Posted on: 21 October 2021
Welcome Sakina. You’ve recently joined CNWL as an Advanced Lived Experience Practitioner for our Perinatal Services. What will you be doing in this role?
Sakina: The hope is to enhance service user voices within CNWL’s Perinatal services. I will use my lived experience to work directly with service users, introducing peer support workers into each perinatal mental health team, facilitating co-production and championing service user voices.
Can you talk about your own perinatal story and the challenges you’ve faced?
S: After what appeared to be a straight forward pregnancy, I experienced a traumatic birth that led to postnatal trauma and feeding trauma. Despite having taken antenatal classes and read all the books, psychological preparation, risk factors for birth trauma and maternal mental health challenges were never discussed or presented to me. Therefore, I had no idea what was happening, despite knowing something was wrong.
I appeared like I was coping so there was no enquiry into my actual wellbeing – the focus was only on my baby. Like many new mothers, I felt a strong sense of pressure to cope and feared that if I failed to cope, I was falling into the stigmatising social narrative that I wasn’t ‘being a good mother’.
We went to appointments but saw a different person every time – each with a different opinion. I was so desperate to ‘fix what was wrong’ but everyone was offering different advice and I was scared of the consequences of asking for help. Maternal mental health was not something I was aware of.
How was your second pregnancy experience different?
S: I was sc
ared about re-experiencing a traumatic birth with my second pregnancy so I asked again for talking therapy and was given perinatal Cognitive Behavioural Therapy via Improving Access to Psychological Therapies (IAPT) for 12 weeks spanning antenatal, birth and postnatal. I was assessed and misdiagnosed with postnatal depression. As a result, I didn’t receive appropriate treatment.
I was given a Post Traumatic Stress Disorder assessment and diagnosis after two further rounds of IAPT treatment. Having a diagnosis that finally made sense prompted me to take ownership of my recovery journey. Despite the challenges, my second pregnancy (birth and postnatal) felt like a healing experience, as I had continuity of care, I felt more empowered and informed and I was held safely by Cecile, my midwife.
Perinatal issues don’t just happen to the individual; they happen to the entire family system. When a mother is in distress, it effects their partner, and particularly the baby’s development. My recovery support was gained by persistence and a willingness to push for ongoing relational therapy, both in and out of the NHS. I recognise that this isn’t possible for everyone so striving for more equitable and accessible services is something I am passionate about.
When did you decide that you wanted to work in perinatal healthcare?
S: Shortly after the birth of my second son. I was keen to explore how perinatal challenges could be managed to ensure a safe, secure and hopeful experience for people, whilst enabling individuals to maintain agency.
Over the past several years you’ve gained experience in a number of perinatal areas. What have your experiences taught you?
S: In 2016, I trained as a Hypnobirthing teacher and began Trauma Informed Antenatal Education with the Real Birth Project. Simultaneously, I established peer support groups for Birth Trauma – these were developed with a tight framework of safety and proved to fill a gap. I also became co-chair for Croydon Maternity Voices Partnership (MVP) and a service user voice for NHS England Maternity Transformation Programme for the Continuity of Carer workstream and on Health Education England’s Trauma Informed Care working group.
These experiences highlighted the need to see people as human beings who are rich in experience and possibility – not just defined by their job or diagnosis. Everyone has a story to bring to this conversation which can inform how we navigate safety and ensure genuine person-centred care.
How are you hoping to increase co-production and service user engagement in CNWL’s perinatal services?
S: This is an area I’m really excited by because it helps bridge some of the gaps between patients and professionals. Even in my first few weeks, so many ideas for perinatal co-production have been welcomed. I want to bring the voices of our local communities and our clinicians together to support the development of effective services that meet the needs of all who work for and use them. This means appreciating that clinicians can also be service users and vice versa.
We want to reach as many past and present service users as possible, whether that be through clinical care or general signposting, so they can tell us what’s gone well and what’s been missing from their care, so we can continue to learn, grow and develop in supporting our communities.
Can CNWL staff and stakeholders help to promote this work?
S: Yes please! Feel free to pass on this link if there are patients who want to feedback into our perinatal services – we want this to be an open and collaborative conversation.
If you’ve had a journey with a CNWL Perinatal Mental Health Team we would love to hear your experiences and thoughts to help us shape our services now and in the future. It is a welcoming and safe place to help shape change and we reimburse you for your time.
Click here for details on how to join
Photo Credits
- Natalya Chagrin
- Susan Power