#CQCDeathsReview – what families experience

The aspect of the #CQCDeathsReview that I’m most involved with focuses on the experience and treatment of families and bereaved relatives. This is the area that I’m most experienced in, and most interested in. It doesn’t come without some reservations and concerns though, some of which I’ve previously blogged here. I’m lucky because I have Sara as my very own personal Jiminy Cricket.

Last night we had a conversation about parasitic bodies, groups, organisations who seek to bleed bereaved relatives dry to identify their learning (if you’re feeling generous) or maybe just for a few soundbites, ad campaigns, false reassurances (if you’re in a more cynical mood). I know that my motivations are decent, and that my heart is in the right place, but I also know that I could, if things were to go wrong (and I’m aware enough to know my comms aren’t always perfect) be experienced by families as similarly parasitic. Gah, what to do.

In an attempt to reduce this risk, and the risk that the review itself could be experienced as such, I’ve spent some time identifying available evidence to summarise for the team. I use the term evidence very broadly in this instance. It includes personal testimony as shared on social media (blogs and twitter), media coverage and stories, films and patient stories, reviews of collated experiences and I’m still on the hunt for any academic research that has looked at family experiences of NHS death investigations (please drop me a line if you know of any).

What I’ve found, perhaps not surprisingly, are a number of common themes about family experience of NHS death investigations, the complaints process and the PHSO process. The personal testimony is incredibly powerful. If a trust wanted to know how to improve their practices or approach, there are a lot of pointers out there available to them. I’m just going to touch on a few in this post.

1) Families are not always listened to

This is the number one point for me. Families report not being listened to when their loved one is alive, and not being listened to when they’ve died. In an incredibly patronising way this is often reported by investigators or those writing reports or Board minutes as ‘the family did not feel listened to‘. Wahay there, stop that right now. Please. It’s so insulting.

If I’m having a conversation with you and you don’t feel listened to, it doesn’t matter if I was filing my nails, crushing candies and listening to you at the same time because I’m an amazing multi-tasker, you didn’t feel heard, ergo you weren’t listened to. The definition of listen is as follows:


Attention; take notice of; respond to advice or request; effort.

If a family says they weren’t listened to, that’s it, it’s not about them feeling that they weren’t listened to. They were not. End of.

2) Families want answers, not revenge

Time and again families talk about their wish for three things: 1) to find out what happened to their loved one 2) to find out why what happened occurred 3) to ensure it doesn’t happen again to any other family.

I have read countless blogs, tweets and interviews and not one has mentioned the desire for revenge, for heads on sticks, to sue the NHS for millions. Families do not want to fight for answers, but they often find themselves forced into a corner by a system that requires them to become a ‘complainant’, often caricatured as vexatious and unreasonable, just to get anywhere near finding answers to their questions.

There is a sub point within this point which is that families seeking answers want details. They don’t want fuzzy softened versions of events. They don’t want to be treated like children. They don’t want to be patronised. They want to know what happened and why. Which leads me onto my next point.

3) Nothing you say can make things better, or worse

Many of us struggle to know what to say when people are bereaved. Usually a simple sorry, or acknowledgement of their pain will go a long way. Whether due to cultures of suspicion and fear, or whether to do with genuine concern about not knowing what to say to a family member of relative, people don’t say sorry. There are also a number of cases where the NHS have decided to withold information from the family, ostensibly to ‘protect them’. This is possibly illegal and definitely unhelpful. Especially if this material is then shared at a later date, with no prior warning. Stories of new information or paper work or records materialising at an inquest are not rare. If you work in an NHS trust and conduct any sort of investigation when something goes wrong, the patient if they’re alive or family members if they’re not, must know.

If someone is bereaved, reach deep inside you, find your inner human and say sorry. Many families remember years later the compassion that is shown to them by the people who get it right. Be human, please.

4) Families are kept waiting and waiting and waiting

Once someone dies families report entering into a perpetual waiting game. They wait for investigations to be completed, for disciplinary procedures, for NMC or GMC referrals, for inquests, for legal developments, for more investigations, for Police investigations, for HSE investigations and many, many more. While all of these previously unknown processes crawl along at a snails pace, they hit delays time and time and time again. Families are left in a state of limbo with few organisations or individuals, if any, meeting their own promised timescales, and reasonable (any) explanations for the delays rarely offered.

Is it any wonder that some families express a concern that the delaying is a deliberate tactic in the hope that families give up or become ill themselves?

5) Narratives of convenience 

There are several narratives of convenience that you can see when you look at a number of families experiences of investigations. There is the convenience of not listening, the convenience of pneumonia, the convenience of natural causes. The convenience of emails being deleted, the convenience of records going missing. The convenience of confidentiality, the convenience of anonymity. The convenience of staff turnover, morale, or distress.

Some of these could be genuine accidents or mistakes, some of them are almost certainly convenient explanations and excuses to save addressing issues.

These are just a random selection of the themes that emerged from family experiences. There are many more and I’ll blog again if people are interested. Whether these mirror your experiences, or those of someone you know, or whether you think that they are way off the mark, please please please share your thoughts in the comments. If you felt inclined you could also share your experience with the #CQCDeathsReview team by completing the short survey (available until Sunday 14 August) which you can access via their webpage.

3 comments on “#CQCDeathsReview – what families experience”

Angela mays says:

All of the above points mirror our experiences of dealing with the NHS since the death of our daughter two years ago. No listening, patronising dismissive responses, obfuscation, downright obstructive and devious behaviour. Total absence of care, compassion, empathy or candour. Delay after delay and being suspended in limbo. How can the whole investigative process be so appalling? Why are Trust reputations more important than patient’s lives? Why is there no truth, accountability, justice and genuine learning from avoidable deaths?

I’ve watched the tragedy that is the north Wales mental health services for thirty years now – numerous people have died in their ‘care’ and continue to do so. They nearly succeeded in killing me – every time I made a complaint about the negligence and wrongdoing that were so prevalent the sort of tactics that you describe above were used by the NHS to obstruct me and my lawyers. The NHS in Wales is devolved and the Welsh Government is very proud to have avoided the sort of marketization and some of the structures that have been imposed in England. Yet in the face of patient complaint or litigation the same themes emerge. The names of the NHS CEOs signing the letters may be different but the methods used are exactly the same…

Will says:

Regarding how NHS Trusts investigate deaths, the following will prove how Trusts will attempt to avoid an investigation of a death where they knew they were negligent and the depths of depravity they stoop to in order to conceal a misdiagnosis to evade litigation.
Eleven years ago on 23rd August 2005 my partner, in absence of any cancer history, attended Hospital for a ‘day surgery’ biopsy of a neck mass and a Panendoscopy to investigate any possibility of cancer.
As opposed to ever returning home she was admitted to ITU after the Surgeon performed an emergency Tracheostomy following post-op respiratory collapse in the post-op recovery area.
Once stabilised She was transferred to a nursing ward where, on 1st September the Surgeon stated that the biopsy revealed ‘Tongue Cancer’. Plans to discharge home on 4th September, with a planned out-patient appointment for the following day, were delayed when She developed further breathing difficulties.
On 8th September She was investigated, and results recorded a low possibility of Pulmonary Emboli. After consultation it was recommended to increase Clexane (anticoagulant) to 1 ½ times its recommended dose. However, drug charts record its last dose being administered the previous morning at 08.00 am on 7th Sept. and despite recommendations to increase the medication, it was not only unheeded, but completely ceased?
On 9th September, according to medical documentation, a Macmillan nurse discussed plans with my partner to transfer her to a nursing home on 14th Sept. for respite while giving me time to install a Stannah stair-lift at home before her eventual return home.
Another planned out-patient appointment on 12th September, with an Oncologist to discuss Radio/Chemotherapy, was also cancelled.
Despite my every daily minimal 10 hours of presence with Her, documentation shows a ward sister had witnessed the Consultant surgeon’s placement of an undated Do Not Resuscitate Notice within her medical notes. I never knew about this event until I gained medical notes post death and her adult children were unaware of their mother’s hospitalisation, so were neither consulted. Neither doctors, nor nursing staff notified my Partner’s brother of any events until after he had to travel 200 miles on 12th September to identify himself. Therefore, he too never knew about any decisions to implement a DNAR, or commence terminal sedation.
Similarly, less than one hour after my Partner’s adult children had flown from America, on 15th Sept. to be at their mother’s bedside, no medical staff or Doctors told the family, or myself that End of Life Care, eventually known as the, now axed, controversial Liverpool Care Pathway, had been implemented. It is documented by the Macmillan nurse that, upon their arrival my Partner’s children had raised concerns about her rapid decline in health and lack of nutrition and hydration. Undoubtedly, this was a very sudden, extraordinary turn of events for someone who, in absence of any cancer history, had only elected for a day surgery biopsy. Also, to substantiate that sudden death was unexpected, on 19th August, only 4 days prior to her biopsy, her respiratory Consultant had planned her next out-patient appointment 5 months henceforth?
Medical notes proving a planned discharge home on 4th Sept., two out-patient appointments, dated 5th and 12th Sept. and a planned discharge to a nursing home for 14th Sept. (before her final discharge home) were all cancelled and, on 13th Sept the surgeon suddenly documented, “No further treatment options available”.
During the evening of the 16th September after the family and I briefly returned to my home, a phone call summoned us to return to hospital to learn of my Partner’s passing at about 18.30 pm
On 19th Sept. a Coroner’s Officer phoned to inform me that her Death Certificate was available for collection. The officer added “Whilst I have you on the phone I can confirm the cause of death will be recorded as Lung cancer. When I questioned “can you please explain why Lung cancer, when the Surgeon had only diagnosed Tongue cancer? He explained “for the purposes of death registration, we have to state where the cancer had originated”. I thought this was extraordinarily odd when no biopsy or investigation was performed on her lungs. The only histopathology report conducted proves Tongue cancer? To worsen my concerns that something was untoward with her hospital care the Coroner’s officer also told me “because you are only a partner, current English law prevents you from requesting a post mortem”. This has since been proven contrary to law, but when I had no medico-legal knowledge when being suddenly bereaved I trusted a Coroner’s Officer’s information to be honest and trustworthy. Even though I was my Partner’s nominated Next of Kin on every hospital admission, no mention, or consideration was given to the fact that She and I had lived together for 21 years
My consistent belief that her cause of death was contentious and incorrect left me no option than to pursue the NHS Complaints Procedure. The Trust protracted the complaint for 4 years, with the Healthcare Commission’s second Independent Review concluding on 13th February 2009 with their clinical expert stating “from the CD of x-rays, provided by the Trust, none showed any definite evidence of a lung cancer. This confirmed my suspicion that her recorded cause of death was, and remains erroneous. The Healthcare Commission’s clinical expert also commented “it is impossible to be any more definite in the absence of a post mortem examination” and “the fact that her death was recorded as metastatic lung carcinoma was something which it would not be appropriate to question or challenge.”
My MP supported my application to ask the Coroner for an inquest and on 28th March 2011 the Coroner replied declining on grounds that I had not supplied any further information to alter her view that a post mortem or inquest was required.

I have an independent medical expert report proving that my partner certainly elected for a day surgery, in absence of any cancer and the lung nodules that doctors misdiagnosed as lung cancer were perfectly treatable pulmonary emboli. Professor Steve Bolsin, who the NHS ostracised for whistleblowing the Bristol Royal Infirmary baby deaths, has opined that the anaesthetic drugs used were contraindicated for an asthmatic patient, that was the probable catalyst for the post-op respiratory collapse.
I haven’t finished seeking justice as an application to the Attorney General for an inquest, to officially establish the true cause of death, is underway.

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