Key Reports and Literature

www. joebingleymemorialfoundation .org.uk

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=1746- 5729&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 Suicides Investigated by Health Safety Executive to 50 per cent. and resulting prosecution action Year Number of Number . It is among the 10 most common causes of death and suicides resulting in the fourth most common for young adults. investigated prosecution by HSE by HSE 2003/04 2 1 . Since the 1960s suicide rates have been increasing 2004/05 2 2  The confidential enquiry into maternal deaths reports between 10 to 30 mental health related deaths each 2005/06 2 - year and for each death there are approx. 150 near misses (up to 4500). 2006/07 1 -

. The confidential enquiry into suicides reports approx 2007/08 2 - 50% are unnecessary and “avoidable”. 2008/09 4 - . Health Care Services account for 35,000 reportable Health & Safety incidents each year.

. 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-services- 2376931.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-have- suicidal-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: Joanne Bingley Reference The Facts, the failings and Case Study JBMF Services “What Success Looks Like”

3 to 4 Executive Summary In collating the evidence from 5 Falling Through the Cracks - Infografix so many previous investigations NSPCC- spotlight on perinatal mental illness – Infografix 11 The Incidence of Illnesses this report solidifies what has 15 The Way Forward - Call to Action been known for a long time that JBMF Website Links: 16 to 17 What Success Looks Like Perinatal Mental Health must be prioritised to prevent the Reports – Maternal Ask Why – After 12 years so little has “avoidable deaths” and the Mental Health changed for Mums Suffering Mental “unnecessary suffering” of Health Problems ? mums and their families

Page Key Sections: Joanne Bingley Reference The Issues Case Study JBMF Services

9 Some women are at higher risk than Joe had previously been treated others for postnatal depression raising 10 Factors Associated with increased risk of the risk she would suffer from perinatal mental health 15% to 50% in her pregnancy 10 Maternal Suicides – Many of these deaths The coroner confirmed as fact could have been prevented with prompt the independent investigation, referral to specialist services, and in stating Joe should have been particular specialist inpatient Mother and hospitalised at least 3 days Baby Units before she died and if she had would probably still be alive. 23 to 24 Professionals must work together to According to the Health Visitor JBMF Factsheets: actively manage cases where a risk of records none of the 5 perinatal Fact Sheet – Severe maternal mental illness has been mental health checks were PND Know what to identified completed despite the records ask for detailing Joe’s previous Ask Why – Dads are left picking up the treatment for postnatal pieces? depression. Midwifery records detailed their suspicions Joe was suffering postnatal depression but no referral to services were made.

Page Key Sections: Joanne Bingley Reference Universal Services Case Study JBMF Services

18 Universal Services The Patients Association report JBMF Research and Continuity and Consistency of Care (2011) on PCT commissioning Sponsorship: perinatal mental health services Maternal Menatal Health – Summary of Ask Why – We Need to Support New found the NHS failing across Key Reports Since Mums ? more than 50% of the UK 2009

21 Midwives should tell mothers and fathers Written information must be JBMF Factsheets: about perinatal mental illness provided by Midwives or Why am I not Health Visitors to every parent happy_Mums Foldout zCard

29 Access to social support, including the Many local “support Groups” JBMF Perinatal opportunity to share experiences and and 3rd Sector Organisations Support Projects: support of one another provide fantastic support services proven to be cost effective and beneficial

19 to 20 Training for all midwives, health visitors There must be mandatory JBMF Training and GPs training by accredited trainers Workshops: with refresher training very 2 Care Quality Commission Report: years… to rebuild trust and Mother’s death highlights care system confidence in health workers. failures - 13 Apr 2012

Page Key Sections: Joanne Bingley Reference The Whole Family Approach Case Study JBMF Services

12 to 14 Perinatal mental illness can effect Significant effects upon the children, beginning before birth 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 38 Services must involve and support fathers According to medical records, JBMF Signposting: following the death of Joe the http://www.fathersr Ask Why – Does the NHS not provide manager of the mental health eachingout.com/ support and information to Dads? 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. 39 In the worse cases where a mother Survivors of Bereavement by JBMF Signposting: dies…… Suicide http://www.uk- sobs.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 % Ranking Poor and Inadequate Risk Assessments - Clinical records should evidence a robust approach 35% 1 Poor and Inadequate involvement of the "Family" and external Agencies 25% 2 Poor and Inadequate "Quality Documentation" - not just tick the box exercise 25% 3 Internal Reviews - neither timley, thorough or follow best practice 25% 4 Inadequate Staff Training and Experience 20% 5 Poor and Inadequate Involvement and Support for Carers 15% 6 Poor and Inadequate Skills sharing 15% 7 Poor and Inadequate Sharing of Information 15% 8 No clear definition of clinical and managerial roles 15% 9 No compliance checks to National Standards 10% 11 Safegaurding patients 10% 12 Poor and Inadequate Service delivery 10% 13 CPA paperwork to ensure transparency and robustness of CPA audit trail. 10% 14 All CMHTS are required to maintain clear and auditable minutes of their weekly meetings 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