I found out the fullish details of the unexpected death of another dude we knew about in Oxfordshire this afternoon. Kind of lucky (is that the right word?) I had the day off. His mum (I’ll call her Maria for now) was worried about how upsetting it would be for me to read this. Yeah. It was. As upsetting I’m sure as it was for her to write it.

It was also shocking. And harrowing. Damning of health and social care for dudes. And so illustrative of how completely inconsequential our dudes lives are to those who are paid to provide care and support for them. Not necessarily to those who actually work directly with them, but certainly pretty much everyone above that tier. How can this be?

I just wanted to flag up a few things that leapt out at me now about those early days.

When an unexpected death happens within the NHS, families have no idea of “the process” about to unfold. And not knowing means that the NHS holds all the power and, probably reasonably regularly, the ability to keep things unexplored, unexplained and out of the public domain. I know in the post-Francis world of candour and transparency this should no longer be the case. But as the old world shows no real signs of waking up and joining in, I’d advise families to think the worst. Sadly.

I was contacted pretty much straightaway (on twitter I think) by a wonderful barrister who had been reading my blog. She advised contacting INQUEST immediately. I think I spoke to her the day or so after LB died but I can’t quite remember. It was such an unimaginable time. I emailed INQUEST on the Monday morning so suspect I must have done.

LB died on the Thursday not the Monday. This email alone illuminates how fucked up the system is. Can you imagine emailing an organisation less than four days after your child’s death in hospital to ask for advice? Advice? How can this be?

At the same time, it underlines how important it is to be informed. Within four hours of sending this email an INQUEST caseworker was in touch and phoned to explain exactly what would happen, what we needed to do and what to expect. It was a terrible shock. The cuddly NHS suddenly seemed a whole lot less cuddly.  We were recommended a solicitor within days and I was making calls to the Coroner’s Office to demand that LB’s autopsy was done properly. Can you imagine?

Maria and her partner weren’t given early warning of what they should do and what lay ahead of them. So they dealt with different horrors. Just as damaging. What was similar were the throwaway emails from Ridgeway/Sloven Health. ‘If there’s anything we can do’… type comments. These statements are so awful they should be banned from any interaction to do with unexpected deaths in the NHS (or any setting really). How are you supposed to respond? Where on earth do you start given where you are? What can you do? What are you offering? What do you mean?

Maria’s husband received a mobile phone message from the manager of her son’s ‘care’ home stating they should let him know if he could ‘help with the funeral arrangements’. Eh? You’ve just found out your child is dead and some suit is lobbing meaningless ‘small talk’ at you. Vague comments around ‘help with funeral arrangements’ is nonsensical to a bereaved parent. What help? Making sandwiches? Finding a venue? Stumping up the cost? Choosing a coffin? Deciding on burial or cremation?? It’s at best a careless offer and at worst a dirty trick. To tick a box and scarper as far from the fake offer as quickly as possible. Not sure there needs to be much of a sprint at this point as I can’t imagine many parents/family members will pipe up with any suggested ways of helping.

I don’t know but suspect this whole vile crap, uncomfortable offer comes from empty policies coloured by the discomforting thought of unexpected death within an organisation designed to sustain health. I’d suggest get over the discomfort and work out the type of support families in such situations would want (practical support like food, cleaning, clothes washing, money to cover being out of work, funeral costs, paying bills, contact with schools/university/employers, emotional support like counselling, etc, etc) or withdraw the empty offer. Even with good intentions it all becomes nonsensical given the seemingly unavoidably enormous costs involved in preventing the NHS steamrollering over what’s happened.

“Er, yes, thanks, can you provide the egg sarnies at the funeral? Cheers…” [Up to £25-30,000 of legal costs? Wha??? … ]

In the meantime, the anniversary of LB’s death is getting closer. Something I’ve been able to avoid dwelling on largely because of the remarkable distraction of #107days. If any influential NHS or related peeps want to openly chuck their Post-Francis commitment and belief into the transparent, democratic and collective joyfulness captured in these days of actions, I’m sure we can fit you into existing days. In the spirit of making the incomprehensible/baffling simpler. And hopefully to show early steps to different ways of doing and being.

An antidote to the obscene. And inhumane.