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
Plan
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
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
18-64 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
Deceased
23,516 closed cases
without LD
0 (0.0%)
10 (0.0%)
Did not engage
19 (29.7%)
7,674 (32.6%)
Signpost/refer elsewhere
17 (26.5%)
1,980 (8.4%)
Client declined treatment
1 (1.6%)
1,456 (6.2%)
Client disengaged
4 (6.3%)
1,234 (5.2%)
Mutually agreed
termination
3 (4.7%)
1,831 (7.8%)
20 (31.3%)
9,331 (39.7%)
Discharge therapy
completed
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