We need a better word. Awareness sounds so woolly, so vague. Awareness only goes so far. Without action it is just a slightly increased passing curiosity in a situation unfamiliar to most people that will fade until the next year when there may be a slightly higher chance of reading all the terrible accounts of loss, heartbreak and tragedy.

For bereaved parents, we shouldn’t need an awareness week. It is something we are keenly aware of at all times. It’s not about pity. It’s about being able to talk freely of our lost children. It’s about not accepting that “these things happen” or “it was not meant to be” or “you can always try for another” or “we don’t talk of such things”. It provides the simple permission to be able to say their name and not have them erased from family histories.

It’s about understanding that this loss reverberates through lives and doesn’t just go away after an arbitrary period or follow a prescribed set of stages. It’s about understanding that unhelpful attitudes are part of what compounds an already harrowing grief and prevents meaningful actions to prevent these deaths and support those where that couldn’t happen.

It’s not just about getting angry at the indifference and cruelty of health care professionals in handling bereaved parents, it’s about questioning why there is such inconsistency in treatment across the country where at one end of the scale we have the horrors of Morecombe Bay and at the other the incredible work in hospitals like St Mary’s in Manchester.  It’s about questioning why good practice and guidelines on care and aftercare are ignored or inconsistently applied.

It’s not just about money, it’s about attitudes and challenging the corrosive myths that minimise loss. It’s about recognising that this goes further than just healthcare, it extends to every aspect of our lives. It’s about the silent isolation from family, from friends and the workplace that batters an already damaged mental health and ensuring there is access to support to help people through be it one day or 1000 days after loss.

It’s about the parents facing hostile workplaces where indifferent or callous treatment (“I don’t see why you have to take full maternity leave, I mean, it’s not as though you have a baby to look after”) forces them away from their careers and leaves them too exhausted to take action.

We need awareness to become action.

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