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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report 3. Evolving Diagnosis In the community setting, GP’s described their role as being an advocate for the family; interpreting information that has been provided in the hospital setting and providing support particularly in the initial period following diagnosis. Public Health Nurses are involved either in specialist disability roles, where they have a particular responsibility for visiting families who have received a diagnosis, or through general roles, where they make routine visits to the child’s home after the birth. Sometimes the Public Health Nurse may only become aware that a child has been given a diagnosis when they arrive at the home for a routine visit. Public Health Nurses are also involved in developmental checks either in the home or clinic setting, where concerns may be raised about a child’s development, leading to onward referrals. Consultant Paediatricians pointed out that a current lack of Developmental Paediatricians is causing an acute strain on resources and long waiting times for parents; which particularly affects families awaiting assessment and diagnosis in an evolving situation. Speech and Language Therapists provide first information to families in a variety of settings, including in the community setting, where they see children who have been referred by GP’s, Area Medical Officers, or where there has been self-referral from families for suspected language delay. When the Speech and Language Therapist assesses this delay it may emerge that there is a more significant disability present, at which point the child is referred for further assessment, often with a Psychologist who may work as part of a team in Early Services or in the community setting. The Early Services team providing assessment may include members of a multi-disciplinary, interdisciplinary or trans-disciplinary team, such as Social Workers, Speech and Language Therapists, Physiotherapists, Occupational Therapists, Consultant Psychiatrists, Consultant Paediatricians, etc. Consultant Psychiatrists described their involvement as being chiefly involved with children who have an evolving diagnosis, and having a particular role where there is dual diagnosis (of intellectual disability and a mental health diagnosis) and in the diagnosis of autistic spectrum disorders. Within the Early Services team the Social Worker provides direct support to the family and will commonly be the first person to introduce the team members to the family, and explain the services that will be provided. What is currently working well, what needs to be improved, and recommendations for best practice. The following section sets out the findings of the focus groups in relation to what parents and professionals felt was working well, what they considered to be in need of improvement, and the best practice recommendations arising from these discussions. The findings identified striking commonality between the recommendations made by parents and by professionals, pointing to a process that has clearly identified areas for best practice implementation. Within the focus groups the need was emphasised to pinpoint areas of current process that should be maintained as well as addressing areas that require improvement. The recommendations made fall broadly into the following categories: 1. Setting/Location and People Present at disclosure 2. Communication 3. Information and Support 4. Culture and Language 5. Organisational and Planning requirements 6. Training, Education, and Support for professionals 7. Dissemination of Guidelines and Best Practice The following paragraphs summarise the themes in terms of good practice and current deficits as discussed in relation to each of these areas by both parents and professionals, illustrated by direct quotations from the focus groups and followed by the corresponding recommendations for each section. The quotations reflect a diversity of responses received with positive and negative experiences described. Some of the direct quotations describe distressing situations in which the families received their diagnosis and many show the empathy and commitment of staff members in providing the best service possible. The intention of this report is to provide an accurate portrayal of the experiences of staff and parents and to illuminate the issues that need to be addressed to promote best practice. The often emotive quotations used in this section of the report reflect the importance the participants in the parent and professional focus groups placed on the manner in which the diagnosis of a child’s disability is communicated. Throughout the report any names, rare syndromes and other identifiable information mentioned has been changed to protect confidentiality. 53 4. CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report 4.2.1. Setting/Location and People Present at disclosure Themes: The experience of providing the news to parents that their child has a disability begins with the location that is chosen for this consultation, and the people who are present. During the focus groups professionals frequently expressed frustration with the existing lack of private facilities in which to give news to parents, while parents indicated that the lack of privacy was often a very distressing factor of their experience. “You can be in a ward with twelve people, and you’re telling them behind the curtain. The mother has had a Section so can’t go elsewhere, you have to tell them on the ward, it’s a horrible situation. We try to get them to rooms on their own but with crowding it’s very difficult to get privacy. They do try but practically, it’s not possible.” (Consultant Paediatrician) “I always remember hiding under the sheets. I was in a four-bed ward, trying not to cry too loud. I felt I couldn’t even scream or let my emotions out.” (Parent) “I think, having worked in hospitals where there was a designated parent’s area, and having worked in hospitals where that isn’t present, you can really see the advantage of having it there. Just having a warm environment with simple things - a kettle and some tea make a huge difference. As well as that it gives you an area in which you are comfortable to deliver the news because you are used to that environment – it’s somewhere that is familiar.” (Trainee Paediatrician) As well as being private, the space in which the news is given should be comfortable, free from interruptions, and available for the family to spend time in following the disclosure. Parents advised that the number of staff members present while the news is being given should be limited and in particular that the disclosure consultation is not an appropriate time for training to take place. “They brought us into a tiny room they use as a family room, there was a dirty yellow sofa, which was very low, and there was one other chair. We sat down and our knees were kind of pressed together with their knees, it was really a very awkward situation to be honest. So they all came in; the doctor came in, the social worker, the nurse, and the entourage of students…. There were six of them and two of us. I can understand one student, but three or four or five….?” (Parent) Many parents who received their diagnosis in the maternity setting spoke of having to stay in a public ward where other families were present after the news was given, and described the difficulties that this presented. “It was only then the next day, the very first thing, you know when the clatter starts and everyone starts getting busy at half six in the morning? All three curtains of the other three ladies were all zipped around. Not a soul, not a sound, nobody saying a word, and they all with their babies. … So it was me who was doing the psychological thing in the morning, it was ‘Good morning’ to everyone… they didn’t know what to say to me…. I had had a Caesarean, so four hours later I couldn’t walk out the door, but I felt like doing it. … I felt like I was the one who was reassuring these other people.” (Parent) Parents often described the importance of having time to bond with their child as a baby, before the focus is placed on the disability. “There were about ten people in the delivery room plus ourselves, and when he was born the whole place went quiet. It was so eerie. That to me said that something was definitely wrong, and they took him over to examine him and I asked from the bed, ‘Is the baby alright?’ And nothing was said, and the doctor picked him up, brought him over and put him on my chest and said ‘You can see for yourself’. He actually said that. So I just lost it – I said ‘Has the baby got Down Syndrome?’” (Parent) “I kept asking him lots of questions when I saw him, and in fairness to the Professor he always gave us loads of time when he spoke to us. When I asked him, he said ‘take him home, treat him as a baby. There are other things you wont have to worry about until he grows up like all the rest, and you still don’t need to worry’ I thought it was great what he said to us.” (Parent) 54

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