internet

Friend

Family

Media

Other health professional

Other (please specify)

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* 3. Was the information you first received from the above sources Helpful
(Use the Slider below: Left side = not at all helpful, Right side = this information was essential)

Clear

i We adjusted the number you entered based on the slider’s scale.

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* 4. In your own words, how would you describe this early stage, trying to get information and support?

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* 5. Think about what you find useful now, (or would find useful now, if it existed).
Which of the following might be something you'd want to use for information and support?

	Not at all useful	Partially Useful	Very useful	Essential
An annual conference aimed at parents	An annual conference aimed at parents Not at all useful	An annual conference aimed at parents Partially Useful	An annual conference aimed at parents Very useful	An annual conference aimed at parents Essential
A local, facilitated support group that meets every 4-6 months	A local, facilitated support group that meets every 4-6 months Not at all useful	A local, facilitated support group that meets every 4-6 months Partially Useful	A local, facilitated support group that meets every 4-6 months Very useful	A local, facilitated support group that meets every 4-6 months Essential
An online forum for parents	An online forum for parents Not at all useful	An online forum for parents Partially Useful	An online forum for parents Very useful	An online forum for parents Essential
Parents who have received training to offer support on the phone, talking about their experience	Parents who have received training to offer support on the phone, talking about their experience Not at all useful	Parents who have received training to offer support on the phone, talking about their experience Partially Useful	Parents who have received training to offer support on the phone, talking about their experience Very useful	Parents who have received training to offer support on the phone, talking about their experience Essential
Literature specifically on being a parent of a child with M.E.	Literature specifically on being a parent of a child with M.E. Not at all useful	Literature specifically on being a parent of a child with M.E. Partially Useful	Literature specifically on being a parent of a child with M.E. Very useful	Literature specifically on being a parent of a child with M.E. Essential
Literature that can be read and understood by a child affected by M.E.	Literature that can be read and understood by a child affected by M.E. Not at all useful	Literature that can be read and understood by a child affected by M.E. Partially Useful	Literature that can be read and understood by a child affected by M.E. Very useful	Literature that can be read and understood by a child affected by M.E. Essential
A matching service that pairs you with another parent who has experienced the issue you are facing	A matching service that pairs you with another parent who has experienced the issue you are facing Not at all useful	A matching service that pairs you with another parent who has experienced the issue you are facing Partially Useful	A matching service that pairs you with another parent who has experienced the issue you are facing Very useful	A matching service that pairs you with another parent who has experienced the issue you are facing Essential

We're sure you'll have ideas that aren't listed above, and we want to hear them.
Please tell us; what do you want to see?

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* 6. As a parent, which areas would you like a charity like Action for M.E. to concentrate on improving?

(Please rank these with 1 being the most urgently needed)

Support with Healthcare

Support with Education

Support with Social Care

Support with Coping Strategies (for you, the parent)

Support with Coping Strategies (for children with M.E.)

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* 7. As you thought about the last question, was anything missing? Is there some other area of support that needs improvement?

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* 8. How would you prefer to access help from a charity like Action for M.E.

	I would never use this	I'd be unlikely to use this	I would consider using this	I would like to use this	I would LOVE to use this
Over the phone	Over the phone I would never use this	Over the phone I'd be unlikely to use this	Over the phone I would consider using this	Over the phone I would like to use this	Over the phone I would LOVE to use this
Video conferencing (like Skype or other web-cam based systems)	Video conferencing (like Skype or other web-cam based systems) I would never use this	Video conferencing (like Skype or other web-cam based systems) I'd be unlikely to use this	Video conferencing (like Skype or other web-cam based systems) I would consider using this	Video conferencing (like Skype or other web-cam based systems) I would like to use this	Video conferencing (like Skype or other web-cam based systems) I would LOVE to use this
An online, text based chatroom	An online, text based chatroom I would never use this	An online, text based chatroom I'd be unlikely to use this	An online, text based chatroom I would consider using this	An online, text based chatroom I would like to use this	An online, text based chatroom I would LOVE to use this
Written materials and leaflets	Written materials and leaflets I would never use this	Written materials and leaflets I'd be unlikely to use this	Written materials and leaflets I would consider using this	Written materials and leaflets I would like to use this	Written materials and leaflets I would LOVE to use this
Emailed questions and answers	Emailed questions and answers I would never use this	Emailed questions and answers I'd be unlikely to use this	Emailed questions and answers I would consider using this	Emailed questions and answers I would like to use this	Emailed questions and answers I would LOVE to use this
Organised meet-ups	Organised meet-ups I would never use this	Organised meet-ups I'd be unlikely to use this	Organised meet-ups I would consider using this	Organised meet-ups I would like to use this	Organised meet-ups I would LOVE to use this

Are there any other ways you'd like to receive help and support?

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* 1. At the very beginning, (perhaps even before a diagnosis of M.E./CFS), how did first you become aware/suspicious it might be M.E./CFS (Tick all that apply)

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* 2. Where did you go first for information and support?

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* 3. Was the information you first received from the above sources Helpful(Use the Slider below: Left side = not at all helpful, Right side = this information was essential)

Question Title

* 4. In your own words, how would you describe this early stage, trying to get information and support?

Question Title

* 5. Think about what you find useful now, (or would find useful now, if it existed). Which of the following might be something you'd want to use for information and support?

Question Title

* 6. As a parent, which areas would you like a charity like Action for M.E. to concentrate on improving?(Please rank these with 1 being the most urgently needed)

Question Title

* 7. As you thought about the last question, was anything missing? Is there some other area of support that needs improvement?

Question Title

* 8. How would you prefer to access help from a charity like Action for M.E.

Question Title

* 9. Please take a moment. Do you have any other ideas you want the consultation group to think about that would help parents?

* 1. At the very beginning, (perhaps even before a diagnosis of M.E./CFS), how did first you become aware/suspicious it might be M.E./CFS
(Tick all that apply)

* 3. Was the information you first received from the above sources Helpful
(Use the Slider below: Left side = not at all helpful, Right side = this information was essential)

* 5. Think about what you find useful now, (or would find useful now, if it existed).
Which of the following might be something you'd want to use for information and support?

* 6. As a parent, which areas would you like a charity like Action for M.E. to concentrate on improving?

(Please rank these with 1 being the most urgently needed)