In developing this Leeds Self-neglect Strategy we are indebted to the twenty people with lived experience of self-neglect who have taken their time to share their views and experiences with us. This is just a summary of what they told us:

Building relationships is so important:

• "I don't trust many people and it takes me a long time to get to know someone. I used to live on the streets, why would I trust anyone?
• "Worker came to see me and asked loads of questions, I told her to get lost. Would you answer loads of stuff from someone you don't know?"
• "I have just moved to a different area and I can't have the same worker. I have worked with x for years and I don't want anyone else, so I have told them I don't want another worker."
• "It's hard to ask for help"
• "[It is difficult to engage with people offering support…] If it is just business like and if I feel like I am just a number…. If I didn't think they cared or weren't actually listening to me… [then] I tell them to get lost or don't answer the door"
• "[It can be like…] talking to a computer, feels like they are asking questions and responding like robots with a script… [when it is like this] I don't want to listen to what they have to say anymore or do as they ask". 

As is understanding and empathy for people's unique life histories and circumstances:

• "It is important to be listened to and heard, people to see how I'm living and understand the effect this has on me and my mental health. To understand I'm embarrassed without me having to spell it out."
• "Lots of people don't like drinkers, they talk to you like idiots. I can tell if someone is talking down to me".
• "I can bury my head in the sand and become worked up about talking to people and then I get fobbed off when I've worked myself up to it and it all feels a bit pointless. Puts me off trying".
• "[… you need to be able to] describe your life to someone and then they can help you find services and refer you to them. It's too difficult working it all out by yourself" 

What makes a difference:

• "I like it when people understand how difficult it is living on the streets, how it can change you as a person"
• "Don't tell people what to do. Be a nice person, kind, have a conversation, not just ask questions".
• "When they help show me where things are going wrong and we look at how things can change together"
• "Someone to listen, to care and hear my point"
• "Trust and understanding"
• "That they know what they are doing. Someone to listen. Someone who knows what support there is"
• "Someone kind, does what they say they are going to do"
• [I need someone to be] "Not judgemental, down to earth and real. Understanding and to care about my actual life not just how they think it should be".
• "I want to know they care and that they are doing things for me, not just because they have the power to do it.
• "The best way to do it is do things with me and talk things through.
• "Someone to listen, point me in the right direction"
• "Go that extra mile, more if needed"
• "Getting to know the person's background – makes more of a rapport".

We consulted with practitioners and services across statutory and non-statutory agencies as to the challenges and approaches required to best support people who self-neglect in Leeds. This is a summary of that they told us:

Time is a challenge:

• "In order to support patients with challenges such as this requires a lot of staff persistence and time. They need to be able to build relationships with staff, trust staff and get to a position where they can discuss their needs"
• "More time to work with individuals on a consistent basis / continuity of support"
• "Not having enough time due to workloads to be able to really build up a therapeutic relationship in order to help build trust"

Information and awareness

• "Having easily accessible information with regards to self-neglect so that professionals could identify behaviours and increase their understanding of the impact of how self-neglect affects individuals".

Easier access to services would assist

• "Greater awareness of services available to support around self-neglect"
• "More services that work with people with hoarding/behaviours"
• 'Easier access to counselling/therapy, drug/alcohol support and mental health support services' 

Need for earlier intervention

• "Professionals assuming a patient is just making 'unwise decisions' without considering the reasons for those actions is a barrier to care. In many cases this led to the patient being discharged from services providing the care"
• "In other cases the patient did not attend appointments or was not present which meant they missed care and again were discharged"
• "[Need to be] able to be pro-active and to offer support earlier to individuals prior to them being in crisis". 

A need for more extensive training

• "It is necessary to have an in depth understanding of how alcohol, substance misuse and mental health could contribute to self-neglect".
• "Lack of understanding around trauma awareness and strength-based approaches."
• "Specific training needed across partners on self-neglect and being able to provide a trauma informed approach"
• "[Greater] consideration of executive capacity" 

Models of support are worth exploring

•  'Dedicated teams for individual agencies'?
• "The Street Outreach model and Street Support in general is viewed to be a good practice model".
• "Dedicated self-neglect team that do visits" 

A focus on positive engagement

• "Patients need to feel safe, valued, loved, advocated for, affirmed, allowed to fail and restart"
• "Starting off with a small package of support and then gradually introducing additional support where appropriate".
• "Giving a person your time as a worker and making them feel they are worth your time can go a long way to changing their outlook on life"
• "Respecting boundaries and giving the individual control over our interventions. Taking small steps and working alongside the individual to build up trust and rapport".
•  "I accessed the customer alongside another agency who already had a trusting relationship. I recognised the customers fear and let him set the tone and pace. I recognised his abuse and criticism as a defence mechanism and tried to work around it".
• "The person was reluctant to divulge information that may be considered embarrassing for that individual to a professional that they don't know too well. Also not wanting people in the house for the same reason, so appointments would regularly be cancelled by the service user".
• "I had to build up trust and work at a pace he could manage, at first he failed to acknowledge he had an issue with hoarding… he did struggle to build up a connection with me and at times he refused my support but with time and patience he began to trust me".
• "Having difficult conversations, honest… Not giving up, maintain hope for change"

Multi-agency working is really important

• "Lots of silo working is no good for the patient".
• "Partnership working is identified as a mechanism as to when things went well"
• "Multi-agency approach, professionals meetings, shared knowledge/ideas [is important]"
• "Nominated lead professional [is important]"
• "The joint working worked well, as the individual would only communicate with one person at times, usually me. We had regular multi agency meetings [which really helped]".

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The LSAB Thematic Review in relation to Self-neglect included a review of learning issues across seven individuals, who had died in circumstances of self-neglect in Leeds.  The report was produced by expert independent authors, who identified a series of development and practice challenges for Leeds:

• How to further enable practitioners to have the time and skills to persist with engagement in the face of refusals where there are significant risks of self-neglect arising from care and support needs and health concerns;
• How to improve understanding of the significance of mental capacity, the importance of explicit assessment in conditions of high-risk decision-making, including consideration of executive function, particularly where alcohol dependency is present;
• How to promote more consistent awareness across all agencies of fire risk and associated risk management strategies;
• How to promote a "think family" approach that sees exploration of familial and social relationships as an important enquiry in order to appreciate signs of safety but also risks of undue influence or coercive and controlling behaviour;
• How to ensure referral of safeguarding concerns of self-neglect cases and that repetitive referrals of concerns prompt safeguarding enquiries;
• How to build on information-sharing and communication between services, both statutory and third sector, by ensuring that a response to need and risk is coordinated, with a lead agency and nominated key worker, and overseen by regular use of multi-agency meetings;
• How to ensure that supervision promotes and records reflection on the approach being taken, challenges any normalisation or desensitisation of risk, and supports practitioners to manage complex and challenging issues;
• How to use the resources that are available in Leeds to best effect in supporting people who self-neglect, particularly where mental health needs and alcohol dependency are both present.
• How to promote best practice in relation to self-neglect where the person at risk is alcohol dependent
• How to prevent or mitigate the risks from fire death, especially in cases involving hoarding
• How to promote trauma-aware and trauma-informed practice in working with people who self-neglect.

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