9. Evidence submitted by BLISS (PPI 9)
INTRODUCTION
BLISS, the premature baby charity, is dedicated
to making sure that more babies born prematurely or sick in the
UK survive and that each one has the best quality of life. BLISS
aims to realise this by:
— supporting parents and families;
— promoting new developments and innovations
in care; and
— campaigning for improvements in neonatal
care.
We welcome the opportunity to respond to this
consultation and we will make a number of points regarding the
particular circumstances of patient involvement in neonatal care.
We have been the leading charity working for
sick and premature babies for over 25 years. A major part of our
work is the provision of support to parents and carers such as
a telephone helpline, publications on specific issues when caring
for sick and premature babies, online information and a website
message board.
In addition to our board of trustees, our work
is informed and monitored by a Nursing Advisory committee, a Medical
Advisory committee and a Parent Advisory committee.
1. What is the purpose of patient and public
involvement?
1. For neonatal services to be responsive
to the needs of parents and babies, parents should be involved
in making decisions about the type of service delivered. If parents
are given the support, care and facilities that they need within
a particular neonatal unit, it can impact on their wellbeing—physically
and emotionally, which in turn can impact on their baby's health.
We believe that parents can influence neonatal services in a positive
way and that this will result in reduced neonatal and infant mortality
and better long term outcomes for babies born sick or premature.
2. What form of patient and public involvement
is desirable, practical and offers good value for money?
2.1 There are particular problems in ensuring
that neonatal services are included within mainstream patient
and public involvement programmes. This is for a number of reasons
including:
— Neonatal intensive care is a designated
a specialised service, while special care is not and therefore
different commissioning arrangements apply.
— Although around one in eight babies
are admitted to hospital for some time after they are born, neonatal
care remains a "minority" healthcare area and is often
neglected in more mainstream discussions about maternity services.
— Having a baby in neonatal care can
be an extremely stressful experience for parents and it might
be difficult for parents to revisit that experience within discussions
with other healthcare areas.
— As parents and carers with young
children, who might be in full-time employment, it can be difficult
for parents to find time to attend meetings and read papers.
2.2 Therefore to ensure that the voices
of parents are fully heard within neonatal care, BLISS is running
a programme of user involvement. The introduction of managed clinical
neonatal networks run by boards in 2003 has provided an opportunity
to involve parents in the planning of neonatal care. Network boards
are made up of health professionals (both doctors and nurses),
managers, representatives from Primary Care Trusts, commissioners
and should seek patient involvement. The aim of the BLISS programme
is to recruit, train and support parent representatives on neonatal
network boards.
2.3 The programme is currently in the second
year and is designed as a three year programme. In the first year,
funding was received from the Care Services Improvement Partnership.
The objectives of the programme are to:
— Recruit parent representatives to
interested neonatal network boards in England.
— Ensure our parents representatives
on the network boards receive training from BLISS by March 2008.
2.4 This project has already achieved the
following:
— An information pack and application
procedure for parents who are considering sitting on neonatal
network boards.
— A briefing pack for parents who have
been recruited to network boards.
— An area on the BLISS website message
board to allow parents to network with each other and provide
peer support.
— Parent representatives receive regular
bulletins and updates from BLISS.
— Network boards cover the cost of
child care as part of routine expenses.
— A total of 18 parent representatives
spread across eight networks.
— A pilot training day for all parent
representatives has been held with more sessions for two different
networks planned for 2007.
— An independent evaluation has been
started by the University of Warwick to look at the effectiveness
of parents represented on the boards.
Work is under way aiming to:
— Develop a suggested induction programme
for all representatives to be disseminated to all network boards.
— Develop training for network boards
on how to maximise participation from parent representatives.
— Draft and disseminate a protocol
of best practice for involving parent representatives to all network
boards.
2.5 The first stage of the programme has
been a pilot exercise of parent recruitment to the three neonatal
networks in the Midlands (South West Midlands, Central Newborn
and Staffordshire, Shropshire and the Black Country). An evaluation
is being carried out by the University of Warwick, looking at
both the pilot area and two other "case studies" nationally.
Early indications show that while there are some barriers to overcome
in terms of the "bureaucratic" nature of meetings, the
BLISS user involvement programme is bringing consider benefits.
Some of the positive aspects include:
— Generating a sense of pride in "our"
NHS.
— Parents being consulted on issues
of importance in neonatal care.
— Assistance with developing communication
materials for parents.
Further research will be undertaken by the University
of Warwick and the findings will be disseminated nationally.
2.6 BLISS would recommend that the principles
of our user involvement project are extended to other healthcare
areas and to other aspects of health policy, such as commissioning.
It is important to find a mechanism where smaller healthcare areas
such as neonatal care are given fair representation. There are
a number of proposals in the Department's Health's document Health
Reform in England: update and commissioning framework, published
in July 2006 regarding community action. If petitions are going
to be introduced in order to trigger community action by Primary
Care Trusts then a device should be found which is not dependent
on patient numbers to allow specialised services to be included.
Specialised services should not be further marginalised because
of the small volumes of patients using the service. In fact it
is even more important to include specialised services as BLISS
has found in relation to neonatal care it can be difficult gain
a review of a specialised service by an independent body such
as the Healthcare Commission.
2.7 Even within the small numbers of specialised
services, there may be minority issues that are important but
low in volume and the needs of these parents need to be equally
represented. There should be a balance between public opinion
and the complexity of the service. One way to do this might be
also to allow parent representatives on network boards to be able
to raise issues of concern and feed in to the formal community
action process.
Emily Robinson
Campaigns and Policy Manager, BLISS
19 December 2006
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