Waiting, waiting, waiting: accessing mental health services after miscarriage

Given that I’ve just started psychotherapy, 15 months after my first miscarriage, I thought now would be a good time to talk about accessing mental health support via the NHS in England. 

Don’t get me wrong, there are plenty of fantastic things about the National Health Service, the fact that it’s free, for one. Its staff members are, at least in my experience, caring and friendly and really want to make you feel better. Services are generally local and accessible.

However, there are also negative aspects to our chronically under-funded NHS. Waiting times are one area where many of us UK-based patients tear our hair out. When you wait a fortnight to see a GP, only to be told you are being referred to another waiting list, which will, in all likelihood, then result in a third waiting list, it’s no surprise we can end up feeling pretty despondent. 

NHS funding for mental health services

One of the most stretched services in recent years is mental health. While funding isn’t necessarily being cut, demand has increased exponentially and services just cannot cope. 

There are plenty of headlines shouting about how Politician X has promised £X more funding for this service. Only last weekend, the government promised £70million of funding for 1000 new community mental health workers. This is part of a larger promise to boost funding by almost £1 billion, to bring additional spending on mental health up by £2.3 billion per year, as promised in the NHS Long-Term Plan.  

It all sounds great, but just how much of a different will this make on the ground? And how long will increases in spending take to trickle down to where they are most needed? 

Plus, of course, there is the legacy that long-term lack of funding leaves behind. NHS Providers, an organisation that represents healthcare trusts in England, said the current £6billion per year spent on mental health services needs to double over the next 5-10 years to cope with demand.

Around pregnancy loss and mental health, the Baby Loss Awareness Alliance is about to launch a campaign ‘Out of Sight, Out of Mind’, which states that women should be able to access the psychological help they need via the NHS, and without unreasonably long waiting times. That’s a pretty basic expectation, and yet depressingly it’s far from being met at this time. A debate is expected in Westminster on 8 October 2019.

My route(s) to psychological support

After my first miscarriage, I decided that I would work through my grief without professional support, so I didn’t seek help at this point. However, after my second miscarriage, a pregnancy of unknown location that dragged on for weeks, I was feeling brittle and having difficulties coping with normal day-to-day life, and so I decided that asking for help would be a good idea. 

The literature I had been given at St Mary’s hospital in Manchester said that there was a dedicated Recurrent Miscarriage Counsellor available at the hospital, which I would be eligible for, so that was my first port of call. Unfortunately, I soon found out that the role was vacant, as the counsellor was on long term sick leave. I was told that, as a temporary measure, women had been referred to a bereavement service at the adjoining Children’s Hospital, but that because there had been such demand, the waiting list had now been closed. 

I was advised to put in a complaint to the Patient Advice and Liaison Service (PALS) saying that I did not feel the long-term vacancy in the Recurrent Miscarriage Counsellor position was acceptable, which I did the same day. I received a response which said that – as a one off – the waiting list at the Children’s Hospital had been reopened for me, and that I could expect to receive a date for my first appointment in around 3 months’ time. 

While I appreciated the fact that I was now at least on a waiting list, what about all the other women who were in the same situation as me, but did not receive this ‘special treatment’? It seemed by complaining I had benefitted myself, but that the wider issue of lack of support was not being addressed at all. 

Feeling that a 3 month wait at this point was not something I was prepared for, I went to see my GP to ask about being referred for help via an alternative route. 

I was advised to self-refer to Trafford Psychological Therapies where I would be assessed and referred on for appropriate therapy. I was given an assessment relatively quickly – within 2 or 3 weeks. The assessment was telephone-based and lasted around an hour, after which I was told that I was eligible for both counselling and Cognitive Behavioural Therapy (CBT), but that I could only be referred for one at a time and that CBT had shorter waiting times. So I agreed to be added to the CBT waiting list and at that stage, was told that waiting times were currently 15 weeks – almost 4 months.

Again, I was left wondering ‘what now?’ I was struggling to come to terms with my miscarriages, scared to try again, yet desperately wanting to be pregnant, and was soon to be turning 40. And although I am lucky to have great support in my husband and close friends, I still felt that I needed professional support to help me through this time.

Trafford Psychological Therapies had sent me some information on private counselling that they thought may be helpful. Apparently the cost was worked on a sliding scale depending on your income, so could be a possibility for us – although it was still less than ideal given that these services should, at least theoretically, be available on the NHS for free.

A week later, I had my one and only private counselling session. It cost me £30 and after pouring my heart out for an hour, the counsellor seemed to overlook the struggles I was having emotionally around my miscarriages and instead summarised that I would need some support whilst trying to buy a house. I was baffled! Had she even been listening? That, and the fact that I would have to commit to weekly sessions, which at £120 a month I couldn’t afford, helped me conclude that this was not the right path for me, and so I returned to waiting for NHS support. 

Eventually, when January 2019 rolled around, and I had been on the CBT and Children’s Hospital waiting list for almost 3 months apiece, I chased both up. Turns out I was on the wrong waiting list in Trafford, and my referral was at an unknown stage at the hospital. However, within 2 days of chasing up the hospital, I was offered an appointment. And around two weeks later, I received a date for my first CBT appointment. Not very confidence-inspiring but at least I now felt I was getting somewhere!

I began both sets of treatment feeling positive. 

The 3 sessions of counselling I had did help me in some ways. I cried and vented more openly than I had up until that point. I felt I could be angry, sad and all the emotions that aren’t so attractive in normal life. However, I found the person-centred approach difficult, as I was not offered any input or feedback. 

CBT was working well but as it had been specifically ‘prescribed’ for social anxiety, I couldn’t steer it towards any of my miscarriage-related anxieties, so it was little help with that aspect of my life. And when I became pregnant again during treatment and then suffered another miscarriage, I stopped treatment as I was experiencing too much anxiety to continue.

Moving house, and area, in July of this year meant beginning anew the process of accessing psychological support, as services dont’t work across CCG boundaries (or at least didn’t in my case). This time an assessment took 2 months, and I’m now on another waiting list for counselling. However, this time I was not given an anticipated wait time, as apparently this ‘gives people too many expectations’. So I’m not holding my breath! 

Which brings me to my latest route to professional help – private psychotherapy. I’ve finally accepted that to access the help I need, I will have to pay for it. It’s not ideal, and it angers me that because of lack of funding, these vital services are left to fail. 

Women who suffer pregnancy loss are at higher risk of developing mental health issues such as anxiety and depression and many women also show symptoms of Post Traumatic Stress Disorder (PTSD) more usually associated with veterans. Yet without sufficient funding, these women are being left to deal with the pain, the guilt, the fear and uncertainty alone, without the mental health support that can have such a positive impact when trying to move on after bereavement. 

This isn’t how it should be. Not at all.