The objectives of Phase Two were;

Our first contribution has been published on the website www.bristol-inquiry.org.uk and both contributions follow here.

Written by Judy Walker, Chairman of the Trustees

1. We see the paediatric patient as essentially vulnerable and at risk in the hospital environment. They are disadvantaged due to their different thought processes, limited experience and dependence on parents or carers for emotional security.

Illness, accidents or invasive medical investigations can all bring the emotional challenge of;

the threat of physical harm.

separation from one’s parents and other trusted people.

the threat of strange and unforeseeable experiences.

uncertainty about acceptable behaviour.

relative loss of control and personal autonomy. ¹

2. We see parent and family functioning as potentially impaired by the illness of their child. Anxiety, disruption to routines and lack of knowledge change the way they are able to care for their child.

3. We believe in the concept of child and family centred care where the child’s family is involved in his care and sufficient information is provided to ensure equality and balance between doctor and family is achieved. We care holistically for the child, in the context of their family and culture, as well as in terms of their emotional, social and physical needs. The play specialist is concerned with the overall welfare of the child not just his/her clinical needs.

4. We work closely with members of the Multi Disciplinary Team (MDT). For example many play specialists work alongside physiotherapists using play to assist in therapy. We use our specialist knowledge to distract children undergoing unpleasant procedures. We also contribute with our observations of the child’s physical and emotional state, report on treatment issues, which have arisen for the child or family and give the child a voice. In one case a six-year-old surgical patient revealed his great fear of needles to the play specialist. She passed this information to the parents and the child’s nurse who rang the anaesthetist who agreed to give a gas induction if the child preferred. The child was told he had a choice which helped him feel in control and gave him confidence and enabled him to trust those caring for him in hospital.

Play, and the relationship that develops through play, is the tool we use with the child and the family to facilitate;

healthy adaptation to the hospital experience.

appropriate understanding of the procedures it entails.

continued cognitive, physical and emotional development.

Without formally recognised, and overtly stated, policies which are established and owned by management as well as the medical and nursing teams, the culture of child and family centred care is vulnerable to the personalities and preferences of individuals. New developments, which lead to a positive improvement in patient support, might cease to operate when a significant member of the team leaves, or pressure to change priorities could leave an existing good practise with no resources. There are many excellent examples where policies on child and family centred care are well-established in NHS Trusts but there are great variations in implementation.

The child patient is not seen as essentially different from the adult.

Unless there is understanding of the particular needs of the patient group, for example children and their families, there can be an inappropriate balance of focus on the medical or surgical problem rather than the person who has the problem. Children especially benefit from appreciation of their developmental and psychological needs; their compliance with treatment and recovery times have repeatedly been shown to improve and their length of stay and post hospital behaviour problems are demonstrated to be reduced. (See Lansdown (1996 )for a summary of the research).

The roles of the members of the professions allied to medicine are not highly valued or understood.

The support for non-clinical roles can be poor at the most senior level within the hospital, Trust or Department of Health. There are about 800 people practising as Hospital Play Specialists in the NHS currently and yet the Department of Health has had no formal or informal contact with the profession since 1992.

Often the support from ward staff is excellent because they can see the importance of play services for themselves. A part time play specialist was appointed for the A&E department of a busy DGH and the senior staff nurse said that she noticed a change immediately. The children were calmer and more co-operative when being examined and easier to care for.

Professional jealousies between members of the MDT are sometimes the fault of conflicting demands from above. For example, pressure on hospital teachers to conform to National Curriculum timetables, inhibits them from being flexible to the needs of sick children. And in recent months it has meant competition in some hospitals between teachers and play specialists for time with patients. Play specialists are anxious the children will miss out on the therapeutic value of play in hospital if they are expected to be in school for long periods.

There is insufficient formal feedback from the users of the service.

The creation of a high quality NHS depends greatly on involving patients in the policy making loop, ensuring it remains responsive to patient’s needs. NHS policy emphasises the need for user involvement in the planning, development and delivery of services at all levels within the NHS2.User involvement makes it “more likely that different perspectives are covered.”3. Recently one London Trust found that in a survey of eighty 4 to 14 year olds using a children’s out patients clinic where the staff wanted to come out of uniform, thinking the children would prefer it, 76% of the respondents wanted uniforms to remain.

The historical culture that “Doctor knows best” is still operating amongst the older generation of patients and consultants and is still pervasive in paediatrics. Its effects are subtle but damaging. For example information flow is disrupted when consultants have a paternalistic attitude; the consultants dominate ward rounds and useful discussion between other MDT members is prevented.

However medical paternalism is also operating within a culture where people expect to be treated with respect and to be kept informed in all aspects of their lives from their children’s education or their mail order purchases. Our society is more assertive in its demands on those who provide services and increasingly patients are expecting doctors to listen to them and discuss options with them. One side effect of this is that they are more likely to complain or seek legal redress if they are not satisfied.

It must be noted however, that medical paternalism can be apparently supported by the behaviour of the parents. The anxiety generated by the threat of illness or harm to their child tends to disable many otherwise competent adults. In the face of medical uncertainty they may become passive and accepting of the care their child receives and unable to step into a questioning mode.

(There is also an imbalance in the power between staff and parents set up by the institutional nature of the hospital, which gives the message that the individual parent is of little significance.)

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Right to information

Legal requirements in childcare have changed with the Children Act (1989) which has put the onus on the child being allowed a real voice in decisions about their care. This must mean that they are given the appropriate means of understanding the nature of their treatment in hospital. The hospital play specialist has a key role in ensuring this happens. In situations where there is support and understanding of the role and a culture of child friendly practises, the HPS undertakes formal preparation programmes for a large variety of situations. Using directed play, puppets, videos, photo stories and other specially designed materials, he or she takes the child or group of children through what they know about the procedure, replaces the fantasies with the facts, gives support for the emotional impact and helps them develop coping techniques. As a by-product of this work with children, the play specialist frequently encounters parents who also have little understanding of the procedure and do not know how to find out more. Our child-friendly explanations often enable them to grasp the essentials and we then direct their questioning to named staff.

Without this level of work, children under ten years have little chance of understanding what is planned. There are many wards where play preparation is not taking place due to lack of qualified play staff and restrictive views of the role of play. The problem for us as a profession and the NHS as a whole is that both children and parents are receiving care without having enough information or understanding to make consent valid. We feel it is a clinical and legal right which we are well placed to fulfil but are frustrated by the slow progress towards making it the standard practice.

Decades of research demonstrating the improvements in clinical and psychological outcomes of preparation through play and ensuring sufficient support and information is given to parents should be enforced with clear policy guidelines throughout the whole NHS.

Policies and guidelines can be established from existing good practise and research. There is sufficient evidence to prevent the need for costly research. NICE should involve professional bodies from the professions allied to medicine to write and disseminate up to date national guidelines. The smaller players have a lot to contribute.

Lugon and Secker-Walker4 define Clinical Governance as “the action, the system, the manner of governing clinical affairs. This requires two main components: an explicit means of setting clinical policy and an equally explicit means of monitoring compliance with such policy”. The patient experiences far more than the clinical intervention when in hospital and these experiences may affect the outcome of the admission positively or negatively. There is a dearth of systems in place to monitor the quality of the non-clinical intervention.

Monitoring the contribution of the professions allied to medicine would also enhance recognition of their value and enable standards to be reviewed and improved.

Our role means we spend many more hours than other staff (except in intensive care and theatre) with the children and their families and consumer audit is important to us. We hear the patient’s issues and concerns on a daily basis and while we advocate for the individual child, our voices would be strengthened if audit was more widespread. The views voiced by parents and patients must have a direct link back into the policy making loop.

Giving the title of hospital play specialist a legal framework would enforce training standards and improve the quality of practice. All the non-clinical professions allied to medicine need to go down this road.

The clinical and legal right of children and their parents to receive information in a manner that they can understand should be fully acknowledged and greater recognition given to the play specialist’s role in this.

Co-operation between the non-clinical professions on clarifying and understanding professional working practises would improve relationships. For example, occupational therapists and play specialists overlap in their professional skill boundaries and will waste valuable time in negotiating their positions from scratch when a policy is not in place.

Improved nurse training and recruitment

Child and family friendly policies are hit hard by nursing shortages, despite the obvious benefit that parents usually undertake more of the children’s care. Under the stress of shortages, nursing staff tend to perform traditional core functions in preference to new ones and restrict parents’ involvement.

Nurses with little formal paediatric training are often very inflexible in their approach to patients and their families. This “Nurse on a paediatric unit” rather than “Paediatric Nurse”, often has just as much influence on a children’s ward’s quality of care as those who have studied child and family centred care as part of their training. They have specific training needs which need to be addressed.

Visintainer M.A. Wolfer J.A. “Psychological preparation for surgical pediatric patients; the effect on children’s and parents’ stress responses and adjustment” Pediatrics 1975; 18, 1389-95

Local Voices, the views of people in purchasing for health.. NHS ME (1992)

Priorities and Planning Guidance for the NHS: (1997) NHS Executive 1998/99.

NHS Executive (1996) Maternity Services Liaison Committees; Guidelines for Working Effectively.

“Clinical Governance; Making it Happen” Eds. Lugon M, Secker-Walker J, Royal Society of Medicine Press 1999

“Children in Hospital” by R Lansdown, (1996) OMP

observation,

active listening,

establishing rapport,

empathy,

play,

puppetry

distraction and coping skills training

Developmental psychology based on Piaget, Erickson, Bowlby, Robertson

Basic medical terminology

Nursing systems

Locally produced photograph and story books

Published books relevant to hospital experiences

Puppets

Scale models of equipment such as CT Scans

Handmade or adapted commercial dolls and teddies with extra features, e.g. catheters, blood or attachments like a plaster cast

Videos of specific procedures or techniques

Distraction tools such as bubbles and pop up books.

Copyright Judy Walker, NAHPS May 2000

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