learning disability census awareness events june – july 2014
TRANSCRIPT
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Programme• Context• Census 2013• Thematic analysis• Clinical implications• Regulatory impact• Discussion of issues
–Utility of the data–Planning to improve care?
• Census 2014• Data in the longer term• Working with local areas
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Timings Item Speaker13.00 – 13.10 Arrival and refreshments
13.10 – 13.15 Welcome, background and context for 2014 Census
Zawar Patel, DH
13.15– 13.40 Learning Disability Census 2013 – Key findings and data quality considerations
Robert Cavalleri, HSCIC
13.40 – 14.05 Thematic analysis Gyles Glover, PHE14.05 – 14.30 Clinical implications concerning the
quality of care and practiceJohn Devapriam, Leicestershire Partnership NHS Trust
14.30 – 14.55 Regulatory impact, census data usage, future uses and practice change
Giovanna Maria Polato, CQC
14.55 – 15.05 Break 15.05 – 15.35 Group discussion
Are the data helpful? How have you used the data? How will you use the data?
All
15.35 – 16.00 Technical aspects of delivery – How to engage effectively with the Learning Disability Census 2014
Catherine Faley, HSCIC
16.00-16.30 Introduction to the Mental Health and Learning Disability Data Set
Nick Bridges, HSCIC
16.30-16.45 Winterbourne View Joint Improvement Programme: Change, progress and the locality context
Joint Improvement Board Representative
16.45-16.50 Summary and Close Zawar Patel
Zawar Patel
Learning Disability Policy LeadDepartment of Health
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Transforming care
• Department of Health’s Post-Winterbourne View Programme
• Started in December 2012• Partnership working across the health and social care
system• Engagement with self-advocates, family carers and
third sector organisations
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Concordat: Programme of Action
• Some key aims:– Improving the safety and quality of care– Ensuring provision of local, personalised services– Avoiding unnecessary inpatient stays and keeping
people safe while in hospital– Commissioners to develop and maintain registers
of people with a learning disability– Commissioners to review identified people’s care
and if appropriate move individuals to community settings
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Learning Disability Census• ‘Audit’ of current inpatient services for people with
challenging behaviour to take a snapshot of provision, numbers of out of area placements and lengths of stay
• Learning Disability Census collecting data from providers to deliver this commitment– First census - 30 September 2013 to establish baseline – Second census - 30 September 2014 to check progress
• Data published to show national and local situation• NHS England collecting data from commissioners
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Census coverage – who is included?
The in-scope definition is:
"The Census will consider inpatients receiving treatment / care in a facility registered by the Care Quality Commission as a hospital operated by either an NHS or independent sector provider. The facility will provide mental or behavioural healthcare in England. Record level returns will reflect only inpatients or individuals on leave with a bed held vacant for them at midnight on 30/09/14.The individual will have 'a bed' normally designated for the treatment / care of people with a learning disability or will have 'a bed' designated for mental illness treatment / care and will be diagnosed or understood to have a learning disability and / or autistic spectrum disorder."
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National policy drivers• Putting Patients First: NHS England’s business plan
2014/15 to 2016/17• NHS England Mandate• Care Quality Commission regulatory and inspection
regime• Learning Disability Programme Board
Robert CavalleriSpecialist Learning Disabilities
Project Lead
Health and Social Care Information Centre
Learning Disability Census (2013)
Key findings and data quality considerations
Why is it important? Distance from homeDecember 2013:• 18% staying in wards >
100km from residential postcode.
• In the South West: 53% > 100km from home
• South West, South East and Yorkshire and the Humber are net exporters
Duration of stay:
• 60% inpatients for a year or more• 18% inpatients for 5 years or more• Length of stay varied with age
– Under 18s: 45% for 3 months or less– Over 65s: 38% for 5 years or more
Varied stay provision:
• Overall 76% in wards with focused learning disability provision
• 20% in mental health facilities• Substantially below this proportion in
Yorkshire and Humber: 62%London: 60%South West: 41% (but 44% in mental
health wards and 14% in other wards)
Use of medication:
April 2014:• 68% receiving antipsychotic medication
… 93% of these on a regular basis• Is this used for the treatment of psychotic
behaviour or behavioural management?• Positive and proactive care…?
Incidents while in care
• 57% subject to AT LEAST ONE of self harm, an accident, physical assault, hands on restraint or seclusion
• This applied proportionately more to females than males in every category
Restricted liberty
• 78% subject to the Mental Health Act 1983… 99.5% subject to longer term orders
• 22% informal patients• 1% were subject to a Deprivation of Liberty
(MCA DoL) safeguard
Planning for care
• 46% with a care plan but without a discharge plan
• 5% with a delayed discharge• 29% were working towards or had a discharge
placement identified• Mansell (2007) suggested a quarter of people
in A & T units “have finished treatment but presumably have nowhere to go”..
Cost of care• For 86% care cost between £1,500 and £4,999
per week• For 40% costing between £2,500 and £3,499• For 11% costs over £4,500• For 20% of those staying > 100km from home -
costs were >£4,500• For 34% staying within 10km costs were <
£2,500• Who has done the rough calculation..?
Data Quality - challenges
• 2 providers missed the (extended) deadline• 28% missing or invalid post code data (nearly
¾ attributable to 9 providers)• Date of birth: a 16% decrease in those initially
reported as being <18 – and 45- impacted reporting on Q36 intended age range of ward..highly contentious area.
• Gender• Typically high validity
Data Quality – opportunities for the future
• 100% returns - lead in is much longer• Post code data - opportunity to prepare well in
advance for longer stay inpatients• Date of birth: fundamental data quality
requirement - • Gender - • Validity - some scope for improvement• System validations & better DQ at upload
Coverage
• Returns from 58 NHS and 46 independent service providers on behalf of 3,313 people.
• Of these 3,257 met inclusion criteria but 7 excluded as admitted after Census date.
• Total = 3,250 (cf ‘Count me In’ 3,376 service users on 31/03/2010)
Completeness of postcode data
no. %
910 100.0
Provider code Provider name
NMV PARTNERSHIPS IN CARE LTD 174 19.1
NV2 THE HUNTERCOMBE GROUP 110 12.1
NR6 ST. LUKE'S HEALTH CARE 93 10.2
NES LIGHTHOUSE HEALTHCARE LIMITED 66 7.3
RX3 TEES, ESK AND WEAR VALLEYS NHS FOUNDATION TRUST 61 6.7
NTN PRIORY GROUP LIMITED 44 4.8
RWR HERTFORDSHIRE PARTNERSHIP UNIVERSITY NHS FOUNDATION TRUST 39 4.3
NTT CAMBIAN HEALTHCARE LIMITED 36 4.0
NYA ST ANDREW'S HEALTHCARE 29 3.2
258 28.4
England
All service users where providers supplied 'other' or 'invalid' postcodes of residence
All other providers (95)
Service users
numbers / percentages
• 910 records (28%) had missing or invalid ‘ZZ99’ postcode• 61 (59%) of providers affected; 72% submitted by 9 providers• PDS tracing improved DQ to 2.2% missing or invalid
Data quality of date of birth (DOB) field• 25 records were submitted with the same DOB and admission date.• Analysis of the quality of submitted DOB information using the HSCIC NHS number
tracing process suggested that date of birth was inaccurate for 205 of the 3,250 valid Census records.
• Taking into account ‘movement’ between age bands, the net differences between our published figures and those held centrally by the NHS for the service users in the LD Census were:
Service users by age band as published and after further tracing
Source: Learning Disability Census 2013
RecordsRecords
after tracing
Difference
no. no. no.
Under 18 185 155 -3018 - 24 666 665 -125 - 34 921 921 035 - 44 616 609 -745 - 54 566 559 -755 - 64 225 225 065 and over 71 71 0Unable to trace 45 +45Overall 3,250 3,250 0
Ageband
Data quality of gender field• We also looked at the quality of submitted gender information using the tracing
service.• Taking into account ‘movement’ between groups, the net differences between our
published figures and those held centrally by the NHS for the service users in the LD Census were:
Service users by gender as published and after further tracing
Source: Learning Disability Census 2013
RecordsRecords
after tracing
Difference
no. no. no.
Female 824 818 -6Male 2,424 2,387 -37Not known/Unable to trace 2 45 +43Grand Total 3,250 3,250 0
Gender
Validity measures
• We also tested validity of key patient demographic measures within the Learning Disability Census dataset. Overall validity was high with:– 97% of birth dates being valid;– Almost 100% (99.9%) of genders being valid;– 96% of ethnicities being valid.
Key elements moving forward
• Census 2014..capturing change • Assuring transformation..triangulation• MHLDDS v1.0..first steps, parity of esteem• MHLDDS v2.0..
– Consideration of the above to…• Move to business as usual
LD census – some themes
Ian Brown and Gyles Glover
Outline
• Headline observations
• What goes with what?
• Key groups of patients
• Comparison with Assuring Transformation data
Headline observations
Trends since Count-me-In 2010
51%
12%
19%
12%
6%Less than 3 months (n=83)
3 to 6 months (n=19)
6 to 12 months (n=31)
1 to 2 years (n=19)
2 to 5 years (n=9)
Length of stay at time of census for children and young people
51%
12%
19%
12%
6%Less than 3 months (n=83)
3 to 6 months (n=19)
6 to 12 months (n=31)
1 to 2 years (n=19)
2 to 5 years (n=9)
Specifically worrying groups for Children and Young People – i. Relatively long stayers
1%
9%
7%
21%
13%
30%
19%
Same postcode for residenceand hospital (n=1)
Less than 10km (n=15)
10 to 20km (n=11)
20 to 50km (n=34)
50 to 100km (n=21)
100km or more (n=49)
Missing (n=30)
Distance of hospital from home for children and young people
1%
9%
7%
21%
13%
30%
19%
Same postcode for residenceand hospital (n=1)
Less than 10km (n=15)
10 to 20km (n=11)
20 to 50km (n=34)
50 to 100km (n=21)
100km or more (n=49)
Missing (n=30)
Specifically worrying groups for Children and Young People – ii. far from home (though 30 uncertain)
Prevalence of IP care for children and young people by region of residence
0 0.5 1 1.5 2 2.5 3 3.5 4 4.5
North East
North West
Yorkshire and The Humber
East Midlands
West Midlands
East of England
London
South East
South West
England
Inpatients per 1,000 people with learning disability
Large and inexplicable variation between North East and the rest of the country
Length of stay and number of learning disability census patients on site
0.00
0.25
0.50
0.75
1.00
Pro
por
tion
of p
atie
nts
0 5 10 15
Length of stay at census, years
1 to 5
6 to 10
11 to 25
26 to 50
More than 50
Larger hospital sites are associated with longer stays – even after allowance for other factors
Distance from home and length of stay at census
0.00
0.25
0.50
0.75
1.00
Pro
por
tion
of p
atie
nts
0 50 100 150 200
Distance from home, km
Less than 3 months
3 to 6 months
6 to 12 months
1 to 2 years
2 to 5 years
5 to 10 years
10 years or more
Further from home is associated with longer stays - even after allowance for other factors
0 5 10 15 20 25 30
North East
North West
Yorkshire and The Humber
East Midlands
West Midlands
East of England
London
South East
South West
England
Inpatients per 1,000 people with learning disability
Prevalence of inpatient care for adults with learning disability by region of residence
Large and inexplicable variation between regions - see North East and South West
Prevalence of IP care for adults by RCPsych LD bed classification
0 5 10 15 20 25 30
North East
North West
Yorkshire and TheHumber
East Midlands
West Midlands
East of England
London
South East
South West
England
Inpatients per 1,000 people with learning disability
Secure forensic
Acute learningdisability
Generic acute mentalhealth
Forensic rehabilitation
Complex continuingcare and rehabilitation
Other beds includingneuropsychiatric
Missing or invalid data
Large variations: North East - more secure, acute and forensic rehab. East and West Midlands – large proportion unclassifiable
Prevalence of inpatient care for adults with learning disability by care plan details
0 5 10 15 20 25 30
North East
North West
Yorkshire and TheHumber
East Midlands
West Midlands
East of England
London
South East
South West
England
Inpatients per 1,000 people with learning disability
Currently notdischargeable due tomental illness
Currently receiving activetreatment plan, dischargeplan not in place
Working towardsdischarge to identifiedplacement, or dischargeplan in place
Requires indefiniteinpatient care forbehavioural needs
Requires indefiniteinpatient care for physicalneeds
No onward placementavailable, delayedtransfer of care
Large variation: North East more active treatment no discharge plan, and more blocked transfers
What goes with what?
Factors we explored in association with longer stay lengths
Used 2 cut points – 2years and 5 years
What predicts which people will have stayed longer?
Gender: vs Male Ward security - vs general (non-secure)Female Low secure
Age: vs 18-34 Medium secure35 to 64 High secure65 to 110 Size of ward site - vs 1 to 5 patientsUnknown 6 to 10
Ethnicity: vs all specified groups 11 to 25Not stated 26 to 50
Reasons for hospital admission - each present vs absent
More than 50Distance from home vs <10km
Mental illness Recorded as live at hospLearning disabilities 10 to 19.9kmChallenging behaviour 20 to 49 kmPersonality disorder 50 to 99 kmASD 100 km or more
Disabilities present MissingLearning disabilities Vs 5 episodes or fewerASD 6 or more episodes of self harmVisual impariment Any SeclusionHearing impairment Vs NHSMobility impairment Independent sector
Variables we tried – Logistic regression, so all together.
Factors associated with longer stay lengths (with odds ratios )
Stay length to census 2 years of more 5 years of more
Gender: vs Male Female 0.6x Female 0.6x
Age: vs 18-34
Age 35 to 64 1.6x Age 35 to 64 2.5x
Age 65 to 110 3.6x Age 65 to 110 5.7x
Unknown 27.4x Unknown 17.9xEthnicity: vs all specified groups
Not stated 0.1x Not stated 0.1x
Ward security - vs general (non-secure)
Low secure 0.7x
Medium secure 0.5x
High secure 5.0x High secure 2.4x
Size of ward site - vs 1 to 5 beds
26 to 50 beds 1.7x
More than 50 beds 3.7xMore than 50 beds 2.7x
Distance from home vs <10kmRecorded as living at hospital 4.4x
Recorded as living at hospital 5.2x
Vs No seclusion Any Seclusion 0.7x
Vs NHS Independent sector 1.9x
Factors we explored in association with Adverse events
6 or more episodes of Seclusion, Hands-on Restraint, Assault or Accidents
What predicts which people will have these experiences?
Gender: vs Male Ward security - vs general (non-secure)Female Low secure
Age: vs 18-34 Medium secure35 to 64 High secure65 to 110 Size of ward site - vs 1 to 5 patientsUnknown 6 to 10
Ethnicity: vs all specified groups 11 to 25Not stated 26 to 50
Reasons for hospital admission - each present vs absent
More than 50Distance from home vs <10km
Mental illness Recorded as live at hospLearning disabilities 10 to 19.9kmChallenging behaviour 20 to 49 kmPersonality disorder 50 to 99 kmASD 100 km or more
Disabilities present MissingLearning disabilities Vs 5 episodes or fewerASD 6 or more episodes of self harmVisual impariment Any SeclusionHearing impairment Vs NHSMobility impairment Independent sector
Variables we tried – Logistic regression, so all together.
Variable Seclusion Restraint Assault AccidentsAge: vs 18-34 35 to 64 (0.6x) Ethnicity: vs all specified groups
Reasons for hospital admission - each present vs absent
Challenging behaviour (2.2x)
Challenging behaviour (3.6x)
Personality disorder (0.5x)
Disabilities present
Learning disabilities (3.3x)
ASD (1.9x)
Mobility impairment (3.9x)
Ward security - vs general (non-secure)
Medium secure (3.5x)
Size of ward site - vs 1 to 5 beds 11 to 25 beds (4.3x)
Distance from home vs <10km 50 to 99 km (2.2x)
Vs 5 episodes or fewer6 or more episodes of self harm (10.6x)
6 or more episodes of self harm (8.8x)
6 or more episodes of self harm (4.2x)
6 or more episodes of self harm (4.9x)
Vs NHS Independent sector (1.7x)
Factors associated with Adverse events
Some problem groups
Problem group 1 – Stay length and discharge problems
LOS more than 5 years OR Ready for discharge but no onward placement OR no home address known
Number of in
patients% in problem
group 1Number in
problem group 1North East 382 23.0 88North West 427 15.5 66Yorkshire / Humber 255 9.0 23East Midlands 500 13.8 69West Midlands 351 13.1 46East of England 553 28.4 157London 250 10.0 25South East 285 27.0 77South West 78 15.34 12Total 3081 18.3 563
Problem group 2 – management concerns
(LOS more than 2 years AND frequent restraint or seclusion (>10 times in 3 months)) OR(LOS more than 2 years AND Regular antipsychotic use without mental illness as a reason for admission)
Number of in
patients% in problem
group 2Number in
problem group 2
North East 382 17.0 65
North West 427 10.5 45
Yorkshire / Humber 255 9.4 24
East Midlands 500 19.2 96
West Midlands 351 13.1 46
East of England 553 19.0 105
London 250 4.8 12
South East 285 10.2 29
South West 78 9.0 7
Total 3081 13.9 429
Independent compared with NHS
Problem 1 (discharge) – no difference
Problem 2 (care management) NHS 9%, Independent 20%
Comparison with Assuring Transformation data
• LS Census total: 3,250
• Assuring Transformation March 2014 total: 2,615
• Difference is 635 people (20% of Census figure)
• Census reports lack valid commissioner in 566 (17%)
• So finding (from 2010 Count-me-In) of >500 people with no active commissioner is supported
Conclusions
Priority groups for Commissioners:
• Children and young people long stay or far from home
• People with long stays
• People far from home
• People with no known commissioner or home address specified as hospital
• People in larger units
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Dr John Devapriam
Consultant Psychiatrist in Intellectual Disabilities
Extent of the Issue (in England)53,493,700
(population of England)
1,198,000(people with LD)
900,000(Adults with LD)
298,000(Children with LD)
191,000 (21%)Open to LD services
3035 (0.3%)In in-patient units
Tiered Model of Care
Tier 4
Tier 3Highly specialised element of community LD services
Tier 2General community LD services
Tier 1Enabling Primary Care and other mainstream services
Community services (187,750)
In-patient services(3035)
Tier 4
Cat 1High Secure
Category 1 Medium Secure
Category 1 Low Secure
Category 4 / 5
Category 2 / 3
Community
1. Risk2. A&T
LD Census 2013
Cat 1High Secure
Category 1 Medium Secure
Category 1 Low Secure
Category 4 / 5
Category 2 / 3
Community
1780
1470
73
512
1195
Antipsychotic use
PWLD
Physical MI & PDLD
(cause of)ASD Offending behaviour
CB PATO, PATP, VATO, AA,
Fire-setting, Sex Offences
Antipsychotic use (Deb, 2007)
• Gagiano 2005• Vanden Borre 1993• Tyrer 2009EC1• Malt 1995• Zarcone 2001EC2• La Malfa 2001, Boachie 1997, • Lott 1996, Janowsky 2003, La Malfa 2003• Talayasingam 2004EC3
Good prescribing practice
• Consider as part of holistic approach to treatment (Psychological & Social)– shared decision with patients/carers
• Identify target symptoms and diagnose – licensing issues
• Follow available guidance• Rationalise use (IP Vs Community)• Monitor for SEs and measure treatment response• Withdraw if not working – avoid therapeutic nihilism• Role of MDT….Peers are your check
Restrictive Practices (1)
• Last resort?• Types
– Mechanical– Chemical – Physical – Environmental
• Ongoing improvement in practice
Restrictive Practices (2)
• Good practice – care planned intervention– Prediction, prevention, intervention, post
intervention• Reporting procedures• Triangulation of physical, environmental and
chemical restraint incidents• Correlate with baseline measures of complexity
/ intensity• Technique ….
Conclusion
• Information essential for improving practice (bench marking / trend analysis)
• Needs interpreting / debating – to influence policy in a wider sense crossing systemic boundaries
• Providers (clinicians too!) – clinician ownership of this national data
• More robust research needed – ethical dilemma?
Tier 4
Cat 1High Secure
Category 1 Medium Secure
Category 1 Low Secure
Category 4 / 5
Category 2 / 3
Community
1. Risk2. A&T
Giovanna Polato
Analyst Team Leader – Mental Health, Learning Disability and
Community Intelligence Monitoring
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Using data for regulatory inspections
Changes to Registration:• July 2013 - CQC strengthened registration of providers of
services for people with learning disabilities
Changes to assessment of leadership and corporate responsibility in service providers:• More clarity about the service providers intend to offer• Changes to how we assess both providers and managers.
Providers need:• Systems in place to quality assure the services they intend to
provide• Stronger tests in place for all providers by 2014
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Using data for regulatory inspections
Specialist mental health services:Consultation (closing 04/06) http://www.cqc.org.uk/public/get-involved/consultations/consultation-how-we-regulate-inspect-and-rate-services#Handbooks
• To find out what people think about how we're planning to change the way we regulate, inspect and rate care services. Changes include:o what we look at on an inspection.o how we judge what 'good' care looks like.o how we rate care services to help judge and choose care.o how we use information to help us decide when and where we inspect.
• Provider handbookhttp://www.cqc.org.uk/sites/default/files/20140407_mh_provider_handbook_consultation__final_for_web.pdf
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Using data for regulatory inspections
Elements derivable from LD Census:Domain: Safe:• Notable events and incidents• Safety indicatorsDomain: Effective• LD Activity MHLDDS Domain: Responsive• Delayed Transfers of Care Domain: Well-led• LD Activity MHLDDS
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Using data for regulatory inspections
KLOEs – Key Lines of Enquiry
Domain: Well-led• Do the governance arrangement ensure that responsibilities are clear, quality and
performance are regularly considered and risks are identified, understood and managed?
• What good looks like: Data and notifications are submitted to external bodies as required
• Prompt: submission of information to external bodies
• Incidents of restraint and seclusion• Involvement: People are supported to communicate in their preferred method.• People are involved in planning their discharge from the point of admission.
Supporting points: • Use of data/information to improve the quality of services.
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Using data for regulatory inspections
• Intelligence is not used alone to form judgments, but rather to identify areas we want to explore further during inspection.
• Prior to our onsite inspections, we make a request to the provider and partner organisations, for specific information. This is used alongside national indicators to form the data pack used to plan the inspection. We are also considering how we can use information about prescribing.
• CQC will use a variety of methods to collect information about people’s experiences prior to and during inspections. These will be adjusted dependent on the communication needs of people using the services we are inspecting.
• Every inspection is followed by a quality summit, to which lead commissioners will be invited. This is the forum at which issues such as delayed transfers of care can be discussed between partners, in the presence of CQC.
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Engagement – Intelligent Monitoring
• Intention to publish intelligent monitoring with public and providers October 2014
• Various means of engagements: o On-line Community (over a 3 week period in June)o External Reference Group (date to be confirmed)o Internal workshop with colleagues across other teams
• Sharing with providers before October.
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Engagement – Intelligent Monitoring
• Asking for:o Feedback on the latest versiono comments on what is in the modelo if anything should drop to Tier 2o any other suggestions.
• Will strive to incorporate this into the version we will share in October where possible
• Separate External Reference Groups for LD and CAMHS – they are also welcome to comment on the main MH set but will also consult with them separately as these indicators are developed
http://www.cqc.org.uk/organisations-we-regulate/get-involved/join-our-online-communities-providers
Technical Aspects of Data Submission
Catherine Faley/Judith Ellison Data Collection Team
Health and Social Care Information Centre
Data Collection
• Data security• Overview of system• Registration process (August/September)• Data entry and validation (First 2 weeks of
October)• Data and definitions• Pilots• Key messages
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Data Security
• Why patient level data?• Section 254 H&SC Act 2012• Secure collection system
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Registration Process Part 1
You will be invited to register when the registration period is open
Registration is a two step process, first of all you get a single sign on (SSO) account.
https://login.hscic.gov.uk/Login.aspx
You use an email to register, you need to remember this for the next step.
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Registration Process Part 2• The organisation then fills in
a word document with details of each user
• The form is then emailed to the Caldicott Guardian who completes the final section and emails the document to the Contact centre
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Registration
• The Health and Social Care Information Centre Contact Centre will:– verify the Caldicott Guardian; then– add the users to the system; and,– send them an email letting them know they can
start using the system
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Data Collection System
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Data Entry
• Prepare data in advance– Spreadsheet – format, accurate, complete (refer
to dataset)
• Individual patient record (if “small” numbers), or
• File Submission
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Data Entry: (1) Individual Record
You can add a new record here
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Data Entry: (1) Individual RecordEnter NHS Number
And date of birth
84
Select “Submit”
Data Entry: (1) Individual Record
85
Select “Submit”
Data Entry – Validation
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Data Entry: (2) File Submission
87
Data Entry: (2) File Submission
88
Data Entry: (2) File Submission
89
Data Entry: (2) File Submission
90
Data and Definitions
Some Key Fields:– NHS Number (Q2)– ODS Code: Provider (Q3), Commissioner (Q4a) and
Hospital Site Code (Q35)
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Pilots
• Test live system• Small number of organisations – volunteers• During July/early August
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Key Messages
• Census date = 30 September 2014• Register before then• Prepare data in advance• Help with pilot?• Please complete form in pack with details of
contact
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Health and Social CareInformation Centre - Contacts
Contact Centre: 0845 300 6016 or [email protected]
Helpdesk: [email protected]
Catherine Faley [email protected]
Judith Ellison [email protected]
www.hscic.gov.uk/ldcensus94
Health and Social Care Information Centre
Nick BridgesService Delivery Manager
Overview - Lack of dataIn responding to limited data availability the Department of Health Winterbourne View Concordat includes:
“….develop a new learning disability minimum data set to be collected through the Information Centre from 2014/15”
A clear need exists for more data and information for use in monitoring service delivery.
Overview – Collecting data• Discussion over how best to address data issues concluded
that it would be more efficient to expand the scope of the Mental Health Minimum Data set (MHMDS) rather than develop a new data set. This gave rise to the Mental health and Learning Disabilities Data Set (MHLDDS).
• Separate collections established whilst the MHLDDS is developed:– Assuring Transformation collection > Commissioners– LD Census > Providers
• Long term aim: MHLDDS to supply data needed to support learning disability services
Overview - MHLDDS• Replaces the MHMDS
– If you submitted the MHMDS then you will need to submit the MHLDDS
• Scope is expanded to include additional services– If you did not previously submit the MHMDS you may be required to submit
the MHLDDS
• Collection mandated from 1st September 2014
• Monthly submission
• First submission in November 2014
• Guidance documents available from::
– http://www.isb.nhs.uk/documents/isb-0011/amd-3-2013/index_html
– http://www.hscic.gov.uk/mhldds
Overview of MHLDDS changesLots of changes, including:
– Scope expansion:• Learning Disabilities and Autism Spectrum Disorder Services • Non NHS funded optional submission
– Amendments to reflect service delivery– Payment and Pricing changes– Protected Characteristics – Disability– Smoking status– Conditional discharges
Today about learning disability specific changes
Learning disability services – Data collectionIn MHLDDS v1 a small number of changes made to support learning disability and autism services:• Data set already supported services• Changes made:
– Scope expansion– HoNOS-LD inclusion– Disability Protected Characteristic inclusion
• More changes will be made in version 2 (and future versions) – Reduce or remove the requirement any additional
collections
Expanded to include Learning Disabilities and Autism Spectrum Disorder Services and
• If the client is wholly funded by the NHS – data submission for that client is mandatory;
• If the client is partially funded by the NHS – data submission for that client is mandatory;
• If the client is wholly funded by any means that is not NHS – data submission is optional
NOTE: The basis of data submission is the client, not the service. This means that services may be mandated to submit data for all, some or none of their clients depending on the mix of clients receiving treatment and funding sources.
Data set scope
• Data is submitted via the Mental Health Bureau Service, on a monthly basis, using the NHS N3 network
• You must register to use the service
• Guidance describes the submission process
• Various options exist for obtaining a N3 connection, including use of a aggregator servicehttp://systems.hscic.gov.uk/infogov/igsoc/commn3agg
• Local options may exist to use the N3 connection of another provider
Making a submission – key considerations
Registering with the Bureau Service Portal• Caldicott Guardian already registered? Check the Register by navigating to
https://nww.openexeter.nhs.uk/nhsia/index.jsp and clicking on the blue box at the bottom that says ‘Caldicott Guardian Register’.
• If the name is incorrect or missing, download and complete the Caldicott Guardian Registration Certificate form to register the correct Caldicott Guardian and send this back to the address on the form. http://systems.hscic.gov.uk/data/ods/searchtools/caldicott
• Complete the MHMDS v4.1 0 Data User Certificate form available at http://systems.hscic.gov.uk/ssd/prodserv/vaprodopenexe/ to request access to Open Exeter for MHMDS v4.1 and send it to the address on the form (Note: the addresses for the two forms are different)
• If the organisation’s Caldicott Guardian is already present and correct on the Calidcott Guardian Register then the provider can just complete the MHMDS v4.1 Data User Certificate form
• Please note that once issued, accounts must be activated within a short period of time. For further help please contact [email protected]
Consideration of three changes
1. HoNOS-LD inclusion
2. Disability Protected Characteristic inclusion
3. Identifying LD service users
HoNOS-LD inclusion
HoNOS-LDUnfortunately an issue has been identified in the MHLDDS v1 specification, which will be amended as soon as possible
– Requirement exists to allow rating of most prominent behaviours present (i.e. more than one may be present). This cannot currently be collected.
• A - behaviour destructive to property; B - problems with personal behaviours, for example, spitting, smearing, eating rubbish, self-induced vomiting, continuous eating or drinking, hoarding rubbish, inappropriate sexual behaviour; C - rocking, stereotyped and ritualistic behaviour; D - anxiety, phobias, obsessive or compulsive behaviour; E – others
– So, for example:• Could have a score for only behaviour A, or• Could have a score for behaviours A, B and C, or• Could have a score for behaviours C, D and E, or• Could have a score for behaviours A, B, C, D and E
– Amendments will be made as soon as possible• An amended IDB (Intermediate Database) has been issued
– http://bjp.rcpsych.org/content/180/1/67.full
Learning disability services – HoNOS LDAmending collection to allow:
Disability Protected Characteristic inclusion
Protected CharacteristicsThe included disability table is the first of the 9 Protected Characteristics defined by the Equality Act 2010 to be included:
– disability – age– gender reassignment– marriage and civil partnership – pregnancy and maternity – race– religion or belief – sex– sexual orientation
http://www.legislation.gov.uk/ukpga/2010/15/section/4
Other items will be included at a future date – precisely how and where they will be collected is yet to be decided
Protected Characteristic - DisabilityA series of questions used to determine type of disability
Note:– First issue of the questions
– Developmental
– We will listen to your thoughts
– The questions presented are based on the following documenthttp://www.improvinghealthandlives.org.uk/publications/1145/Have_you_got_a_learning_disability?_Asking_the_question_and_recording_the__answer_for_NHS_healthcare_providers
Protected Characteristic - Disability
The ‘questions’ are:
• Self assessed
• Ask about ‘disability’, not just learning disability
• Need exists to use professional judgement to……
– Determine whether the patient has a physical or mental health conditions lasting, or expected to last, 12 months or more
– Provide guidance and give examples as appropriate to the client to ensure their understanding and so assure accuracy of their response
Example questions
• Behavioural and emotional question: "Do you have times when you lack control over your feelings or actions?"
• Hearing question: "Do you have difficulty hearing, or need hearing aids, or need to lip-read what people say?“
• Manual dexterity question: “Do you experience difficulty performing tasks with your hands?”
Example questions
Memory or ability to concentrate, learn or understand questions:
• “Do you have difficulty with memory or ability to concentrate, learn or understand (learning disabilities and autism spectrum disorder) and did it begin before the age of 18?”
• “Do you have difficulty with memory or ability to concentrate, learn or understand (learning disabilities and autism spectrum disorder) and did it begin when aged 18 or over?”
Identifying LD service users
Identifying learning disability patients• Various data items will allow identification, the use of
which will depend on the analysis requirement:– specialty– intended care intensity– disability protected characteristic– ward type– treatment function code– team type– Diagnosis
• Data quality is very important
Summary• Much change
• Make sure you understand what has changed and impact on local processes
• Do you need to register for Bureau Service Portal access?
• Do you have a N3 connection?
• Use available guidance
• Queries can be raised with HSCIC
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MHLDDS – Future versions
Nick BridgesService Development Manager
Possible development pathVersion 2
Mandate: 2015 or 2016?
• Intervention type codes • High priority changes
Version 3Mandate: ?
• Additional LD changes
• Lots of other changes
Include features:Learning Disability CensusAssuring Transformation
National Key Performance Indicators
LD changes
Possible amendments include inclusion of items from:
• Census collection
• Assuring Transformation collection
And other amendments to team types, ward types etc to reflect service delivery
Data set change requirements
Let us know your thoughts
• Amendments needed?
• New data items needed?
• Analysis requirements?
Consultation and development
• Once requirements are gathered a period of consultation will be undertaken.
• The HSCIC Technical User Group (TUG) will be used to determine how changes identified should be implemented in the data set– If your interested in assisting in this work
please let me [email protected]
Winterbourne View Joint Improvement Programme:
change, progress and the local context
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Learning Disability Census - awareness event
June – July 2014
Our vision:“Everyone, with no exception, deserves a place to call home. Person by person, area by area, the number of people with learning disabilities and autism in specialist hospitals and Assessment and Treatment Units will permanently reduce to the point it will become extremely rare for a person to be excluded from the right to live their life outside of a hospital setting.”
What is the JIP?• Established “to provide leadership and support to transform
services locally” (Government Transforming Care report / Concordat)
• Jointly led by the Local Government Association and NHS England, funded by the Department of Health
• Funding for 2 years, ending in March 2015• Key aims:
• To support local area partners to change and improve care and support for people with a learning disability and / or autism and behaviour that challenges through the development of high quality community-based provision
• To use learning to inform national policy discussions on key issues that are impacting on local area progress
• To improve the experiences and life outcomes of people with a learning disability and / or autism
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Key outcomesWorking with our partners (LGA, NHS England, CQC, clinicians, providers, commissioners, individuals and their families etc.) we want to achieve:
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• A permanent reduction in the numbers of people in a hospital setting
• High quality community based support from early years to prevent hospital admissions (life-course planning)
• Reduced dependency and reduction in length of stay for those admitted to hospital
• Local areas fully engaged with and accountable to individuals and their families
No one single agency can achieve these things. We can only achieve real change if we work together and are joined up.
Establishing baseline data through things like the Learning Disability Census is crucial to measure progress and increase local accountability
Our approach• Local: person by person, area by area• Partnership approach: no big budget and no central authority• About behaviour change across the board – challenging the
status quo, being engaged and better informed, working in a joined up way = better outcomes for people
• Working with and guided by families and individuals with direct experience
• Support to all 152 Health and Wellbeing Board areas, with three key strands of activity:• 35 areas involved in an in-depth review process of support• Proportionate support with remaining areas based on
support requests and analysis of need• Improving Lives programme – reviewing support packages
of all of the former Winterbourne View residents, and others of concern
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The challenges to progress: what we are learning from our work with areas
• Lack of link up across commissioning partners (NHS England, CCG and local authority)
• Challenges in reaching funding agreement and financial flows• Differing opinions about suitability for discharge / community
based living, including where there is Ministry of Justice involvement
• Lack of suitable local provision – e.g. delayed discharge• Lack of well assessed personalised discharge planning – e.g.
placements to existing vacancies rather than micro commissioning and the limited role of community teams from start of process
• Lack of knowledge / expertise of more creative options• Commissioner and providers not working together
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But: also evidence of positive progress and activity – e.g.
• Bespoke housing solutions for people based on person centred planning
• Collaborative working across health / social care commissioning
• Independent assessments of people in assessment and treatment placements
• The development of intensive support packages to prevent admission and support transition
• Development of specific teams to support the overcoming of barriers and aid discharge
• Development of a range of community based services such as crisis support at home and Positive Behaviour Support as part of a new Assessment and Treatment pathway
• Evidence of movement of people out of hospital settings (but beds being refilled and at a similar rate)
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Some of our activityProgramme of activity based on an understanding and response to the key ‘blockages’ to achieving change:• Collaborative commissioning workshops – 20 events
being held• Finding Common Purpose (with ADASS) – addressing
issues between care providers and commissioners – e.g. procurement regulations, risk sharing etc.
• Collection and dissemination of innovative practice and what works – promoting how to do things differently
• Facilitation of peer support – link ups across localities• Development of Housing Solution workshops• National discussions – e.g. Ministry of Justice
involvement • Increased local accountability and transparency
through the sharing of information / data with local people
How we are using the data to inform our work
• Rich information about the group of people we are committed to supporting
• Key measure of success is through a reduction in the numbers accessing inpatient care – the Census provides a baseline by which to measure progress and changes in practice
• Regional / local data (e.g. by NHS Area teams) allows the Programme to be informed in their communication with and support to local areas about ‘their’ numbers
• Help to identify areas with large numbers and target our support
• Data is helping us to ‘unpick’ some of the challenges to progress – e.g. analysis of Mental Health Act of patients will help us to understand more about type of section and lengths of detention etc.
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Visit: www.local.gov.uk/place-i-call-home
Sign up to receive our news bulletin by e-mailing: [email protected]
Call the team on 020-7664-3122 or by sending us an e-mail
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