New Information Guide for Midwives
A new booklet, Pregnancy and Disability, has been published by the Royal College of Nursing to improve the level of care available to disabled women who are pregnant.
Midwives and nurses have welcomed the 32-page publication which will help them to provide high quality, client-led care for disabled women during pregnancy, birth and beyond.
The author, Jackie Rotheram, herself a disabled mother, writes with the authority of long experience gained in pioneering and running the first specialist midwifery service for disabled women at a large women’s hospital.
With her collaborators she gives a thorough description of how others can deliver the kind of service that meets the needs of disabled women by seeing the woman first and her impairment second.
The complex issues of what it means to be disabled, with relevant statistics, are discussed in full.
The legal background to disability discrimination is well covered, highlighting the new Disability Equality Duty - all public sector pregnancy supplement organisations including the NHS are now positively required to promote equality for disabled people.
Case studies of the four broad categories of disability – physical, sensory, learning and long-term mental illness – illustrate vividly the issues for health care workers.
These will assist midwives and nurses to consider and plan in advance with disabled clients how their particular needs can be accommodated, working with other agencies and professionals where appropriate.
Rosaleen Mansfield, Chair of Trustees, Disability, Pregnancy and Parenthood International (DPPI) said: “I warmly commend this new guide. A large proportion of the enquiries DPPI receives come from disabled women considering parenthood, or who are already pregnant.
“They want to be as actively prepared as anyone else. They also need extra information, possibly to help them source support and equipment in good time. “This new guide on pregnancy and disability is an invaluable new resource.”
The Author
Jackie Rotheram is Disability Advisor and Specialist Midwife at the Liverpool Women’s Hospital NHS Foundation Trust Disability Service.
As a disabled mother and midwife, Jackie was given the opportunity to bridge the gap in service provision she had identified so that equality of access to services was assured for childbearing women with disabilities.
Jackie has a strategic role advising all trust directorates and working with trust and external activities, groups and networks.
She also works with human resources and occupational health on supporting disabled staff and is responsible for disability awareness training.
Jackie has spoken extensively in the UK and abroad and has received several prestigious awards, both individually and with her trust. She is currently engaged in research, teaching and further writing.
Case study - Pregnancy and Disability
The Pregnancy and Disability booklet features a case study of Mary, who has spina bifida and is a long term wheelchair user.
She contacted the maternity services through ASBAH and her local support group. Genetic counselling was included and urine testing arranged because of fears of infection related to catheterisation, which Mary performed for herself.
Other issues discussed included breathing as her uterus enlarged, her ability to care for herself, tissue viability, pregnancy changes, antenatal care provision, type of delivery, and pain relief, including epidural use.
Six months later and now pregnant, Mary visited the antenatal clinic where
a needs assessment was performed alongside the booking history.
Antenatal screening tests were all accepted. Referrals were made at Mary’s request to professionals including a dietician, physiotherapist, health visitor and urodynamics specialist, because of repeated infections.
Mary expected no difficulty regarding her wheelchair when her girth and weight increased, as it was of a good size.
Early pregnancy proceeded normally but Mary experienced some difficulties later on when bending forward became difficult.
In addition, her increased weight and reduced mobility increased pressure on her lower back, so Mary was admitted at 28 weeks gestation for rest and help with tissue viability.
She had no pressure sores but her buttocks were becoming increasingly red and tender. The tissue viability nurse visited and a special mattress was provided.
Physiotherapists provided advice on exercises and taking regular periods of lying flat, out of the wheelchair.
In preparation for the birth, appointments were made with the obstetrician to discuss the mode of delivery and a tour of the delivery suite and postnatal ward was arranged.
At 34 weeks gestation Mary’s large uterus was compromising her breathing so it was decided to perform a caesarean section.
Mary remained awake for the delivery and her partner stayed with her throughout the procedure and afterwards.
Mary was seen by the physiotherapist and a manual handling assessment was performed, identifying no risk issues. Her partner took responsibility for bathing the baby as bending was difficult for Mary.
She concentrated her efforts on breastfeeding and a five-day hospital stay helped her to establish this and gain more confidence.
The occupational therapist performed a home assessment and found that Mary and her partner had planned well.
The community midwife visited daily at first, gradually decreasing her visits until transfer on day 21 to the health visitor who Mary already knew.