Challenges in Hackney –
Making Room Research
Making Room – who are we?
- Through delivery of the Mobile Repair Service (MRS Independent Living)’s core
service it became apparent that there is a definite need for a specific service to
provide support around hoarding within the borough.
- The MRS developed a pilot scheme led by Gill Jackson, which identified and
supported almost 40 people who have hoarding related issues.
- The MRS co-hosted an event with the Hackney Community and Mental Health
team in June 2011.
- The feedback was almost unanimous in recognising:
• The current lack of services specifically designed to support hoarders
• The need for an alternative approach that recognises that this is a multisectoral problem that organisations cannot resolve on their own.
From this Making Room was established, as a theraputic decluttering support
service for adults with hoarding behaviours.
Living with a hoarding condition in Hackney – ‘who am I
and how does this affect my daily life?’ (2014)
Making Room, on behalf of MRS Independent Living was commissioned by
Healthwatch Hackney and the CCG through the Innovation Fund to produce a
report on adults with hoarding disorder in Hackney.
We analysed data on 90 adults that has been assessed by MRS /Making Room,
and invited 25 of these participants to be interviewed, of which 4 participated.
Our report concluded that there is a population of adults with hoarding
behaviours living in Hackney, and the trends and themes identified in this
report echo finding of other published studies in the UK and America.
age (nominal and proportional %, median highlighted in grey)
housing tenure and ethnicity
Age of Adults No of Adults
% of total (n=77)
35 - 44
4
5
45 - 54
15
19
Hackney and known to MRS Independent Living (Diagram 1). Where age
55 - 64
19
25
of the population) almost half (46%) are aged between 55 and 74, and
65 - 74
14
21
75 - 84
17
22
(24%) are under 55 (Table 2). Initially this research was going to focus on
85 and over
8
10
with hoarding behaviours aged 55 and over. As this would have excl
Unknown
13
-
Population
of Adults
withofHoarding
quarter
of this known
population
adults with hoarding behaviours it
There are almost as many men as women with identified hoarding be
Living with a hoarding condition in Hackney – ‘who am I
and how does this affect my daily life?’ (2014)
Gender Profile of Adults with Hoarding
Behaviours on MRS Independent Living
Diagram 1: Gender Profile of Adults with Hoarding Behaviours
database
living
in Hackney.
on
MRS Independent
Living
database living in Hackney
age (nominal and proportional %, median highlighted in grey)
Female
Male
58%
Behaviours by age (nominal and
proportional %, median highlighted in
Table
2: Population of Adults with Hoarding Behaviours by
grey)
relevant to include this data.
42%
n = 90
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
-
Diagram 1: Gender Profile of Adults with Hoarding Behaviours
on MRS Independent Living database living in Hackney
Female
Male
58%
42%
the MRS Independent Living database live in social housing (local authority (LA), registered
social landlord (RSL) or housing association accommodation), which is significantly higher
Living with
a hoarding condition in Hackney – ‘who am I
than the overall proportion of adults in Hackney living in this type of accommodation, which
and how
does this affect my daily life?’ (2014)
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
Housing Tenure of Adults with Hoarding
current
populationon
from
the 2011
Census (26%).Living database
Behaviours
MRS
Independent
Diagram
Tenure of Adults with Hoarding Behaviours on
living 2:
inHousing
Hackney.
MRS Independent Living database living in Hackney (%)
Council Tenant (38%)
Housing Association (36%)
36%
Owner Occupier (17%)
Private Tenant (2%)
38%
Unknown (7%)
7%
17%
2%
n = 90
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
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
Living with a hoarding condition in Hackney – ‘who am I
disabled, 76 per cent of the total sample. Of the adults who said they were disabled, 33 per
and how
does this affect my daily life?’ (2014)
cent (30 adults) said that they had a mental health illness (Diagram 3).
Diagram 3: Proportion of adults with hoarding behaviours who have a
Proportion of Adults with Hoarding Behaviours who have a
n = 90
disability (%)
disability
Yes I have a disability
(76%)
No I do not have a
disability (6%)
Missing / Unknown (18%)
33%
Yes my disability is a
mental health illness (33%)
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
Living with a hoarding condition in Hackney – ‘who am I
and how does this affect my daily life?’ (2014)
Theme 1: Loss / trauma
• Loss of childhood innocence - the loss of a father (through a sudden death) and
move from abroad to London –
“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”
• A childhood with an abusive father who used to “terrify” the participant from a
young age.
Theme 2: Physical and 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…”
• Frustration at the limited support available through mental health services “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”.
Living with a hoarding condition in Hackney – ‘who am I
and how does this affect my daily life?’ (2014)
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.
• All four participants expressed frustration at the lack of services that were
specifically available to support people with hoarding behaviours.
• 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.
Theme 4: Self-management of hoarding behaviours
• Hoarding specific peer support groups in London
“Hoarding group is useful as we all share something”
• Keen to have similar peer support in Hackney, reluctant to have responsibility for
organising or establishing this.
Living with a hoarding condition in Hackney – ‘who am I
and how does this affect my daily life?’ (2014)
“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”
“he [the participant’s GP]
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…”
“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 noone 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…”
Service
User’s
experiences
Living with a hoarding condition in Hackney – ‘who am I
and how does this affect my daily life?’ (2014)
Report Recommendations
• To establish clear pathways for adults with hoarding behaviour to access
support
• To develop access to services that can provide information and
straightforward access to financial advice within a supportive context
• To identify and appoint a lead individual, agency or partnership identify and
manage multi-agency support
• To develop and launch an awareness campaign within support services and
across the borough
• To develop a hoarding specific training programme for front-line staff
• Develop an awareness campaign for residents of Hackney
• Design, produce and commit to a hoarding protocol for the borough
Current Situation- Facts & Stats
• The prevalence of hoarding disorder is between 2% and 5% of the population
(DSM 5)
• This means that there may be between 3,700 – 11,100 adult residents of
Hackney with a hoarding condition
• Making Room identified
11,100 (5%)
90 Hackney residents with
hoarding behaviours.
This suggests that 98 – 99%
3,700 (2%)
of the potential population
of hoarders in the borough
has not yet been identified.
90 (0.8 - 2.4%)
What are Making Room doing in
Hackney
Making Room has developed a
three part resource to resolve
the current gap in service
provision for adults with
hoarding behaviour.
3. Promotion of Hoarding Disorder –
via partnerships with borough
providers, C&H Psychological
Therapies Alliance, Pan London
Hoarding Taskforce
1. A one to one therapeutic
decluttering programme based
on the evidence based model
developed by Frost and Steketee
(2007)
2. A training programme for all
front-line staff to identify and
support adults with hoarding
behaviours.
The Clutter Image Rating (Frost)
http://pascalevictor.com/wp-content/uploads/2014/12/BedroomsHoarding.jpg
Making Room –
Case Studies
Case Study 1 - Profile
Client Profile
• Male, 58
• Lives alone
• Housing Association
tenant
Referral Pathway
• Referred by Floating Support
Officer
• Tenancy at risk due to
inaccessibility for safety checks
Initial Making Room Assessment: High Level Hoarding
• Client is a crisis level Hoarder. His home environment is
cluttered to the point of all rooms unfit for purpose.
• He is full of remorse and guilt but does not have the physical or
mental health to remove the clutter.
• He is climbing over possessions via the back door.
Case Study 1 – Proposed Support
Funding –
Hackney Council
& Housing
Association
Making Room, Hackney Social
Services and the Housing
Association developed a costing
proposal for panel where 20%
of the programme cost was paid
by Adult Social Services, and
the remainder by the HA.
Making
Room tester
sessions
Client Goals
agreed with
Making Room
support
Consent &
Commitment
from Client
• To regain use
of house,
improved
quality of life
• Have gas re
connected
• Fix leaking
taps & toilet
Case Study 1 – Taster Sessions (2)
2 Making Room staff and
client
2 x 2 hour sessions over 2
weeks
Conclusion: Client is
committed and ready for
Making Room programme.
Case Study 1 – Making Room Programme
Current Status - Ongoing
Hours worked together thus far: 124 over 31 weeks
• 2 members of staff for 2 hours per week. – recently changing to 1 member of
staff for 2 hours twice a week, as client is able to make decisions at a faster
pace and ready to work more intensively with 2 staff.
Progress:
• Initially not keen on donating or selling items- now feels some pleasure at
helping others. We set achievable boundaries with client with regards to
collecting rather than prohibiting- did want to increase his feelings of guilthe is now doing very little collecting saying he’s ‘gone off it a bit’
• Initially we would take the lead and and directly ask KS what he wanted to do
with the items- he is now making many of these decisions himself.
Transfer of confidence:
• Client is becoming more able to make healthy choices for himself he would
like to cook and have heating.
Case Study 1 – Environmental Impact
Emotional developments for client - Adjustments to new living spaces
Some difficulty adjusting to ‘empty’ room and an initial reluctance to make use of the
room.
Case Study 1 – Environmental Impact
Our client has now got a bed he can access
and sleep in – however, he is not using it yet,
but has rearranged the furniture in a more
homely way.
Next Steps?
Making Room will continue to work with the
client to declutter his home.
We will also continue to encourage our client
to access care and support agencies.
Case Study 2 - Profile
Client Profile
• Female, 79
• Lives alone
• Home Owner
Referral Pathway
• Self Referral
• Client had received a letter from Private
Sector Housing in response to complaints
by neighbours
Initial Making Room Assessment: High Level Hoarding
• Client is a crisis level Hoarder. Her home environment is
cluttered to the point of all rooms unfit for purpose and
inaccessible.
• Client is apologetic and believes ill health is reason for clutter
(she has had cancer twice)
• Significant childhood trauma regarding temporary loss of
mother.
Case Study 2 – Proposed Support
Funding – Self
Funding
Making Room offered to
refer client for support to
apply for a personal budget
/ charitable grant but client
declined as she does not
want to be means tested.
Making
Room tester
sessions
Client Goals
agreed with
Making Room
support
Consent &
Commitment
from Client
• To clear
garden and
stop
neighbours
complaining
• Clear house
before she
dies
Case Study 2 – Initial Programme
2 x Making Room staff and
client working in the patio
2 hour sessions over 5 weeks
Making Room also
corresponded with PSH
regarding letter & inspection
Case Study 2 – Making Room Programme
Current Status - Ongoing
Hours worked together thus far: 158 over 49 weeks
• Due to physical health needs of this client, sessions only increased to twice a
week due to external circumstances to meet building works deadlines.
Progress:
• Initially very reluctant to disregard anything that wasn’t obviously unusable.
• Programme progress was focused on the hallway, with the long term goal
being to declutter the hall, bedroom and bathroom to ensure suitable living
environment before decluttering the living room & kitchen (the largest and
most cluttered space).
• However, dry rot was found in the ceiling of the living room in April, so
intensive decluttering had to be completed then.
Joint Working:
• Private Sector Housing worked with Making Room and the client to direct
and advise targeted decluttering for building surveys to be completed.
Case Study 2 – Initial Programme
After the initial 5 week programme in the back garden, the client asked us to continue to
work with her in the hallway, as PSH would need access when they would come to
inspect the property in response to the complaint made.
Case Study 2 – Initial Programme
After the discovery of dry rot in the rear extension was discovered, the need for access
became even more critical, and the hallway had to be completely decluttered.
Our client managed this situation incredibly well, and was able to make difficult decisions
with our support. While she did some small scale decluttering in between sessions, the
goals between sessions were just to keep the decluttered spaces clear, which she did.
Case Study 2 – Intensive Programme
After the decision of dry rot was discovered, the
focus of the decluttering had to move to the back
room.
This was the room where our client slept, and kept
most of her personal possessions.
Case Study 2 – Environmental Impact
Room started 04/15
18/09/15
As our client was used to the Making Room
programme, and had developed good working
relations with her Making Room staff
increasing the tempo of decluttering )while
difficult) was possible.
PSH were very supportive and sensitive to our
client during inspections and work negotiation
discussions.
18/09/15
Case Study 2 – Next Steps
Environmental:
We will continue to declutter with the client focusing on the bedroom, to create a ‘bedsit’ environment for her to occupy. We are expecting to have to suspend decluttering
when building works begin, but will discuss with the contractor (at client’s request)
Emotional:
We have offered to support the client to therapeutic services and are very aware that
there may be a “PTS” effect after the accelerated decluttering of the living room. Our
staff will continue to discuss support options with her, and go with her to any she feels
would be helpful.
Financial:
PSH have been very helpful and send our client grant forms to assist with costs of
building works. If our client agrees, we will support her to complete these forms.
Social:
Our client is currently living with her sister as it is not safe for her to be in the living
room (where she was sleeping) and the bedroom is inaccessible. This is not the client’s
preferred choice, so we will work with her to get access to her bedroom.
Case Study 3 - Profile
Client Profile
• Male, 77
• Lives alone
• Private Rented Tenant
Referral Pathway
• Referred by One Hackney
community navigator
• Client has diagnosis of early onset
dementia – consent given by client
and family
Initial Making Room Assessment: High Level Hoarding
• Low to medium level hoarder, mainly arty material stacked
haphazardly.
• Trip hazards in art room, living room, and bedroom.
• Kitchen and bathroom need rearranging and tidying.
Case Study 3 – Proposed Support
Funding –
One
Hackney
Making Room sits on the One
Hackney framework, where a
bespoke intervention
programme can be provided for
suitable referrals. This
programme is 8 hours of one to
one decluttering support.
Consent &
Commitment
from Client &
next of Kin
Client Goals
agreed with
Making
Room
support
• To remove trip
hazards
• To support
client to sort his
possessions
Case Study 3 – Making Room Programme
Current Status - Closed
Hours worked together: o10 over 5 weeks
• 1 members of staff for 2 hours per week.
Progress:
• HRA began by identifying trip hazards with client and agreeing solutions
together to resolve these.
• Client led in discarding of unwanted possessions (refuse / recycling / charity)
and HRA sorted, tidied and placed items where client wanted them.
Outcomes:
• Property safer as trip hazards removed – possible for care and support
services to be put in place to ensure ongoing wellbeing of client.
• Client was not ‘hoarder’ in typical sense – his inability to manage his space
was due to decline in health. This made it easier for him to make decisions
on what to keep and what to let go of.
Case Study 3 – Environmental Impact
Client’s living room before and after intervention.
It is now possible for ongoing domestic support to be put in place to support the
client to maintain his home.
Case Study 3 – Environmental Impact
Client’s art room before and after intervention.
This room was rearranged to the client’s instruction and items we only discarded
by him. All art work that was to be kept was ordered and stacked safely, so client
can still enjoy his work.
Thank you for listening - any questions?