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A day in the life of...A midwife and disability advisor

Jackie Rotherham
Jackie is pursuing an MPhil at Liverpool University, exploring the needs of disabled women during pregnancy, childbirth and early parenting. She would welcome contact from anyone involved in the same area -
T:0151 702 4012
F:0151 702 4255
E:jackie.rotheram@lwh-tr.nwest.nhs.uk

My role is so varied that no two days are the same. I represent the community I serve and therefore am ideally placed to bridge the gap in service provision, offering support, advice and relevant information tailored specifically to individual needs.

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9.30am. My day usually starts in the office, but today I have an appointment to see Mary at home. Mary has suffered with multiple sclerosis for six years. Now pregnant with her second child, she wants to discuss pain relief. Because of her many limitations, a home visit is preferred. A hospital environment can be disempowering for many women, not least this minority group. Research confirms that a woman's own home is usually the best environment in which to meet.(1) Mary's home is equipped to meet her specific needs, and as a result she is more relaxed and in control. 
A service that meets the needs of disabled women should be flexible and creative in its delivery, empowering women to be full participants in their own care. As carers we must be prepared to listen and learn. During the visit we explored Mary's specific needs from her own perspective of her impairment, at her own pace. She requested information on alternative methods of pain relief, and I informed her of the choices available. She requested an appointment with the aromatherapy midwife and the anaesthetist. 
Disability needs are personal and individual-empathy and not sympathy is the key to success. It is important to recognise a person's strengths before their limitations. We need to provide information that is accessible, appropriate and relevant, seeing patients as equal partners in care.

10.30am. I return to the hospital and proceed to open my mail and listen to my voicemail messages. I receive numerous requests from professionals from different disciplines to visit and observe my role in action.
 
11.00am. A student occupational therapist, with prior arrangement and consent, accompanies me on a home visit to see Anne. Anne has a hemiparesis (weakness) of her left side following a road traffic accident (RTA). Her first child was born 10 days ago, but her impairment is such that the weakness in her hand and fine movements of her fingers are causing difficulty and frustration in her attempts to care for her child. A self-referral was made for advice and support. 
Because of my own experience of disability (following a severe head injury from an RTA I have a left hemiparesis, with no use in my arm and hand and limitations on all activities), I give experiential advice. I can show Anne how to dress and change a nappy with one hand, how to perform a baby bath independently, how to lift and carry her baby, and how to breastfeed successfully. She lives with her family who are very supportive. I also give details of manufacturers who supply equipment and outlets where clothing with velcro fastenings can be bought. 
Sadly, there are many myths associated with disabled pregnancy and parenting. Assumptions are made that women with physical impairments do not want or are unable to pursue the role of parenting. Similarly, it is often thought that disabled women cannot adequately care for and meet the needs of their child. From my own experience there is not enough relevant and specific information available; nor are there enough manufacturers prepared to be innovative in the equipment they provide.(2) Professional carers are generally supportive but do not always have the knowledge on how disability affects pregnancy, and vice versa, and where to access the specific support that is required. These women want to be treated like everyone else, but not at the cost of their disability being ignored.
After spending lunch looking at policy guidelines, I write a plan of care for Jane who has spina bifida and is a wheelchair user. This is her first pregnancy, and she is eager that her carers are fully informed of her needs. The plan of care gives detailed information about her impairment, her limitations, her specific needs and suggestions on how to meet these needs, such as having her own room, using a pressure-relieving mattress on a height-adjustable bed, using a drive-in shower and so on. Women with a hearing impairment would need to use a baby alarm mattress and perhaps a minicom or loop system. Jane's individual needs are communicated to all involved in her care.

2.00pm. Ten staff members attend disability awareness training. As a disability advisor I am responsible for all training and education of staff. Issues around disability are often complex. A wide variety of impairments cause disability, which vary in complexity and severity. The Disability Discrimination Act (DDA) 1995 sets out a statutory obligation to provide equality regardless of ability. 
Too often access for disabled people is thought of as just ramps and lifts, but the DDA indicates that the most significant barrier cited by disabled people is inappropriate staff attitudes and behaviours. Staff attitudes are perceived as more important than medical aspects of care.(3) 
This issue is just as important for nurses who are disabled. While their experience can give them a unique understanding into the needs of their patients, their particular circumstances can also mean that at times they feel isolated. One way of overcoming this, and of helping to raise the profile of disabled nurses, is by coming into contact with other nurses, both face to face and via the growing "online community" of nurses: www.justfornurses.co.uk is one such community where experiences.
 
4.00pm. My last appointment is to see Sera at home. Sera has a learning disability and was referred to me for one-to-one support at her request. Because of her disability Sera is unable to read or write, so the first contact was made by telephone. She has many needs relating to her disability, and she is extremely anxious. Her partner is very supportive and recognised the fact that they would need additional support in their parenting role. 
At this first visit a detailed needs assessment is performed to include all dimensions - health, physical, emotional, environmental, educational, financial and spiritual. To enable Sera to make an informed choice about her care, one-to-one instruction and teaching is given and will be reinforced throughout her pregnancy. The assessment indicates that specific support is required, and with her consent referrals are made to the learning disability team, social worker and health visitor. She also requests assistance to write a letter to the benefits agency. Statistics show that 30% of people with learning disabilities have a second disability; Sera is also blind in one eye, and care is required for this.

It is important that services reflect the needs of disabled women and that choice, control and continuity are recognised as key concepts in the provision of care.(4) Services should be woman-centred and accessible to all, in particular to those least inclined to use them. A nursing or midwifery service that meets the needs of disabled women effectively is likely to be a service that meets the needs of ALL women.

References

  1. McKay S. Midwifery care for women with disabilities. Midwives 1997;110:239-40.
  2. Rotheram J. Caring for the minority within the minority. Br J Midwifery 1998;6(9):596.
  3. Hepburn M, Elliot L. A community obstetric service for women with special needs. Br J Midwifery 1997;5(8).
  4. DoH. Changing childbirth. London: HMSO; 1993.

Further reading
Brown B. Br J Midwifery 2001;9(6).