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Living with a hoarding condition in Hackney -
who am I and how does this affect my daily life?
Prepared by Breda Spillane, M Sc., B Arch. On behalf of Making Room, part of MRS
Independent Living.
Making Room is part of MRS Independent Living. MRS Independent Living is a registered charity no 801419.
Executive Summary
Hoarding behaviour has been recognised as a distinct disorder in the latest edition of
Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5). This will
have implications across all sectors of health and social care provision in the UK.
This research considers evidence from data gathered by MRS Independent Living
which has identified a population of adults living in Hackney who have hoarding
behaviours and compares the profile of this little-known population against existing
findings. It also begins to investigate the potential additional impact a hoarding
disorder has on isolation, social arrangements and relationships and accessing
support and resources within the borough.
Findings demonstrate that while there is a population of Hackney residents with
hoarding behaviours, there are no clear pathways to access support within existing
health and wellbeing services. This research recommends a multi-strategy response
to ensure the needs of people with hoarding disorder are acknowledged and
responded to with appropriate provision, and that the borough has a robust and
flexible strategy to support and respond to individual needs within a structured and
considered framework.
The recommendations from this piece of research are as follows:
To establish clear pathways for individuals with hoarding behaviours to access
support. This would include identifying first points of contact, and developing a
model with adequate flexibility within support options to meet personal needs.
To develop access to services that can provide information and straightforward
access to financial advice within in a supportive context to help people purchase
appropriate services to manage their condition including options such as direct
payments, grants and brokerage support.
To identify and appoint a lead individual, agency or partnership to identify and
manage multi-agency support for individual support needs.
To develop and launch an awareness campaign within support services
(health and social care) and across the borough as soon as possible.
To develop of a training programme to provide front-line staff with the skill-set
to respond appropriately and sensitively to the needs of the individual.
Develop an awareness campaign for residents of Hackney, as part of an
overall strategy to establish clear pathways and ensure appropriate health
and support services are available to meet the needs of existing and newly
identified residents with hoarding behaviours.
Design, produce and commit to a hoarding protocol for the borough. In line
with Hackney policies it should be user facing, give a lead role to the client
group, and respects the autonomy, dignity and choice of people with a
hoarding condition.
Executive Summary
1. INTRODUCTION
1.1 MRS Independent Living
1.1.1 Making Room – part of MRS Independent Living
1.2 Introduction to Hoarding Disorder
1.2.1 Definition of hoarding
1.2.2 Prevalence of hoarding in the UK
1.2.3 Current legislation to support people with a hoarding condition
1.3 Current population trends in Hackney
1.3.1 The London Borough of Hackney – an overview of housing tenure
2. RESEARCH METHODOLOGY
2.1 Stage 1: Quantitative Methods
2.2 Stage 2: Qualitative Methods
3. RESULTS
3.1 MRS Independent Living Dataset
3.1.1 Analysis of sample with hoarding behaviours in Hackney by age, gender, housing
tenure and ethnicity
3.1.2 Analysis of wellbeing of sample with hoarding behaviours in Hackney by disability
and mental health diagnoses.
3.2 Themes from one-to-one Interviews
3.2.1 Introduction
3.2.1. Theme 1: Loss / trauma
3.2.2. Theme 2: Physical and mental wellbeing
3.2.3. Theme 3: Negative experiences accessing support services
3.2.2. Theme 4: Self-management of hoarding behaviours
4. FINDINGS
4.1 Evidence of a population of Hackney residents with recognised hoarding behaviours.
4.2 Similarity and relevance of themes identified from interviews.
4.3 Conclusions
5. RECOMMENDATIONS
5.1 Recommendations for the individual who recognises their hoarding condition
5.2 Recommendations for health and wellbeing services in the borough of Hackney
References
Appendices
1. INTRODUCTION
‘Living with a hoarding condition in Hackney - who am I and how does this affect my daily
life?’
The definition of hoarding disorder in the fifth edition of the Diagnostic and Statistical
Manual of Mental Disorders (DSM) as a unique and specific mental health condition will
have implications across all sectors of health and social care provision in the UK.
This research considers published results against a cohort of Hackney residents who have
demonstrated hoarding behaviours, and compares the profile of this little-known population
against existing findings. It also begins to investigate the potential additional impact a
hoarding disorder has on isolation, social arrangements and relationships and accessing
support and resources within the borough.
1.1 MRS Independent Living
MRS Independent Living (formally known as the Mobile Repair Service) is a user-led
organisation, working with disadvantaged and socially excluded sections of the community
in north-east London. Established over 25 years ago, MRS Independent Living has evolved
to currently provide a range of services within the area including low-cost repairs for older
and disabled people, a home-from-hospital service, telecare services, provision of aids and
adaptations and free safety checks and remedial work for older people. Most recently, it has
become the unofficial point of referral for service to identify hoarders within the London
Borough of Hackney.
Through delivery of the MRS Independent Living’s core service - a low-cost repair service –
vulnerable adults with hoarding behaviours were identified, but no established pathways of
support within the borough were available. MRS looked at research evidence, met and
corresponded with others in this area in the UK and in other countries and found expert
support within Hackney Community Mental Health team (HCMT).
In June 2011 MRS Independent Living co-hosted an event with HCMT to openly discuss
the needs of this population of vulnerable adults within the borough. Over 100 participants
attended, reflecting a cross-section of representatives from mental health, housing and
social services from the statutory and third sector services within the borough. The
feedback was almost unanimous in recognising the current lack of services specifically
designed to support hoarders, and the need for an alternative approach that recognises that
this is a multi-sectoral problem that organisations cannot resolve on their own.
MRS Independent Living designed a pilot programme of support based on the research and
toolkit of Dr. RO Frost and has supported over 40 vulnerable adults with hoarding disorders
in the borough. From this pilot, MRS Independent Living has developed Making Room, a
specific service for people with hoarding disorder in Hackney.
1.1.1 Making Room – part of MRS Independent Living
Making Room provides direct support to people with a hoarding disorder, actively working in
partnership with social and private landlords where relevant. Using the extensive practical
experience gained through the pilot, Making Room has developed a working toolkit and
outcome-driven framework of targeted support using a combination of trained staff and
existing support services within the borough.
This approach empowers clients to identify, set and achieve their own priorities and
personal goals for change. The co-ordinated support offers psychological and emotional
therapy in parallel with practical support, going beyond the current support models which
focus on the environmental conditions.
1.2 Introduction to Hoarding Disorder
Hoarding was for the first time recognised as a medical disorder in the release of the fifth
edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5) by the American
Psychiatric Association Publication (2013) under the section Obsessive Compulsive and
related disorders. The following table outlines the diagnostic criteria for hoarding disorder
in DSM-5 (source: Mataix-Cols et al. pg. 609, 2014). It is important to note however, that
despite this listing in the DSM-5, hoarding is not yet regarded as a disorder in the UK.
“Table 1 Provisional diagnostic criteria for hoarding disorder in DSM-5
A. Persistent difficulty discarding or parting with possessions, regardless of their actual
value.
B. This difficulty is due to strong urges to save items and/or distress associated with
discarding.
C. The symptoms result in the accumulation of a large number of possessions that fill up
and clutter active living areas of the home or workplace to the extent that their intended use
is no longer possible. If all living areas are uncluttered, it is only because of the
interventions of third parties (e.g. family members, cleaners and authorities).
D. The symptoms cause clinically significant distress or impairment in social, occupational
or other important areas of functioning (including maintaining a safe environment for self
and others).
E. The hoarding symptoms are not due to a general medical condition (e.g. brain injury and
cerebrovascular disease).
F. The hoarding symptoms are not restricted to the symptoms of another mental disorder
(e.g. hoarding due to obsessions in obsessive-compulsive disorder, decreased energy in
major depressive disorder, delusions in schizophrenia or another psychotic disorder,
cognitive deficits in dementia, restricted interests in autism spectrum disorder, food storing
in Prader–Willi syndrome).
Specifiers
Specify if with excessive acquisition: If symptoms are accompanied by excessive collecting
or buying or stealing of items that are not needed or for which there is no available space.
Specify whether hoarding beliefs and behaviours are currently characterized by:
• Good or fair insight: Recognizes that hoarding-related beliefs and behaviours (pertaining
to difficulty discarding items, clutter or excessive acquisition) are problematic.
• Poor insight: Mostly convinced that hoarding-related beliefs and behaviours (pertaining to
difficulty discarding items, clutter or excessive acquisition) are not problematic despite
evidence to the contrary.
• Absent insight (delusional): Completely convinced that hoarding-related beliefs and
behaviours (pertaining to difficulty discarding items, clutter or excessive acquisition) are not
problematic despite evidence to the contrary.”
1.2.1 Definition of Hoarding
Compulsive hoarding is characterised by
(a) acquisition of and failure to discard a large number of possessions;
(b) clutter that precludes activities for which living spaces were designed; and
(c) significant distress or impairment in functioning caused by the hoarding (Frost and Hartl,
1996).
It can be difficult to identify a person who hoards as the indicators are not always clear and
not all hoarders carry the same characteristics. A case may be considered as hoarding if
“the clutter is so severe that it prevents or precludes the use of living spaces for what they
were designed for”.
The consequences of extreme hoarding impact on the private, social and occupational life
of the individual as well as their domestic environment. Frost & Hartl (1996) found that the
degree of clutter can impede the completion of household chores and lead to relationship
conflict, embarrassment, social withdrawal and the inability to work. Furthermore, severe
hoarding can pose serious risks to the health and safety of the occupant, specifically falling,
fire and sanitation problems, and these risks are especially common amongst older people
with hoarding disorders (Frost et al 2000). There are implications to domestic relationships
and the wellbeing of relatives of those with hoarding disorders too. An internet based
survey by Tolin et al (2008) found higher rates of frustration among the families of those
with hoarding disorder compared to the families of those seeking OCD treatment.
It is important to note that while the DSM-5 lists hoarding disorder as an obsessive
compulsive disorder (OCD) Mataix-Cols et al (2014) refer to the growing evidence
supporting the argument that the majority of hoarding diagnoses are not OCD related.
Previous research has found that the majority of individuals with hoarding problems (over
80%) do not display other OCD symptoms. Furthermore Frost et al. (in press) have found
that the most common co-morbidities found in those with a hoarding disorder are
depression and anxiety disorders. Yet, clinicians do not ask about possible hoarding
disorders when treating patients with anxiety disorders.
1.2.2 Prevalence of Hoarding in the UK
The DSM-5 proposes that the prevalence of hoarding disorder is between 2% and 5% of
the population.
A number of studies have found abnormally high levels of trauma or stressful life events
amongst people who hoard (Cromer et al. 2007) while early material deprivation has been
dismissed as a possible link to hoarding disorder by Frost and Gross (1993) and Landau et
al (2010).
Grisham et al (2006) identified that while some individuals appear to begin hoarding as a
response to a stressful life event, others make a slow and steady progression into hoarding
behaviours throughout their lives. They recommend targeted treatment programmes
matching the pattern of onset and progression of hoarding behaviours. Individuals with a
late onset of hoarding symptoms in response to a stressful life event may benefit from
treatment that focuses on coping with depression and stress. Longer-term treatment
including interpersonal skills and organisational skills training may be more appropriate for
individuals with an early age on onset.
Family studies have demonstrated that hoarding runs in families and a recent twin study
has found that this familial link is due to both genetic and to shared environmental factors
(Iervolino et al. 2009).
While the prevalence of hoarding in children and adolescents is currently unknown (Mataix-
Cols et al 2014) there is evidence that hoarding behaviours may start several decades
before individuals present to the clinics, with retrospective studies suggesting that hoarding
symptoms first emerge in childhood or early adolescence at an average age of 12 – 13
years (Ayers et al 2010, Fontenelle et al 2004) and start interfering with everyday
functioning by mid-thirties. Therefore it is reasonable to conclude that hoarding behaviours
may be present early in life and span well into the late stages of life, and any strategies
should be largely suitable across the lifespan.
1.2.3 Current Legislation to support people with a Hoarding Condition
In the absence of medical recognition of hoarding as a specific disorder in the UK currently,
statutory organisations look mainly to statutory powers made within environmental health
legislation. This legislation address the issue of the problems created by hoarding, and
does not recognise or address the needs of the person hoarding. Statutes such as the
Public Health Act 1936, the Environmental Protection Act 1990 and the Housing Act 2004
all contain powers that a local authority can use to address the consequences of hoarding,
but these powers are now constrained by the requirements of the Human Rights Act 1998
and the Equality Act 2010. OCD Action claims that the most commonly used ‘power’ is
under section 83 of the ‘Public Health Act 1936’ which deals with premises that are deemed
‘filthy or unwholesome condition as to be prejudicial to health or are verminous’. The report
by OCD Action explains that ‘filthy’ in this context is a euphemism for excrement, animal or
human specifically and is a carry-over from Victorian legislation, but vulnerable to
misinterpretation in current practice.
We would hope that as hoarding disorder becomes recognised as a specific disorder, the
scope and impact of environmental health legislation will be reduced, and that changes will
be made in legislation to ensure a person-centred response to the needs of those with
hoarding disorder.
Total Adult Population of Hac ney
aged and over
Population of Hac ney aged — 9
Population of Hac ney aged and
over
Total Population 6,3
Table 1: Total Adult Population of Hackney in 2011 and Population of Hackney aged 20 – 29 and
55 and over (i.e. total adult population by year (nominal and proportional %)
Source: Hackney Council 2013a & ONS 2013
1.3 Current population trends in Hackney
Hackney is an inner city Borough of East London. All 3 of the borough’s wards are in the
top 10 per cent of the most deprived wards nationally (Hackney Council, 2013a). Data from
the 2011 Census estimates that 75% of Hac ney’s population are adults - aged 20 years or
older (Hackney Council, 2013b – Illustrated in Table 1). Almost half of this adult population
fall into two age cohorts, 20 – 29 and 55 and over. This is significant as research suggests
hoarding tendencies manifest in young adults while people with a hoarding disorder do not
present until they are older adults..
According to population projections for Hackney by the Greater London Authority (GLA)
growth is expected in the 65+ age group over the next 30 years (Hackney Council, 2013a).
This age group is expected to grow by 11,900 people, an increase on the current population
of 36% (ibid). Hackney Council attribute this projected growth to “falling mortality rates,
increasing life expectancy and the ‘baby boom’ population reaching retirement age”
(Hackney Council, 2013b, p. 5).
Data from the 2004 Indices of Multiple Deprivation evidenced high levels of income
deprivation among older people in Hackney (Hackney Supporting People Team 2004, p.
22). Hackney was still the second most deprived local authority in England, London and
inner London in 2011 (Hackney Council, 2013a). The average life expectancy for a person
born in Hackney is 83 years for women and 77.4 years for men (Hackney Council, 2013a).
While these figures demonstrate an increase in 2001 expectancies of 3.3 years for women
and 4.2 years for men (Hackney Supporting People Team 2004) the life expectancy for
men is still lower than the London average (by 0.9 years) and the national average (by 0.8
years) (www.data.london.gov.uk).
In 2011, 14.5% of Hackney adults said they were disabled or had a long-term limiting illness
and one tenth of all adults experience depression.
1.3.1 The London Borough of Hackney – an overview of housing tenure
The most recent figures from the 2011 Census show a steady decline in the proportion of
Hackney residents renting from a local authority (LA) registered social landlord (RSL) or
housing association, falling from over 50% in 2003 to 44% (Hackney Council, 2013a). Data
released in the next issue by the Office for National Statistics (ONS) may provide enough
information to assess if the overall decline in Hackney residents renting from LA and RSL
landlords is reflected in a proportional decline in older people in such tenures. However,
figures from the 2011 Census also show a slight decrease in owner occupiers (26%) when
compared with 2008 (29%) and a large proportional growth in the private rented sector of
67% to over 20% of the overall population (ibid).
It remains to be seen if a decrease in LA and RSL accommodation translates into an
increase in owner occupiers within the borough or an increase in private rented
accommodation as different tenure types would have different implications for accessing
programmes of support and associated funding to support individuals with hoarding
disorder.
2. RESEARCH METHODOLOGY
We applied a combinations of research methods were used in gathering and analysing the
information collected to complete our proposed study. The first part of the research process
was a desk-based analysis of empirical data already gathered via the referral process to
Making Room through MRS Independent Living. From this descriptive statistic methods
were applied to generate a profile of known people with a hoarding condition in the borough
using markers including gender, age, ethnicity, disability, housing tenure, mental health
diagnosis.
The second stage of this research was qualitative, using one-to-one interviews to explore
the potential additional impact of a hoarding condition on the daily living and wellbeing of
individuals. These findings were then be assessed to identify themes and trends across all
participants.
2.1 Stage 1: Quantitative Methods
Using Frost’s Assessment tool Appendix 1 and Clutter Image Rating tool Appendix
MRS Independent Living had identified 90 clients as adults with hoarding behaviours. A
dataset of this population was extracted from the organisation’s database and analysed
using a statistical analysis software package (SPSS).
2.2 Stage 2: Qualitative Methods
During the initial design phase of this research proposal, hosting of a focus group was
proposed as the most appropriate qualitative method for this research. A letter of invitation
(appendix 3) was sent to a random selection of 30 of the 90 clients on the MRS
Independent Living database and an information sheet prepared (appendix 4).
However, despite follow-up telephone calls to all invitees, only 6 confirmed attendance.
Therefore, the method was changed to one-to-one interviews to ensure each person had an
opportunity to share and contribute equally.
The interviews were held on the 12th of August in our meeting room in Dalston. Of the 6
interviewees, 4 attended and completed interviews. All interviewees asked for anonymity to
be protected and any or all obvious information / detail to be omitted. It was agreed that full
transcripts would not be made available within this report, but anonymised quotations would
be included.
3. RESULTS
3.1 MRS Independent Living Dataset
The MRS Independent Living dataset identified a total of 92 adults with hoarding
behaviours on its database, with 90 of these individuals living in the London borough of
Hackney.
The information collected by MRS Independent Living was for monitoring purposes, and all
referrals were for a specific service provided by MRS Independent Living, not in relation to
the individual’s hoarding behaviours. Therefore, this is not a complete dataset relative to
this piece of research, and it is important to acknowledge that there are gaps in some of the
data. However the data against the markers of gender, age, ethnicity, disability, housing
tenure and source of referral is robust enough to analyse and generate a potential profile of
adults with hoarding behaviours in the London borough of Hackney.
3.1.1 Analysis of sample with hoarding behaviours in Hackney by age, gender,
housing tenure and ethnicity
There are almost as many men as women with identified hoarding behaviours living in
Hackney and known to MRS Independent Living (Diagram 1). Where age is known (in 85%
of the population) almost half (46%) are aged between 55 and 74, and almost a quarter
(24%) are under 55 (Table 2). Initially this research was going to focus on identified clients
with hoarding behaviours aged 55 and over. As this would have excluded almost one
quarter of this known population of adults with hoarding behaviours it was considered
relevant to include this data.
Age of Adults No of Adults % of total (n=77)
35 - 44 4 5
45 - 54 15 19
55 - 64 19 25
65 - 74 14 21
75 - 84 17 22
85 and over 8 10
Unknown 13 -
Female
Male
58% 42%
Diagram 1: Gender Profile of Adults with Hoarding Behaviours
on MRS Independent Living database living in Hackney
Table 2: Population of Adults with Hoarding Behaviours by
age (nominal and proportional %, median highlighted in grey)
n = 90
Almost three quarters of the total population (74%) of adults with hoarding behaviours on
the MRS Independent Living database live in social housing (local authority (LA), registered
social landlord (RSL) or housing association accommodation), which is significantly higher
than the overall proportion of adults in Hackney living in this type of accommodation, which
is currently 44% (Hackney Council, 2013). Owner occupiers with hoarding behaviours are
less than one fifth (17%) of this dataset, which is less than the overall proportion of this
current population from the 2011 Census (26%).
While the data collected was not robust enough to statistically test the hypothesis that
adults with hoarding behaviours living in social housing are more likely to be referred for
support to manage their condition by their housing officer, such a hypothesis could be
proposed anecdotally, as the proportion of identified adults with hoarding behaviours living
in social housing is almost 75% and one can reasonably assume that all tenants in this
housing tenure have access to and interaction with an allocated housing officer.
The potential likelihood of an increase in referrals from individuals with hoarding behaviours
living in private rented housing could also increase as there has been an increase of 67% to
Diagram 2: Housing Tenure of Adults with Hoarding Behaviours on
MRS Independent Living database living in Hackney (%)
n = 90
Council Tenant (38%)
Housing Association (36%)
Owner Occupier (17%)
Private Tenant (2%)
38%
36%
17%
7% Unknown (7%)
2%
Table 3: Population of Adults with Hoarding Behaviours by Ethnicity / Nationality by
population (number and proportion (%) (n = 90)
over 20% of the overall population in this tenure type in the borough. This population is
particularly vulnerable as the responsibilities and legal obligations of a private landlord (and
the resources available to both tenant and landlord) are significantly different and
predominately support the wishes of the landlord (Shelter).
The proportion of people identified as White British adults at almost 30% of this sample, is
in line with to the proportion of White British adults in the borough (36%).
Nationality / Ethnicity No. of Sample Population
Proportion of Sample Population (%)
Total Proportion of Sample Population (%)
White
White British 25 28
37 White Irish 1 1
White Other 7 8
Black
Black British 2 2
17 Black Caribbean 11 12
Black African 3 3
Black Other - -
Asian
Indian 2 2
4 Pakistani - -
Bangladeshi - -
Asian Other 2 2
Missing / Unknown 36 40 40
However, it is difficult to draw any significant conclusions or relationships between adults in
Hackney with hoarding behaviours and ethnicity as information on 40 per cent of the
sample group is missing.
3.1.2 Analysis of wellbeing of the sample with hoarding behaviours in Hackney by
disability and mental health.
In 2011, 14.5% of Hackney’s adult population said they were disabled or had a long-term
limiting illness (Hackney Council 2013). In the sample of adults with hoarding behaviours
from the MRS Independent Living database 70 of the 90 Hackney residents said they were
disabled, 76 per cent of the total sample. Of the adults who said they were disabled, 33 per
cent (30 adults) said that they had a mental health illness (Diagram 3).
Additional data would have to be collected to test the relationship between this sample’s
level and types of disability and their hoarding behaviours. However, the high proportion of
participants with a mental health condition in this sample supports Frost’s findings that
hoarding behaviours are most commonly found with mental health conditions [depression
and anxiety] and suggests that the increase in adults in Hackney with multi-diagnoses of
anxiety or depression with a hoarding disorder is likely.
Missing / Unknown (18%)
33%
Yes I have a disability
(76%)
No I do not have a
disability (6%)
Yes my disability is a
mental health illness (33%)
Diagram 3: Proportion of adults with hoarding behaviours who have a
disability (%) n = 90
3.2 Themes from one-to-one Interviews
3.2.1 Introduction
Interviews took place with four clients of MRS Independent Living, all of whom have
received support via the Making Room model of support to manage their hoarding
behaviours. All four interviewees were female, and three of the four were over 55. All asked
for anonymity as a condition for participating, so supporting quotations were not be
attributed to the specific person, and all possible identifiable information has been removed
from quoted responses.
All four participants were referred to MRS Independent Living by a third party – none of
them self-referred. All four participants identified themselves as hoarders, and were
comfortable and familiar with the term and its implications.
3.2.1. Theme 1: Loss / Trauma
Two of the four participants vividly described loss of childhood innocence as a pivotal
influence on their hoarding behaviours. For one participant it was the loss of her father
(through a sudden death) and move from abroad to London at the age of four that started a
pattern of collecting “treasures” which escalated as she grew older.
“I hung onto everything I’ve got to have my possessions and have control over things and
feel like…I’m worthy of having these things”
For the other participant, a childhood with an abusive father who used to “terrify” her from a
young age was the starting point for her hoarding behaviour.
One of the four participants had very clear insight between her hoarding behaviour and her
mental health diagnosis of bi-polar disorder. This participant described herself as “both an
organised and disorganised hoarder” buying goods of value during manic episodes
[organised hoarding] and buying anything she felt connected with in charity shops etc. when
she would go out on a daily basis [disorganised hoarding] –
“I was in second-hand shops all the time…now I’ve banned myself from second-hand
shops, no car boot sales…because I know if I go in there I won’t be able to stop myself from
buying things”
The final participant did not display any insight into her hording behaviours, despite have
received support from Making Room – she told the interviewer that things just started
“building up” around 20 years ago. This participant emigrated from the UK with her family
over 30 years ago and returned alone 20 years ago. This participant thought she might be
depressed as she regularly “feels low” but did not want to seek medical support –
“you just have to get over it haven’t you? I don’t go to the doctors as they might think…and
there isn’t anyone else to go to”
3.2.2. Theme 2: Physical and Mental Wellbeing
Only one of the four participants complained of poor physical health, and when asked the
cause of this poor health, she disclosed that she is a heavy smoker.
However all four participants spoke directly or indirectly about feelings of depression, and
three of the four were currently receiving support from health services to manage their
mental wellbeing.
Two of the four participants were receiving counselling support through their GP to manage
their anxiety and depression. One of these participants had not told her counsellor that she
was a hoarder because “she never asked me…” This participant explained that she starts
to hoard when she feels isolated as this makes her feel anxious. When asked what
techniques she used to manage this she responded –
“I give myself a good metaphorical kick and tell myself to get on with it, as if I’m someone
else…it’s still very difficult and if I’m isolated it’s very hard…if more people visit it’s easier”
The other participant receiving support to manage her mental health via her GP had been
seeing a psychologist for two years before [not sure how long ago], but the psychologist left
just as they were about to have a brea through and wasn’t replaced. She was very
frustrated at the limited support available to her through mental health services and the
potential negative impact to her ability to manage her hoarding behaviours -
“hoarding is not a quick thing to cure, it needs…the people who are hoarders need
continuous support…maintenance is so important otherwise you go back to what you’ve
been used to”.
As mentioned in the previous section, another participant received regular support through
the mental health team to manage her diagnosis of bi-polar, and the fourth participant did
not believe that she has a mental health condition, but spoke about feelings of loneliness
and isolation when she was abroad with her family and on her return to the UK alone –
“just because people are around you doesn’t mean you aren’t alone…I used to cry every
day over there but my family never knew…knowing that someone is there – you might
never call them but just knowing they are there if you need them…I never had that”
3.2.3. Theme 3: Negative Experiences accessing Support Services
All four participants were referred to MRS Independent Living and Making Room through
front line services – three through mental health services that they were already engaging
with, and one through her housing officer. Of the four participants, the service user referred
through her housing officer was noticeably unable to vocalise her feelings regarding her
hoarding behaviour compared with the other participants, and was also the only participant
unable to propose a reason for her hoarding behaviour. It may support our expectation that
people receiving other forms of support for their condition will be more likely to be able to
engage with Making Room. It may also reflect that housing staff will currently be focussing
on reducing the hoarded material rather than on supporting the client to learn how to
manage their hoarding behaviour.
All four participants expressed frustration at the lack of services that were specifically
available to support people with hoarding behaviours. Two of the three social housing
tenants had previously been threatened with eviction by their housing officers due to the
clutter caused by their hoarding –
“I remember them singing ‘you’ll be evicted, you’ll be evicted’ in a horrible way but this was
when hoarding was in its infancy….now I know more I only welcome people who are not
abusive into my home”
“I used to have stuff in the hallway…I received a letter from the Housing Association 12
years after moving in…telling me they’d evict me if the clutter wasn’t cleared…there was no
conversation or no-one approached me previously to talk about it…I have a big emotional
attachment to my stuff so when you have got to get rid of it and you have no choice…”
However the third participant who was also a social housing tenant spoke warmly and
highly of her housing officer and associated support –
“I wouldn’t know where to ask for help…if it wasn’t for [name of housing officer] I wouldn’t
have done anything”
The fourth participant is a home-owner and had a particularly negative experience when
she went to her GP for help as a mother with young children –
“he told me ‘don’t ask for help because they’re not help available...what do you need help
with? You’re fine, you’re just eccentric’…but I knew it was more than that but what could I
do? There was nowhere for me to go…”
All four participants agreed that there should be a specific service for people with hoarding
disorder to access, but all four had differing opinions on what or where this should be within
the health and care services within the borough based on their personal experiences. Two
participants spo e of the ‘fear’ associated with Social Services being involved –
“they come in and take everything…blitz your home and take your children away”
None of the four participants had received a blitz clean from the council or housing
association. Three participants had children that no longer lived with them – for two
participants this was because they had successfully raised their children and they had left
home as young adults, and the child of the third participant lived with her father [for reasons
not related to her hoarding behaviour] but visited her mother regularly.
3.2.2. Theme 4: Self-management of hoarding behaviours
Three of the four participants have developed techniques to manage their hoarding
behaviours. As mentioned previously, one participant does not go to charity shops and car
boot sales so she will not buy things, and also manages her mental health condition to
minimise manic episodes where she buys goods of high value.
Two of the other participants attend hoarding specific peer support groups in London. Both
attend a peer-led support group in Whitechapel, and one also attends the East Ham
Hoarding Support group which is co-ordinated by a mental health professional. Both
regularly attend the monthly meetings.
“Hoarding group is useful as we all share something”
Both expressed a desire to have similar peer support in Hackney, but both acknowledged
that they were too disorganised to take responsibility for organising or establishing this.
Only one of the participants did not want to attend a peer support group –
“I wouldn’t like that no…to get up in a room full of people and talk…oh no…that’s not for
me”
Again one cannot draw definite conclusions from such a small sample, but it is worth noting
that the participant who did not want to attend the peer support groups is the same
participant who does believe that she has a mental health condition, was referred by her
Housing Association and is not receiving any emotional support or therapy from Mental
Health Services.
One of the participants also attends a group for Irish people which specifically promotes
good mental health, and also goes to Sutton House for pleasure.
4. FINDINGS
4.1 There is a population of Hackney residents with recognised hoarding
behaviours.
Analysis of the data collected by MRS Independent Living demonstrates that there is a
population of Hackney residents with a hoarding condition. While there are gaps in the data,
the data we do have supports the following observations:
Within the sample collected by MRS Independent Living, there is no significant difference in
prevalence of hoarding behaviours by gender, female service users are a little more than
half of the total sample. The largest occurrence of identified hoarding behaviours is in those
aged 55 – 74 years of age (46% of the sample when adjusted for missing / unknown data).
However a significant proportion of the Hackney data were younger adults (35 – 54). This is
at odds with published research which suggests that the average age for accessing support
is 55 and over (Grisham et al 2005). One possible explanation for this outlier could be the
high proportion of this sample within social housing where access to, and interaction with, a
housing officer is a requirement of the tenancy. Should further data support this hypothesis,
it would reinforce the importance of providing hoarding disorder awareness training for
front-line staff working with adults.
Hoarding disorder is likely to become seen as a mental health disorder but effective support
will vary according to their housing tenure. Future development of appropriate mental health
support services and treatment options with clear pathways and strategies relevant to each
housing tenure type will have to be developed within the borough to ensure the needs of all
residents within the borough are provided for.
This will be particularly important for future planning, as the likelihood of incidences of
hoarding increasing is high. Current predictions for changes in the proportion of the
population living in each tenure type in the borough suggest a continued decrease in the
numbers in social housing and increases in owner occupiers and people living in the private
rented sector. Any local strategy will need to take these projected changes into account: in
particular the local authority has relatively limited powers to intervene with owner occupiers
and leaseholders. A more client-facing and empathetic approach may well be more
sustainable and cost-effective.
The current data collected by MRS Independent Living has limited the scope of the findings
in this research because it was collected for the purposes of delivery of other services. This
has limited more detailed analysis of co-dependency and relationships between specific
markers within the dataset. However, as this dataset develops under Making Room, this
analysis will be possible with time.
4.2 Similarity and relevance of themes identified from interviews.
Interviews with participants identified similar themes within the sample group, which are
also supported by published research and literature.
Three of the four interviewees had developed considerable insight into their hoarding
behaviours but long after the behaviours began. They were now able to identify when and
why their saving and collecting behaviour had started. These profiles fit the patterns of
behaviour identified by Grisham et al (2005) regarding the late development of the
individual’s awareness of their condition relative to the established pattern of hoarding
behaviours.
All interviewees expressed an emotional connection to the items they collect, (albeit at
varying levels of intensity) and expressed feelings of grief, sadness and fear if possessions
were not discarded positively (e.g. gifted, re-used, recycled, donated to charity etc). Frost &
Steketee (1999) and Kyrios et al (2002) have published similar findings in separate studies,
concluding that objects can hold particular memories for the person, or that having lots of
familiar objects around the person provides them with a feeling of safety and comfort.
Despite individual expressions of frustration by three of the four participants regarding the
lack of understanding experienced when engaging with support services no common theme
identifying a single appropriate support service emerged from this set of interviews. This is
not surprising, as recommendations from controlled studies advise that a flexible and
individually tailored program of support combining practical and psychological treatment is
most likely to succeed Grisham et al (2005).
These themes mirror findings in published research, but again when one considers the
scope and scale of this sample (4 from 90 participants) it would be prudent to continue to
build on this in further interviews with service users to test the commonality of the themes
across a broader sample.
4.3 Conclusions
The DSM-5 proposes that 2 - 6% of an adult population hoards, and while early material
deprivation is not a proven cause for a hoarding disorder to manifest, high levels of trauma
or stressful life events have been found in studies of people who hoard (Cromer et al, 2007)
as have diagnoses of anxiety and depression (Frost in press). Therefore Hackney is as
likely as any other borough in London to expect to have a population of adults with hoarding
behaviours. Hac ney’s current adult population is 18 ,7 , thus it is reasonable to predict
that approximately 3,700 – 11,100 adult residents of Hackney may have a hoarding
condition.
The dataset used in this research was from MRS Independent Living, where a total of 90
Hackney residents have been assessed and identified as having a hoarding condition.
Applying this population proportionally to the potential number of adults with hoarding
behaviours in Hackney, this dataset is an estimated 0.8 - 2.5 % of the potential population
of residents with a hoarding condition that may reside in the borough. Therefore one can
conclude that there are many residents who may come forward or be referred in the future
for support to manage there hoarding behaviours. The rate of this increase may be
significantly accelerated as awareness of hoarding disorder as a mental health disorder is
recognised in the UK, as will the need and demand for responsive and accessible support
services. In addition to developing a multi-faceted and accessible range of services to
support all existing residents with established hoarding behaviours, appropriate pathways of
support for younger residents who may be developing hoarding behaviours as a response
to poor mental health (particularly anxiety and depression) is also essential. This could be
supported by developing a borough strategy including counselling or cognitive behavioural
therapy (CBT) for young adults to access.
Detailed interviews indicate that there are common factors that prevent this population from
accessing support including lack of appropriate services and/or support they might turn to,
and a lack of empathy or support from front line staff (described by the interviewees as
GPs, social services, housing officers and family members). For those interviewed this
appears to have an additional adverse effect on their general mental wellbeing, and to
increase their feelings of isolation.
5. RECOMMENDATIONS
As this are no prior studies completed on this particular population of Hackney residents,
this research recommends a multi-strategy response to ensure the needs of people with
hoarding disorder are acknowledged and responded to with appropriate provision, and that
the borough has a robust and flexible strategy to support and respond to individual needs
within a structured and considered framework.
5.1 Recommendations for the individual who recognises their hoarding condition
To establish clear pathways for them to access support. This would include identifying
first points of contact, and developing a model with adequate flexibility within support
options to meet personal needs.
To develop access to services that can provide information and straightforward access
to financial advice within in a supportive context to help people purchase appropriate
services to manage their condition including options such as direct payments, grants
and brokerage support.
5.2 Recommendations for health and social services in the borough of Hackney
To identify and appoint a lead individual, agency or partnership to identify and
manage multi-agency support for individual support needs.
To develop and launch an awareness campaign within support services (health and
social care) and across the borough as soon as possible.
To develop of a training programme to provide front-line staff with the skill-set to
respond appropriately and sensitively to the needs of the individual.
Develop an awareness campaign for residents of Hackney, as part of an overall
strategy to establish clear pathways and ensure appropriate health and support
services are available to meet the needs of existing and newly identified residents
with hoarding behaviours.
Design, produce and commit to a hoarding protocol* for the borough. In line with
Hackney policies it should be user facing, give a lead role to the client group, and
respects the autonomy, dignity and choice of people with a hoarding condition.
*Only Lewisham and Merton currently have a protocol in place (Source: on-line search)
References
American Psychiatric Association (2013). Diagnostic and statistical manual of mental
disorders (5th ed.) Washington, DC: American Psychiatric Association.
Ayers, C.R., Saxena, S., Golshan, S., & Wetherell, J.L. (2010) Age at onset and clinical
features of late life compulsive hoarding. International Journal of Geriatric Psychiatry,
5(2), 142 – 149.
Cromer K.R., Schmidt, N.B., & Murphy, D.L. (2007). Do traumatic events influence the
clinical expression of compulsive hoarding? Behaviour Research and Therapy, 45,
2581 – 2592.
Fontenelle, L.F., Mendlowicz, M.V., Soares, I.D., & Versiani, M. (2004). Patients with
obsessive-compulsive disorder and hoarding symptoms: A distinctive clinical
subtype? Comprehensive Psychiatry, 45, 375 – 383.
Frost, R.O., steketee, G., & Tolin, D.F. (in press). Comorbidity in hoarding disorder.
Depression and Anxiety, [Epub ahead of print].
Frost R.O., Steketee, G., & Williams, L. (2000). Hoarding: A community health problem.
Health Society Care Community, 8, 229 – 234.
Frost, R.O., & Gross, R.C. (1993). The hoarding of possessions. Behaviour Research and
Therapy, 31, 367 – 381.
Frost R.O., & Hartl, T.L. (1996). A cognitive-behavioural model of compulsive hoarding.
Behaviour Research and Therapy, 34, 341 – 350.
Frost R.O. & Steketee G. (1999). Issues in the treatment of compulsive hoarding. Cognitive
and Behavioural Practice, 6, 397 – 407.
Grisham, J.R., & Barlow, D.H. (2005). Compulsive hoarding: Current research and theory.
Journal of Psychopathology and Behavioral Assessment, 27, 45 – 52.
Grisham J.R., Frost R.O., Steketee G., Kim H.J. & Hood S. (2006). Age of onset of
compulsive hoarding. Journal of Anxiety Disorders 20:5, 675 – 686.
Hackney Council 2013a, ‘Hackney Profile’, London Borough of Hackney, Policy and
Partnerships Team (online), available at:
www.hackney.gov.uk/Assets/Documents/Hackney-Profile.pdf
Hackney Council 2013b, ‘Census 2011 Analysis: Population, Households and Growth’,
(online), available at:
www.hackney.gov.uk/Assets/Documents/Census_Population_Households_Growth.p
df
Hackney Supporting People Team 2004, ‘Supporting People 5 Year Strategy 2005—2010,
London Borough of Hackney.
Hanson,Iervolino, A.C., Perroud, N., Fullana, M.A., Guipponi, M., Cherkas, L., Collier, D.A.
et al (2009). Prevalence and heritability of compulsive hoarding: A twin study.
American Journal of Psychiatry, 166, 1156 – 1161.
Kyrios M., Steketee G., Frost R.O., & Oh S. (2002). Cognitions in compulsive hoarding.
R.O. Frost & G. Steketee (Eds.) Cognitive approaches to obsessions and compulsions –
theory, assessment and treatment (pp. 270 – 289). Amsterdam, Netherlands:
Pergamon / Elsevier Science Ltd.
Landau, D., Iervolino, A.C., Pertusa, A., Santo, S., Singh, S., & Mataix-Cols, D. (2010).
Stressful life events and material deprivation in hoarding disorder. Journal of Anxiety
Disorders, 25, 192 – 202.
Mataix-Cols, D., Pertusa, A (2012) Annual Research Review: Hoarding disorder – potential
benefits and pitfalls of a new mental disorder, Journal of Child Psychology and
Psychiatry 53:5, 608 – 618.
OCD Action, OCD & Housing – what you need to know, downloaded from
www.ocdaction.org.uk
Pertusa A, Frost RO, Fullana MA, et al. (2010), Refining the disgnostic boundaries of
compulsive hoarding: a critical review, Clinical Psycohology Review (4), 371 – 386.
Appendices
1. Hoarding Assessment Tool
2. Clutter Image Rating Scale Tool
3. Letter of Information
4. Information Sheet
HOARDING ASSESSMENT TOOL By Randy Frost, PhD
Telephone screening:
Date referral received:______________________
Worker receiving call:______________________ Department_________________________
Client Name:_____________________________ Age:__________________
Address:_________________________________________________________________________
Type of dwelling:__________________________ Phone:_______________________
Referral source (may be omitted to preserve confidentiality):_________________________________
Phone:__________________________
Other household members___________________________________________________________
Pets/animals______________________________ Own/Rent________________
Family or other supports (include names and phone numbers)_______________________________
________________________________________________________________________________
Other programmes or private agencies involved:__________________________________________
________________________________________________________________________________
Physical or mental health problems of client:_____________________________________________
Are basic needs being me (i.e food/shelter)______________________________________________
Client’s attitude towards hoarding______________ Will client allow access:____________________
Description of hoarding problem: (presence of human or animal waste, rodents or insects, rotting food, are utilities operational, are there problems with blocked exits, are there combustibles etc)
________________________________________________________________________________
________________________________________________________________________________
________________________________________________________________________________
Other problems/needs______________________________________________________________
Initial hoarding severity rating: None _______ Mild_______Moderate_______Severe_______
Others to involve in initial assessment__________________________________________________
_________________________________________________________________________________________________
Modified after Arlington County, VA: Hoarding Task Force’s Assessment Tool
Condition of the dwelling (to be completed at the dwelling):
Date:______________________
Response team members and phone numbers:___________________________________________
Please indicate whether the following appliances/utilities are in working order:
Yes / No / unknown Yes / No / unknown
Toilet Shower / bath
Kitchen sink Bathroom sink
Stove / oven Fridge / freezer
Washing / dryer Heating
Other:
Please indicate the extent of each of the following problematic living conditions:
None Somewhat Severe comments
Structural damage to house
Rotten food in house
Insect or rodent infestation in house
Large number of animals in house
Animal waste in house
Clutter outside the house
Cleanliness of house
Other (e.g. human faeces)
Please indicate the extent to which clutter interferes with the ability of the client to do each of the following activities:
Activities of daily living n/a Can do Can do with difficulty
Unable to do
Comments
Prepare food (cut up, cook)
Use refrigerator
Use stove
Use kitchen sink
Eat at table
Move around inside the house
Exit home quickly
Use toilet (access)
Use bath/shower
Use bathroom sink
Answer door quickly
Sit in your sofas and chairs
Sleep in your bed
Clean the house
Do laundry
Find important things (e.g. bills)
Care for animals
Client assessment (to be completed during an interview with the client)
Mental health issues (e.g. dementia)___________________________________________________
Frail/elderly or disabled_____________________________________________________________
Family and other social support_______________________________________________________
Financial status/ability or willingness to pay for services___________________________________
Hoarding interview (questions to ask the client): [indicate the closest answer]
1 Because of the clutter or number of possessions, how difficult is it for you to use the rooms in your house?
Not at all mildly moderately extremely difficult difficult difficult difficult
2 To what extent do you have difficulty discarding (or recycling, selling, giving away) ordinary things that other people would get rid of?
No mild moderate extreme difficulty difficulty difficulty difficulty
3 To what extent do you currently have a tendency to collect free things or buy more things than you need or can use or can afford?
Not at all mildly moderately extremely
4 To what extent do you experience emotional distress because ofr clutter, difficulty discarding or problems with buying or acquiring too many things?
No distress mild moderate severe distress distress distress
5 To what extent does the clutter, problems discarding, or problems with buying or acquiring things interfere with your life (daily routine, job/school, social activities, financial difficulties)?
Not at all mildly moderately severely
Summary:
Level of risk: none mild moderate/severe (based on assessment of condition of the dwelling)
Level of insight: none mild moderate fully aware & co-operative (based on comparing client’s responses with observed circumstances)
Complicating factors (e.g. dementia/discbility)____________________________________________
Recommendations_________________________________________________________________
________________________________________________________________________________
Unit C1, 3 Bradbury Street, London N16 8JN
Dear
My name is Breda Spillane. I am a researcher for Making Room—part of MRS Independent Living. I would like to invite you to take part in a focus-group discussion at our office on Tuesday 19th of August. You have been invited to participate because: - You live in Hackney. - You have had help from Gill Jackson to declutter your home. Healthwatch Hackney and City and Hackney CCG (who now run Hackney NHS) have asked us to find out about the views and experience of people whose homes are heavily cluttered. The question we will be asking you to talk with us about at our focus group is:
What is your experience of living in a heavily cluttered home? We hope that the feedback from this discussion - all anonymous of course - will help improve the services available to help the many other people with similar problems. The focus-group event will be held at our office:
Unit C5, 3 Bradbury Street, Dalston N16 8JN. It will begin at 11am, and will be finished by 3pm at the latest. Refreshments and a light lunch will be provided. We will telephone you on Thursday 14th to ask if you will attend and arrange any transport you may need, or you can call the office on 020 7272 3102 and let us know.
We look forward to seeing you there,
_______________________________________
Breda Spillane
Making Room is part of MRS Independent Living. MRS Independent Living is a registered charity no 801419.
in association with
INFORMATION SHEET FOR PARTICIPANTS
My name is Breda Spillane, and I am a researcher for Making Room—part of MRS Independent Living. We have
been given funding by Healthwatch Hackney and City and Hackney CCG to research possible barriers to accessing
good health and care services in Hackney. The title of this research is:
How does having a Chronic Disorganisation disorder effect my wellbeing?
I would like to invite you to participate in a focus-group discussion on the 19th of August 2014.
You have been invited to participate because:
- You live in the London Borough of Hackney.
- You have received support from Gill Jackson to manage your chronic disorganisation disorder (hoarding
condition).
You should only participate if you want to; choosing not to take part will not disadvantage you in any way. Before
you decide whether you want to take part, it is important for you to understand why the research is being done
and what your participation will involve. Please take time to read the following information carefully and discuss
it with others if you wish. Ask us if there is anything that is not clear or if you would like more information.
Aims of the Research
This is a small scale study which has 2 stages. You will be involved in the second stage—the focus group.
We would like you to come and talk to us about your experiences accessing services in Hackney, and if you think
having a chronic disorganisation disorder (hoarding condition) makes some aspects of life more difficult to
manage.
What happens next?
A member of our team will call you before the 19th to see if you would like to be part of our focus group.
The focus-group event will begin at 11am, and should be finished by 3pm (at the latest). Refreshments and a light
lunch will be provided. Photographs will be taken during the event, but we will ask you for your permission on
the day, and will make sure to respect your wishes regarding the use of any pictures taken.
If you decide to take part you are still free to withdraw at any time during the completion of the focus-group
without giving a reason, and have your data removed from the project until it is no longer practical to do so (e.g.
when I have written up the report).
If you do not want to take part, please just tell our staff member when they call and your name will be
removed from the selection list.
If you would like to contact me to discuss any aspect of this research project and your involvement further,
please email [email protected]. You can also request to speak with me by calling our
office on 0845 4500 410 or 020 7272 3102 .
Making Room is part of MRS Independent Living. MRS Independent Living is a registered charity no 801419.
in association with
