Improving support for people who hoard and self-neglect

Project Background

IMPACT Facilitator, Fiona Wright, is working with Aberdeen Health and Social Care Partnership looking at improving support for people who hoard and self-neglect.

IMPACT’s initial evidence review shows that awareness of hoarding and self-neglect has grown. This progress is visible in statutory guidance and policy. However, there is still limited research into how effective interventions are. Moreover, the review highlights the need for further research that captures the lived experiences of people facing self-neglect and/or hoarding, through direct engagement.

IMPACT Factfile

Pre-Project Evidence

The evidence showcased the following themes:

Self-neglect (SN) and hoarding behaviours (H) are complex and overlapping, with both areas often being misunderstood, and with uncertainty over effective support strategies. There is greater evidence focusing on older adults, which reflects greater levels of contact with services amongst this population group rather than the true prevalence of self-neglect and hoarding. It is estimated that 1.5%-6% of population meet criteria for hoarding disorder but only 5% seek help. Self-neglect is under-reported and inconsistently recorded across UK.

Self-neglect is commonly linked to trauma, mental illness, dementia, substance use and physical illness. Hoarding behaviours can also be triggered by trauma, and are associated with anxiety, obsessive compulsive disorder (OCD), and social isolation.

Legislation across the four UK nations addresses self-neglect and hoarding behaviours but as individuals do not often seek support voluntarily, it is usually severe situations that come to the attention of social work under safeguarding legislation. Mental health and capacity are often questioned, however the Scottish Government’s (2022) practice guidance stresses that safeguarding ability is different to mental capacity. It is important that practitioners can assess whether the person is unable or unwilling to safeguard; if they understand the consequences of their actions, and if they are unable or unwilling to take the steps required to care for themselves.

Standardised tools for self-neglect are currently lacking, and intervention and support relies on professional judgement. Whilst there is the clutter image for hoarding behaviours, both self-neglect and hoarding behaviour require trusting relationships, as well as a trauma informed, person-centred, multi-agency approach.

Practitioners face dilemmas when it comes to autonomy and protection, particularly when individuals have mental capacity. Multi-agency working can be hindered by siloed approaches, unclear roles, and inconsistent protocols. The emotional toll of this work can also be considerable, requiring supervision and support for staff. Interventions such as ‘clean and clear’s’ can offer modest improvements to enhance safety and well-being but the evidence shows that their long-term effectiveness is limited. These interventions can also be costly, reaching up to £60,000 per hoarding case.

Lived experience and practitioner insight is rarely included in research. However, where it has been included, the following have been highlighted: importance of empathy, patience, honest and non-directive support. People want to feel listened to and have control over their decisions.

Theory of Change

The IMPACT Facilitator and Aberdeen HSCP developed a theory of change based on the following local context:

  • The increase in referrals to ASP for self-neglect post COVID
  • Services are under pressure in relation to budget and recruitment of staff
  • Number of services involved in supporting individuals with hoarding behaviours and/or self-neglect
  • Outcomes for individuals can be serious including death where drug related death reviews and ASP reviews have highlighted potential opportunities to have intervened earlier.

The project aimed to explore opportunities to improve support for individuals experiencing self-neglect and/or hoarding behaviours. The following steps were identified to realise these aims:

  • Production of a toolkit to synthesise key knowledge for practitioners and ways of supporting people experiencing self-neglect and/or hoarding behaviours.
  • To produce training material and guidance for trainers.

Other steps were identified and included when the project had started and after conversations with practitioners and people with lived experience. These were to produce:

  • Multi agency guidance
  • Peer support guidance

Project Engagement and Collecting Evidence

A range of project engagement activities were identified and undertaken to realise the aims of the project.

AHSCP created a Self-Neglect and Hoarding practitioner’s forum in the first quarter of 2023 following a case review and learning event. This forum meets quarterly, with representation from the partnership and partners including Scottish Fire and Rescue Service, Police Scotland, environmental health, housing, advocacy and third sector partners. The forum provides learning opportunities and opportunities to share current practice in terms of what works well and barriers to practice. The forum was used to explore practitioner insights into self-neglect and hoarding and to discuss what project outputs were important for staff.

Staff across the partnership and other services received information about the project through email, when attending team meetings and through newsletters, and were invited to consider providing their insight into the project. In total 41 practitioners fed into the project between May and Sept 2025.

The Facilitator also engaged with practitioners, services, and peer support from other areas across the UK to obtain insight into how they have progressed support within their local areas for self-neglect and hoarding. The insights shared helped to shape the project. With IMPACT’s connections across the 4 nations, connections through the host university, the host agency and internet searches on support for self-neglect and hoarding behaviours, the Facilitator was able to meet with the following services, practitioners, and peer support groups across the UK

  • Transform Forth Valley Self Neglect and Hoarding Servic
  • Hoarding Taskforce led by IRISS (Institute for Research and Innovation in Social Services)
  • Neath Port Talbot
  • Leicester Council
  • Hoarding UK
  • Clutter Chat

Obtaining lived experience input proved challenging throughout the project due to the subject and, as explained in the evidence review, individuals can feel shame and stigma when discussing issues of self-neglect and hoarding behaviours. With the support of the advocacy project, the Facilitator was able to meet with an individual with lived experience, and they provided their insight which has been captured later on in the summary report.

Project Outcomes

Findings from practitioners

The findings are clustered into five themes:

Confusion persists around definitions of hoarding, excessive clutter, and disorganisation, with some practitioners being unsure if these are standalone conditions or if they are linked. Hoarding can form part of the person’s identity but labelling individuals as ‘hoarders’ risks overlooking the ‘whole person’ and can lead to shame and stigma. The severity of self-neglect and hoarding varies, yet practitioners have identified that hoarding often goes unrecognised due to limited contact with services or from practitioners not being invited into people’s properties. While the evidence review mentioned that self-neglect and hoarding can appear more prevalent in older people due to individuals from this population group coming into contact with services more often than others, the practitioners who shared their insights explained that they have worked with individuals of all ages and backgrounds, including care-experienced young people and people affected by substance use, as well older individuals. People who were referred under Adult Support and Protection typically arise at crisis stage, with referrals having increased since COVID-19. Some individuals also repeatedly return for support. Practitioners also highlighted the need for greater awareness and person-centred, tailored support for individuals.

Practitioners highlighted that hoarding behaviours can often be linked to trauma, social isolation, mental health, and significant life transitions, such as retirement or redundancy. For care-experienced young people, transitions from care can be particularly difficult as they have not been shown essential life skills. Furthermore, some practitioners also identified that items are frequently kept with good intentions, such as plans to fix the items or sell them online, but limited means or motivation can often prevent follow through. Emotional undercurrents of loss of identity and shame recur throughout, which can further compound reluctance to engage with support. These factors highlight the complexity of self-neglect and hoarding behaviours and the need for person-centred approaches.

Some practitioners reported awareness of relevant legislation but also emphasised the need for better guidance that feels to my role/practice’ and which does not simply focus on legislation and procedures. AHSCP has multi-agency guidance but awareness of this and where to access it varied across different services. Finally, some practitioners highlighted concerns about GDPR, with unclear protocols hindering their confidence in information sharing and collaboration.

Practitioners reported that interventions and support are often highly individualised, relying on the experience and personal networks of practitioners rather than consistent processes and frameworks. Clearance of properties are frequently not approached from a trauma-informed perspective, which can exacerbate feelings of shame, guilt, and lead to feelings of mistrust towards practitioners and services whilst not addressing the root causes. One practitioner noted that the ‘home is a person’s nest’ and it is important to work with dignity and respect. Practitioners felt that support should form part of a ‘person’s journey,’ using clear and accessible protocols with non-judgemental approaches. Whilst small, incremental steps are taken by practitioners, which can be beneficial for the person seeking support, these are sometimes perceived as insufficient in professional’s meetings. Practitioners often seek supervision for guidance due to unclear processes and support pathways. Overall, it has been noted that services tend to be reactive particularly when it comes to hoarding behaviours rather than proactive because of limited resources and supports in this area. Practitioners feel that there is a need for more structured, co-ordinated, and trauma-informed responses.

Practitioners highlighted significant challenges when supporting people with self-neglect and particularly those where hoarding behaviours have been identified. One practitioner noted how they ‘feel immobilised’ and another stating how they ‘can’t do everything, be everything to everyone.’ One identified the need for both practitioners and people with self-neglect and hoarding behaviours to know that ‘there is a way out.’

Practitioner views on what effective support looks like

A view shared by practitioners was that effective practice in this area relies on non-judgemental communication (verbal and non-verbal) and relationship-based work. Taking a person-centred focus rather than a service-centred focus and concentrating on what the person needs in terms of support should be the priority. This can also be supported by reflective practice and regular supervision with a focus on support for the practitioner’s well-being. Advocacy and collaboration with other professionals (such as Adult Support and Protection (ASP) and Duty Social Work) were seen as important, alongside multi-agency co-ordination without rigid time constraints. Underpinning this, is the importance of training that includes clear aims in supporting individuals. One practitioner identified, the importance of ‘getting back to basics’ in ensuring basic needs are being met (such as a safe place to live, access to food) and working from there was also highlighted. Access to mental health services and regular housing reviews were also mentioned by practitioners as being effective forms of support.

Insights from lived experience

Due to the sensitive nature of self-neglect and hoarding and the feelings of shame and stigma which can be associated with these issues, opportunities to gather lived experience input were limited. However, we were able to access some contributions and the insights included in this report are reflective of these experiences relating to hoarding behaviours. The following themes were found from the information shared:

It is important to focus on the language used as the ‘hoarding label’ can create further feelings of shame and stigma. Instead, consider using the word ‘attachment’ as this allows insight into the person’s history and what kind of attachment that they have to their belongings.

It is also important to take time to get to know the person’s history and the reasons that they are attached to items by asking what does (attachment/collecting) it means to the person. This is because attachments and collecting can make someone feel good despite the difficulty that it may cause and being unable to stop by providing comfort and pleasure at that moment. It is important to make a connection with the person as not doing so can create barriers to the person opening up and seeking support.

Clear outs provided by cleaning companies that are not interested in going through items is considered unhelpful and can result in further distress. Lack of consistency from professionals not ‘following through with what you say you will do’ and ‘bounced about’ between services is also particularly unhelpful as it makes it unclear as to who can support with what or how to contact professionals. The length of time for action (i.e. to get things moving) and the length of time it can take for things to progress can also impact negatively on the person’s motivation. Feelings of shame about the situation can also stop people from seeking support. Additionally, if support is not visible or accessible, the person may be unaware of the steps they can take, which can lead to further feelings of isolation and disengagement.

Instead of asking ‘why did you let it get like this,’ let the person talk about it.

  • It is important to build relationships as most people will have the answer to ‘why,’ but they may have been hiding it from themselves as it ‘can touch on old hurts.’
  • People don’t need saved or rescued but need ‘knowledge of their own power.’
  • Be consistent in supporting the person.
  • It is important that the person has knowledge of how to speak out and ask for support and knows what support is available.
  • Empathy is important and people should not be shocked by what they see.
  • Be clear as to what services can do.
  • It is important that the person can trust the person that is supporting.
  • Services and support should communicate with each other.
  • The person should feel heard and respected.

Project Outputs

The project aimed to look at ways support could be improved for people who self-neglect and have hoarding behaviours. To achieve this, a series of coproduced outputs were designed following input from practitioners and lived experience. Some are specific to AHSCP whilst others will be tailored specifically to a wider audience through IMPACT.

An event was scheduled on the 12th of December 2025 that invited practitioners from within and outwith the AHSCP to feedback findings of the IMPACT project and review and comment on the suggested outputs. A total of 17 practitioners attended the event and included the following services: Justice Social Work, Care Management, Advocacy, Health (physiotherapy), Housing, Alcohol and Drugs Action, Care Management, Community Care, Adult Support and Protection, Police and Bon Accord Care.

Outputs specifically for AHSCP

A toolkit for supporting individuals was coproduced from the themes identified by practitioners and people with lived experience. This emphasises the importance of building trust and emotional safety with individuals, person-led and respectful engagement, practical help and navigating challenges, and connecting through communication. The importance of including support for practitioners supporting individuals with self-neglect and hoarding behaviours was included due to the emotional impact that can be experienced and the potential for vicarious trauma.

Feedback

Practitioners highlighted that this output reflected practitioner and lived experience input with it being clear, practical and ‘suitable to for all partner agencies,’ giving ‘consistency’ due to detailed processes which will reduce sole focus on the ‘personal’ and professional ‘judgement by practitioners.’ Suggestions for this output focused on condensing some of the content, adapting some of the layout and including additional local support services and possible single points of contact (SPOCs) to streamline collaboration.

This guidance presents different options for multi-agency teams and services and draws upon the lessons learned from practitioners and people with lived experience about the importance of systemic and structural challenges. This guidance emphasises the importance of involvement and communication across all services involved in supporting the individual through structured and co-ordinated processes with shared responsibility across all services.

Feedback

Practitioners highlighted that this output reflected practitioner and lived experience input, reflecting the realities of multi-agency working. It was noted that it was ‘good to have a structured approach’ with options for ‘models to change.’ Suggestions for this output focused on further information for funding responsibilities, timescales to implement suggested changes but practitioners were aware that further adaptations would be taken forward by the partnership.

The training outlines and guidance provides an overview of the multi-agency training package with suggestions as to how the package can be developed and made available for use across different services when required. This drew upon the lessons highlighted by staff about the fundamental importance of training for building confidence, deepening understanding, and ensuring consistent responses across services.

Feedback

Practitioners highlighted that this output reflected practitioner insight and lived experience. The ‘clear and concise’ guidelines were emphasised with practitioners noting the importance of the topic agendas and learning outcomes. Practitioners liked the ‘train the trainer’ model detailing that it was sustainable to have practitioners trained across different services to deliver in-house training. Some suggestions to enhance this output focused on adding safety guidance and adding more scenarios into case studies.

During discussions with practitioners and people with lived experience, including from people in other areas of the UK, peer support emerged as being a vital support offering connection and shared understanding that can help reduce the shame and stigma experienced. Important insights were shared by people who have helped to set up local peer groups specifically for hoarding, people who have attended peer support group (in relation to substance use), and trainers who can support local areas to set up practitioner supported peer groups.

Feedback

Practitioners highlighted that this output reflected practitioner insight and lived experience. Some practitioners expressed an interest in supporting to develop local peer support groups and added that it allows for a safe space for individuals to address isolation and reduces stigma in this area. Practitioners also highlighted the potential of exploring hybrid options and including guidance on confidentiality and boundaries.

Across all outputs, respondents agreed that the outputs accurately reflect both practitioner insight, the evidence review and lived experience. The documents were consistently described as clear, comprehensive, practical, and accessible, offering a strong foundation for supporting individuals experiencing self-neglect and hoarding.

Implications for Wider Policy and Practice

The IMPACT project findings and outputs will be further amplified within Aberdeen City Health and Social Care Partnership through senior management groups, to review the outcomes of the project and share the findings across the partnership allowing further opportunities for staff to review and comment on the outcomes and pathway forwards.

It is anticipated that a focus will be placed on what works and what effective support looks like, as the evidence from research, lived experience and practitioners throughout the project have all focused on the same themes and the importance of putting people first. There are also plans for the partnership to share the findings with IRISS to further embed shared learning and a national, co-ordinated approach to self-neglect and hoarding support.

Furthermore, a lens has been placed on the importance of peer support and lived experience input and co-production as without this we are not truly reflecting, acting on the words and experiences of individuals- empowered support. Learning from the project will be shared by IMPACT with the other nations that had contributed their knowledge and experiences to the project. Aberdeen Health and Social Care Partnership will continue their engagement and learning from the project.

Meet Our Facilitator: Fiona Wright

Fiona Wright

I’m Fiona, and I work in Aberdeen City as a Development Officer for Justice Social Work. In my role, I review and develop drug and alcohol support pathways for people within the justice system. I also have experience as a practitioner in justice social work in Aberdeen, as well as in drug and alcohol services and housing support in Glasgow. In this facilitator project, hosted by Aberdeen Health and Social Care Partnership, I aim to improve support for people who hoard and self-neglect in Aberdeen.

    I believe meaningful change must combine research evidence, practitioners’ insights, and lived experience. IMPACT places these values at its core, creating real opportunities to implement change locally and across the UK.

    I hope this project continues to spotlight self-neglect and hoarding. It is essential to amplify voices across the city, co-produce ideas, and drive positive change in this area.

    By the end, I hope we see the positive work happening in the city recognised and expanded. I look forward to seeing the benefits of co-production in practice and understanding the impact it has on self-neglect and hoarding support.

    Project Host Organisation

    Aberdeen Health and Social Care Partnership have a responsibility for a wide range of services across adult health and social care.

    Why did you want to be involved with IMPACT?

    IMPACT’s aims align well with our strategic priorities. Self-neglect and hoarding are areas we’ve identified for development. We recognise the need to work alongside our partners and people with lived experience. Therefore, this project helps us combine evidence-based practice with real-life experiences to improve outcomes for those affected.

    Why do you think a centre like IMPACT is important?

    IMPACT helps us understand what the evidence tells us. More importantly, it enables us to co-produce services with people who have lived experience. As a result, we can work to improve outcomes for everyone.

    What are your hopes for the project?

    We hope this project will:

    • Ensure we use the latest evidence to improve practices and outcomes.
    • Support our workforce to work effectively, drawing on evidence and lived experience.
    • Build a multi-agency approach to tackling self-neglect and hoarding.
    • Understand what works well and what does not in current processes.
    • Develop learning and development resources to better equip our workforce

    What might be the challenges?

    We are facing challenging financial circumstances. In addition, there is growing demand for social care services, which adds further pressure.