good practice
Influencing maternity services
Isabella with her son and daughter.
Isabella Devani, a disabled mother from east Kent, UK, describes the ways in which disabled parents in east Kent are changing NHS maternity services.
Disabled parents, from their own experience, have much to offer the National Health Service (NHS) in the design of maternity services. Not only should there be services that support disabled families during pregnancy and birth but a surprising number of adaptations benefit all women expecting a baby.
In east Kent, as in every area, a Maternity Services Liaison Committee (MSLC) monitors, evaluates and helps to shape the local NHS maternity service. The East Kent MSLC is a multi-disciplinary committee, including midwives, obstetricians, commissioners, other supporters of the service such as breastfeeding counsellors and, most importantly, user representative members. These user reps are women who have had a baby in the last three years, or their partner.
User consultation
The MSLC is informed and consulted on all major issues facing east Kent's maternity services. These services are run by one of the largest hospitals trusts in the country and include antenatal and postnatal care provided by midwives in the community, scans and tests, home births, labour wards, obstetricians, birthing centres and all hospital maternity care.
I have found that by being a disabled representative on the MSLC, it is possible to inform the commissioners within the primary care trust (PCT) and hospitals trust management team of the possible barriers to disabled parents, as well as the benefits to all families and staff in making changes to the service.
User reps have recently carried out an audit of consultant-led labour wards across the region. This has been an important opportunity to observe barriers to disabled people first hand. The reports written following these visits have highlighted concerns, such as a lack of toilets and bathing facilities for disabled people; an absence of variable height cots; a lack of space on wards; and areas inaccessible to those with impaired mobility.
Implementing change
Management responded to the committee's concerns and within nine months a refit of bathrooms, including flush floor showers and other facilities, was implemented. More than that, the needs of disabled parents have been made part of the agenda in terms of both environment and service design.
It has been insightful to all concerned how many of the adaptations to the labour wards and antenatal/postnatal bays have benefited all women in the latter stages of pregnancy, not just disabled women.
For instance, the new wetrooms allow everyone a safer and more comfortable shower with space for assistance from staff as necessary. For this project, the East Kent MSLC has been awarded an NHS Best of Health Award for its achievements in improving people's experience.
The user reps have further plans to draw to the PCT's attention. Since water can be particularly useful for helping women cope with the pain of labour and can reduce spasticity, the MSLC would like to see the introduction of water birth facilities for disabled women and staff trained in their use. Designated training sessions for all maternity staff in issues affecting disabled parents with physical, sensory and learning disabilities is also a priority for the coming year.
Disability support scheme
During 2007/2008, I worked with one of two consultant midwives in east Kent to create a county-wide disability support scheme for expectant mothers and their partners. The scheme has an assessment form to be filled in with a community midwife detailing equipment, interpreters or adaptations that need to be in place for women's care, as well as providing for personal care needs and ensuring accessibility to appointments. The scheme is keen to detail plans for disabled fathers in addition to mothers-to-be.
The scheme has identified two midwives, now named as disability leads, who are available to meet with women and their community midwife to discuss any aspect of their care. One of these leads has a particular interest in learning disabilities and both are actively reviewing and building on their knowledge of disabled maternity care.
The third part of the scheme is a disability resource folder held centrally but available to any midwife or parent in order to read through its collection of articles, leaflets and journals related to disabled pregnancy, childbirth and parenting. The folder has an alphabetical index that is held on every hospital site for midwives to offer to women or draw on themselves.
To introduce the scheme to expectant women, a welcome leaflet has been included in every maternity pack handed out by general practitioner surgeries before the first midwife appointment. Guidelines have also been produced for midwives to use in conjunction with the scheme, describing how best to use the materials with their clients. The scheme is currently being trialled by two disabled women across the region with the hope of revising, finalising and implementing it across east Kent soon.
One concern with the scheme has been that not everyone who would benefit from its use would consider themselves disabled, or conversely families with little need may attempt to use the service to gain access to increased care or single rooms while in hospital. The length of the assessment form may also need to be reviewed as it could be unwieldy for staff to interpret in the event of admission to hospital in an emergency.
It was felt more important to detail as many possible adaptations or scenarios that may be needed by families rather than leave any out. One service user trialling the pack realised that the pieces of equipment she used on a daily basis were so routine that she forgot to include them on the form without prompting. For that reason those pieces of equipment initially left out were actually the most essential.
A culture of inclusion
There is still much to learn on how best to represent the needs of disabled parents in the design of maternity services and create a culture of inclusion by management and staff on the ground. However, a local Maternity Services Liaison Committee has been an ideal way for disabled parents in this area to describe their experience, voice their concerns and actively work with commissioners and providers to design a maternity service that meets many more families' needs.
East Kent MSLC hopes that the projects that it has initiated over the last year will start to bridge the gaps in provision for disabled parents and generate more interest from local service users to continue the work begun and become part of the future changes.