Setting standards and precedents

Isabella Devani, from Canterbury in Kent, UK, describes precedents and standards that are now being set for the care of physically disabled women following her experience of using maternity services in the region.

I began my pregnancy with waves of apprehension in the belief that my good news would be met with a spectrum of negativity arising from the health professionals involved in my care. I had assumed that because I was a wheelchair user with multiple sclerosis (MS), expecting a baby would produce reactions ranging from mild concern to utter panic and that I would face a regimented package of care to ‘deal’ with me if I couldn’t be persuaded to terminate.

Practical and ethical issues

Most of my fears were unfounded and the maternity service provided in my local area worked with me on the situation brought about by my physical disability, which had no protocol or precedent, in establishing a tailor-made service for each stage of my pregnancy.

The first challenge I faced was not being able to use the facilities at the local health centre where women receive their routine antenatal care. After the initial booking-in session it was decided that I would receive my care at home to save the difficulties of travel to the health centre as well as already having a bed there onto which I could transfer with ease in order to be examined.

I also experienced some resistance to my decision to refuse antenatal testing for chromosomal abnormalities by scan or blood test. This was an ethical decision which was related to my personal commitment to valuing life regardless of disability as well as the added fear that I might receive particular pressure to terminate because of the perceived limitations of my own (dis)ability if I were found to be expecting a child with special needs. After a change of midwife and a letter added to my notes this was thankfully no longer an issue.

Mixed attitudes

Mid-pregnancy continued with ease; even the fight I thought I would need to put up to receive a vaginal

delivery instead of automatically being booked for an elective caesarean did not transpire. The consultant obstetrician whom I saw readily agreed that a natural birth would be the most beneficial outcome for my MS and perfectly possible despite my physical disability. In fact her faith in me throughout the pregnancy was a wonderful source of support.

Unfortunately, this attitude was not reflected by one midwife I came into contact with who insisted on my referral to the Children and Families Team from social services. This led to an extremely worrying time for me while waiting for a pre-birth assessment to be carried out. The social workers from the Children and Families Team that were allocated to me had no issue with me parenting with a disability and expressed some frustration at being called in when there was clearly no concern from any of the health professionals involved in my care. The situation resolved itself.

Non-existent facilities

Arrangements for the birth and the postnatal period were a different matter though, raising many unforeseen difficulties for which no provision had been made. I had completed a moving and handling form early on in pregnancy but it was not reviewed and what with the increased pressure of late pregnancy I did not discuss putting arrangements in place for my personal care while in hospital having the baby. Unfortunately, this meant that I had to wash and dress myself in the first few days after the birth as well as recovering from the labour and looking after a newborn baby.

The facilities for wheelchair users at both units I stayed on after the birth were non-existent. There wasn’t even a toilet I could access on my own and on several occasions I had to be accompanied by a member of staff to the disabled facilities in the main lobby of the hospital.

I was also advised against delivering in the unit of my choice because of its lack of medical back-up which meant, potentially, travelling 20 miles by taxi, while in labour, so that I could attend a major maternity unit. Luckily, when it came to it, I was transferred by ambulance anyway, but a good decision was made subsequently to transfer me back to the midwife-led unit after the birth for some step-down care.

I had not thought through with the midwife some other practicalities too, for example being able to pick the baby up from out of the high maternity cribs. This meant being reliant on a member of staff to give my baby to me and having to hear my baby crying until they were free to assist.

Improving policy and practice

The consultant midwife who had taken over my care has decided to use just such situations as this to become practical examples to inform future policy and good practice for all midwifery services in East Kent. Cots which clip onto the side of a hospital bed are soon to be provided for each unit in the area and while there is still no opportunity for introducing specific training for staff there are plans in place to provide packs for both staff and patients with information about all forms of disability. In addition, the contact that staff have had with me has created, I understand, a training opportunity in itself from which many lessons can be learned.

Another measure due to be put in place is an increased awareness of disabled parenting, including the subsidiary issues of housing and domiciliary care.

Overall, my pregnancy experience was positive and I am extremely pleased by the response that the maternity service had to my disability and their willingness to learn from my experience, bearing in mind that we were all in uncharted waters. I too will personally be involved in that process, helping to compile materials to inform disabled parents-to-be in the East Kent area, and am glad to have set precedents myself for the care of physically disabled women using maternity services in this region.

Next: Good practice... Value of service user involvement