Navigating – an advocacy story

Trying to do a good job when you’re not completely sure of what you’re doing is difficult and can be very stressful. I think it happens to all of us. Most of us navigate our way through this by turning to a colleague and saying “I’m not sure how to do this, can you help?” and that support makes a huge difference to your stress levels and your ability to do the job well. But what if there is no-one to ask? What if there is no one you to turn to?

Through MFC I’ve met many family members who’ve suffered a traumatic bereavement. I’ve also been that family member, so I really do understand ………

At first, your world is just an incoherent jumble of sounds and faces. Sometimes kind people ask if you’ve eaten that day and then make you food. They guide you towards the shower and put clean clothes out to put on afterwards. You constantly expect your world to return to normal, for that much-loved person to just walk in through the door. But they don’t and every time you realise that they’re not going to, you fall apart all over again. The pain is visceral. It sucks your breath away and your legs literally buckle underneath you.

Just when you seem to be beginning to find a way through this frightening maze of grief you realise you will also be navigating your way through the legal system surrounding the death. Often there is no-one to tell you “now this and this will happen”. There is no-one to tell you what to avoid, what’s essential to remember, what to say and how to present it. Every email, phone call and meeting reminds you that on the other side are knowledgeable professionals, who seem sure of what they’re doing and saying. On the other hand, you, who previously thought you were “on it”, now you are apparently a know-nothing fool. Worse than that, you quickly become aware what a horrendous mistake it is to show any signs of the tearing grief inside you. God forbid you ever cry in front of the person interviewing you. If you want them to treat you as an equal you had better be professional too.

Any traumatically bereaved family will recognise what I’m saying. Some professionals will recognise it too. I can only imagine how extremely difficult and draining it must be, needing to stay professional without losing your empathy and kindness. Through fear and lack of training, some fail, adding to the family’s distress.

One of the worst aspects of trying to navigate the stormy seas of this process for the family is that the entire process is unknown. No-one, not even the most experienced advocate or legal can tell you exactly what will happen next or what order it will happen in. The devasted families navigating an unknown and complex system follow so many different paths. For some it will be an inquest, followed by an investigation. For others, it will be an in-house investigation, followed by an independent investigation, followed by an inquest. For others, it will be a police trial, followed by an in-house investigation, followed by an inquest and those are only three examples of many. All these are genuine cases but all of them took place over a period of 7 – 9 years. Think about that for a moment. Think about the mental, physical and emotional exhaustion of fighting on and on, year after year, often with no clear end in sight and often, no support.

The NHS Guidance “Learning from Deaths” (available to read on the Contacts and Resources page of our website) recommends that all Trusts put families in touch with appropriate advocacy services at the beginning of an investigation. We would recommend not only giving the family a list of advocacy services in their area, but going through it with them to help them identify what is most suitable for them. All too often we hear of cases where the family was sent a list of charities and advocacy services that was so out of date, some no longer existed and the phone numbers given were unobtainable.

We’d recommend that the family is put in touch with the appropriate support before the investigation – basically straight away, as they may find this hugely beneficial. Not all families will want support, not everyone will feel they need an advocate, but we would advise that the information is given to the family anyway. They might decide later on they need it.

Although this may not seem like one of the more important aspects of engaging meaningfully and positively with the family, for the family this could be a game-changer. Someone with the appropriate knowledge who can explain to the family what is likely to happen next and why. This kind of support can be transformative for a family and to give you an idea of why I’ll draw on my own story.

10 months after my son’s sudden, shocking death the Trust wrote to say they considered our case was closed, they would not answer my complaints further or hold an investigation and if we needed anything further to contact their PALS department. The inquest was later that month and I was told we needed no legal representation and it would only take a couple of hours anyway. The steamrollers were ready to run over us and it seemed there was nothing I could do, no-one to turn to and no help for us from anywhere. Then my friend Charlotte who had created my son’s wonderful Person Centred Plan, emailed me to suggest I contact an advocate who was high profile at that time, having recently been involved in a particularly awful case featured heavily in the media. I was embarrassed to contact her, feeling sure our case wasn’t important enough, but I sent her an email. It was actually the War and Peace of all emails as, when I wrote, all the terrible events of the last 10 months came pouring out. She rang me within 5 minutes of reading my email and it was a changing day. Within a week she met with us, organised a legal team with solicitor and barrister and got our inquest deferred to a later date so we had time to get ready. She supported us through the inquest, the subsequent 2.5-year investigation and is now supporting us through our PHSO complaint. Her knowledge, understanding and assistance have been utterly transformative.

All bereaved families deserve the same. I don’t want to think that any more families will go through what we went through, struggling, failing and then finding an advocate almost by chance. Linking a newly bereaved family to excellent support and advocacy should be something with all healthcare providers do automatically.

And if not – why not?

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