Joanne’s Story: A Reason to Act Presented by Chris Bingley Charity Registration Number: 1141638
Why I am here ……
The Utter Devastation of Loss ! Grief is a process ……. you have to keep going to get through it? • Everything is dark, you can see no end, you have to find strength within you • Follow a path until you find light…. or find help http: //www. uk-sobs. org. uk/ 1 Corinthians 13: …. faith, hope and love; and the greatest of these is love ! • Love …. . your best friend is gone, taken herself away from you • Hope …. . there is none, your dreams and plans destroyed • Faith …. . shattered by the knowledge that these are “avoidable deaths” When nothing is left what do you live for? • Emily …. . Was too young to have a bond, babies just cry, eat, sleep and pooh! • There is nothing left ……. ?
My Inspiration: • Anthony Harrison, Angela Harrison Trust “You can make it through the grief ……” • Dr Margaret Oates, on reporting the findings of her Independent investigation into Joe’s death “It needs someone who has suffered to stand-up and shout ……. . people listen to patients with a voice…. it’s a powerful voice” • Katherine Murphy, The Patients Association Chief Executive “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
Why I am here ……
Why am I doing this…. The People: The Reasons: • Daksha Emson … 10 years on Mums still • Emily Jane Bingley could be another die avoidable and unnecessary deaths - Avoidable and Unnecessary Death ? (MP, Secretary for Health empty promises) • NHS failure to follow care quality • “Guidelines are just guidelines we don’t standards, NHS Policies, National have to follow guidelines” … “These Service Frameworks and UK law things just happen” …. (NHS prior to investigating Joe’s Death) • The lack of justice and accountability • NHS and Dept Health failure to properly investigate and to follow due process • Hundreds of potentially unlawful • Other Mums, Mental Health Patients and deaths and unnecessary suffering the General Public at risk • I must protect my daughter’s life • I ask myself …. . Who else cares? …. . when she has children
Why ? Charity Registration Number: 1141638
Why …. ? Why Joe? • Joe was dedicated and caring nursing professional • Trained initially through Huddersfield Royal Infirmary and then deciding to complete an Hons 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 ?
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. • The failure to provide appropriate care places more than 22, 000 mothers a year at risk, with many unnecessary and potentially unlawful deaths. • Many Mental Health patient suicides and homicides are avoidable and potentially a result of unlawful treatment and care. • 10% of Dads suffer from postnatal depression but the NHS provides no support
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.
What’s going wrong? § Care Standards § Joe’s Pathway to Despair § The NHS Response After Joe Died § NHS Internal Reviews § The Independent Investigation § Coroners Inquest
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 highlights suicide 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 CG 90 Depression in Adults (2007) revised (2009) • NICE Guidelines CG 45 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.
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 • 22 Feb 2010 Breast Feeding problems – 1 st Hospital stay with positive results • 10 Mar 2010 Breast Feeding problems – 2 nd 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
Joe’s Pathway to Despair … 2 of 3 • 22 nd 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. • 23 rd 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 • 27 th 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!
Joe’s Pathway to Despair … 3 of 3 • 29 th 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. • 30 th April 2010 - Joanne walks on railway tracks, throwing herself under a train • 4 th May 2010 - On first day back at 9: 05 am 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.
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 Visitor: - Patients husband has family support so do not contact for 6 to 8 weeks - Support for Crisis Team staff and HV staff affected to be organised through normal channels • Mental Health Crisis Team Director and Manager , in a meeting held in the patients home with her husband GP friend, prior to investigating Joe’s death: “Guidelines are just guidelines we don’t have to follow guidelines” “ These things just happen”
NHS Internal Reviews Huddersfield Royal Infirmary - Maternity Care • The report fails to address key issues and aspects of the treatment, failed to interview key persons who treated the patient, in particular the 2 Breast Feeding Midwives who were encouraging a course of treatment when it was suspected she was showing signs and symptoms of Post Natal Depression. • The conclusions are fundamentally flawed, stating “we could not have known she was suffering from postnatal depression”, contrary to the written evidence in the medical records and statements of the midwives. Kirklees Community Healthcare – Health Visitor Maternity Services • The report was written on the 4 th May as an ‘Internal Review’ without reference to any specific terms of reference or other guidance. • The report fails to cover key issues (Joe’s previous history and treatment for PND, the failure to perform 5 clinical risk assessments, etc. ) making NO conclusions. South West Yorkshire Partnership Foundation Trust – Mental Health Services • Finds “internal processes” were followed and concludes whilst key things need to be improved nothing that was wrong contributed to the death. • The report fails to cover key issues and aspects of the treatment and care; concentrates on “internal policies and process” failing to cover independent investigations, legislation, etc; report emphasises “the reliance on the family”
The Independent Investigation Due to time constraints it was agreed: • The investigation team was only able to review the clinical documentation and policy documents without the benefit of investigators interviewing staff • As the Primary Care Trust were unable to facilitate the input into the investigation of specialists in Midwifery or Health Visiting, if there was a need these areas would be reviewed and investigated at a later stage. The Independent Investigation concludes: “From the documentation there is evidence that Joanne Bingley should have been hospitalised on the 27 th of April 2010 at least 3 days before her death. Further if she had been so treated would probably have made a full recovery” The Results: 21 recommendations and actions for change including: • Specialist Perinatal Psychiatric Resource • New strategies and policies compliant to care quality standards • New and improved systems, processes and safe systems of working • Provision of written information to patients and carers • Mandatory contractual care standards and compliance measures
Coroners Inquest The criminal standard of proof beyond reasonable doubt, represents the evidential hurdle or threshold that the coroner had to consider for suicide or unlawful killing. He resolved to return a narrative verdict, and his 21 statements of fact include: • A personal and family history of mental health problems as well as significant adverse life events befalling her in the last 5 years of her life. • By the 22 nd April her condition was such that she was referred to the Mental Health Services who responded promptly. At and around this time she was expressing suicidal ideation, low mood, anxiety and a poor sleep pattern. • At a meeting it was determined she could be treated at home. I have found as fact that no discussion of otherapeutic options took place………informed consent has not been obtained. (one of many unlawful acts) • Independent medical care advice commissioned from Dr Oates and Mr Ketteringham. I have accepted their view that the possibility of admission should have been part of the initial treatment care plan and discussed with the patient and her husband as a treatment option if she either became worse or did not improve. • I find as fact that her health fluctuated and did not improve. • It is also their evidence that on the 27 April, if not before, there was clinical indication to be admitted to a Mother and Baby Unit. • It would follow from this opinion that if admission had taken place Joanne Bingley in all probability would not have died on the date or in the manner that she did.
All Babies Count: Spotlight on Perinatal Mental Health § § § § § Spotlight on Perinatal Mental Health Mother and Baby Units NHS Constitution - Informed Consent The Patients Association Report 2011 Equitable Access to Universal Services Training and Education NHS Constitution – Learning by Experience Independent Surveys Maternity Services Unlawful Mental Health Services Unlawful Failing and Unlawful NHS Trusts The Whole Family Approach The Consequences of Failure The True Costs of Failure Mums and Dads at Risk Best Practice Treatment 3 rd Sector Services
Spotlight on Perinatal Mental Health The NSPCC report, part of the Prevention in Mind series, is a thorough and provocative review of the state of UK Maternal Mental Health services, coauthored with the Maternal Mental Health Alliance. It highlights - • The NHS failure to comply with Care Quality Standards and failure to deliver on previous government promises. • The current “postcode lottery” and “inequitable access” to Maternal Mental Health care services results in over 35, 000 mums suffering in silence every year. • The “avoidable deaths” of many mums and the dads left picking up the pieces with little to no support when a family life’s are torn apart. • The annual economic costs of mental illness in England have been estimated at £ 105. 2 bn • The costs of just a single “avoidable death”, such as Joanne Bingley, far out ways the economic and social costs of not providing the necessary Maternal Mental Health care services mums and dads need.
Mother and Baby Units According to the NHS publication “Birth to Five Years” all mothers suffering from very severe postnatal depression or puerperal psychosis should be offered treatment in a mother and baby unit, unless there is a valid clinical reason for not doing so. In the tragic case of Joann (Joe) Bingley - At one point Joe asked the crisis team nurse "please take me with you“. At the inquest the Coroner heard how her requests were ignored and when Joe walked out of the treatment session the nurse failed to follow-up with any questions as to Joe’s mental state. Whilst sat in her care ready to leave, when told that Joe had disappeared and left the property, she told Joe’s husband Chris to contact the police if Joe did not return and then drove away. The Coroner issued a "Statement of facts" that accepted the Independent Investigation conclusions. He agreed with them that the option of admission to a Mother and Baby Unit should have been discussed with Joe and Chris as part of agreeing the treatment option. He stated as fact that if Joe had been informed about this option in all probability she would have asked for and accepted this treatment and she would still be alive today. The coroner stated that the failure to inform Joe of the NICE recommended treatment options was a failure to obtain informed consent……
NHS Constitution – Informed Consent On 19 January 2010 The Health Act 2009 came into force placing a statutory duty on NHS bodies, primary care services, and 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. • This is especially important when a person has severe depression. • 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. • There is a need to raise awareness of Mother and Baby Units such as the one in Leeds so that mums are informed about this specialist service that is available. • The lack of beds and the difficulty patients have in accessing such treatment is no doubt a significant factor in the failure to reduce the incidence of mothers dying,
The Patients Association (2011) The Patients Association investigation into Primary Care Trusts (PCT) commissioning of perinatal mental health services found that: • 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 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. 4 Children reported in 2012 how 35, 000 women (50% of those who suffer from postnatal depression) are left suffering in silence many too afraid to seek help unsure of the treatment they will receive.
Equitable Access to Universal Services This latest report from the NSPCC confirms that to end the current postcode lottery of care there is an urgent need to ensure ALL MENTAL HEALTH TRUSTS CONFORM TO NICE CARE QUALITY STANDARDS, • • At the time of Joe’s death the Kirklees Primary Care Trust (PCT) had failed to commission specialist perinatal mental health services in accordance with NHS guidelines. The Patients Association report in March 2011 into Primary Care Trusts found this was the case across more than 50% of the country with mental health trusts failing to follow care quality standards. • Those treating my wife were not trained, qualified or experienced specialists and failed to provide the recommended treatment in accordance to NHS Service Frameworks and NICE Care Quality Standards. • The NHS estimate the costs of outstanding negligence claims as a result of patient blunders and the NHS failure to follow care quality standards totals greater than 1/5 th of the annual NHS annual budget or over £ 17. 5 bn.
Training and Education The Mid-Staffordshire enquiry is just one of many “Independent Reports” raising issue that many NHS trusts are failing to comply with care quality standards, failing to adhere to professional standards of care and are operating unlawfully. Following Joe’s death the Strategic Health Authority reluctantly agreed to an Independent Investigation into her death. This resulted in 21 recommendations and actions to be implemented and concluded Joe’s was one of many “avoidable deaths”. In April 2012 the Care Quality Commission published their findings following a review of the Mental Health Trust that had treated Joe Bingley. What they identified was appalling: • Staff still not trained or qualified to provide the specialist perinatal mental health services • Planned training to be provided those unqualified and in-experienced in perinatal mental health • Where recommendations had been implemented many fell below care quality standards • The failure to implement several recommended actions that had been signed-off as complete.
NHS Constitution – Learning by Experience The NHS Constitution places legal duties on NHS trusts and their directors to provide services that comply with NICE care quality standards and that they implement the “Lessons Learned” from independent investigations. 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. The Care Quality Commission reported in April 2012 “Because the planned training in relation to perinatal mental health disorders is insufficient and is being delivered by trainers who lack experience in this area of work, there are risks that the Trust’s staff will not be sufficiently equipped to safely meet the needs of this specific service user group. ” The failure to apply “lessons learned” and to implement “learning by experience” along with the failure to adhere to care quality standards are grounds to claim unlawful death !
Independent Surveys Following the Patients Association Survey in 2011 many other independent surveys detail the poor and inadequate provision of perinatal mental health services and unlawful NHS Trusts in many areas: 2011 Confidential Enquiry into Maternal death • Mental illness still one of the highest causes of maternal death 2011 National Perinatal Mental Health Project Report • Women not receiving help in accordance with national care quality guidelines 2011 4 Children ‘Suffering in Silence’ : • 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. • 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. 2012 The Tax Payers Alliance: • Nearly 12, 000 fewer people would die each year if the NHS matched quality standards in Europe, this should be a wake-up call for politicians • The issue is not a matter of spending more money as the UK spends considerably more than many other European countries.
Maternity Services Unlawful Care Quality Commission: The CQC reported in November 2011 their inspection of 100 NHS trusts Maternity Services found: Ø 20% NHS Trusts providing Maternity Services in Breach of The Law Ø An "embedded culture" of poor care and unprofessional behaviour Ø “Catastrophic failings” by NHS staff to provide basic care to patients. Cynthia Bower, whilst Chief Executive of the Care Quality Commission, confirmed in writing - • The CQC does not have the power or authority to act upon complaints of unlawful treatment or gross negligence that have been raised in cases such as Joe’s. • That ultimate responsibility for the failure of Directors of or NHS Trusts rests with the Minister of State for Health.
Mental Health Services Unlawful The Patients Association: The Patients Association reported in March 2011 their investigation into commissioning of Perinatal Mental Health Services across 150 PCTs: Ø 78% of PCTs do not know the incidence of PND in their region Ø 55% of PCTS are failing to follow NICE guidance, are not providing written information on PND to mums who may be suffering Ø 44% of PCTs are failing to implement NICE guidance, are not part of a clinical network for perinatal mental health Ø 63% of PCTs do not follow the NHS National Service Framework, have no Specialist Perinatal Psychiatrist to lead PND services The result is over 50% of Mental Health Teams providing Perinatal Mental Health treatments are acting unlawfully. There are legal obligations to inform ‘Patients’ and ‘Carers’ of their rights as well as legal obligations to inform patients of their treatment options. The information should be in writing and include whether treatment follows clinical standards, what risks are involved in accepting each treatment option and the information must be made available before treatment begins.
Failing and Unlawful NHS Trusts Joanne (Joe) Bingley Case Study: NHS failure to recognise trends, to “learn lessons”, mistakes with similar issues and recommendations recurring across a large numbers of deaths and trusts: Ø Of 17 ‘Independent Investigations’ conducted by Yorkshire & Humber SHA over a 4 year period, 11 incidents (65%) involve similar treatment factors, recommendations and action plans as the Independent Investigation into Joe Bingley’s death National Media Reports: Mental Health Trusts failure to follow NHS policy, NICE Care Quality Standards and professional and clinical standards of care: Ø Avon and Wiltshire Mental Health Partnership Foundation Trust Ø Lincolnshire Partnership NHS Foundation Trust Ø South West Yorkshire Partnership Foundation Trust Legislation and Due Process: The NHS has and is failing to follow due legal process, to acknowledge and conduct investigations in accordance with the NHS Constitution and failing to report incidents per the Health and Safety Executive and Crown Prosecution Service guidelines.
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.
The Whole Family Approach The crucial role “carers” play, whether dads, partners, family members or friends, must be recognized by the NHS. Commissioners must ensure “carers” receive the support that they are legally entitled, as part of the initial treatment of sufferers. • 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 themselves at age 16 • I also had to learn of the increased risk she will suffer the same sever form of postnatal depression as her mum. • 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/
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: Ø The 2 train drivers off work needing treatment Ø The members of public, off work needing treatment Ø The 7 year old child waiting on the platform needing treatment Ø 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 !
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 (£ 2 m) and the economic costs of closing the Trans-Peninne train line for several hours (£ 20 m), hardly feels relevant when compared to the widespread human costs. Proper care would have cost: • 25 p for the JBMF information card for mums & dads (900, 000 *25 p = £ 176, 000 per year for all mums) • 5 p for the JBMF Severe Postnatal Depression checklist/leaflet (22, 000 @ 5 p = £ 1, 000 for all sufferers) • just £ 17, 000 for the 56 days Joe needed to live! £ 318 per day for treatment in a Mother and Baby Unit Bed The sad fact is there approximately 10 to 15 such “avoidable deaths” every year costing the economy in excess of £ 300 m…. not including costs of negligence claims!
Mums and Dads at Risk Over 22, 000 mothers are placed at risk every year • Statistics on postnatal depression show that: 1 in 2 mums suffer Baby Blues 15% Mums suffer Postnatal Depression 3% suffer Severe Postnatal Depression 1 in 500 suffer Puerperal Psychosis Based upon 2009 ONS Birth Rates Nationally Yorkshire 353, 124 33, 179 105, 937 9, 954 21, 187 1, 991 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
Best Practice Treatment 2/3 rds of mums suffer from some effects of depression during or after pregnancy Peurperal Pscyhosis 1, 412 1 in 500 Mums per annum Specialist Services Severe Postnatal Depression 21, 187 3% of Mums per annum Mild to Moderate Postnatal Depression 10% to 15% of Mums The Baby Blues 50% of Mums Mother & Baby Units Specialist Perinatal Psychiatrists Integrated Care Networks 84, 750 per annum 353, 124 per annum Numbers based on 706, 248 live births in 2009 and the agreed rates of occurence NHS (Examples – Nottingham, Southampton) Specialist Perinatal Psychiatric Teams GP’s Midwives, Health Visitors, Care Workers 3 rd 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
3 rd Sector Services Outside of the NHS are a plethora of support groups and projects run by 3 rd sector organisations and self-help providers. These provide support and services for mums, fathers and families coping with and surviving maternal mental illness: 3 rd Sector Organisations • Many charities (Family Action, APNI, JBMF, Lighthouse, etc. ) provide information and support services and conduct local projects. • But with no interface into the NHS commissioning process these projects can not provide a national service and struggle to access long-term funding. Local Support Groups • Over 300 known local groups providing support • But with little support, supervision or co-ordination, often standing alone with no interface into any of the “Integrated Care Networks” that should be provided • Evaluations of the services provided by local support groups have shown them to provide an accessible and cost effective service. The Community Health Champions Network : • A national support network of over 17, 000 “Community Volunteer Champions” • Has been evaluated to show an estimated ROI of c£ 112 for every £ 1 invested. • “Investment” of this type in Maternal Mental Health would improve outcomes.
The Joanne (Joe) Bingley Memorial Foundation § Founders Statement § Our Mission § How we help
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”
JBMF - Our Mission “We are here to promote parental mental well being and to give people help to know the true joy of a baby in their lives” The Vision: • An integrated national network of support and advice services • A centre of excellence for Patient Centred Support • Recognised experts in maternal mental health and patient support The Plan: • Every expecting family to receive z-card “Why am I not happy? ” • Every dad, family and carer supporting someone suffering postnatal illness has a checklist on treatment options and where to get support • Health and care professionals have access to the best training and resources • Sufferers of Maternal Mental Illness and Carers have a voice recognised by parliament that is acted upon • Mechanisms and processes are improved so that Managers and Directors are held accountable for any failure to their patients.
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.
Maternal Mental Health Alliance § MMHA - Our Mission § MMHA – Who we Are § Theory of Change § Key Workstreams and Milestones
MMHA - Our Mission The Maternal Mental Health Alliance (MMHA) is a coalition of UK organisations committed to improving the mental health and wellbeing of women and their children in pregnancy and the first postnatal year. The Vision: • ‘To improve the lives of mothers and their infants’ The Plan: • Awareness - to raise awareness of maternal mental health problems and the potential effect on the physical and mental health of the foetus/child. • Education - to increase knowledge and provide training in Maternal Mental Health for health and social work professionals • Action - to campaign for improved and consistent Maternal Mental Health care for all women as set out in NICE guidance This acknowledges the extensive evidence that investing in mental health at an early stage can have a dramatic impact on long-term outcomes for mothers, fathers, children, families and society.
MMHA – Who We Are The Maternal Mental Health Alliance (MMHA) is a coalition of organisations: Member Organisations Action for Puerperal Psychosis Netmums Perinatal arm of the RCPsych Chair of Institute of Health Visitors Angela Harrison Charitable Trust NSPCC Best Beginnings Parents 1 st Bipolar UK Patients Association Bipolar Scotland Perinatal Mental Health Forum Scot Break the silence - PNI Perinatal Psychological Society British Psychological Society Postpartum Support International Centre for Mental Health UK Marcé Society CYPMH Coalition Rethink Mental Health Family Action Royal College of GPs Fatherhood Institute Royal College of Midwives 4 children Royal College of Nursing Homestart Royal College of Psychiatrists Joanne Bingley Memorial Foundation Tommy’s the Baby Charity Marce Society UKIMS Mental Health Foundation Young Minds MIND
Theory of Change
Key Workstreams & Milestones Action 2013 2014 National User Group Alliance 2015 Education 2017 2018 Business As Usual Gap Analysis Applications & Tools – media based, open access, self help app’s, self referral, map of services, etc. User Needs & Support Groups – Coordination, Education, Information, Supervision, “Integrated Care Networks” Services Gaps User Forums – Patients, Carers, etc. MMH Specialist Commissioning Group GP Commissioning Groups National, Compliant “Integrated Care Networks” Gap Analysis Specialist (Accredited) Resources – Health Care Professionals and Volunteer Support Best Practice vs Education & Training – Accreditation, Evaluation, CPD, etc. Current State Feasibility Study Regional Workshops Seminars & Conferences MMHA Website Awarenes 2016 Applications & Tools – media based, open access, self help app’s, self referral, map of services, etc. Parliamentary Parliament Commission Launch Parliamentary Support Annual Review Annual Review MMHA National Campaigns MMHA Formed MMHA Member Accreditation National Awareness Campaigns “Integrated Care Networks” MMHA Core Resources / Funds Feasibility Business Case Implementation & Delivery Review
Finally Charity Registration Number: 1141638
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
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
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