Joanne’s Story: A Reason to Act What’s Going Wrong ! Presented by Chris Bingley

1. Joanne’s Story: A Reason to ActWhat’s Going Wrong ! Presented by Chris Bingley Charity Registration Number: 1141638

2. Why I am here ……

3. My Inspiration • My Inspiration: • Anthony Harrison, Angela Harrison Trust , on asking how he coped? • “You make it through the grief somehow ……but the loss never leaves you” • Dr Margaret Oates, author of the Independent investigation into Joe’s death, • on reporting the findings that Joe’s was yet another “avoidable death” • “It needs someone who has suffered to stand-up and shout out …… • .. people listen to patients with a voice….it’s a powerful voice” • Katherine Murphy, The Patients Association Chief Executive , on completing the survey showing the failure to commission services across over 50% of UK • “We need one voice …. professionals, charities and user organisations together” • Albert Pike, • What we have done for ourselves alone dies with us; • What we have done for others and the world remains and is immortal

4. What’s going wrong? • Why ? • A National Scandal • The NHS Constitution • Care Standards • Joe’s Pathway to Despair • The NHS Response After Joe Died • The Whole Family Approach • Support Following Bereavement • Dads as “Carers” • The Consequences of Failure • The True Costs of Failure • Avoidable Deaths and Suffering • Mums and Dads at Risk • Best Practice Treatment

5. Why ….? • Why Joe? • Joe was dedicated and caring nursing professional • Trained initially through Huddersfield Royal Infirmary to qualify as a Registered Nurse and then deciding to complete an Honours Degree at Huddersfield University • She spent 20 years working at Huddersfield Royal Infirmary where she was Sister on day surgery. • Her funeral attended by over 400 people included ex-patients and many of her colleagues from HRI • I felt all their eyes on me asking the same question that I kept asking myself… • Why ?

6. A National Scandal The death of Joanne (Joe) Bingley highlights a national scandal • Over the last 10 years, despite Ministerial promises, the development of NHS Service Frameworks and NICE Guidelines the NHS has failed to commission Perinatal Mental Health Services across more than 50% of the country. • Mental Health Services are acting unlawfully, failing to follow care quality standards, to implement safe systems of work, to employ the required specialist perinatal psychiatrists, to inform patients of their rights and to inform patients of the risks of their treatment. • 35,000 mums suffering in silence every year too scared to seek help (i.e. half of all mums affected by mild to moderate postnatal depression). • Many Mental Health patient suicides and homicides are “avoidable deaths” and potentially a result of unlawful treatment and care. • 10% of Dads suffer from postnatal depression but the NHS provides no support

7. Joe’s Pathway to Despair ...1 of 3 • 2008 Previous termination, miscarriages and treatment for depression documented in Health Visitor records – NONE of the 5 mental health risk assessments described in the Kirklees Maternal Mental Health Care Pathway as the responsibility of Health Visitors completed, in breach of care quality standards and safe systems of work. • 18 Feb 2010 Emily Jane Bingley Born after 5 days in labour • 22 Feb 2010 Breast Feeding problems – 1st Hospital stay with positive results • 10 Mar 2010 Breast Feeding problems – 2nd Hospital stay • The medical records detail Joe’s un-consolable crying, anxiety, feelings of failure and the suspicions of Midwife she was suffering postnatal depression. But no clinical risk assessments completed, no referral and no information given to patient or husband • Treatment for her lack of hind milk and crying baby was to have Joe connected to a milk pump between feeds with intent to increase milk production over 10 days. • Treatment concentrated solely on the problems of Joe continuing to breast feed. • 14 Apr 2010 Easter Holiday emotional breakdown • GP diagnosis and starts drug treatment for Postnatal Depression and lack of sleep • 22 Apr 2010 Suicidal feelings and intent – plans to drive herself and baby into a wall • GP listens to options considered but ruled out as they would not guarantee death • Mental Health Crisis Team contacted, diagnosis severe postnatal depression

8. Joe’s Pathway to Despair …2 of 3 • 22nd April - At initial assessment home care recommended as course of treatment with no other treatment options considered or discussed. No written information of any kind provided nor any information on support groups or how to care for wife. • 23rd April - Care Plan provided to the patient and the husband marked as provided to ‘The Carer’. But no information provided about ‘Carer Rights’ and no ‘Carers Risks Assessment’ as required by The Carers Acts, in breach care quality standards • At no point is any referral made to specialist perinatal psychiatric services or to a consultant of any kind, in beach of care quality standards and NHS Frameworks • 27th April – The Independent Investigation states that the clinical evidence substantiate that Joe should have been hospitalised at least 3 days before she died: Coroners Evidence regarding the visit by the Care Team that day: When Joe requested “please take me with you” her request was ignored and brushed aside by the care worker treating her that day. In the same meeting Joe left the session unexpectedly (withdrawing from the treatment). Despite Joe’s medical record detailing her suicidal plans, a decline in mental health and her obvious state of anxiety the care worker never explored Joe’s state of mind. Whilst sat in her car ready to leave, the husband knocked on the care workers window to explain Joe had left the property without telling anyone. Despite having recorded the husband’s anxiety and distress in her notes, knowing his wife was suicidal, she told him to contact the police if his wife did not return and then drove away!

9. Joe’s Pathway to Despair …3 of 3 • 29th April • Mental Health Crisis Team Dr and Nurse visit AM – husband (The Carer) not attending but patients mother in attendance: • The Dr for the first and only time during the entire treatment records signs of improvement, and decides there is no need to discuss alternate treatments • Health Visitors visit PM - husband (The Carer) not attending but paternal grandparents in attendance: • Recorded high levels of anxiety, despair, inability to cope, her feelings that mental health service wasting her time and her intent to withdraw from care • HV contacts Crisis Team Manager who over rules HV concern and ignores risks • HV raises her concerns of HV’s being unable to cope as she is told Crisis Team is planning to stop providing support, and she contacts her manager to log risks. • No-one contacts Husband (The Carer) to inquire of patients state or discuss risks prior to the Bank Holiday weekend. • 30th April 2010 - Joanne walks on railway tracks, throwing herself under a train • 4th May 2010 - On first day back at 9:05am the Crisis Team Manager contacts the Health Visitors, the medical records detail the purpose was to explain that at no time did Joanne show suicidal intent else they (The Crisis Team) would have taken action.

10. The NHS Response after Joe died • Huddersfield Royal Infirmary • - Excess stamp duty to pay for • - Letter of condolesnces and apology for your loss • Mental Health Crisis Team Admin Dept • - Patient Satisfaction Questionaire? • - Reminder to complete Patient Satisfaction Questionaire? • Mental Health Crisis Team Manager in discussion recorded by Health Visitors: • Patients husband has family support so do not contact for 6 to 8 weeks • Support for Crisis Team staff and HV staff affected by Joe’s death was to be organised through normal channels • Mental Health Crisis Team Director and Manager , in a meeting be held in the patients home with her husband and GP friend, prior to investigating Joe’s death: • “Guidelines are just guidelines we don’t have to follow guidelines” • “ These things just happen”

11. The Whole Family Approach The NHS currently does not commission or provide any support for Dads supporting those suffering from postnatal depression or for Dads who suffer from postnatal depression. Even the new specialist commissioning guidelines on perinatal mental Health fails to mention any where the role dads and partners play. • Following Joe’s death nobody contacted her husband Chris from the Mental Health Crisis Team that had been treating her. • The clinical records detail how the Crisis Team Manger contacted the Health Visitors advising them as “he has the support of his family” DO NOT TO MAKE CONTACT FOR 6 TO 8 WEEKS • Whilst at the same time the Crisis Team Manager discussed ensuring support was provided to members of their own teams members and Health Visitors staff. Thankfully the Health Visitors ignored that advice and left a hand-written letter offering their condolences and telling Chris to contact them any time he needed their help or support…….. “Evidence of a Caring Profession”

12. Support following Bereavement Support for those whose life’s are left in tatters after bereavement needs to be dramatically improved. The sad truth is I had to learn for myself, without any NHS support, about the significant effects on my daughters long-term development that are expected as a result of the trauma she has already suffered • 12 times more likely to have a statement of special needs • More likely to have a diagnosis of depression at age 16 I also had to learn of the increased risk she will suffer the same severe form of postnatal depression as her mum……… FROM 3% TO 6% ALONG WITH THE MUCH GREATER RISK THAT SHE WOULD NOT RECEIVE THE CORRECT SPECIALIST HEALTH CARE IF SHE DID SUFFER > 50% Support for those left in tatters after these “avoidable deaths” needs to be dramatically improved. Survivors of Bereavement by Suicide http://www.uk-sobs.org.uk/

13. Dads as “Carers” The NHS Choices Website gives as an example a “a Carer” is “someone looking after a person between mental health between crisis”. The crucial role “Carers” play, whether dads, partners, family members or friends, must be recognized by service providers. Commissioners need to ensure “Carers” must receive the information and support that they are legally entitled, as part of the initial treatment of sufferers. • The NHS currently does not commission or provide any support for Dads whether they are supporting those suffering from postnatal depression or Dads who are suffering themselves from postnatal depression. • Even the new Specialist Commissioning Guidelines on Perinatal Mental Health fails to mention anywhere the role dads and partners play ! • “Carers” have legal rights that all Service Providers must consider and act upon ! There needs to be a dramatic improvement in the support for dads (along with other types of partners, grandparents and family members) who are the “Carers” of those mums suffering from maternal mental illness and are the main providers of support.

14. The Consequences of Failure • The death of Joanne (Joe) Bingley caused horrific trauma to her husband, to Joe’s family and to her friends. • But also all of those who witnessed Joe’s body being torn apart by the train, her internal organs being spread across the tracks, the blood pool that resulted and her upper torso being dragged along the tracks, until the train came to rest. This traumatised: • The 2 train drivers off work needing treatment • The members of public, off work needing treatment • The 7 year old child waiting on the platform to go to school • And all the other people who had to deal with the incident • All this suffering as a result of the NHS staff failing to obtain “informed consent”, failing to provide access to specialist perinatal health services and failing to admit Joe to a specialist Mother and Baby Unit, even though places were available at the time of her death in Leeds, Manchester and Nottingham. • Following my wife’s death I was driven by my own grief and the despair. • However, at the Coroner’s Inquest the true consequences and costs of the failure to prevent what was an “avoidable death” was brought home to me when told of the many others affected, including the 7 year old child !

15. The True Costs of Failure The costs of just one “avoidable death” like Joe’s would cover the costs of providing all mums and dads with the information they require and the extra mother and baby unit beds needed. The estimated cost of the emergency response (£2m) and the economic costs of closing the Trans-Peninne train line for several hours (£20m), hardly feels relevant when compared to the widespread human costs. Proper care would have cost: 15p for the JBMF information card for mums & dads (900,000 *25p = £176,000 per year for all mums) 2p for the JBMF Severe Postnatal Depression checklist/leaflet (22,000 @ 5p = £1,000 for all sufferers) just £17,000 for the 56 days treatment Joe needed to live! £318 per day for treatment in a Mother and Baby Unit Bed The sad fact is each year there are up to 66 maternal suicides due to psychiatric causes of which 86% are “Avoidable Deaths” (diagnosis and treatment was possible). “Avoidable Deaths” cost the economy in excess of £300m every year…. But ….this excludes costs of NHS negligence claims, currently 1/5th of NHS Budget £18bn.

16. Avoidable Deaths and Suffering • 35,000 mothers suffer in silence every year - 50% of mums who suffer from postnatal depression are too scared to come forward for treatment. • Most mums turn to their partner for help rather than to a health care professional !

17. The NHS Constitution (Health Act 2009) On 19 January 2010 The Health Act 2009 came into force placing a statutory duty on NHS bodies, primary care services, independent and third sector organisations in England. The Constitution clarifies patient ‘rights’ such as: Informed Consent • To be able to give valid consent to treatment is a fundamental right and absolutely central in all forms of health care. • You have the right to be involved in discussions and decisions about your healthcare, and to be given information to enable you to do this. • So a patient can make “informed decisions” they need access to impartial, evidence based, accurate, readable, information. • This is especially important when a person has severe depression. Treatment Options • Patients have the right to be treated with a professional standard of care, by appropriately qualified and experienced staff. • You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you. • You have the right to be given information about your proposed treatment in advance. Learning by Experience • You have the right to expect NHS organisations to monitor, and make efforts to improve, the quality of healthcare they commission or provide. • In the case of an NHS body or private organisation, it must take reasonable care to ensure a safe system of healthcare – using appropriately qualified and experienced staff.

18. Care Standards Postnatal Depression is not a new problem • 2000 Perinatal Mental Health created a specialist area by Royal College of Psychiatry following the death of Dr Daksha Emson and her baby. • 2002 Confidential Enquiry into Maternal Deaths highlightssuicide as a result of postnatal depression the leading cause of maternal death. • A plethora of policies, guidelines and legislations follow: • Carers Acts 1990, 1995, 2000, 2005 • Specialised Mental Health Services (2004) • National Service Framework Maternity Standard 11 (2004) • Perinatal Healthcare in Prison – A Scoping Review of Policy and Provision (2006) • NICE Guidelines CG90 Depression in Adults (2007) revised (2009) • NICE Guidelines CG45 Antenatal and Postnatal Mental Health (2007) • NHS Acts, Human Rights Act, The NHS Constitution (Health Act 2009) • 2010 Confidential Enquiry into Maternal Deaths - suicide is still a leading cause of maternal death.

19. Mums and Dads at Risk Over 22,000 mothers are placed at risk every year • Statistics on postnatal depression show that: Based upon 2009 ONS Birth Rates NationallyYorkshire 1 in 2 mums suffer Baby Blues 353,124 33,179 15% Mums suffer Postnatal Depression 105,937 9,954 3% suffer Severe Postnatal Depression 21,187 1,991 1 in 500 suffer Puerperal Psychosis 1,412 133 • NICE guidelines specify that those who suffer severe postnatal depression should be referred to a specialist perinatal psychiatrist – less than 37% of PCTs have commissioned specialist services. • NICE Guidelines state the preferred treatment for severe PND or Puerperal Psychosis is hospitalisation in Mother and Baby Units (MBUs) – only 91 beds exist with places for max 593 mums • 10% Dads suffer Postnatal Depression too – but no specialist services are available for them

20. Best Practice Treatment 2/3rds of mums suffer from some effects of depression during or after pregnancy Peurperal Pscyhosis 1 in 500 Mums 1,412 per annum Acredited - Specialist Services Mother & Baby Units Specialist Perinatal Psychiatrists Telephone support, Screening and Assessment Specialist Crisis Home Resolution Teams Severe Postnatal Depression 3% of Mums 21,187 per annum Mild to Moderate Postnatal Depression 10% to 15% of Mums Integrated Care Networks NHS (Examples – Nottingham, Southampton) GP’s Midwives, Health Visitors, Care Workers 3rd Sector Support (Examples) Family Action - support program & befrienders Net Mums - online CBT & chat rooms House of Light - call-line and drop in groups Joanne Bingley Memorial Foundation information, awareness, training & education 84,750 per annum The Baby Blues 50% of Mums 353,124 per annum Numbers based on 706,248 live births in 2009 and the agreed rates of occurence

21. NICE Care Quality Standards

22. Specialist Commissioning Guide

23. Latest Research & Expectations

24. Impact on Service & Outcomes

25. Patient Centered Support Services 2/3rds of mums suffer from some effects of depression during or after pregnancy Peurperal Pscyhosis 1 in 500 Mums 1,412 per annum Acredited - Specialist Services Mother & Baby Units Specialist Perinatal Psychiatrists Telephone support, Screening and Assessment Specialist Crisis Home Resolution Teams Severe Postnatal Depression 3% of Mums 21,187 per annum Accredited - Integrated Care Networks NHS GP’s Specialst MWs, HVs HCWs 3rd Sector and Local Volunteer Support Family Action – peer support & befrienders Net Mums - online CBT & chat rooms House of Light - call-line and drop in groups Joanne Bingley Memorial Foundation - awareness, support tools, training & education Patient Centred “Whole Family Approach” Dads (Partner) and Family Support & Referral Self Monitoring, sign-posting & Referral Mild to Moderate Postnatal Depression 10% to 15% of Mums 84,750 per annum The Baby Blues 50% of Mums 353,124 per annum Numbers based on 706,248 live births in 2009 and the agreed rates of occurence

26. The Joanne (Joe) Bingley Memorial Foundation • Founders Statement • How we help

27. JBMF – Founders Statement      Joanne, or Joe as she preferred to be called, was a nurse with over 20 years experience. She was dedicated, caring and diligent as are most health care professionals I have met. But Joanne was let down by the very NHS organisation that she gave everything to and just 10 short weeks after giving birth to her much longed for daughter Emily, whilst being treated for severe postnatal depression she took her own life.  “The charity exists to ensure future generations such as my daughter have access to the appropriate care and support, that services adhere to care quality standards and to inspire sustainable change in the perception and provision of maternal mental health services in the UK”

28. JBMF – How we help • How the foundation delivers it’s aims: • Website and information leaflets provide information on what you need to know so dads, grandparents and friends can help. • We publish stories in national media, Twitter, Facebook and our website to encourage open discussion and raise awareness • Knowledge of ‘Best practice’ – legislation, care quality protocols, befriender and peer support groups, self help, supervision, etc; presenting at seminars and workshops to inform commissioners, dept health, parliament, etc. on patient and service issues. • We provide training/education workshops for support &care workers • We have supported research including: • The Patients Association survey of Primary Care Trusts • Kings College User Group • Through the establishment of the Maternal Mental Health Alliance we aim to inform parliament and NHS policy makers.

29. Maternal Mental Health Alliance • Maternal Mental Health Alliance • MMHA – Who we Are • Theory of Change • Key Workstreams and Milestones

30. MMHA – Who We Are The Maternal Mental Health Alliance (MMHA) is a coalition of organisations:

31. Theory of Change

32. Action Education Key Workstreams & Milestones 2013 Inception 2014 Feasibility 2015 2016 Delivery 2017 20?? Business As Usual Awarenes Applications & Tools – media based, open access, self help app’s, self referral, map of services, etc. Gap Analysis User Needs & Services Gaps Support Groups – Coordination, Education, Information, Supervision, “Integrated Care Networks” User Forums – Patients, Carers, etc. National User Group Alliance MMH Specialist Commissioning Group National, Compliant “Integrated Care Networks” GP Commissioning Groups Gap Analysis Best Practice vs Current State Specialist (Accredited) Resources – Health Care Professionals and Volunteer Support Education & Training – Accreditation, Evaluation, CPD, etc. Regional Workshops Feasibility Study Seminars & Conferences MMHA Website Applications & Tools – media based, open access, self help app’s, self referral, map of services, etc. Parliament Launch Parliamentary Commission Annual Review Annual Review Annual Review Annual Review Annual Review Parliamentary Support MMHA National Campaigns MMHA Formed National Awareness Campaigns “Integrated Care Networks” MMHA Member Accreditation MMHA Core Resources / Funds Review Feasibility &Business Case Implementation & Delivery Design

33. Finally Charity Registration Number: 1141638

34. Why ….? • Why I am here ……. • Joe was dedicated and caring nursing professional • In her 20 years working at Huddersfield Royal Infirmary she enjoyed and cherished most of all her time mentoring, supporting and training others • There is a stepped change underway, back to the core values of “care” and “patient focus” • You are as yet un-tainted and unblemished • Do not accept from managers, or Directors • Guidelines are just guidelines • we don’t have to follow • These things just happen

35. Uncovering the truth “What I have uncovered during my investigations and enquiries is both tragic and shocking. It is my hope and desire that by openly publicising the horrendous treatment given my wife and I that people come forward and support my call for the complete implementation of the policies and guidelines required to prevent such catastrophic events happening again.” Chris Bingley

36. Why I am here …… Why are you?