Mental health services cause more distress than they solve

My journey seeking psychological support since my own life-threatening illness and the resulting death of my son earlier this year can best be described as a farce.

Today’s psychiatrist appointment was extraordinary, even by the standards that have previously been set, with the doctor bringing religion into the conversation, and refusing to write a repeat prescription for antidepressants for fear of getting in to trouble for spending the budget. Yes, seriously.

For the benefit of anyone who hasn’t been following my story, in February this year I was diagnosed with the rare, life-threatening pregnancy complications pre-eclampsia and HELLP syndrome when I was just 24 weeks’ pregnant. My son Hugo had to be delivered to save both our lives. Hugo fought incredibly hard for 35 days – he was just too small, and premature. I am heartbroken at the loss of my much-wanted, much-loved baby.

In June, I was diagnosed with post-traumatic stress disorder (PTSD), anxiety and depression. I have been referred for psychotherapy, and have received six sessions of formal counselling from a specialist pregnancy loss charity, Petals (that I had to source myself). My experiences with mental health services have been previously outlined in this post, and this post.

Mental health services in Bedford, where I live are provided by an organisation called SEPT, who describe themselves as “one of the most successful Foundation Trusts in the country providing integrated care including mental health, learning disability, social care and community services.” Local psychiatric services are provided in a wing of Bedford Hospital.

Today I had an appointment at noon. This was the third different psychiatrist I have seen since June. She introduced herself with her back to me while walking down the corridor on the way to her consultation room, so it was lucky I have her name written on my appointment card as I didn’t catch it.

On arriving in the room, I was invited to sit. While looking at the notes, not at me, she asked me how I was and I explained I was feeling a little low and teary thanks to a virus, on top of everything else. She then asked me how I was getting on with my medication – the dosage had been doubled at my last appointment, and I was struggling with the side-effects. I was told they would calm down after a while – fair enough.

What I really need, however is psychotherapy to help me deal with the underlying trauma. I was originally informed back in June the referral would take up to six months because it is oversubscribed, but this doctor told me it would take up to a year. Naturally, I expressed my frustration – the doctor said I would be better off going private. The same doctors provide private and NHS services, meaning it is likely in their interests to keep the NHS waiting list long. While I said working in the NHS I recognised how silly the system can be, I wasn’t really interested in a political debate.

What I really want is help to get better. She suggested I call the the Samaritans. I didn’t realise they offer counselling support for all sorts of reasons, not just those who are suicidal – but why should patients constantly have to seek their own support, and from so many sources? We deserve consistency of care.

Then I started to feel teary and said how much I miss Hugo. The doctor turned to me and said “God will give you another baby”, and said what happened to me is common. I could tell from her countenance that she meant to be kind, but bringing God into it was wholly inappropriate. If God is so generous with babies, why did my last pregnancy nearly kill me, and my baby die as a result?

Furthermore, what happened to me is not common – HELLP syndrome is, thankfully, very rare, as I told her. She looked at me quizzically and asked what it was, so I told her. She replied asking if that’s what affected Hugo, so I told her that technically yes, but the syndrome affected me meaning Hugo had to be born prematurely, which caused his death. To be fair, she is a psychiatrist and not an obstetrician, meaning not knowing about a very rare pregnancy condition is forgivable – but to so obviously not have not read my notes beforehand is unacceptable. That insensitivity could have been avoided with a quick Google search to learn more about HELLP syndrome.

Then followed a conversation about what could be done to prevent it happening again in another pregnancy – there is nothing that can prevent it – and I was told to ‘keep positive’. Again, this was meant kindly, but how on earth can I ‘keep positive’ about another pregnancy when I have not received adequate support to help me overcome the trauma of the last one?

She retorted by saying that psychiatrists are ‘overwhelmed’ by patients from all specialities, and each specialty should have their own counsellors like, for example, Macmillan do for cancer patients. I agree, but her opinion on that does precisely nothing to help me.

To conclude the appointment, the doctor confirmed that she would try to expedite the psychotherapy appointment, which I thanked her for.

We agreed I would persevere with the medication. I’ve run out of medication of that dosage, so I asked for another prescription – the psychiatrists on my other appointments have done so with no problem. The doctor said my GP had been made aware, so I could get another prescription from them. Yes I could, but as I explained, that would mean making an appointment with them, making another trip, etc etc, – and I was there then. She reluctantly got her prescription pad out of her bag but then hesitated and told me that she would get in trouble for writing the prescription because it would come out of her department’s budget.

I was flabbergasted, and asked her why exactly she felt the need to tell me about her department’s budgetary concerns, which is 100% irrelevant to a patient. In response, she raised her voice and kept  repeating about not wanting to get in trouble , and that I should go to my GP.

It was not like I was asking for something I do not need, or some revolutionary new treatment costing thousands of pounds that would have caused her strife with her manager. Telling me she was unable to give me a prescription on those grounds was spineless and lazy. To raise her voice as well was unacceptable.

At that, being frustrated at the whole appointment being a waste of time I said “For fuck’s sake”, picked up my coat and left, slamming the door as hard as I could behind me. To the best of my knowledge, no attempt was made to follow me to check I was ok.

I was not ok. I was in floods of tears and hyperventilating.

I make no apology for my language. Angry outbursts are a key symptom of PTSD – surely a senior mental health care professional would do everything they could to prevent one by being kind, compassionate and understanding – not arguing with a patient.

I am utterly furious and distraught at the way I was spoken to at the appointment today.

In addition, outside that busy hospital, people paused to gawp at the crazy sobbing woman but not one stopped to check I was ok. Shame on you, shame on you all.

The biggest shame, however, is on the consistent failure to prioritise mental health services. I know the NHS is bursting at the seams, but things have to change – the current situation is intolerable.

While the mental health system in general is in disarray, this issue is specifically with the services provided by SEPT. This post will form the basis of a formal complaint that I am also sending to them today.

Easy and quick access to counselling after baby loss is crucial

World Mental Health Day is coming up this week (Friday October 10) – as it falls within Baby Loss Awareness Week, it’s a perfect opportunity to talk about the importance of easy and quick access to counselling for parents after the death of a baby.

Counselling is vital for the parents, whose world has just fallen apart, their hopes destroyed and future lost to be able discuss their feelings without judgement, find positive ways to adjust to the ‘new normal’ and move forward with their lives.

Emotional support can often be difficult to find because there is no standard provision: much of it is provided by locally-based charities. It is common for bereaved parents to feel unable to focus on anything and to feel utterly lost, especially in the early days after their loss. This means that the parents need guidance – most appropriately perhaps from a relevant healthcare professional – to help them navigate the system.

My son Hugo died at the age of 35 days earlier this year after being born when I was just 24 weeks’ pregnant. Hugo was delivered by emergency C-section to save both our lives because I had pre-eclampsia and HELLP syndrome, and he spent his life in a neonatal intensive care unit (NICU).

So, to sum up: a critical illness; traumatic birth and waking from a general anaesthetic in intensive care; my baby fighting for his life in a NICU, and my baby losing that fight, dying in my arms.

Any one of those things would be likely to leave someone with enduring trauma. All four in quick succession? It’s no wonder I’ve been struggling these past few months.

Hugo was cared for at a hospital two hours away from our home, and we were fortunate to be able to stay on site. When we returned home empty-handed my partner and I both knew we needed counselling to help us deal with what had happened, and soon.

Hugo

We had to arrange this counselling ourselves. This was especially difficult in those raw early days: I felt like I had failed, as a woman and a mother, and I hated having to explain over the phone that my son had died. Uttering the ‘D’ word made the unimaginable real.

Added to that, I had to talk about what had caused it all – few people have heard of HELLP syndrome, meaning I had to try to explain what it was when I didn’t really understand it myself. A couple of exchanges that went something like: “Oh, that sounds serious and scary.” “Yes, I know, it’s why I need support!” added to my frustration.

Even more frustrating was discovering a grief counselling charity that had been recommended had a very long waiting list, and in any case they don’t specialise in baby loss. They suggested calling CHUMS, who said they shouldn’t see us because they are not commissioned to (in the area I live, they support bereaved children but in the neighbouring area they are able to support bereaved parents too) but one of their lovely ladies came out to see us for a chat anyway because they felt sorry for us. I am immensely grateful to CHUMS for their kindness.

My GP referred me to mental health services; I have explained previously what a farce this has been. The lack of a perinatal mental health service in my area is a significant issue. I have been diagnosed with post-traumatic stress disorder (PTSD) (common amongst HELLP syndrome survivors), depression and anxiety. The long wait for the psychotherapy I need to help me recover from the PTSD has resulted in me in the interim taking medication to help overcome the panic attacks and flashbacks. The referral to psychotherapy was made in June – and I am still waiting for an appointment.

There has undeniably been an improvement in my emotional well-being since early July, when I started the medication. The improvement can be seen in my writing, and in me being more like me more often. What bothers me, though, is not knowing whether this improvement is ‘me’, or the medication. I do not want to be on the medication forever, especially considering the side-effects (they make me feel tired and foggy-headed, basically like being constantly hungover – not fun). Antidepressants are not like antibiotics – while they make day-to-day life a bit easier to cope with, they do not cure the underlying problem.

 

Petals, the specialist baby loss counselling charity my psychiatrist suggested I contact, has been invaluable. Both my partner and myself were able to benefit from six sessions with a compassionate counsellor who gave us the gift of a safe place to explore our feelings without judgement or platitudes. We started the counselling in late July, nearly four months after Hugo’s death.

Since the events of earlier this year, I have been wanting to assert control over my life – a natural reaction to those events that I had no control over. This control has included developing a range of habits and behaviours aimed at avoiding things that are likely to upset me, be a trigger or cause a panic attack. I developed these habits and behaviours as a defence mechanism, and in the absence of constructive support. Obviously, this is not a long-term strategy but the longer someone follows a habit, the harder it is to break. My counsellor astutely observed that I have to be careful that my comfort zone does not become so small I am constricted to a zone the size of a postage stamp.

It is impossible to know whether earlier access to counselling and a quicker psychotherapy referral would have prevented me barricading myself in this comfort zone – but I think it would have helped by giving me healthier coping strategies.

A couple of months after Hugo’s death I was frustrated to learn that the NICU’s counsellor was able offer a service to bereaved parents. After talking to them, I have learned that it is standard practice to leave a ‘breathing space’ for bereaved parents before getting in touch. This ‘one size fits all’ approach fails to take in to account individual parents’ individual needs. I am pleased that the unit is taking feedback on board and making it clear to bereaved parents that counselling support is available through simplified literature that I have created for them.

I know from talking to other bereaved parents that my experience is not unique. Access to bereavement counselling can be haphazard, demanding tenacity at a time when people feel most vulnerable. I am someone who will seek help, and I worry for those who are less able for whatever reason to be proactive about finding the support they need.

Access to appropriate counselling for bereaved parents needs to be made as simple as possible. How parents can access counselling needs to be simply explained in bereavement literature that is as short and simple as possible (too often a pile of leaflets are given, which may be left unread). It would also be useful for an appropriate person to be the parents’ identified support contact, who can arrange counselling and if needed make those difficult phone calls to explain the background. I know all healthcare professionals are ridiculously busy, but such a responsibility is unlikely to take much time. It probably just requires thinking about things differently.

Such support will make the worst time of a parent’s life that tiny bit easier.

 

 

Pensive

It’s been a tough week, for a variety of reasons.

Counselling last week was very challenging, because we discussed the day that Hugo died. As expected, recounting that day was very traumatic, and it sent me straight back to those very raw, terrifying emotions. For a few days, I became nearly as withdrawn as I was in the days and weeks immediately after Hugo died.

This reaction underlines the fact that grief is not a linear process. Recovery is a slow, careful, and painful process. That there is no ‘getting better’ in the way that we think about recovering from physical ailments such as a broken leg, even though someone with a broken leg might use similar words to describe that process of recovery. That means it can be difficult for others to fully understand grief.

Wednesday marked six months since Hugo’s birth. A bittersweet day because Hugo was born far too early and because I was seriously ill, but wonderful because our precious boy made it safely into the world and with a chance to fight for his life.

Hugo has now been out of my womb for longer than he was in it.

Cheeky Hugo, kicking away and grabbing his wires.

My empty arms have been aching more than ever this week, with a visceral need to be with my baby. To hold him, to cuddle him, to soothe him, to nurse him, to kiss him. To be his mummy.

The photos of friends’ babies across my social media feeds have intensified that feeling during this difficult week. I have considered hiding their feeds for now, but I have resisted because it would feel like a regression in my progress. I avoid babies in real life, and in the virtual world I have taken to quickly skipping over those photos. I know this avoidance strategy cannot last forever. Hopefully, this too shall pass.

I’ve also been fighting a bit of a grotty coldy virusy thing, one of those bugs that lies you low but without making you properly ill. Not that I want to be properly ill, but it’s frustrating to feel less than 100% physically when there’s also a psychological illness to fight. The coldy virusy thing also means I’ve been to the gym only once this week. When combined with the inclement weather of the past few days it makes things feel a bit more difficult to deal with. A bit of a vicious circle.

Giving Hugo a kiss.

Most of all this week I’ve been pensive. Reflecting a lot.

The scene at the end of the film Saving Private Ryan came to mind this week. It’s where the elderly Private Ryan, in true Spielberg sentimental style visits the grave of Captain Miller (the soldier who led the rescue mission, played by Tom Hanks). Ryan is accompanied by members of his extended family and asks “Have I had a good life?”

He wants to know that his life has been worth the sacrifices made by Miller and the other soldiers who died during the mission.

Of course, it is incomparable circumstances, but it’s the closest way I can think to describe how I feel about what I have been doing during the past few months.

I know I am very lucky to still be here. Rationally, I know Hugo’s death is not my fault, but the sense of mummy guilt that my body’s meltdown necessitated my son’s very premature birth remains. It will probably never completely leave me.

I have had to reflect that I have made progress, however small. Despite becoming withdrawn after last week’s counselling session, I have come back. During that counselling session, I explored some of the feelings of that terrible day that I had shut away. This means I can try to deal with those feelings.

I am still writing. This helps me, and it helps others.

I am sharing my beautiful boy with the world. Hugo is helping others, with his legacy.

My year has turned out in a way I never would have imagined, and not in a good way, for the most part.

However, I hope my efforts will mean that I will be able to reflect that I have had a good life. That I have thrown everything at my second chance at life. That I will not be solely pensive for much longer, but that I will be able to get out there, into life’s full swing.

 

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Smile

As I mentioned in last week’s Word of the Week post, I’ve been making an effort to go to the gym more regularly.

Earlier this week, I had an incredible two-hour spa treatment. My generous work colleagues (thank you, thank you!) had bought me a voucher.

During the treatment, my tense shoulders were unknotted (they even cracked), my skin was brushed and exfoliated and I had a facial.

As a result of the exercise and the spa treatment my skin glowed, and I felt a bit brighter.

I added a bit more makeup than I have been during the past few months. Just a bit of tinted moisturiser, a flick of black eyeliner and some tinted lipgloss.

When I looked at my reflection in the mirror, I realised I looked the best I have in months. That may seem shallow and superficial, but it also made me feel the best I have in months. In these difficult times, you have take the positives wherever you can find them.

To mark the occasion, I took this selfie and posted it on my social media accounts.

My lovely friends and family lavished me with compliments. It felt good, I can’t deny it.

One particular very dear friend hit the nail on the head. She remarked “You look beautiful – forget the hair or makeup, it’s the smile that makes it special.”

She is so right.

Before losing Hugo, I was known (amongst other things) for my ready, bright smile and infectious laugh. For obvious reasons, I have been doing less of those things during the past few months. And that’s fine. It’s part of the process.

Seeing that smile on my face reminds me that it is possible to get through this.

I’m not ‘better’, yet. Of course, it takes far, far more than a bit of eyeliner and lipgloss to manage or overcome anxiety and depression (wouldn’t it be amazing if that were the case?).

As time progresses, the better days will hopefully become more plentiful and the bad days will become fewer.

That smile will remind me that it is ok to be kind to myself. It will remind me that being kind to myself does me good.

That smile gives me hope.

That’s why ‘smile’ is my Word of the Week.

Hiding in Plain Sight

The news and social media have been full this week with discussions about the sad death of Robin Williams. You’ll no doubt have seen all the dialogue about his troubles and his assumed suicide, some of it very distasteful with very inappropriate comments and speculation.

I have seen a couple of comments asking why there has been such a focus on the death of one man, while there are so many innocents suffering tragic deaths in conflicts around the world. In one sense, I agree. But in another sense, the sad thing about our culture is that it often takes someone in the public eye to experience a tragedy, or suffer an illness for that issue to get the spotlight put on to it and receive the awareness-raising it deserves.

Sharing our stories can help show others they are not alone. This is possibly no more important than with mental ill health, which still suffers from so much stigma and misunderstanding.

Since the actor’s tragic death earlier this week, many bloggers have been coming forward with their own stories of depression. It is useful for others to see that all sorts of people experience depression, and that it is ok to talk about it.

Others have offered advice about dealing with depression. Some of this advice, such as ‘reaching out for help’ though well-meant, reveals a failure to really understand what it is like to have depression.

Depression can feel very lonely, and it can erode your sense of self-worth. You can feel like you don’t want to drag others down with you. This means it can feel difficult to reach out.

Therefore, the best thing you can do to help anyone with depression is to reach out to them.

I have been experiencing depression and anxiety since the death of my baby son, Hugo, earlier this year. It is important to emphasise that grief does not always lead to depression, and depression does not always derive from grief – and that depression often does not have any cause at all. It just is.

My anxiety manifests itself through panic attacks, a sense of constant hypervigilance and that something bad is going to happen. The fear is about nothing specific, and for the life of me I could not articulate what bad thing I expect to happen. It defies rational thinking, which is the problem.

To put it in context though, a life-threatening illness; the emergency, very premature delivery of my son and his death within the space of five weeks – the worst really did happen – my symptoms are probably not surprising.

These symptoms are exhausting emotionally. If you add to this the fact the isolation of grief and the fact that many people don’t know what to say or how to act around the bereaved in general, let alone those who have suffered baby loss, it has become easier to stay away from many social occasions and public places.

Of course, this self-imposed isolation adds to the depression and fuels the anxiety.

I am blessed to have so many kind family members and friends who constantly reach out through texts, emails, and contact on social media. It reminds me that I am loved, and that I am important to them. It stops me feeling alone. I know they will be there for me when I am ready.

Someone recently suggested I am ‘hiding’. As described above, maybe I am, but of course it is so much more complex than that.

I have created a little comfort nest for myself, a nest where I am fully in control. And control, for me, has become a key word. Control is vital when your reserves of emotional resilience are low. Control is about survival.

This post, written by another bereaved mother, felt like it was looking in to my own brain. For me, it fully demonstrated the value of sharing your story so others know they are not the only one. It articulates the reasons for declining invitations: sometimes it’s just too hard, you don’t want pitying looks, or you don’t want to deal with awkwardness.

It’s not about rudeness – it’s about self-preservation. Doing whatever you need to do to get yourself through the days.

Me and Hugo

These are some examples of what can go through my head when I am faced with going out and talking to people:

• Will there be babies and children there, especially boys, looking all cute and adorable and ready to smash my heart again?
• Will there be parents impatiently shouting at their children, making me want to shout at the parents?
• Will people I talk to say something silly to me, or will there be awkwardness?
• Will people I talk to ask me questions I cannot answer, don’t have an answer, don’t want to answer, or am not ready to answer?
• Will I have a panic attack?

With this cacophony going on in my head, it is no surprise that I am exhausted before I go anywhere, meaning it’s often easier to just not bother.

There are a couple of very dear friends I have seen regularly, and that’s always absolutely fine. On most of the few other occasions I have gone out, despite my reticence it has been absolutely fine.

Sadly, some people on some other occasions have said some silly things to me. It has been without malice, but it has created awkwardness. I’ve prepared things to say, but when it happens on a bad day I just don’t have the emotional resilience to deal with it. That’s not to mention how cross I feel when thinking that I may have to consider the sensitivities of others who feel uncomfortable talking about baby loss.

There are good days and bad days with my depression and anxiety. There are also better mornings and worse afternoons in the same day, and vice versa. That also doesn’t help. On a good day, I’ve made plans with a friend, only to get to a bad day to realise I’m not ready and can’t face it. I’m grateful to have understanding and patient friends. I know everyone is not so fortunate.

So, it’s become, on the whole, easier to ‘hide’ at home, talking to people on social media and wring my blog. But that, of course, is not hiding at all.

If anything, I am hiding in plain sight.

I am recording my journey very publicly, and hopefully sharing my thoughts this way helps my friends and family understand what is going on in my head. It is also helping me make new friends. Complete strangers have also got in touch to say that my candour is helping them.

Sharing stories really can help others with similar troubles and experiences. It needn’t have to be about celebrities – ‘normal’ people’s stories are just as relevant, and important.

Please don’t forget that there are many people with depression and anxiety hiding in plain sight. Many people try to hide it because of the stigma. If you know someone experiencing these illnesses (and remember they are illnesses), do reach out to them. A text, an email or a ‘hello’ on social media to let them know you care and are thinking about them (but with no judgement, no telling them to ‘cheer up’ or similar) really will mean the world to them.