Capturing Compassionate Care Research – The CCARE Study

Measuring patient experiences via a questionnaire to ensure the healthcare they receive is delivered compassionately

It is important that healthcare is delivered compassionately, so there is a need to capture patient experiences to check that the care they received was compassionate. The Compassionate Care Measure (CCM) is a new questionnaire that aims to measure these experiences. This project aims to check that this measure is of good enough quality to be used to improve services and patient care.

As compassionate care has been identified as a key priority for NHS services, this measure will be relevant to a variety of different healthcare settings. We would like to include people with Motor Neurone Disease in this study to include their healthcare experiences in the development of the measure.

What does taking part involve?

There are two phases of recruitment. The first phase of recruitment involves completing an online questionnaire which takes approximately 20-25 minutes to complete. Here is a link to this questionnaire:

In the second phase of recruitment, participants will be asked to complete an online questionnaire which takes approximately 20-25 minutes to complete and they will also be invited to provide their email address if they are happy to receive a brief follow-up questionnaire which takes approximately 5 minutes to complete. The link to this online questionnaire will be shared when it is available following the completion of the first phase of recruitment.

If participants provide their email address, they will be entered into a draw to win an Amazon voucher.

Study location


Who can take part?

• People with MND, family members and carers

• Aged 18 or over

• Have attended a healthcare appointment within the past month. This could have been face to face, or by phone or video call.

How can I take part?

Participants can take part by completing the online questionnaire, accessible by clicking the orange button on this page.

If you have any questions about this study, please contact Ellen Huish, Clinical Psychologist in Training by emailing or on 07815 657139.



Expiry date: 01/10/2021

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262