Square Peg Round Hole

Perinatal mental health services have been in the news today – or rather, the lack of them.

As has been reported in The Guardian, the National Childbirth Trust (NCT) found that half of the 193 trusts across England who responded to a freedom of information (FOI) requests said they do not offer any formal perinatal mental health service.

Postnatal mental health illnesses, which can include postnatal depression and psychosis presents significant problems for new mothers. Lack of support means that many of those affected are unable to fully enjoy those precious early months with their new baby, and tragically some take their own lives because they feel unable to cope.

Clinical management and service guidance for antenatal and postnatal mental health issued by the National Institute for Clinical Excellence (NICE) as long ago as February 2007 said that women who are depressed after giving birth should receive specialist help. However, according to the FoI responses, seven years after these guidelines were issued only five of the Clinical Commissioning Groups (CCGs, who are responsible for deciding where NHS money is spent locally) have a strategy for providing these services.

According to Rebecca Cotton, director of mental health policy at the NHS Confederation quoted in the Guardian’s article: “Across the country there are some great specialist perinatal mental health services providing fantastic support. Sadly, there just aren’t enough.”

Unfortunately for me Bedford, where I live, is one of the areas to lack a perinatal mental health strategy. Finding support for my own postnatal mental health problems has been challenging.

In February this year I had HELLP syndrome which is a rare, life-threatening pregnancy complication that meant my son had to be delivered at just 24 weeks. Hugo fought hard for his life, but died in my arms 35 days later.

Hugo

Hugo

I am fortunate that the condition was caught in time and I have made a full physical recovery.

The triple-whammy of critical illness, traumatic birth and my son’s resulting death has left a deep psychological legacy. My issues are many and complex.

I have experienced flashbacks related to my time in hospital and to my son’s death. I suffer from great anxiety, with a constant feeling that something bad will happen. I have panic attacks, especially when faced with babies. I have been in a deep depression, unable to take enjoyment or interest in many things, other than those directly related to these events. My interest in the events is almost obsessive, but I am going with it because writing has been cathartic, and a great therapy – especially in the absence of any other therapy.

In the awful early days after Hugo’s death I called many organisations trying to get grief counselling, but to no avail. I have lost count of the amount of time I have explained my story to health professionals (including GPs, health visitors and a midwife) and counsellors. Not surprisingly, I find recounting many specific details traumatic.

The NICE guidelines for antenatal and postnatal mental health state that: “Healthcare professionals should ensure that adequate systems are in place to ensure continuity of care and effective transfer of information, to reduce the need for multiple assessments.”

Unfortunately, access to mental health services in my area feels as complex as my issues.

Hugo having a skin-to-skin cuddle with me.

Hugo having a skin-to-skin cuddle with me.

Thanks to a mix-up by my well-meaning GP practice, I was referred to both primary and secondary mental health services.

I saw a mental health nurse from the secondary service first. She admitted she had never heard of HELLP syndrome before. While she had taken the time prior to the appointment to look up what the acronym stands for, she clearly had no real understanding of the seriousness of it, or what the fuss was about.

Her assessment was that my resulting problems were ‘normal’ in the circumstances. That may well be the case, but such an assessment does nothing to help me recover. I felt she had no idea about what to do with me, and we had no rapport.

I had also received an appointment card through the post to see a psychiatrist – she said she didn’t know what the purpose of that appointment was. However, when I saw the psychiatrist he said seeing the nurse was a triage prerequisite for seeing him. If staff don’t understand their own service, there is little hope for patients.

The psychiatrist diagnosed with post-traumatic stress, anxiety and depression. He has referred me for psychotherapy. Because I’m not suicidal, I’m low-risk and low-priority, meaning this referral could take as long as three months. Even from the first appointment the recovery will be a long road.

The primary mental health service also got in touch, offering me a telephone assessment. I booked the appointment, completed the questionnaire and psyched myself up to explain the story, yet again. The lady I spoke to was very kind and apologetic but said that as I am with secondary mental health services, they couldn’t see me.

So, I am too ill for primary care mental health, but not ill enough to be a priority for secondary mental health. I feel like a square peg in a round hole.

I can’t help thinking the road would be easier with a specialist perinatal mental health service.

A kind mental health social worker offered some cognitive behaviour therapy (CBT) sessions to help tide me over while I am waiting for the psychotherapy. This was helpful up to a point, and gave me some tools to deal with general situations that cause me anxiety. However, we both agreed that I need specialist help to deal with the baby-related panic attacks – that aspect needs more than going through ‘pro and con’ and ‘what would you tell a friend in a similar situation?’ exercises.

Hugo

Hugo

The psychiatrist recommended I get in touch with a counselling charity in Cambridgeshire that specialises in baby loss. Their resources are limited, and they often don’t see women from outside of that county. I am fortunate that they have taken me on, and I have my first appointment with them later this month. My contact with them so far has been by email, and I have sent them Hugo’s Story so they have some background – although I am sure I will have to go through it all again.

From my experiences, access to mental health services in general is a jumbled mess, seemingly designed to make it as complicated as possible for the patient. It seems you need real tenacity, determination and motivation to get anywhere.

Due to the stigma that surrounds any kind of mental health issues many people struggle to ask for help in the first place. I do worry about how many people find it all too much of a bother and fall between the cracks.

It seems that mental health services do not receive the same attention or investment as services for physical illnesses. This seems a short-sighted approach: just like many physical illnesses, early diagnosis, intervention and treatment can lead to a good outcome. With the right care and treatment, the patient is likely to make a full recovery, or if not be better able to live a full life.

The lack of investment in perinatal mental health services is appalling. I am dealing with issues resulting from not having a baby in my arms to care for. I feel for the mothers who are struggling to deal with postnatal mental illness while caring for a little one, too.

Suicide in the first year after birth is a leading cause of death for mothers. I would like to reassure my family and friends who I know already worry about me that I am not suicidal. HELLP syndrome is enough of a near-death experience for me. I also feel like I owe it to Hugo, my little boy who was so full of life, to recover and make the most of mine.

However, this way out does become reality for some mothers who don’t get the help they need. We are already part of the one in four who experience mental health issues. Don’t turn us in to another, more tragic statistic.

4 thoughts on “Square Peg Round Hole

  1. Sarah says:

    You’re so incredibly brave Leigh. I’m sorry that you’ve to fight for such a necessary service. You’ll be such a great asset to First Touch & can help others with your strength & determination xx

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  2. meghanoc says:

    OH- you poor thing! what a struggle it is to get some basic services! PTSD is a very very common condition a lot of moms face after merely having an emergency c-section- add to that a preterm birth, a life threatening illness, having a critically ill baby and the death of your child. It is so frustrating to see what you have to go through!. Here is the US, where the health care system is a bit different, I see patients who I know need the help of therapy and or psychiatrist. I can identify at leas that, but sometime struggle as to where to refer them that is covered by their insurance.

    And I understand having to advocate for yourself. I had some practitioners tell me what I was feeling was normal and I had to advocate that I needed a med change. Luckily I found sympathetic ears (medicating grief is another topic- I’m speaking only about mental illness in the setting of grief). I hope you too can find sympathetic ears.

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    • Leigh Kendall says:

      Gosh – at least with the NHS I don’t have to worry about how I am going to pay for it. Thank you. It’s incredibly frustrating, but I hope I will get there in the end xxx

      Like

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