Child and Adolescent Mental Health Services: inpatient report

A3.1 Questionnaires used in the survey for clinicians

Questionnaire development

Questionnaires were developed by a project group and amended after comments were received from members of the LD CAMHS Scotland Network. The following survey guidance and final questionnaires can be found below in sections A3.1.1 to A3.1.4:

• 5 year survey guidance
• 5 year survey hospital admission
• 5 year survey non-hospital facility
• 5 year survey stayed at home or usual residence

Questionnaire distribution

Questionnaires and guidance were distributed as widely as possible to relevant clinicians across Scotland, including those from CAMHS, LD CAMHS, adult LD services and pediatrics. This included distribution via the following professional groups and networks (example covering email given in section A3.1.5):

1. LD CAMHS Scotland Network

2. Child and Adolescent Faculty of the Royal College of Psychiatrists in Scotland

3. Learning Disability Faculty of the Royal College of Psychiatrists in Scotland

4. Scottish Branch of the Royal College of Paediatrics and Child Health

5. CAMHS Lead Clinicians

The questionnaires and guidance were also distributed to the following email lists within Health Boards, with a request to distribute to relevant clinicians and managers (example covering email given in section A3.1.6):

1. NHS Board Chief Executives

2. NHS Board Medical Directors

3. NHS Board Nursing Directors

4. NHS Out of Area Referral

5. Departments of Paediatrics and Child Health

A3.1.1: 5 year survey of need for psychiatric admission for Scottish children & young people with Learning Disability &/or Autism Spectrum Disorder

GUIDANCE NOTES

Children and young people with Learning Disability &/or Autism Spectrum Disorder are known to have difficulty in accessing in-patient psychiatric care in Scotland. This increases with the severity of their Learning Disability, the complexity of their co-morbid mental and physical health problems and the severity of any associated 'challenging behaviour' ( e.g. self-injury, aggression, destructiveness, sexualised behaviours). Information is being gathered from a number of sources to identify the extent of the need for in-patient care for this group and the types of presentations which may require admission.

This survey aims to gather information on all those Scottish children/young people aged under 18 who have either had a Psychiatric admission in the past 5 years or required admission but were not able to access it. It will inform decisions about future provision of in-patient services for this group of children and young people.

We would be very grateful for you arranging for a survey form to be filled in for each patient from your Health Board who meets the following criteria.

Inclusion criteria

1. Aged 0-18 years

2. Diagnosis of Learning Disability &/or Autism Spectrum Disorder

3. During years 2010 – 2014 (inclusive) had one or more of the following:

a. An admission to a hospital facility of any kind for mental health/behavioural reasons

b. An admission to a non-hospital facility of any kind for mental health/behavioural reasons, where ideally a mental health admission was required

c. Remained at home/usual place of residence, where ideally a mental health admission was required

Identifying patients for inclusion

It is likely that the majority of patients who were admitted to psychiatric hospitals will be relatively easy to identify, although Health Boards will need to contact their clinicians and service managers from a variety of services to ensure none are missed. These services should include CAMHS, LD CAMHS (where this exists), Adult LD services, Child Health and Paediatrics and Adult Mental Health services.

Clinicians from within these services should also be asked to carefully consider cases where admission would have been helpful/required, had it been available. This is to ensure that 'hidden' cases are also included, acknowledging that, where suitable local/regional units are not available, alternative arrangements may be made to try and 'contain' the situation locally. We intend to gather information about these cases and assess the impact on the child/young person, their family and local services.

To identify cases, you may find it helpful to also contact clinicians from the LD CAMHS Scotland Network from your Health Board. The Network will be made aware of the study in advance. The Network representatives from each Health Board are as follows:

Ayrshire & Arran: Alan James; alan.james@aapct.scot.nhs.uk

Borders: George Murray; george.murray@selkirkhc.borders.scot.nhs.uk

Clyde: Louise Loughran; Louise.Loughran@ggc.scot.nhs.uk

Dumfries & Galloway: Dawn Renfrew; dawn.renfrew@nhs.net

Fife: Tracy Watson; tracywatson2@nhs.net

Forth Valley: Dorothy Laing; dorothylaing@nhs.net

Grampian: Dee Rasalam; adrasalam@nhs.net

Greater Glasgow: Lorna Fitzsimmons; Lorna.Fitzsimmons@ggc.scot.nhs.uk

Highland: Dr Morag Watson; morag.watson@nhs.net

Lanarkshire: Jo McCulloch; Josephine.Mcculloch@lanarkshire.scot.nhs.uk

Lothian: Gill Kidd; Gill.Kidd@nhslothian.scot.nhs.uk

Orkney: Link via Grampian rep

Shetland: Link via Grampian rep

Tayside: Halina Rzepecka; halina.rzepecka@nhs.net

Western Isles: Charlie Hill; charliehill@nhs.net

Questionnaires

3 types of questionnaire forms are provided:

(i) For patients admitted to hospital

(ii) For patients admitted to a non-hospital facility

(iii) For patients remaining at home or their usual place of residence

Please arrange for the appropriate questionnaire to be completed for each patient. These should be:

• Typed into the questionnaire form, which will expand to fit the text
• Collected together by a nominated person from each Health Board
• Returned by secure e mail to katherine.collins@nhs.net by Friday 27th February 2015
• Where one patient has had more than one discrete admission/episode requiring admission, please fill in a separate form for each admission/episode but indicate that the forms refer to the same patient
• If a patient is transferred to more than one unit (hospital/alternative) during one episode, please indicate this and repeat the information for relevant sections for each unit.
• Under costs of admission, please consider all direct and indirect costs, e.g. cost of admission itself, additional staffing, adaptations to buildings, assessments, travel and expenses costs for families and professionals.

• Please attach any more detailed information you feel it would be helpful to share about any of the patients. E.g. anonymised pre-existing reports, root cause analysis etc. from any admission/alternative.

Many thanks for your time and support with this survey

Katherine Collins, Nursing & Quality Advisor, NHS National Services Scotland

Margo Fyfe, Nursing Officer, Mental Welfare Commission

Penny Curtis, Acting Head of Mental Health & Protection of Rights Division, Scottish Government

Susie Gibbs, Consultant Psychiatrist ( NHS Fife) & LD CAMHS Advisor to Scottish Government. Please contact with any questions: susie.gibbs@nhs.net

A3.1.2: National Services Division/Mental Welfare Commission/Scottish Government 5 year survey of need for psychiatric admission for children with LD &/or Autism: (i) Hospital admission form
Health Board completing form
Year of admission
Age at admission
Sex	Male / Female
Ethnicity
Looked after child?	Yes / No (if yes, please state reason)
Health Board of Residence
Level of LD	None / Mild / Moderate / Severe / Profound
Autism diagnosis	Yes / No
Other Psychiatric diagnoses (please list)
Self-injury	Yes / No
Aggression	Yes / No
Destructiveness	Yes / No
Sexualised behaviour	Yes / No
Police involvement at any stage	Yes / No (if yes, please state reason)
Other Physical Health diagnoses (please list)
Other problems/ issues ( e.g. housing, family issues, Child Protection concerns)
Reasons for admission (please list)
Health Board (or English city/ county) of admission
No. weeks from identification of need for admission to date admitted
Admitted from	Home / hospital / residential school / other (if other, please specify)
Type of ward admitted to	LD CAMHS / Adult LD / Child Mental Health /Adolescent Mental Health / Adult Mental Health / Paediatric / other (if other, please specify)
Type of hospital	NHS / Private sector
Type of hospital facility ideally required (brief description)
Degree of security required	Standard / Low / Medium / High Was this available: Yes / No
Staff ratio required	Standard ward level / 1:1 / 2:1 / 3:1 / other (if other, please specify)
Any special adaptations required to ward
Length of admission (weeks)
RMO during admission	CAMHS / Adult LD / LD CAMHS / Paediatrician / other (if other, please specify)
Mental Health Act status	Informal / Short Term Detention / Compulsory Treatment Order / other (if other, please specify)
Discharge destination	Still an in-patient / home / another hospital / residential school / social care placement / other (if other, please specify)
Approximate total cost of admission
Contribution to total cost per agency	Health Board of origin: Health Board where admitted: NSD: Local Council (Education): Local Council (Social Work): Other (please specify):
Details of clinician available to contact for further clinical information/clarification	Name: Position: Phone number: Email address:
Details of manager available to contact for further financial information/clarification	Name: Position: Phone number: Email address:

A3.1.3: National Services Division/Mental Welfare Commission/Scottish Government 5 year survey of need for psychiatric admission for children with LD &/or Autism: (ii) Admission to non-hospital facility form
Health Board completing form
Year when need for admission identified
Age when need for admission identified
Sex	Male / Female
Ethnicity
Looked after child?	Yes / No (if yes, please state reason)
Health Board of Residence
Level of Learning Disability	None / Mild / Moderate / Severe / Profound
Autism diagnosis	Yes / No
Other Psychiatric diagnoses (please list)
Self-injury	Yes / No
Aggression	Yes / No
Destructiveness	Yes / No
Sexualised behaviour	Yes / No
Police involvement at any stage	Yes / No (if yes, please state reason)
Physical Health diagnoses (please list)
Other problems/ issues ( e.g. housing, family issues, Child Protection concerns)
Reasons for need for Psychiatric admission	(please list)
Reason/s why not admitted to hospital	(please list)
Type of hospital facility ideally required	(brief description)
Health Board (or English city/ county) of non-hospital facility
No. weeks from identification of need for admission to date admitted to facility
Admitted from	Home / hospital / residential school / other (if other, please specify)
Type of non-hospital facility	Residential school / prolonged respite care placement / other (if other, please specify)
Organisation running facility	Council / private / 3 rd Sector / other (if other, please specify)
Degree of security required	Standard / Low / Medium / High Was this available: Yes / No
Staff ratio required	Standard unit level / 1:1 / 2:1 / 3:1 / other (if other, please specify)
Any special adaptations required to facility
Length of admission	(weeks)
Mental Health input during admission	(brief description)
Legal status	Informal / Mental Health Act / Supervision Order / Guardianship / other (if other, please specify)
Discharge destination	Still in facility / home / hospital / residential school / social care placement / other (if other, please specify)
Approximate total cost of admission to facility
Contribution to total cost per agency	Health Board of origin: Health Board where admitted to facility: NSD: Local Council (Education): Local Council (Social Work): Other (please specify):
Details of clinician available to contact for further clinical information/clarification	Name: Position: Phone number: Email address:
Details of manager available to contact for further financial information/clarification	Name: Position: Phone number: Email address:

A3.1.4: National Services Division/Mental Welfare Commission/Scottish Government 5 year survey of need for psychiatric admission for children with LD &/or Autism: (iii) Stayed at home/usual place of residence form
Health Board completing form
Year when need for admission identified
Age when need for admission identified
Sex	Male / Female
Ethnicity
Looked after child?	Yes / No (if yes, please state reason)
Health Board of Residence
Level of Learning Disability	None / Mild / Moderate / Severe / Profound
Autism diagnosis	Yes / No
Other Psychiatric diagnoses (please list)
Self-injury	Yes / No
Aggression	Yes / No
Destructiveness	Yes / No
Sexualised behaviour	Yes / No
Police involvement at any stage	Yes / No (if yes, please state reason)
Physical Health diagnoses (please list)
Other problems/ issues ( e.g. housing, family issues, Child Protection concerns)
Reasons for need for Psychiatric admission (please list)
Reason/s why not admitted to hospital (please list)
Type of hospital facility ideally required (brief description)
Usual place of residence	Home / residential school / foster care / children's home / other (if other, please specify)
Any special adaptations required to physical environment
Estimated length of time that admission would have been required
Mental Health input during this time period (brief description)
Social care input during this time period (brief description)
Education input during this time period (brief description)
Legal status	Informal / Mental Health Act / Supervision Order / Guardianship / other (if other, please specify)
Still at usual place of residence?	Yes / No (if no, please state current situation)
Approximate total cost of additional support put into usual place of residence
Contribution to total cost per agency	Health Board: NSD: Local Council (Education): Local Council (Social Work): Other (please specify):
Details of clinician available to contact for further clinical information/clarification	Name: Position: Phone number: Email address:
Details of manager available to contact for further financial information/clarification	Name: Position: Phone number: Email address:

Please email completed form to: katherine.collins@nhs.net

A3.1.5: Example of covering e mail to professional groups

To Royal College of Psychiatrists LD and CAMHS Psychiatrists
Sent: 29 January 2015 14:31
Subject: 5 Year Survey of Need for Psychiatric Admissions for Scottish Children & Young People with LD&/or ASD

Dear Colleagues

With apologies for any cross-posting, I wanted to ensure that you are aware of this survey, which is being carried out by National Services Division, Scottish Govt and Mental Welfare Commission to establish the need for mental health in-patient admissions for children and young people with LD &/or ASD over the past 5 years. The attached letter, questionnaires and guidance went out to Health Boards last week and you and may have already been contacted by your managers to identify patients and supply the information required.

The information gathered by this survey will be used to inform decisions about the need for regional/national service development for this group, including the need for specialist in-patient beds. Therefore the more info we can get back the better to make sure well-informed decisions are made. It is important that it is not just patients that have accessed specialist LD CAMHS services that are included in this survey but any children or young people who meet the attached criteria.

Please could you therefore think back and identify any patients of yours who have any degree of Learning Disability and/or ASD who have had - or required but not been able to access - inpatient care in the past 5 years. Please could you ensure that questionnaires are filled in and returned for all of these. Don't worry if you don't have all the info requested by the questionnaire - we would rather have incomplete info on a larger number of patients than complete info on a small number.

Please see the attachment for guidance notes and the college website for questionnaires etc.

< http://www.rcpsych.ac.uk/workinpsychiatry/divisions/rcpsychinscotland/surveys.aspx>

I am more than happy to be contacted to clarify/discuss anything that arises.

With many thanks in anticipation.

Susie

Dr Susie Gibbs

Consultant Psychiatrist (Children and Young People with Learning Disabilities) LD CAMHS Advisor to Scottish Government Mental Health Division

A3.1.6: Covering letter to Health Boards

National Services Division	062 Gyle Square 1 South Gyle Crescent Edinburgh EH12 9EB Telephone 0131 275 6575 Fax 0131 275 7614 www.nsd.scot.nhs.uk
To: NHS Board Chief Executives NHS Board Medical Directors NHS Board Nursing Directors NHS Out of Area Referral Departments of Paediatrics and Child Health	Date 16 January 2015 Your ref Our ref 07 HSS\Spec\Mental Health Service\CAMHS\LD CAMHS\Corres\2015-10-16 Survey Ltr Direct Line 0131 275 6157 Email Katherine.Collins@nhs.net

Dear Colleagues

Psychiatric Admissions for Scottish Children and Young People with Learning Disability and/or Autism Spectrum Disorder

In December we advised Board Chief Executives, Medical Directors and Out of Area Teams of a small survey we are conducting. The survey will aim to gather information on all Scottish children or young people with Learning Disability and/or Autism Spectrum Disorder under the age of 18 who have either had a psychiatric admission in the last five years, or who have required one but have not been able to access it.

The request for information is being circulated to Board Chief Executives, Medical Directors, Directors of Nursing, senior CAMHS clinicians, senior LD clinicians and Departments of Paediatrics and Child Health. The short questionnaire should completed for each identified patient, and there will be a follow-up telephone interview to clarify any points raised, and discuss the more qualitative aspects of the cases. . It would be appreciated if the proformas for each NHS Board could be collated and returned by a nominated contact person. The information will be stored securely in NSD and analysed by Dr Gibbs. This is a relatively small patient group and we don't anticipate an onerous workload for any Board or individual. We would like this work to be completed early in 2015.

Three questionnaires and Guidance Notes are attached and I would be grateful if the appropriate questionnaire could be completed for each child or young person and returned to National Services Division using my email address Katherine.collins@nhs.net by Friday 27th February 2015.

Yours sincerely

Ms Katherine Collins

Nursing and Quality Adviser