Ensuring The Right Help for Children with M.E.

Action for M.E. is a nationwide charity supporting individuals affected by ME/CFS. We are launching a new children’s service and looking for feedback regarding what services would be most useful to children, parents and professionals.

We are contacting a range of professionals, including those who work directly with children and young people diagnosed with ME/CFS and those in wider services. Even if you do not provide a service specifically to those with ME/CFS you may encounter people with this illness sometimes misdiagnosed with other conditions such as growing pains, psychosomatic illness, school phobia or even fabricated illness.

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* 1. What is your role in working with children and young people?

Health/Social work professional in CFS/ME service

Health professional in other role

Social worker in other role

Other (please specify)

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* 2. Have you worked with any children/young people who have experienced ME/CFS?

Yes, regularly.

Yes, occasionally.

Not sure.

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* 3. Would you feel confident in supporting a child/family who are experiencing ME/CFS?

Yes, this is a core part of my role

Yes, I feel I have access to the right resources and support to help me do this when required

No, I would need to research this myself before offering support to others

No, I would not know where to start

Other (please specify)

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* 4. Own learning/development needs.
How can Action for ME support your professional development and learning around working with children and young people with ME/CFS? Please rate/prioritise which of the following you would find most helpful.

Please rank in order of importance

Written information on understanding the condition and the impact on the lives of people of children and young people.

Video presentations from other professionals on understanding the condition and the impact on the lives of people of children and young people

Webinar or interactive learning resources on understanding the condition and the impact on the lives of people of children and young people

Providing training events specifically around working with children and young people.

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* 5. Access to resources.
How can Action for ME provide resources that you can use with a child or young person and others they have contact with? Please rate/prioritise which of the following you would find most helpful.

Please rank in order of importance

Resources on understanding the condition and the impact on the lives of people of children and young people

Information from professionals on understanding the condition and the impact on the lives of people of children and young people

Resources designed for children, young people and families on understanding the condition

Resources for teachers and education on understanding the condition and the impact on the lives of people of children and young people

The opportunity to speak to other young people and hear about their experiences.

Information about other services

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* 6. Support with individual cases/problems
How can Action for ME support you with individual issues you experience in your work? Please rate /prioritise which of the following you would find most helpful

Please rank in order of importance

Access to supervision with recognised experts through telephone or Skype

On-line confidential forums in which to discuss anonymised cases and professional issues

Access to an advisor in Action for ME who can give signpost and advise on resources

Involvement of Action for ME on the development of services and good practice.

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* 7. Networking with other professionals.
How can Action for ME link you with other professionals so that you can share experience? Please rate/prioritise which of the following you would find most helpful.

Please rank in order of importance

The opportunity to network in person with other professionals at specific events

The opportunity to virtually network with other professionals.

A directory of professionals who have expertise in this area

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* 1. What is your role in working with children and young people?

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* 2. Have you worked with any children/young people who have experienced ME/CFS?

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* 3. Would you feel confident in supporting a child/family who are experiencing ME/CFS?

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* 4. Own learning/development needs.How can Action for ME support your professional development and learning around working with children and young people with ME/CFS? Please rate/prioritise which of the following you would find most helpful.Please rank in order of importance

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* 5. Access to resources.How can Action for ME provide resources that you can use with a child or young person and others they have contact with? Please rate/prioritise which of the following you would find most helpful.Please rank in order of importance

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* 6. Support with individual cases/problems How can Action for ME support you with individual issues you experience in your work? Please rate /prioritise which of the following you would find most helpfulPlease rank in order of importance

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* 7. Networking with other professionals.How can Action for ME link you with other professionals so that you can share experience? Please rate/prioritise which of the following you would find most helpful.Please rank in order of importance

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* 8. Any other comments regarding how Action for ME can support you in your work in this area

* 4. Own learning/development needs.
How can Action for ME support your professional development and learning around working with children and young people with ME/CFS? Please rate/prioritise which of the following you would find most helpful.

Please rank in order of importance

* 5. Access to resources.
How can Action for ME provide resources that you can use with a child or young person and others they have contact with? Please rate/prioritise which of the following you would find most helpful.

Please rank in order of importance

* 6. Support with individual cases/problems
How can Action for ME support you with individual issues you experience in your work? Please rate /prioritise which of the following you would find most helpful

Please rank in order of importance

* 7. Networking with other professionals.
How can Action for ME link you with other professionals so that you can share experience? Please rate/prioritise which of the following you would find most helpful.

Please rank in order of importance