The figures are brutally stark. Being an autistic or learning disabled woman wipes almost two decades off your life — NHS digital figures show they die 18 years before those without developmental differences. And on the face of it, there are few better illustrations of the gulf in standards of healthcare for women with learning disabilities than cervical cancer screening rates.
“It’s about training medical professionals, including nurses and surgeries — everyone who will be treating people every day — to actually have the right understanding of what learning disabilities and autism is so that they can provide that right care and have a better understanding of what to do.”
According to research by care firm Dimensions, just 19% of women with learning disabilities have had a recent cervical cancer screening test, compared to 73% in the general population.
My GP and Me campaign
Gemma Jones, who has a mild learning disability, is involved in the My GP and Me campaign run by Dimensions to improve healthcare for people with learning disabilities and autism. Dimensions’ found almost a third of people with learning disabilities or autism feel less likely to be treated with care and concern at the doctors, and two thirds said their GP did not make reasonable adjustments for them. Almost all GPs surveyed said they would like extra training in these areas.
Through the campaign, Jones has been involved in training staff at GPs surgeries to ensure people with learning disabilities get the routine healthcare they need. Jones, a Quality Consultant for Dimensions, said the training sessions are designed to help surgeries make the improvements needed to boost cervical screening rates. These include getting to know the person and ensuring they are clear on what the test involves.
For those who are non-verbal, Jones says it’s important to have family or support staff there to advocate for them and assist them in different methods of communication. Jones, 28, from Dorset, said: “It’s about training medical professionals, including nurses and surgeries — everyone who will be treating people every day — to actually have the right understanding of what learning disabilities and autism is so that they can provide that right care and have a better understanding of what to do.”
The government has completed a consultation exercise on plans to roll out mandatory autism and learning disability training across the NHS following a campaign led by bereaved mum Paula McGowan. Campaigner McGowan began her efforts when her 18-year-old son Oliver, who had epilepsy, a mild learning disability, and was autistic died after suffering an allergic reaction to antipsychotic medication.
All people with a cervix between the ages of 25 and 64 are invited for smear tests. The test looks for abnormal cell changes in the cervix that left untreated can turn into cancer. The cells develop from the human papillomavirus (HPV), which is passed on through vaginal, anal, or oral sex. It can also be passed on through other forms of sexual touching.
An inequality founded upon misconception?
Though Jones was referred for the test as a matter of routine because of her age, medics decided she did not have to attend because she is not sexually active. But she insists it’s a misconception that autistic and learning disabled people do not have a sex life, and this underpins the differences in screening rates.
During the test, which is usually carried out by a female nurse or doctor, medics put a small tube-shaped tool into the vagina before using a soft brush to take a sample of cells. Jones says though she has never had a smear test she has experienced other invasive procedures though the NHS. Her experiences have been mixed. On one occasion, she was left “traumatised” by a test involving a gynecologist, but at other times medics have shown more understanding.
Julie Tucker, who manages the North East and Cumbria Learning Disability Network cancer project, said understanding information and fear of the test itself have emerged as common reasons why people with a cervix avoid being screened. Parents and carers can also act as “gatekeepers”, making the decision for them rather than enabling them to make it for themselves, says Tucker.
She said: “As a parent you may perceive, ‘Okay, my daughter isn’t having sexual intercourse and it’s my belief that that is not happening.’ But there potentially could be other sexual touching, for example, that has happened and that is also a potential risk for transferring HPV.” Tucker says information held by GPs surgeries on the number of patients with learning disabilities is incomplete, so reasonable adjustments won’t always be made when people are invited for appointments. Reasonable adjustments are required by the Equality Act 2010 to give people with learning disabilities equal access to health services. They can include getting longer slots for appointments, or work to better prepare someone with a learning disability, such as reading social stories about hospital or surgery visits.
Tucker, who works in the NHS in a post funded by cancer charity Macmillan, says while around 2% of the population have a learning disability, only around .6% of people registered with surgeries are flagged as learning disabled. Those missed could include people who are mildly affected and managing without their problems being identified, while others living in the community or institutions may not be registered with a GP. But the much smaller proportion of learning disabled women going for smear tests may be more complex than simple neglect or institutionalised discrimination.
Though it’s possible to develop cervical cancer without being sexually active, NHS guidance says the chances are “very low” for those who have never had sex. Research by Mencap in 2005 suggested only around 3% of people with learning disabilities lived as part of a couple, compared to 70% of the general population. GPs have a responsibility to weigh up the potential benefits of any test against the distress caused.
In this context, the low numbers having smear tests may simply result from GPs feeling it’s not worth distressing potentially vulnerable women for the sake of a tick-box exercise in inclusion. Where a woman with a learning disability lacks capacity to decide for herself whether to attend a smear test, professionals will make a best interests decision.
Caption: Gemma Jones, who believes more work must be done to encourage women with learning disabilities to have smear tests.
