Finding out on antenatal scans that your child has anomalies that will need surgery in the future is a daunting prospect for any family. At St Mary’s Hospital, Manchester, we manage and care for approximately 80 babies each year who are known to have surgical problems identified on antenatal scans. As a surgical tertiary centre of excellence, new advances in the provision of support for families of these babies have been made – starting before the baby is born.

Background

The Fetal, Antenatal, Neonatal and Surgical (FANS) clinic was set up in 2018 to coordinate a multidisciplinary approach to preparing families of babies with anticipated surgical conditions for management around birth and over the long term.

Families of babies with a wide range of anticipated conditions can be accommodated in this clinic (TABLE 1). An element of flexibility within the clinic allows each appointment to be tailored to the families’ needs. This approach has also been trialled with other surgical teams on a case-by-case basis where significant complications are anticipated.

TABLE 1 Conditions managed by the FANS clinic.

The FANS clinic

A family will meet a number of healthcare professionals during this clinic (TABLE 2). The baby’s expected needs at delivery, immediately after birth and in the longer term can be discussed as a team. The intended surgical procedures can be explained to the parents-to-be in a calm environment with little time pressure, giving parents the space and time to understand the procedure, what the implications of the surgery might be and to ask any questions that they might have. The needs of the baby and the wider family can be discussed and parents are encouraged to talk about ways that they will be able to engage in the care of their baby. Practical issues are covered, such as car parking and visiting arrangements.

TABLE 2 Some of the healthcare professionals involved with the FANS clinic.

The clinic includes time spent viewing the neonatal unit, allowing families to see the environment ahead of time and ask further questions.

The FANS clinic began as a joint quality improvement project between St Mary’s Hospital and Royal Manchester Children’s Hospital. Initially we held the clinic once a month but because of demand we now run it once a fortnight. It is intended to be a one-off appointment for families with all specialties and healthcare professionals available at the same time. The fetal medicine department coordinates the clinic as the appointments are scheduled with the women’s scans. In this way, an extra visit to the hospital is avoided and from a teaching and counselling perspective, we are better informed and come to the meeting with a team plan for the baby. This includes timing of delivery, where to deliver, mode of delivery and consideration of involvement from any other specialty, eg genetics.

A questionnaire

To gauge the impact of this clinic, questionnaires were given to the families after their consultation to assess levels of parental anxiety, their perceived knowledge and the extent to which their questions had been answered by attending the FANS clinic. The questions were divided into two sections.

Before attending the clinic:

• Did you have a good understanding of your baby’s condition?

• Did you have a good understanding of what to expect following your baby’s delivery?

• Did you feel anxious about the appointment?

After attending the clinic:

• Was the information explained in a way you could understand?

• Did you feel involved in decision making during the appointment?

• Were you able to ask questions during the appointment?

• Were staff sensitive to your concerns?

• Did you have a better understanding of your baby’s condition?

• Did you have a better understanding of what to expect for your baby, following delivery?

• Did you feel it was beneficial to attend the FANS clinic?

Questionnaire responses

The questionnaire was given to 24 parents over a six-month period; 19 responded and immediately returned their answers following their appointment at the FANS clinic. FIGURE 1 demonstrates that before attending the FANS clinic, most parents-to-be felt that they had some understanding of their baby’s condition, but a significant proportion were unsure what to expect after the delivery. The majority of parents felt anxious about the appointment.

FIGURE 1 Questionnaire responses before attending the clinic (n=19).

FIGURE 2 shows how families found this clinic extremely beneficial. All parents felt it was useful to attend the FANS clinic and having attended, all had a better under-standing of their baby’s condition and what to expect for their baby. They felt that they were in a supportive environment where they could ask questions and this helps to allay anxiety, empower the parents and engage them in the process of preparing for the future care of their child.

FIGURE 2 Questionnaire responses after attending the clinic (n=19).

Discussion

Given the complex nature of these babies’ conditions, a holistic approach is required to ensure all areas of health care are addressed. There is, therefore, a clear benefit of multidisciplinary team (MDT) working for families. The wide range of professionals present at the meetings gives parents-to-be the opportunity to explore issues and ask any questions they have about their future. Our parents found this experience highly valuable. These parents will need to work with medical, nursing and allied health professional teams on a long-term basis, potentially for several years. Setting up these professional–parent relationships in a positive, collaborative manner from the outset ensures the best possible way forward.

Moving forwards

The FANS clinic has scope for growth, both in terms of the teams that can be involved and in developing the services offered to these families. In future, it is hoped that the genetic and neurosurgical teams will get involved to offer this highly beneficial service to a wider range of families.

Neonatal trainees and the FANS clinic

When these babies are born they will be cared for on the neonatal unit where they will be looked after by a MDT, which includes paediatric and neonatal trainees. There is an unmet need among neonatal trainees who feel that they lack exposure to fetal medicine training, lack the necessary experience and opportunities to learn about this area, and worry what this might mean for their long-term practice as a future consultant.¹ McGrath and Dyet argue that more needs to be done to ensure trainees have adequate experience;¹ we suggest that trainees have a lot to offer a clinic of this nature. The FANS clinic is a great learning opportunity for neonatal trainees seeking greater experience in clinics and MDT working. This also benefits the clinic as trainees have up-to-date knowledge of the routine and working practices of the neonatal unit and are ideally placed to explain the daily medical routine to parents, such as ward rounds, investigations and parental updates. As well as providing excellent learning and experience, integrating neonatal trainees into these clinics gives parents-to-be practical information and a greater under-standing of the role of a trainee doctor.

Conclusion

The family-orientated, collaborative approach provided by the FANS clinic shows enormous benefits for parents-to-be and their unborn baby. Looking to the future, this approach is set to expand to include more specialties providing the same excellent care to more families. Trainees, as future consultants, should stand to benefit from this example of excellent practice in family-orientated care.

Acknowledgement

The authors would like to thank the spec-ialist midwives, neonatal nurses and parents involved in the running of this clinic.