AvMA a virtually unknown charity

Most people have never heard of an amazing charity called AvMA – Action Against Medical Accidents, probably because until the worst happens you have no need to seek them out.

We were introduced to this organisation by the Manchester coroners office, when we were first informed that there would be an inquest into our daughter Violet’s death at Manchester Children’s hospital.

The coroners team said it was highly likely that the Manchester NHS trust would employ their own barrister for the hearing, when it finally happened, and that they wanted us to feel supported, as though someone is on our side. They said they didn’t want us to be bullied by the trust’s representatives and that an organisation called AvMA might be able to help.

You may now ask “well what about legal aid?” It turns out that no matter what your financial situation in this circumstance legal aid is not available for an inquest hearing.  Can you imagine the additional heartbreak and stress for anyone who is grieving a loved one and believes their death might be because of negligence or an accident but has no free legal support?  We were quoted upwards of £1000 by several solicitors to pay for legal advice and support for the inquest.

You may ask “what about no win no fee” though but this also isn’t available for a coroner’s inquest as this hearing looks solely to find the cause of death not to apportion blame or result in any type of compensation.  In order to get a pay out you would have to have a separate legal proceeding in front of a judge rather than a coroner and this would be after the inquest and is a separate legal action entirely.

AvMA provides free independent advice and support to people affected by medical accidents (lapses in patient safety) through a specialist helpline, written casework and inquest support services. They can put patients in contact with accredited clinical negligence solicitors if appropriate. They also work in partnership with health professionals, the NHS, government departments, lawyers and, most of all, patients to improve patient safety and justice.

For us it meant having a trained barrister examine all the documents associated with Violet’s death and care whilst in Manchester Children’s hospital. This proved invaluable to us as she requested certain things we hadn’t noticed were missing, such as when we asked for a copy of Violet’s medical records the hospital hadn’t included any of her X Ray results, of which there were many. We then had time to request them ahead of the hearing.

Violet in Children's hospital MCR
Violet in hospital watching TV

Judy, the barrister that volunteered her services to us, was amazing. We had a conference call with her a few weeks before the inquest and were pleased to see that she’d pulled together a list of her main concerns that all tallied with ours. She had done extensive research, including combing through not just the post mortem report but also the medical reports and all of Violets notes (that we couldn’t bring ourselves to sift through again). She also consulted various medical professionals she knew to get their advice on things.

At the inquest itself both Julia the representative from AvMA and Judy our barrister were amazingly supportive. Judy asked all the questions we wanted and cross examined some of the witnesses, the various specialists and consultants responsible for Violets care while she was in the hospital. We passed Judy notes from the table behind with any additional questions that came to us while they were giving evidence, and before the coroner had finished with a witness, Judy always double checked with us that there was nothing else we needed to ask.

I was originally instructed by the coroner to read out the police statement I had given immediately after Violet died and Judy said she could ask for me to be excused from doing this because I was heavily pregnant and the additional stress it would cause.  We didn’t even realise this was an option and the coroner said he would admit the statement to the records as a printed document instead.  This saved me having to undergo further emotional distress on the day.

Violet on 26th Sept 2016
Violet playing with her balloon the morning of the day she died

Ultimately the inquest couldn’t bring Violet back and we got some answers but not really the resolution we wanted. However I’m not certain we would have received these same answers if we hadn’t have had AvMA and Judy helping us. It was a traumatic day with lots of tears, so I doubt we would have had the strength or wherewithal to ask so many questions ourselves. Their help and support at what was an extremely vulnerable time for us proved to be priceless.

Judy and AvMA only invoiced us for their expenses, which totalled less than £200, including travel costs from London and an overnight stay, so when you consider the thousands a barrister would normally charge this was a bargain. We’ve since given a larger donation to the charity too, so we can help them to help someone else like us who find themselves in an impossibly heart wrenching situation.

AvMA operate as a charity offering support to parents and families like us whose loved ones have died or been seriously injured because of what might have been a medical accident.  This will be the hardest most traumatic time in their lives and as a result they are certainly in need of support, especially around something that could result in answers, justice and in the case of proven negligence, when someone is seriously injured, later on a possible future financial payout too, that could make the difference to quality of life.

I know this charity isn’t as attractive or as immediately heart tugging as a animal, Children’s charity or a cancer cause but rest assured they can make a huge difference to people’s lives at a time when there world has just ended.  When they are already struggling to deal with the grief and shock of losing someone, in our case our 15 month old daughter.

You never think this type of thing will happen to you. That one day your perfect little life bubble could burst and you lose a child or someone close to you but if this happens then you certainly need legal support from someone like AvMA as life at this time is overwhelming and devastating enough without adding a looming inquest to the list.

If you can afford to donate to this amazing charity, even if a small one, then please do so as you could help someone like us who has said goodbye to their child. If you’re a legal professional and would like to donate time or expertise to work with the charity to help someone like us then please do take a closer look as we’re so grateful to Judy for giving up her time and expertise to help us.

Judy explained to us that she understood a little of what we had gone through with Violet, as her daughter had been premature so she had spent lots of time with her in hospital and luckily she was healthy now but she knows how scary it can be to be a parent of a sick child.  She said she can’t begin to imagine then losing them and then the stress of the coroner deciding to launch an inquest into what happened too.  After reading our case she felt compelled to help us.  A truly wonderful lady and we will be eternally grateful to her for her help and compassion.

Here’s a link about AvMA please take a look and consider giving them some support if you can

Thank you

Sarah, Pat & Angel Violet xxx

The Light at the end of the Tunnel?

Well we’re very nearly there as this week hopefully our nearly two year long battle for answers about what happened to our daughter Violet and caused her untimely death will come to the fore.

Ever since she died suddenly on 26th September 2016 we have been chasing hospitals, lodging complaints, hounding for the release of medical records, researching the strange medical terminology and random disease mentions that appear in her post mortem report and waiting for the coroner to finally set a date for the inquest hearing. Finally after over 18 months we got a date and it is this week.

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Will this be the light at the end of our tunnel?  (photos taken beneath a glacier in Iceland)

Fortunately a legal charity called AvMA have now agreed to support us with a barrister to act as our mouthpiece during the hearing and she will ask questions on our behalf. We are so relieved about this as were dreading having to question witnesses ourselves. She has also offered to read out my witness statement on my behalf and this has lifted a lot of my dread, as I was worried it would be too traumatic to stand and relive these moments in the courtroom although I know some parents can find this somewhat cathartic.

My husband and I spent time this weekend drafting questions for our barrister that we would ideally like to be addressed and it is traumatic thinking again about our precious daughter’s last days and moments. Running through all the “what ifs” in our heads that we know may or may not be answered with any certainty.

Violet on 26th Sept 2016

The stress and worry about this week has actually given me a mental block to my writing so apologies for no recent insightful blog posts.

I do have lots of lovely more uplifting things to write about and post, involving travel to amazing places but at the moment these seem too trivial and frivolous to me to be able to focus on when we have more serious emotional events looming.

Stay tuned and I’ll hopefully be able to check in with you all in a week’s time having discovered the light at the end of the tunnel.

 

 

 

 

No answer & no conclusion…as yet

It’s very true that no parent can imagine the pain of losing your child or baby until it happens and it might sound like a cliché but your world, as you know it, really does come to an end.

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Violet’s grave in Southern Cemetery that’s now also Arthur’s resting place too

It is hard enough when you are given a definitive cause of their death through a post mortem report but what happens if it is inconclusive and you have no answers?

If this happens then the coroner may decide to launch an inquest to try to investigate why your child or baby died. What you don’t expect to happen is to have to wait over a year to get some answers from them. We have been waiting now for over 18 months without a death certificate. Our daughter still has her passport and ISA savings account because ironically in the eyes of the law she isn’t in fact officially dead on paper.

We wish she was still alive because she’d be two and three quarter years old now!

We were warned after she died by the coroner’s office that her inquest hearing might take at least a year to schedule because of the complexity of her death at Manchester Children’s Hospital and it was explained to us that criminal investigations have to take priority, which is understandable. We have only recently been given a date of this May for her inquest hearing which will then be a whole 20 months after her death and it makes us wonder whether those involved with her care will even remember events and actions from that long ago?

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We took new balloons to our babies today – Violet would have loved the dancing monkey

In the intervening 20 months of our lives we have been in a state of limbo awaiting answers and have received various contradictory reports from the hospital. We also have had to chase access to many documents such as Violet’s medical records that should be turned around within 40 days of our request, but even these processes that were supposed to be relatively smooth have turned into nightmares. Involving me repeatedly chasing the Manchester NHS Trust and even having to involve a local MP just to get access to something we have a legal right too. The constant battles we’ve had to endure would be enough, without having to deal with our grief and the unknown answers that loom large.

In the 20-month void we also became pregnant with our rainbow baby Arthur and unfortunately lost him 6 months ago at 22 weeks gestation. We had a full post mortem done on him too, hoping again for some answers. We were told he had some genetic problems so we were referred to see the geneticists at St Mary’s Hospital, who are some of the best in the world. This filled us with confidence that they would find the problematic gene so that maybe we could opt for IVF genetic selection or get a pregnancy screened earlier than 20 weeks in the future. We were told this process would take maybe 8 or 9 months in order to be able to identify a particular gene or group of genes that caused his problems. We had a letter a few days ago to say they have checked for all the obvious gene defects but they can’t find anything obvious so it must be something super rare or undetectable by today’s technology.

The not knowing why both our babies died is almost as hard as them dying. I know the answers won’t bring them back but I think it would help my brain to make sense of things and also the practical part of me would want to be able to put new procedures or tests (if possible) in place to prevent reoccurrence in the future.

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Has anyone else gone through something similar? I’d be interested to know.

Sending lots of love & hoping for answers soon.

Sarah x