Joanne’s Story: A Reason to Act

Nottingham Learning DayDelegates Pack

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

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 out …….. 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

Chris’ Quest for the Truth Why? Personal Investigations Results of Previous Investigations History of a Failing Service Unlawful and Negligent Deaths NHS Internal Reviews The Independent Investigation Coroners Inquest

WHY ?How could such a wonderful person die?

• When my wife died I was beside myself with grief and as many people witnessed was close to collapse.

• But I had an anger burning away inside that would not let me rest as I had so many questions?

• Prior to her illness Joe was a happy, bubbly person that others turned to with their problems, as testified by the outstanding tributes that were paid to her at her funeral.

• The funeral was attended by over 400 guests many of them consultants, surgeons, doctors and nurses who had worked with Joe through her 20 year nursing career at Huddersfield Royal Infirmary.

• All of them were asking the same question as I had been asking since her suicide;

“How could such a wonderful, caring, sensitive and dedicated nursing professional have been allowed to descend into such a desperate state of Post Natal Depression (PND)?”

Personal Investigations

After her funeral I started to investigate the surroundings and issues associated with Post Natal Depression (PND) and the severe form my wife was being treated for.

I had serious doubts as to the care and treatment given my wife prior to her death. I performed a “Route Cause Analysis” and prepared my evidence consisting of:

• Timeline of Key Events – a detailed and cross referenced analysis of medical records and personal and family recollections of events

• Relevant Health & Safety Guidelines (NICE, NHS and Other Publications) - highlighting the perceived breaches in guidelines

• Analysis of the Incidence of Postnatal Depression and Gaps in Service Provision

• A data gathering exercise using the internet on Serious Untoward Incidents and the Independent Investigations performed within the Yorkshire & Humber Strategic Health Authority area.

• FOI request of NHS Policies, Strategy, Contract and Performance documentation

My research identified significant failings by the Strategic Health Authority and Mental Health Trusts and this data was used this to force an Independent Investigation into Joanne Bingley’s treatment and death.

Results of Previous Investigations

19 Previous Independent Investigations conducted by the Yorkshire and Humber Strategic Health Authority are available to the public. These show recurring failures in the treatment and care of patients and Carers consistent with Joanne Bingley.

Independent Investigations – Failings in Treatment and Care, Where Previous Action Was Recommended JB Total % of 19 Ranking Poor and inadequate risk assessments - clinical records should evidence a robust approach 1 7 35% 1 Poor and inadequate involvement of the "family" and external agencies 1 5 25% 2 Poor and inadequate "quality documentation" - not just a tick the box exercise 1 5 25% 3 Internal reviews - neither timely, thorough or follow best practice 1 5 25% 4 Inadequate staff training and experience 1 4 20% 5 Poor and inadequate involvement and support for Carers 1 3 15% 6 Poor and inadequate skills sharing 1 3 15% 7 Poor and inadequate sharing of information 1 3 15% 8 No clear definition of clinical and managerial roles 1 3 15% 9 No compliance checks to national standards 1 2 10% 10 Safegaurding patients 1 2 10% 11 Poor and inadequate service delivery 1 2 10% 12 CPA paperwork to ensure transparency and robustness of CPA audit trail. 1 2 10% 13

Conclusions & Recommendations of previous investigations 13

History of A Failing Service2003 to 2006 - Over this 4 year period analysis of Independent Investigations shows a recurring trend of similar issues with failings in treatment and recommendations recurring across 11 of the 17 incidents (65%), relevant to the death of Joe Bingley.

2007 to 2011 - SWYPFT were never commissioned to provide perinatal mental health services and therefore had neither the systems, training, experience or specialist qualified staff required. SWYPFT and the SHA have knowingly operated in breach of NHS Service Frameworks and NICE guidelines.

2008 - The Kirklees Joint Mental Health Commissioning Strategy details ‘Gaps in Services’ with plans to implement changes by the end of 2009, relevant to Joe Bingley.

2009 - South & West Yorkshire Mental Health Trust postpone planned assessment of compliance to NHS Litigation Authority Risk Management Standards as they were not ready. Previously had been assessed as have only documenting process and not having implemented them.

After double the normal mental health patient deaths an ‘Independent Review’ of Mental Health Services found no issues in service provision. The Strategic Health Authority rely on the SWYPFT management to take the lead despite previous investigations fault the quality of Internal Reviews.

“The Board declares that all national core standards have been met over the period ……………(after application of thresholds)”

2009/10 - South & West Yorkshire Partnership Foundation Trust NICE Compliance End Of Year Report

20 NICE guidelines listed as “partially compliant“ out of a total of only 42 which are monitored …… i.e. ‘non-compliant’ to 48% of care standards

2009 – Directors of the South & West Yorkshire Partnership Foundation Trust and Yorkshire and Humber Strategic Health Authority sign-off declarations of compliance to care quality standards to achieve elite Foundation Trust status………avg. pay that year £250,000 in salary, benefits, pensions and bonus.

Unlawful and Negligent Deaths

168 potentially unlawful or negligent deaths between 2003 and 2009 as a result of the failure by Mental Health Trusts in Yorkshire and The Humber to comply to legislation, Care Quality Standards and to follow safe systems of work.

• Of the 21 recommendations and actions from JB Independent Investigation 13 had been flagged previously as issues with action plans supposed to eliminate the risks.

• Between 2003 and 2006 Independent Investigations show 12 out of 19 homicides (i.e. 66%) raise issues in treatment similar to those by the death of Joanne Bingley.

• In the 250 Mental Health Suicides between 2003 and 2009 this would result in potentially 168 unlawful deaths, if the same ‘unlawful’ or ‘gross negligent’ treatment occurred, due to a failure to follow legislation, care quality standards and safe systems of work.

• Reports from “Multi-agency Workshops” and Risk Assessment on NICE Compliance detail that in 2007 booklets and information leaflets were available for patients and carers but by 2009 no written information was being provided, but state “information available on the internal NHS Trust intranet”.

The failure to provide information is a failure to follow care standards and safe systems of work.…. it is also a failure to obtain ‘informed consent’ in breach of General Medical Council guidelines, the Carers Acts and NHS Choices guidelines and a failure to comply with the NHS Constitution (Health Act 2009).

NHS Internal ReviewsHuddersfield 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 4th 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 27th 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 InquestThe 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 22nd 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 other therapeutic 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.

What’s going wrong? Care Standards Joe’s Pathway to Despair Failings by Maternity Services Maternity Services Unlawful Failings my Mental Health Services Mental Health Services Unlawful Health and Safety Crown Prosecution Service Failing and Unlawful NHS Trusts The NHS Constitution Who is responsible ? Consequences of Failure

Care StandardsPostnatal 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 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.

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 – 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

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!

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 the patients mother is 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 are 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.

Failings by Maternity Services

Coroners Statements of Fact:

• 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.

(i.e. Bells Palsy, CBT for Post Traumatic Stress, Postnatal Depression)

• Protracted and difficult labour extending over 4 days.

• 2 admissions to the Birth Unit in February and March 2010

Clinical Records:

• 2008 Health Visitors advise treatment for depression following miscarriage

• HV failure to perform any of the ante-natal or postnatal risk assessments

• Midwifes suspicions of suffering postnatal depression not acted upon

• Failure to perform any risk assessments, make any referral, or inform patient of their suspicions or the risks prior to treating for breast feeding problems.

• 22 missed opportunities to enquire into mental health prior to GP diagnosis

Maternity Services Unlawful

Care Quality Commission:

The CQC reported in November 2010 their inspection of 100 NHS trusts Maternity Services found:

20% NHS Trusts providing Maternity Services 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.

 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.

Failings by Mental Health Services

Coroners Statements of Fact:

• At a meeting it was determined Joe could be treated at home. I have found as fact that no discussion of other therapeutic options took place.

• Informed consent has not been obtained in accordance with the General Medical Council's guidelines (in breach NHS Constitution, Health Act 2009).

 • I have accepted their (independent experts) 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.

• It would follow from this opinion that if admission had taken place Joanne Bingley in all probability would not have died on the date that she did or in the manner that she did.

Independent Investigation:

• 21 recommendations and actions for improvements yet to be implemented

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:

78% of PCTs do not know the incidence of PND in their region

55% of PCTS are failing to follow NICE guidance, are not providing written information on PND to mums who may be suffering

44% of PCTs are failing to implement NICE guidance, are not part of a clinical network for perinatal mental health

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.

Health and Safety ExecutiveHealth and Safety At Work Act

• The reporting injuries, diseases and dangerous occurrences in health and social care: Guidance for employers, states that suicides are not considered ‘accidents’ and are not RIDDOR reportable.

• Deaths are reportable if:

It is suspected or known those treating the patient ….were aware the patient had a history ….failed to take this into account.

It is suspected or known treatment was…. not following a safe system of work

It is suspected or known there were serious management failures

 “All of which apply in the case of the death of Joanne (Joe) Bingley”

Crown Prosecution Service

CPS GuidelinesCases of murder or suspected murder, including manslaughter whether Unlawful, Gross Negligent, Medical or Corporate, must be notified to CPS as soon as practicable.

If any of the following characteristics are present the case should be dealt with by Complex Casework Units (CCU): 

• High profile / multi victim / multi defendant murders; 

• Cases involving complicated Public Interest Immunity (PII) issues; 

• Sensitive, serious or complex cases of major media interest e.g. allegations involving organisations with high public profile; 

• Cases requiring consideration of gross negligence manslaughter and any case involving a fatality in which the investigation is being conducted in accordance with the "Deaths at Work" protocol

• Medical manslaughter cases must be referred to Special Crime Division. 

   “All of which apply in the case of the death of Joanne (Joe)

Bingley”

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:

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:

Avon and Wiltshire Mental Health Partnership Foundation Trust Lincolnshire Partnership NHS Foundation Trust 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 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.

Who is Responsible ?Yorkshire and Humber Strategic Health Authority:Bill McCarthy, Chief Executive, in an email to Chris Bingley states:

“Myself and the board of directors are responsible and make the final decisions….”

The Care Quality Commission:Cynthia Bower, Chief Executive, in a letter to Chris Bingley states:

“…. ultimate responsibility rests with the Secretary of State for Health.”

Individuals and Directors Duty of Care:Legislation states directors are responsible for maintaining robust and defensible risk management systems.

Failure to follow safe systems of work may result in claims of unlawful death, gross negligent or medical manslaughter… only the worse are prosecuted !

The NHS:

Estimates an outstanding £17.5bn in negligence claims as a result of patient blunders and the failure to follow care quality standards.

Consequences of FailureThe True Costs 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 needing treatment

And all the other people who had to deal with the incident • All for not spending £1

50p for z-card with information and advice for mums & dads

20p for Severe Postnatal Depression checklist and information leaflet

Patients Suffering - The Big Picture

A National Scandal Mums and Dads at Risk Best Practice Treatment 3rd Sector Services Independent Surveys Key Issues & Potential Solutions

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

Mums and Dads at RiskOver 22,000 mothers are placed at risk every year

• Statistics on postnatal depression show that:Based upon 2009 ONS

Birth Rates Nationally

Yorkshire1 in 2 mums suffer Baby Blues 353,12433,17915% Mums suffer Postnatal Depression 105,937 9,9543% suffer Severe Postnatal Depression 21,187 1,9911 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

Best Practice Treatment

The Baby Blues50% of Mums

Severe Postnatal Depression3% of Mums

Mild to ModeratePostnatal Depression10% to 15% of Mums

353,124 per annum

84,750 per annum

21,187 per annum

1,412 per annum

2/3rds of mums suffer from some effects of depression during or after pregnancy

Specialist Services Mother & Baby UnitsSpecialist Perinatal Psychiatrists

Integrated Care Networks

NHS (Examples – Nottingham, Southampton)Specialist Perinatal Psychiatric TeamsGP’sMidwives, Health Visitors, Care Workers

3rd Sector Support (Examples)Family Action - support program & befriendersNet Mums - online CBT & chat roomsHouse of Light - call-line and drop in groupsJoanne Bingley Memorial Foundation- information, awareness, training & education

Peurperal Pscyhosis1 in 500 Mums

Numbers based on 706,248 live births in 2009 and the agreed rates of occurence

Outside of the NHS are a plethora of support groups and projects run by 3rd sector organisations and self-help providers. These provide support and services for mums, fathers and families coping with and surviving maternal mental illness:

3rd 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 Chanpions 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.

3rd Sector Services

Following the Patients Association Survey in 2011 many other independent surveys detail the poor and inadequate provision of maternal mental health services and the NHS failure to follow care quality standards:

2011 Confidential Enquiry into Maternal deaths• 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 4Children ‘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 Care Quality Commission:• Non-specialist trained and inexperienced trainers are being

recruited to provide specialist perinatal psychiatric training to Mental Health Crisis Teams

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

Independent Surveys

Here are some of the key issues and potential solutions:

KEY ISSUES POTENTIAL SOLUTIONSAWARENESS•NHS failure to commission services•NHS failure to comply with Care guidelines•NHS failure to comply with Legislation•100’s of local support groups with no voice•35,000 mums suffering in silence•Mental illness cause of “avoidable deaths”

Guidelines are not just guidelines….- Action to enforce compliance with legislation and care quality standards …. Reduce the £17bn outstanding negligence claims - Accountability - unlawful treatment is punished- A national organisation to speak on their behalf- A national campaign to raise awareness of issues

EDUCATION•Shortage of perinatal psychiatric services•Lack of qualified, experienced specialists•Non-qualified teaching the non-specialist•50,000 + Health Care Professionals •20,000 + volunteers

- Implementation of “integrated care networks” to free specialist resource to concentrate on the most urgent, high risk cases.- Accredited trainers, accredited training providers- Mandatory bi-annual training, accreditation, supervision, CPD- Bi-annual training, accreditation and supervision

ACTION•100’s of support groups, many unsupervised and not part of any supported Care Networks•Department of Health and the NHS•Parliament•Accountability

- Provide a standard tools-set for self –referral and sign-posting to services, plus education, training and supervision for volunteers- Equitable access to “compliant”, quality care services- Deliver on “promises” made, with action not just words.- Unlawful treatment is punished

Key Issues and Potential Solutions

The Joanne (Joe) Bingley Memorial Foundation

Founders Statement Our Mission How we help

JBMF – Founders Statement

“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”

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.

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 helpHow 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

• We provide training/education workshops for support &care workers

• 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 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

Maternal Mental Health Alliance MMHA - Our Mission MMHA – Who we Are Why MMHA Makes a Difference 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.

Maternal Mental Health Alliance

A National Umbrella Organisation with Direct Links to Parliament:

There are many charities, 3rd sector support groups as well as many patient organisations who are active in the area of Maternal Mental Health.

• We are dismayed by the failure of the NHS to commission appropriate Perinatal Mental Health Services in accordance with Care Quality Standards and NICE guidelines, and we have decided to form the ‘Maternal Mental Health Alliance’

• An umbrella organisation with the support of all the Royal Colleges, The Patients Association, Net Mums, Family Action, 4 Children, APNI, Marce Society and a variety of other member organisations.

• We intend to campaign for improvements in Maternal Mental Health Care,

• We already have the support of a number of MPs including Barry Sheerman, Chairman of Policy Connect, which amongst other things provides a health and policy advisory service for parliament.

The intent:

For sufferers and carers, Charity Organisations, Maternal Mental Health Care Professionals to have a single voice that is listened to and acted upon

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 1st

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

4children 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

Why MMHA makes a difference

The Maternal Mental Health Alliance provides:

• Top down and Bottom Up access to and influence of key stakeholders:

• A joined-up, cohesive approach and a unified voice for member organisations

• A conduit for patient groups and support networks to make informed choices on their care needs and requirements, and put these to service commissioners.

• An educated and experienced forum who understand the issues, the problems and can provide appropriate advocacy and effective solutions,

• Co-ordinated activity to raise issues and problems, and to deliver solutions

Top Down Bottom Up

Parliament Public Awareness & Support

Department of Health The Patients Associations, NSPCC, etc.

NHS Commissioners Patient Forums, User Groups, Professional Networks

Theory of Change

Key Workstreams & Milestones

2013 2014 2015 2016 2017 BusinessAs Usual

2018

Act

ion

Aw

aren

esE

duc

atio

n

MMHAFormed

Feasibility Business Case Implementation & Delivery Review

MMHA Member Accreditation

MMHA Core Resources / Funds

Applications & Tools – media based, open access, self help app’s, self referral, map of services, etc.

ParliamentLaunch Parliamentary Support

Gap AnalysisBest Practice vs

Current State Education & Training – Accreditation, Evaluation, CPD, etc.

Applications & Tools – media based, open access, self help app’s, self referral, map of services, etc.Gap AnalysisUser Needs & Services Gaps

MMH Specialist Commissioning Group

National User Group Alliance

Support Groups – Coordination, Education, Information, Supervision, “Integrated Care Networks”

User Forums – Patients, Carers, etc.

GP Commissioning Groups

Specialist (Accredited) Resources – Health Care Professionals and Volunteer Support

National, Compliant “Integrated Care Networks”

MMHA National Campaigns

AnnualReview

AnnualReview

AnnualReview

AnnualReview

AnnualReview

Parliamentary Commission

National Awareness Campaigns “Integrated Care Networks”

Feasibility Study

MMHAWebsite

Regional Workshops

Seminars & Conferences

Finally

Charity Registration Number: 1141638

Why am I doing this….

The Reasons:

• Emily Jane Bingley could be another - Avoidable and Unnecessary Death ?

• NHS failure to follow care quality standards, NHS Policies, National Service Frameworks and UK law

• The lack of justice and accountability

• Hundreds of potentially unlawful deaths and unnecessary suffering

• I must protect my daughter’s life….. when she has children

The People:

• Daksha Emson … 10 years on Mums still die avoidable and unnecessary deaths

(MP, Secretary for Health empty promises)

• “Guidelines are just guidelines we don’t have to follow guidelines” … “These things just happen” ….

(NHS prior to investigating Joe’s Death)

• NHS and Dept Health failure to properly investigate and follow due process

• Other Mums, Mental Health Patients and the General Public at risk

• I ask myself how much do I have to give …. and who else cares?

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

Why are you here …… ?