In August 2019, Jo's Cervical Cancer Trust reported that women living with physical disabilities are facing more difficulties when accessing their cervical smear tests, and some women reported having been denied them entirely.
Cervical cancer takes two lives every day and impacts nine women every day who receive a diagnosis. At a time when screening rates are at their lowest in 19 years in England, and at a 10-year low in Scotland and Wales, it is vital that women eligible for smear tests are provided with them when they receive their invitations (Jo's Cervical Cancer Trust, 2019a). However, for women with physical disabilities, Jo's Trust found that 63% of the 335 women in their research were unable to attend their screening as a result of their disability and their practice's inability to provide for their specific needs.
Under the Equality Act 2010, the NHS is obliged to deliver adjustments for patients with physical and learning disabilities, providing equal access to care. Alongside this, health professionals must continue to battle the associated stigmas regarding sex and disability in order to make patients feel as confident and comfortable as possible when accessing services. A lack of awareness around these issues is not only outdated, but it is putting patients at risk.
A report has found that women living with physical disabilities have more difficulty accessing cervical cancer screenings than non-disabled women
The report
In the UK, there are approximately 13.9 million people with disability and 56% are women with impaired mobility (Department of Work and Pensions and Office for Disability Issues, 2014; Scope, 2019). In the survey of 335 women with a physical disability, 88% said it was harder for them to access cervical smear tests, 63% said that they had been unable to attend their screening because of their disability, and 49% said that they had chosen not to attend their screening because of previous bad experiences related to their disability or worries about how people might react.
Several women contributed their personal experiences to the report. You can read them in full (Jo's Cervical Cancer, 2019b); however, the following are some selected excerpts that may be of particular note for practice nurses:
‘The nurse seemed to feel awkward and didn't really know what to do or suggest a solution. It seemed as though I was the first person with a physical disability she had ever had attend a smear test. Even if this was the case, there was a lack of warmth or reassurance as I was clearly nervous’
‘The last time I went for a cervical screening I was really nervous and clammed up so the nurse had problems doing the test on me… it was a really bad experience for me and I've never been back for a smear test since.’
‘Sometimes you have to beg for a medical professional to come out to your house.’
‘My disabilities are all invisible. My GP and the nurses are brilliant but as they can't see what's wrong with me, they struggle to understand how much pain I experience. I suffer from allodynia, so even a gentle touch can feel disproportionately painful.’
‘Sexual health care for disabled women, preventative and treatment, needs to be discussed openly without assumptions.’
‘In addition to my physical disability, I find the smear tests extremely painful and incredibly distressing… However, when I finally did make myself go the nurse was amazing.’
Sexual health
The report also discussed sexual health for women with physical disabilities. One in five women with a physical disability said they were assumed not be to sexually active. As HPV is passed through sexual contact, it is hugely important not to make any assumptions about any patient's sexual activity – whether they are disabled or not.
Some women reported that, as they are often presumed not to be sexually active, they were even told that they were not at risk of cervical cancer and that screening would not be necessary for them. One respondent reported that her GP told her that it was ‘obvious’ that because of her condition she was not having sex. Another woman noted that because she is a wheelchair user that she could not attend her screening, and that as she was presumed to not be sexually active, so a smear test was ‘not something I should worry about.’
While these conversation around sexual health and sexual activity are sensitive, and perhaps some nurses feel embarrassed bringing them up, it is no excuse not to discuss it when patient's health is at risk. We all know the dangers of inaccurate health education, and if patients are fed the wrong information, or left to research it themselves from unreliable sources, it becomes a public health concern.
Diverse disability
Physical disability comes in many forms and it is important to remember that not all disabilities are visible. There can be a wide range of long-term health conditions that do not require a wheelchair or walking aids, such as myalgic encephalomyelitis or fibromyalgia. People living with these conditions may have their quality of life affected by their disability, although it is not obvious from the outside. They may need adjustments and additional support to access screening, and it is up to health professionals to consider these factors.
Making women feel comfortable and discussing their disability openly could affect their ability to access their screening – this is particularly important for women with complex, rare or multiple conditions.
Changes that you can make
There are several actions that your practice can take to provide equal access to potentially life-saving care:
- Use national support services to address inequity in access
- Review your practice's policies and ensure pathways or adjustments are in place to ensure every woman can access cervical screening
- Keep updated on Care Quality Commission and health inspectorates who regulate access in general practice
- Research the most effective way of offering cervical screening to women with a physical disability, including feasibility of HPV self-sampling
- Undertake sample taker training, and refresher training, to include potential needs and adjustments that should be considered for women with a physical disability (Jo's Cervical Cancer Trust, 2019b).
Conclusion
As practice nurses, you know the many factors that affect screening rates – and those that most affect women in your practice area. Access is often an issue, whether women are disabled or not, and childcare, work, travel and appointment availability can all impact uptake.
However, stark inequalities exist across healthcare. Although some practices are able to support patients living with disabilities, many are not, and perhaps not doing enough to create equal access to care and making women's experiences as easy and comfortable as possible. As we are all aware, access to health screenings should not rely on a postcode lottery.
Jo's Cervical Cancer Trust has kindly collaborated with Practice Nursing to offer our readers tailored advice (Box 1).
Box 1.Advice for general practice nurses
- Cervical screening can be a difficult test for a wide range of reasons, yet for women with a physical disability there can be additional barriers to overcome. This includes lack of wheelchair access to practices, unavailability of equipment such as a hoists or height-adjustable beds and gaps in provision of home visits for those unable to leave the house
- One in five of those Jo's Trust spoke to said it has been assumed by a health professional that they are not sexually active because of their disability. These sorts of misconceptions are not only hurtful but dangerous
- National support, notably funding, is certainly needed; however, nurses and GP surgeries can take action by reviewing existing policies and practices. This includes identifying if pathways for referrals to more equipped venues is needed
- Working with women who want to access the test is important to understand individual needs and requirements. This might include suggesting a double appointment. Assumptions should not be made about needs or the sexual activity of the patient
- Sample taker and refresher training should include all of the above to enable staff to champion this cause in their practice and educate others on it