www.joebingleymemorialfoundation.org.uk Key Reports and Literature (and Joanne Bingley Case Study) 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) 4Children 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 1. The Confidential Enquiries into Maternal Death Over 86% 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. 2. 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 3. 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? 4. 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 5. 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 6. 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 7. 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/ 8. 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 9. 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. 10. 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 11. 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 12. 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/ 13. “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! 14. 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 "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. "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. I had to give up work for six months. 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, a father whose wife had post-natal depression for two years was motivated to act after realising there was very little help, if any, for men in a similar position and launched a website for the partners of women who are going through the same illness. http://www.fathersreachingout.com/ 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 15. 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/ 16. 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 a) 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 is a case study of many of the issues highlighted in reports and research studies since her death, The following Link to articles in support 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 b) South West Yorkshire Partnership Foundation Trust (Dec 2013) – Accept liability and responsibility for the death of Joanne (Joe) Bingley specifically: Failure to comply with and meet the required “duty of care” Failure to obtain “Informed Consent” Failure to discuss or provide information on any treatment options other than “Home Care” Failure to discuss or provide information on perinatal mental health specialist services and in particular Mother and Baby Units (MBU) Accepting that admittance to a mother and baby unit should have been discussed and offered as part of the treatment options at least 3 days before Joe died Accepting that if offered Joe would have accepted hospitalization an d that this treatment would have prevented her death on 30th April 2010 c) Accepting that hospitalization and specialist treatment would have in all probability resulted in a full recovery Accepting that the cause of death, in all probability, was their failure in duty of care. 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: The NHS trust still had no trained, qualified or experienced perinatal specialists Evidence that patients in this specific user group being placed at risk...... The failure to implement to acceptable quality standards the recommendations and actions from the Independent Investigation into Joanne (Joe) Bingley i.e. “lessons NOT learned” and not implemented. Care Quality Commission Report: Mother’s death highlights care system failures - 13 Apr 2012 d) 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% 5% 1 2 3 4 5 6 7 8 9 11 12 13 14 15 The failure to implement “lessons learned” from death of Joanne Bingley. e) Government response to the Francis Inquiry report The NHS will only achieve Don Berwick’s ambition for the NHS to ‘place the quality of patient care, especially patient safety, above all other aims’ if we have candour when mistakes happen and acknowledge all medical errors. Only 24 per cent of the 140 possible contributory factors identified by the inquiry team had been identified in local investigations at the time of the incidents. So 76 per cent of the learning from the incidents had been missed; a situation that there is an urgent need to improve. Valuable lessons about how the NHS could improve patient safety by learning from mistakes. All mistakes/serious incidents must be properly investigated, with audited action plans that address the root causes. If an NHS organisation makes a mistake that causes preventable harm to patients for a second time, it should be regarded as a ‘never event’. The Care Quality Commission (CQC) must make greater use of investigations into serious untoward incidents in its assessments. As well as the new statutory duty of candour, the ‘cultural aspects of care’ will now form part of CQC’s inspection regime. Greater use will be made of incident data, including a commitment for CQC to consider each hospital’s review of serious untoward incidents as part of its pre-inspection activity. NHS England will also launch a programme of new patient safety collaboratives, which will be expected to provide expertise on learning from mistakes and help to provide a ‘rigorous approach to transforming patient safety’. government has issued its response to the Francis Inquiry report