Key Reports and Literature

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www.joebingleymemorialfoundation.org.uk
Key Reports and Literature
Forward
Joanne (Joe) Bingley was a dedicated and caring nursing professional who took her life whilst being treated for
severe postnatal depression, leaving behind a 10 week old daughter Emily and husband Chris.
The JBMF charity established in Joe’s memory fully supports the dedicated nursing professionals who have
for over 10 years battled in vain to have the NHS implement the “lessons learned” from so many such
“avoidable deaths” as Joe’s.
Dads and Partners are left picking up the pieces when Mums suffer mental ill-health and this has a
significant impact on relationships and the first “1001 Critical Days” of development for new born children.
Poor maternal mental health has profound and long lasting negative effects on the health, wellbeing and social
circumstances of mothers, their children and their partners. Much of this suffering and long term harm is
avoidable or treatable.
The UK leads the world in the research which underpins our understanding of the field of Perinatal Mental
Health and in the models of care which deal with this challenge. BUT Women in the UK suffer an unacceptable
postcode lottery which deprives 50% of the population of the specialist help they need.
Background
Following the death of the psychiatrist Dr Daksha Emson and her child, the The Royal College of Psychiatry
created the faculty of Perinatal Mental Health as a speciality.
Following release in 2003 of the public enquiry in what happened to Dr Daksha Emson and her baby the
government made promises that the NHS would deliver “Specialists In Perinatal Mental Health” to care for
these women in crisis who suffer from postnatal depression.
More than 10 years later WHY?

More than 35,000 mums are left suffering in silence every year (2)

Mums are too scared to come forward for treatment for fear of having their child taken away (2)

Dads are left supporting Mums to scared too seek help or turn to health care professionals (4)

Health Care Professionals are still asking for “Specialists In Perinatal Mental Health and access to
services so that they can support mums, dads and families suffering the trauma and crisis (4)
The sad facts are:

The NHS has failed to commission services and across more than 50% of the country (1)

There are huge gaps and discrepancies in services throughout the UK (3)

The stigma associated with suffering mental illness has not gone away

Patients suffering mental illness do not get “equality of care” with patients suffering physical illness
References
(1) Patients Association Survey Into Primary Care Trust Commissioning Of Perinatal Mental Health Services (March 2011)
(2) Family Action Survey (2012)
(3) NSPCC Report Into Perinatal Mental Health Care Services (June 2013)
(4) Boots, Thommy’s, Netmums, Royal College of Midwives Survey Into Perinatal Mental Health Care Services (Oct 2013)
(5) Confidential Enquiries into Maternal
Key Reports and Literature
a)
The Confidential Enquiries into Maternal Death
Over 80% of mums deaths by suicide as a result of depression are “avoidable deaths” given that the
symptoms and diagnosis could have been identified soon enough for the correct treatment to be received
that would have saved their lives.
b)
MIND “Out of the Blue? Motherhood and Depression” (2006)
The study identified a number of key areas in which maternal mental health care in England and Wales falls short of
expected standards:
 Lack of provision, particularly specialist services including mother and baby units;
 failure to identify risk factors;
 inadequate treatment of severe disorders;
 lack of coordination between services.
The study stated that all health professionals caring for all women during the perinatal period should be expected to have the
following skills:
 An understanding of the importance of identifying women at risk of developing serious mental health problems and
the associated risk factors;
 An ability to understand and distinguish normal emotional changes and common difficulties from a mental health
problem and being able to recognize the fi rst signs of a problem;
 Listening skills and the ability to be supportive, reassuring and understanding;
 Knowledge of different types of disorders, their clinical features and an ability to distinguish between them;
 Awareness of when and how to make referrals, and the range of different treatment options available
c)
A National Survey of Psychiatric Mother and Baby Units (MBU) in England (2009) –
Whilst a major improvement in perinatal mental healthcare as part of NICE guidelines and NHS Service
Framework, the report http://psychservices.psychiatryonline.org/cgi/content/full/60/5/629 identified many
issues, including admission to a Mother and Baby Unit being a postcode lottery:

Highlights the positives and negatives of these specialist centres

Identified the gaps in service provision and the level of service required

Questions why occupancy levels so low?

Questions why it appears so difficult to gain access or to be referred?
d)
The Patients Association Investigation into PCTs (2011)– (Katherine Murphy, CEO)
The Patients Association performed an independent investigation into the commissioning of Perinatal Mental
Health Services across 150 Primary Care Trusts to identify whether Joe’s case was an isolated incidence or an
example of a far wider problem. What they discovered was appalling:

78% of PCTs do not know the incidence of PND in their region

55% of PCTS are failing to follow NICE guidance and do not provide any written information on PND to mothers
who may be suffering

44% of PCTs are failing to implement NICE guidance and are not part of a clinical network for perinatal mental
health

63% of PCTs do not have a lead in PND services that is a Specialist Perinatal Psychiatrist as required by the NHS
National Service Framework

20% of PCTs do not review adherence to NICE guidelines despite Directors of NHS trusts having legal responsibility
to ensure risk management frameworks are robust and defensible and national policies that mandate a
requirement to monitor adherence
The facts are that service provision for women with postnatal depression can be poor, to non-existent in most areas
of the UK resulting in a postcode lottery of care. Key issues are:

Failure to understand and identify numbers of women who suffer and require services

Failure to commission services

Failure to provide information and support to patients and their carers

Failure to follow NHS National Service Frameworks and NICE Guidelines
http://www.thesundaytimes.co.uk/sto/news/uk_news/Health/article570645.ece
e)
Confidential Enquiries into Maternal Deaths (2011) - (Margaret Oates, Author)
An international benchmark for investigating causes of maternal death, published every 3 years. The enquiry
investigates details of every case and is therefore able to identify learning points and issue recommendations to
be adopted by NHS professionals. Key points include:

For every death there are 150 near misses…therefore learning from death’s is key

Latest enquiry highlights no change in the number of deaths over last 10 years ....why?
http://www.cdph.ca.gov/data/statistics/Documents/MO-CAPAMR-CMACE-2006-08-BJOG-2011.pdf
f)
National Perinatal Mental Health Project Report – A Review of Current Provision (2011) (Dr Dawn
Edge) - The report discloses the lack of perinatal mental health services and details:
 The lack of services for ALL women nationally (England, Scotland and Wales)
 But highlights examples of “Best Practice” –what can and should be available across UK:
 West Midlands (Birmingham MBU and University) Integrated Care Network (ICN
 Nottingham (MBU & University) Integrated Care Network (ICN)
 Family Action (Notts University) – Newpin PND Support project for sufferers of PND
 Netmums (Exeter University) - Online CBT support package for PND sufferers
http://www.nmhdu.org.uk/silo/files/national-perinatal-mental-health-project-report-.pdf
http://leeds2.emeraldinsight.com/journals.htm?issn=17465729&volume=10&issue=3&articleid=1953895&show=pdf&PHPSESSID=iiq16km7ouniblq02j8hv8qlj1
g)
4Children ‘Suffering in Silence’ Survey and National Campaign (2011):
A staggering half of all women suffering from postnatal depression do not seek any professional treatment,
and thousands more are not getting the right treatment quickly enough.

35,000 women are suffering in silence with the condition each year, having a devastating
effect on their lives, and the lives of their families.
http://www.4children.org.uk/News/Detail/Suffering-in-Silence
http://www.rcm.org.uk/midwives/features/down-with-the-kids/
h)
The Tax Payers Alliance (2011):
A report from Tax Payers' Alliance, should be a wake-up call for politicians
 Nearly 12,000 fewer people would die each year if the NHS matched standards in Europe. Says
 The issue is not a matter of spending more money as the UK spends considerably more than many other
European countries.
http://www.taxpayersalliance.com/home/2011/10/major-analysis-nhs-reveals-12000-unnecessary-deaths-year.html
http://www.dailymail.co.uk/health/article-2173120/Hospital-blunders-Almost-12-000-preventable-deaths-hospitals-year-errors-care.html
i)
Health and Safety Executive and Suicide Facts and Statistics

There are around 4,000 recorded suicides per year in the UK.

But it's estimated that suicide is under-reported by 30
to 50 per cent.

It is among the 10 most common causes of death and
the fourth most common for young adults.

Since the 1960s suicide rates have been increasing

The confidential enquiry into maternal deaths reports
between 10 to 30 mental health related deaths each
year and for each death there are approx. 150 near
misses (up to 4500).
Suicides Investigated by Health Safety Executive
and resulting prosecution action
Number of
Number
Year
suicides
resulting in
investigate prosecution
d by HSE
by HSE
2003/04
2
1
2004/05
2
2
2005/06
2
-

The confidential enquiry into suicides reports approx
50% are unnecessary and “avoidable”.
2006/07
1
-

Health Care Services account for 35,000 reportable
Health & Safety incidents each year.
2007/08
2
-

2008/09
4
-
None of these relate to suicides, as suicides are not
normally RIDOR reportable.
j)
The Care Quality Commission finds NHS trusts operating in breach of the law (2011)
Whilst the vast majority of NHS employees are hard-working, dedicated and professional a significant
minority are pulling the service down. The Care Quality Commission inspection of NHS Maternity Services
found:

A fifth of NHS Trusts in Breach of The Law

An "embedded culture" of poor care and unprofessional behaviour

“Catastrophic failings” by NHS staff to provide basic care to patients.
The Care Quality Commission (the regulator) does not have the power or authority to act against
individuals, so it is left to the Directors of NHS trusts to police themselves !
http://www.independent.co.uk/life-style/health-and-families/health-news/inspectors-find-culture-of-abuse-in-nhs-trusts-maternity-services2376931.html
k)
Guidance for Commissioners of Perinatal Mental Health Services (2012)
In May 2012 the Government made a series of pledges about maternity services. One of the key pledges
was to support women suffering from postnatal depression.
But the new “Guidance for Commissioners of Perinatal Mental Health Services “

fails to mentions the role of dads or other family members as carers,

fails to mention the laws behind patient rights and carers rights
Guidance for Commissioners of Perinatal Mental Health Services
l)
A survey by Netmums and the Royal College of Midwives (Nov 2012) found:

Mums mainly (42%) turned to their husband or partner when they first talked about how they felt with
only a third (30%) first mentioned it to a health professional.

Only a third of mums (30%) were told about the possibility of depression by their midwife and only a
quarter ((27%) reported being asked how they felt emotionally during their pregnancy.

Nearly three-quarters (74%) of those surveyed said it often took a few weeks or more likely a few months
before they recognised they had a problem.

Over a third of women who suffer depression during pregnancy have suicidal thoughts.
http://www.rcm.org.uk/college/about/media-centre/press-releases/third-of-women-with-depression-during-or-after-pregnancy-havesuicidal-thoughts-shows-new-survey-11-11-12/
m)
“Assessing and responding to maternal perinatal stress” a published study (2013)
The report investigates the failure of midwives and others to detect and respond to antenatal anxiety and
depression. The findings include:

The Whooley questions only picked up 50% of those picked up by the EPDS, and the follow up help question
only 10%.

Even if patients were referred for extra help most of them did not get it.
This reinforces how good an idea it would be to give every pregnant woman an information sheet at
booking about what emotional symptoms to look out for and what to do for help….. and to give an
information sheet to dads too!
n)
Dads and Postnatal Depression (2013)
10% of dads suffer from the effects of postnatal depression, which in the UK would be 70,000 dads
for who the NHS provides no care and does not mention them in NHS guidelines or national policy.
http://www.telegraph.co.uk/health/healthnews/9226013/Fathers-just-as-likely-to-suffer-postnatal-depression.html
Fathers Reaching Out which aims to help men who suffer from perinatal mental illness and who are left responsible
for caring for mums suffering from perinatal mental illness was set-up by Mark Williams
"As a new father, it was very difficult. It was time for me to learn everything.
 "It's expected that 'you are the man' so you can manage.
 "It's never about how you are feeling, it was all about her.
 "It didn't matter what you did, nothing was good enough.
"I had to give up work for six months.
"There was the new baby, we had a new house and all the added other pressures that Michelle use to deal with and,
most importantly, my wife's illness."
"The isolation was the biggest thing I felt hard to cope with. How was I going to tell my friends if I didn't understand
myself?
 "All I worried about was Michelle getting better.
 "I think there is a stigma attached to mental health.
 "I was exactly like the people who still say "how can you be depressed" - with mental illness, you can't just snap
out of it."
Mark was motivated to act after realising there was very little help, if any, for men in a similar position.
Mark, a father whose wife had post-natal depression for two years launched a website for the partners of
women who are going through the same illness.
http://www.fathersreachingout.com/
o)
NSPCC report All Babies Count: Spotlight on Perinatal Mental Health (June 2013)
In collating the evidence from so many previous investigations this report solidifies what has been known for a long
time that Perinatal Mental Health must be prioritised to prevent the “avoidable deaths” and the “unnecessary
suffering” of mums and their families.
The NSPCC report “Spotlight on Perinatal Mental Health” is a thorough and provocative review of the state of Maternal
Mental Health services in the UK and the NHS failure to deliver on previous government promises.
NSPCC Prevention in Mind – spotlight on perinatal mental illness
NSPCC Report Key Sections and the Relevance of the Joanne Bingley Case Study
Page
Key Sections:
Reference The Facts, the failings and
“What Success Looks Like”
3 to 4
5
11
15
16 to 17
Executive Summary
Falling Through the Cracks - Infografix
In collating the evidence from
so many previous investigations
The Incidence of Illnesses
The Way Forward - Call to Action
What Success Looks Like
this report solidifies what has
been known for a long time that
Perinatal Mental Health must
be prioritised to prevent the
“avoidable deaths” and the
“unnecessary suffering” of
mums and their families
Ask Why – After 12 years so little has
changed for Mums Suffering Mental
Health Problems ?
Page
Key Sections:
Reference The Issues
9
10
10
23 to 24
Joanne Bingley
Case Study
Some women are at higher risk than
others
Factors Associated with increased risk of
perinatal mental health
Maternal Suicides – Many of these deaths
could have been prevented with prompt
referral to specialist services, and in
particular specialist inpatient Mother and
Baby Units
Professionals must work together to
actively manage cases where a risk of
maternal mental illness has been
identified
Ask Why – Dads are left picking up the
pieces?
Joanne Bingley
Case Study
Joe had previously been treated
for postnatal depression raising
the risk she would suffer from
15% to 50% in her pregnancy
The coroner confirmed as fact
the independent investigation,
stating Joe should have been
hospitalised at least 3 days
before she died and if she had
would probably still be alive.
According to the Health Visitor
records none of the 5 perinatal
mental health checks were
completed despite the records
detailing Joe’s previous
treatment for postnatal
depression.
Midwifery records detailed their
suspicions Joe was suffering
postnatal depression but no
referral to services were made.
JBMF Services
NSPCC- spotlight on
perinatal mental illness
– Infografix
JBMF Website Links:
Reports – Maternal
Mental Health
JBMF Services
JBMF Factsheets:
Fact Sheet – Severe
PND Know what to
ask for
Page
Key Sections:
Reference Universal Services
18
Universal Services
Continuity and Consistency of Care
Ask Why – We Need to Support New
Mums ?
Joanne Bingley
Case Study
JBMF Services
The Patients Association report
(2011) on PCT commissioning
perinatal mental health services
found the NHS failing across
more than 50% of the UK
JBMF Research and
Sponsorship:
Maternal Menatal
Health – Summary of
Key Reports Since
2009
21
Midwives should tell mothers and fathers
about perinatal mental illness
Written information must be
provided by Midwives or
Health Visitors to every parent
JBMF Factsheets:
Why am I not
happy_Mums
Foldout zCard
29
Access to social support, including the
opportunity to share experiences and
support of one another
Many local “support Groups”
and 3rd Sector Organisations
provide fantastic support
services proven to be cost
effective and beneficial
JBMF Perinatal
Support Projects:
Training for all midwives, health visitors
and GPs
There must be mandatory
training by accredited trainers
with refresher training very 2
years… to rebuild trust and
confidence in health workers.
JBMF Training
Workshops:
19 to 20
Care Quality Commission Report:
Mother’s death highlights care system
failures - 13 Apr 2012
Page
Key Sections:
Reference The Whole Family Approach
12 to 14
38
Perinatal mental illness can effect
children, beginning before birth
Services must involve and support fathers
Ask Why – Does the NHS not provide
support and information to Dads?
39
In the worse cases where a mother
dies……
Joanne Bingley
Case Study
Significant effects upon the
long-term child include:
 12 times more likely to have a
statement of special needs in
primary school
 More likely to have a
diagnosis of depression
themselves at age 16
According to medical records,
following the death of Joe the
manager of the mental health
crisis team advised the health
visitors to leave the father alone
with only the support of his OAP
parents whilst organising grief
counselling for themselves.
Survivors of Bereavement by
Suicide
JBMF Services
JBMF Signposting:
http://www.fathersr
eachingout.com/
JBMF Signposting:
http://www.uksobs.org.uk/
p)
PMH Experiences of Women and Health Professionals – Report Published 10 Oct 2013
Depression and anxiety among pregnant women and new mums is going under-treated due to lack of
disclosure and poor continuity of care, according to research with 2000 health professionals and 1500
women by organisations including the Royal College of Midwives and the Institute of Health Visiting .
For a full copy of the Report Published 10 Oct 2013 – Click Here
In a shocking indication of the scale of unmet need, the report found that only 18% of patients fully
disclosed their mental health concerns to their midwife or health visitor.
The end result was that 40% of women with a perinatal mental health problem received no formal
treatment or support at all.
The major barriers to discussion around mental health included:

31% of women did not disclose because they saw a different professional at every appointment

1 in 5 women did not disclose because they thought health professionals were too busy (21%)

44% of community midwives, and 18% of health visitors reported there was not enough time to
discuss mental health at appointments

22% of health professionals felt that women wouldn’t want to discuss their mental wellbeing, and

59% reported that women themselves don’t talk about it enough in comparison to their physical
health.

An added barrier to discovery and treatment, health visitors and midwives also felt that the tools for
spotting mental health problems weren’t always sophisticated enough.
The report showed that while nearly all health professionals felt comfortable in raising the topic (97%), both
patients and professionals felt that a lack of continuity of care, and lack of time in appointments, made it
difficult to establish a trusting relationship within which women felt able to disclose mental distress.

Just 1 in 5 (22%) professionals felt that they had good perinatal mental health services available in
their area.
An added barrier to discovery and treatment, health visitors and midwives also felt that the tools for spotting
mental health problems weren’t always sophisticated enough.
Current NICE guidelines recommend the Whooley questions, but professionals felt that the two simple
questions involved – whether a woman feels sad or has lost interest in things – were not sufficient to pick up
on many symptoms of mental health problems.
Midwives and health visitors also wanted more resources to facilitate discussion and treatment.
Over half (55%) wanted:
 Better information on available support services, and
 Resources to support discussion
Whist45% wanted:
 Access to a colleague who was a specialist in perinatal mental health.
The Joanne (Joe) Bingley Case Study
q) Joanne (Joe) Bingley Case Study – A Reason to Act
The tragic death of Joanne (Joe) Bingley highlights the plight of the many thousands of families left in tatters
picking up the pieces, but it also highlights the wider impacts and costs on society.
Link to Power Point presentation - Joanne Bingley Case Study – A Reason to Act
The tragic death of Joanne (Joe) Bingley case studies many of the issues highlighted in the many reports:
Link to articles in s upport JBMF in Support of NSPCC Report – Mother and Baby Units
JBMF in Support of NSPCC Report – Equitable Access
JBMF in Support of NSPCC Report – Training & Education
JBMF in Support of NSPCC Report – The Whole Family Approach
JBMF in Support of NSPCC Report – The True Costs of Failure
r)
Yorkshire and Humberside Independent Investigations into Mental Health Patient Homicides and Suicides 2003
to 2012 - The same key issues have been raised time and time again and mental health trusts fail to
adhere to the “lessons learned”
Treatment Factors - Issues, Recommendations and Areas for Improvement
Poor and Inadequate Risk Assessments
- Clinical records should evidence a robust approach
Poor and Inadequate involvement of the "Family" and external Agencies
Poor and Inadequate "Quality Documentation" - not just tick the box exercise
Internal Reviews - neither timley, thorough or follow best practice
Inadequate Staff Training and Experience
Poor and Inadequate Involvement and Support for Carers
Poor and Inadequate Skills sharing
Poor and Inadequate Sharing of Information
No clear definition of clinical and managerial roles
No compliance checks to National Standards
Safegaurding patients
Poor and Inadequate Service delivery
CPA paperwork to ensure transparency and robustness of CPA audit trail.
All CMHTS are required to maintain clear and auditable minutes of their weekly
meetings
%
Ranking
35%
25%
25%
25%
20%
15%
15%
15%
15%
10%
10%
10%
10%
1
2
3
4
5
6
7
8
9
11
12
13
14
5%
15
Care Quality Commission reported in April 2012 the failure to implement recommendations, from death of
Joanne Bingley, to acceptable quality standards.
s)
The Care Quality Commission reported in April 2012, on their investigation of the NHS trust responsible for the
failed treatment of Joanne Bingley in April 2010 that:

Failure to implement to acceptable quality standards the recommendations from Independent Investigation i.e
“lessons NOT learned” and not implemented.

The NHS trust still had no trained, qualified or experienced perinatal specialists

Evidence that patients in this specific user group being placed at risk......
Care Quality Commission Report: Mother’s death highlights care system failures - 13 Apr 2012
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