Proud to be a member of the #PNDFamily

I am a proud member of the #PNDFamily. I’d like to tell you how the family has helped me, and what it means to me.

The PND Family is the brainchild of wonderful blogger Rosey who created #PNDHour, which takes place on Twitter every Wednesday evening between 8pm and 9pm to:

  • Provide a safe space to discuss topics surrounding pre and postnatal illness.
  • Help connect those affected by the illness, and provide support for each other.
  • Increase awareness and encourage open conversations about the illness.
  • Discuss where improvements could be made in all areas of the support provided for those affected.

PND is an abbreviation for post-natal depression. Anyone who has been affected by any kind of antenatal, perinatal or postnatal mental health is welcome to join. There are members of the PND Family who have experienced issues such as postnatal depression and puerperal psychosis, and have been cared for in hospital. There are also women who, like me, have anxiety issues as the result of a traumatic birth.

The traumatic birth of my son Hugo was no one’s fault. I was seriously ill with preeclampsia and HELLP syndrome, and I am fully aware that if not for the actions of obstetricians, midwives, anaesthetists, haematologists, sonographers, pathology lab staff and goodness knows who else across two hospitals, I would not be writing this post. With the exception of a couple of staff in intensive care, everyone who cared for me was kind and compassionate; some sat and held my hand and said reassuring words while I sobbed, and others gave me big hugs.

None of these actions, however, can remove the sense of utter helplessness I felt, the sense of terror I experienced once the full gravity of my illness dawned on me (I was too away with the fairies on medication at the time to really understand), the flashbacks and the nightmares, and the resulting anxiety issues. Connected to this is the intense grief related to Hugo’s death, aged 35 days.

Getting appropriate support has been challenging – you can read all about it in this post and this post.

Me and Hugo

Me and Hugo

I was so pleased to discover the PND Family. We all have different backgrounds, live in different areas of the country, have had different birth experiences and different issues pre-and post-birth. For all our differences, we share many crucial things in common: a passion and determination to support each other, to provide a crutch when one is having a bad day, to use our experiences to help improve services for other women, and to show that no matter how bad things might feel today, with the right support recovery is possible. I cannot tell you how invaluable this support is.

Many very open and frank discussions take place in the very public forum of Twitter. Many might recoil from that, thinking talking about such personal things on the internet is a bit strange. Yes, taking part might not be for everyone, but the PND Family feels like a safe place to talk with other women (and some men!) who get it. They don’t offer platitudes, judgement, or tell you to pull yourself together and get over it. They listen, and send virtual hugs. They can also say “Me too!”, which means we don’t feel alone.

Just as importantly as the above, talking so openly about mental health issues helps break the stigma. Sadly, too many people still suffer in silence because they are worried about the taboo that still surrounds mental ill health. I hope the openness of the PND Family shows people with all kinds of mental ill health that it is ok to talk about it, to seek help, and that non-judgemental support is available out there.

Professionals from all kinds of disciplines are also part of the PND Family. Their input is indispensable, because their contributions can help validate our experiences, provide explanations for things, as well as so much support and advice.

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Naturally, I wrote in purple and added Hugo stars!

One request I would like to make of professionals is that while interjections are always welcome – it’s Twitter, after all (and I’m always butting in on others’ conversations) – please consider the nature of the discussion before contributing. There have been a few occasions where interjections resulted in the conversation being diverted from mutual support to a discussion about the whys and wherefores of policies and guidelines.

We’re all intelligent women and we understand the professionals’ underlying message, whether it’s about positive birth, or quotes from guidelines. The problem is, they are often irrelevant to our conversation, because the quoted policy or guideline wouldn’t have altered our experiences, and it doesn’t provide any help or support for those of us with unresolved birth trauma issues. Yes, Twitter moves quickly and it can be difficult sometimes to say everything you mean within the constraints of a tweet, yadda yadda and all other relevant caveats but some interjections, however well-meant, can have unintended consequences such as appearing insensitive, or diverting the focus away from the mutual support we are offering one another to a frustrating debate about policies. Please think about whether your contribution is congruent. Sometimes all we want to hear is words to the effect of “Your experience sounds terrible, hugs.” We love virtual hugs!

*Steps off soapbox*.

That said, my experience is overwhelmingly positive. I shall be eternally grateful to Rosey for creating this incredible support network. Considering the reach it has had and everything it has achieved – Rosey spoke on BBC World Service a couple of weeks ago – it is difficult to believe it has been running for just shy of a year.

I’ve met only two of the family in person, but I feel I know them all personally. I was going to start naming everyone, but then worried I would forget people, so I shall say you know who you all are, thank you from the bottom of my heart for your kindness, love and support and for always remembering Hugo.

You are all stars.

*You can find the PND Family on Twitter using the hashtags #PNDFamily #PNDChat and PNDHour

*Most of the family talk candidly about their experiences on their blogs – Rosey has compiled a list.

 

Reading between the lines of the news in a digital age

The media has always been used as a mouthpiece for propaganda, and we too often are given only selected parts of a story. In the digital age, with the wide availability of so many forms of media, we are privileged to be able to easily access the wider issues – and the other side of the story.

When I was growing up, we had four TV channels. The news was on at set times, and your family would read a particular newspaper. You could get extra news from the radio, and Ceefax or Teletext, if your TV had the capability.

Of course, people read between the lines of the newspapers, and questioned what they heard on the news, but getting more information was challenging.

The digital age has transformed how we digest news and current events: it puts us in control of what we read, watch and listen to, and when.

Alternative perspectives on a story are available literally at people’s fingertips on smartphones, tablets and computers. We are able to compare views from the online versions of newspapers, chat with people from all over the world on social media, and discover new opinions on blogs. If we so choose, we can sit in front of 24 hour news to watch a story unfold and develop.

A pertinent recent example of using digital media to gain a perspective on all sides of a story is yesterday’s announcement of new NICE guidelines for birth. Many headlines suggested that home is the safest place for women to give birth, with the implication that there was only one ‘right’ place and way to give birth. Such a view is very unhelpful for many women. Of course, there is far more to the guidelines, and it was fascinating yesterday to watch debates unfold.

On Twitter, women shared their own very different experiences of birth – some in hospital, some at home, some in midwife-led units. Some went to plan, others needed interventions. Most births had happy outcomes, but others ended tragically with the death of a baby. Tweeters shared the angle pursued by the news and daytime programmes, saving me the trouble of putting the telly on. Bloggers articulated their views eloquently in their posts, discussing the guidelines in the context of their own birth experiences.

It is wonderful to be a part of such open and honest dialogue, not just about this topic, but so many important issues too.

However, we must always be mindful of respect and boundaries when sharing news on digital media: 24 hour news is notorious for being too quick to report before all facts are confirmed; libellous allegations are posted on social media and spread like wildfire; graphic images of accident victims are shared; terrorists exploit social media to share their despicable videos of hostages’ murders.

Respect and boundaries on social media was discussed on Twitter earlier this afternoon in relation to the tragic deaths of Charlotte Bevan and her baby daughter Zaani. I send my deepest condolences to Charlotte’s family.

The group of us who had been tweeting realised we needed to take a step back and balance our sadness over their deaths and our desire to work together to do something to help and support others, with respect for Charlotte’s grieving family. It can be too easy to slip from expressing about a tragic situation on social media to speculating what might have happened, which is unhelpful and disrespectful to the devastated, grieving family.

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For all the potential we have to be an active participant with digital media, there will always be those who digest information passively. Those who take sensationalist headlines (typically from the good old Daily Mail) at face value. Those who share on Facebook the emotive posts by Britain First without pausing to think of the politics and tactics that are behind them.

You cannot always believe everything you read, and it is the sensationalist headlines that do the most damage to society: generating fear of crime, creating health worries with no foundation of evidence; inciting xenophobia and racism with unsubstantiated tales of immigrants stealing jobs and taking benefits. I find this apathy, and lack of reflection and contemplation about the facts behind the headlines exasperating, saddening, and at worst – scary.

On the lighter side, though, some tabloids’ finger in the air headlines can be amusing – guess what, everyone, winter is forecast to be cold! Maybe.

We should always take the time to question what we hear and what we read, taking advantage of all the tools we now have at our disposal to read between the lines of the news in this digital age.

 

Linking up with Mum Turned Mom, based on the prompt “I read the news today.”

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Post Comment Love

This week has been brought to you by a feeling of sadness

Sad.

It’s hardly a new feeling for me: I have felt sadness every single day of every single week since Hugo died.

‘Sad’ has been in contention as the word to sum up my week for some months now. While I have always been open and honest about my feelings in my posts I have always hesitated to title a post ‘sad’. I have often replaced it with a more positive word.

So, why a ‘sad’ post now? I am no more sad than I was than when I began blogging about Hugo; nor am I less sad.

The difference is I am now feel more able to say I am feeling sad. I know that might seem strange to read: of course I am sad about my baby’s death, and why should I not say I am sad?

The answer is complex. Hugo was born so prematurely, which led to his death, because I was so sick. I nearly died: my sadness is interlinked with my guilt about failing to protect my son (however irrational that may be). I also feel guilty about being sad, thinking that giving myself over to sadness means ‘wasting’ days because when I give myself over to that feeling I am no use to man or beast. Nearly dying, as well as my son’s death means that I feel I cannot waste a day feeling sorry for myself. Paradoxically, I can also feel guilty about being happy.

What a mess.

A long-awaited appointment with a psychologist is helping me review this sentiment. I was apprehensive before the first appointment because of having to explain my story to the gazillionth professional (believe me, there is only a small amount of exaggeration here), but she cleverly teased the story out of me without me feeling like I was recounting it all over again (though it is not to say the process was easy).

I have some goals that she is going to help me achieve, which include working towards feeling comfortable with whatever I am feeling. Feeling comfortable about feeling sad without feeling guilty. Feeling comfortable about feeling happy without feeling guilty. And feeling comfortable about everything in between.

The sessions and the work involved will be challenging as it means returning to moments from February and March that remain terrifying and heartbreaking. My brain has been hiding the worst of the trauma to protect me, but little snippets – flashbacks – pop out every now and then. I quickly put these flashbacks back in my brain because they are so upsetting and scary.

The psychologist, and the psychiatrist I saw this week (as a welcome relief from my last psychiatrist appointment, this one was kind, compassionate, made eye contact, was reassuring, listened to me and answered my questions) have gone to great lengths to explain to me that everything I am feeling is understandable and natural in the circumstances.

I know that rationally, but the first psychiatrist telling me I am ‘unwell’ and saying that my initial refusal to take medication, and not feeling suicidal was not sufficient grounds to section me has been ringing in my ears. In retrospect, I think he meant that last comment in a light-hearted way, but I was not in the mood for jokes. I felt like I was broken, that something was wrong with me, and in response felt I had to be strong.

Now, I am being encouraged to see that saying I am sad is not bad, nor is it a weakness. It is a natural part of grief, of course, and I need to not feel guilty about experiencing it.

Feeling comfortable about these feelings will not be achieved by tomorrow, next week or next months. It is all about small steps.

This post is the first.

 

The Reading Residence

A response from SEPT: When sorry seems to be the hardest word

Today I received a response from SEPT, the organisation that provides local health services in relation to the complaint I made about my psychiatrist appointment last month.

A response that is very business-like, devoid of compassion and empathy.

A response where ‘sorry’ seems to be the hardest word.

The response opens with “I am pleased to confirm that we have completed our investigation in to your concerns and I can now reply in full.” It explains who has investigated the complaint.

Am I unreasonable to expect somewhere in the opening paragraph words to the effect of “I am sorry you have had cause to complain”? Or any words expressing contrition?

Patients are human beings with emotions and feelings. We are not just another complaint to strike off the list, to add to the Board report.

The letter does acknowledge that there are many aspects of the appointment that should have been conducted better. It says the doctor has been reminded of the importance of introducing herself properly, and taking the time to help settle the patient, which is heartening. They apologise for the ‘negative experience’ as a result of the lack of continuity of care because of seeing three different psychiatrists. The Deputy Medical Director has apparently written to all doctors reminding them of the importance of reading a patient’s notes before seeing them to help ensure that continuity of care. One would think reading notes before seeing a patient for the first time would be a professional standard.

There are also acknowledgements that being told to ‘remain positive’ was perceived as ‘glib and superficial’. The doctor has also apparently asked the letter’s author to ‘convey her apology’ for telling me ‘God will give me another child’ – they agree it was an inappropriate remark to make.

Being as there is nothing that can change what occurred during that appointment, I have little choice but to accept what they say about ‘apologies’ and staff being reminded about how to speak to patients.

However, there are greater concerns:

In respect to the wait for psychology, the doctor was apparently reading from the psychologist’s letter in my clinical record. The psychologist’s recommendation, according to the response is “that you initially had bereavement support rather than longer term psychological therapy from mental health services in the first instance.” This reference in the response letter is the first I have heard of the psychologist’s letter, or the recommendation. Another issue resulting from the lack of continuity of care, no doubt.

Evidently, the doctor should have explained about the number of talking therapies and IAPT services that are available to me. Well, perhaps she should. The trouble is, it is immaterial because as the author of the letter should be aware once you are in secondary mental health services, IAPT services refuse to accept you – as I discovered to my frustration back in June. Perhaps I should not be in secondary mental health services: this seems to be implied by a separate letter I received today, a record of the appointment in question. This letter includes a changed diagnosis that is news to me; says I “feel disconnected from my dead baby Hugo” – yes, it really does say ‘dead baby’ and incorrectly states the month Hugo died. It also appears to have a different recollection of the appointment on many points.

Anyway, back to the complaint response. If I do not belong in secondary mental health, they should discharge me. There is a long waiting list for IAPT, and it would mean starting all over again because of the mess the pathways are in which is of course, less than ideal. Thankfully, I am now seeing a clinical psychologist, which will be explained in more detail below.

The icing on the cake of the response letter is in reference to the doctor’s refusal to give me a prescription. The response outlines the protocol for prescribing, but that exceptions are sometimes made, as happened in my previous appointments.

My favourite part is “I wish to assure you that Dr x would not have ‘got into trouble’ for writing a prescription…” Phew! It is such a relief to know the doctor would not have got in to trouble for not doing something for me. Frankly, I could not give two hoots about whether or not the doctor would have got into trouble. What I do care about is the distress I was in, as was clear in my original complaint.

There is no reference to whether the doctor raising her voice is considered acceptable, and whether it is practice to follow a patient who has fled in frustration to check they are ok. Such a disappointingly business-like and inhuman way to respond to a patient who had so clearly articulated her distress.

Thankfully, as outlined above, I have now started psychotherapy sessions, which I am incredibly grateful for. I have spoken to one on the phone, and met a consultant clinical psychologist and clinical psychologist in person. Each one was kind, compassionate, empathetic and listened. The relief at such positive progress is huge for me. I remain disappointed that it took the last blog to expedite it, and I continue to worry for other patients who feel unable to fight back.

SEPT, your psychology service is a credit to you. I understand there are circumstances beyond your control, with psychiatrist vacancies and general NHS resources. However, to speak to a patient in the way that doctor spoke to me is wholly unacceptable. While there are two references in the letter to ‘apology’, it is incredibly disheartening that you have failed to acknowledge that in your letter, to be human.

To say sorry.

(Note: I shall be emailing this to SEPT. I redacted the doctor’s name, but will be including it in my response to SEPT).

 

 

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.