Hoarding and self-neglect – what social workers need to know

Safeguarding trainer Deborah Barnett examines possible interventions available to practitioners in a challenging area of adult social care

Photo: West Yorkshire Fire and Rescue Service

by Deborah Barnett

Are you, or is one of your colleagues, struggling to work with someone who hoards or self-neglects?

If so that’s unsurprising: engaging with, assessing and providing support to such people can be complex and frustrating, and often requires a clear understanding of the law to ensure actions taken are defensible. Many dedicated, compassionate practitioners are left struggling with cases, feeling alone and isolated.

In 2011 the Law Commission undertook a series of scoping studies in adult social care. This identified a historic lack of understanding of self-neglect, resulting in inconsistent approaches to support and care.

In an effort to address this, the Care Act statutory guidance 2014 formally recognises self-neglect as a category of abuse and neglect – and within that category identifies hoarding.

Community Care Live London 2016. Deborah will be presenting a session on hoarding at Community Care Live in November. Places are free for registered social workers. Book here.

A clear basis for intervention

This enables local authorities to provide a safeguarding response, including the duty to share information for safeguarding purposes; the duty to make enquiries (S42) and the duty to provide advocacy, where a person has no one to advocate on their behalf.

The change in eligibility criteria for social services and the focus on wellbeing, create a clear basis for social work intervention with people who hoard/self-neglect.

Safeguarding duties apply to:

  • any adult who has care and support needs (whether or not the local authority is meeting any of those needs); and
  • is experiencing, or at risk of abuse and neglect (including self-neglect); and
  • as a result of those care and support needs is unable to protect themselves from either the risk of, or the experience of abuse and neglect.

The duties apply equally whether a person lacks mental capacity or not. So, while an individual’s wishes and feelings are central to their care and support, agencies must share information with the local authority for initial enquiries to take place.

Enquiries may take place even when the person has capacity and does not wish information to be shared, to ensure abuse and neglect is not affecting others, that a crime has not been committed, or that the person is making an autonomous decision and is not being coerced or harassed into that decision. Safeguarding duties have a legal effect in relation to many organisations and the local authority may request organisations to make further enquiries on their behalf.

Better safe than sorry

The updated Care Act guidance issued this year identified that not all cases of self-neglect need to go to a S42 enquiry – perhaps the situation is not impacting on the person’s wellbeing, does not impact on others, or is not a result of abuse or neglect.

I would argue that someone hoarding is not going to share intimate details of themselves straight away. It can take time to develop trust and unless further enquiries are made (often requiring a multi-agency response to information gathering and capacity assessments) we may be leaving someone vulnerable, and making assumptions that cannot be justified later.

The purpose of a safeguarding enquiry (S42) is initially for the local authority to clarify matters and then decide on the course of action to:

  • Prevent abuse and neglect from occurring
  • Reduce the risk of abuse and neglect
  • Safeguard in a way that promotes physical and mental wellbeing
  • Promote choice, autonomy and control of decision making
  • Consider the individual’s wishes, expectations, values and outcomes
  • Consider the risks to others
  • Consider any potential crime
  • Consider any issues of public interest
  • Provide information, support and guidance to individuals and organisations
  • Ensure that people can recognise abuse and neglect and then raise a concern
  • Prevent abuse / neglect from re-occurring
  • Fill in the gaps in knowledge
  • Coordinate approaches
  • Ensure that preventative measures are in place
  • Co-ordinate multi agency assessments and responses

These responsibilities apply to people who hoard / self-neglect and whose health and wellbeing are at risk as a result. People may not engage with professionals, or be aware of the extent of their self-neglect.

For social workers this provides a significant challenge in developing relationships that empower the individual, or safety plans based upon what makes a person feel safe and well cared-for yet respect autonomous decision making, while juggling other duties and responsibilities.

Different causes and effects

Self-neglect manifests in different ways. It might be that a person is physically or mentally unwell, or has a disorder, and cannot meet their own care needs as a result. They may have suffered trauma or loss, or be receiving inappropriate support from a carer. The person may not recognise the level of self-neglect.

Self-neglect can occur as a result of dementia, brain damage, depression or psychotic disorders. It may be down to substance use, including misuse of prescribed medications.

According to the 2012 version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), hoarding disorder is described as a pattern of compulsive behaviour, involving accumulating numerous possessions that are not really needed. This identifies those who severely self-neglect or hoard as in need of care and support – therefore meeting adult safeguarding criteria.

Symptoms of hoarding disorder can include emotional attachment and distress over parting with possessions, regardless of value or usefulness, allowing possessions to interfere with day to day life and relationships, and social isolation.

Often these attachments can begin with trauma and loss, parental attachment and control issues and information processing deficits. Often people who hoard suffer from anxiety.

No quick fixes

It is important to explore with the person their history; listen to the way they talk about their life, difficulties and strategies for self-protection.

By doing this social workers can begin assessing why the person self-neglects and offer support in replacing attachment to objects with interaction and relationships with people and the community. Distress may lead people to seek comfort in having possessions; when faced with isolation they may seek proximity to things they’re attached to and when faced with chaos may seek to preserve predictability.

Early relationships can have quite an effect on how a person perceives the world and may not recognise their self-neglect – and may even find comfort in the situation. Deep-seated emotional issues, which have evolved as coping strategies, cannot be undone in an instant.

My upcoming session at Community Care Live London won’t wave a wand and make the complexities disappear, but will offer practical tools and advice, and clarity on defensible decision making and recording, and suggest ways agencies can support each other in addressing the complex safeguarding issues around hoarding and self-neglect.

For further information please contact debbarnett27@outlook.com.

14 Responses to Hoarding and self-neglect – what social workers need to know

  1. Louis August 22, 2016 at 8:56 pm #

    With the fast pace of statutory social work and turn around time or even turn over, I’m not sure how long term a social worker can engage with the same individual. Other sectors appear more able but with cut backs, I’m not sure. I think people with would need stability, consistency and support such as found in Floating Support Services and befriending services or even support groups

    • Deborah Barnett August 26, 2016 at 11:16 am #

      Thank you for your comments Louis. I am currently doing some work that covers the issues that you raise. The key for me is to get cases into the safeguarding process, in order that responses can be coordinated via a multi agency response. This does not necessarily mean that the safeguarding team must hold the multi agency meeting, this could be the most relevant agency for the persons needs and circumstances, with oversight from the Local Authority. The benefit of safeguarding is that statutory duties apply for agencies to cooperate for safeguarding purposes and for information sharing.

      Getting the person to engage with family and community can be hugely beneficial. To help this circles of support can be put in place, to ensure that the person, family and community can provide this support, with oversight and guidance from the Social Worker / Occupational Therapist.

      I do feel that the issues that you raise are not confined to working with people who hoard or self neglect, but to the wider arena of Social Work in general. I originally trained as a Community Social Worker, helping whole communities to function, building circles of support, organising community events, as well as individual assessment work. I was based within a specific community and knew most, if not all members of that community, bringing them together to help each other.

      To prevent soaring case loads of complex work, I believe that we need a radical change in Social Work, to get back to preventative Social Work in the heart of communities, where a real difference can be made. This would not only prevent the escalation of self-neglect, but would also prevent the escalation of most safeguarding cases, for both children and adults. I feel that social work can not be seen as just about the individual, it is about the family and the community too.

      In the meanwhile it would be great to meet with you and your colleagues at Community Care Live where I may be able to give you some hints and tips on working with the individual / family / community and defensible decision making in relation to self neglect.

  2. Bj Elke Petterson August 24, 2016 at 7:58 am #

    What social workers need to know is… how can I make better use of the Better Care Fund when I need a personal budget for a client whom hoards?

    Application of law, policy,and psychology is all very well but practical advice appears omitted from this article. That’s frustrating for social workers when they need practical solutions.

    Research tells us there is some truth in this that knowledge of housing associations is an area of Social Work that actually not many social workers know enough about. Perhaps if training also included awareness for example of the types of accommodation available to people then social workers will feel more confident about involving housing associations in ways that reduce the levels of hoarding from getting to safeguarding levels.

    • Deborah Barnett August 26, 2016 at 11:24 am #

      Thank you for your comments. I completely agree that we could make better use of the Better Care Fund in work across agencies.

      You may find it useful to read the full article or watch the webinar on Community Care Inform where you will find many practical solutions to working in a person centred way with the person hoarding and / or self-neglecting. If you send me an email I would be more than happy to share toolkits and other resources with you.

      I believe that we all need to share knowledge and the safeguarding process is designed to do just that, across agencies, including housing / housing support, environmental health, fire services, occupational therapy as well as safeguarding. Housing colleagues work hard at prevention, but do also need the support that other agencies can provide.

      • Bj Elke Petterson September 5, 2016 at 7:39 am #

        mark_wogan@yahoo.com

        More than happy to share this with you to abel able to access information to be able to further my knowledge on the subject.

        Kind Regards

        • Deborah Barnett September 14, 2016 at 10:00 am #

          Hi
          I have addressed the email to Mark as identified and attached the toolkit as requested. I would be delighted to hear any feedback that you have following use of the toolkit.
          Kind regards
          Deborah Barnett

  3. Jenny August 24, 2016 at 6:20 pm #

    This article has really resonated with some very difficult case work I have on at the moment in adult social care. I have experienced the struggle and isolation as a practitioner whereby services including IMCA and GP have simply written off pursuing engagement with a learning disabled adult who is severely self neglecting in the community . I think we are all so pushed for time that the consistent efforts to engage , build trust and relationship is therefore compromised . I’m not prepared to give up and will continue to fight for all decisions re my client to be defensible ones , even when it now comes to asking the Q to those other vital MDT professionals and colleagues ” if you were to stand up in court would you hand on heart be able to say you did your best ? ” this sometimes helps to get people back onboard .

    • Deborah Barnett August 26, 2016 at 11:35 am #

      Thank you for your comments. These are difficult times, but I always reflect on the reasons that I came into Social Work and feel that if I am not fighting for the rights of individuals suffering abuse and neglect what am I doing?

      One of the benefits of getting cases of self-neglect into safeguarding, is the statutory duty to cooperate. Feedback to the Safeguarding Adults Board about agencies not cooperating with their statutory duty to safeguard people may prove a useful way forward. It may be that agencies need support in understanding the importance of a person having a voice in the process and maintaining wellbeing, however, I recognise that engagement is often an issue and with limited resources in most services, responses are often prioritised to those with care and support needs who are most willing to engage.

  4. Steve Matthews August 24, 2016 at 10:09 pm #

    Really useful article. This problem often crops up as an issue for AMHPs – use of the MHA is not necessarily proportionate.

    • Deborah Barnett August 26, 2016 at 11:44 am #

      Thank you for your comments Steve. I do feel that use of the Mental Health Act in terms of detention is not appropriate, or proportionate in a majority of situations.

      Having a diagnosis can be helpful in exploring proportionate responses because the diagnostic element of the Mental Capacity Act assessment can be met. In people who self-neglect, research has found that the executive function of the brain can often be affected and this may affect a persons ability to plan for things such as housework and house maintenance. It also affects self care skills. There is also some evidence in a number of people who hoard, that there may be some impulse control issues affecting their decision making. These are things that could be explored further through a good mental health assessment. The other reason diagnosis could be useful is because access to Psychology can be very difficult without the diagnosis and this support can prove very valuable.

  5. Blair Mcpherson August 25, 2016 at 11:46 am #

    In his hospital bed he looked like a frail old man. The fall had shaken his confidence. He had lain there all night on the floor until the meals on wheels people found him. He wanted to go home.

    The doctor wanted him discharged and out of the bed. But there was a problem. The home visit with the Occupational Therapist and the social worker had revealed a life time’s collection of pornography.

    It was not the content of the magazines – the OT and social worker considered themselves unshockable – it was the sheer volume. Floor to ceiling porn.

    The hallway had magazines two deep and six foot high either side leaving a narrow passage way from front door to kitchen. The front room had magazines staked high on the table and all the chairs.

    It was the same upstairs, only the bathroom and kitchen were free of his reading material. There was a real danger that one of these towers of porn would collapse on to you to say nothing of the fire hazard that this ware house of adult literature presented.

    The man wanted to go home. The hospital wanted him to go home. The social worker wanted him to go home but he would need more than just meals on wheels. He needed a home help. The home help supervisor visited and said no way can I let my “girls” visit this house.

    The problem was not the pornography or providing support to a “sad dirty old man” but a health and safety issue. The house was too cluttered to be a safe work environment. The magazines would have to go.

    The social worker explained the situation to the ward staff but emphasised that neither she nor the home help could throw out anything belonging to the patient against his wishes. He didn’t see why he should have to throw away any of his collection.

    There was a brief discussion as to whether this behaviour constituted some sort of mental health problem but no one seriously thought it did. Someone needed to take the decision to clear the clutter.

    There was a real risk of a prolonged stay in hospital followed by a transfer to an old people’s home – something he didn’t want and didn’t need. In the end, in the absence of any relatives, the social services manager responsible for the care budget made a financial decision. A clean up team was sent in.

    Yet the response may be different in the future because the latest edition of a psychiatric manual published on behalf of the American Psychiatric Association has included this type of hoarding behaviour as a mental illness.

    The Diagnostic Statistical Manual of Mental Disorders is a globally recognised publication and has considerable influence on the treatment and diagnoses of people with mental health conditions.

    I am neither a psychiatrist or a behavioural psychologist but have worked alongside these professionals.

    In my experience the psychologists would say they may be able to help and the psychiatrist would say ‘well it may be a mental health problem’ but this type of low level mental health problem would not be a priority for the community mental health team, a response GP’s would recognise.

    So the risk is that no one will accept a referral from a GP either because it is a mental health condition and therefore the responsibility of the community mental health team, or because it’s a condition the psychiatric service is not funded to deal with. In the current financial climate it must target resources at those in greatest risk.

    Blair McPherson is an author and commentator on health and social care

  6. Deborah Barnett August 26, 2016 at 11:59 am #

    Thank you for you comments and sad story. It is a shame that someone who may need quite a lot of support and understanding is shunned from services and potentially suffered further loss of control.

    More accessible lower level mental health intervention is certainly a growing gap in services, however, I do not believe that hoarding that significantly impacts on the wellbeing of the individual should be seen as a low level condition. Judging by the increasing number of safeguarding adults reviews published on the subject matter, it is something that we need a whole lot more research into, to inform our decision making and support practitioners across multi-agency teams. We need to recognise proportionate intervention and work around the individual once all the risks, mental health and mental capacity issues have been assessed, to ensure that we are minimising harm, rather than transposing our own values and standards on others.

    Any further comments I have, I believe have been addressed in previous comments. I hope to get the opportunity to speak with you further about this should you attend Community Care Live.

  7. Gordon August 26, 2016 at 11:00 pm #

    A very interesting article.

    It seems to me that you’re utilising the safeguarding principles in exactly the opposite way to which they are intended.

    As someone with hoarding tendencies who presently works within the mental health system it seems to me a lot of people cannot tolerate the lack of control they have over other people’s lives.

    For instance the elderly Gentleman with his collection of pornography could be more considered an over zealous collector rather than a hoarder ( he kept two areas clear and only collected specific items) it may have taken many years to collect these magazines and if in good condition they could have had quite a value.

    I stumbled upon this article was looking for information on the mental Capacity Act which is not being implemented in my area of work.
    The people who suffer the most from this lack of implementation are those who cannot stand up for themselves, Whereas those who are vocal and assertive are left alone. It is the compliant who suffer, exactly the people whom the MCA is meant to protect
    Hoarding is not primarily related to OCD and will not be cured by removing the clutter which will only cause severe distress to the Horder

    I agree that it can reach proportions which require legal intervention when fire regulations, tenancies, environmental health concerns require legal action other than that I think people should be allowed to do as they wish

    Best interests decisions seems to be interpreted as a decision being made by those more capable or normal than the transgressors .

    Heaven Help Me when I get older.

    Please do not take these comments personally it is simply an observation I have made working in mental health for the past 10 years.

  8. Deborah Barnett August 30, 2016 at 3:50 pm #

    Hi Gordon

    It is difficult to put into perspective all the information required about self-neglect and hoarding in such a short article, but there is nothing that I disagree with in your response. In fact safeguarding principles are very person centred and the ethos of my practice, but no one can chose to pose a risk to others, or commit a crime and these matters must be addressed before looking at matters of capacity and consent. Best interest decisions can include recognising that there is no point living a safe but miserable life and I am sure that I would be the first to advocate this. Please have a look at my webinar, you may be surprised to hear of my own experiences and suggestions. Thank you for responding, I enjoy reading all the comments and feel that when such busy people take time out to make comments, they are worth responding to if I am at all able. Thanks again! Deborah Barnett