Introduction to Core Data Set H Young People Simon Morgan Julie Marshall March 2011

Objectives To gain an understanding of all of the information required by NDTMS Clarify requirements and definitions of Core Data Set H (CDS H) Reiterate that CDS H effective from 1 April 2011 Discuss avoidable Data Quality issues

Introduction to the NTA The National Treatment Agency for Substance Misuse (NTA) is a special health authority within the NHS, established by Government in 2001 to improve the availability, capacity and effectiveness of treatment for drug misuse in England NDTMS relates to the process of collecting, collating and analysing information from and for those involved in the drug treatment sector NDTMS evidences your work and the impact of your work Numbers in effective treatment Public Health Outcomes Framework NDTMS is used to determine funding allocations

Introduction to NDTMS NDTMS was initially developed to collect data on adult substance misusers receiving specialist drug treatment services. The new ten year Drug Strategy (Drugs: Protecting Families and Communities) has highlighted the importance of creating a data set that is young person specific Core Data Set H for young people has been developed for all young peoples services and should be completed for all people accessing young peoples treatment services irrespective of age

Core Data Set H – why is it needed? Information reported to the NDTMS Young Peoples data set is used to ensure that effective specialist substance misuse treatment services are available for all young people who require them Data is used to inform local needs analysis and commissioning; inform NTA regional teams in supporting the continued development of treatment services locally At national, regional and local levels it will also provide the opportunity to collect and measure outcomes and outputs

What is specialist substance misuse treatment – YP? Young Peoples specialist substance misuse treatment is a care planned, medical, psychological or specialist harm reduction intervention aimed at alleviating current harm caused by a young persons substance misuse Interim Commissioning Guidance on young peoples specialist substance misuse services NTA 2008

Core Data Set H

Core Data Set H NDTMS core data set - reference data - Reference data is defined as (relatively) static data. Generally it is employed as a means of validating data entry and will typically be used to control the contents of drop-down lists etc. NDTMS core data set – business definitions for young people's treatment providers - Guidance for agencies on the core data set. NDTMS core data set – guidance for young persons' treatment providers - Details the latest changes and explains which services should report to NDTMS; provides relevant definitions, as well as confidentiality and consent issues and answers to frequently asked questions.

Core Data Set H NDTMS core data set - reference data NDTMS core data set – Business Definitions for YP CodeText Sort Order 1Yes 1 2No 2 98Not Known 98

Core Data Set H The Core Data Set is made up of four data entities: Client information Episode (including regional fields) Interventions Treatment Outcome Profile (TOP)

Client Information Finitial (key field) - the first initial of the clients first name Sinitial (key field) - the first initial of the clients surname DOB (key field) - the day, month and year that the client was born SEX (key field) - the sex that the client was at birth. Ethnicity - If a client declines to answer then not stated should be used. If a client is not asked, then the field should be left blank. Nationality - Country of nationality at birth (all case management systems / DET will have a drop down list box) Not stated added NB - If you put the full name in your case management system, only the initials will be submitted to NDTMS

Episode An episode of treatment is a set of interventions with a specific care plan. A client may attend one or more unique interventions of treatment during the same episode of treatment. CLIENT AGENCY 1 EPISODE Referral DateDischarge Date Modality 1 YP Harm Reduction Service Modality Start Date Modality End Date AGENCY 2 EPISODE Referral Date Modality 1 YP Psychosocial - Counselling Modality Start Date Modality End Date Modality 2 YP Psychosocial – Relapse Prevention Modality Start Date Modality End Date Discharge Date Client Treatment Journey

Episode Referral date (key field) - The date that the client was referred to the agency for this episode of treatment – for example it would be the date a referral letter was received, the date a referral phone call or fax was received or the date the client self referred Agency code (key field) - A unique identifier for the treatment provider that is defined by the regional NDTMS centres Client Reference - a unique number or ID allocated by the treatment provider to a client - this must not hold or be composed of attributers which might identify the individual. NB - The client reference is an effective way of identifying any exceptions

Episode – Consent for NDTMS Clients must give explicit informed (typically written, but can be oral) consent to share their information with NDTMS Clients should be informed about how their information is handled by the NDTMS The NDTMS Confidentiality Toolkit is found under Confidentiality Toolkit on Consent should be reviewed at the care plan review stage Values are now No person not consented; Yes person has consented Only clients who have consented to information being submitted to NDTMS will be included in numbers in treatment

Episode Previously treated - Has the client ever received structured drug treatment at this or any other treatment provider Post code - The postcode of the clients place of residence. Only the truncated postcode is submitted to NDTMS (E5 9) If a client states that they are of NFA, then this field is to be left blank

Episode – Accommodation Need YP TextComments YP living with relativeYoung person living with parents or other relatives YP Independent - settled accommodation Young person living independently in settled accommodation Young Offender Living in Secure Care Independent YP - unsettled accommodation Young person living independently in unsettled accommodation Independent YP with No Fixed AbodeYoung person living independently with No Fixed Abode YP Supported HousingYoung person living in specifically commissioned housing The accommodation need refers to the current situation (28 days prior to treatment start) of the client with respect to housing need.

Location of CLA

Episode - Parental Status Young people who are under the age of 18 years can also have parental status and should be asked about parental status TextComments All the children live with client The client is a parent of one or more children under 18 and all the clients children (who are under 18) reside with them full time. Some of the children live with client The client is a parent of children under 18 and some of the clients children (who are under 18) reside with them, others live full time in other locations. None of the children live with client The client is a parent of one or more children under 18 but none of the clients children (who are under 18) reside with them, they all live in other locations full time. Not a parentThe client is not a parent of any children under 18 Client declined to answer

Episode DAT of residence - The DAT in which the client normally resides. If NFA then for tier 3 treatment providers, the DAT of the treatment provider should be used as a proxy; and for tier 4 treatment providers, the referring DAT should be used as a proxy PCT of residence - The PCT in which the client resides. If NFA the PCT of the treatment provider should be used as a proxy Local Authority - The local authority in which the client currently resides. Due to Partnerships and local authorities not being coterminous in all cases, when the client is NFA the local authority of the treatment agency should not be used as a proxy.

Episode Problem substance no. 1 - The substance that brought the client into treatment at the point of triage Age of first use of problem substance 1 Route of administration of problem substance 1 - Inject, Sniff, Smoke, Oral or Other Drug 2 & Drug 3 - Additional substance that brought the client into treatment at the point of triage / initial assessment. No Second Drug and No Third Drug are introduced for data completeness. New drug Methylone and Mephedrone are introduced NB - Poly drug should no longer be used

Episode Referral source - Detailed list in the reference data but new YP codes are: Secure Childrens Home; Secure Training Centre; Youth Offender Institute; and YP Housing Triage date - The date that the client made the first face to face presentation to the treatment provider Care plan date - Date that the care plan was created and agreed with the client for this episode Injecting status - Is the client currently injecting; previously injected; never injected or client declined to answer? TOP Care Co-ordination - Does the treatment provider currently have care co-ordination responsibility for the client in regards to completing the TOP?

Episode Children - How many children live with the client at least part of the time? A child is a person who is under the age of 18. Young people who are under the age of 18 years can also have parental status and should be asked about parental status Data Entry Text 00 children living with client 11 child living with client 22 children living with client 0-30n children living with client 98Client declined to answer

Episode Pregnant - All sexually active woman should be asked about pregnancy Drinking days – No. of days in the 28 days prior to initial assessment the client consumed alcohol Units of alcohol - Typical number of units consumed on a drinking day in the 28 days prior to initial assessment

Episode Hep C Tested – (Yes/No/Not Asked) If Yes, then complete test date. Hep C latest test date - Date that the client was last tested for Hepatitis C. This test may be within the current treatment episode or previously to the episode. This test may be in the current treatment episode or previous to the episode If the date is not known; the 1 st of the month If the month is not known; the 1 st January of the known year

Episode Hep B vaccination count - No. of Hep B vaccinations given to the client within the current episode of treatment Hep B intervention status - Within the current treatment episode, whether the client was assessed and offered a vaccination for Hep B One vaccination Two vaccinations Three vaccinations Course completed Offered and accepted Offered and refused Immunised already Not offered Acquired immunity Assessed as not appropriate to offer

Episode Hep C intervention status codes - Within the current treatment episode, whether a client was assessed and offered a test for Hep C? Drug Treatment Health Care Assessment Date - The date that the initial healthcare assessment was completed. Offered and accepted Offered and refused Not offered Accessed as not appropriate to offer

Episode – status questions at treatment start and exit These items focus on the status of the YP coming into and exiting treatment and are an acknowledgement that young people sometimes present with complex needs and vulnerabilities that may impact on their substance misuse and that, as a consequence, they may also be engaged with a range of other targeted and specialist services.

Episode – treatment entry status YP in contact with Mental Health Services at treatment start - Is the YP currently in contact with inpatient or outpatient mental Health Services? YP in contact with YOT at treatment start - in contact with the Youth Offending Team as a result of receiving a reprimand or final warning, acceptable behaviour contract, anti social behaviour order or community sentence YP involved in self harm at treatment start - This refers to the YPs current involvement or suspected involvement in activities such as cutting, burning, banging, hair pulling or poisoning. This includes accidental or non-accidental overdose YP involved in offending at treatment start - This refers to a YPs current or suspected involvement in activities which may or may not have come to the attention of the police, YOT or LA Text Yes No Not known

Episode – treatment entry status YP involved in sexual exploitation at treatment start - This refers to a young persons current involvement, or suspected involvement in activities such as prostitution, production of pornography or age inappropriate relationships with adults YP involved in unsafe drug use at treatment start - This refers to a YPs current involvement or suspected involvement in unsafe drug and alcohol related activities. YP Lead Professional at treatment start - This refers to the professional, who as part of the CAF process has been appointed to act as a single point of contact and coordinate provision for a child and their family. YP has a CAF at treatment start - This refers to a YP who has been identified as requiring additional needs and assessed using the Common Assessment Framework Text Yes No

Episode – treatment entry status YP Frequency of use of drug 1 at Treatment Start – number of days use of drug 1 in the last 28 days YP registered with a GP at treatment start - Has the YP registered with a GP at the point of treatment entry YP a Looked After Child Text Yes No Not known CodeText Number of days used 98Client declined to answer

Episode – treatment entry status (new) YP in contact with disability services at treatment start - At the start of the current treatment episode, is the client in contact with services, which assist in the support or management of their physical or mental disability? YP engaged in unsafe sex at treatment start - This refers to a YPs current or suspected involvement in unsafe sexual activities such as unprotected vaginal, anal or oral sex Text Yes No Not known Text No Yes Not Asked

Episode – treatment entry status YP education status at treatment start Text Mainstream education Alternative education Temporarily excluded (no more than 45 days a year) Permanently excluded Persistent absentee Apprenticeship or Training Employed Not in employment or education Economically Inactive Caring Role Economically Inactive Health Issue Client Declined to Answer

Episode – treatment exit status YP Lead Professional at treatment exit - This refers to the professional, who as part of the CAF process has been appointed to act as a single point of contact and coordinate provision for a child and their family YP Frequency of use of drug 1 at Treatment Exit – number of days use of drug 1 in the last 28 days Text Yes – LP at Drug Agency Yes – LP not at Drug Agency No CodeText Number of days used 98Client declined to answer

Episode – treatment exit status YP in contact with YOT at treatment exit - in contact with the YOT as a result of receiving a reprimand or final warning, acceptable behaviour contract, anti social behaviour order or community sentence YP in Contact with Mental Health Services at Treatment exit - Is the YP currently in contact with inpatient or outpatient mental Health Services? YP involved in self harm at treatment exit - This refers to the YPs current involvement or suspected involvement in activities such as cutting, burning, banging, hair pulling or poisoning at point of discharge YP in contact with disability services at treatment exit - At the point of discharge, is the client in contact with services, which assist in the support or management of their physical or mental disability Text Yes No Not known

Episode – treatment exit status YP involved in sexual exploitation at treatment exit - This refers to a young persons current involvement, or suspected involvement in activities such as prostitution, production of pornography or age inappropriate relationships with adults YP involved in unsafe drug use at treatment exit - This refers to a YPs current involvement or suspected involvement in unsafe drug and alcohol related activities. YP has a CAF at treatment exit - This refers to a YP who has been identified as requiring additional needs and assessed using the Common Assessment Framework Text Yes No

Episode – treatment exit status YP involved in offending at treatment exit - This refers to a YPs current or suspected involvement in activities which may or may not have come to the attention of the police, YOT or LA YP registered with a GP at treatment exit - Has the YP registered with a GP since the point of treatment exit YP engaged in unsafe sex at treatment exit - This refers to a YPs current or suspected involvement in unsafe sexual activities such as unprotected vaginal, anal or oral sex Text Yes No Not known Text No Yes Not Asked

Episode – treatment exit status YP sexual health interventions at treatment exit - At the point of discharge, has the YP had a sexual health intervention? YP met goals agreed on care plan at treatment exit - Has the YP met the main goals of their care plan at treatment exit Text Yes No Inappropriate question Text Yes No

Episode – Discharge Discharge Date - The date that the client was discharged ending the current structured (Tier 3/Tier 4) treatment episode If a client has had a planned discharge then the date agreed within this plan should be used If a clients discharge was unplanned then the date of last face to face contact with the treatment provider should be used If a client has had no contact with the treatment provider for two months then for NDTMS purposes it is assumed that the client has exited treatment and a discharge date should be returned at this point using the date of the last face to face contact with the client

Episode – Discharge Codes TextComments Treatment completed – drug-free The client no longer requires structured drug treatment interventions and is judged by the clinician not to be using heroin (or any other opioids) or crack cocaine or any other illicit drug Treatment completed – alcohol-free The client no longer requires structured Alcohol interventions and is judged by the clinician and is judged by the clinician to no longer be using alcohol Treatment completed – occasional user (not heroin or crack) The client no longer requires structured drug treatment intervention and is judged by the clinician not to be using heroin (or any other opioids) or crack cocaine. There is evidence of use of other illicit drug use but this is not judged to be problematic or to require treatment Treatment Completed – occasional user (alcohol) The client no longer requires structured Alcohol treatment interventions, there is evidence of alcohol use but this is not judged to be problematic or to require treatment

Episode – Discharge codes TextComments Transferred – Not in custody A client has finished treatment at this provider but still requires further drug / alcohol interventions and the individual has been referred to an alternative non- prison provider for this. This code should only be used if there is an appropriate referral path and care planned structured drug treatment pathways available Transferred – In custodyA client has received a custodial sentence or is on remand and a continuation of structured treatment has been arranged. This will consist of the appropriate onward referral of care planning information and a two way communication between the community and prison treatment provider to confirm assessment and that care planned treatment will be provided as appropriate

Incomplete – Dropped Out The treatment provider has lost contact with the client without a planned discharge and activities to re-engage the client back into treatment have not been successful Incomplete – Treatment withdrawn by provider The treatment provider has withdrawn treatment provision from the client. This item could be used, for example, in cases where the client has seriously breached a contract leading to their discharge; it should not be used if the client has simply dropped out Incomplete – Retained in custody The client is no longer in contact with the treatment provider as they are in prison or another secure setting. While the treatment provider has confirmed this, there has been no formal two way communication between the treatment provider and the criminal justice system care provider leading to continuation of the appropriate assessment and care-planned structured drug / alcohol treatment Incomplete – Treatment commencement declined by the client The treatment provider has received a referral and has had a face to face contact with the client after which the client has chosen not to commence a recommended structured drug / alcohol treatment intervention Incomplete – Client diedDuring their time in contact with structured drug / alcohol treatment the client died

Episode – Discharge destinations Discharge destination - The lead agency that the treatment provider has referred a young person back or onto once the treatment episode has been completed TextComments Back to Referrer refers to a young person, who at the end of the treatment episode is referred back to the lead agency that originally referred them into specialist treatment Generic Childrens Services refers to a young person, who at the end of the treatment episode is referred onto Children and Family, Child Looked After or Universal Education services. See APPENDIX D for a more detailed description of Children and Family, Child Looked After and Universal Education Targeted Youth Support refers to a young person, who at the end of the treatment episode is referred onto services providing prevention, early intervention or support for vulnerable young people. This includes generic youth services providing Information, Advice and Guidance, and targeted services such as Connexions and Positive Activities for Young People

Lead Professional refers to a young person, who at the end of the treatment episode is referred onto a Lead Professional. As part of the CAF process a lead professional takes the lead to coordinate provision and acts as a single point of contact for a child and their family when a range of services are involved and an integrated response is required Alternative Education refers to a young person, who at the end of the treatment episode is referred onto education services for young people who cannot access universal education provision for any reason. Childrens Mental Health Services refers to a young person, who at the end of the treatment episode is referred onto inpatient or outpatient Child and Adolescent Mental Health Services. This includes referrals from mental health services that work across the age range (i.e.16-25) such as early interventions teams Crime Prevention refers to a young person, who at the end of the treatment episode is referred onto services working with young people identified as at risk of offending and who are not due to attend court and are not currently under sentence such as YIPs, YISPs or any arrest referral schemes in operation Episode – Discharge destinations (cont)

TextComments Accommodation Services refers to a young person, who at the end of the treatment episode is referred onto accommodation services specifically commissioned to meet the needs of young people such as supported housing Other YP Treatment Service refers to a young person, who at the end of the treatment episode is referred onto another young persons specialist treatment service Adult Treatment Services refers to a young person, who at the end of the treatment episode is referred onto services providing drug or alcohol treatment services predominantly for those aged 18 or over. This includes needle exchange programmes and other services to address adult substance misuse No onward referral refers to a young person who, due to unforeseen circumstances, is not referred back or onto other services at the end of the treatment episode No referral required refers to a young person, who at the end of the treatment episode does not require an onward referral

Intervention A client may have more than one treatment intervention running sequentially or concurrently within an episode Only tier 3 and 4 interventions are submitted to NDTMS and are counted towards numbers in effective treatment

Intervention Treatment Intervention (key field) - The treatment intervention a client has been referred for or has commenced within this treatment episode TextTier YP harm reduction service3 YP specialist pharmacological intervention 3 YP non structured intervention2 YP Psychosocial - counselling3 YP Psychosocial – Cognitive Behavioural Therapy 3 YP Psychosocial – Motivational Interviewing 3 YP Psychosocial – Relapse Prevention 3 YP Psychosocial - family work3

Intervention Date referred to intervention (key field) - The date that it was mutually agreed that the client required this treatment intervention. For the first intervention in an episode this should be the date that the client was contacted and agreed to a referral into the treatment system for a specialist substance misuse treatment intervention. The date a referral letter or fax was received should not be recorded as the date that the client was referred to the intervention. For subsequent interventions it should be the date that both the client and the key worker agreed that the client is ready for this intervention.

Intervention Date of First Appointment Offered for Intervention - The date of the first appointment offered to commence this intervention. This should be mutually agreed to be appropriate for the client Intervention Start Date - The date that the stated treatment intervention commenced i.e. the client attended for the first appointment Intervention End Date - The date that the stated treatment intervention ended. If the intervention has had a planned end then the date agreed within the plan should be used. If it was unplanned then the date of last face to face contact date within the intervention should be used

Intervention YP treatment being delivered in a specific residential placement Intervention exit status - Whether the exit from the treatment intervention was planned or unplanned TextComments Mutually agreed planned exit Clients unilateral unplanned exitAlso used when client died Intervention withdrawn Text NoYes – Detox CAMHS Patient Yes – Dedicated YP detox and rehab Yes – Detox Adult Ward Yes – Paediatric hospital detox Yes – In Reach Community Detox Yes – OtherYes – In Reach Psychosocial

Treatment Outcome Profile - TOPs The implementation of the Treatment Outcomes Profile (TOP) in routine clinical practice began from 1 October 2007; its completion and submission via the National Drug Treatment Monitoring System (NDTMS) is requested for all clients (16 and over) accessing tier 3, and 4 structured drug treatment The TOP consists of a short set of simple questions that focus on the four key areas (substance use, injecting behaviour, criminal activity, health and social functioning) that are used to judge improvement during and after treatment. Outcomes from treatment are evidenced by looking at changes in the behaviours recorded over time It is requested that the TOP be completed with all clients at the start of their first treatment modality (Treatment Start TOP) and then around every 26 weeks throughout the treatment journey as part of the care plan review process (Review TOP) and at treatment exit (Treatment Exit TOP)

Treatment Outcome Profile - TOPs TOP date (key field) - All outcome status submitted in this section of the data - set will be associated and stored as being the status as of this date. Note: TOP data should only be collected for young people aged 16 and over.

Treatment Outcome Profile - TOP There are 4 TOP treatment stages Text Treatment Start Review Treatment Exit Post-Treatment Exit

TOPs - Substance use in the last 28 days Alcohol Use - Number of days in previous 28 days that client has used alcohol Opiate Use - Number of days in previous 28 days that client has used heroin Crack Use - Number of days in previous 28 days that client has used crack Cocaine Use - Number of days in previous 28 days that client has used powder cocaine Amphetamine Use - Number of days in previous 28 days that client has used amphetamines Cannabis Use - Number of days in previous 28 days that client has used cannabis Other Drug Use - Number of days in previous 28 days that client has used other problem drug

TOPs - Injecting risk behaviour in the last 28 days IV Drug Use - Number of days in previous 28 days that client has injected non prescribed drugs Sharing - Has client shared needles or injecting paraphernalia in last 28 days?

TOPs - Crime in the last 28 days No. of days in previous 28 days that client has been involved in shop theft No. of days in previous 28 days that client has been involved in selling drugs Has client has been involved in theft from or of vehicle, property or been involved in fraud in last 28 days (Y/N) Has client committed assault/violence in last 28 days (Y/N)

TOPs - Health and social functioning Psychological Health Status - Self Reported Score 0-20 Number of days in previous 28 days that client has had paid work Number of days in previous 28 days that client has attended college/education system Has client had acute housing problem (been homeless) in last 28 days Has client been at risk of eviction within past 28 days Physical Health Status - Self Reported Score 0-20 Quality of Life - Self Reported Score 0-20

TOP treatment start – When? For a completely new treatment journey. The client has not received tier 3 or 4 treatment at another agency 21 days before starting at the new agency TOPs should be completed 2 weeks either side of the clients first tier 3 or 4 modality start

TOP review – When? Using the modality start date TOP as an anchor point, the review TOP should be completed at least every 26 weeks.

TOP treatment exit – When? Treatment exit TOPs should be completed up to 2 weeks before and up to 2 weeks after the clients discharge date Treatment exit TOPs should be conducted when the client leaves the treatment system regardless of when the last review TOP was conducted Treatment exit TOPs can be carried out over the telephone if the client does not attend their last appointment

TOP post treatment exit – When? After the client has left the treatment system they can be contacted to review how they are getting on. The Post Treatment Exit TOPs can be completed whenever it is suitable for the client and the Key Worker. This should be approximately 3 months after the clients discharge date

TOP key points

Regional fields Injected in the last 28 days Ever shared (heroin only paraphernalia) Referred to hepatology Previously Hep B infected: Hep C positive:

Employment Status Codes Text Regular EmploymentNot receiving benefits Pupil/StudentUnpaid voluntary work Long Term Sick/ Disabled Retired from Paid Work HomemakerNot stated Unemployed and Seeking Work Other Not Known

Data Quality Good quality data is data which provides the most accurate picture of a providers work NDTMS figures are used to determine funding and establish whether a partnership or agency is meeting its targets; it is important to have accurate data There is no acceptable level for data quality; any errors in data need to be resolved

Data Quality There are three main causes of data quality problems: User error Changes to data; when changes are made to key fields, duplicates are created System error; it is important for software providers to stay up to date with changes in the dataset, and for agencies to report any software issues promptly to both suppliers and NDTMS

Data Quality When a provider submits a file, a validation is performed, the file must score 100% for both data load and data quality before it can be submitted

Data Quality

Core Data Set H – Key Fields

Further guidance NDTMS Data Set – Reference Data NDTMS Data Set – Business Definition for Young Peoples Treatment Providers NDTMS Core Data Set – Technical Definitions