Original research ❚ Intellectual disabilities
Intellectual disabilities: improving
access to therapeutic communities
Farshad Shaddel MD, MRCPsych, SFHEA, HSCL, Marjan Ghazirad MD, MRCPsych, DOccMed, AFHEA,
Subimal Banerjee MD FRCPsych, DNB (Psych),Christopher Newrith MBChB, MRCPsych, MSc
Access to specialised therapeutic communities (TCs) for people with intellectual
disabilities (IDs) such as ‘Camphill communities’ and ‘TCs plus’ is limited and patchy in the
UK. Nonetheless, the emphasis for some time now has been to enable people with IDs to
access mainstream services, which have a legal duty to make reasonable adjustments to
facilitate this. Here, the authors propose a set of recommendations in order to improve
the access of people with ID to mainstream therapeutic communities and enhance the
services they receive.
I
ntellectual disability is recognised by IQ less than 70 and significant difficulties in coping and
social skills in addition to cognitive
disabilities1 started at the developmental stage.
Epidemiologically, IQ forms
the basis of comparison between
studies, and IQ <50 is generally
used to define ‘severe’ intellectual
impairment, with prevalence
between 0.16 and 0.73%2 in contrast to ‘mild’ intellectual impairment group with IQ between 50
and 69 (prevalence of 2.27%).2
The experience of stress negatively impacts the psychological
well-being of adults with ID. Adults
with mild ID report experiencing
more frequent and severe stress
from negative social interactions
compared with other categories of
stressful events3,4 and have greater
difficulty coping with stressful
social interactions than other categories of stressful events.5–7 They
may present with self-harming
behaviours and social conflicts,
which cannot be solely explained
by their low intelligence. Such individuals utilise more ‘avoidant’ coping strategies (a maladaptive
coping strategy related to symptoms of depression and anxiety due
to avoidance or disengagement
from a stressful situation or one’s
30
emotions) and fewer ‘active’ coping
strategies (efforts to gain control
over a stressful situation or over
one’s emotions) to deal with stressful social interactions than other
categories of stressful events.5–7
Psychotropic medication is
widely used in individuals with disabilities: between 30% and 40% of
individuals receive psychotropic
medication. Polypharmacy rates
vary between 5% and 10%. In hospital settings use of antipsychotic
medication varies between 22%
and 45%, and in the community it
is used in about 20% of cases. 8
One study in the UK has suggested
that up to 40% of people with
mild-­to-moderate learning difficulties fulfil the criteria for severe
personality disorder.9
A significant number of people
with ID have limited cognitive
resources to cope with life experiences that often include isolation,
facing abusive or neglectful
circum­stances during their formative years. These individuals are
more likely to use ‘problem-­
focused’ coping strategies that
develop earlier than ‘emotion-­
focused’ coping, which requires
complex lang­uage and metacognitive capabilities to alter negative
affect.10,11 Problem-focused coping involves attempts to alter the
Progress in Neurology and Psychiatry November/December 2016
stressful situation itself, while
emotion-­focused coping involves
efforts to alter negative affect surrounding a stressful situation.12,13
This is likely to lead to unmet needs
in their primary emotional experiences and therefore they are likely
to benefit from joining the TC.
Psychological interventions
such as ‘dialectic behavioural therapy’ (DBT) and TCs are considered as treatments of choice for
personality difficulties.14,15 The
main aim of group therapies is the
formation of healthy personality
by providing the necessary primary emotional development
experiences, by addressing issues
of attachment, containment, communication, inclusion and agency.
These can be deliberately recreated in therapeutic environments
to form a structure for ‘secondary
emotional development’.16
TCs are ‘psychologically
informed planned environments’
where the social relationships,
structure of the day and different
activities are all designed to help
individuals’ health and well-being
through the core principles of
democratisation, permissiveness,
reality confrontation and communalism. TCs are typically structured
so that the ‘working day’ is divided
between formal psychotherapeutic
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Intellectual disabilities ❚
activity (small group therapy and
community meetings) and educational/occupational activity (eg
skills training, occupational therapy sessions). The remainder of
the TC day, including meal and
leisure time, is intended to provide
positive, pro-social experiences.
Community members are encouraged to be involved in planning
community activities.17
A modified therapeutic community programme has been proposed in order to help this
vulnerable and deprived population. 18 There are few papers in
favour of specialised TC for people
with ID.19,20 Currently in the UK
there are two specialised organisations using TC models for people
with ID. One of them is called
‘Camphill communities’ and the
other ‘TC plus’.19,20 The main critiques are the lack of level I and II
evidence, highly specialised pathway, limited in number and difficult
to access for most patients with ID.
Camphill group communities
were developed in the 1940s and
were originally known as intentional communities. Members of
the community live and work
together as active participants in
each other’s lives. Community members and staff members share the
work required for communal living,
with staff taking on a facilitator/­
mentor role, rather than a traditional staff/resident role division. A
strong value set underpins the principles of Camphill communities,
which promotes a spiritual model,
while providing a sense of belonging for people who are often marginalised within wider society. The
group consists of only 23 communities in England and Wales and
includes independent residential
and day schools, specialist colleges
of further education and adult
communities where each individual’s abilities and qualities are recognised and nurtured as the
foundation for a fulfilling life
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Original research
1 Identify the strategy
for improvement
7 Implement
improvement
2 Define what you
will measure
6 Present and use the
information
3 Gather data
5 Analyse the
information
4 Process the data
Figure 1. Seven-step improvement process concept. Adapted from
www.cherwell.com/blog/7-steps-to-continual-service-improvement-csi-success
(more information at: www.camphill.org.uk). Other specialised
TCs are established in prisons for
offenders with ID.
TC plus is a pilot study launched
by HMP Dovegate. Rampton hospital has launched a similar service
in recent years as well.19,20 Outcome evidence from an evaluation
of the treatment model developed
in the National High Secure Learning Disability Service at Rampton
Hospital 20 suggested that at 12
months rates of seclusion were
found to have dropped by 70% for
men (all with mild ID) who resided
in a TC, while a comparison group
receiving treatment as usual (TAU
– including offending behaviour
programmes and DBT) demonstrated an increase in seclusion
rates over the same time period.
Staff rating scales measuring internalising problems such as anxiety
and somatising also indicated significant improvement in the TC
group over time, and particularly in
relation to the TAU group.
Despite much evidence in favour
of using group therapy, family therapy and supportive psychotherapy
in people with IDs,21–3 there has
been no publication focusing on the
use of generic therapeutic communities in people with ID and personality disorders. In addition, it is
accepted that low IQ would decrease
the opportunity for adequate treatment and warrants some adjustments to the services.24
The aim of this project is to propose a set of recommendations in
order to improve the access of people with ID to mainstream therapeutic communities and enhance
the services they receive.
Method
To achieve the aim of the study, we
used the ‘seven-step improvement
process’ model introduced by
Information Technology Infrastructure Library (ITIL) as our conceptual framework. The model is
conceptualised in Figure 1.
Stages 1–3 of the seven-step
improvement process are compatible with methods in academic writing. Stages 4 and 5 could be
considered as findings and conclusions. Disseminating the recommendations through publishing the
paper in an esteemed journal and
implementation of them by mental
health professionals will close the
loop by providing stages 6 and 7.
Progress in Neurology and Psychiatry November/December 2016
31
Original research ❚ Intellectual disabilities
Identify the strategy for improvement
We chose the strategy defined by
the Department of Health in
2001:25 ‘Emphasis now is to enable
people with ID to access all generic
services, who have a legal duty to
make reasonable adjustments to
facilitate this.’
In addition, the emphasis for
some time now has been to enable
people with ID to access all mainstream services, which have a legal
requirement under the Equality
Act 2010 to make reasonable
adjustments to facilitate this. Similarly, recent guidance for commissioners of mental health services
for people with ID suggests that
services be provided alongside
mainstream mental health services
so that the skills and expertise
from both can be employed to
respond to individual need.26
Define what you will measure
Given the practical approach of this
The phenomenology method is used in order to develop an understanding
of complex issues that may not be immediately implicit in surface responses.
This was developed by Schutz (1967) as a method that incorporated details of
experience often at the level of mundane everyday life. Therefore, the results
of phenomenological enquiry are ‘a direct description of our experience
without taking account of its psychological origin’. Phenomenology is
a critical reflection on conscious experience, rather than subconscious
motivation, and is designed to uncover the essential invariant features of
that experience.
With regard to the process of enquiry, the phenomenologist has only
one legitimate source of data, and that is the views and experiences of the
participants themselves. This in itself assumes that the participant’s view is
taken as ‘fact’. Furthermore, participants are selected only if they have lived
the experience under study. Sampling is therefore purposive and prescribed
from the start and the main instrument of data collection is the interview.
The collection and analysis of data using this methodology is also
specifically prescribed. Phenomenology demands that intense reflection is
an integral part of the process, but above all, the primacy of the subjective
experience is felt to be crucial. Analysis is conducted by scrutinising the text.
Analysis of three qualitative strategies for meaning ‘units’ that describe the
central aspects of the experience. These are then synthesised to provide a
general description of the ‘whole’.
Ethnography attempts to explicate structured patterns of action that are
cultural and/or social rather than merely cognitive, behavioural or affective.
It has potential for the studying of lifestyles given the cultural or sub-cultural
context within which they are enacted. Ethnography, therefore, has its own
distinct procedures for collecting data, which always involve prolonged
direct contact with group members in an effort to look for rounded, holistic
explanations. The hallmark of ethnography is fieldwork; working with
people in their natural settings. The voices of participants are an important
source of data and should be allowed to be heard in the written end-­
product, which should be a coherent, fluent and readable narrative.
The potential for ethnography lies in applying multiple data collection
methods at a single phenomenon. These may range from surveys to
observational data, video tapes, photographs and recordings of speech in
action. With regard to the analysis of ethnographic data, this involves the
search for patterns, and ideas that will help explain the existence of these
patterns, taking into consideration emic and etic interpretations. Emic and
etic refer to two kinds of field research done and viewpoints obtained. The
emic perspective, or how the clients perceive the service, is at the heart of
ethnography, while the etic perspective is the researchers’ abstractions or
scientific explanations of reality.
Box Phenomenology and ethnography. (Summarised from Goulding 2004.)27
32
Progress in Neurology and Psychiatry November/December 2016
service improvement project, we
focused on the following aspects:
• reviewing the possibility of using
generic TC for people with ID
• identifying the pros and cons
• and finally, recommending
required adjustments.
Gather the data
To achieve the objectives outlined
above we needed the application
of qualitative methods in their
most fundamental sense in order
to gain valid insights, develop theory and aid effective decision making. We chose two methods that
have seen a steady growth in their
application both in academic circles and in marketing research.
These are phenomenology and
ethnography (see Box).27
To collect data FS joined a
generic TC for eight months and
visited a TC plus with MG for direct
observation and contact with clients, hearing their voices and living
the experience. In addition, in-­
depth interviews were conducted
with a few consultants in ID, a consultant psychiatrist in psychotherapy, and a senior therapist at the
generic TC (April 2013–May 2014).
The collected data were processed by triangulating the direct
observations and opinions with literature, individual and group
reflection of authors in order to
establish patterns and how to use
them to improve the current practice. All authors are experienced
practitioners and researchers with
previous publications in qualitative
and analytical studies in the field.
As this was a service improvement
project, there was no requirement
for ethical approval. No patient was
interviewed for this project.
Findings and conclusions
Process the data
Suitability / eligibility assessment
It is often a challenge to identify the
right patient who would benefit
from joining a TC, even if they do
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Intellectual disabilities ❚
not have ID. The lead consultant
in Aylesbury quotes: ‘it is almost
impossible in any case to predict
who may benefit from joining TC
with any degree of accuracy’. Many
TCs use checklists to improve
objectivity of their case selection
by having a ‘preparation group’ or
similar pre-treatment sessions. In
Aylesbury TC we used the Psychological mindedness, Ego strength,
Motivation, Empathy and Linking
(PEMEL) checklist, which has
been developed based on the
experience and expertise of our
therapists and our lead consultant
psychiatrist in psychotherapy.
TC staff are of the opinion that
people with ID would struggle with
almost all of the above mentioned
criteria, as the minimum requirement for demonstrating these abilities would be the presence of
language and ability to communicate feelings and thoughts. In addition, people with moderate and
severe ID tend to have significant
difficulty in putting themselves in
other people’s shoes (empathy).
People with autistic spectrum disorder, including Asperger’s syndrome, might have difficulty with
this aspect, even with a higher IQ.28
On the other hand, one study
has reported a high intrinsic motivation to improve in some people
with ID.29 In addition, it is widely
recognised that people with intellectual disabilities are able to learn
the link between behaviour and
reward/consequence. Therefore,
the use of the PEMEL checklist to
find the suitable candidates seems
even less appealing in people with
ID. We could not find any checklist
in the literature developed specifically for people with ID.
Likewise, it is also difficult to
predict who is not a suitable candidate for referral to a generic TC.
However, it seems that clients with
moderate to profound ID, no/
limited speech or with prominent
autistic features would benefit from
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using ‘specialised TC’ rather than
‘generic TC’.
Therapeutic communities use
socio group therapy and the ‘living
learning experience’. This means
that accepting a member with ID
could have wider implications on
other members and staff as well as
the client themselves. As there has
been very limited (if none at all)
experience of having a client with
ID in a generic TC, we can only
speculate about these challenges.
Client with ID
To conceptualise the challenges of
treating patients with ID at the
generic TCs, we can look at the
functions of group therapy and
expected outcome of treatment,
which in this case is the formation
of healthy personality. Foulks and
Bion described the specific functions of group therapies as: socialising, exchange, mirroring, chain
phenomena, resonance and condenser phenomena.
Given that people with ID often
have multiple experiences of
exclusion and isolation in their
lives, it seems that they would benefit from the socialising function
of TC if accepted by other TC
members. However, their vulnerability might be considered as a barrier or concern. However, the
anecdotal experience of one of
the senior therapists suggested
otherwise. She believed that communities are usually very protective of their vulnerable members.
People with ID are more likely
to receive and accept information
from the group they belong to18
and to mirror and learn behaviours from others. This might raise
the concern about their suggestibility and mirroring of maladaptive behaviours.
The other three functions of TC
are more abstract and meta-­
cognitive. It is more likely for people with ID to struggle with these
functions and some considerations
Original research
might be needed in this part to
facilitate their access to generic TC.
The gradual withdrawal of psychotropic medications and other
therapeutic input in the first few
months is a widely accepted rule in
TCs. This could have implications
for people with ID who are often
on polypharmacy and receive significant support from ID services.
It would be probably difficult or
even harmful for them to stop all
of these in such a quick and
unyielding fashion. Some considerations in this regard for this client group might facilitate their
smooth transition to a new service.
This might have some implications
for other TC members as well.
Other TC members
The authors carefully observed the
similarities and differences of a
generic TC and a TC plus. This
suggested the possibility of the following implications for other TC
members if a client with ID were
included in the community.
Firstly, the pace of sessions
would probably need to be reduced
and there may be a need to repeat
some abstract concepts and links.
In addition, some TC members
might feel anxious about their ability to communicate appropriately
with individuals with ID. This might
even discourage them from giving
comment or feedback to them during group activities.
The other implication could be
due to extra support TC staff
would need to provide for the individuals with ID. In addition, clients
with ID might need to be exempted
from some jobs/roles such as secretary or treasurer. Both these factors can poten­tially generate a
sense of favour­itism, which in turn
would inc­rease the risk of bullying
(either way).
TC staff
Having a client with ID probably
would have important implications
Progress in Neurology and Psychiatry November/December 2016
33
Original research ❚ Intellectual disabilities
for generic TC staff too. The first
and most obvious one is the need
for extra training in communication and specific/generic issues
associated with this group of clients. Communication difficulties
are well known in people with ID:
developing the communication
skills of TC staff would facilitate
therapeutic interventions in people
with ID.30 There is some evidence
that having a pupil with ID causes
distress for the teacher and it is
likely to be the same for TC staff.
One study suggested that staff
cannot always expect people with
ID to ‘perform’ as well as others.18
Therapists may have to be more
forth­coming and direct with them:
they might need to take a more
active, less ‘neutral’ role. Since people with ID have some difficulties
with thinking and in problem solving at the same speed as their
non-disabled peers, appropriate
‘supervision’ would assist them to
take decisions, resolve conflicts and
avoid drifting away from social
interactions. However, it will be
important for staff to keep the fine
balance between being forthcoming and not coming across as dominating and controlling.
The other important implication could be the role confusion.
Staff need to be more proactive in
dealing with people with ID in comparison with their usual clients.18
In addition, they would need to
monitor and deal with the implications for other TC members such as
favouritism and bullying.
Analyse the information
While we acknowledge the exploratory nature of this paper based on
anecdotal experiences and personal opinions (evidence level 4
and 5), our paper is original and
aligned with the current emphasis
of the Department of Health to
facilitate the access of people with
ID to generic services and the current NHS England 31 and Royal
34
College of Psychiatrists guidance32
to reduce pharmacological interventions in people with ID.
Overall, it is the authors’ opinion
that it is possible to use generic TCs
for people with ID. Nonetheless, this
would need some important considerations. First, the vulnerability and
suggestibility of people with ID
should be carefully and constantly
considered/monitored by staff. This
would minimise the risk of bullying
and reinforcement of maladaptive
behaviours. However, this could be
a source of anxiety for staff and
therefore an appropriate process
should be considered to contain it.
These processes are usually supervision, debriefing and reflection.
Therefore, the senior staff, and ultimately the consultant psychotherapist, would need to have a good
grasp of ID-related issues and concepts as well as staff on the ground.
This overall improvement in
the knowledge and skills of TC
staff could be conceptualised
under the term of ‘growing of the
TC’. This qualitative change would
need an initial input from ID services and then gradual withdrawal
of external support while the TC
evolves internally.33,34
In addition, to facilitate and
optimise the use of generic TCs for
individuals with ID, the screening
criteria for this group need to be
reviewed and evolved. This could
be achieved by further integration
of the assessment of suitability of
attending the ‘preparation groups’
where extra work on ‘emotional
intelligence’ could be started and
continued all the way through.
This extra work for people with
ID could potentially raise the concern of favouritism and resentment
in other TC members. However, this
extra module on ‘emotional intelligence’ could be made available to
everyone as an optional opportunity; as long as the staff bring back
what happens there to the TC community, it would seem compatible
Progress in Neurology and Psychiatry November/December 2016
with the current TC model. The
same principles should apply to the
difference in approach of staff
toward people with ID in comparison with other members. Actually,
their response and approach could
already be very different toward TC
members based on their individual
personality traits and needs.
In summary, it seems that the initial anxiety of staff to accommodate
people with ID in a generic TC is the
biggest challenge that needs to be
addressed if this service improvement is to be introduced. Firstly, the
appropriate time to initiate any
change should be chosen at a relatively stable time for the TC and ID
staff. Secondly, a period of demystifying and cross-fertilising of TC and
ID staff seems useful. This could be
achieved through co-contributing
by some ID staff to run preparation
groups. This would improve the
mutual understanding, skills and
knowledge of both groups and, as a
result, decrease the initial anxiety.
The main counter-arguments to
our proposal are the threats and
scepticism about the future and efficiency of generic TC itself. There
are still strong positive and negative
feelings toward effectiveness and
the cost efficiency of this method in
the current financial climate. However, NICE still recommends it as an
effective therapy mode for the treatment of people with complex
psycho-­social problems.35
It is difficult to confidently envisage the cost and resources needed
to implement this model across the
country due to significant heterogeneity of current therapeutic communities and their current
resources. Although our anecdotal
observation suggests that the costs
should be nominal because a
change to staff’s attitude and
addressing their anxieties, are the
main steps toward the successful
implementation of the model.
It is also important to acknowledge the possibility of teething
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Intellectual disabilities ❚
problems and unforeseen issues,
for example, about the withdrawal
of psychotropic medication in people with ID. These issues could be
thought through the ‘living learning experience’ at the TC.
A carefully designed pilot
implementation of our model in
one or more TCs would be the
next logical step. Such pilots
should aim to study the qualitative
impacts on staff, patients and
other service users as well as measuring quantitative indicators of its
effectiveness (such as the need for
psychotropic medication, number
of challenging behaviours, etc).
The vision is integrated and routine access for people with intellectual disability to mainstream TCs
across the country where staff and
service users feel competent and/
or empowered to work effectively
with this deprived group of clients.
Dr Shaddel is a Consultant Psychiatrist
in Learning Disabilities at Berkshire
Health­care NHS Foundation Trust and
an Honorary Senior Clinical Lecturer at
the University of Oxford; Dr Ghazirad has
been a Specialist Registrar in Psychiatry
of Learning Disability at Oxford deanery,
Oxford; Dr Banerjee is a Consultant
Psychiatrist in Learning Disability,
Hertfordshire Partnership University NHS
Foundation Trust, Amersham, and Dr
Newrith is a Consultant Psychiatrist in
Psychotherapy, Oxford Health NHS
Foundation Trust, Aylesbury.
Acknowledgement
With special thanks to Dr Rajnish
Attavar, Consultant Psychiatrist in
Learn­­ing Disability, Ms Melanie
Feather­stone, Senior Psychotherapist and team leader for Buckinghamshire TC services, Dr Barbara
Hurtado, Principal Clinical Psychologist and Mark Bryant, Outreach Librarian for their valuable
contributions.
Declaration of interests
No conflicts of interest were declared.
www.progressnp.com
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