Women with cerebral palsy are still being excluded from essential healthcare

Richard_Scope

New research from the United States has added powerful evidence to something women with cerebral palsy in the UK have been saying for years: access to routine women’s healthcare is not equal.

A large U.S. study published in 2026 looked at healthcare records for more than 138,000 women with cerebral palsy, compared with over 550,000 women without cerebral palsy.

The differences were striking:

• 31.8% of women with cerebral palsy had a routine gynaecological examination within a five-year period, compared with 79.8% of women without cerebral palsy.

• 23.4% had cervical screening, compared with 54.1% of women without cerebral palsy.

• Among women aged 40 and over, 44.9% had a mammogram, compared with 72.3% of women without cerebral palsy.

But numbers only tell us part of the story.

Several years earlier, the UK ETERNAL study explored the experiences of women and girls with cerebral palsy across the life course.

The research was led by Dr Sonali Shah, then at the University of Birmingham’s School of Nursing, supported by the Burdett Trust for Nursing, with Scope involved in the research.

Women described barriers including:

• inaccessible healthcare environments and equipment
• difficulty positioning their bodies for cervical screening or mammography
• fear of pain, discomfort or being unable to complete an examination
• healthcare professionals having limited knowledge of cerebral palsy
• attitudes and assumptions about disabled women and their sexual and reproductive health
• services not adapting appointments or procedures around the individual woman.

Some women avoided screening because previous experiences, or the way services were organised, made them feel that the procedure would be too difficult or uncomfortable.

Put these two studies together and an important picture emerges.

The U.S. research shows the scale of the inequality.

ETERNAL helps us understand why that inequality can happen.

This is not simply about encouraging women with cerebral palsy to attend screening. Healthcare services also have a responsibility to make screening accessible, flexible and safe.

That means listening to women, understanding how cerebral palsy can affect positioning, movement and pain, providing accessible equipment, allowing enough time and making reasonable adjustments.

It is also important to recognise the sustained work of Dr Sonali Shah, who has spent years bringing the experiences and health inequalities of adults with cerebral palsy into research.

Dr Shah is now Associate Professor in Disability and Life Course Research at the University of Nottingham, where her research continues to focus on health inequalities experienced by adults with cerebral palsy. Her work includes further research aimed specifically at improving access to cervical screening for women with cerebral palsy.

The evidence is becoming harder to ignore.

Women with cerebral palsy have the same right to preventative, sexual and reproductive healthcare as everybody else. The healthcare system must be designed so they can actually use it.

🔗 ETERNAL research – barriers and enablers to screening for women with cerebral palsy:
Read the ETERNAL research

🔗 2026 U.S. study – women with cerebral palsy receive substantially less gynaecological preventative care:
Read the U.S. study

SaraC_Scope

I made reference to this in a video on Friday. There should be better awareness in the treatment of women with cerebral palsy from gynaecological services.

Too many women are unable to attend appointments and procedures because of accessibility issues or a lack of of understanding in how to support them. They should receive the same care and compassion as any other women and be seen as a person rather than a statistic.

Mary_Scope

Very shocking statistics