People with learning disabilities and First Step in Cumbria: Access to First Step and service responses Chris Hatton; Lancaster University Dave Dagnan, Richard Thwaites, John Masson, Amy Cavagin; Cumbria Partnership NHS Foundation Trust

Background and what we did People with learning disabilities: Who comes into contact with First Step services? Where do referrals come from? How do First Step services respond to referrals? The IAPT experience for people with learning disabilities Conclusions Plan

Background IAPT services have the aim of being accessible to all adults, including disabled people All public services have a legal duty to provide anticipatory reasonable adjustments for disabled people, to ensure that their services are designed to be equally effectives for all groups Widespread evidence of primary and secondary health care services failing to make reasonable adjustments for people with learning disabilities Lack of evidence on: -How many adults with learning disabilities access IAPT services -How people with learning disabilities are referred into IAPT services -How IAPT services respond, and how effective they are for people with learning disabilities

What we did IAPT collects very comprehensive data on people referred to the service Examined two years of First Step Cumbria IAPT data (2009 & 2010), before the introduction of a screening tool designed to assess health literacy Cross-referred people in the IAPT database with people flagged as having a learning disability in NHS Trust and social services databases For comparative analyses of people with or without learning disabilities, where people were recorded as having multiple referrals we used the most recent referral to IAPT services

Who comes into contact with First Step services? 27,064 people referred to First Step in database 72 identified as people with learning disabilities (all from Trust database) 0.27% of people referred to First Step were people with learning disabilities Compares to 0.47% prevalence of adults with learning disabilities in Cumbria according to GP data; 0.44% prevalence of adults aged with learning disabilities in Cumbria according to social services data For the vast majority of clients (88.9% LD; 90.1% non-LD) only one referral into IAPT was recorded, although multiple referrals were recorded for a minority of clients.

Who comes into contact with First Step services? Compared to other referrals to First Step services, people with learning disabilities referred to First Step services tended to be: Younger (mean 34 vs 40 years) More evenly distributed by gender (49% vs 64% female) At the stage of initial contact with First Step, many clients did not report their ethnicity or disability Only three clients reported themselves to have a learning disability

Who receives IAPT services? Most recent referral episode: people with learning disabilities Primary diagnosis (n=26). Most common diagnoses: F32 – Depressive episode (9.7% LD clients); F41.2 – Mixed anxiety and depressive disorder (5.6% LD clients) F41.1 – Generalized anxiety disorder (4.2% LD clients) F99 – Mental disorder not otherwise specified (4.2% LD clients) Employment status (n=40): 7 employed; 23 unemployed and seeking work; 4 students; 3 long-term sick or disabled; 2 homemakers not actively seeking work; 1 retired Psychoactive medication use (n=41): 18 prescribed and taking; 1 prescribed but not taking; 22 not prescribed

Where do referrals come from? Both for people with and without learning disabilities, the most common source of referral by far was: A general medical practitioner (81.9% LD; 85.3% non-LD), followed by... -Self-referrals (6.9% LD; 8.3% non-LD); -Referrals from a community practice nurse/health visitor (8.3% LD; 3.2% non-LD).

How do First Step services respond to referrals? 64 closed cases with LD 23,516 closed cases without LD Deceased0 (0.0%)10 (0.0%) Did not engage19 (29.7%)7,674 (32.6%) Signpost/refer elsewhere17 (26.5%)1,980 (8.4%) Client declined treatment1 (1.6%)1,456 (6.2%) Client disengaged4 (6.3%)1,234 (5.2%) Mutually agreed termination 3 (4.7%)1,831 (7.8%) Discharge therapy completed 20 (31.3%)9,331 (39.7%)

The IAPT experience for people with learning disabilities: Four groups of clients GROUP 1: Single referral closed cases: IAPT therapy not provided (n=32) 23 people with no IAPT session; 9 people with 1-2 IAPT sessions 19 people failed to engage or disengaged; 7 were referred elsewhere; 6 were signposted elsewhere

The IAPT experience for people with learning disabilities: Four groups of clients GROUP 2: Single referral closed cases: IAPT therapy provided (n=14) People received on average 9.1 scheduled IAPT sessions (range 4-17) Overall people attended 70.3% of their scheduled sessions IAPT therapy for 8 clients recorded as CBT, for 4 clients counselling, for 2 clients guided self-help 12 of the 14 cases ended in therapy completed discharge (1 case was a discharge due to the client disengaging and 1 case was signposted elsewhere) Average PHQ9 scores for depression dropped from 17.2 to 11.2 Average GAD7 scores for anxiety dropped from 14.0 to 10.1

The IAPT experience for people with learning disabilities: Four groups of clients GROUP 3: Single referral open cases (n=8) 2 open cases in very early stages (2 sessions each) 6 people received an average 16.3 scheduled IAPT sessions so far (range 5-38) Overall people attended 67.3% of their scheduled sessions IAPT professionals recorded their role as CBT therapist doing CBT for all 6 Average PHQ9 scores for depression dropped from 18.5 to 15.7 Average GAD7 scores for anxiety dropped from 15.8 to 15.0

The IAPT experience for people with learning disabilities: Four groups of clients GROUP 4: Multiple referral cases (n=18) For 7 people, no referral episode was longer than two IAPT sessions The remaining 11 people shared a total of 31 referral episodes (2 currently open): For 10 of these 11 people, at least one referral episode was for 0-1 session, with failure to engage /disengagement the most common reasons for case closure Across 4 clients, 6 referral episodes lasted for 3-4 sessions, with failure to engage/disengagement the reasons for all 6 case closures Across 7 clients, 8 referral episodes lasted for 5 sessions or longer at an average of 10.3 scheduled sessions per referral episode (range 5-16 )

Conclusions 1 People with learning disabilities do use IAPT services, although not proportionately to the general population Clients’ learning disabilities generally unrecognised in IAPT data systems (and services?) Patterns of referral sources and primary diagnoses similar to the general population

Conclusions 2 Around half of people with learning disabilities referred into IAPT services do not go on to receive an IAPT service (failure to engage, disengagement, signposting elsewhere) IAPT services can be highly effective for people with learning disabilities Questions about patterns of multiple referrals, duration of IAPT therapy for some clients with learning disabilities, and whether IAPT intervention types/formats are always optimal for clients with learning disabilities