Barriers to treatment for pregnant women who use drugs
Women who use drugs can find it difficult to access appropriate services. Just 31% of people in treatment in England last year were women. This can be even more difficult for women who are pregnant. The SSA’s Rob Calder talks to specialist midwife Anna Ferguson about best practice in working with pregnant women who use drugs.
Actually, it’s not quite fair to say that women find it difficult. It implies that people who have found services too difficult to attend, have somehow tried and failed. It is incumbent on treatment services to become more accessible and to do even more to provide for pregnant women who use drugs.
Anna Ferguson works as a specialist midwife at University Hospitals Sussex NHS Foundation Trust, she is the lead midwife in the One-Stop-Clinic which runs at the Royal Sussex County Hospital in Brighton, and the Princess Royal Hospital in Haywards Heath. Anna and the team go the extra mile to make sure that pregnant women who use drugs get the support they need. The One-Stop-Clinic is a multi-disciplinary, multi-agency clinic that provides care for pregnant women and people who have substance use issues in pregnancy. Consultant neonatologist Dr. Neil Aiton founded the clinic about 15 years ago, and it provides antenatal, postnatal and neonatal care.
The array of appointments, departments and healthcare professionals involved in any pregnancy can be overwhelming. The team works with social workers, probation, specialist consultants, addiction treatment services and outreach teams. The One-Stop-Clinic addresses barriers to treatment and does so in one place.
At the clinic, there are consultants who reassure women, and medical health professionals, that all the evidence suggests that methadone is safe for use in pregnancy.
Is important to note that pregnant women who use drugs or alcohol are often highly motivated to access services and that they do so despite many barriers and complicating factors. Motivation often comes from concern for the health of their baby. Like most parents-to-be, they desperately want their baby to be healthy and well. For some, becoming pregnant increases their existing motivation, making them more likely to seek help. Many are also encouraged by their partner to do so. The motivation, determination and resilience of many pregnant women who use drugs to access support – despite the barriers, stigma and risks – should not go unnoticed.
Fears around custody of the baby
Running through all the literature, and throughout the One-Stop team’s work, is the fear that social services or a partner or parent will take custody of the baby. Whilst this can motivate some women to access services, it can also have the opposite effect. Whether it is pregnancy services that know you use drugs, or addiction treatment services that know you are pregnant, or an A&E service that knows both, a referral to social services is a source of fear and anxiety. And whilst social services involvement can provide enormous support, the fear is constant. That fear can be compounded for women who have previously experienced having their children taken into care.
There is, Anna says, “a toxic mixture of guilt and shame, which can be exacerbated by a local authority emphasis on the baby”. Whilst this is understandable, as safeguarding is the local authority’s key focus, the woman at the centre of it all can end up feeling dehumanised and undeserving. The focus of specialist treatment centres – such as the one-stop-clinic – is on the welfare of the mother and the baby, and they work to keep families together.
Anna talks openly about the stigma that her patients can experience in healthcare settings; particularly in settings where medical staff are not experienced in working with people who use drugs. Stigma can be even more acute in services that are running at, and beyond, capacity. The combination of high work-loads and a perception of someone as ‘undeserving’ can be potent.
Stigma and judgemental attitudes vary from person to person. This diversity extends to health professionals. One study of medical students in Brussels found that 15 to 20% were in favour of punishment for drug or alcohol use during pregnancy. Those in favour were more likely to be male, older and with less experience of substance use disorders. If a pregnant woman sees 10 medical professionals, two may think she needs to be punished for using drugs and for being pregnant.
Anna and the One-Stop team try to provide effective outreach services too. They phone people to remind them of appointments, they pay for transport. They have worked with several pregnant clients who have been sleeping in tents on the beach.
Opioid substitution therapy
Most stigma is based on a lack of knowledge and understanding: “Issues can arise when working in a multi-disciplinary team. For example, a social worker may suggest – with the best intention – that a woman reduces her prescribed methadone too quickly in the postnatal period, as they see it as the woman is still ‘on drugs’. Our role is to educate, inform and share the evidence that reducing methadone at this point is not evidence based.” There is a limited knowledge base on substance use in pregnancy, and applying it sometimes comes down to personal views rather than evidence-based practice.
The One-Stop-Clinic encourages stability. There is enough going on in someone’s life without adding methadone withdrawal to that list. At the clinic, there are consultants who reassure women, and medical health professionals, that all the evidence suggests that methadone is safe for use in pregnancy. Pregnancies progress to normal length, and babies grow and develop normally. Continued use is in line with NICE guidelines and if there is neonatal dependence it can be treated and managed very effectively, without long-term negative consequences for the neonate.
Outside of NHS services, Anna is full of praise for the outreach services that work without stigma to get the best outcomes for women: “Community services do an absolutely brilliant job… because they already are non-judgemental and help women to engage. They are often instrumental in getting pregnant women and people in to see us as soon as possible. I would say to get them in to see us as soon as possible. What can make a massive difference is getting people to appointments, bus passes, taxis, calling people up, picking them up.”
Anna and the One-Stop team try to provide effective outreach services too. They phone people to remind them of appointments, they pay for transport. They have worked with several pregnant clients who have been sleeping in tents on the beach. Many people they see have a history of childhood trauma and abuse.
During COVID-19, the One-Stop-Clinic kept face-to-face clinics running. They also provided online and phone appointments where possible. They kept the clinics going, they met people online. But Anna admits that this hasn’t been ideal. “People need that in-person contact, particularly people with complex needs. It’s been a hard couple of years.”
There are NICE guidelines for pregnant women with complex social factors; this includes women who use drugs, who are young, who experience domestic abuse and who are migrants or asylum seekers. Many women will experience several of these issues and will therefore need more intensive, personalised and specialist support.
At the centre of the guidelines is the importance of making coordinated care plans and having a non-judgemental attitude; two principles that the team at the One-Stop-Clinic build into their work. The guidelines specifically highlight four important principles:
- integrating care from different services
- ensuring that the attitudes of staff do not prevent women from using services
- addressing women’s fears about the involvement of children’s services and potential removal of their child, by providing information tailored to their needs
- addressing women’s feelings of guilt about their misuse of substances and the potential effects on their baby
When it comes to providing the best services, this often comes back to commissioning. Local authorities need to provide, pay for and commission specialist services to help pregnant women who use drugs. And this is not always a priority:
“Not many areas have One-Stop-Clinics. There are more services in London, but these often do not caseload pregnant women and people. A few years ago, we had a Care Quality Commission (CQC) inspection, and it was highlighted as really good practice. The gold standard from the NICE guidelines. To improve services, it comes down to commissioning the right services. Sometimes change can have a positive effect on things, but what often happens is that things change just to make them cheaper, and this doesn’t always improve services for pregnant women.”
by Rob Calder
This article was published as part of The Pregnancy Edit for September 2021. If you are interested in writing a blog or participating in an interview about alcohol-related harm in pregnancy for the SSA website, please contact Natalie Davies at firstname.lastname@example.org.
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