VOCAL and Thrive Edinburgh have today launched the powerful results of its research on carers’ experiences of mental health services. The research was conducted by Fiona Barrett and represents the first stage in a five-year project to develop carer involvement in Edinburgh’s mental health services.
The research took place between June to September 2021, and 70 carers took the time to share their views through a survey, focus groups and one-to-one interviews. All names have been changed to protect identity and no individual service is highlighted.
Sebastian Fischer, Chief Executive at VOCAL said:
“VOCAL and Thrive Edinburgh have embarked on an ambitious new project which brings together carers, the third sector and statutory services in our city to strengthen carer involvement in mental health services.
“As a carer-led organisation, VOCAL advocates for carers to have the opportunity to shape the policies that affect them and the people they care for, and this research study highlights a need to improve carers’ experiences and the policies and practices that underpin carer support within mental health settings.
“The research illustrates how treating carers as equal partners in care and enabling them to work hand-in-hand with professionals can improve outcomes for all. Whilst the research recognises examples of good practice it also highlights that further change is required to ensure carers are involved and informed and their rights are upheld.
“We would like to thank the carers who contributed to the study and our partners for their support throughout the research process. We look forward to building on the positive work that has already taken place from the Thrive collaborative, and implementing the powerful recommendations which place carers at the helm.”
Challenging circumstance of carers
- 89% of carers felt the carer support and information they received could be improved.
- 86% felt they had never, or only sometimes, been given sufficient information and support from professionals to manage risks associated with the person they care for.
- 57% reported a need for more support to help them manage risk related to the person they care for condition.
“I have only recently been informed of a support service for carers even though I have been caring for a person with a mental health condition for a number of years. I feel my role as a carer and the strain it has put on me has not really been taken into consideration.”
Poor attitudes and service accountability
Of those who reported negative experiences with mental health professionals, 52% felt professionals had not taken their caring role seriously and were not interested in them, or what they had to say.
Many carers reported a strong sense of feeling distanced from mental health professionals and of feeling judged, abandoned or ignored by them. Service boundaries appeared to compound this feeling of distance and lack of accountability. Some found services could be inflexible and inaccessible.
Lack of carer recognition and involvement
Many carers mentioned the impact of caring for someone with a mental illness, especially if they felt unknowledgeable about mental illness and its treatment. The majority felt strongly they could have been better supported whilst undertaking this challenging role. Carers reported professionals had a poor understanding of what the role entailed, the impact it had, and were unaware how best to support them.
“There was no support for me really – around that time I ended up having a month off work as it was all a bit too much really.”
The power of good support and engagement
Carers welcomed support when they found it, and experienced the benefits of being linked to dedicated carer support services which they valued.
Most carers (90%) would like professionals to treat them with more respect, compassion and honesty. Many carers would like professionals to treat them as equal partners in care, with 88% citing the need for improved, regular communication between professionals and carers.
It is hoped this research will help shape future service and system improvements in the area of carer support and engagement. Based on these findings, the authors make the following recommendations:
- Strengthen carers’ rights approaches at all levels (service, team and professional), including the ability to seek redress where rights are not met.
- Promote cultural change through professional development activities to ensure carers are treated as equal partners in the delivery of care and provided with sufficient knowledge to enable them to provide effective care.
- Encourage mental health professionals to identify and refer carers for support at the earliest opportunity. Mental health professionals should have an awareness of why such support is necessary.
- Improve carer engagement in hospital discharge (a legal requirement). Carers should be better supported during the transition from hospital to home.
We look forward to working with carers and mental health services in Edinburgh as part of our project to improve carer identification, support and engagement.