Supported by NHS England, CHANGE and Patient Experience Network (PEN) worked together in 2015 to provide a feedback platform for parents with learning disabilities, with the aim of improving maternity care and experiences for this group of seldom-heard service users. Working together to effectively capture and understand the maternity experiences of these parents, before offering recommendations for service improvements that could support care to be more person and family centred. The aim being that sharing observations would drive conversation and inspire people to try ideas and find care solutions themselves.
What they did
- Over a six week period they invited both healthcare professionals and parents with learning difficulties to take part in an online survey (the parent tool was designed to have easy read and accessible format).
- In this survey participants were asked a series of questions to help the team understand both the maternity experience in general and specifically that of people with learning difficulties
- The team also held a series of focus groups across the country, where parents were asked to share their experiences and care aspirations.
- The focus groups not only reinforced the findings from the online survey, but also provided parents with a much wanted and appreciated opportunity to come together and bond over shared experiences.
- In each focus group, using a ladder of power analogy, discussions were held about a range of people involved in the maternity experience.
- The groups were asked to discuss each type of person involved in their experience of parenthood – including themselves as parents, and how much power they felt they had over them and their experience, and the impact their role had on the maternity care provided in general.
- Each person was added to the ladder depending on how much power the parents felt they had – the most sitting at the top of the ladder, and the bottom the least.
- Insights were condensed and compiled into a typical ladder of power with comments from parents. As you can see from the image below, the majority of participating, parents with learning difficulties saw themselves as having the least power in their experience, and sitting at the bottom of the ladder.
Overall the parents felt the areas of their experience that worked well were:
- access to the community midwife
- where buddy schemes existed these were well received
- the advocacy provided
- support groups e.g. Georgie Mums, Camden People First
The areas parents felt did not work well, and had a negative impact on their maternity experience were:
- Being judged all the time
- Attitude of staff
- Conflicting information (people telling you different things)
- Not supported to breast feed
- If in pain not supported by the midwife
- Most Dads did not feel welcomed during birth
- No support when babies taken away
- Encouraged to have an abortion without being told why
- Ability to get appointments at the GP
Parents were also asked to consider what they would change about the maternity experience. Though views differed from individual to individual, there were some core themes and areas put forward:
- Provide training – of how to work with parents with a learning disability (both midwives and social workers)
- Attitude and behaviour – particularly people on the wards and in the GP practice
- Communication – many parents struggle with literacy or have a short attention span so provide resources that will help e.g. easy read/ DVDs/pictures and be happy to repeat important messages
- Cleanliness – ensure wards are hygienic
- Temperature – make sure wards are not too cold
- Uniforms – colour of the uniforms can be very confusing
“I am a mother myself with learning disabilities, who has lost her children to social services, so I was delighted to receive this project, and to hear what other mums and dads thought of the maternity services and how to improve them.
“We met parents in all different areas of England from starting off in Leeds, to finishing off in London and each area was different. In Newcastle I felt that though the mums there were supporting each other, through peer support, they did not get enough support from services and were not told enough information about if or why their child was being removed from their care. In Bath some of the mothers received good support as their children were born in a hospital where the nurses have a trained background knowledge of mental health, which led to them receiving good support. In London they have some good advocacy services. The focus group was mixed, with some mums getting to keep their children because of this good advocacy support, but some unfortunately didn’t. Overall every group said that they think that training needs to be given so that staff understand mums with learning disabilities, and that this training needs to be given by parents with learning disabilities.”
Catherine Carter, CHANGE
To see how feedback from parents with learning disabilities can be actioned, and used to channel into service recommendations and care improvements read Ruth Evans, Founder of Patient Experience Network’s (PEN) blog 10 steps to delivering high quality maternity care to parents with learning disabilities
CHANGE is a national human rights organisation led by disabled people. CHANGE employs people with learning disabilities to co-lead and work alongside a non-learning disabled colleague for an equal salary. People with learning disabilities at CHANGE using their expertise to educate health and social care professionals to improve their practise. CHANGE supports people with learning disabilities to consult peers and lead projects to tackle discrimination and participation in society fully as equals.
About Patient Experience Network (PEN)
Patient Experience Network (PEN) is a not for profit organisation whose ambition is to recognise, celebrate and share what is working well in the experience of care. PEN has written a series of reports to highlight the great work in the maternity experience of care, children’s and young people’s services and the experiences of families with children who are long term ventilated, amongst others.