Child and Adolescent Mental Health Services: inpatient report

A3.2 Questionnaires for families/carers

This questionnaire was developed by the project group, with particular guidance from 'Kindred', an organisation providing advocacy and information on services available to children with additional support needs and their carers.

This questionnaire and an accompanying letter (see below, sections A3.2.1 and A3.2.2) were distributed to clinicians who submitted information to the survey, with a request that they personalise and forward them, with a stamped addressed envelope, to the families/carers of the patients concerned. These were only sent to families of patients who were actually admitted to hospital.

In order to preserve patient confidentiality, family questionnaires were not actively linked to the related clinicians' submissions.

A3.2.1: Parent survey letter

Dear Parent/Carer

Admissions to hospital for Scottish Children and Young People with Learning Disability and/or Autism Spectrum Disorder with mental health/behavioural difficulties

Children and young people with Learning Disability and/or Autism may experience difficulty in accessing appropriate hospital care when required for mental health and/or behavioural difficulties. The Scottish Government, Mental Welfare Commission and NHS Scotland (National Services Scotland) are carrying out a survey of Health Boards to find out how this has affected your child and family, and others in similar situations. We wish to look at the period 2010 to 2014. Health Boards are supplying us with anonymous information about all children under 18 with Learning Disability and/or Autism who have had an admission for mental health/behavioural reasons in the past 5 years, or who may have benefitted from an admission but been unable to access it.

(Clinician name), has identified your child (or the child you care for) as being suitable for inclusion in this survey and has provided anonymous information relevant to our work. They have not given us any identifiable information but have agreed to send this letter directly to you to ask for your help. We are very keen to hear about experiences of parents and carers in relation to this important issue.

We enclose a short questionnaire which we would be very grateful if you could fill in and return within 2 weeks in the stamped addressed envelope provided. You do not need to put your name on the questionnaire and your answers will not be shared in their full form with anyone outside the study group. Your answers will be put together with those of other parents/carers so that information in the final report will not be identifiable. If your child had more than one admission in the study period, we will include extra questionnaires – please complete one for each admission.

We are working with Kindred, an independent organisation providing support and advocacy for children with additional support needs. We would like to offer you the opportunity to also discuss your experiences with Claire Edwards from Kindred in more detail in person, in order to increase our understanding and improve future services. Details of how to arrange this are given at the end of the questionnaire.

We would very much appreciate your help. Your information and views will help in consideration of in-patient services for Scottish children and young people with Learning Disability and/or Autism.

We look forward to receiving your completed questionnaire. If you need help in filling in the questionnaire, or have any queries, please contact us at the above telephone number.

Yours sincerely

Katherine Collins,

On behalf of the study group:

• Katherine Collins, Nursing & Quality Advisor, NHS National Services Scotland
• Deborah Dunn, Programme Manager, NHS National Services Scotland
• Margo Fyfe, Nursing Officer, Mental Welfare Commission
• Lauren Murdoch, Head of Mental Health Unit , Scottish Government
• Dr Susie Gibbs, Consultant Psychiatrist & LD CAMHS Advisor to Scottish Government
• Claire Edwards, Trainer & Consultant, Commissioned by Kindred

A3.2.2: Parent questionnaire
About your Child
Age at admission	Under 12 12 – 15 16 – 18
Sex	Male Female
Level of learning Disability	None Mild Moderate Severe/profound Not sure If not sure, please comment:
Autism	Yes No oNot sure If not sure, please comment:
About your family at time of admission
Who usually lives at home? ( e.g. Mum, Dad, siblings, others)
Where do you live?	More than 1 hour from a major city Within 1 hour of major city In a major city
The hospital admission
What type of unit was your child admitted to? (Please fill in a separate form if admitted to more than one unit)	Specialist Children's Learning Disability Mental Health Unit adult Learning Disability unit child or Adolescent Mental Health Unit adult Mental Health Unit pediatric (children's medical) ward another (please specify)
Why did your child require admission?
How long did you have to wait for admission?
In what ways was the admission helpful?
If admission was not helpful, why not?
Do you have suggestions for improvements?
How far (in terms of travelling time) was the unit from home?	Less than 1 hour 1 – 2 hours 2 – 4 hours More than 4 hours (please specify)
Where was the admission?	Scotland other England n
How well were your child's needs understood and helped by the staff?
As an individual	Excellent Good Ok Poor Very Poor
As a child/ young person	Excellent Good Ok Poor Very Poor
As a person with learning disability (if relevant)	Excellent Good Ok Poor Very Poor
As a person with Autism (if relevant)	Excellent Good Ok Poor Very Poor
Their mental health/ behavioural needs	Excellent Good Ok Poor Very Poor
Their physical health needs	Excellent Good Ok Poor Very Poor
Their family needs	Excellent Good Ok Poor Very Poor
Their educational needs	Excellent Good Ok Poor Very Poor
Comments
What was the effect of the admission on:
Your child's emotional well-being?
Family contact?
Discharge Planning?
Transfer back home or to another placement?
How long after discharge did benefits from the admission continue?
Please tick the statement that most reflects your views	If my child needs hospital treatment I would prefer them to be in a specialist unit for children/ young people with Learning Disability/ Autism even if it is a long way from home. I would prefer my child to be in a more local hospital, even if they have to be on an adult ward, or a ward not specialist for children with Learning Disability/ Autism. Comments:

We are working with Kindred, an independent organisation providing support and advocacy for families of children with additional support needs. Web address: www.kindred-scotland.org. In order to get a fuller understanding of how admissions to hospital have affected children and their families, Kindred have asked Claire Edwards to talk with families. If you agree to take part, you can choose between meeting Claire at your house, or at another local venue, or having a telephone conversation. She will provide a report to us from her discussions with families/carers. We will not be able to identify the views of individuals from her report.

If you are happy for us to pass on your details to Kindred please complete your details here:-

Name:-

Telephone Number:-

E-mail address:-

If you do not want to give your details, but would like to contact Kindred directly to arrange to talk with Claire, please return this form to us without your details and contact Kindred via:

Sophie Pilgrim - Telephone: 0131 538 9354 or 0131 536 0360

E-mail: sophie.pilgrim.kindred@gmail.com

If you do not want to speak further about your experiences, please simply return the completed form without your contact details.

If you would like us to send you a copy of the final report please tick here and put your postal or email address here:

If you want to give more detailed answers to any questions or add any further comments please use this space (continue overleaf if required):
Thank you for your time and help in completing and returning this questionnaire.

Please return it to Kathy Collins at NHS National Services Scotland at:

NHS National Services Scotland (Area 062)
Gyle Square
1 South Gyle Crescent
Edinburgh, EH12 9EB.

If you require a stamped addressed envelope please phone Amanda Saunderson on 0131 275 6884