Earlier this year MRKH Connect hosted an MSc student placement from King’s College London from their Health Psychology program. The student, worked closely with Connect and their supervisor Dr Susan Carroll and we collectively decided on a study centred on Barriers to Accessing care. The study, focused on UK healthcare, and as such the UK MRKH community, is summarised below and the outcomes are extremely interesting for us, and for the community, and we expect to expand on this study through another placement with King’s College very soon. Watch this space.
We thank Ruveyda (also known as Ruby) for her work and engagement during this placement.
Barriers in Accessing Care: Summary of Findings – Ruveyda Aki, MSc Health Psychology | King’s College London
This is a summary of all findings and observations we discovered while exploring the barriers to accessing care. Observations are based on my interviews with women from the MRKH community and the results from the 30 amazing, helpful women who have completed our survey!
Access to Support
MRKH Connect initially approached me with their observations regarding patients experiences with various barriers in accessing care. To explore these barriers, we decided to first interview some of MRKH Connect advocates about their experiences with MRKH and accessing care. Then we proceeded with creating an online survey where we aimed to reach more women with MRKH and understand their thoughts and perspectives about the problems in accessing care.
Five advocates were interviewed and as a result, 5 major themes were identified in barriers to accessing care.
- Lack of Awareness
- Lack of Knowledge and Attitude
- Limited Resources
- Quality of Social Support
- Lack of simplicity
These themes helped us create the pillars of our survey questions. Thanks to the 30 women who completed the survey we were able to explore these themes in more depth.
2. Survey Results and Evaluations
Location & Limited Resources: Patient experiences changed depending on the location they lived in. Living further meant more time and money spent on accessing care due to the lack of support available locally. Patients that lived further from treatment centres had GPs that were less likely to know about MRKH, as a result, these prolonged diagnoses.
Lack of Awareness: Results showed that all thirty participants complained about the lack of awareness and knowledge of GPs and healthcare specialists
The barriers mentioned so far are the shortcomings of the healthcare system because these problems could be solved by educating healthcare professionals or increasing MRKH treatment centres.
Psychological Considerations: Shame and low self-esteem were identified as barriers in asking for care and support. Patients suggested that these were caused by social stigmas, cultural norms, religious expectations, and a lack of healthy communication in families. Social norm issues were identified due to the current fertility expectations imposed on women.
These barriers may be harder to overcome as they require a change in the mindset of patients, families, and the general society.
Offering immediate counselling in the diagnosis appointment may help but half of the patients that completed the survey were not offered formal psychological support when they were diagnosed. Improvement in this could reduce most of the barriers in accessing care.
Support Groups and Charities: These organizations seem to be doing most of the work like providing psychological support and creating a safe community. They provide patients support to get the right referrals to medical care and educate them about MRKH. Most patients were happy with the support charities like MRKH Connect was providing. One improvement they proposed was an increase in frequency in chats and non-infertility related content.
Perhaps healthcare systems could use a similar route to charities to ensure that everyone no matter where they live can access care.
3. Future Steps
Considering these barriers from the point of view of health professionals would be very efficient in further understanding the roots of these problems. This would make sure to cover any aspects that were not yet uncovered in our research. Once the data for both perspectives are explored solutions can be created that encompass all areas.