1. Learning Disability Census
Awareness event
Manchester
11 September 2013

2. Programme Background Purpose of event Census coverage Data collection
Questions

3. Learning Disability Policy Lead Department of Health
Zawar Patel
Learning Disability Policy Lead
Department of Health

4. Winterbourne View Hospital
Opened in December 2006
Registered for assessment and treatment and rehabilitation for people with learning disabilities
Most patients placed there under the Mental Health Act by commissioners from across England
Closed in 2011 after abuse of patients exposed
Several reports into events at Winterbourne View
NHS Report looked at how people were placed there
Serious Case Review gave details of what happened

5. Transforming care
Department of Health Review from May 2011 to December 2012
Looked at how people with behaviour that challenges are supported across England
Informed by:
Other reports and evidence, including CQC inspections of services for people with learning disabilities
Involvement and engagement with people with learning disabilities or autism, family carers, providers, commissioners and staff
Final report published in December 2012

6. Transforming care - Issues identified
Around half of patients were far from home
Very long stays. In some cases over 3 years
Patients frequently subject to restraint
Families not allowed to visit patients on wards or in bedrooms
Closed culture made abuse hard to spot
Inadequate access to advocacy for patients
Complaints not handled properly

7. Concordat: Programme of Action
Signed by more than 50 organisations
Over 60 actions focused on:
Improving the quality of care and outcomes
Planning around needs of patients from childhood
Ensuring provision of local, personalised services
Avoiding unnecessary inpatient assessment and treatment
Moving people from hospital back home or to community support quickly
Clear line of sight and responsibility from commissioners to each individual in inpatient settings

8. Concordat: Programme of Action
Key commitments
Commissioners to identify people with a learning disability or autism and / or behaviour that challenges, who may also have a mental health condition
To review identified people’s care and if appropriate move individuals to community settings
Local joint plans in every area based on models of good care for people of all ages
Joint Improvement Programme led by NHS England and Local Government Association to work with local areas
Oversight of progress through the Learning Disability Programme Board

9. Learning Disability Census
Concordat action to commission an 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
The audit will be repeated one year on to enable the Learning Disability Programme Board to assess what is happening
Learning Disability Census identified as way of delivering this action
Based on Count Me In census methodology, but questions changed to focus on issues identified in Transforming care
Data will be:
Published to show what is happening nationally
Shared with commissioners to support plans to review people’s care

10. Census coverage – who is included?
People in inpatient beds for mental and / or behavioural healthcare
Who have either Learning disabilities or Autistic Spectrum Disorder (including Asperger’s Syndrome)
Any age
Any level of security (General / Low / Medium / High)
Any status under the Mental Health Act (Informal or detained)
Do not include:
People in accommodation not registered with the CQC as hospital beds
People in beds for physical health care
People who do not have either learning disabilities or autism

11. What do we want from the Census?
How many people with a learning disability or autism are currently in in-patient mental and behavioural care beds?
How many have personality disorders or mental illnesses requiring hospital in-patient treatment now?
How many are known to local commissioners and being actively managed by learning disability specialists from their home area?
How many are working towards a planned discharge?
How satisfactory or unsatisfactory are current placements?
How does this vary around the country?

12. National policy drivers
Everyone counts: Planning for Patients 2013/14
Guaranteeing no community is left behind or disadvantaged
Better outcomes from mental health services
NHS Mandate
“The NHS Commissioning Board’s (NHS England) objective is to ensure that vulnerable people, particularly those with learning disabilities and autism receive safe, appropriate, high quality care. The presumption should always be that services are local and that people remain in their communities; we expect to see a substantial reduction in reliance on inpatient care for these groups of people”

13. Team Leader - Intelligence Care Quality Commission
Giovanna Polato
Team Leader - Intelligence
Care Quality Commission

14. CQC Learning Disability Inspection Programme - Background
An advisory group was established to provide experience and expertise to CQC
150 locations were inspected across NHS, independent healthcare and adult social care settings
We reviewed whether people experienced safe and appropriate care, treatment and support and whether they are protected from abuse
Inspections were carried out by CQC inspectors, professional advisors and ‘experts by experience’ both people who have used services and family carers

15. Key overall findings
Overall just under half (48%) of locations did not meet the required standards
Just over half assessment and treatment services were compliant with both outcomes (52%), but more people were in services that were non compliant (58%)
Independent health care locations were twice as likely to be non compliant as NHS locations (68% and 33% respectively)

16. Professor Gyles Glover
Co-Director
Learning Disabilities team
Public Health England

17. Count Me In Census
Designed to look at ethnic inequalities in treatment for mental and behavioural conditions
Ran annually from 2005 to 2010 – Learning disability only covered from 2006
Covered all mental and behavioural in-patient hospitals – NHS and independent
Following Winterbourne View, a key source of information about the scale of inpatient care for people with learning disabilities
Census asked about normal use of beds (for people with mental illness or learning disabilities, also about disabilities (including whether each person had a learning disability))

18. Count Me In Census
The next four slides show what the Count Me In census has shown about inpatient care of people who were reported to have learning disabilities. Some were in learning disability beds, some in mental illness beds
The census also identified 330 people with autism, but without learning disability in mental illness beds - they are not covered here

19. Trends in in-patients with LD - 1
Mental Illness vs Learning disability beds:
Numbers steady since 2007
Increasing proportion in mental illness beds since 2009
NHS vs independent sector beds:
Increasing proportion in independent sector beds

20. Trends in in-patients with LD - 2
Type of in-patient bed:
Numbers in A&T beds fairly steady
Increase in number in Rehabilitation beds
Decrease in numbers in Long Stay and ‘other’ beds
(Bed type data lost for 2008)
Stay length at time of census:
Proportion staying over 5 years falling
Since 2007, small increase in proportion staying less than 12 months

21. Substantial proportion with apparently unknown commissioner
Type of
commissioner

22. Frequency of incidents
The table shows the numbers (and percentage) of patients experiencing each of the types of adverse event shown at least twice and at least ten times in the three months up to the census date. Ten times in three months is on average roughly once per week.

23. Rate of use varies widely between areas
In-patients per 1000 known to GPs with LD
Map shows in-patients in A&T beds for people with learning disability per 1000 people known to GPs in the areas in which they live
Note this map uses a narrower set of data – LD beds only, and only A&T beds, also omits people whose commissioner is unknown
London

24. Health and Social Care Information Centre
Catherine Faley Data Collection Section Head & Robert Cavalleri Specialist Learning Disabilities Project Lead
Health and Social Care
Information Centre

25. Learning Disability Census - Data Collection
Overview of system
Registration process (During September)
Data entry and validation (First 2 weeks of October)
Data and definitions
Key messages

26. System Lots of benefits
 Clinical Audit Platform:
Lots of benefits
Internet Explorer 7 or above, Google Chrome or Firefox recent versions

27. 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.
You use an to register, you need to remember this for the next step.
You will be invited to register when the registration period is open

28. Registration Process Part 2
The organisation then fills in a word document with details of each user
The form is then ed to the Caldicott Guardian who completes the final section and s the document to the Contact centre
Caldicott Guardian or equivalent

29. Registration
The Health and Social Care Information Centre Contact Centre will:
verify the Caldicott Guardian; then
they will add the users to the system; and,
send them an letting them know they can start using the system

30. Data Entry Prepare data in advance
Spreadsheet – format, accurate, complete (refer to dataset)
Individual patient record (if “small” numbers, 20 or so), or
File upload
Ensure data are complete and accurate in advance of 30 September

31. Data Entry – Individual Record
LD Census Home
You can add a new record here
LD Census
Database holds all records previously registered

32. Data Entry – Individual Record
Enter NHS Number
And date of birth

33. Data Entry – Individual Record
Mandatory items are clearly shown
Help text will be provided for each data item
If patient exists the system will display data already held

34. Data Entry – Individual Record
Then add all required data as per dataset:
Fields are either mandatory or “required”
On the web form and file submission, validation errors will show up as data are submitted
Help text will be available where required next to the data item to which it refers
Explain difference between mandatory and required fields – i.e. missing mandatory field will mean you can’t submit – but does that apply to whole submission or just individual record. If individual records rejected on this basis need to make sure they find the information and add the record.

35. Data Entry – File Upload
If many patients – use file upload (csv format)
Guidance will be available
Mandatory fields MUST be completed in order to upload
Upload file, report shows errors against relevant row
Correct any errors and resubmit
csv format – how to do this – there will be guidance

36. Data and Definitions Some Key Fields: NHS Number (Q2)
Postcode of patient’s usual address (Q5)
Patient’s date of birth (Q8)
Reason for Hospitalisation (Mental Illness, Learning Disability, Challenging Behaviour, Personality Disorder/Self Harm/Other (Q15)
Disability (Sight, Hearing, Learning Disability, Autistic Spectrum Disorder, Mobility Impairment) (Q )
Hospital Site Location ID (Q32)
Hospital Site Location name (Q33)
Hospital Site Location postcode (Q34)
Service Type (MH or LD ward) (Q35)
Service type – Mental Health or Learning Disability ward
Disability – sight, hearing, Learning Disability, autistic spectrum disorder, mobility

37. Data and Definitions Learning disability includes the presence of:
A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;
A reduced ability to cope independently (impaired social functioning) which started before adulthood, with a lasting effect on development
Valuing People
A New Strategy for Learning Disability
for the 21st Century
A White Paper
March 2001

38. Content and rationale Patient registration information
As at 30 September Provides national snapshot of service receipt
Definitive (actual) rather than estimated
Identifies how close to home people are receiving services
Why they are receiving this type of service

39. Information on admission
Determines formal / informal nature of accommodation treatment and if current
Patterns of referral – which agencies are referring to specialist services
Are stays lengthy – residential accommodation or assessment and treatment?
Which needs are not being met in communities close to home?

40. Experience of care Determination of the frequency of incidents:
Self harm
Accidents
Physical assault
Restraint
Seclusion
What is the national picture for incidents and how do provider units compare with this?

41. Accommodation and location
Type of environment – are outcomes associated to facilities?
Where are services being provided and for how many patients?

42. Patient care details
Is care planned, agreed and reviewed with access to support from services and families locally?
Is medication a significant factor in the provision of treatment and care?
Are safeguards in place?
What is the cost of care?

43. Key Messages Census date = 30 September 2013 Register before then
Please complete form in pack with details of contact
Prepare data in advance
Helpdesk =

44. Health and Social Care Information Centre - Contacts
Catherine Faley
Judith Ellison
Robert Cavalleri
HSCIC Contact Centre: