We are here to help whether you, or someone you know, is faced with the challenges of a hoarding disorder.

Compass Support, funded through Birmingham City Council Prevention and Communities Funding, have responded to the important issue of self-neglect and hoarding in the Reddicap and Castle Vale wards of Birmingham, with a specific project that focuses on supporting both organisations and individuals through a multi-agency, person-centred approach.

What is hoarding?

‘Hoarding can be described as ‘the collecting of, and inability to, discard of large quantities of goods, objects or information’.

Hoarding is a mental health condition.  It was recognised in 2013 as ‘Hoarding Disorder’ in the DSM-V (the fifth edition of the Diagnostic & Statistical Manual of Mental Disorders). Then the World Health Organisation (WHO) in 2018 also recognised hoarding as a medical condition.

Due to the secretive nature of hoarding, it is difficult to know precisely how many people are affected. A conservative estimate is that between 2% and 5% of the population, which equates to at least 1.2 million households across the UK and 22,000 people in Birmingham are affected by hoarding behaviour.

The three main forms of hoarding are:

Object Hoarding

It consists of a person hoarding either a mixture of objects for example clothes, food, newspapers, toys or an excessive amount of one specific type of object.

Animal Hoarding

Animal hoarding is defined by the keeping of larger than usual numbers of animals, without having the ability to properly care for them and at the same time the owner denying or not seeing there is an issue (Atkins 2013).  Animals are often not provided with basic needs such as adequate nutrition, space, shelter and medical care. In addition, they are usually poorly socialised with parasitic diseases and untreated wounds.

Data Hoarding

Data hoarding presents itself with the storage of data. This involves collections of emails, computers, electronic hard drives and computer storage devices.  This is a new addition to hoarding, so research and understanding are still limited.

Self-Neglect

Self-neglect can take on many forms but is often associated with a person’s inability to self-care. The Care Act 2014 defines it as a term covering:

“A wide range of behaviour neglecting to care for one’s personal hygiene, health or surroundings, and includes behaviour such as hoarding.”

Signs of hoarding

Characteristics of hoarding may include:

  • Crowded and cluttered areas within the living environment, which makes it difficult to use the space for its intended purpose. (For example, unable to use the bathroom to wash or bathe, kitchen to cook or unable to sleep in the bed due to clutter).
  • Emotional difficulty discarding items, which to others hold very little value or are considered to be rubbish.
  • A need to save items and the thought of getting rid of them causes feelings of distress and/or anxiety.
  • Hoarding causes significant problems and often leaves a person or family living in an unsafe and unsanitary environment. It can contribute to a deterioration in a person’s mental and physical wellbeing, cause social isolation and reduced social functioning, and affect the general safety of the person/others. For example, there is an increased risk of fire, tripping, or items piled up falling onto people.
  • Hoarding not due to other medical conditions that can be addressed, such as physical disability, other mental disorders, or brain injury.

Causes of hoarding

There are many different reasons why a person self neglects and/or hoards; below are a range of the most common reasons. It is often difficult to identify the exact cause of why a person hoards and they may not have insight themselves into its origin. However, the experience of ‘trauma’ is viewed as one of the main reasons behind hoarding behaviour.

  • The impact of abuse or neglect
  • Childhood trauma, childhood abuse or neglect, adverse childhood experiences
  • Unmet care or support needs
  • Substance or alcohol abuse
  • Learnt behaviour through being brought up in a hoarding household
  • Executive Dysfunction/Dysregulation can inhibit a person’s ability to plan; organise; prioritise; start/finish tasks & make decisions
  • Genetic link
  • Physical inability to carry out own personal care or household tasks.
  • Impact of experiencing domestic abuse
  • Traumatic life events – loss and bereavement ( redundancy, eviction)
  • Find comfort in objects

What can I do if I think I’m starting to hoard items?

  • Contact your GP to discuss your concerns. It might be worth requesting a home visit so the GP can assess and see the extent of your hoarding and clutter.
  • If you have difficulty talking about your hoarding behaviour you could always use an ‘icebreaker’ form, which is available to download and print off and take this along with you to your GP appointment.
  • If you are happy to, take some photos of your living environment to show your GP.
  • If you have a friend or family member who you trust, think about asking them to go along with you to a GP appointment for support.
  • Write down any questions you have that you want to ask or anything specific you want to say.
  • Complete the Clutter Rating Image Scale and take that with you to discuss with the GP.
  • Join a Hoarding Support Group. You can find details of groups in the Birmingham area at www.hoardinguk.org/support-groups/birmingham

Support for family and friends

Supporting a friend or family member who hoards can be challenging, particularly if you live in the same household.

Here are a few tips when helping someone who hoards:

  • Encourage them to talk about their feelings regarding their living space and possessions.
  • Encourage them and, if they want, support them to attend a GP appointment to discuss getting professional help with their hoarding and general mental health.
  • Let them take the lead and be in control over their possessions. As helpful as it might seem, ‘tidying up’ or having a good ‘clear out’ for them is very likely to make the situation worse, not better.
  • If living in the same household, try and establish some set ‘ground rules’ for communal areas.
  • Keep things positive. Point out their successes of discarding items or decluttering, no matter how small.
  • Offer them reassurance that you know how difficult it is for them and you are there to help.
  • Look after your own mental wellbeing; it can be stressful supporting someone who hoards, particularly if they do not have insight into their condition. Ensure you have someone you can talk to and support you.

For further resources for friends and family members supporting someone who hoards, check out www.mind.org.uk

Resources

If you believe you or someone you know might have a Hoarding Disorder there are tools that can be used to help identify the level of impact it is having on yours or their life. Check out the tools below to help give you a better understanding of the situation. 

Hoarding Questionnaire

If you or someone you know is ready to start tackling hoarding, completing the clutter questionnaire can be a useful tool. It can help to identify hoarding behaviour, the impact on daily living, as well as thoughts and feelings around discarding items.  This can be a good starting point to plan and develop strategies to tackling hoarding behaviour.

Image Clutter Rating Scale

One of the most widely used tools to identify the level of ‘clutter’ is the Clutter Image Rating Scale (IRS).  This is a pictorial scale which enables the individual or  those working with them, to identify the level of clutter in the property. It can also be used to understand more about an individual’s insight into their hoarding and if there is ‘clutter blindness’ which is the inability to see the extent of clutter in the home. It can also be used as a motivational tool, asking individuals to identify what they would like their living area to look like.  

Clutter Assessment Guidelines

When using the Image Clutter Rating Scale, it is also worth considering the additional information for each level within the scale.

Does your work bring you in contact with people who hoard?

If you are a support worker or frontline worker and your role brings you in contact with people who have hoarding behaviour,  as well as the above resources, the following may help you in your approach to supporting them.

Best practice toolkit

To assist frontline workers in supporting people who have hoarding behaviour, Compass Support has developed a ‘Working with People Who Self-Neglect or Hoard Best Practice Tool Kit’. Please use the below form to request a copy of this tool kit, or if you have any questions please don’t hesitate to get in touch.

     

    Hoarding multi-agency meeting

    As part of the Hoarding Project, Compass Support has set up and run regular Hoarding Multi Agency Pathway Meetings (HMAP).  The meetings are open to workers from organisations in all sectors (i.e. housing, statutory, voluntary, private landlords etc.) who cover the Castle Vale & Reddicap Wards.  The meetings aim to:

    • Develop a multi-agency referral pathway and improve multi agency communication.
    • To maximise the use of existing resources and services for the benefit of the citizen to reduce the need for compulsory solutions.
    • Identify workers who are supporting a citizen with hoarding behaviour
    • Develop best practice and creative ways of engaging with individuals who self-neglect and hoard.
    • Promote a trauma informed approach to supporting people who self-neglect or hoard
    • To ensure that support is person-centred to meet the needs of the individual

    If you are currently working in the Castle Vale or Reddicap wards and surrounding areas with someone who hoards; or your role can bring you in contact with people who hoard and you would like to join the meeting; please contact Hilary Tomlinson on 0121 748 8111.

     

    Who can I reach out to for help?

    For a variety of resources and helpful links, please check out the below for more information. Alternatively you can complete an online referral form for Birmingham City Council’s Adult Social Care Services and Support by clicking here.

     

    Finding us

    Make an enquiry

    If you want to find out more about the issue of hoarding and the work of Compass Support’s Hoarding Project, our friendly, professional staff will be more than happy to answer any questions or queries you may have.

    Tel: 0121 748 8111

    Email: hilary.tomlinson@compass-support.org.uk

    Or submit your enquiry via our contact form

    Icebreaker Form

    If visiting your GP, why not take along the hoarding ‘icebreaker form’ to help you explain your feelings. Simply click below for your copy.