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What I did during National Depression Awareness Week

Now I no longer have a wonderful communications team to keep me briefed, awareness weeks like this one can pass me by. It was serendipity that I saw my GP yesterday and we agreed that I would start the final reduction of my antidepressants prior to stopping them altogether.

There are side effects to reducing modern antidepressants, also known as SSRIs, as well as significant risks. Reduction should be done carefully, with expert supervision. My GP has specialist mental health training and experience, which is also serendipity, as I didn’t know this when I shuffled into her consulting room at an acute stage of my last depression. She listens carefully to her patients, and works closely with us and secondary care staff including my psychiatrist. I am confident that I don’t get special treatment; she is equally compassionate and skilled with everyone. I do know that I am lucky.

It is shocking how many people think that you can go on the internet and become an expert in the treatment of mental illness. Without me asking for their advice, someone suggested that now we know that mindfulness works just as well as antidepressants, maybe I should try that instead? This made me smile to myself. I have given a presentation about the importance of access to mindfulness as a treatment option for anxiety and depression with the report author Professor Willem Kuyken to the Permanent Secretary of the Department of Health, Una O’Brien, and her senior team. So I do know a bit about it. But even so, with my own treatment, I need help.

As my dear friend @BiPolarBlogger said on Twitter, telling someone they should have a go at mindfulness is a bit like telling a person who can’t swim that doing the butterfly stroke is good for you. Such psychological techniques need to be taught with skill and practised regularly. And they are not for everyone. Mindfulness can be increase problems for someone with a trauma-related illness such as PTSD.

Actually, once I got over the hiding-under-the-bed-stage of my last depression, I found mindfulness to be a great help, and I use it most days. Yesterday I looked into a top-up course because, like all exercises of the body or the mind, repetition and building mastery are essential. Which isn’t the same as taking a tablet.

I have to confess to feeling anxious about coming off my little pills. There is something about putting them out before I go to bed, and then taking them on waking in the morning, that helps me remember my own fragility. It is a little daily act of self care. I might forget to floss my teeth, but I have never forgotten to take my medication.

People like me who experience depression have a tendency to be extremely hard on ourselves. I’ve written about this here and here. Medication prescribed by a doctor that you cannot buy over the counter is a reminder that someone who knows what they are doing believes that you need and deserve help – even if you don’t believe it yourself.

As well as upping my game on mindfulness, I am also doing more work (paid and voluntary) and preparing for a gruelling bike ride. And I’ve bought a new book called Reasons to Stay Alive by the wonderful @MattHaig.

Reasons to Stay Alive

Reasons to Stay Alive

And finally, I am using CBT techniques – facing the thing that frightens me and through this, allowing the fear to subside naturally – to help me. My blog is part of this.

Thank you for reading it. I hope it helps you or someone else xxx

 

Remembering some little ones

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I recently spent the weekend with 4 people who are extremely special to me. Activities included extensive dancing and singing, raucous laughter and some tears. We went to bed at 2 am. And we talked about what we’ve learned since we first met each other, 41 1/2 years ago, aged just 18, and began caring for very sick children. 3 are still nurses. The 4th works in the helping professions. I do what I do. This is written for Alison, Jane, Nicki and Teresa. They know why.

Nurses care for thousands of people during their careers. Nursing children is particularly psychologically challenging. The advice we were given when we started out in 1973 was not to become too emotionally involved. But that was impossible. There would often be a child or a family who you could not get from your mind, because they touched something deep inside you.

This is just one of mine.

I was 19, and on duty on my allocated ward. A call came through from another ward that a nurse was needed to go on relief because a baby required one-to-one nursing and they were short of staff. I was selected.

When I arrived, I was ushered into a cubicle. The baby, I will call him Baby A, was 10 days old. He was a normal size and weight but had been born with a grossly abnormal heart. He lay in a small cot, on a ventilator, which I understood how to manage, and peritoneal dialysis, which I had not experienced before. The staff nurse looking after him explained what I needed to do, which involved pouring titrated quantities of warmed sterile fluid via sterile jugs and funnels through tubes into his abdomen, and then letting it out again, via a complex series of clamps, and measuring it using different jugs. It was essential to keep the fluid in balance because his kidneys weren’t working; his abdominal cavity was acting as a kidney to flush out the toxins but had very limited capacity. The fluid balance had to be measured and recorded every 15 minutes. Because of the ventilator as well, there were a large number of measurements to make, and some complicated charts to complete. Although I said that I understood, I could see she was worried that I hadn’t fully grasped everything she told me. But she had to leave me to supervise the ward where there were 23 other very sick children.

It was a tense afternoon in that cubicle. I was boiling hot in my full uniform with starched collar and apron, plus white overalls, plastic apron, mask and gloves. Baby A lay very quietly; it was hard to believe such a perfect looking child could be so ill. Gradually I got on top of the dialysis and the ventilator, and I even gave him a little wash, although he wasn’t using his nappy.

At about 6 pm the ward sister and some doctors came in. They had been looking at Baby A’s results and concluded that the problems with his heart were so severe that there was nothing they could do to help him, and that because so many of his organs had failed, it was causing him severe distress to keep him alive artificially. They left and the sister stayed behind. I asked what this meant. She said we would take him off his ventilator and dialysis, which we did. I took off my gown, mask, plastic apron and gloves. She closed the cubicle curtains and left me to sit with him.

Baby A’s mother was too ill to be there. She might also have had other children, I don’t know. Anyway, I thought about what she would do if she had been able to be with him on his last afternoon. I thought she would hold him. So I took him out of the cot, and sat in the rocking chair with him in my arms, wrapped in a shawl, and sang to him and kissed him.

It took over an hour for him to die. When I was sure he had, which I could tell because he started to get cold really quickly, I rang the bell. The sister and a doctor came, and then another doctor, and they carried out an examination of Baby A, and his death was certified.  The doctors left.

The sister then asked if I had ever laid a baby out i.e. prepared the body for the mortuary. I said I hadn’t, but I knew what to do. She said she would help me, and together we washed him again, and did all the other things that were needed. She said that it would be best if I carried him down to the mortuary, which was in the basement of the hospital, so I wrapped him again in the shawl but this time covered his head, and held him close against my shoulder so that no-one could see him on the way. I felt a great desire to continue holding him. It felt wrong to leave him down there.

On the way back up the stairs, the sister, who seemed quite old to me but was probably under 30, said that I should now go for my supper break and afterwards return to my own ward. I remember going to the canteen. There were people that I knew, but I sat on my own. Someone came over and asked me what I’d been doing and I said I’d been on relief. I couldn’t think of how to talk about Baby A without sounding melodramatic. So I didn’t say anything, not then or for many years afterwards. I can still feel his little body in my arms.

When people have asked me about how hard it was to have been a chief executive, I remember that day, and many others from my clinical career, and of the millions of stories of courage, kindness, selflessness and hard-work that nurses and doctors and all our other clinical staff could tell, if only we asked them, and they could find the words to tell us and the time to do so.

Postscript:

The day after writing this, two things happened. The first was that I heard from one of the nurse friends I mentioned at the start of my blog. She was born to be a nurse. Her goodness shines. She’d read my blog, and told me of a baby she had looked after who was dying of heart failure. The ward sister said that no child should die alone. So the nurses took it in turns to hold him. Eventually he died, 3 days later, in my friend’s arms. I can think of no kinder place.

And then I heard the desperately sad news about Adam Bojelian, @Adsthepoet as he was known to us on Twitter. Despite having profound physical disabilities and never having been able to do more than write by blinking, Adam produced beautiful poetry. In his short life, he touched the hearts of thousands directly and via social media with his positive outlook, jokes, wide interests and openly expressed desire to go home from hospital. He died in March aged only 15. He is a young man we will never forget.

May Adam’s dear soul, and those of all little ones taken too soon, rest in peace. And may their parents find comfort from knowing they were much loved.

It’s #NHSChangeDay. And it’s #TimeToChange

My blog today may be the most important thing I write this year. So forgive me if I seem to be plugging it rather a lot!.

We all have mental health. And we all experience mental distress from time to time. But only some of us (1:4) get mental illness. This 3 1/2 minute video explains it well.

One of the hardest things about mental illness is the stigma associated with it. From society but also family, friends and work colleagues. But most of all from ourselves. It stops us seeking help. For example, people wait a year on average before talking to someone else about their depression. This delay causes great suffering and harm.

Time to Talk Day  took place last Thursday, part of the national Time to Change campaign. The purpose of setting aside a day every year is to open up conversations of just 5 minutes between people, and to help each other. I had some amazing conversations via Twitter and face to face with people, including at a reception for the national mental health heroes held by Nick Clegg, Deputy Prime Minister.

You may feel that politicians are jumping on the mental health bandwagon in the run-up to the General Election. But I think that’s OK. Because after the election, we can join together and hold whoever is elected very firmly to account to make sure that mental health services stop being the Cinderella of the NHS that they still are. It’s not enough for politicians to say nice things. We need carefully thought-through policies that make a positive difference, and significant investment in real terms over the life of the next parliament.

Stigma has many other negative impacts as well as on policies and funding. Time to Change have found that, while the public are gradually improving their attitudes towards people who experience mental illness, there has been no discernible improvement of attitudes within the NHS. In fact some people who use mental health services say things have got worse.

This produces all sorts of horrible results:

  • People with mental illness can be treated without the compassion and respect that are essential for effective health care
  • People with mental illness may not receive the treatment that they need in a timely manner. They may have to fight to get the right care. And they may not even receive the right treatment at all
  • The links between mental and physical illness can be forgotten or ignored, causing detriment to people with either or both. For example, people with serious mental illnesses die on average 20 years earlier than the general population, often linked to preventable diseases such as heart and/or lung diseases, some types of cancer and strokes. People are people, not single diseases
  • People with mental illness report that NHS staff can have a pessimistic outlook on their life chances, including relationships, education, employment and social contribution
  • Staff who work in mental health services can be blamed for things that are not their fault, or criticised for not providing a service when it hasn’t been commissioned or adequately funded
  • NHS staff who themselves experience mental illness often feel the need to hide it from their colleagues, and when applying for jobs. Mental illness is not seen as something to be proud of overcoming in the way that some physical diseases are portrayed

Part of our #NHSChangeDay #TimeToChange campaign asks NHS staff who have experience of mental illness to consider talking about it with their colleagues. Please be assured, we are not in any way pushing people to do this. We ask anyone who is considering doing so to think about it carefully, and look after themselves, including getting support. There are some good resources here. I know from my own experience how hard making such a disclosure can be, and how significant are the ramifications. But that takes us back to stigma. It really shouldn’t be so hard. And if we cannot be compassionate towards our colleagues who may be experiencing mental illness, how can we, and they, be expected to be compassionate with patients?

When we find ourselves troubled about something that we hold dear, it is human to want to disagree. Or run away. I felt very upset when I first heard the findings of the Time to Change research, and wanted to say no, surely it must be better than this. But then I listened again, and realised that, unless we face up to what has been uncovered about attitudes within the NHS, things will never improve.

If you have 6 minutes to spare, you can watch me talking about it here. Including the long-lasting effect that one nurse’s probably unintentional lack of compassion had on me, also a nurse.

The #NHSChangeDay #TimeToChange campaign aims to tackle this stigma within the NHS head on, with compassion, but also with wisdom and hard work. From it, we are building a programme within Time to Change that we hope will leave a very important legacy for NHS staff and patients.

Whether you are a patient or an NHS clinician, a catering assistant or a Chief Executive, please join us. Everyone can commit to one of our actions or create an action of their own. It’s NHS Change Day on 11th March 2015. And it’s Time to Change.

Thank you.