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'The Ugly Truth'

by Tracey Brown, director of Sense About Science

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Late registration of deaths

Read our open letter to the Prime Minister.

Official statistics on deaths in England and Wales are up to two and a half years out of date. Deaths are added to the national register only when a cause of death is established. Sudden infant deaths, drug related deaths, suicides, deaths that occur in prison or police custody and unexplained deaths need to go to inquest to establish the cause, which can take between 6 months and two and a half years. During this time the death is not recorded on the national register so official statistics are out of date and statisticians, public health officials and researchers can’t know that those deaths occurred.

There are consequences for research of not knowing who died when. Results from a study on treatments for cocaine and other opioid drug users carried out between 2005 and 2009 couldn’t be got until late 2011 because researchers couldn’t be sure that they knew who had died during the study until then. Calendar trends are missed – the reduction in traffic fatalities following legislation on the wearing of rear-seat belts was obscured by delays in registering these deaths but was immediately evident to police forces on the ground. Monitoring and planning during epidemics is compromised if unexplained deaths are not recorded promptly.

Charities who use and fund research affected by these delays, Samaritans, SANE, Transform Drug Policy Foundation, Scottish Cot Death Trust, Howard League for Penal Reform, INQUEST, the Royal Statistical Society and Sense About Science, wrote an open letter to the Prime Minster asking him to change the law to ensure that all deaths are recorded on the national register without delays.

The Government has been aware that official statistics are wrong since the H1N1 “swine flu” pandemic of 2009 when the Royal Statistical Society first highlighted it. The Chief Medical Officer recommended action in 2010. In April 2013 Minister for Health Earl Howe asked his officials to find a solution. Since then the issue has been met with delays and foot dragging by officials in the Department of Health, Ministry of Justice and Home Office.

Síle Lane, Director of Campaigns, Sense About Science said, “For five years researchers have been calling for an end to these astonishing delays in death registration. The issue has been pushed around by officials, who know that the national statistics are wrong but no-one has taken responsibility for addressing it. So researchers, and the charities who use and fund research aimed at helping those affected by cot death, drug abuse, death in custody or suicide, have ended up with no other choice but to insist that the Prime Minister now takes action.”

Scotland and the majority of European countries have uncoupled the fact of death from the cause. All deaths are recorded within 8 days of the death occurring and cause is added later when it has been established. The open letter calls on the Prime Minister to make the law in England and Wales the same as Scotland.

Update 20th June 2014

We were told by someone who tried to get a response from the government:

You won’t be surprised to hear that the matter of responding to me was passed from the Department of Health, to the Ministry of Justice, and then passed on again to the Home Office, who never sent a response. So, three departments, no action. No wonder there’s been no progress on this.

Update 27th June 2014

Ian Bushfield:

I've been trying to get the Prime Minister to respond to our letter all week.

On Tuesday I called Number 10 and they told me the letter had been sent to the Department of Health for a response.

On Thursday I called the Department of Health and was told they had "rejected the letter" and passed it over to the Ministry of Justice a couple days earlier.

I immediately called the Ministry of Justice and they told me it wasn't their responsibility and they were sending it back to the Department of Health as we spoke. The Ministry of Justice was also going to make sure that the Prime Minister's Office required the Department of Health to give us a response.

Today I called Number 10 again and they promised the Department of Health will give a response and that the Prime Minister's team will "chase them" on it.

The level of ineptitude is staggering. No one wants to take responsibility for this, no wonder it's been kicked around departments for five years.

Update 4th July 2014

Ian Bushfield:

I called Number 10 again yesterday and they told me our letter was now with the Home Office who had been discussing a response with the Ministry of Justice.

This morning, I called the Home Office to ask them when we would expect a response but they didn't seem to know anything about it and suggested I get in touch with the Cabinet Office instead.

This is the third ministry in two weeks to dodge the issue. When is someone going to take responsibility for this?

Update 11th July 2014

Ian Bushfield:

On Tuesday I called Number 10 and was told that our letter was with the Ministry of Justice again and that we could expect a response by the end of this week.

Today Number 10 told me that the Ministry of Justice failed to give a response by Thursday but we should have it early next week.

Update 30th July 2014

We received a reply from the Government but they have no plans to change the law. Read more.

Coverage

BBC Radio 4 Today programme (starting at 48:23)

The Independent NHS death stats can be years out of date and 'pose public health risk'

The Telegraph Death registration faults could be costing lives

The Times Death record 'failures' risk nation's health (£)

Belfast Telegraph Warning over death register delays

Yahoo UK Warning over death register delays

The BMJ Why the delays in counting the dead?

Research Fortnight The UK Government has no plans to tackle delays in registering deaths in England and Wales (£)

Comments

Professor Sheila M Bird, MRC Biostatistics Unit and Royal Statistical Society:

 “Legislation is needed to restore the credibility and competency of our registration system. A whole range of studies in the public interest and that help to protect the public health rely fundamentally on knowing who has died and when. It simply beggars belief that, in the 21st century, the registration system in England and Wales fails so basic a test. By failing properly to count the dead, discoveries that these studies should make are delayed or undermined. It is reprehensible because it is so – readily avoided – by legislative change. Scotland and most developed nations in Europe manage this. Why not England and Wales?”

“We have waited 5 years since the H1N1 pandemic of 2009 for the registration system to be sorted. We have waited long enough. There is an apparent dearth of legislation in the forthcoming parliamentary year. The Royal Statistical Society commends to both Houses of Parliament and to all parties the urgency of our need to count the dead properly.”

“Members of both houses have been shocked by this carbuncle on the face of the statistical system in England and Wales, as is a disbelieving public. I very much hope that the Prime Minister and his Ministers will act to save our statistical blushes and in strong support of the UK’s public health and pharmaceutical sciences.”

Samaritans:

“Samaritans’ main aim is that fewer people die by suicide. In order to achieve this aim, it is vital that Samaritans understand how many people from different demographics die by suicide. The problem of registration delays is two-fold for Samaritans, firstly, the delay of suicide death registrations has obvious implications of slowing down the process of understanding how many and which groups are dying by suicide; but also since our suicide prevention efforts extend across the UK and Ireland, a further challenge in relation to comparability is exacerbated. Differences such as these between countries might indicate that there are different patterns of suicide in the different nations, and therefore Samaritans should focus their attention differently in different places; or differences in trends over time and patterns of suicide may be a consequence of differing recording and registration process, and might lead to activities such as ours to be focused less appropriately and effectively.”

Read the full statement from Samaritans

Marjorie Wallace, Chief Executive, SANE: 

“This delay particularly affects people with mental illness and their families, including those who take their own lives, as it may be many months – or even years – before the death is recorded in the official statistics. This can not only make the figures misleading but cause distress to families, who are left in limbo.”

Lynsay Allan, Executive Director, Scottish Cot Death Trust: 

“The process in Scotland allows for a holding cause of death to enable release of the body and inform statisticians of the incidence of sudden unexpected deaths. It is accepted that the final number will be a little smaller but it is important to us to know the incidence of cases presenting so that we know correct procedures are being followed and that the family are being supported and informed appropriately from the outset. We also want to ensure that any public health messages that need to be reinforced such as safe sleeping can be acted upon as quickly as possible.”