Conception to Age 2 1001 Critical Days for

Conception to Age 2 1001 Critical Days for #Building. Great. Britons aka Perinatal Mental Health : The Key to unlocking the Inter-generational Impacts of Mental Health Presented by Chris Bingley Charity Registration Number: 1141638

Why I am here …. • Joe was a dedicated and caring nursing professional • In 20 years working at Huddersfield Royal Infirmary she enjoyed caring and treating those who were ill but also cherished her time mentoring and supporting others • Whilst there is a stepped change underway, back to the core values of “caring” and “putting the patient first” we all know there are constraints and funding issues. • NHS services do not have the capacity or capability required …. . It must prioritise what it can do! • Services operate with only “partial compliance” to NICE Care Standards • The 3 rd Sector, Family and Mental Health Services must work together to create the Integrated Care Networks required to fill the gaps in mental health care, “provide support for those suffering in silence” and “eliminate the unnecessary suffering” and “prevent the avoidable deaths” that devastate the whole family.

Perinatal Mental Health The Scale of the Problem in the UK Gaps in the Provision of Perinatal Mental Health Services 97% Of mums WILL NOT receive the treatment necessary to make a full recovery. This impacts adversely on childhood development across the generation’s. 86% of mums deaths from suicide are avoidable Every suicide costs the NHS approx. £ 1. 5 m to investigate and report on (in legal fees and admin) 42% Of mums first turn to their husband or partner when they talk about how they feel…. . Yet Dads are not included in Care Standards and PNMH guidelines! 2/3 rds RULE OF 3’s Of the known Economic Costs of failing to treat perinatal mental illness result from the intergenerational impact on the baby and child < 3% of Health and Well Being Boards have a strategy for providing perinatal mental health services < 3% of mums receive treatment to a full recovery < 1 in 3 (only 30%) of mums first talk to a health professional £ 8. 1 bn Costs The known economic costs of each annual cohort of mums who DO NOT have access to the necessary services 30 X £ 280 m Costs Cost of providing the “specialist perinatal healthcare services” across the UK specified by NICE care standards and guidelines

The Scale of the Problem The Economic Cost Report into Perinatal Mental Health, published in Oct 2014 by the London School of Economics and commissioned by the Maternal Mental Health Alliance, describes in “The Scale of the Problem” : –of all cases of perinatal depression, only 40% are detected and diagnosed; –of those recognised, only 60% receive any form of treatment; –of those treated, only 40% are adequately treated; and – of those adequately treated in real world primary care settings, only 30% achieve full recovery from their depression. Only about 3% of all cases of perinatal depression end up achieving full recovery i. e. 97% of mums fail to receive the treatment necessary to make a full recovery.

The Joanne Bingley Case Study Joe (Joanne Bingley) was hospitalized twice at HRI with difficulties breastfeeding, and it was on the second stay in hospital when she did not want to leave and it was suspected she was suffering from postnatal depression. But Joe was never referred for assessment or to the specialist perinatal psychiatric services available. There was a family history of mental illness and postnatal depression and Joe had received treatment after suffering postnatal depression following a termination/miscarriage. Despite there being a 50% risk of Joe suffering postnatal depression following the birth of her child, none of the 5 ante-natal or postnatal risk assessments were completed. Even after Joe was diagnosed with severe postnatal depression and described how she wanted to end her life and that of her child, when the mental health crisis team that were called in by her GP to provide treatment, they never informed her or her husband of the specialist perinatal psychiatric services that should have been treating her and that were available at the time of her death just 10 miles from where they lived. At the Coroner’s Inquest in October 2011 he accepted as fact the findings of the eminent experts who had conducted and reported in September 2010 the Independent Investigation into Joe’s death and found that the clinical evidence was that Joe should have been hospitalised and least 3 days before she died and if this had occurred she would have been expected to make a full recovery…. . Hers was an “Avoidable Death”. The coroner also stated that the failure to discuss or disclose treatment options other than home care was a failure to obtain “Informed Consent” and that if Joe had received the hospital treatment she would never have died in the manner and at the time she did. Joe’s was one of the many “avoidable deaths” each year from perinatal mental illness.

Other Avoidable Deaths Nurse Joanne Bingley Died Apr 2010 lay in path of a train at Huddersfield, whilst being treated at home for very severe postnatal depression by a “Crisis Team” with no experience or training in perinatal mental health care who did not inform her of the “specialist mother and baby unit” 10 miles away with available beds. In 2011 the coroner recorded a verdict of suicide but agreed with an Independent Investigation that the probable cause of death was maltreatment but not until 2014 did NHS admit fault that Joe’s was an "avoidable death" Emma Caldywould - Died in 2011 Emma had been under the care of the local Mental Health ‘Crisis Team’ for months before she died. This was not specialist perinatal mental health care, but general ‘crisis’ team with no experience or training in perinatal mental health, not until 2014 did NHS admit fault that inappropriate treatment was the cause of her "avoidable death". Dr Elizabeth Kenton Died 2013 suffering postnatal depression after the birth of her second daughter, was missing for two weeks until her body was found by Nottingham Police, Coroner records an open verdict. Linzi Mannion’s Died 2013 an army wife who hanged herself whilst suffering from postnatal depression Coroner records an open verdict unable to prove “beyond reasonable doubt” the cause of death. Natasha Sultan - 2013 the mum from Hull who killed her five-week-old baby after three days and nights with no sleep a serious case review into found she should have been offered more support while suffering Postnatal Depression. Clair Turpin - Jan 2013 mother of new born twins, treated at home for very severe postnatal depression under the care of the Mental Health ‘Crisis Team’ she feared social services would take her babies from her and she jumped from the John Lewis car park in Sheffield. Coroner records a verdict of suicide but parents criticised lack of specialist care. Roseanne Hinchliffe - Dec 2013 whilst being treated at home for very severe postnatal depression left her home in Huddersfield jumped from cliffs at Whitby, in 2014 Coroner records an open verdict unable to prove “beyond reasonable doubt” the cause of death. NHS contest negligence claims.

NHS Negligence Claim Costs According to a recent study by the National Child Birth Trust, 97% of the new Health and well-being boards have failed to include any policy on Perinatal Mental Health in their “Strategic Needs Assessments”. The lack of a government policy, that is implemented nationally, continues to impoverish perinatal mental health in the UK and leads to ongoing tragic effects for women and their families with unidentified, improperly or un-treated maternal mental illness. Maternity Care Costs Specialist Maternal Mental Health Costs Total NHS Maternity Budget Cost of NHS Maternity Negligence Cost to NHS of every patient “Suicide” £ 2, 800 per woman £ 50 per woman £ 2. 6 bn £ 482 m (or 1/5 th of total budget) £ 1. 5 m (Legal fees and admin costs)

The impact on infant development The suffering of mums with PND has an adverse impact on the development of their children during the first “ 1001 critical days “. Behavioural problems, reduced learning ability, increased likelihood of depression prior to age 16 and a life-time of increased risks to mental illness all result from the exposure of the developing child to toxic stress Without the support from specialist services only “Educated Parents” have been shown to have significant success in overcoming and breaking this adverse intergenerational childdevelopment cycle.

The Emily Bingley Case Study (Part 1) On 30 th April 2010 “Mummy Joe” died when Emily she was just 10 weeks old. For 8 of her first 10 weeks of life Emily had suffered physical and emotional anxiety and distress. After being fed she would be constantly screaming and even when a lack of hind milk resulted in severe weight loss at 6 weeks, breastfeeding was still being encouraged despite Joe’s medical records describing her as “on the way to suffering postnatal depression” Whilst grieving and struggling to care for his already distressed daughter. ……following Joe’s traumatic death the Mental Health Crisis Team told Health Visitors and other services that her husband Chris was to be left alone for at least 6 to 8 weeks …………. . as after all he had the support of his 65 year old retired parents! The only contact during this period was the Mental Health Crisis Team sending out in the post a request to complete a Treatment Evaluation Feedback Form and then sending a reminder letter 2 weeks after Joe had died. When the Mental Health Crisis Team eventually contacted Chris their primary concern was to explain how they could have done nothing more to treat his wife prior to her death and how “these things just happen”. Their only offer of help was to provide the similar drug treatment that had failed his wife, to help Chris to cope with his grief and his emotional and mental distress. There was no offer to help with providing care for his daughter or any signposting to the services from such organisations as Home Start, SOBS or any of the other family or child services that were available. When in April 2012 Kirklees social services conducted a “Safeguarding Risk Assessment” they decided there were no signs of any issues or problems that caused concern and Chris was told they thought everything was FINE!

The Emily Bingley Case Study (Part 2) Chris was left alone with no NHS or Social Services support to discover on his own the increased risks to his daughters early years child-hood development and the potential impact on her long-term development. Emily is now 5 years old and started school full time in September 2014. Having been in nursery part-time since the age of 2 Emily is used to the routine and she is a happy, confident, caring, loving child. Her academic progress in the Early Years Foundation programme so far is exemplary. BUT the school headmistress has raised concerns and asked for help to get specialist advice as: Emily is showing signs of "Unusually strong Emotional Attachment to her female teachers" . . . not really a big surprise as she has always bonded strongly with her female nursery carers. Emily is showing signs of "Behavioural and Attachment Issues” with her grandparents . . . again no surprise as they have acted more as surrogate parents rather than just grandparents. The school has asked why there has been no early intervention and where can they find specialist help? For Emily its too late …. all we can do is watch and wait ?

The impact on infant development

The Impact on child development At no other point in their life’s will Mums have such intense contact with professional care services, they are there partners (Dads) inherently want to do the best that they can and need to be aware of the risks and the services available should they need help There is a significant body of evidence that mums with depression or anxiety have an adverse impact on the early development of their child which at least doubles the risks of: – disengagement at 3 mths equates to behavioural problems at 12 months – anti-social behavioural issues by the age of 2 – behavioural issues and depression during adolescence – depression prior to age 18 with recurrence by age 25 With anxiety just as prevalent as mild to moderate depression, early intervention is crucial both in terms of reducing any impact on child development and in reducing the duration and complexity of treatment required by those suffering the anxiety or depression.

Why are we ignoring PNMH and what can we do about it? Those responsible for the implementation of policy needs to address the key questions Why? has there been a failure to implement Specialist Perinatal Mental Health Care Services despite Parliamentary and Department of Health promises in 2003. Why? has there been a failure to implement “lessons learned” from Independent Investigations and Confidential Enquiries and a failure to implement and follow Care Standards. Why? are Dads and “Partners” not being recognised as Carers even though “Home Care” is the primary treatment offered by Mental Health Crisis Teams and they are the person most mums turn to for support What? are we going to do to address the implications and costs to society and the economy: • • • Mums - unnecessary “Suffering in Silence” and “Avoidable Deaths” Dads – “Caring for Partners” and themselves “suffering from PND” with little or no support Early Years Child Development – dealing with risks and issues in the 1001 Critical Days The breakdown of Family Finances, Family Relationships and the resulting Deprivation Businesses Productivity and Employer Costs The “Consequences of Failure” on the wider community and general public What? are we doing to meet the recommendations of the Francis Inquiry, reduce the risks and number of “avoidable deaths”, reduce the 1/5 th of NHS budget spent on negligence claims

Why? things remain unchanged The many and numerous reports and Independent Investigations all keep retuning the same issues The sad facts are: • The stigma associated with suffering mental illness has not gone away • Mental illness does not get “parity of care” with physical illness • Huge gaps and discrepancies in provision of services across the UK • NHS Primary Care Trusts across the country failed to commission perinatal mental health services resulting in a lack of services that comply to care standards • Currently 97% of Health and Well Being Boards in England have failed to include any strategy on Perinatal (Maternal) Mental Health perpetuating the lack of services. • NHS trusts fail to implement the “lessons learned” from Independent Investigations and fail to comply to care standards This is WHY – outcomes for most patients have remained unchanged for +12 yrs

Who can influence change? The Patient Voice is a Powerful Voice – “Shouting out from the Darkness” After personally investigating the circumstance and treatment that lead to the tragic death of his wife and then campaigning for an Independent Investigation, professional opinion concluded that his wife’s was one of many “avoidable deaths” each year. Chris accepted the advice given to him by: Dr Margaret Oates (OBE) - leading UK expert on Perinatal Mental Health, co-author of The Confidential Enquiries into Maternal Death, author of Independent Investigation into Joes Death: “We know what needs to be done but no-one is listening to us professionals …… It needs someone who has experienced the pain to speak out and campaign for change …. . a voice to unite all the others who endure the unnecessary suffering and avoidable deaths to speak out … the user experience (voter) is a powerful voice that politicians will listen to. ” Catherine Murphy - CEO Patients Association, responsible for the 2011 review and report into Primary Care Trusts commissioning of Perinatal Mental Health Care Services: “We need a body that unites charities, professional organisations, support groups, experts by experience and the voice of users if we are to get parliament or the NHS to listen. ”

The Levers for Change Since 2012 significant progress has been made in pulling together those who operate in the Perinatal Mental Health arena. The plethora of “Organisations”, “Charities”, both local and regional “Peer Support Groups” “Experts by Experience”, etc. have joined together and have shared and agreeing a common vision. Maternal Mental Health Alliance (MMHA) “Top Down Approach” Convened in 2011 by Alain Gregoire, initially with then less than 20 members (including JBMF), the organisation now has over 70 members supporting a common vision “Theory of Change”. Made up of national organisations and charities, working together with strong support from Parliament the aims of the MMHA is to influence at the highest levels (Parliament, NHS, Health and Well Being Boards, Clinical Commissioning Groups, Professional Bodies) for the implementation of a “universal service” for perinatal mental health care that complies to care standards. Perinatal Mental Health Partnership (PMHP) “Bottom Up Approach” Convened in 2014 with more than 50 members (including JBMF) the organisation consists of charities, peer support groups and “Experts by Experience” who are vocal in promoting and delivering “integrated services” for perinatal mental health care and family services. Whilst a member of the Maternal Mental Health Alliance, the aims of the PMHP are to exert influence from the bottom up for access to a services that comply to care standards and best practice, campaigning together to raise awareness and educate the general public and service users, …. . so sufferers have the confidence to discuss and demand access to appropriate services.

Theory of Change

Conception to Age 2 All Party Parliamentary Group The All Party Parliamentary Group (APPG) for Conception to Age 2 (The First 1001 Critical Days) was established in 2013 and is one of the largest and most active APPGs in Parliament, with substantial membership and buy-in from MPs and Lords of all parties. “Our objective is to ensure that the interests and needs of families during the conception to age 2 period are represented to as many people inside Parliament and Government as possible. ” This is not ‘rocket science. ’ Technically it is ‘neuro-science. ’ • Poor attachment leads to poor social and physical development and behavioural problems. Often this can lead to child maltreatment and then the whole destructive cycle can be played out again by the next generation of parents who have known no better themselves. • It has been calculated that as much as 80% of maltreated children could be classified as having disorganised attachment Tackling it should be no less a priority for our politicians and our health and social care professionals than defence of the realm. Tim Loughton MP, Co Chair All Party Parliamentary Group for Conception to Age 2

1001 Critical Days for #Building. Great. Britons The cost of failing to deal adequately with perinatal mental health and child maltreatment has been estimated at £ 23 billion each year. That is the equivalent of more than two thirds of the annual Defence Budget going on a problem that is widespread and when unchecked passes from one poorly parented generation to the next. As our report shows [Building Great Britons Conception to Age 2: 1001 Critical Days] the two are closely linked and more importantly largely avoidable. Tackling it should be no less a priority for our politicians and our health and social care professionals than defence of the realm. 1001 Days Strategy Fund to support Local Authorities “From only 1% of the budget of the Departments for Education, of Health, Justice, Home, and Communities and Local Government you get to more than we’ve ever spent on early intervention and prevention. This would come to about £ 3 billion which is huge and savings would be made to those very Departments over time”. Sharon Hodgson MP A Minister for Families and Best Start in Life With cross-departmental responsibility, drawing together all relevant departmental ministers, with a remit to draw up a ‘ 1001 -days’ strategy Master Plan within 12 months of the election. The Minister should either be in the Cabinet or reporting directly to Cabinet.

Key Workstreams & Milestones 2013 Stage 1 Stage 2 Awareness S 4 S 5 Business As Usual Review Design, Development & Delivery Feasibility Business Case MMHA Website Stage 3 Applications & Tools – media based, open access, self help app’s, self referral, map of services, etc. Parliamentary 1001 Commission Critical Days Parliament Launch Parliamentary Support Report Annual Review Annual Review MMHA National Campaigns MMHA Formed National Awareness Campaigns Education MMHA Core Resources / Funds Models of Best Practice and Gap Analysis Education & Training – Accreditation, Evaluation, CPD, etc. Regional Workshops – Design and Delivery of 1 st class services Seminars & Conferences Gap Analysis User Needs vs Services Action Specialist (Accredited) Resources – Health Care Professionals and Volunteer s Applications & Tools – media based, open access, self help app’s, self referral, map of services, etc. Support Groups – Coordination, Education, Information, Supervision, “Integrated Care Networks” PMHP Formed Regional Forums – HWBs, CCGS, NFP, NGO, User Group, Patients, Carers, etc. CCG / MMH Specialist Commissioning Group RCGP – Clinical Champion National, Compliant “Integrated Care Networks”

17 th March 2015: A Pragmatic Approach to NICE Card Stds NICE Care Standards based upon validated research (Randomised Control Trials) should be the basis for all treatment Lack of Service Provision Alternative Effective Treatments A Pragmatic Approach to the Realities of Primary Care GP’s should be pragmatic, when faced with a choice of following NICE recommended treatments when they are not available or not appropriate for the patient, the needs of the patient are paramount. Professor David Haslam, Chair of NICE

NICE Care Standards Perinatal Mental Health Care NICE recommended treatments and services are the “The Gold Standard” primarily using the evidence base from Randomised Controls Groups BUT these services may not have been prioritised, have the funding, the resources or the capacity to meet demand.

Field Studies and Other Evaluated Services The Patient Voice is a Powerful Voice – “Shouting out from the Darkness” Field Studies and the Independent Evaluation of “other services” that meet the demands of patients should not be ignored …. . Esp. where “specialist services” are not available! Prof Graham Thornicroft - Stigma and discrimination: “there is no health without mental health” shows to have had a positive change in attitudes to mental health key lessons learned includes the need to provide information (raise awareness) and discuss (encourage disclosure) at the first opportunity to overcome barriers and allow for early intervention Prof Vicram Patel - WHO Maternal Mental Health and Global Health: “. . it is not necessary to have trained and qualified perinatal mental health professionals to make a significant difference, as peer support can be very effective too. Research from India and Pakistan (countries with low-incomes and resources) has shown in field trails covering 18, 000 participants, that with “Training in Basic Awareness” and providing “Information Sheets on How to Help”, Psychosocial Interventions from peer support volunteers can provide effective support and treatment for 50% of those suffering from anxiety or mild to moderate depression…. . a “lesson to be learned” and implemented in richer countries with limited resources. ” Addressing “Patient Needs” “. . if there are NHS or professional care services what can we do to help ourselves? ”

Best Practice - we know what to do What is the “Best Practice” in Perinatal Mental Health Care Puerperal Psychosis 1 in 500 Mums 1, 412 per annum Severe Postnatal Depression 21, 187 3% of Mums per annum Mild to Moderate Postnatal Depression 10% to 15% of Mums And up to 10% of Dads Anxiety and The Baby Blues 50% of Mums Specialist Perinatal Mental Health Services Mother & Baby Units Specialist Perinatal Psychiatrists Not admittance to general psychiatric ward Not untrained - Crisis Teams – “gatekeepers” NHS Integrated Care Networks Nottingham, Southampton, Birmingham, Glasgow, etc. 84, 750 per annum 353, 124 per annum Numbers based on 706, 248 live births in 2009 and the agreed rates of occurrence NHS Non-Specialist Services Trained and accredited PNMH Champions supporting GP’s, Midwives, Health Visitors, Care Workers IAPT 3 rd Sector Support Family Action, ACACIA – peer support groups Homestart / Pip. UK – 1 to 1 volunteer support Net Mums - online CBT self help & chat rooms Joanne Bingley Memorial Foundation raising awareness, disclosure, advocacy, training. Barclays - Work Place PNMH Champions

A Pragmatic Approach to Perinatal Mental Health Care

18 th March 2015 Budget £ 25 bn £ 12 bn Economic Cost of not tackling Child Maltreatment and Maternal Mental Health Savings required from Welfare Budget £ 1. 25 bn Additional Funding for Child and Maternal Mental Health £ 3 bn 1001 Days Strategy Fund to support Local Authorities and A Minister for Families and Best Start in Life

The Patients Voice is a Powerful Voice …. . We are “Shouting out from the darkness” Advocates Promoting Disclosure, Discussion and Education

Why I am here …… Lost hopes and dreams …. .

Why I am here …… Prevention and Early Intervention #Time. To. Change Disclosure, Discussion and Education …. … Its Not Too Late!

The Joanne (Joe) Bingley Memorial Foundation § Founders Statement § How we help § Why I am here……

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 at home for severe postnatal depression she took her own life. “The Joanne Bingley Memorial Foundation is a charity that 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 – How we help How the foundation delivers it’s aims: • Raising Awareness in national media, Twitter, Facebook and our website to encourage open discussion and raise awareness • Website and information leaflets - we provide information on what you need to know so dads, grandparents and friends can help. • Knowledge of ‘Best practice’ – presenting at seminars and workshops to inform commissioners, dept health and parliament on patient and service issues, the impacts of legislation, care standards, models of best practice , etc • We provide training & education workshops for health care workers both professional and volunteers • Membership of and supporting the Maternal Mental Health Alliance and the Perinatal Mental Health Partnership we work with other organisations to deliver improvements in PNMH services. • Through links with MP’s and other organisations we inform NHS policy makers and parliament of service user issues and expectations

And Finally What we have done for ourselves alone dies with us; What we have done for others and the world remains and is immortal Albert Pike