A4.17 Concerns raised by families via interviews
Quotes and commentary from the parent /carer interviews have been incorporated into appropriate sections throughout the rest of the results section. Feedback which did not easily fit within other sections is included here.
Summary of additional concerns raised by families
1. Lack of emotional support to deal with a mental health diagnosis
2. Barriers to communication with professionals add to the stress for families
3. Need for written information about processes and provision needs to be available to support families' understanding
4. A focus on one aspect of a young person's difficulties can create further problems in meeting their needs
5. The lack of therapy, education and other interventions
Many of the parents interviewed reported being " traumatised" by their experiences and would 'well up' as they were speaking. Some were obviously overwhelmed by the various processes they had to engage in. Questions about their involvement in planning meetings for instance received responses such as " what can I do about it?" and " I am not sure what the plan is now".
Clinicians reported that families they had worked with had tried lots of ways of expressing their views but still felt their views have not been taken into account. They described parents struggling with the difficult adjustment to being parents of an adult when some decisions, including about medication, may ultimately no longer be up to them. Some parents found multiagency meetings and mental health tribunals distressing, even when they agreed with decisions being made, due to having to talk about the range and extent of their child's difficulties in such big meetings.
A4.17.1 Managing the implications of diagnosis
Parents described a feeling of "being abandoned to deal with the feelings" that came from their child being diagnosed with mental ill health. No parent identified being offered specific support to deal with the emotional impact (although two sought out counselling for themselves).
There was little guidance given as how to behave or discuss the situation as a family and with the young person themselves. Parents described " feeling de-skilled" and being advised to "treat her as if she had not been in hospital". Some parents said they were left with more questions than answers . "How then were they to explain the last few weeks/months? What were we supposed to answer when our child asked us what had happened? How did we deal with the impact on their siblings? What did we say about their brother and his behaviour?"
A4.17.2 Communication and involvement
Strong communication skills were identified by parents as one of the key competencies for staff working with their children. Where communication was poor and staff seemed unwilling to take on board information about their young people, parents felt extremely anxious and questioned the appropriateness of the setting. Not understanding what was going on themselves and struggling to get information was also a common problem for all the parents interviewed.
One parent described repeated attempts to speak with the consultant about his child, " we felt the nurses were 'gate keeping' and were told 'he'll call you' but he didn't. It was so frustrating; we just wanted the chance to ask questions. Of course we came across as 'demanding', but it really was like hitting your head against a brick wall at times".
One parent felt very strongly that poor communication on the part of the professionals had negatively affected her relationship with her child, "he has completely 'lost faith' in us finding him a better place. How this makes us feel as parents is beyond description, and despite us regularly complaining to those involved...no progress has been made".
However, some parents reported positive and helpful communication and emphasised " how helpful this was, all my questions were answered honestly and I was given proper information and kept up to date".
One parent referred to an incident where initially information was withheld from her, she complained and received a written explanation, "it was really not a big issue but just don't hide things from me". This situation led to a more positive relationship between the parents and the professionals, conversations became more open and continued to develop positively "as if ground rules had been established".
Another parent referred to how good "the GP was at keeping us informed. They had knowledge and understanding of autism spectrum disorder and were very sensitive, helping us to make sense of things".
A4.17.3 Lack of written information about processes
Parents reported being given very little in writing about the processes they and their young people were going through. Written information of itself couldn't replace information provided in discussion with a practitioner, but could be " very helpful later when you want to go over what has been said and try to get the whole picture".
When issues had been discussed that were upsetting and emotive it was natural for people to forget or not take in some details. This caused misunderstandings between parents and professionals and upset on all sides. Having written information as a 'back up' would have given both family and professional a shared point of reference.
Parents talked about having to find out things for themselves. Several referred to the Mental Welfare Commission website as "extremely useful" but said they were " not signposted to it, more luck than anything".
One parent talked about having fairly regular meetings with the staff but there being " unclear agendas, vague outcomes being set with no real timeframe, we were sent brief minutes but no real actions seemed to be up for discussion or recorded. We really didn't know what was supposed to happen next and it never seemed to get any clearer".
Young people were placed in a range of settings including pediatric wards, adult LD wards, secure and forensic settings, YPUs and general hospital wards. One mother whose child was transferred between a number of these settings said "I was hardly ever introduced to the setting, what it could provide or really why we were there. Of course sometimes I knew it was because nothing else was available". She contrasted this with a "time we were taken through the reasons for being admitted by a doctor and what kind of timeframe she was expected to be there for. In the midst of all the awfulness that was so helpful to us both. Everything feels so out of control it was like we could see some way ahead".
A4.17.4 A non-holistic perspective of the young person
Parents talked about one aspect of their young person, their learning disability or a particular behaviour, being addressed rather than a whole person approach.
The needs of a young person with autism spectrum disorder who also had an eating disorder were a powerful example. The parent talked about a management approach being taken which disregarded the young person's need to know what she was about to eat. The need to know what was planned and in what order things would happen was not recognised by the staff. The young person was able to explain this need and was supported by the parent but both were told that was "not how eating disorder is managed here".
Parents reported that their young people with autism spectrum disorder who could articulate their distress at how they were being managed were characterised by some staff as being "attention-seeking".
A4.17.5 A lack of therapeutic input and other interventions within settings
Parents talked about being surprised at the limited access to therapy for their young people. Where it was made available parents had seen it as something positive. One young woman had received group therapy and worked with an art therapist, " this really seemed to be helpful, she enjoyed it. When she was transferred nothing was offered in the new setting, it seems a shame".
Two parents were told that their young people " wouldn't benefit from it" but did not feel they were given an adequate explanation for this statement. One parent said her child had received 1:1 therapy "but because he couldn't remember it I was told 'we won't waste our time', he may not have remembered but I saw a real improvement in his mood when he was getting that input".
When young people were in any setting for a while parents reported becoming increasingly concerned as "to what was happening, other than medication what else was being done to help them?" A parent said " after a while I realised he was just being contained, maybe that is ok for a short while to get over a crisis but eventually a lack of intervention and interaction just seemed to be making things worse".