Women’s Healthcare Survey reveals ‘medical ableism’
Chronic Illness Inclusion has responded to the Department for Health and Social Care’s inquiry into Women’s health and well-being in England.
To ensure that our organisational submission reflected the concerns of women with Energy Limiting Chronic Illnesses we launched our own survey.
Over one thousand women responded, with hundreds giving details of the difficulties they have experienced in getting diagnoses, treatment and support. They reflected a culture of disbelief and dismissal. Many of the responses were heartbreaking to read. Over the weeks to come we will begin to share some of these responses so that women’s voices, which are too often silenced, can be heard and amplified.
Lead author, Catherine Hale, writes:
We produced this report because we know that disabled people living with poorly understood and under-diagnosed conditions live with trauma that blights and limits their lives. And no one, outside of our community, is talking about it.
This trauma doesn’t come from our health condition itself, although ELCI is very debilitating.
It doesn’t even come from the mental health impact of living with a long term health condition, although this is keenly felt.
This trauma, perhaps the biggest within our community, is one that has no official name and is never spoken of among healthcare professionals or healthcare providers. It is the trauma of what is known among us as ‘medical gaslighting’. Some refer to it as medical ableism.
Our survey reveals the stigma of disbelief in healthcare contexts and the neglect and inequality that come with it, and our report calls for a rethink of the NHS approach to so-called “medically unexplained symptoms”.
Rethinking ‘Medically Unexplained Symptoms’
Our survey suggests that the construct of Medically Unexplained Symptoms (MUS) is frequently applied to disabled women with ELCI and chronic pain, especially with hard-to-diagnose or poorly understood diseases. Because MUS is conflated with somatisation disorder, their physical symptoms are effectively attributed to psychological distress or social factors without evidence of a mental health condition. The women we heard from reported overwhelmingly negative impacts on their health and wellbeing from MUS frameworks and treatment, including diagnostic delay and missed diagnoses, as well as the psychological trauma of ‘gaslighting’.
This prevents them from self-advocating effectively in their healthcare and is in striking opposition to principles of patient-centred care embraced by the NHS. It also breaches the fundamental principles of the Disabled People’s Movement: Nothing About Us Without Us. We, therefore, urge that the somatisation model of MUS be called into question.
Our Recommendations include:
-The voice and experiences of patients labelled with MUS must be heard. More research is urgently needed into service users’ experience of psychological therapies for MUS.
– Patients’ experiences of harm from psychological therapies for MUS must be believed. The Medicines and Healthcare products Regulatory Agency’s Yellow Card scheme for reporting harm must be extended to psychological and behavioural interventions.
– MUS services must be evaluated, not only for their stated aim of reducing healthcare use and costs, but for their impact on the health, wellbeing,and functional status of patients.
– We call for proper investment in biomedical research into hard-to-diagnose and poorly understood diseases that predominantly affect women to break this cycle of disbelief and neglect.
– In the meantime, a change in the attitude of Healthcare Professionals (HCPs) in the face of diagnostic uncertainty is needed. Disabled women with ELCI and chronic pain must be listened to, believed, and empowered to play an equal role in their healthcare decisions and symptom management. HCPs must be trained to be open and honest about the limits of medical scientific knowledge and approach uncertainty in a spirit of scientific inquiry.
– We call for better care coordination for disabled women with ELCI and chronic pain, especially in the context of multimorbidity. We also need better integration of healthcare with social care, welfare rights support, and mental health support.
– We demand domiciliary primary healthcare services for housebound disabled people as part of our fundamental human right to healthcare.
– We call for much more flexibility in service provision and accommodation to healthcare environments as a reasonable adjustment to fluctuating, energy limiting conditions, especially those with sensory sensitivity.
– HCPs have a duty to proactively support our claims for social security and social care support, regardless of whether the medical technology exists to measure our impairments.
To read or download a copy of our submission please click on the image below.
To read or download a copy of our Methodology Appendix please click here.