A Guide to Hoarding Best Practice

As this research demonstrates, hoarding is a complex issue resulting from an underlying mental health condition but with potentially widespread impacts. A multi-agency, multi-level response is therefore required to provide an effective response.

Although the provision of such services is not without cost, the risks and costs both to local services and the individuals concerned may be significantly higher. The development of multi- agency working and effective protocols together with the provision of dedicated resources should be seen as the essential elements in the development of an effective local response to the needs of people with a hoarding tendency.

I would like to express my appreciation to Dave Eldridge for his valuable and constructive suggestions during the planning and development of this research work. His willingness to give his time so generously has been very much appreciated.

I would also like to thank the staff who participated in the interviews and especially Olive Quinton, CEO of Lofty Heights CIC, whose contributions helped to inform the project.

Paul Smith. Director, Foundations

The word ‘hoarding’ was not used to describe human behaviour until the 1960s. Since then its definition has been changing significantly as the science on the subject has developed. According to Frost and Steketee a hoarder is a person who collects but fails to discard possessions that appear to have little or no value, whose living space becomes unfit for purpose and who experiences ‘distress or impairment’ in functioning as a result of the clutter.

For a long time, hoarding was not recognised as a disorder but as one of the diagnostic criteriaObsessive-Compulsive Personality Disorder. This only changed in 2013 when the Diagnostic and Statistical Manual of Mental Disorders (DSM) changed its definition resulting in the recognition of hoarding as a specific mental health condition. (DSM is the standard classification of mental disorders used by mental health professionals in the United States and elsewhere.) It’s thought that around 1 or 2 people in every 100 have a problem with hoarding that seriously affects their life.

Why Is Hoarding An Issue?

The latest research shows that hoarding is often but not always present with Obsessive Compulsive Disorder (OCD) and that almost everyone with a hoarding tendency (92%) has at least one additional mental health condition. This is important because hoarding is one of the more easily recognisable mental health conditions.

Identifying people with a hoarding tendency can help not only to deal with issues directly related to the hoarding but other existing conditions that would otherwise remain hidden. An effective tool that can help the diagnosis of hoarding is the Clutter Image Rating Scale, an objective scale which can be useful not only to the professionals but to the clients as well. This tool differentiates between 9 levels of clutter, and it is generally recognised that above level 4 professional help is recommended.

Hoarding is a condition that if left unchecked can escalate to a level that can have a significant impact both to the individual and the surrounding community.

From the person’s point of view, it can be detrimental to the health of the individual because of some of the conditions which are associated with hoarding: poor sanitation and cleanliness, poor nutrition from the inability to cook safely, inability to use rooms as intended, continuation or exacerbation of mental health conditions, isolation and loneliness, pests and vermin, potential fall hazards, smells, mould, and noxious fumes.

Hoarding can also present a risk to the property by increasing fire risk and by making repairs and maintenance impossible because of difficulties in safely accessing the property or particular rooms within it.

From the system’s point of view, hoarding can become antisocial and expensive to both the local community and the local authority. A hoarded property can increase the risk of crime due the property appearing to be unattended, and an accumulation of clutter, especially organic material, may create a nuisance and potential hazard for neighbours and may attract pests and vermin.

An accumulation of material may additionally pose a danger to people who might be entering the building, which could include relatives/friends and other people who might need to visit i.e. from the local council and emergency services.

In terms of costs, a poorly managed hoarding case can create extra costs for statutory services in terms of staff time, enforcement action (including court hearings), cleaning, repairs and costs of other associated issues such as homelessness or ill health.

A particular concern for the Health Service is delayed discharges of patients who have a hoarding tendency and whose homes may not be suitable for a patient to be discharged to. This can result in increased costs for health services and may block access to hospital beds for other patients.

In order to identify best practise the project used four sources of data. First, a survey was sent out to local councils that Foundations already had an established relationship with. In this survey, respondents were asked a series of questions on what services they provide for people with a hoarding tendency.

Respondents were then asked to rate these responses in accordance with their perceived effectiveness on a scale from 1 to 5. This survey also included some general questions about the number of hoarding cases which were dealt with each year and whether there were efficient referral services across local agencies.

The second element was a semi-structured interview that was conducted with some of the survey respondents to follow up on their answers and also with other leading experts working in the field of hoarding. These interviews were recorded and transcribed before the relevant information was extracted.

Finally, to provide additional data the project looked at publicly available housing assistance policies and at academic research.

The screening of housing assistance policies showed that relatively few councils have specific policies for hoarding. Examples of initiatives focused on people with a hoarding tendency include:

• West Sussex County Council has a ’deep clean and clearing service’ for residents with a disability in cases where the costs are not expected to be over £2500;
• Watford Borough Council has a similar policy but differentiates between different levels of hoarding. Interventions take place in cases where the hoarding is level three or level two (as measured by the Clutter Image Rating scale) when there are children involved as well. Having such criteria can be effective at directing the available resources to those who need it the most.
• South Gloucestershire Council’s policy notes that housing staff will work with colleagues from the Anti-Social Behaviour and Community Safety Team on cross-cutting cases where housing conditions and tenant and/or landlord behaviour negatively impact on the community
• North Lincolnshire Council has a loan available for removing hazards in homes in order to prevent avoidable emergency admissions.
• Guildford Borough Council has a grant available to remove hoarded materials from homes in situations where this is necessary to enable hospital discharge.
• Gravesham Borough Council has a more general grant available for people with hoarding tendencies that can be quickly accessed through a handyperson service after a referral from a health professional.

Whilst many councils do not mention hoarding in their housing assistance policies that does not necessarily mean that they do not have a policy in place. Often these policies/guidelines can be found in local self-neglect and hoarding protocols instead. Having such a protocol is essential for enabling an effective multi-agency response to hoarding and helping frontline staff.

The survey was sent out to a number of local councils that Foundations had an established relationship with, primarily in London and the South East. The response rate was 16.2%.

Figure 1 Source: Foundations’ survey with staff from 12 local councils in London and the southeast of England

Figure 2 Source: Foundations’ survey with staff from 12 local councils in London and the southeast of England

The previous section has shown that hoarding is addressed very differently in different areas. In some areas, it is the council providing a service, in some, it is the NHS or the HIA, in some it is a social enterprise.

All of these organisations use different interventions depending on the level of resources available and the scope of their expertise.

The biggest problems arise if the provided service is not a comprehensive solution but rather a response to a specific symptom. If a service provider has a decluttering service, for example, but does not address the psychological needs of the client then the hoarding will almost certainly recur.

If there is an enforcement issue that is addressed too early, then that may unnecessarily traumatise the client. If there are no enforcement tools available to the council then it may prove to be increasingly difficult to convince people to accept help with their condition. If there is a social enterprise willing to work with the patient on a long-term basis but there is no funding for decluttering the client will not receive the required help.

Even if a comprehensive service is offered there can be other obstacles to success. Where there is no suitable hoarding protocol and effective referral routes for additional support the person needing help may only receive some or none of those available services.

Most councils have difficulties in identifying people with a hoarding tendency who may need support, which is often due to the lack of personal contact with residents. Initiatives such as Make every Contact Count are invaluable in responding to the needs of all people who hoard and in identifying people who might not otherwise be known to the council.

There can be many other pitfalls too. It is important that these schemes are financially viable and it is therefore crucial to get eligibility criteria right and make sure that cases are assessed on an individual basis to avoid the provision of unnecessary services. As the interviews highlighted, every hoarding case is different: some can be solved by a sticker on a fridge while others will require ongoing support from specialist staff.

In order to avoid the problems outlined above and to reduce the risk of adverse social outcomes affecting both the individual and the system, a comprehensive response at the local level is required.

An effective service for people with a hoarding tendency requires:

• A specialised hoarding service with a dedicated caseworker coordinating the approach.
• Funding for decluttering, preferably delivered by a specialised hoarding company.
• Ongoing support to prevent relapses, for example, the provision of CBT, group therapy or peer support.
• Established referral networks and well-maintained partnerships.
• Close cooperation with enforcement services, the NHS, Fire Services.
• A local hoarding protocol setting out the steps of intervention and eligibility for services.

Other elements which are also desirable include:

• Social inclusion activities at a community centre.
• A range of interventions including the ‘Shoebox method’ (a less radical intervention of decluttering bit by bit).
• Self-help resources (such as Fire Safety tips, books, videos, contact details of specialist organisations).
• Advice and support when at the risk of eviction.
• Fire safety check and the installation of smoke.
• Financial advice.

Strategies that may help with individual cases:

• Explaining to the client the possible implications of not changing their beahviour.
• Offering to donate valued objects to charity or recycling.
• A recognition that people are often more willing to accept help from the third sector than from statutory services.
• Decluttering with small teams (2-3 people) so the client can feel in charge.
• Decluttering over multiple days so the client does not feel overwhelmed.

Useful sources of information

• Foundations – Hoarding Behaviour and Cluttered Homes
• National Housing Federation – Hoarding: Key considerations and examples of best practice
• NHS Choices – Hoarding Disorder
• People, Place & Policy Online: Issue 1: Treasures, trash and tenure: hoarding and housing risk
• Royal College of Psychiatrists – Hoarding
• Suffolk – Self-Neglect and Hoarding Protocol
• Multi-Agency Hoarding Framework: Guidance for Practitioners in Nottingham City and Nottinghamshire
• London Borough of Merton – Multi-Agency Hoarding Protocol

Interview Questions

The structure of the interviews was the following:

1. Why should hoarding be an issue to adaptation services?
2. Please describe the services you provide for people with hoarding
3. How do you identify people with hoarding tendencies who might need help and support?
4. Are there effective referral opportunities across organisations?
5. How should adaptation services respond to the needs of hoarders? In your experience what other agencies can also assist hoarders e.g. Fire and Rescue, NHS? Where more than one agency is involved how is support best coordinated/delivered?
6. Can you identify any factors which can help the development of effective services for hoarders?
7. Can you identify any factors that might limit the development of services for hoarders?
8. Is the respondent aware of existing good practice at other local councils?
9. Is the respondent aware of any stories of success where an intervention had lasting results?
10. What other resources would you advise to be considered for the report?