Select Committee on Health Written Evidence

9. Evidence submitted by BLISS (PPI 9)


  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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