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
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
Why I am here ……
Why am I doing this….
The People:
The Reasons:
• Daksha Emson … 10 years on Mums still
die avoidable and unnecessary deaths
(MP, Secretary for Health empty promises)
• Emily Jane Bingley could be another
- Avoidable and Unnecessary Death ?
• “Guidelines are just guidelines we don’t
have to follow guidelines” … “These
things just happen” ….
(NHS prior to investigating Joe’s Death)
• NHS failure to follow care quality
standards, NHS Policies, National
Service Frameworks and UK law
• NHS and Dept Health failure to properly
investigate and to follow due process
• The lack of justice and accountability
• Other Mums, Mental Health Patients
and the General Public at risk
• Hundreds of potentially unlawful
deaths and unnecessary suffering
• I ask myself …..Who else cares?
• I must protect my daughter’s life
….. 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 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 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.
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 and 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 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 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 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.
All Babies Count: Spotlight on
Perinatal Mental Health
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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
3rd 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
£105.2bn
• 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.
4Children 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
1/5th of the annual NHS annual budget or over £17.5bn .
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 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 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:
 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.
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.
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 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:
 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 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 (£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:
•
25p for the JBMF information card for mums & dads
(900,000 *25p = £176,000 per year for all mums)
•
5p for the JBMF Severe Postnatal Depression checklist/leaflet
(22,000 @ 5p = £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 are approximately 10 to 15 such “avoidable deaths” every year
costing the economy in excess of £300m…. 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
2/3rds 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
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
3rd Sector Services
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 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
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
st
Joanne Bingley Memorial Foundation Tommy’s the Baby Charity
Marce Society
UKIMS
Mental Health Foundation
Young Minds
MIND
Theory of Change
Key Workstreams & Milestones
2013
2014
2015
2018
Business
As Usual
Action
Group Alliance
GP Commissioning Groups
Education
2017
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
National User User Forums – Patients, Carers, etc.
MMH Specialist Commissioning Group
National, Compliant “Integrated Care Networks”
Gap Analysis Specialist (Accredited) Resources – Health Care Professionals and Volunteer Support
Best Practice vs
Current State Education & Training – Accreditation, Evaluation, CPD, etc.
Regional
Workshops
Feasibility
Study
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
Annual
Review
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