Learning Disability Census
Awareness events
June – July 2014
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
2
Timings
13.00 – 13.10
Item
Arrival and refreshments
Speaker
13.10 – 13.15
Welcome, background and context for
2014 Census
Learning Disability Census 2013 – Key
findings and data quality considerations
Zawar Patel, DH
13.40 – 14.05
14.05 – 14.30
Thematic analysis
Clinical implications concerning the
quality of care and practice
14.30 – 14.55
Regulatory impact, census data usage,
future uses and practice change
Gyles Glover, PHE
John Devapriam,
Leicestershire Partnership
NHS Trust
Giovanna Maria Polato, CQC
14.55 – 15.05
15.05 – 15.35
Break
Group discussion

Are the data helpful?

How have you used the data?

How will you use the data?
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
Summary and Close
Joint Improvement Board
Representative
13.15– 13.40
16.45-16.50
Robert Cavalleri, HSCIC
All
Zawar Patel
3
Zawar Patel
Learning Disability Policy Lead
Department of Health
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
5
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
6
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
7
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."
8
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
9
Robert Cavalleri
Specialist 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
home
December 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
• 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
England
numbers / percentages
Service users
All service users where providers supplied 'other' or 'invalid' postcodes of residence
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
All other providers (95)
•
•
•
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
Ageband
Records
no.
Under 18
18 - 24
25 - 34
35 - 44
45 - 54
55 - 64
65 and over
Unable to trace
Overall
Source: Learning Disability Census 2013
185
666
921
616
566
225
71
3,250
Records
after
tracing
no.
155
665
921
609
559
225
71
45
3,250
Difference
no.
-30
-1
0
-7
-7
0
0
+45
0
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
Gender
Female
Male
Not known/Unable to trace
Grand Total
Source: Learning Disability Census 2013
no.
Records
after
tracing
no.
824
2,424
2
3,250
818
2,387
45
3,250
Records
Difference
no.
-6
-37
+43
0
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
Why it’s important..
• Thank you for
listening.
robert.cavalleri@nhs.net
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
Length of stay at time of census for
children and young people
Less than 3 months (n=83)
Less than 3 months (n=83)
6%
6%
12%
12%
19%
19%
3 to 6 months (n=19)
3 to 6 months (n=19)
51%
51%
6 to 12 months (n=31)
6 to 12 months (n=31)
1 to 2 years (n=19)
1 to 2 years (n=19)
12%
12%
2 to 5 years (n=9)
2 to 5 years (n=9)
Specifically worrying groups for Children
and Young People – i. Relatively long stayers
Distance of hospital from home for
children and young people
1%
1%
19%
19%
9%
9%
7%
7%
Same postcode for residence
Same postcode for residence
and hospital (n=1)
and hospital (n=1)
Less than 10km (n=15)
Less than 10km (n=15)
10 to 20km (n=11)
10 to 20km (n=11)
21%
21%
20 to 50km (n=34)
20 to 50km (n=34)
50 to 100km (n=21)
50 to 100km (n=21)
30%
30%
13%
13%
100km or more (n=49)
100km or more (n=49)
Missing (n=30)
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
England
South West
South East
London
East of England
West Midlands
East Midlands
Yorkshire and The Humber
North West
North East
0
0.5
1
1.5
2
2.5
3
3.5
Inpatients per 1,000 people with learning disability
Large and inexplicable variation between
North East and the rest of the country
4
4.5
0.00
0.25
0.50
0.75
1.00
Length of stay and number of learning
disability census patients on site
0
5
10
Length of stay at census, years
1 to 5
26 to 50
6 to 10
More than 50
11 to 25
Larger hospital sites are associated with longer
stays – even after allowance for other factors
15
0.00
0.25
0.50
0.75
1.00
Distance from home and length of
stay at census
0
50
100
150
Distance from home, km
Less than 3 months
2 to 5 years
3 to 6 months
5 to 10 years
6 to 12 months
10 years or more
1 to 2 years
Further from home is associated with longer
stays - even after allowance for other factors
200
Prevalence of inpatient care for adults with
learning disability by region of residence
England
South West
South East
London
East of England
West Midlands
East Midlands
Yorkshire and The Humber
North West
North East
0
5
20
15
10
Inpatients per 1,000 people with learning disability
Large and inexplicable variation between
regions - see North East and South West
25
30
Prevalence of IP care for adults by
RCPsych LD bed classification
England
South West
Secure forensic
South East
Acute learning
disability
London
Generic acute mental
health
East of England
Forensic rehabilitation
West Midlands
Complex continuing
care and rehabilitation
East Midlands
Yorkshire and The
Humber
Other beds including
neuropsychiatric
Missing or invalid data
North West
North East
0
5
10
15
20
25
Inpatients per 1,000 people with learning disability
30
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
Currently not
dischargeable due to
mental illness
England
South West
Currently receiving active
treatment plan, discharge
plan not in place
South East
London
Working towards
discharge to identified
placement, or discharge
plan in place
East of England
West Midlands
Requires indefinite
inpatient care for
behavioural needs
East Midlands
Yorkshire and The
Humber
Requires indefinite
inpatient care for physical
needs
North West
North East
0
5
10
15
20
25
Inpatients per 1,000 people with learning disability
Large variation: North East more active treatment
no discharge plan, and more blocked transfers
30
No onward placement
available, delayed
transfer of care
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
Female
Age: vs 18-34
35 to 64
65 to 110
Unknown
Ethnicity: vs all specified groups
Not stated
Reasons for hospital admission - each present vs
absent
Mental illness
Learning disabilities
Challenging behaviour
Personality disorder
ASD
Disabilities present
Learning disabilities
ASD
Visual impariment
Hearing impairment
Mobility impairment
Ward security - vs general (non-secure)
Low secure
Medium secure
High secure
Size of ward site - vs 1 to 5 patients
6 to 10
11 to 25
26 to 50
More than 50
Distance from home vs <10km
Recorded as live at hosp
10 to 19.9km
20 to 49 km
50 to 99 km
100 km or more
Missing
Vs 5 episodes or fewer
6 or more episodes of self harm
Any Seclusion
Vs NHS
Independent sector
Variables we tried – Logistic regression, so all together.
Factors associated with longer stay
lengths (with odds ratios )
Stay length to census
Gender: vs Male
Age: vs 18-34
Ethnicity: vs all specified
groups
Ward security - vs general
(non-secure)
Size of ward site - vs 1 to 5
beds
Distance from home vs <10km
Vs No seclusion
Vs NHS
2 years of more
5 years of more
Female 0.6x
Age 35 to 64 1.6x
Age 65 to 110 3.6x
Unknown 27.4x
Female 0.6x
Age 35 to 64 2.5x
Age 65 to 110 5.7x
Unknown 17.9x
Not stated 0.1x
Not stated 0.1x
High secure 5.0x
26 to 50 beds 1.7x
More than 50 beds 3.7x
Recorded as living at
hospital 4.4x
Any Seclusion 0.7x
Independent sector 1.9x
Low secure 0.7x
Medium secure 0.5x
High secure 2.4x
More than 50 beds
2.7x
Recorded as living at
hospital 5.2x
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
Female
Age: vs 18-34
35 to 64
65 to 110
Unknown
Ethnicity: vs all specified groups
Not stated
Reasons for hospital admission - each present vs
absent
Mental illness
Learning disabilities
Challenging behaviour
Personality disorder
ASD
Disabilities present
Learning disabilities
ASD
Visual impariment
Hearing impairment
Mobility impairment
Ward security - vs general (non-secure)
Low secure
Medium secure
High secure
Size of ward site - vs 1 to 5 patients
6 to 10
11 to 25
26 to 50
More than 50
Distance from home vs <10km
Recorded as live at hosp
10 to 19.9km
20 to 49 km
50 to 99 km
100 km or more
Missing
Vs 5 episodes or fewer
6 or more episodes of self harm
Any Seclusion
Vs NHS
Independent sector
Variables we tried – Logistic regression, so all together.
Factors associated with Adverse
events
Variable
Seclusion
Age: vs 18-34
Ethnicity: vs all specified groups
Restraint
Assault
Accidents
35 to 64 (0.6x)
Challenging
behaviour (2.2x)
Reasons for hospital admission each present vs absent
Challenging
behaviour (3.6x)
Personality
disorder (0.5x)
Learning
disabilities (3.3x)
ASD (1.9x)
Mobility
impairment (3.9x)
Disabilities present
Ward security - vs general (non- Medium secure
secure)
(3.5x)
11 to 25 beds
(4.3x)
Size of ward site - vs 1 to 5 beds
Distance from home vs <10km
Vs 5 episodes or fewer
Vs NHS
6 or more
episodes of self
harm (10.6x)
50 to 99 km
(2.2x)
6 or more
episodes of self
harm (8.8x)
Independent
sector (1.7x)
6 or more
6 or more
episodes of self episodes of self
harm (4.2x)
harm (4.9x)
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
North East
North West
Yorkshire / Humber
East Midlands
West Midlands
East of England
London
South East
South West
Total
Number of in % in problem
Number in
patients
group 1
problem group 1
382
23.0
88
427
15.5
66
255
9.0
23
500
13.8
69
351
13.1
46
553
28.4
157
250
10.0
25
285
27.0
77
78
15.34
12
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)
North East
North West
Yorkshire / Humber
East Midlands
West Midlands
East of England
London
South East
South West
Total
Number of in
patients
382
427
255
500
351
553
250
285
78
3081
% in problem
Number in
group 2
problem group 2
17.0
65
10.5
45
9.4
24
19.2
96
13.1
46
19.0
105
4.8
12
10.2
29
9.0
7
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
Dr John Devapriam
Consultant Psychiatrist in
Intellectual Disabilities
52
Extent of the Issue (in England)
53,493,700
(population of England)
1,198,000
(people with LD)
298,000
900,000
(Children with LD)
(Adults with LD)
191,000 (21%)
Open to LD services
3035 (0.3%)
In in-patient units
Tiered Model of Care
In-patient services
(3035)
Tier 4
Tier 3
Community
services
(187,750)
Highly specialised element
of community LD services
Tier 2
General community LD services
Tier 1
Enabling Primary Care and other mainstream services
Tier 4
Cat 1
High Secure
Category 1
Medium Secure
Category 1
Low Secure
Category 4 / 5
Category 2 / 3
Community
1. Risk
2. A&T
LD Census 2013
Cat 1
1780
73
High Secure
Category 1
512
Medium Secure
Category 1
Low Secure
1470
Category 4 / 5
Category 2 / 3
Community
1195
Antipsychotic use
PWLD
CB
PATO, PATP, VATO, AA,
Fire-setting, Sex
Offences
Physical
MI & PD
LD
(cause of)
ASD
Offending behaviour
Antipsychotic use (Deb, 2007)
EC1
• Gagiano 2005
• Vanden Borre 1993
• Tyrer 2009
EC2
• Malt 1995
• Zarcone 2001
EC3
• La Malfa 2001, Boachie 1997,
• Lott 1996, Janowsky 2003, La Malfa 2003
• Talayasingam 2004
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?
Thank you
John.Devapriam@leicspart.nhs.uk
Tier 4
Cat 1
High Secure
Category 1
Medium Secure
Category 1
Low Secure
Category 4 / 5
Category 2 / 3
Community
1. Risk
2. A&T
Giovanna Polato
Analyst Team Leader – Mental
Health, Learning Disability and
Community Intelligence Monitoring
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
68
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
o
o
o
what we look at on an inspection.
how we judge what 'good' care looks like.
how we rate care services to help judge and choose care.
how we use information to help us decide when and where we inspect.
• Provider handbook
http://www.cqc.org.uk/sites/default/files/20140407_mh_provider_handbook_consultation__final_for_web.pdf
69
Using data for regulatory inspections
Elements derivable from LD Census:
Domain: Safe:
• Notable events and incidents
• Safety indicators
Domain: Effective
• LD Activity  MHLDDS
Domain: Responsive
• Delayed Transfers of Care
Domain: Well-led
• LD Activity  MHLDDS
70
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.
71
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.
72
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.
73
Engagement – Intelligent Monitoring
• Asking for:
o
o
o
o
Feedback on the latest version
comments on what is in the model
if anything should drop to Tier 2
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
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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
77
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
81
Data Entry
• Prepare data in advance
– Spreadsheet – format, accurate, complete (refer
to dataset)
• Individual patient record (if “small” numbers),
or
• File Submission
82
Data Entry: (1) Individual Record
You can add a
new record here
83
Data Entry: (1) Individual Record
Enter NHS Number
And date of birth
Select “Submit”
84
Data Entry: (1) Individual Record
Select “Submit”
85
Data Entry – Validation
86
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
93
Health and Social Care
Information Centre - Contacts
Contact Centre: 0845 300 6016 or
enquiries@hscic.gov.uk
Helpdesk: ldcensus@hscic.gov.uk
Catherine Faley c.faley@hscic.gov.uk
Judith Ellison judithellison@hscic.gov.uk
www.hscic.gov.uk/ldcensus
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Nick Bridges
Service Delivery Manager
Health and Social Care
Information Centre
Overview - Lack of data
In 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 changes
Lots 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 collection
In 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
Data set scope
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.
Making a submission – key
considerations
• 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 service
http://systems.hscic.gov.uk/infogov/igsoc/commn3agg
• Local options may exist to use the N3 connection of another
provider
•
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 exeter.helpdesk@hscic.gov.uk
Consideration of three changes
1. HoNOS-LD inclusion
2. Disability Protected Characteristic inclusion
3. Identifying LD service users
HoNOS-LD inclusion
HoNOS-LD
Unfortunately 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 LD
Amending collection to allow:
Disability Protected
Characteristic inclusion
Protected Characteristics
The 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 - Disability
A 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
document
http://www.improvinghealthandlives.org.uk/publications/1145/Have
_you_got_a_learning_disability?_Asking_the_question_and_recordin
g_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 lipread 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
MHLDDS – Future versions
Nick Bridges
Service Development Manager
117
Possible development path
Version 2
Mandate: 2015 or 2016?
Version 3
Mandate: ?
• Intervention type codes
• Additional LD changes
• High priority changes
• Lots of other changes
Include features:
Learning Disability Census
Assuring 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 know
Nick.bridges@nhs.net
June – July 2014
Learning Disability Census awareness event
Winterbourne View Joint
Improvement Programme:
change, progress and the local context
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.”
122
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 outcomes
Working with our partners (LGA, NHS England, CQC, clinicians, providers,
commissioners, individuals and their families etc.) we want to achieve:
• 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
Establishing baseline
data through things
like the Learning
Disability Census is
crucial to measure
progress and increase
local accountability
No one single agency can achieve these things. We can only achieve
real change if we work together and are joined up.
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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
125
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
126
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)
127
Some of our activity
Programme 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-callhome
Sign up to receive our news bulletin
by e-mailing: WVJIP@local.gov.uk
Call the team on 020-7664-3122 or
by sending us an e-mail
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