Issue 59 / Spring 2023

Gail Busby and Mars Skae tell us about their experience, establishing a very successful paediatric and adolescent gynaecology service in Manchester, UK.

Please tell us about yourselves

Gail: I am a consultant gynaecologist with a special interest in paediatric and adolescent gynaecology. This makes me well placed to run this service, as I can follow patients from childhood, through puberty and into adulthood, if necessary. This allows me to forge long-term clinical relationships with patients. I set up the tertiary referral service for paediatric and adolescent gynaecology in 2009, when I was appointed as a consultant in Manchester.

Mars: My role in the complex gynaecology and differences of sexual differentiation (DSD) transition clinic is as a transition endocrinologist. Having known most of the patients during their paediatric years provides continuity of care. I also advise on aspects of hormonal replacement, particularly in cases such as those with congenital adrenal hypoplasia, and engage with complex discussions around new diagnoses of DSD.

What shaped the service?

G: I originally ran the service single-handedly, but soon recognised the need for multidisciplinary support for complex cases. I then assembled the multidisciplinary team, including paediatric endocrinology, reproductive medicine, psychology, dilation therapy and paediatric urology. The colocation of Royal Manchester Children’s Hospital with Saint Mary’s Hospital was an ideal situation in which to set up such a service, as joint working was logistically not too much of an issue. I was extremely lucky to have such motivated and skilled colleagues who were happy to become part of the service.

M: Gail and I recognised a need among adolescents and young women who were moving on from paediatric services. Management of their hormonal replacement and provision of a complete holistic package for these individuals (with Turner syndrome, congenital adrenal hyperplasia, DSD, some Mayer–Rokitansky–Küster– Hauser syndrome and cloacal anomalies) necessitated the development of a service. It aims to provide lifelong support for those who may have issues at different times in their lives, and patients can always be referred back into the service if necessary, after they are discharged to the care of their primary/local provider.

How did you create a joint service?

G: I contacted the various members of the current team, who were all willing to be involved. From that point, there were negotiations to include clinics in various job plans and discussions around funding. The need for the clinic was obvious and, as a Trust, we always aspire to deliver goldstandard care for our patients, so the management were also supportive. Clinic space and time were then explored and allocated. Finally, I contacted primary and secondary care providers in Greater Manchester to raise awareness of the service. It took a significant amount of time and effort (as does every worthwhile undertaking), but it has been worth every minute, in order to be able to deliver the service we have today.

How does the service operate?

M: We have a joint, monthly, multidisciplinary clinic, with input from the perspectives of gynaecology, endocrinology, psychology and fertility medicine, including a specialist nurse who can address concerns around sexual intimacy and intercourse. The service runs at a local communitybased health centre, which ensures a non-threatening environment that is not highly medicalised.

G: Clinics are arranged into ‘themes’ for different conditions, in order to improve efficiency and to better cater for the needs of particular groups of patients. Further input (e.g. paediatric urology, genetics) is arranged on an ad hoc basis.

How have patients responded?

M: Having the joint service ensures better patient care and patients feel that they can address several concerns in one setting in a more holistic fashion. Some patients, who are extremely distressed about their condition, can also resolve long term concerns and issues in a joint setting, where there is multidisciplinary provision. Access to paediatric records means we can fill gaps in patients’ knowledge, if required.

G: I didn’t foresee how much patients would value the service and that, when they are due to be discharged to primary care, it would often be a difficult decision; they feel so well supported that they wish to remain with us. It is also a wrench for us to discharge them after building a supportive relationship, often over several years, through the teenaged years into adulthood.

What are your plans for the future?

G: We have recently expanded, but still have a long waiting list. Further expansion seems inevitable.

M: The numbers in the service have gradually grown over the years. We had to recruit a second gynaecologist and a clinical fellow, as we try to get through the waiting list. It is important to have clear frameworks around the discharge of patients who have been seen and have a full care package that doesn’t require further intervention.

What advice would you offer others about setting up a similar service?

G: Do it! Network with colleagues and meet with managers. Visit services in other hospitals to get ideas. Be open-minded and start small. It will grow over time, and faster than you imagined.

M: This is definitely a worthwhile endeavour, because it benefits patients significantly. We would encourage centres with adequate expertise to try to do so.

Is there anything else you would like to add?

G: I thank all my colleagues who have come on this journey with me and had the faith to become involved in the service. I also thank the patients who have been so accepting, supportive and encouraging. It is their feedback and honest communication which guided the various improvements over the years. We still strive for further improvement.