Due to the current situation, the workshops scheduled for May and June have been cancelled and we have put study recruitment on hold. We will be in touch soon.
We are now looking for participants to take part in workshops. This is the final opportunity to share your views as part of the CONCORD study.
The purpose of the workshops will be to gather feedback on draft findings that outline different ways of coordinating care and to develop recommendations to improve these findings. The findings will help us understand how care coordination could be improved and will be taken to policy makers to inform service development for patients with rare conditions.
Who can take part?
We are currently looking for:
- Patients living with rare, ultra-rare or undiagnosed condition (18+)
- Carers or parents (18+) of children or adults living with rare conditions
- Healthcare professionals from the healthcare, social care or voluntary sector
- Charity representatives
- National commissioners
When and where do the workshops take place?
Please see below for dates and locations of each workshop:
- Thursday 7th May 2020, 10:30-13:30 (London). For: Patients (18+) and parents/carers (18+). (Workshop 1)
- Thursday 7th May 2020, 16:00-19:00 (London). For: Healthcare professionals, charity representatives and national commissioners. (Workshop 2)
- Thursday 4th June 2020, 10:00-13:00 (Birmingham). For: Healthcare professionals, charity representatives and national commissioners. (18+). (Workshop 3)
- Thursday 4th June 2020, 14:00-17:00 (Birmingham). For: Patients (18+) and parents/carers (18+). (Workshop 4)
- Thursday 25th June 2020, 11:00-14:00 (London). For: Patients (18+), parents/carers (18+), healthcare professionals, charity representatives and national commissioners. (Workshop 5).
Travel expenses will be reimbursed. Unfortunately, you are unable to bring children along to the event, but we are able to cover reasonable child care costs or cover carer replacement for patients, carers and volunteer charity representatives.
What would taking part involve?
Taking part will involve participating in a workshop, facilitated by researchers, with approximately 20 attendees. The workshop will last three hours (plus travel time).
During the workshop, you will be asked to take part in a discussion and activities with other attendees about the different ways of coordinating care, the costs of different types of coordinated care and to develop recommendations to improve the work.
Who should I contact for more information or to take part?
If you would like to take part in the workshops, or would like to ask further questions, please contact Holly Walton and Amy Simpson (email: [email protected]; Tel: 02031083068).
Depending on how many responses we receive, it is possible that not everyone who gets in touch will be able to take part.
Further information can also be found on the attached leaflets. Please share this information with others who you think might like to be involved.
Leaflet for Patients and Carers
Leaflet for Professionals