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Joanna Lane on her moving health campaign

Joanna Lane in her book Mother of A Suicide: The Battle for the Truth Behind a Mental Health Cover Up, tells the story of her 31-year-old son’s death, her grief and her search for the reason behind his suicide. When she finds that a rarely diagnosed but far from rare condition probably lay behind his despair she tries to raise the alarm to save others. However, her unsuspecting attempts are met with obstruction after obstruction. Gradually she confronts the truth that the organisations set up to protect the public are not doing their job, and we are all at risk.

Accent welcomes Joanna to Accent Hub as she tells us how much difference it’s possible for an individual to make when they’re passionate about a cause.

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Only nine weeks until my book comes out. I can’t settle to anything. I wander round the house looking out at the sunlit garden, trying to take stock of the past eight turbulent years, trying to see what, if anything, has changed.

The anniversary of our son’s suicide was last week, and this time of year is always hard. It must have been around now, when I first discovered that the reason for his death could have been an undiagnosed complication of a head injury he suffered when he was small, causing the impotence that he kept secret, and the depression that he hid too well.

This week would have been when I made my decision. Nobody else was warning people – even though the number of undiagnosed people in the UK has since been estimated at a million – so I would. It was the only way I could make anything good come out of his death.

So I simply started to write lots and lots of emails to everyone I could think of and reaching people in any way I could, through articles, talks, radio slots, forum postings and social media. This is what I spent the next eight years doing. I had no idea how much difference I was making, all I knew was that I had to keep going, that the guilt, grief and pain made it impossible for me to stop.

Reflecting back on the past couple of years, I do know that there has been a difference. The annual number of people diagnosed with hypopituitarism has risen. In 2008 only 6,916 people in total were diagnosed as in-patients, whereas, in 2015 there were 13,677 cases, nearly double. (The outpatient figures are even more encouraging – from 155 to 748 – though apparently this data is less reliable)   Another important change is that the British Neurosurgeons Trauma Group has drafted guidelines for screening for post-traumatic hypopituitarism, which I believe are now being put into effect.

Is any of this because of me? I would like to think so, but I don’t know for sure. Neurosurgeons have told me I was contributory in prompting the screening guidelines. Equally, PTHP research has been snowballing every year, and this could explain why more people are being diagnosed. Whatever the truth, this progress is decidedly better than that proverbial kick in the teeth.

If I can claim I had any part in this, it makes me think about how we all have the power to make a difference. There are so many people, often women, who self-limit. They actually prevent themselves from achieving anything by telling themselves that they shouldn’t put themselves forward, that they’ll fail anyway, that they don’t deserve to succeed. I have fallen all my life into this category.

But our son’s death brutally by-passed all that, because if I didn’t ‘put myself forward’ I was making myself complicit in the illness and perhaps death of all those like Chris. I had to do what I could, however inadequate.

So I just got on with it, not at all efficiently, but on the other hand, never giving up. I didn’t let being hopeless and shy on the phone, or naïve about how organisations worked, stand in my way. I was sustained by a gradual realisation that others were on my side, that they forgave me my blunders.

It was probably after two or three years that I began to feel that the big boulder was shifting, and that when I spoke to people some of them already knew what I was telling them. This encouraged me. I also had the advantage that what I did was incremental. You couldn’t lose. Each new person you told was a new person told, who might tell others, so you could never say you’d failed, except in the sense that you hadn’t told enough people quickly enough (but that would be no reason for stopping).  It was like being stuck in traffic when the satnav puts your arrival time further and further ahead, but the number of miles still keeps going down, however slowly.

And now, my book. Will it achieve lift-off? Will it soar above the traffic jams and reach all the people who need to know? Fingers crossed . . .But at least I have learnt now, not to self-limit.

You can pre-order Joanna’s book here!

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