The Get Lippy campaign is for everyone. There are so many different reasons to get lippy about women’s health – from a lack of knowledge, the taboos surrounding gynae conditions, embarrassment and shame about having symptoms that might indicate something’s wrong ‘down below’, through to a distinct lack of funding in research for these cancers and the problems with access to services.
Disability should not be a barrier to good gynae care. One of our campaign ambassadors, Athena Stevens has cerebral palsy. She uses a wheelchair and she shakes a fair bit. Not easy to negotiate putting a tampon in, let alone attending her cervical screening appointment.
There’s very little information available to help people know what to ask for, or what to expect. Jo’s Trust is the leading cervical cancer charity and they produce a range of helpful information about what to expect when you go for a screening appointment. They also have an excellent video for people with learning disabilities. However, more needs to be done to ensure that having a disability doesn’t prevent someone from accessing good health care. And unquestionably, for all things gynae, it does.
We asked The Eve Appeal’s clinical team of GP’s and gynaecologists what their advice and tips were for women affected by disability and getting the care they deserve.
The over-riding message was the usual Eve mantra: every woman needs to know their body, know what is ‘normal’ for them and every person who has a cervix needs to attend their screening appointment when called. Men need to be included in this conversation too; every man who has an important woman in his life should be aware of her health care needs.
Central to good health management are two factors: owning your own health and building a strong relationship with your GP surgery and clinicians. This applies to everyone, but the key for women with disabilities is also good planning and communication with their GP (and the staff who are booking appointments, doing the screening etc.) so that every visit and procedure is arranged well in advance, the correct number of staff are available (often two members of staff will make things much easier), the right equipment has been organised and everything is in place to ensure the patient feels comfortable and in control of the situation.
It’s vital to discuss the surgery’s limitations with the patient in advance. Two of our GP advisers pointed out that they would struggle with patients who have severe mobility problems as neither have hoists in their surgeries. This isn’t a problem though, it just means that some patients will need a referral to a local hospital’s gynaecology department, where the right equipment is at hand. For example, GP’s can always refer patients with mobility issues to the colposcopy team for smears, if it’s too hard to carry out the test in a primary care setting.
It’s very difficult to do a gynae exam at home, which is problematic for patients who are housebound. But the advice is clear: talk to your clinical team and request that a screening appointment is booked to coincide with another hospital visit.
More needs to be done to encourage the parents and carers of those affected by disability to understand that the same rules to good women’s health apply – sexual health education, knowing your body, knowing the signs and symptoms and attending screening – regardless of ability.
Open communication is at the heart of these issues – back to why we need to Get Lippy again! Our doctors want to stress that if a person has specific mobility requirements, needs extra time or assistance, please ask. A well organised appointment means that neither the patient nor staff feel rushed and the whole experience will be more positive.
The final, and most important note from our medical team is loud and clear: don’t be dissuaded from having regular smears and always raise any concerns about potential signs and symptoms.
Through Get Lippy, we hope that we can reach out to many people with disabilities who are concerned about their gynae health and encourage them to seek help and advice.
If you have any questions, please contact our expert nurse-led Information Service, Ask Eve. It’s a free, confidential and no-embarrassment zone. Email nurse@eveappeal.org.uk