Leeds Self-neglect Strategy


Always Care:

Leeds Self-neglect Strategy

January 2023 – January 2026

Voices of people who self-neglect:

"I got it into my head that I'm unimportant, so it doesn't matter what I look like or what I smell like"

"I don't have time to make a note of everything in the paper that has an interest to me   

             and so I'm very fearful of throwing something away".

"I get tired because daily routines are exhausting me, to do the simple things like get washed, put on clean clothes, wash my hair". 

Suzy Braye/Michael Preston-Shoot Research

Foreword

Our Ambition is for Leeds be a city that always comes together to support and protect the safety and wellbeing of people who experience self-neglect. 

Self-neglect can involve a wide range of behaviours that can result in a significant risk to a person's health and wellbeing, such as a lack of self-care and lack of care of their living environment, including hoarding.

A key feature of self-neglect is that the person also declines support or services that could reduce or remove the risk of harm.

Whilst everyone makes decisions that others may consider to be unwise, practitioners and services must never dismiss self-neglect as a 'lifestyle choice'.

"Is it really a choice when:

  • You don't see how things could be different?
  • You don't think you're worth anything different?
  • You didn't choose to live this way, but adapted gradually to circumstances
  • Your mental ill-health makes self-motivation difficult?
  • Impairment of your executive brain function makes your decisions difficult to implement?"[1]

We know that people who self-neglect can find it difficult to allow practitioners and services into their lives, to help them with behaviours that whilst harmful, may have also helped them to manage stress and trauma.

We also know the challenges for practitioners and services in engaging and supporting people who for various reasons, find it difficult to accept that help.

This is why we have developed this Leeds Self-neglect Strategy.

Our approach is informed by:

  • The lived experience of people in Leeds who self-neglect
  • The experiences and views of practitioners and services  
  • Compassionate and trauma informed approaches, and
  • Learning from Safeguarding Adults Reviews (SARs) in Leeds.

This Leeds Self-neglect Strategy sets our ambitions for the next three years; it cannot however be achieved by any one agency, any one partnership or any one strategic board alone.

To make real and lasting differences into how we support people who self-neglect in Leeds this needs to be a citywide approach.

We are asking for all organisations, partnerships and strategic Board's to come together to help us support and protect people who self-neglect in Leeds.

  • Richard Jones CBEIndependent Chair, Leeds Safeguarding Adults Board
  • Helen Christodoulides, Deputy Chief Nurse, Leeds Teaching Hospitals


Contents

1.   What citizens with lived experience told us

2.   What practitioners and services told us

3.   What we learned from our Safeguarding Adults Reviews

4.   Our Three year self-neglect strategy

      4.1   People

      4.2   Prevention

     4.3   Partnership

    4.4   Practice


1.   What citizens with lived experience told us

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".

2.   What practitioners and services told us

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]".

3.     What we learned from our Safeguarding Adults Reviews 

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.

4.  Our Three-Year Self-neglect Strategy

The Leeds Self-neglect strategy is based around four core pillars: People, Prevention, Partnership and Practice.

These four P's build upon the learning from citizens, practitioners, services and our Safeguarding Adult Reviews in Leeds and reflect the areas of development that need to be taken forward across the city.

As no one body, partnership or organisation can make the difference alone. We are asking all organisations, services, and strategic partnerships to support this strategy, to own the areas of development as their own, and to take the always care commitments:


Always Care Commitments:

People:           Always work with and alongside people who self-neglect

Prevention:    Always work to prevent the risk of serious self-neglect

Partnership:   Always bring partners together to support those at risk

Practice:         Always develop and support best practice in Leeds


The following sections set out our plans as a Safeguarding Adults Board towards achieving these commitments for people in Leeds. They also set out our expectations of all partnerships, organisations, services and practitioners that work to support people who self-neglect.


4.1 PeopleAlways work with and alongside people who self-neglect

Our Leeds citizen-led statement:

"Don't judge me. Be on my side"


Our commitments as a Safeguarding Adults Board:

A.    Work with citizens with lived experience in developing our approaches to self-neglect

We will aways seek to co-produce our approaches with people with lived experience of self-neglect and services

B.    Promote a skilled workforce in Leeds able to working with and alongside people who self-neglect

  • Develop a citywide Learning & Development plan for safeguarding in Leeds, inclusive of self-neglect
  • Develop safeguarding supervision guidance, with specific reference to self-neglect
  • Promote strength-based person-centred approaches to practice in self-neglect.
  • Promote citywide expertise and practitioner understanding of Mental Capacity, including Executive Capacity, in the context of self-neglect and alcohol dependency
  • Promote evidence based best practice guidance as identified within national research within our policies, procedures and workforce development (Also see 4.4) 

Our expectations of all partnerships, organisations and services in Leeds

A.   Work with and alongside people who self-neglect

Ensure your practitioners have the skills, training and understanding to work with people who self-neglect, and with consideration of their unique lived experiences.  Important elements of this include understanding of:

  • LSAB Multi-agency policy, procedures and guidance
  • Mental capacity (including executive capacity)
  • Trauma informed approaches
  • Professional curiosity
  • Strength-based approaches
  • Alcohol dependency
  • Home fire risk awareness

B.   Provide supervision and reflective practice opportunities

 Working with people who self-neglect can be challenging, ensure your practitioners have the practical and emotional support needed, as well as opportunities to reflect on and develop their practice.


4.2  Prevention:  Always work to reduce the risk of serious self-neglect

 Our Leeds citizen-led statement:

'I need to know how to seek help for myself and people I know'


Our commitments as a Board:

A.        To raise awareness of self-neglect in Leeds

 Develop generic resources for members of the public and practitioners, that can be used across the partnership

B.        To establishing self-help networks

Explore and develop self-help approaches for people who save excessively.

C.        To promote early intervention approaches
Develop and promote early intervention guidance regarding the refusal of services essential to someone's health and wellbeing. 

D.        To promote home fire risk awareness

 Identify fire safety awareness guidance/resources/risk assessments for use in Leeds, and ensure these are available across the partnership.


Our expectations of all partnerships, organisations and services in Leeds

A.        To raise awareness of self-neglect in Leeds

To raise awareness of self-neglect within your partnerships, organisation and services; and develop resources where needed to support your practitioners to identify and respond to self-neglect.

B.        To promote early intervention approaches

Provide your staff and volunteers with guidance as to the actions they need to consider when support services essential to someone's health and wellbeing are being declined.

C.         To promote home fire risk awareness approaches and resources across the partnership

Ensure your staff and volunteers have the skills, knowledge and confidence to identify and respond to home fire risks. Ensure your assessment processes enable practitioners to identify and respond to concerns.


4.3  Partnership:  Always bring partners together to support those  who self-neglect

Our Leeds practitioner-led statement:

"Silo working is no good for the patient…"

"Partnership working is when things go well"


Our commitments as a Board:

A.        Develop citywide approaches to self-neglect

Engage with key partnerships, forums and stakeholders to gain citywide awareness and support for this Strategy

B.        Work together in partnership for those who self-neglect

Work with an independent partner and key sector stakeholders to explore how to develop best practice in multi-agency working within Leeds.


Our expectations of all partnerships, organisations and services in Leeds

A.        Develop citywide approaches to self-neglect

Promote awareness of this strategy within your organisation and networks; and consider what your organisation can do to promote positive outcomes for people who self-neglect.

B.         To review related citywide and organisational strategies to ensure that self-neglect is recognised and responded to

Organisations and partnerships are requested to review related strategies to ensure self-neglect is appropriately included and responded to. This will help ensure the system in Leeds in its widest sense works together to identify and respond to risks.

C.        Work together in partnership for those who self-neglect

Ensure multi-agency partnership approaches take place within your organisation when working with someone who self-neglects. Work positively to engage with other partners. Be the first to act, be the organisation that bring others together.

D.        Access to services and resources

Each organisation needs to be assure itself that its staff and volunteers know how to access services needed to support people who self-neglect

E.        Ensure services and contractors commissioned by your organisation understand their role and responsibilities in relation to adults who self-neglect


4.4   Practice: Always developing and supporting best practice for Leeds

Our Leeds practitioner-led statement:

 "Maintain hope for change"

 Our commitments as a Board:

A.         Policies, procedures and guidance

Develop and promote multi-agency policies, procedures and guidance that support best practice in self-neglect, including:

  • LSAB Self-neglect policy
  • LSAB Information Sharing Policy
  • Professional curiosity guidance          
  • Think Family, Work Family approaches   
  • Always Care principles  

B.        Identify a self-neglect champion to lead on the development of best practice

C.        Exceptional Risk Forum

Provide a forum for multi-agency escalation of concerns in circumstances of exceptional risk

D.        Practice Development Guides

Develop checklists for organisations that outline areas for consideration, in ensuring best practice is delivered by their service in relation to self-neglect.

E.        Learn from practice

  1. Establish a multi-agency audit processes to evaluate and feedback on practice
  2. Undertake an appreciative enquiry event to inform best practice
  3. Disseminate the learning to inform future practice

Our expectations of all partnerships, organisations and services in Leeds

A.        Policies, procedures and guidance

Ensure all LSAB Self-neglect policies and procedures are adopted and embedded into practice, inclusive of:

  • LSAB Self-neglect policy
  • LSAB Information Sharing Policy
  • Professional curiosity guidance          
  • Think Family, Work Family approaches   
  • Always Care principles  

B.        Exceptional Risk Forum

Ensure relevant managers are aware of the Exceptional Risk Forum and know how and when to make a referral.

C.        Service provision

  • Provide practitioners with the time needed to work with people who self-neglect and to commit to multi-agency approaches
  • Adopt flexible approaches to working with people self-neglect, recognising their reasons for finding it difficult to accept support.

D.        Assure yourself of good practice

Don't assume; know that your organisation is working in the best ways to support people who self-neglect. Ask questions and take steps to assure yourself of practice within your organisation.


[1] Adapted presentation of Emerita Professor Suzy Braye (May, 2019)