There was an excellent response to the study with submissions from almost all territorial Health Boards (13 out of 14) and from clinicians from a variety of services, including CAMHS, Specialist LD CAMHS, Adult LD ( ALD), Adult Mental Health ( AMH) and Paediatrics.
The survey took longer to complete than anticipated, due largely to the high numbers of submissions and telephone interviews. Reminder letters and more time were required to arrange interviews with families and to gather sufficient financial information. The wealth of quantitative and qualitative data obtained was time-consuming to organise and analyse.
Due to inclusion criteria for the study, all of those described as having no learning disability by definition had autism spectrum disorder. A small number (less than 5) of these did not have a formal autism spectrum disorder diagnosis, but autism spectrum disorder was either assumed or strongly suggested, or had a diagnosis of 'atypical autism' and was thus included.
All percentages given were rounded to the nearest whole number. Where numbers in any category were small (less than 5) and therefore there was a risk that individuals could be identified, numbers were not given, but '<5' was indicated.
A4.1.1 Data management
An excel spread sheet was created to organise data on patient admissions or alternative. Column headings reflected the questions on the clinician questionnaires and the additional qualitative themes used to guide clinician telephone interviews. A separate row was completed for each admission (or alternative), with separate rows for each part of an admission if a patient was transferred between different hospitals. This data was coded into 53 separate variables that were able to describe patient and admission characteristics. Descriptive quantitative analysis was then performed using SPSS. This also enabled qualitative information to be cross-referenced with quantitative information to identify common themes and issues, e.g. pre-admission issues for children and young people with different degrees of learning disability.
In addition to discussing the patients and situations whose information was submitted to the study, clinicians offered additional general information and opinion related to the theme of the survey. These were collated and the themes which emerged fitted well with other qualitative data from the parent/carer interviews. The information was all incorporated with qualitative information about individual patients' situations. Clinician comment and opinion as to the need for a specialist Scottish unit, its important elements and role, were used to inform the recommendations section of this report.
Answers on parent/carer questionnaires were similarly collated. Insufficient numbers were returned to allow meaningful quantitative analysis. However, much useful information was obtained and incorporated into the qualitative section of the results, along with that from parent/carer interviews.
The feedback from parent/carer interviews was collated and mapped onto the broad themes of the study as identified in the interview schedule. The responses and issues raised by the interviewees highlighted emotional impacts on families and how this then affected their perspective on the processes and nature of the provision. This impact was also reflected in comments from some of the clinicians' interviews. Additional themes were therefore added to the results section to incorporate these issues, and others, which emerged from both sets of interviews.
A4.1.2 Questionnaire submissions
4.1.2 (i) Clinician questionnaire submission results – overview
Total number of submissions from clinicians about those requiring inpatient care (within study period): 153
- 32 submissions represented transfers within an overall admission.
- 8 submissions described situations where the child or young person required admission but remained at home.
- 7 submissions described situations where they required admission but went to residential school or a prolonged respite care placement.
Of the 138 submissions that detailed periods of inpatient care:
- 41% (56) were admitted to adult mental health units (including IPCUs and forensic)
- 22% (30) to a YPU
- 18% (25) to an adult LD unit
- 7% (9) to an LD CAMHS unit (including secure provision)
- 5% (7) to a pediatric ward
- 4% (5) to the National Child Psychiatry Inpatient Unit
- < 5 to a secure YPU
- < 5 to an Autism Unit (including secure provision)
Total number of admissions to a hospital unit described in the survey: 106
- This figure defines an admission as a total admission, which may include one or more transfer within that admission
- Where an individual patient has been admitted and discharged from hospital on more than 1 occasion, these are counted separately as different admissions
Total number of patients admitted to hospital on 1 or more occasion: 84
Variation between Health Boards
Submissions were received from all except one Health Board.
Numbers of patients included in the study whose home is in each of the following Health Boards:
- 20 Grampian
- 12 Lanarkshire
- 11 GGC
- 10 Fife
- 9 Tayside
- 8 Lothian
- 7 Highland
- 5 Dumfries & Galloway
- 5 Ayrshire & Arran
- 0 to <5 Borders, Forth Valley, Shetland, Orkney, Western Isles
Grampian was unusual amongst the larger Health Boards in submitting information on a significant number of patients without learning disability (with autism spectrum disorder) who required YPU care. Other larger Health Boards focused on those who required more specialist care than available in the CAMH inpatient units in Scotland in their returns.
Excluding data for those submitting information on <5 patients:
- Highest total questionnaire submission rates proportionate to the population served came from Grampian, Dumfries & Galloway, Fife, Highland, and Tayside
- Highest reported total admission rates proportionate to the population served were in Grampian, GGC, Lanarkshire, Ayrshire & Arran, Dumfries & Galloway, and Tayside
43 clinicians submitted data to the study, from a variety of professional backgrounds.
29 were consultant psychiatrists:
- 13 from generic CAMHS
- 7 from generic adult LD services
- 5 from LD CAMHS
- 2 from adult LD forensic services
- 1 from general adult mental health services
- 1 from CAMH liaison service
8 were nurses:
- 7 from CAMHS
- 1 from adult LD services
3 were pediatricians
2 were clinical psychologists
1 was a CAMHS associate specialist psychiatrist
4.1.2 (ii) Family questionnaire submission results – overview
Family questionnaire submission results summary
17 questionnaires described 18 admissions/parts of admission for 10 children and young people
Despite small numbers, demographic and diagnostic characteristics broadly matched those of the patients described by clinician questionnaires
Children and young people were admitted to a range of units and usually had long waits for admission. The majority had to travel significant distances from home (up to 8 hours)
Staff's understanding of children and young people's needs were variable, but with clear room for improvement
Some good outcomes were reported, but also significant difficulties and negative impact on children and young people's emotional well-being. Distance from home was a major issue.
17 questionnaires were returned, (16 by families and 1 by social care staff) regarding 18 admissions (or parts of admission where the patient was transferred during an admission). The information related to 10 individual children or young people.
This section collates and summarises the information from family/carer questionnaires. More detailed qualitative comments have been incorporated into the appropriate parts of the main qualitative results sections.
Gender: 7 boys, 3 girls
Age: 5 admissions/parts of admission related to children aged under 12 years old, 4 to those aged 12-15 years old and 9 to those aged 16-18 years.
Level of learning disability: 2 did not have learning disability, 2 had mild learning disability, 4 had moderate learning disability, 1 had severe/profound learning disability and 1 was unknown.
Autism spectrum disorder diagnosis: 7 had autism spectrum disorder, 1 did not, 1 unknown.
Location of home: 1 lived in a major city, 5 within 1 hour of a major city and 4 lived more than 1 hour from a major city.
Units admitted to: Adult LD, adult mental health, LD CAMHS, YPU, National Child Psychiatry Inpatient Unit
Distance from home to the location of the admission:
Travelling time from home was (where information was given):
- <1 hour 3 admissions
- 1-2 hours 5 admissions
- 4-8 hours 5 admissions
2 admissions were to English units. These are included in the data above.
Parents were asked whether, on balance, they would prefer a specialist unit further away or a non-specialist unit close to home (if a specialist local unit was unavailable). 6 preferred a specialist unit, even if at a distance and 4 a non-specialist unit close to home. 1 parent who had had to travel a significant distance but described excellent care in a specialist unit said that their child's specialist needs overrode the challenges of travel and separation.
How long the child or young person waited for admission:
Where information was given, waiting time for admission to hospital was as follows:
- 2 waited a few days
- 2 waited several weeks
- 3 waited 2-3 months
Reasons for admission:
- severe agitation
- suicidal ideation
How well the child or young person's needs were understood and helped by staff:
The following table collates ratings from all the family/carer questionnaires
|As an individual||3||6||4||2||0|
|As a child or young person||2||4||6||3||0|
|As person with learning disability||5||1||3||3||0|
|As person with autism spectrum disorder||3||4||2||4||0|
|Mental Health/ behavioural needs||3||3||5||2||0|
|Physical health needs||2||7||3||3||0|
Effect of the admission on the child or young person's emotional well-being:
- Positives: good effect; improved; young person delighted to go in as wanted to get better; initially helpful due to medication change
- Negatives: traumatic; sometimes very upset; scared; anxious; well-being fluctuated or deteriorated; child hated separation from home (even when excellent admission otherwise)
Effect of admission on family contact:
- Parent's visits limited by distance ( e.g. twice a month)
- Siblings and grandparents often had limited or no contact
- Difficult to maintain frequent contact when admissions became prolonged
- Difficult to manage with one child in hospital and other/others at home
- For more able patients, phone and social media contact with family was helpful in ameliorating the effects of distance
A4.1.3 Interviews with clinicians
Interviews with clinicians from a range of professional backgrounds and from all Health Boards that submitted questionnaires took place between March and May 2015. Of the 43 clinicians submitting questionnaires to the survey, 37 participated in interviews by telephone or in person.
Clinicians were generally keen to talk, discussing cases in detail, and expressing their views on the need for both mental health inpatient provision and the building up of community LD CAMHS provision. Length of interviews were planned to be between ½ hour and 1 hour according to the number of submissions from the clinician. However, some clinicians required a prolonged interview or more than one interview and the longest extended to up to 3 hours in total.
A4.1.4 Interviews with families/carers
10 interviews were carried out with families and 1 with a carer. Those taking part had returned questionnaires and consented to contact, or had been contacted via existing links that Kindred had with families. All parents were telephoned and left a voicemail briefly explaining the reason for the call. This was then followed with an email with a fuller explanation, including a brief introduction to the interviewer.
One questionnaire was completed by a member of staff working in a residential setting and he was also interviewed. He identified himself as playing a key role in the care and planning for a young person primarily as a result of the ongoing mental health issues affecting the wider family.
Many of the families who responded to the request for interview were still dealing with the impact of their child's health. Understandably, the emotional impact of this was a motivation in their response, with parents who were interviewed making comments such as " I don't want any other parent to have to go through this nightmare" , " there needs to be changes and to see things improve" and "anything I can do that might make it better for other families in the future". One parent stated clearly that "it will be too late for our family but maybe our experience can help to get a facility established in Scotland for young people with complex needs as it is frankly embarrassing, among other things, to have to cross the border to get care".
On a positive note, one parent commented that the "psychiatrist has been so helpful that I am very happy to help and support this project any way I can".
Two presented themselves as 'survivors', able to describe and analyse what they and their family had been through and what they anticipated to be the next phase, in a reflective and measured way. Both identified that having strong networks of support had made a real difference and one had accessed counselling.