Inclusion Criteria

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Mental Health Services for Adults with Intellectual Disabilities – What Do Service Users and Staff Think of Them? Biza Stenfert Kroese, John Rose, Kuljit Heer and Alexis O’Brien

School of Psychology, University of Birmingham, Birmingham, UK

Accepted for publication 6 November 2012

Aim The current qualitative study was funded by the

Judith Trust to investigate service users’, support staff

and community team members’ views of the services

currently provided to adults with intellectual disabilities

and mental health problems and what they consider to

be desirable qualities for staff to possess.

Method In the first stage of the study, two focus groups

were conducted with service users who have intellectual

disabilities and mental health problems in addition to

two focus groups with a variety of staff, all of who had

recent experience of intellectual disabilities services. In

the second stage, individual interviews were conducted

with staff members employed in residential and

community intellectual disabilities services. The number

of participants totalled 54 (16 service users and 38 staff).

A qualitative analysis (IPA) was adopted to identify

dominant themes in the discourse of these stakeholder

groups.

Results The analysis produced a number of themes that

include: ‘being interested’, ‘communication’, ‘competence-

promoting support’, ‘past/present/future links’, ‘prevention’,

‘reviews and liaison’, ‘working with carers’, ‘looking after

staff’, ‘staff training/supervision’ and ‘interface between

services’.

Conclusion A number of suggestions for improving

services are identified and discussed in the context of

current service policies and procedures.

Keywords: intellectual disabilities, mental health services,

service users, staff, views

Introduction

The psychiatric diagnostic process possesses a number

of methodological problems for intellectual disabilities

specialists with prevalence figures varying widely across

studies, and there are therefore no reliable statistics

available on how many adults with intellectual

disabilities have mental health problems (e.g. Stenfert

Kroese et al. 2001). However, there is a consensus that

they are at least as prevalent as in the general

population with most researchers concluding that rates

are higher (e.g. Valuing People, DoH 2001). One study

found that if challenging behaviour and autistic

spectrum disorders are included, over 40% of the adult

population with intellectual disabilities can be said to

have additional mental health needs (Cooper, Smiley &

Morrison et al. 2007).

Efforts to reduce the psychological distress

experienced by people with intellectual disabilities must

consider the quality of current services and how they

can best provide prevention, early intervention and

good crisis management for this group of service users

with complex needs. Also, as most adults with

intellectual disabilities are likely to spend large amounts

of time in service settings and in contact with paid

support workers and other service providers whose

input and interventions can help or hinder recovery, the

quality of services is vital in determining how the

service users’ mental health problems affect their quality

of life.

A problem in meeting the mental health needs of

people with intellectual disabilities is the lack of

training received by staff working in intellectual

disabilities services on mental health problems and

Journal of Applied Research in Intellectual Disabilities 2013, 26, 3–13

Published for the British Institute of Learning Disabilities

likewise the lack of knowledge and experience mental

health staff have of intellectual disabilities (Chaplin

2004). It is important that ‘front line’ workers are able to

recognize the symptoms of mental illness and have the

confidence to refer to specialist services when needed,

as often service users themselves do not have the ability

or opportunity to self-refer. The majority of professional

and support staff working in intellectual disabilities

services come in regular contact with service users who

have mental health problems, yet a minority receive any

training in this complex area (Rose, O’Brien & Rose

2007). Recent evidence indicates that even brief training

can increase confidence, attitudes and working practices

in staff (Costello, Bouras & Davies 2007).

Aims

Despite a number of policy documents and guidelines

such as contained in Valuing People (DoH 2001), Valuing

People Now (DoH 2009) and the Green Light Initiative

(DoH 2004), mental health services for service users

with intellectual disabilities remain deficient both in

terms of quality and access. To date, little or no research

has investigated what service users with intellectual

disabilities and mental health problems or staff

members consider desirable personal qualities for

workers and the type of services they consider most

effective. A series of studies were designed to:

1. Identify what service users and paid workers

consider desirable personal qualities for people

working in this field to possess;

2. Explore experiences of staff and service users to

identify strengths and weaknesses of current service

provision for adults with intellectual disabilities and

mental health problems;

3. Collate suggestions for service improvements and

training/supervision programmes.

Method

The researchers (two academic clinical psychologists

with clinical and managerial responsibilities in the NHS,

one PhD psychology student and one NHS clinical

psychologist, respectively) met with a small steering

group, which included clinicians, academic staff and a

service user, to discuss the project aims and how best to

achieve them. Ethical approval was gained from the

appropriate committees. Informants included a wide

range of staff drawn from urban as well as rural areas,

residential as well as community settings and qualified

professionals as well as unqualified staff. Staff

participants were recruited through local service

managers who were asked to distribute information

leaflets and pass back information about potential

participants who had expressed an initial interest in the

study to the lead researcher. Members of staff were then

contacted to ask for their written consent and to arrange

a convenient time and venue for an interview to take

place. It was also agreed that service users would be

asked to participate if they had a learning disability and

additional mental health problems and were able to

give informed consent to taking part in the study. They

were approached via local managers and clinicians and

provided with accessible information leaflets about the

study before they were asked for their consent. As

the research focussed on the personal experiences of the

participants, it was decided not to use standardized

questionnaires but to employ an open-ended qualitative

methodology in order not to influence the choice of

topics discussed and the criteria used to judge the

quality of the services. For this purpose, semi-structured

interviews were designed.

Two different methodologies were used to collect the

data. First, a stakeholders’ event was organized during

which a number of focus groups (Johnson 1996) were

conducted with service users and a variety of staff.

Subsequently, individual interviews were conducted

with staff members employed in residential and

community learning disability services. The responses of

a total of 54 participants (16 service users and 38 staff)

were included, which is considered ample for the

purpose of IPA (Smith, Flowers & Larkin 2009).

Stakeholder focus groups

A stakeholders’ event was held during which four focus

group discussions were facilitated and recorded. It was

decided to have same-sex groups in order for the

participants to feel they could discuss private

experiences openly. It was known that a number of

female service users had experienced abuse from men

and their current mental health problems were closely

linked to these experiences, making open discussion

about mental health services in the proximity of men

difficult.

The four focus groups were female service users

(N = 8), male service users (N = 8), female staff (N = 10)

and male staff (N = 6). All service users were known to

have ID and also experienced mental health problems.

The staff groups included staff with a variety of roles in

supporting adults with ID including support staff

(N = 7), psychologists (N = 3), nurses (N = 2), a

4 Journal of Applied Research in Intellectual Disabilities

community team assistant, an assistant social worker, a

counsellor and an advocate.

Group discussions were limited to 1 h. All four focus

groups were co-facilitated by two experienced

professionals (social scientist-practitioners), and the two

service user groups also had a co-facilitator who was a

service user with ID. Focus group questions included:

‘What makes a good worker’? ‘What are workers

who are not so good like’? ‘Is it important for staff to

have qualifications (training)’? ‘If you/a service user

started feeling bad (low/upset), who can help’? The

discussions were digitally recorded and transcribed

verbatim according to UK Data Archive guidelines (www.

data-archive.ac.uk/create-manage/format/transcription).

Individual interviews

One-to-one interviews were conducted with a broad

range of staff members who worked directly with adults

with intellectual disabilities and mental health problems

including support workers and team leaders from

residential services and professionals working in

multidisciplinary community teams for adults with

intellectual disabilities. All interviews were digitally

recorded and transcribed verbatim as above.

The residential staff members (N = 12) were sampled

from urban (N = 6) and rural settings (N = 6) and from

a range of statutory, private and voluntary services.

They included two team leaders, one senior support

worker and nine support workers. Their ages ranged

from 20 to 52 years (mean = 38), and ten participants

were women and two men. Qualifications included

vocational and professional ones (2–4 award levels;

National Curriculum 2012), and four staff members had

received in-house training in at least one topic relevant

to the mental health needs of people with intellectual

disabilities (Mental health, Bipolar Disorder, Autism,

Challenging Behaviour).

The peripatetic professionals (N = 10) were drawn

from a number of teams covering urban (N = 4) and

rural (N = 6) areas. They included five community ID

nurses, four social workers and one assistant

psychologist. Their ages ranged from 24 to 64

(mean = 43), and seven participants were women and

three men. Qualifications ranged from diploma to

Master’s level (5–7 award level; National Curriculum

2012), and four staff members stated they had received

in-house training in topics relevant to the mental health

needs of their service users (Mental Health and

Intellectual Disabilities, Drugs and Alcohol, Dual

Diagnosis).

Staff participants were interviewed on a single

occasion for no longer than 1 h at a place most

convenient to them and also asked to complete a brief

questionnaire detailing their age, gender, employment

and qualifications.

Data analysis

The data were analysed using interpretive pheno-

menological analysis (IPA; Smith, Flowers & Larkin

2009). This is a qualitative method that has been

developed to understand the experiences of individuals

and the meanings that they give to these experiences.

The approach focuses on individual subjective

experiences through the process of analysis and

interpretation by the researcher. The interpretive nature

of the analysis process is informed by hermeneutics, the

theory of interpretation. That the analysis is interpretive

in nature is due to the active role of the researchers’

own ideas and understanding in the process of making

sense of the participants’ experiences. Smith and Osborn

(2003) describe the two-stage process where “The

participants are trying to make sense of their world; the

researcher is trying to make sense of the participants trying

to make sense of their world” (p.51).

The analysis process has a number of strategies: the

line-by-line analysis of the understandings of each

participant; the identification of the emerging patterns

from within the material; the development of ‘dialogue’

between the coded data and the researchers’

psychological knowledge and experience to capture and

reflect insight into the meaning attributed by

participants to their experiences.

The process involves verbatim transcribing of group

discussions and interviews to produce written

transcripts. Transcripts are then analysed in detail to

elicit key themes. The approach can be used to

understand themes that emerge within individual cases

and that are shared across cases. There are a number of

stages in this process. Initially, each interview transcripts

is read and re-read and annotated, highlighting anything

interesting or significant. Following this, the transcript is

annotated with emerging theme titles (Smith & Osborn

2003). These themes, once identified, are listed and

connections are made between them. Once each

transcript has been analysed, themes are clustered

together to create a superordinate themes. If a theme

lacks cohesion or is not of ‘rich’ enough data, it is

excluded from the analysis.

Care was taken to ensure that the content of the

emerging themes was grounded in the original data. An

Journal of Applied Research in Intellectual Disabilities 5

audit of the initial three interviews was carried out in

the form of independent analysis of the transcripts by

two of the researchers who then compared and

discussed in detail their emerging themes. Good

agreement was found.

Findings

The findings of the focus groups and the individual

interviews will be collated for the purpose of this

report. A number of common themes arose as well as

some unique or less common ideas and observations.

They are presented below with direct quotes from

participants to illustrate each theme. The quotes were

chosen to illustrate and clarify the themes and are

presented here verbatim. The themes are presented

under two headings to reflect two of the aims of the

present study (see above); themes relating to desirable

personal qualities of staff are first presented, followed

by themes relevant to the quality of mental health

services for adults with intellectual disabilities. Themes

will be illustrated by quotes taken from a wide range

of participants. The quotes used were checked to

ensure that not just a narrow section of participants are

included and that all participant groups are

represented wherever possible. A code after the quote

will identify which group the participant belongs to

(su = service user; rs = residential staff; cs = community

staff). It was decided not to identify participants

individually by their code numbers to ensure

anonymity.

The third aim of the study (suggestions for service

improvement and training/supervision) is addressed in

the Discussion in a less interpretative manner by

collating some of the factual suggestions for

improvement and adding a number of our own.

Desirable staff qualities

The qualities that, according to our respondents, are

most desirable for staff working with service users with

Intellectual disabilities and mental health problems

include: having a genuine interest in working with

people and building up trusting relationships within

professional boundaries; having good communication

skills and the ability to be open and honest yet gentle

and sensitive; providing support in a way that is

perceived as ‘competence promoting’ rather than

‘competence inhibiting’ (Tucker & Johnson 1989); and

being able to understand and acknowledge that past

experiences may have been central in causing current

mental health problems and may influence their

reactions to current events and interventions.

Being interested, not just there for the money

The most frequently mentioned desirable personal

qualities for staff were having a genuine interest in the

people they worked with, not having preconceived

ideas, the ability to spend time with service users and to

ask the ‘right’ questions and listen to what they had to

say.

Service users did not always experience these

desirable qualities, and one person reported that staff

members do not always ask the ‘right’ questions, for

example, “… it makes me upset because staff come and see

me and ask me why I’m in my room and not what is wrong.”

They valued staff “… who keep you company if you want

it” su

Service users appeared acutely aware that not all staff

have an interest in working with them and/or appear to

judge them. For example: “Some are too idle and don’t

always care. They do it for money, not to help people. The

ones that are good are interested …” su and “Some staff I

wouldn’t go to because they have a bad attitude. I go to staff

who listen to you and not judge you.” su.

Most staff participants expressed similar views to

those of the service users. They stressed the importance

of: “Getting to know each client on an individual basis” rs;

“Taking the time to know each client” cs; and reported as

bad practice those who “… haven’t got the time or they

don’t put the time aside to explore anything so they often see

the behaviour or the outcome of the [mental health] problem

rather than see it building up.” cs, indicating that if staff

spent more time with service users and took more

interest in them, they may avoid mental health crises

from occurring.

A number of staff spoke of the importance of being

interested in the service user, yet maintaining

appropriate boundaries. For example: “There need to be

very clear boundaries with the people that I work with about

‘this is acceptable and this is not, if you do this, this is the

consequence’ and you know that might sound quite harsh but

if that, if that doesn’t work or if someone backs down then it

is literally … I mean last week I had a person that has now

been admitted to [assessment and treatment unit] umm

because I don’t feel the boundaries were in place properly so

just the situation got out of control and very dangerous …”

cs.

Staff members were aware that having time together

with service users was the only way in which to

6 Journal of Applied Research in Intellectual Disabilities

develop a trusting relationship, which not only allowed

the latter to ‘open up’ but also gave them a sense of

being valued. For example: “I would be concerned

sometimes that people tell you what they think you want to

hear rather than what they feel and are thinking…..I’ve been

out with a client, he, he used to like going out for breakfast

so I used to meet him….and then after a while, he, he would

talk to me (and he had schizophrenia) and he would tell me,

he called the chap [the voice he heard] a name and he

would tell me he was sitting on his shoulder and telling him

stuff. So we were having this three-way conversation but

obviously you don’t get that until you’ve gained their trust

really. So I think it’s important to be yourself and be open

and honest and not promising to be able to cure everything

like that.” cs.

However, many staff complained that it was difficult

to find the time to spend with service users, as this

residential worker explained: “Not that I mind doing the

admin work, I do it, but to have proper time, not to feel

pressurised by having to do … not just your daily notes, it’s,

you might be key worker to somebody, you’ve got review risk

assessment things and lots of things what you’ve got to do….

having to think ‘yeah I really would like to help you do that

but today in the diary we’ve got this, and this and this and

there’s only two of us [staff] today.” rs.

Other personal qualities mentioned by staff which

indicate that working with this client group needs

genuine interest, commitment, dedication and flexibility

include “wanting to make a difference” rs; “like a terrier, we

get hold and we don’t let go” cs; and “going outside the job

description” cs.

Communication styles and techniques

Both service users and staff stressed the importance of,

and spoke at length about, the style in which to interact:

“A person who is quite open and approachable. Sometimes

that is quite hard to quantify … but I think there is an

openness and warmth …” cs; “..somebody who is not

removed, using lots of titles to hide behind” cs; “Someone

who asks the right questions” su.

The word ‘gentle’ was used by a number of staff. For

example: “… also just be quite umm gentle in your, well

you need to be able to judge a situation and, and then react

to it appropriately so that it’s a softly softly approach …” cs;

“… it’s gently, gently. You can’t force people to do things

and you know just because you think that it’s right, it might

not actually be right for them…..Just listening to them and

see what you can do.” cs.

Other interpersonal skills mentioned by staff were as

follows: being empathic, not blaming or judging,

showing respect, patience and being able to see “the

whole picture”. Service users stated that they appreciated

staff who “you can trust” and who “… believe in me”

indicating that they too value a sensitive, respectful

approach.

Knowledge of how best to communicate with adults

with intellectual disabilities and mental health problems

was mentioned as important. For example: “Some people

might have difficulty with the job because they can’t

understand people with learning difficulties.” su; “..Cos with

learning difficulties you know they get confused and you

know sometimes they can’t understand words if people am

talking too quickly or if they use jargon, you know stuff like

that …” rs.

Competence-promoting support

Service users and staff made a clear distinction between

supporting a person in a way that was helpful and

allowed them to gain confidence and independence on

the one hand, and input from staff that had the opposite

effect, on the other, that is, competence-promoting

versus competence-inhibiting support (Tucker &

Johnson 1989).

Service users appreciated staff members who “… are

helpful, helping their client to do their job” su; and “… show

you what to do instead of just telling you.” su.

What they found particularly unhelpful was when “…

they’re on your case all the time, telling you what to do …

they’re putting more pressure on you …” su; or when:

“They don’t really listen to you. They just want to put you

on a [college] course.” su.

Staff emphasized the importance of putting the

service users central to all decision making and

considering them as the ‘experts’: “Yeh, asking them what

they want and what they need coz they often know better

than anybody else….they quite often can tell you what they

feel they need” cs.

Awareness of link between past, present and future

Staff and service users considered it important that

anyone working with a person with ID and mental

health problems has the awareness that past history and

specific life events may have a significant impact on

mental health and on how the service user is likely to

react to events or interventions. For example: “A fair

number of people I work with have a diagnosis and that’s

often because of childhood experience. You’ve got to keep that

in mind” cs; and “… thinking back I think most men and

women [with mental health problems] come from really

Journal of Applied Research in Intellectual Disabilities 7

dysfunctional families where they have perhaps been in care

or their parents have had mental health difficulties or umm

they’ve just come from very poor backgrounds really. You can

see why they’re so withdrawn or angry.” cs.

Moreover, it was considered bad practice if the

workers were not provided with relevant background

information, something that residential staff frequently

reported, for example, “It’s so important to know what

they have been through but people come here and we are told

very little about their background or what they find nice or

scary … not much to go on really.” rs.

Service users also indicated they valued staff who had

knowledge of their past: “Someone who knows your

background and knows what you are going through and has

seen your files and things like that.” su.

Good quality services

The themes presented in this section concern the

qualities and operational policies of the relevant

organizations rather than the personal qualities of the

individuals working in the various systems. The

participants of this study, although able to describe good

practice in many instances, identified a number of

problem areas in current services. They were most

concerned about inadequate interface between

intellectual disabilities and mental health services; lack of

training in mental health issues and clinical supervision

provided within services; and the pressures imposed on

staff from managers in their organization resulting in,

what they considered to be, inferior service outcomes.

Prevention and early intervention

This theme concerns the importance of a responsive

service that service users can access at an early stage to

prevent mental health crises. Both residential and

community staff stressed the need for a flexible service

and for good liaison between the various sectors to meet

the needs of service users in a crisis: “… we have a

community nurse who’s brilliant you know. He comes and

gives us advice on how to do this and explains to us why this

might be happening and we thrash out about what we can

best do and that. Support from doctors and psychiatrists can

be really helpful, to like give us some tips and hints and tools

to work with to help that person and they’re pretty quick to

get here. They’re only a phone call away, you can call up for

expert advice coz we’re not experts really here.” rs; “If one of

my clients their mental health deteriorated, I’d go straight to

the consultant psychiatrist, seeking advice……And then

hopefully this pre-empts a breakdown. That’s happened, I’ve

got a client who lives up the road in a residential placement

and his mental health deteriorates on a yearly basis but the

team there are very, very skilled in noticing deterioration. So

they phoned me and then they phoned [psychiatrist] and

then we assessed. You know with, with this quick action he

hasn’t gone back to [local psychiatric hospital] for about 5

years. That’s success.” cs.

Service users valued a link person who could be

easily contacted by phone although many of their

responses indicated that they were resigned to a

delayed service response: “I’d go to my social worker or a

carer or a friend … If I have their number I’d call them and if

they’re not around I would make an appointment.” su.

Regular reviews and liaison

This theme concerns the importance of working

together, using good communication systems and

avoiding ‘passing the buck’ scenarios where service

users who are on the borderline of a number of service

are turned away, ending up as labelled ‘ineligible’

despite very real and complex needs: “We have been out

and assessed people who in our view may not have a learning

disability but they’re still vulnerable and they still need help

and so we try to signpost them to other services that will be

able to help them.” cs.

A residential worker spoke about the importance of

using good care plans so that “… everyone sings from the

same song sheet so to speak.” rs.

Team work and multidisciplinary collaboration was

considered an essential ingredient to avoid

inconsistencies in the approaches taken by the various

workers and possibly conflict and an overload of

information: “Yeh, good teamwork because people with

intellectual disabilities and mental health issues, they often

have a number of workers you know, they might be going to

college and then seeing me [social worker], they might be

seeing psychology, they might be having a support worker

come out so there are lots of different people. It can make

misunderstandings between the client and other people and

myself. And I think that can create umm both frustration and

uncertainty within the client so that can be a bit negative.” cs.

Both service user and staff participants appreciated

the importance of regular reviews and meetings: “We

have our annual reviews anyway and depending on their

[mental] health we’ll have more reviews, you know formal

professionals’ meetings.” cs.

There was an awareness that good teamwork must be

considered in the context of client confidentiality, and it

was understood that for certain professions (e.g.

psychology and counselling) to function effectively, the

8 Journal of Applied Research in Intellectual Disabilities

service users must be confident that what they say will

be kept confidential unless there is an identified risk to

them or others, or they request or agree for the

information to be shared. A community nurse stressed

the importance of letting the service user know what

will be kept confidential and what will not: “So crucially

it’s about communication [between staff] on a day to day

basis and passing on of information between each other. Now

that can be a problem in itself, especially if, well I have a lot

of people who say ‘the staff are talking about me’ and I have

to explain what that actually means. It’s up to the staff who

support them to say what they’ll need to pass onto the

next…” cs.

A service user who felt that confidentiality had been

breached stated: “I had this one worker and she said to me

that it was private and confidential what I said to her and

then she goes and tells my mum what I’ve said to her. So I

like people who keep things to themselves and not tell

everybody else …” su.

Working with carers

Staff participants but not service users often mentioned

the importance of having a ‘family-centred’ approach

(Rosenbaum et al. 1998) when service users are in close

contact or live with their family: “There are some families

who want a lot of support, there are other families who don’t

and so it’s just keeping an eye on that really and umm,

trying to help them in whatever way you can really.” cs.

A number of staff described the difficulties sometimes

encountered when family members (especially parents)

still consider their adult sons and daughters as ‘eternal

children’, for example, “We … work with families around

decisions cos it’s kind of getting people used to the fact that

this is an adult now, this is a person with their own

rights…”cs.

It was widely acknowledged that the needs of the

family as a whole must be considered and catered for

whenever possible as long as they did not clash with

the identified clinical needs of the service user. Some

workers spoke of negotiating with service users’

families over long periods of time to achieve outcomes

acceptable to all parties: “… it took them years to accept

that maybe she’d be better off living apart from them, it

worked out, it worked out really well.” cs.

Looking after staff

The participants frequently utilized the focus groups

and interviews as opportunities to describe the

challenges their various jobs entailed. Most of their

concerns related to excessive caseloads and paperwork

(referred to by one community worker as “feeding the

beast”), meaningless outcome measures, low staff

morale, poor or absent clinical supervision and being

prevented from doing the clinical work, which they felt

would benefit the service users best. For example: “…

this comes in and that comes in, oh well just give it to the

workers. No one sits and thinks ‘Now is that the best use of

that individual’s time?’…” cs.

A number of community staff mentioned that they

considered it their manager’s role to protect them from

the potential stresses imposed on them by the

organization but noted that good clinicians are often

promoted into posts, which are several steps away from

clinical work: “Well, there’s the whole thing about social

work in the news in the last couple of weeks … that people

with more experience will stay on the ground rather than

have to go up through the hierarchy…” cs.

They observed that some of their managers were

unable to empathize with their staff and more responsive

to the demands made by higher management. One the

residential team leaders interviewed described: “…

Whatever it is, the paperwork or whatever, issues that come up.

… They’ve got the people that live here, their issues and

whatever needs doing for them will come on top of the list. The

paperwork … what the organisation wants (coz obviously you

do have to show that things are being done otherwise contracts

can be lost. We’re all inspected on a regular basis….). So it’s

trying to balance between both… trying to get the staff to

understand that there is both. Both sides have to be done

unfortunately but there is a lot of duplication [of paperwork]

… sometimes it feels it could be better….” rs.

One community worker described a ‘protective’

management style she had experienced: “…we get a lot

of paperwork and things like that to do so it’s about making

things manageable for the staff… I think managers can talk

about what’s important to do and what’s not so important to

do and to prioritise things for staff …. and the manager I

guess is just protecting them from like this barrage … just

distilling the information and making it accessible.” cs.

Service users were aware that the staff need support

themselves: “They need a good gaffer (manager).” su; one

service user participant suggested a ‘payment by result’

measure to improve the quality of their working

practice: “Being paid more if they do a good job” su.

Staff training and supervision that is relevant and

ongoing

Service users considered it important that staff members

receive training: “People should have the right training for

Journal of Applied Research in Intellectual Disabilities 9

the job so they can do their job properly. People don’t always

know what the job involves.” su; one service user noted

that having students from the various professions on

placement was a positive thing for everyone, perhaps

noticing that having a ‘learner’ observing clinical

practice, inspired everyone to ‘be on their best

behaviour’: “I think that we should be treated equal but we

aren’t … it depends on how they are and if they have

students with them. [Facilitator: Do you find students

ok?] Yeah, yeah because they have to go back and report to

their boss.” su.

All staff interviewed stated that they considered

training in mental health issues essential for themselves

and for colleagues at all levels of the organizations: “…

because of the high level of mental health problems amongst

our [service users] … it should be part of the mandatory

training and it’s a shock to hear, even amongst my esteemed

colleagues, how little they think they’ve had in terms of

mental health training …” cs; “I’ve been banging on to my

line manager for 5 years, in my supervision and appraisals: I

want mental health training, I really want it! I feel this is

what’s lacking, this is what I feel I’d benefit from most.” rs.

Community team members stressed the importance of

including support staff who work in residential settings

in training initiatives as they considered them to be

highly influential in the psychological well-being of

service users: “Where someone [with mental health

problems] is living in a care home, they are reliant on those

people who care for them and so if they’re not caring for them

properly, they need education …” cs; “… and to provide on-

going consultation after that as well….because I think some of

the lower paid workers actually get the brunt of some of the

hard parts of the work and they might be faced with

something that’s really difficult and identifying that at an

early stage…” cs.

Many were disappointed with the training

opportunities. A number of staff reported that they

were self-educated in mental health issues: “I live in

[place] and there’s a centre run by Mind. I go there quite

often with my partner and they’ve got a big folder and any

new information I needed, I would go to the receptionist and

say ‘Can I have a copy of this?’ and they’d photocopy it for

me or I see like the duty officer … or there’s a carers group

which I know I can get information from, or the internet.” rs.

Topics that were most mentioned as important

aspects of their knowledge base relevant to mental

health include diagnosis; psychotropic medication; basic

counselling skills; psychology; relaxation techniques.

Staff participants were keen that training happened in

the workplace and as an ongoing process with

‘refresher’ courses available on a regular basis: “I think

we constantly need to be having some training. Coz when

you first start, you’re new on the team … If you’ve got a

caseload of about 50 clients it probably takes about 18 months

to go full circle. With that many clients and to get to know

them and know where they’re coming from, the families and

where they’re living and things. So training is obviously….,

you’ve got to keep up to date. There’s new legislation all the

time. There’s new understanding like dementia care. ..There’s

loads really and it’s just part of the job, to have training.” cs.

Good clinical supervision separated from the

management hierarchy was stresses by many of the staff

participants: “I think supervision is the key one isn’t it?….

we’re working with sometimes quite complex people…

supervision will sometimes answer some of those issues.” cs;

“… my line manager said to me at the time ‘[name] do you

enjoy supervision?’ And I said ‘Well to be perfectly honest,

no’. But you know…that was like the quality I was getting.

Well, now I’ve got supervision with somebody else so, it’s a

lot better…” rs.

Like this last respondent, a number of staff members

did not feel comfortable receiving clinical supervision

from their manager and preferred to receive supervision

from an experienced clinician, not their manager.

Training methods preferred by staff, other than

standard classroom teaching, included mentoring

schemes; peer supervision; having a clinical lead post

alongside the manager; reciprocal secondment/

shadowing schemes with colleagues in mental health

services; a clinical information group on mental health;

and through joint work with mental health colleagues.

Interface between intellectual disabilities and mental

health services

Although a number of staff respondents were able to

report on positive experiences of working together with

generic mental health services: “[I’ve] been able to work

with the mental health team and I even sat down with the

manager of that team the other day and she was offering to

put some of her workers into working with one of our people

who has a learning disability and mental health problems …”

cs, the majority of descriptions of the intellectual

disabilities /mental health service interface concerned

problematic issues.

The referral systems often resulted in negative

outcomes for service users and their carers and

supporters, leaving them in some instances without a

service or with a disjointed package of support: “I would

say she has sort of mild intellectual disabilities but mainly

Asperger’s syndrome. And umm, she also has, she can have

psychotic episodes but it’s never been diagnosed and can get

10 Journal of Applied Research in Intellectual Disabilities

very depressed from her awareness of her position….she’s a

very vulnerable person … I think there needs to be a sort of

senior manager level decision of who works with who so that

there’s not this drift.” cs.

Another problem described by staff concerned

hospital admission where mental health nurses are

unprepared for the specific needs of the service user,

resulting in less than adequate care: “… people with

intellectual disabilities being placed with [psychiatric]

hospital staff that haven’t got the knowledge to work with

them or might even find it quite frustrating to work with

somebody with a learning disability if they haven’t done

before….In an ideal world you’d hope that something’s more

there and that services would be more accessible … maybe

someone, a liaison who could work with the individual,

somebody in the middle who could bridge those gaps.” cs.

Liaison with Community Mental Health Teams did

not always result in good care co-ordination and mental

health colleagues appeared to be unwilling to remain

involved long enough to ensure effective interventions:

“Well, I think the mental health team, a couple of times they

were going to say ‘We’re not getting anywhere, he’s not

answering the door. You know we’re going to have to close

this case. We’ve got a lot of other cases on’ which I

understand but for us to see the guy we need mental health to

be good.” cs.

Finally, some of the intellectual disabilities care co-

ordinators noted that some mental health services were

not accessible for their service users: “I suppose when you

look at dementia and access for some of our people, accessing

things like memory clinics, I think that’s really quite poor in

[locality] where they just aren’t allowed to access the

memory clinics and therefore they’re not able to access the

drugs … I think that’s quite a travesty really.” cs.

Discussion

The themes presented above provide insight into the

day-to-day experiences of staff and service users. In

addition, staff as well as service users put a number of

innovative and constructive suggestions forward. These

are summarized below and grouped into cohesive

areas for service planning. The present authors have

added a number of ways in which some of the

problems identified by our participants may be

addressed.

The personal qualities that were perceived as

desirable in people who work with adults with

intellectual disabilities and mental health problems

include a genuine interest in people and specific

interpersonal styles and skills. This suggests that staff

selection, supervision and training are important in

recruiting and retaining a workforce, which possesses

the attributes, experience, knowledge and skills needed

to work effectively with this group of service users.

Ways in which this may be achieved are:

1. Include well-defined personal qualities in person

specifications and appoint service users on interview

panels to rate candidates according to those qualities;

2. Provide new staff with induction programmes, which

include shadowing of and mentoring by more

experienced colleagues;

3. Provide regular and ongoing individual supervision

for all by an experienced clinician/clinical lead to

review competency in interpersonal skills;

4. Managers briefed to protect clinical and support staff

from unnecessary administration duties and thus

enabling them to spend time with service users to

build up trusting relationships.

As working with adults with intellectual disabilities

and mental health problems requires knowledge and

experience in not just one but two complex areas of

clinical expertize, appropriate and ongoing training is

essential if workers at all levels (including at managerial

and professional levels) are to be adequately equipped.

The findings of a local audit of university teaching

(Rose 2011) indicate that professional courses do not

include this topic to any great extent. Services must

therefore prioritize:

1. Regular training to ‘top up’ knowledge and skills in

mental health issues such as counselling skills,

relaxation techniques, symptoms of mental distress,

impact of bereavement, abuse and trauma, and the

application and monitoring of psychotropic

medication;

2. Training to be prioritized and presented in a variety

of ways (not only classroom teaching) such as regular

clinical seminars/journal clubs/clinical information

groups organized by and for clinical members of

staff;

3. Learning disability and mental health staff groups to

share training events and exchange their knowledge

and expertize by reciprocal secondments and joint

information/journal clubs;

4. Liaison with local universities to ensure that clinical

training courses such as nursing, medicine, social

work and clinical psychology include adequate

training in the mental health needs of people with

intellectual disabilities.

Regular reviews and good liaison between

professionals were seen as an important determinant of

service quality by both users and staff. In the field of

Journal of Applied Research in Intellectual Disabilities 11

physical health, there is now evidence that regular

reviewing is highly effective in early detection and

thus prevention of more serious health problems

(Robertson, Roberts & Emerson 2009). It is therefore

suggested that:

1. Mental health is included in the standard health

checks, and relevant primary care staff is trained in

the symptomatology of mental health problems in

people with intellectual disabilities;

2. Such training is also given to residential support staff

in order for them to detect mental health problems at

an early stage and to have the knowledge and

confidence to refer these to, and discuss them with,

colleagues in psychiatry and psychology.

In the areas the present authors sampled, the ways in

which services respond to people in crisis appear to be

adequate and involve minimal delay in most cases.

Moreover, how the various professions work together in

MDT settings is appreciated by residential staff.

However, when a service user with intellectual

disabilities is admitted to a generic psychiatric ward, the

expertize of ward staff was said to be, at times,

inadequate.

Other ways in which the interface between

intellectual disabilities and mental health services could

be improved are:

1. Carry out joint assessments when a service user falls

in the ‘borderline’ of intellectual disabilities, mental

health, substance abuse and or forensic eligibility

criteria so that a joint care co-ordinating approach

can be adopted by the relevant services;

2. Create ‘virtual teams’ around service users to allow

professionals to cross service boundaries and work

together by each providing their particular area of

expertize, thus avoiding unnecessary and time-

consuming ‘battles’ between the services, which

result in exclusion or delay.

Generic mental health services appear to be, in some

instances at least, inaccessible to service users with

intellectual disabilities. Examples of inaccessible services

include memory clinics (Hejl, Hogh & Waldemar 2002)

and the ‘Improving Access to Psychological Therapies’

initiative (IAPT; Department of Health 2008). The latter

remains closed to service users with intellectual

disabilities in most areas despite a recent DoH

publication directing that services ensure that barriers to

accessing IAPT are removed for this population

(Department of Health 2009):

1. Local referral policies must be therefore be revised to

ensure that the Disability Discrimination Act is not

breached.

Finally, a number of staff respondents emphasized the

conflict of interest that often occurs between the clinical

needs of the service users and those of their families

and paid supporters. Possible ways of avoiding such

conflict are:

1. Adopting a ‘family-centred approach’ (Rosenbaum

et al. 1998) by which the needs of the family as a whole

are considered as important factors in determining

positive outcomes for an individual service user and

therefore must be considered or ‘signposted’ to other

services such as local carers support organizations;

2. Using a systemic therapy approach (Baum 2007)

adapted for people with intellectual disabilities when

working with families to avoid simplistic

explanations of psychological distress, which

attribute cause within one individual only, rather

than acknowledge the importance of interpersonal

and organizational factors in the occurrence and

maintenance of distress. Systemic approaches can

also be used when providing training and

consultancy services to residential staff groups.

Conclusions

Mental health services for adults with intellectual

disabilities, although improved in recent years by

preventative and multidisciplinary approaches, are still

lacking in both accessibility and quality. This study has

allowed service users as well as staff a voice and has

provided insights into their experiences and opinions,

identifying strengths and weaknesses of current services

and a number of relevant suggestions for service

improvements including training and supervision

programmes. Each of these suggestions will require

further research and consultation. Nevertheless, the

present authors consider this research to be an

important step in further developing evidence-based

services informed by, and responsive to, the needs of

service users and staff.

Acknowledgment

We would like to thank the Judith Trust who have

funded this research.

Correspondence

Any correspondence should be directed to Biza Stenfert

Kroese, School of Psychology, University of

Birmingham, Birmingham B15 2TT, UK (e-mail:

b.stenfert-kroese@bham.ac.uk).

12 Journal of Applied Research in Intellectual Disabilities

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