A5: Experiences from working with families of children and young people with LD and/or autism spectrum disorder requiring inpatient mental health care
Sophie Pilgrim, Director, Kindred.
A handful of children and young people with autism require inpatient CAMH care each year in Scotland. While it is fortunate that the numbers are low, a consequence is that the families feel extremely isolated in their experience. The lack of services for their children has a long term impact on wellbeing and cohesion of the family unit.
Lack of appropriate support clearly adds to the unavoidable distress of a child who is acutely unwell. Parents with other children are constantly concerned about the impact on siblings who inevitably witness very distressing scenes. Parents are shocked by the involvement of the police in admissions and by the scrambling for inpatient arrangements. The apparent lack of anticipation of the needs of this group of children in NHS provision leads families to feel frightened and isolated. They are given the impression that their child is uniquely difficult to manage and beyond the scope of existing services, and this then leads them to feel very uncertain about the future. Where they have the opportunity to meet families of children with similar needs they are greatly relieved and reassured. However, establishing longer term peer support is challenging because families may not have much in common other than their experiences of CAMHS.
CAMH staff are reluctant to explain the overall picture to parents and other relatives as they do not feel able to defend themselves by criticising lack of appropriate NHS provision. Families are therefore often unaware of the extreme efforts of CAMH staff, evidenced by this research, to manage with insufficient resources. As a result, families feel bewildered and can misinterpret the motives of the staff. Because of the confused messages about ongoing support and assessment, parents inevitably resort to searching the internet and any other information sources for answers about treatment, care, inpatient facilities and even diagnosis. CAMH staff may brush aside parents' views. For some, these factors leads to a breakdown of trust and many parents attempt to make complaints through the NHS, the Mental Welfare Commission or their MSPs, only to find that the slow and time-consuming nature of the complaints process can add to the sense of frustration and exhaustion.
When the young person is moved from one facility to another, parents search for reassurance and support from the next CAMH team or care team. Moving to a facility (either inpatient or residential care) which has more appropriate provision, for example, autism spectrum disorder expertise, can dramatically reduce challenging behaviour. Once a child or young person is settled within a CAMH inpatient provision or residential care the family return to some semblance of normality. However, the families still have to manage being divided from their child and having to travel long distances, and continue to talk about the impact on their own physical and mental health. Events such as birthdays or Christmas have added significance in the circumstances, and present an opportunity for the family to regain trust in professionals providing support to their child or young person.
For the child or young person themselves, the experience of requiring admission to inpatient care is evidently frightening, stressful and out of their control. It is clear that the distress of admission is greatly exacerbated by the lack of available acute facilities and appropriately trained staff. Family cohesion is threatened by the lack of appropriate care thus long term family support for the child or young person is jeopardised with huge cost implications for statutory services. When it comes to transition out of inpatient care, there are often significant questions over which statutory services will be picking up the bill (adult or child services, social work, health or education). As a result there is often a deficit in terms of information provided to the family who are left feeling confused and ill-informed about the options available for ongoing care. The lack of transparent planning with regard to transition adds to the anxiety of the family and certainly results in costly delays to discharge.