Download Review of Maternity Services 3.3.10

Agenda Item 5 (Bereavement Initiatives)
Who cares when you lose a baby? A report by NMSF
WHO CARES WHEN YOU LOSE A
BABY?
A comprehensive study into bereavement midwife care
across NHS Trusts
by National Maternity Support Foundation
29th October 2009
1|Page
Agenda Item 5
Who cares when you lose a baby? A report by NMSF
Contents
Page
Key findings…………………………………………………………….3
Summary………………………………………………………………..4
Part I
Background……………………………………………………………..5
Introduction…………………………………………………………….6
Part II
Note on methodology………………………………………………..7
Case Study……………………………………………………………….8
Comments from selected NHS Trusts.…………………………9
Conclusion..…………………………………………………………….10
About the NMSF………..…………………..………………………..11
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
Key findings

There are 74 NHS Trusts (40 per cent) without a specialist
bereavement midwife counselor

The survey received an 82 per cent response rate from the NHS Trusts

Absolute postcode lottery of bereavement maternity care

Apparent lack of a uniform approach or best practice evident

13 per cent employ a bereavement midwife counselor on a part-time or
job-share basis

There was a complete disregard of the specialist nature of
bereavement midwife care evident from some NHS Trusts

One London Trust’s bereavement coordinator post was supported by
Macmillan Cancer Support whose focus was on the relatives/carers of
adult cancer patients. Therefore, there was no provision for maternity
bereavement care, which they seemed to think was acceptable

Urgent re-evaluation is required as to how these critical services are
delivered and evolved nationally
In partnership with
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
Summary
This report is based on a survey carried out amongst NHS Trusts, using the
Freedom of Information Act. The survey looked into their provision of
specialist bereavement midwife care for couples and their families who have
suffered the death of a baby either at birth (stillbirth) or shortly afterwards.
The survey, which was conducted between June and August 2009, was
undertaken to highlight the shortcomings in bereavement care available
through NHS Trusts across England & Wales.
Around four out of five NHS Trusts responded to the survey with the
disclosure of the required information. This is the first wide ranging report
into the state of bereavement midwife care across the NHS and brings
important issues surrounding the service to the forefront.
The fact remains that 6,500 babies are stillborn or die shortly after birth¹ per
year so the need remains for specialist bereavement counselling to be
available within every NHS Trust where maternity care is available.
It is somewhat alarming that several Trusts had never offered bereavement
midwife counseling and others that simply paid ‘lip service’ by offering the
services of their Chaplain. Others simply outsourced their bereavement care
to either Local Authorities of other charities, such as Sands (Stillbirth and
neonatal death).
In other Trusts the responsibility was shared amongst the midwives, with no
formal qualifications in counseling. In the latest Healthcare Commission
report² it is clearly stated that Trusts should ensure that all staff are
appropriately trained, up-to-date and confident in practising the essential
skills needed for a safe and high quality maternity service which must include
bereavement care.
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
¹Figures obtained from Sands Why17? campaign. Based on 17 babies being stillborn or dying shortly
after birth. http://www.why17.org/
²Healthcare Commission Towards better births: A review of maternity services in England
PART I
Background
In October 2005, the author of this report, inspired by his own experiences
and those of his wife and family, received incredible ongoing bereavement
counselling through their local NHS Trust following the stillbirth of their first
child, Jake Canter.
This support gave them tremendous strength and hope. It was the key to
helping them through their darkest periods and getting their lives back on
track. Without this support they are convinced that they would not have been
able to rebuild their lives to extent they have done. The bereavement care
was offered to the couple by their local NHS Trust even though the stillbirth
occurred at another hospital outside of their locality.
Having attended local support groups organised through Sands they were
shocked at the lack of bereavement counselling available through the NHS.
Although Sands offer a befriending service they felt that this did not go far
enough in dealing with the emotional turmoil and post-traumatic stress they
were suffering.
During this time they met many other parents who had suffered the loss of a
baby. The picture of bereavement care and counselling was extremely mixed.
Many were still suffering from the shock of losing their babies and were
unable to get the counselling they desperately needed.
This was a key motivating factor in conducting the survey into the state of
bereavement midwife counselling.
In partnership with
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
Introduction
The sad fact remains that thousands of babies are stillborn or die soon after
birth. The death of a baby is a devastating experience and the effects of grief
can be overwhelming. This tragic event affects the whole family, not just the
prospective parents, but grandparents, brothers, sisters, aunts, uncles,
cousins and friends.
The ‘knock on’ affect of losing a baby is often overlooked by the health
authorities in terms of bereavement care. Often the grieving parents are told
that they can get support from charities and are handed several leaflets to
guide them through the difficulties surrounding the loss of a baby.
Often the parents and other family members are in shock for some
considerable period. The mother is especially vulnerable as she must cope
with both the emotional turmoil of losing her baby and the physical trauma of
going through the labour process and all this entails with nothing but a dead
baby to show for this tremendous effort.
Although midwives do receive bereavement care training, it remains a tiny
part of their overall training and does not include any counselling skills which
are so critical following the loss of a baby.
Some guidelines³ on bereavement care following the loss of a baby, but they
were produced in November 2003 and last revised in March 2005.
Spending on the NHS is finite and funding is difficult to come by. However,
this report acknowledges that there are obvious gaps in the maternity
services that must be addressed.
In partnership with
NMSF ּ 23 Turpins Chase ּ Oaklands ּ Welwyn ּ Herts ּ AL6 0RP ּ UK
Tel: +44(0)1438 712436 ּ Mob: +44(0)7855 447157
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
³Foundation for the Study of Infant Deaths Guidelines for health visitors and midwives when a baby
dies suddenly and unexpectedly . http://fsid.org.uk/Document.Doc?id=89
PART II
Methodology
Over the period in which the Freedom of Information survey took place,
responses were received from 82 per cent of local NHS Trusts. Although the
PCTs were contacted they did not hold the information and deferred the
request for information to the providers of maternity care at the NHS Acute
Trusts.
It was clear that a significant number of PCTs had not been commissioning
this type of service.
In partnership with
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Tel: +44(0)1438 712436 ּ Mob: +44(0)7855 447157
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
Case Study
Lisa Frost, recently bereaved Mother (26th August 2009)
“After 4½ years of trying to conceive, lots of fertility tests and in 2008 one
failed NHS Funded IVF attempt and two major operations in September and
December 2008 we conceived our son, Jamie February 2009. After a very
scary first 12 weeks (4 threatened miscarriages) my pregnancy was happy
and healthy until 23rd August 2009 when he stopped moving and after a scan
at the hospital I heard the immortal words 'I am so sorry but there’s no heart
beat'. Our world stopped on that day. On the 26th August 2009 I gave birth
to our son, Jamie.
The care following Jamie’s stillbirth was awful and failed in all ways. After we
left the hospital on the 26th August 2009 no further contact was made by
midwives or Doctor's to check on my well being and even my GP was not
advised of the stillbirth. All we was given was Sands telephone number.
No bereavement counseling has been offered by the hospital. They made no
contact with us after we left the hospital after the stillbirth. The time just after
the loss of your child is bewildering. But, my Mum could not bear to see the
pain we were both in and got our GP out to visit us (she had not been told by
the hospital that our son had died) and she arranged counseling for us. I am
also funding private counseling.”
Quotes from bereaved parents
“I gave birth to my daughter Rexie on 18th May 2007 after receiving the
news on the previous day that my daughter did not have a
heartbeat. My husband and myself had to make very important decisions
regarding my daughter, we just felt bombarded and rushed. We never ever
had any counseling and no bereavement midwife was ever presented to us.
We are still today trying to deal with the whole traumatic experience.”
Anonymous, bereaved Mother, Hertfordshire
In partnership with
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
“There wasn’t a bereavement midwife (or councillor) in place when Elliot died
–though there is a bereavement midwife in place now. Beyond that the post
bereavement care was appalling – it was only through the luck of a trendbucking health visitor that we saw anyone – even our GP only left an answer
phone message and when we did see her a few weeks later, her only
statement was ‘I don’t know what to say’...we received zippo bereavement
counselling through the trust.”
Chris Wildsmith, bereaved Father, Milton Keynes
Comments from selected NHS Trusts
University College London Hospitals NHS Foundation Trust. No
dedicated person, although the head of our Patient Liaison and Advice Service
offers Bereavement care in our Women's Health Directorate. It is not,
however, a counseling service.
Airedale NHS Trust. Airedale NHS Trust does not and has never employed
Midwifery Bereavement Counselors. There is a single maternity unit at the
DGH delivering some 2500 babies a year. In those rare and unhappy
circumstances where there is a still birth parents are referred to a counseling
service through the General Practitioner.
Luton and Dunstable Hospital NHS Foundation Trust. We do not have
a specialist bereavement midwife and have never had one. All midwives as
part of training learn about pregnancy loss and how to break bad news in
relation to antenatal screening etc. We also hold pregnancy loss study days
for all staff including non-trained. Therefore those who do some counseling
are midwives, senior midwives and medical staff.
Shrewsbury and Telford Hospital NHS Trust. Although the Trust does
not have a specialist Bereavement Midwife, the Maternity Services are
supported by the Sands Charity and midwives liaise very close with Sands
representatives. Individual parents are supported by their midwife at birth
and their community midwives. Guidelines and patient information are in
place to ensure all relevant information and support is available.
Southport and Ormskirk Hospital NHS Trust. At Southport & Ormskirk
Hospital NHS Trust we do not have a specific midwife bereavement counselor
at present – nor have we had in the past. Although our midwives do receive
training on bereavement, if a woman requires counseling she is referred by
the midwife/health professional to her GP for access to this type of service.
In partnership with
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Tel: +44(0)1438 712436 ּ Mob: +44(0)7855 447157
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
South Downs Health NHS Trust. We do have a Children and Young
People’s service, but within that there is no bereavement service for parents
experiencing neonatal deaths. The only bereavement service we offer is in
relation to deaths of older children with disabilities and in a broader sense in
relation to the grief experienced by parents when they have a disabled child.
Conclusion
The survey conducted for this report has revealed that the level of
bereavement midwife care is completely inadequate in a significant number of
NHS Trusts offering maternity services.
It is clear that there is a somewhat ‘patchy’ approach to bereavement midwife
care with an apparent lack of national strategy and clear up-to-date
guidelines. Surely this must be included in the NICE guidelines on childbirth.
We would like to see the PCTs recognise the importance of these issues
surrounding bereavement midwife care, as they will have a greater impact
upon other parts of the health service due to related mental health issues in
the long term.
We call upon the Government to ensure that every NHS Trust where
maternity services are available has a specialist bereavement midwife
counselor available when required.
We estimate that it would cost £3-4m4 to employ a specialist bereavement
midwife counselor and ensure that every NHS Trust offering maternity
services had access to their invaluable services.
Yet again we are faced with a situation of a postcode lottery of care which
should available nationally, as part of our national health service.
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Charity Registration Number 1118833
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
4
Based on an average annual salary and overhead for a bereavement counselor
About NMSF
Making changes to help save lives
The National Maternity Support Foundation (NMSF) is a registered
charity set up following the tragic stillbirth of Jake Canter due to the nearest
hospital maternity unit being closed. The NMSF's founding principles are to
take a 'proactive educative approach' to maternity care occupying the
'sensible middle ground' of public opinion and to help stop these closures
happening.
The campaign began in September 2006 to Keep Hospitals Open ensuring
that Jake did not die in vain. This activity has raised awareness of the tragic
consequences of hospitals closing due to lack of staff and beds as a result of
underfunding and cutbacks in essential services.
There is now a growing database of the tragic consequences caused by
hospital closures. Sadly, it is becoming increasingly clear that these are no
longer isolated incidents and are occurring nationwide. Through this
information sharing we firmly believe that the NMSF can make the necessary
changes to stop this happening to others.
We are working in partnership with the Royal College of Midwives (RCM), the
professional body of Midwives and consult closely with them on issues
surrounding maternity care. Professor Cathy Warwick CBE, General
Secretary of the RCM is our lead Patron.
Objectives
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
We are totally committed to improving maternity services and have focused
our objectives on achieving this goal.
The objects stated in the Declaration of Trust are:1. To preserve and protect the health of pregnant women and their
babies by assisting in the provision of services or such other support
not normally provided by statutory authorities as the trustees may
from time to time determine.
2. To assist in the research into stillbirth and neonatal death for the public
benefit.
These translate into our four key objectives as follows:1. Campaign to help keep maternity services available, accessible, safe and
well resourced
2. Ensure that prospective parents have all the information needed to make
informed decisions
3. Being a resource for others to obtain information and support
4. Support and promote, in partnership with other organisations, further
research into stillbirth and neonatal death
Patrons
Professor Cathy Warwick CBE, General Secretary, Royal College of Midwives
(Lead Patron)
Dr. Dame Karlene Davis DBE, Hon DSc, MA, BEd, HONS, RN, RM, MTD,
former General Secretary of the Royal College of Midwives
Grant Shapps, Shadow Housing Minister & Member of Parliament for Welwyn
Hatfield
Mr Rami K Atalla MB, ChB, MRCOG
Jo Watt, Leading Community Midwife & Infant Feed Co-ordinator
NMSF Scholarship Programme
Award for Bereavement Care
The NMSF have developed a new category to recognise the importance of
bereavement midwife care. This forms part of the RCM awards which are an
annual celebration of the excellence, innovation and impact of midwifery
practice in the UK.
This award will provide a scholarship or scholarships to enable midwives with
at least five years experience to undertake training in bereavement care with
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Agenda Item 5
Who cares when you lose a baby? A report by NMSF
the aim of practising as bereavement counsellors in a maternity setting, to
support women, their families and colleagues
The criteria on which this will be awarded is as follows:





A strong commitment to supporting parents through the process of
bereavement
An understanding of the needs and concerns of colleagues and
commitment to providing support
A commitment to educate and support colleagues to ensure good
practice is disseminated
Documented experience of previous involvement in this area
Ideas for disseminating good practice and providing peer support to
the wider maternity community.
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