Managing menstrual problems in adolescents with neurodisability

To adolescents with neurodisability and their caregivers, the onset of puberty and menstruation can pose a significant challenge. How do you manage the practicalities of managing periods? How do you learn to recognize problems related to hormonal cycles, such as increased seizure frequency?

Talking to paediatricians and charities such as Mencap, we identified a need for improved access to services to help with menstrual problems in these young people.

Many aspects of this topic are already recognized and reported: menstruation brings practical hygiene difficulties; heavy, irregular or painful periods are more common in adolescents with neurodisabilities than in the general population; and hormonal changes can provoke cyclical disturbances in behaviour and increase seizure frequency. Deciding whether menstrual suppression with contraception is indicated, and which form is most appropriate, is also more complex: interactions with other medications, increased risk of blood clots, and issues surrounding compliance all need to be taken into account.

Although there is a dedicated paediatric and adolescent gynaecology (PAG) clinic at Queen Charlotte’s & Chelsea Hospital, there was no clear referral pathway, and they were receiving few referrals of these complex patients.

Therefore we sought a way to connect up the already available resources. After meeting with the doctors and nurses at the PAG service, we together set up a weekly teleconference which allows neurodisability, adolescents and gynaecology consultants to talk through difficult cases, and suggest appropriate management plans. We are also setting up a biannual multidisciplinary clinic between these specialists, to help those more complex young people who may need reviewing by gynaecology in person.

We hope by publicising this new referral pathway, we will improve the experience of puberty for young people with neurodisability. We will also be presenting out findings at a European conference in Turin in May.

Through this work, I’ve learnt that simply by opening lines of communication between different teams, patient care can be improved, without requiring any new resources. I feel this is a lesson that can be applied to many different areas of child health.