Responses

PDF
Letter
Research priority setting by young people with rheumatic musculoskeletal disease
Compose Response

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
Author Information
First or given name, e.g. 'Peter'.
Your last, or family, name, e.g. 'MacMoody'.
Your email address, e.g. higgs-boson@gmail.com
Your role and/or occupation, e.g. 'Orthopedic Surgeon'.
Your organization or institution (if applicable), e.g. 'Royal Free Hospital'.
Statement of Competing Interests

PLEASE NOTE:

  • Responses are moderated before posting and publication is at the absolute discretion of BMJ, however they are not peer-reviewed
  • Once published, you will not have the right to remove or edit your response. Removal or editing of responses is at BMJ's absolute discretion
  • If patients could recognise themselves, or anyone else could recognise a patient from your description, please obtain the patient's written consent to publication and send them to the editorial office before submitting your response [Patient consent forms]
  • By submitting this response you are agreeing to our full [Response terms and requirements]

Vertical Tabs

Other responses

Jump to comment:

  • Published on:
    RheumMates is already there

    I was very pleased to read this letter on involving children and young people (CYP) which is so important.

    RheumMates (https://www.facebook.com/groups/rheumates/) is a group which was already set up together with young people with rheumatological conditions (based on the highly successful NeoMates model, which provides parent peer support for neonatal unit parents) for this purpose.
    This came about after we presented NeoMates at the Royal College of Paediatrics and Child Health annual conference at the same time that an inspirational young person presented her work on setting up Raiise (https://raiise.co.uk) to improve care and provide support for young people with "invisible illnesses".
    It is a place where CYP can chat to each other safely, knowing that everyone in the group has a common link.
    It is also a source of expert knowledge and information.

    To complement it, we also set up RheumMatesParents where parents can also chat, gaining the peer support that the NeoMates parents have had for many years.

    I wonder if these could in some way be combined to help improve peer support and patient engagement?

    Conflict of Interest:
    None declared.