Lucie’s story

Emma’s death should not be in vain.

Lucie’s story (Surrey)

There are no words to describe losing a sibling at such a young age; and this loss is even more tragic because I know with the right support my big sister’s passing could have been avoided. If she’d received the perinatal mental care she needed after her son’s birth, she would still be here today.

But in the UK, the sad reality is that many new mums are suffering with perinatal mental health issues on their own. Statistically, depression and anxiety affects 15 to 20% of women in the first year after childbirth, but many cases of perinatal depression and anxiety still go undetected.

Mental health is still taboo

As a young mum, I’ve witnessed this prevalence first hand. A few weeks ago, I looked around the small toddler group I attend and realised there were at least three mums who had spoken to me about their perinatal mental health issues, and they were just the ones who had confided in me.

Unfortunately, in our culture, mental health remains a taboo that we feel the need to hide and often have secret internal battles with. But if the mums I meet every week didn’t have to put on a brave face and knew they weren’t the only person in the room struggling, they’d all have an immediate support network.

We must push for change

As well as getting more people to talk about mental health before and after birth, it’s vital all women in the UK who experience perinatal mental illness receive the care they and their families need. I know if it was me who had died, Emma would have tirelessly pushed for this change.

That’s why I wanted to share my story and wholeheartedly support the Everyone’s Business campaign. For me, Emma’s death should not be in vain. We owe it to her and her son to prevent the mental ill health of other pregnant and postnatal women going unrecognised, undiagnosed and untreated.

 

If the content of this story causes you to think of anything that has happened to you or someone you know and you feel upset, worried or uncomfortable, please see our support page for a list of services who may be able to help.

Dani’s story

I was very fortunate that I was able to get the support that I needed.

Dani’s story (Belfast)

I felt great at the start of my first pregnancy. But at six to seven months I developed a liver problem and my blood pressure started to go up. I was put on tablets and believed, maybe naively, that everything was okay.

Then, during the birth of my daughter, I had an eclamptic seizure. I can remember the midwife pressing the red button, lots of shouting, the blue spinal board, and then waking up coughing, because of the tube in my throat.

“What I don’t remember are my first moments with my baby.”

Crippling anxiety

One month after I gave birth, I started to have flashbacks and recurring dreams about the seizure. I told my community midwife which led to me being monitored through watchful waiting. I then lost sensation down my right side and felt breathless, which led to me being admitted to hospital one week before Christmas. I was now separated from my 10-week-old daughter, which meant her breastfeeding was abruptly stopped.

“It was the worst Christmas ever.”

In A&E and on the ward I felt terrified and very anxious, but I assumed everything would settle down once I got home. It didn’t. I had crippling anxiety; my chest felt tight; I felt shaky and vomited; I didn’t want to be left on my own; and I continued to have flashbacks. I just didn’t feel like me and all my confidence was gone. Eventually, during the Christmas holidays, I contacted my midwife for help. Thankfully, I was referred quickly to a specialist perinatal mental health community team clinical psychologist who diagnosed me with PTSD [post-traumatic stress disorder].

Taking back control

With the perinatal psychologist I started CBT [cognitive behavioural therapy], which involved doing mindfulness and breathing exercises, and using visualisation techniques. This helped me to rationalise my anxiety and break the cycle of negativity. It was the biggest part of my recovery, giving me back a sense of control.

Over time, my physical symptoms started to ease and the good days gradually increased. I then had a couple of appointments with my psychologist during my second pregnancy, which me helped a lot. But unfortunately, I did have another traumatic experience during the birth of my third child.

Once again, I turned to my perinatal psychologist for help. This time it was a lot easier to manage my symptoms because of what I’d learnt previously, and because I knew support was available.

“Sadly, though, I know my experience is the exception, not the norm.”

In 80% of Northern Ireland, women and their families cannot access specialist perinatal mental health services and we also don’t have a Mother and Baby Unit. I believe this must change, because I don’t know how I would have coped without the support I received.

 

If the content of this story causes you to think of anything that has happened to you or someone you know and you feel upset, worried or uncomfortable, please see our support page for a list of services who may be able to help.

Lindsey’s story

Without doubt, we need a dedicated Mother and Baby Unit (MBU) in Northern Ireland and maternal mental health must be discussed at every hospital appointment and in antenatal classes.

Lindsey’s story (County Down)

I was a new, first-time mum with a five-month-old son when I found out I was nine weeks pregnant with twin girls. My husband and I got the shock of our lives, and throughout my pregnancy I experienced perinatal anxiety, as I was unsure how we would cope.

After the birth of the twins, my anxiety continued to grow. Life was really tough. I was constantly tired and chasing my tail to do the simplest of tasks. Thankfully, I started to reach out for help when I knew I could no longer cope.

Guided along the right path

My GP was a fantastic support to me, and helped me get back on track after I was diagnosed with perinatal anxiety and stress, and having panic attacks. My health visitor also referred me to a local Home-Start charity group. This led to a volunteer helping me with the kids and other practical stuff, as well as being someone who would just listen to my worries.

I also joined the Home-Start family group, which me and the kids continue to attend. This offers a great opportunity to meet other inspiring mums and talk to people who understand what I’m going through. And I can’t forget my family and friends, who were, and still are, absolute heroes because of the amazing kindness and unforgettable support they’ve shown me.

Much more support is needed

But I do know I’m extremely lucky. I managed to reach out, and I managed to receive the perinatal mental health support I needed. But there are many women in similar situations who feel they can’t speak out and ask for help. That’s why I want to do all I can to give them a voice and make sure they receive the support they need.

Maternity wards need informed perinatal mental health clinicians, so mums can quickly chat over their concerns and I believe dads need access to free courses on how to support the mental health of their partners.

Without doubt, we need a dedicated Mother and Baby Unit (MBU) in Northern Ireland and maternal mental health must be discussed at every hospital appointment and in antenatal classes.

There’s a lot we can do, and we need to do it now.

 

You can follow Lindsey on Twitter @elinshall.

If the content of this story causes you to think of anything that has happened to you or someone you know and you feel upset, worried or uncomfortable, please see our support page for a list of services who may be able to help.

Charlotte’s story

I feel the fear of having your baby taken away is a real worry for new mothers with mental health problems.

Charlotte’s story (Cardiff)

Following the birth of my son in 2012 I felt very unwell mentally. However, because Wales’ only mother and baby unit (MBU) in Cardiff was closed, I faced being admitted to an adult psychiatric ward without my baby. At that point, I completely broke down and said I was going nowhere without my child.

Hallucinations and paranoia

Following this event, I started to be treated at home. Sadly, things took a turn for the worse and I began to experience hallucinations and paranoia. At one point, I was listening to a news broadcast on the radio and heard a voice say, “Charlotte, I’m talking to you. Get them men out of your house. They’re going to hurt you and your baby.”

I got up, ran to the kitchen and started to shout at my husband, saying that I wanted him out of the house because he was going to hurt me and my baby. Richard told me that the radio wasn’t even on. That it was unplugged. It was frightening stuff. Horrible.

Treated for 18 months

Eventually I was diagnosed with postpartum psychosis, and went on to be treated for it at home for one and a half years. If the MBU in Cardiff had still been open, it’s possible my condition could have been treated in around 12 weeks.

This is why I’m determined to get the unit reopened. Women need it. They should never have to face the possibility of being parted from their children to get the support they need. The fear of having your baby taken away is a real worry for new mothers with mental health problems, so a lot of them suffer in silence which leads to problems becoming more severe.

 

If the content of this story causes you to think of anything that has happened to you or someone you know and you feel upset, worried or uncomfortable, please see our support page for a list of services who may be able to help.

Lyn’s story

My participation in the Everyone’s Business campaign is a way I can honour the loss of Rebecca and try to make things better.

Lyn’s story (Kent)

Losing my beautiful daughter, Rebecca, to perinatal suicide came as a complete shock. She had no history of mental ill health and no problems. She had everything to live for, and yet she took her life. What chance then do mothers with existing mental health difficulties or a previous history have?

We must learn from this and better support mothers by detecting the first signs of not coping earlier and preventing this from escalating. 

Making a difference together

As a family, I can’t begin to describe the trauma and loss we have felt. It is so desolating and knowing that Rebecca can’t enjoy her baby son growing up is incredibly difficult. That’s why it was such a great relief to come across the Everyone’s Business campaign and become a champion for the Maternal Mental Health Alliance. 

By campaigning alongside other people with similar experiences, I feel like I’m doing my part to ensure that all women in the UK who are affected by perinatal mental health problems receive the care they and their families need, no matter what their level of need is or where they live. 

End unnecessary suffering

For me, my participation in the campaign is a way I can honour the loss of Rebecca and try to make things better. I want to ensure essential information is shared and vital services across the care pathway are funded so the unnecessary suffering of mothers, their babies and families is avoided.

 

If the content of this story causes you to think of anything that has happened to you or someone you know and you feel upset, worried or uncomfortable, please see our support page for a list of services who may be able to help.

Hazel’s story

Everyone throughout the UK should have access to the services they need, no matter what their postcode is.

Hazel’s story (Falkirk)

Following the birth of my second baby, I experienced postnatal depression. But in the Fife area, where I was living at the time, there were no services to support me. After I asked my GP for help, I was given anti-depressants and sent away. The effect of this was that my attachment to my son suffered and I struggled with mental health problems for the next six years.

When I had my third child, everything was different. As I was now living in the Forth Valley, and was registered as high risk, I was supported by a great health visitor and NHS Forth Valley’s perinatal mental health team, and I could easily access Aberlour Perinatal Befriending Support Service.

A different experience

Aberlour basically changed my life. I built up a great relationship with a befriender, who I trusted 100%. She helped to boost my confidence as a parent, showed me it was okay to talk about my worries, and provided me with lots of practical mental health tips. I also found talking through things with the perinatal mental health team a huge help, and they provided me with coping strategies.

Having access to these wonderful services means my mental health has improved a lot. I now have a great attachment to my children, and life, in general, is not as much of a struggle as it was.

Equal access for all

I do know, though, that I only got the care and support I needed because I’d moved to the Forth Valley – a situation that isn’t right. I think everyone throughout the UK should have access to the services they need, no matter what their postcode is.

Much more must be done to make perinatal mental health teams available in people’s local areas. Maternity staff, GPs, health visitors and nurses all need to be educated more about perinatal mental health, the signs to look out for, and who they should refer women and their families to. These steps would change so many lives.

 

If the content of this story causes you to think of anything that has happened to you or someone you know and you feel upset, worried or uncomfortable, please see our support page for a list of services who may be able to help.

Clare’s story

I couldn’t sleep, even when the baby slept, and during my daughter’s ninth week of life I didn’t sleep for three nights in a row. At this point, my community psychiatric nurse suggested, “A wee stay in the mother and baby unit”.

Clare’s story (Glasgow)

During my pregnancy with my daughter, I felt very little – no excitement, no anticipation, no fear. I was mildly concerned about this, so I mentioned it to my midwife, who referred me to my local perinatal mental health service. There, a community psychiatric nurse (CPN) helped me understand that I didn’t have to be excited but made it clear that support would be available after the birth, if I needed it.

I felt no peace

My labour was long, and eventually I had an emergency caesarean. This experience, coupled with the total shock of being responsible for this little human, meant I quickly became very anxious and hypervigilant. As a result, I couldn’t sleep, even when the baby slept, and during my daughter’s ninth week of life I didn’t sleep for three nights in a row. At this point, my CPN suggested, “A wee stay in the mother and baby unit”.

At the unit, I lived from hour-to-hour, taking medicine, doing baby massage, going for walks and talking to the nurses about the journey I was on. I also had visits home, but I found these terrifying. Although I didn’t want to be in the unit, I didn’t want to be home too. I didn’t want to be anywhere. I felt peace nowhere.

Fabulous, ongoing support

After five weeks, I finally did go home, which was followed by a year of care from the community team at the perinatal mental health service. This involved weekly visits from a CPN, who offered me lots of reassurance and talked about what I wanted to talk about. All of these things allowed me to build a relationship with my daughter, which is so precious to me now.

Today, six years on, I’m extremely thankful for the fabulous care I received from the perinatal mental health team at NHS Greater Glasgow and Clyde. My positive experience is something I’d like to use to help other women and families because across Scotland there is a huge disparity in perinatal mental health services. I hope that the promised funding for perinatal and infant mental health services in Scotland will make a big difference to women and families.

 

If the content of this story causes you to think of anything that has happened to you or someone you know and you feel upset, worried or uncomfortable, please see our support page for a list of services who may be able to help.

 

Elaine’s story

I ended up staying in a general psychiatric hospital for eight weeks…Being cared for without my son was not ideal.

Elaine’s story (Chester)

The birth of my son was very difficult. I had a retained placenta, which led to me haemorrhaging after he was born. A consequence of this traumatic experience was that I developed mild to severe postnatal depression, which eventually led to psychosis when my son was seven months old.

Given electroconvulsive therapy

Before my psychotic episode, I’d spoken to my GP, who prescribed me anti-depressants. I also joined a support group for six weeks. But things escalated and I ended up staying in a general psychiatric hospital for eight weeks. Being hospitalised without my baby was extremely difficult, and especially because I had to stop breastfeeding overnight. During my stay in the hospital, I was given ECT [electroconvulsive therapy] and worked with an occupational therapist. Following discharge, I was visited by a community psychiatric nurse.

More and better services

Being cared for without my son was not ideal. There needed to be more awareness then, as there needs to be more awareness now, of how perinatal mental health problems affect a woman and her family. We need to get more and even better specialist perinatal mental health services commissioned. If my feelings of shame had been effectively treated early on, and my family had been advised of ways to help me, I believe I would not have become so ill.

 

If the content of this story causes you to think of anything that has happened to you or someone you know and you feel upset, worried or uncomfortable, please see our support page for a list of services who may be able to help.

Charlie’s story

We need to put pressure on CCGs to provide more funding for sustainable services that are fit for purpose.

Charlie’s story (Bridport)

With all three of my children I struggled with perinatal mental health problems, including postnatal depression and post-traumatic stress disorder. During these extremely difficult times, I received excellent support from a number of specialist perinatal mental health professionals. They included those working at my Mother and Baby Unit, midwives, community psychiatric nurses and health visitors. However, it was a struggle to get the help I needed; and the non-specialist support I was offered simply did not appreciate the intricacies of perinatal mental health.

Bonding activities

Something else that really helped me was a group called Growing Together at the children’s centre in Bridport. It was an intimate group of no more than eight families. Each week we went for an hour and a half and carried out a task to help us bond with our babies. We also made a scrap book, which we added to each week, reflecting on our activities and printing hand prints of our babies. The staff also took photos of us to put in it. It was great to be able to look back on and see how far we had come in terms of bonding and attachment and our mental health recovery.

More services needed

There are services out there which can help women suffering with perinatal mental health problems. But there simply aren’t enough of them; and if they are available, women are often struggling to access them. We need to put pressure on Clinical Commissioning Groups to provide more funding for sustainable services that are fit for purpose and which all women in need can access. I also think there’s an urgent need for greater help for the families of these women. My husband did not receive support from anyone, and that is a huge flaw in the system too.

 

If the content of this story causes you to think of anything that has happened to you or someone you know and you feel upset, worried or uncomfortable, please see our support page for a list of services who may be able to help.

Kirsten’s story

I believe every mother is entitled to receive the level of support I received during my second pregnancy.

Kirsten’s story (Peterborough)

The symptoms I showed during the pregnancy of my first child included OCD, general anxiety and low mood. I spoke to 11 different professionals before I started to receive help. This left me feeling exhausted, and I couldn’t understand why I had to tell my story so many times, and why I was the one trying to organise and get help.

Life-changing care

When my baby was a week old I finally met a perinatal mental health nurse. Straightaway everything began to change for the better. And when I became pregnant with my second child, I had an amazing support experience.

I was referred to the perinatal mental health team at my first midwife appointment. The perinatal mental health nurse who began supporting me was the same one from my first pregnancy, so she understood the problems I was facing. She also arranged for me to have a specialist midwife, who worked closely with the perinatal nurse to coordinate my care.

The nurse also arranged for me to see a psychiatrist to do a medication check, and I worked with a psychologist for nine months. Overall, the care was seamless and they gave me the best help, support and advice.

Need equal access

Because of my experiences, I know how having access to the right services can be life changing for the whole family. I believe every mother is entitled to receive the level of support I received during my second pregnancy. There needs to be more awareness and understanding of the severity of the issue, and CCGs [clinical commissioning groups] and service commissioners need to recognise the role they can play in improving the situation.

 

If the content of this story causes you to think of anything that has happened to you or someone you know and you feel upset, worried or uncomfortable, please see our support page for a list of services who may be able to help.