6.2.3.1. National guideline documents
In addition to the disability legislation, standards of care established under the National Service Framework and the National Institute for Health and Clinical Excellence, formerly the National Institute of Clinical Excellence, and those
developed by professional bodies, all impact on the provision of services for women with disabilities. The National Institute for Health and Clinical Excellence is an
independent organisation responsible for the development and publication of national guidelines to promote good health. It has produced 3 documents that guide practice and care in the antenatal, intra-partum and postnatal period. At present, none of these documents mention or discuss care in the context of women with physical or sensory disabilities; however, a guideline currently being developed to provide advice on the care of pregnant women with complex needs, for completion by 2010, may possibly include information relating to women with disabilities.
A ‘good practice’ document entitled ‘Doubly Disabled: equality for disabled people in the new National Health Services (NHS): access to services’ was issued in 1999 (UK Department of Health, 1999), within the legislative framework of the Disability
Discrimination Act (UK Parliament, 1995; 2005a). The document provides guidance to senior managers of NHS services on what constitutes good practice and facilitates equality of access for people with disabilities. Although not specific to maternity services, some provisions of the document are relevant to women accessing the services during pregnancy, childbirth and early motherhood.
Within the guide the Liverpool Women’s Royal Hospital is presented as an example of good practice. The hospital has appointed a disability advisor who assumes a supportive and advisory role for both women attending the services and all staff working in the organisation. In addition to providing information, advice and disability awareness and training to staff, the disability officer also acts as an advocate for women attending the services. The disability officer is responsible for the promotion of equality of access, service and care and provides support, advice and information to women with a disability. The guideline also presents practical recommendations on how to communicate effectively and appropriately with people with disabilities. The application and use of auxiliary aids are promoted and practical guidance on how to assist a person with a sensory impairment is provided (UK Department of Health, 1999). Since the document was published, a Milton Keynes Hospital has also
appointed a disability advisor with similar roles and responsibilities as outlined above. These were the only 2 examples identified from the literature reviewed.
6.2.3.2. Guidelines and standards from professional bodies
Professional bodies such as the Royal College of Nursing and Royal College of Obstetricians and Gynaecologists have developed and published guidelines and clinical standards, which impact on the provision of care for women with disabilities. In particular, the Royal College of Obstetricians and Gynaecologists, in collaboration with the Royal College of Midwives, the Royal College of Anaesthetists and the Royal College of Paediatrics and Child Health, developed an agreed set of national
standards for maternity care, extending from the preconceptual to postnatal period (RCOG, 2008). Existing evidence-based standards were reviewed, and key
provisions were extracted and collated to produce this standard document, which contains 48 guidelines, only one of which refers to women with disabilities. It is, however, the first document that considers women with disabilities in the context of reproductive care.
Standard 3 addresses the issue of access to maternity care and indicates how local maternity services are responsible for ensuring inclusiveness of women with a learning and physical disability and that the services must address the individual communication, support and equipment needs of such women (Standard 3:3.9).
Standard 7 states that services must be innovative and flexible to address the individual needs of women with disabilities (Standard 7:7.4) and care should be delivered within a multi-agency team comprising of a specialist midwife and/or obstetrician (Standard 68:30.9). For women with a physical, cognitive or sensory impairment the method of communication employed and any information provided during pregnancy should be in an accessible and alternative format relevant to the individual’s need (Standard 22:22.7). When developing, planning and implementing local maternity services and strategies, Standard 26 determines that consideration and account be taken of the available technological equipment and networks, local transportation services and the physical accessibility of the building, all of these impact significantly on the accessibility of services for women with disabilities (Standard 26:26.6) (RCOG, 2008).
The standards document reflects the content of a position paper published by the Royal College of Midwives in 2000. The position paper reiterated the importance of consulting with women when designing, planning and implementing maternity services for women with disabilities (RCM, 2000). It states that women should have access to accurate, accessible and appropriate information, parent education classes should be accessible, flexible and innovative and midwives must be aware of local supports and contacts in order to refer the women appropriately. A philosophy of women-centred care should be adopted and, to alleviate the prejudicial attitudes that exist, disability awareness and training for all staff is advocated.
In 2007, the Royal College of Nursing also designed and published guidelines to assist midwives and nurses in addressing the needs of a woman with a disability during pregnancy, childbirth and motherhood (RCN, 2007). The guidelines identify the midwives’ responsibility under the various legislative instruments and promote the principles of equality, inclusiveness and non discrimination. They detail the correct and acceptable terminology that should be adopted and used during each interaction between the midwife and woman, and recommend effective and appropriate methods of communication. Knowledge and awareness of conditions and disability is
described as essential in the assessment and planning of care. Midwives are advised to be aware of the specific and appropriate questions to ask in order to conduct an
appropriate and relevant assessment and to provide adequate, accurate information. A knowledge of where, and from whom, women may source information is stated to be critical, and midwives are advised to collaborate with, and utilise, these resources to increase their own knowledge base (RCN, 2007). It is recommended that an assessment of women’s needs be conducted early in pregnancy so that referrals, if needed, may occur and suitable support structures can be established as early as possible. For example, antenatal care may be offered in the home or within the local community and any aids or equipment required for the birth can be organised well in advance. It is also stated that parent education classes should address the specific needs of this population and should provide referrals to appropriate parenting support groups and networks. The guidelines provide direction on how attitudes can be addressed through disability training and awareness, which may encourage midwives to embrace diversity and inclusiveness, encouraging women to remain independent and to become active participants in the planning and implementation of their care. The guidelines also provide practical guidance on how midwives can ensure that the physical environment is accessible and the communicational and information needs of women with disabilities are met in an effective, appropriate and accessible manner (RCN, 2007).
It was difficult to draw any conclusion of best practice due to a lack of research in this area, but the documents described above, produced by the 3 professional bodies (RCM, 2000; RCN, 2007; RCOG, 2008) are the best available. Information from these 3 documents has been compiled to provide a guideline exemplar, which is presented in Appendix 6.