Maternity Services

Baroness Bull Excerpts

Thursday 25th January 2024 Lords Chamber

[Baroness Bull (CB)]

My Lords, like other noble Lords, I congratulate the noble Baroness, Lady Taylor of Bolton, on initiating this important debate and on her comprehensive introduction. It is a privilege—but, as has already been noted, somewhat daunting—to speak in this debate among so many acknowledged experts and long-standing contributors in this area.

The always excellent Lords Library briefing, already mentioned, highlights an issue raised by several noble Lords across the House: the experience of maternity services is not equal for everyone, and, once again, already marginalised communities and those in less privileged situations report a poorer experience of maternity services. I want to use this opportunity to highlight the experience of maternity services in England for another group who are not often included in these debates: women with learning disabilities.

The 2016 National Maternity Review set out NHS plans to improve maternity care and the care of people with learning disabilities. Despite this, the experience of maternity care for those women is still found to be consistently poorer than for the rest of the adult population.

A learning disability affects the ways in which people understand information, learn new skills and communicate. It may also mean a reduced ability to cope independently. Learning disabilities are often unique to the individual and can present in many forms, some obvious and some more covert in nature.

Of course, the general good principles of person-centred care apply to caring for people with a learning disability, but the challenges of pregnancy for women with learning disabilities, which include higher risks of perinatal complications and caesarean delivery, mean that midwives and other health professionals need particular skills and knowledge if they are to provide this person-centred care through pregnancy, childbirth and early parenthood. Without this specific skill set, the needs of these women cannot be met.

Significant emphasis needs to be placed on effective communication and the application of reasonable adjustments, to prepare parents and offer them practical and emotional support through their path to parenthood. People with a learning disability need to understand their midwife, and they need a midwife who understands their needs and knows how to provide the right support. That midwife may also need to educate and support other health and social care professionals they encounter on their journey to do the same.

The importance of continuity of care cannot be stressed highly enough when providing care to people with a learning disability. Equally important are the collaborative efforts of professionals to build a network of trust and care, which needs to be available through the parenthood journey, beyond birth, to best assist parents in bringing up their child and avoid those regrettable cases when children of parents with learning disabilities are removed from their parents’ care.

Public Health England’s 2016 recommendations and the Equality Act 2010 state clearly that people with learning disabilities should be provided with reasonable adjustments. If adjustments are not put in place to accommodate the complex and diverse needs of pregnant women with learning disabilities, they may be subject to a system that just does not work for them. One example is fast-paced appointments in which they are asked to absorb high levels of complex information and make informed choices at speed.

Writing in the British Journal of Midwifery in 2019, Samantha Vernon reported the findings of her research internship at the National Institute for Health Research into maternity services for people with learning disabilities. Her interest stemmed from her 19 years of clinical practice, in which she identified an increasing number of women with learning disabilities presenting for care in her trust but found no mention of learning disabilities in the 2019 NICE guidelines and no specific care pathway for women with learning disabilities.

Among her conclusions, she recommends the broader use of a “passport” for pregnant women with learning disabilities—a document prepared with the antenatal team that goes with these women through their maternity journey to help all the health professionals they encounter understand the ways in which that person’s learning disability affects their interactions with obstetrics and midwifery services. This would include critical information, including on reasonable adjustments, updated as appropriate, and would reduce the need for patients to be questioned over and over again, thereby reducing stress and saving NHS time. I know that hospital passports are now recognised for use by people with learning disabilities but it is not clear how actively they are promoted in maternity services. Perhaps the Minister could comment on that.

Samantha Vernon’s other key finding, perhaps unsurprisingly, is that formal training on learning disabilities needs to be increased so that health professionals can recognise and support women with learning disabilities through pregnancy, childbirth and early years care. This aligns with Mencap’s research, which uncovered a patchy picture in which the number of hours devoted to this content and the level to which this learning is assessed varies widely. Its 2017 Treat Me Well campaign showed that 69% of registered nurses wanted more training about learning disabilities. A qualitative study from Dr Emma Castell in 2016 found that midwifes often felt inadequately equipped with the necessary skills and training to care for women who have learning disabilities.

These studies are from some years back and there have clearly been some improvements in the intervening years. In January last year, working with NHS England and supported by the National Institute for Health and Care Research, the University of Surrey’s Together Project published a toolkit and guidelines to support the delivery of good practice in maternity services for parents with learning disabilities. This was based on existing research, best practice reviews and several interviews with health and social care professionals, parents with learning disabilities, and their supporters and carers. It is a clear and accessible guide, with practical and implementable evidence-based actions that can be taken. Can the Minister confirm whether this toolkit is widely available across all maternity services?

People with a learning disability—including those who are pregnant—are protected by a legal framework that entitles them to reasonable adjustments, so that they can access services; adjustments to communication; support with decision-making; the right to a family life; and dignity in care. Yet Mencap’s experience of providing training across several hospital trusts leads it to conclude that attitudes towards people with a learning disability can vary. It reports that, in some healthcare professions, including at senior levels, there are misunderstandings about what a learning disability is; lack of awareness about health inequalities; low awareness of the support required and the need to adapt communication; and a need for guidance on the implications of and responsibilities under relevant legislation, including deprivation of liberty safeguards. This last point is particularly important for midwives looking after women with learning disabilities, who need to be able to understand and apply the Mental Capacity Act, the Equality Act and the Human Rights Act to ensure that the needs of the women in their care are met and their rights upheld.

The 2022 Women’s Health Strategy sets out the Government’s ambition for England to be

“the best place in the world to give birth through personalised, individualised, and high-quality care”.

If this goal is to be achieved, training for midwives must equip them with the skills and competencies to support all women, including those with learning disabilities, through and beyond pregnancy and childbirth. In responding to this important debate, can the Minister assure the House that this training is taking place? Perhaps he could outline what steps the Government are taking to ensure that the rights of parents with learning disabilities to access maternity services free from discrimination, where their rights are respected and they receive high-quality, person-centred care, are being upheld.