Self-Neglect is defined as a broad range of behaviour in which an individual is neglecting to care for their personal hygiene, health or surroundings. It can be a choice by the individual or it can be because they are unable to look after themselves. Either way it is often indicative of further safeguarding concerns.
As self-neglect is such a broad and complex safeguarding concern it can present itself in a wide variety of ways. Often signs of self-neglect only appear a long time into a period of neglect and some signs are more difficult to spot than others but professionals should be on the lookout for….
Poor personal hygiene Missed appointments Unsuitable Clothing
Unusual odours Forgetfulness
Messy presentation Dehydration
Hoarding Poor diet 
Build-up of waste in the home Unexplained Weight loss Dangerous living conditions
Infestations 
Non-functioning utilities Threatened eviction
Hoarding is one of the most common forms of self-neglect and of course occurs to various degrees. This resource from Avon Fire and Rescue helps professionals to identify levels of hoarding and suggests appropriate courses of action:
For specific guidance on hoarding see our specific hoarding guidance.
If, as a professional, you come across an individual who you believe to be self-neglecting the first thing you should do is assess if they are at immediate risk of serious harm or are putting others at risk. If so, contact the emergency services as soon as possible.
If the individual is not causing an immediate risk and is not at an immediate risk themselves, then you should work to engage the individual in the process of them getting better. Find out what their wants and needs are and explain your concerns to them. Establish the wider picture, start to build a chronology and an idea of the individual’s network. Refer to the Needs Assessment form here (currently under review).
If an individual has care and support needs that mean they are unable to protect themselves from self-neglect and they are at risk of, or already experiencing, self-neglect then they may meet the criteria for a Section 42 enquiry under The Care Act 2014. In these circumstances, you should refer the individual into Adult Social Care. You can do this by clicking on the link here: Report suspected abuse (bristol.gov.uk).
If, for whatever reason they do not meet the Adult Social Care threshold, then a non-statutory Multi-Agency Risk Management meeting (MARM) can be called. Any professional can request a MARM if they have concerns about an individual who is at risk from self-neglect. Guidance on how to arrange a MARM in Bristol can be found here. You can also contact mental health services or the person’s GP if you see fit.
If an adult has mental health issues which effect their executive functioning (see guidance on executive functioning here: The person seems to say one thing and to do another - Capacity guide) or they have fluctuating capacity (as defined here: The person’s capacity seems to fluctuate - Capacity guide ) then a Mental Capacity Assessment will be needed. This can be undertaken by anyone with the appropriate training. You can book on to one of our Mental Capacity Act training days here: https://bristolsafeguarding.org/training/kbsp-training/ . Alternatively, contact mental health services and request a mental health capacity assessment to be undertaken by a professional.
It can be challenging to convince a person who is self-neglecting to engage with the plans and services offered to them but it essential that professionals keep in mind that the person’s neglect is most likely the result of complex trauma or serious health problems. Do not close a case solely on the grounds of non-engagement. As professionals, you have a wealth of tools which can help you break down barriers when an individual is struggling to engage. See pages 12-14 of our Self-Neglect guidance for more detailed input. If a person has mental capacity, is at serious risk of danger, and is refusing to engage, after exhausting all possible routes to engagement, a professional should approach the High Court to gain appropriate legal authority to intervene. Maintaining professional curiosity is paramount when working to engage individuals and it is important to remember that there could be a wealth of different situations which present as non-engagement. Recent learning from a Safeguarding Adults Review brought attention to a case where criminal exploitation was causing self-neglect.
If an individual is at risk of losing their home as a result of their self-neglect then you should complete a Homelessness Prevention Team referral here: Homelessness prevention referral from agencies (bristol.gov.uk).
As stated above, often the causes of self-neglect are complex, unclear and multi-faceted. They commonly include:
Self-neglect can also be linked to Obsessive Compulsive Disorder or Diogenes Syndrome.
Adults who self-neglect are likely vulnerable to other forms of abuse as well as exploitation, domestic and sexual abuse, victimisation, bullying and radicalisation. Self-neglect can also be caused by any one of these.
The Care Act 2014 contains the legal definition of self-neglect and formally recognises it as a form of abuse. It places an emphasis on the importance of early intervention and prevention as well as stating that there is a duty for all agencies to work together to help individuals experiencing self-neglect.
A statutory enquiry will be triggered by Section 42 of The Care Act if an individual meets all three of the key requirements:
Although many individuals experiencing self-neglect do not meet the threshold for a Section 42 enquiry, the local authorities have the power to undertake a non-statutory safeguarding enquiry if they see fit.
The Mental Capacity Act 2005 should also be taken into consideration when helping a person with self-neglect. There is presumption of capacity but if there are concerns around an individual’s capacity then a Mental Capacity Act Complaint Capacity Assessment should be completed. This can be completed by anyone with the appropriate training. Our training on this can be found here: https://bristolsafeguarding.org/training/kbsp-training/ . In an urgent situation, an emergency application can be made to the Court of Protection.
Mental capacity is decision and time specific and so often peoples’ capacity fluctuates. If a person is deemed to have fluctuating capacity, professionals should wait until an individual has capacity where possible or, in emergency situations they can proceed with the person’s best interests in mind.
For more extensive guidance on self-neglect see our guidance here.
Below is a story illustrating the complex nature of self-neglect and how crucial a person-centred approach is when dealing with a case.
This is Elsie’s Story:
The referral was pretty bog standard these days. The neighbours didn’t get Elsie’s permission for any of her details to be referred to social services. In truth it had never crossed their minds they’d be asked for this. When pushed by the call centre about the issue of consent they said that they didn’t think they needed her consent and that this was a matter that ‘the council must take seriously for everyone’s sake’.
And then behind the thinly veiled threat to act the neighbour stumbled upon four little words. Magic words. Words that suddenly change the meaning of everything and words that seemingly come with their own legislation, procedures, judges and juries. ‘It’s a safeguarding issue’.
And boom, there it is. Elsie, aged 87, never known to the council, never having failed to pay for council services or any other tax that propped up with welfare state that she didn’t really partake in, was known. Consent overridden. Case opened. Within moments Elsie had an electronic file. Elsie had a reference number. And Elsie would receive an automated letter thanking her for contacting the council and she would receive a call within the next seven days. All done within five short minutes from the start of the phone conversation.
Within 10 minutes Elsie was on waiting list of other reference numbers waiting to be allocated to a social worker and sat on the computer screen of the manager. Whether Elsie used services or not, from that moment on to the day of her death, nothing was clearer – Elsie was a service user and there was a record to prove it. There was, as far as everyone was concerned, someone to safeguard.
The social workers went in twos to the address. No-one was quite sure why. The referral mentioned that Elsie had got cats but there wasn’t any belief that the cats were dangerous. Perhaps the second social worker was there because social workers love cats. The referral said the house was ‘dirty’, ‘things everywhere’, ‘cluttered’, ‘soiled pads in the garden’ and Elsie, although not seen for some weeks, was wholeheartedly felt by the neighbours to be dirty herself. ‘She’s self-neglecting’.
Having knocked at the door and getting no response the social workers pushed slightly at it and the door opened. A cat ran out and then back in again. No sign of Elsie in the hallway. The social workers called her name, walking gingerly through the hallway, past a sideboard with some framed pictures of a moustachioed man with the ‘Geraldo, King of Swing’ emblazoned on them. Calling out her name and holding out their ID badges the social workers continued inward.
Elsie was in the kitchen. She smiled when she saw the social workers and beckoned them in still further. The social workers introduced themselves and whilst doing so Elsie kept on smiling before raising her hand as if to stop the second social worker saying their name. Elsie bent forward and placed her right ear up against what looked like a radiogram from footage used to show listening to the broadcasts of Prime Minster Churchill telling them they wouldn’t surrender.
Almost trance like Elsie’s smile remained fixed as she listened to the radio. Elsie probably listened to the radio for a full three minutes, to the social workers, observing the cats, the newspapers (one from May 1991 with a picture of Paul Gascoigne on) and moving their feet on the sticky floor tiles, the three minutes felt like a lifetime.
When Elsie moved away from the radio she asked the social workers ‘who are you again, love?’. The social workers explained who they were and said that they were there to see if ‘she was alright, you know, see how things are’. Elsie said she was fine and asked if the neighbour had asked for them to visit. ‘She’s lovely, like that. Looks out for me’.
Elsie explained that she had lived in the house all her life. Her parents, who she said ‘died recently, in 1971 and 1975’ had left the house to her. The social workers listened. They wanted to be respectful, they had questions of course (and they had lots of boxes to tick) and had already decided that things ‘weren’t right’ but they listened nevertheless.
Half way through talking Elsie’s eyes suddenly lit up. ‘John!’ she said. Within moments Elsie was back to the other side of the kitchen, head propped up against the radio, same expression on her face, which now to the social workers seemed almost rapturous. This time a longer a wait. Five minutes. Elsie broke her concentration just once, to beckon the social workers to sit down. Neither did. Elsie didn’t notice or care.
Elsie said that John worked for the radio. He was in his late forties and his job was a ‘broadcaster’ and that each day John ‘either announced the news or introduced big bands… sometimes both’. Elsie said that John was based in London and he still lived there. She said John sometimes slept in the radio station and sometimes broadcast during the night, but not usually.
The social workers continued to listen but really wanted to talk about the cats and Elsie’s ‘daily routine and keeping clean’. More in an effort to wrap the conversation up about John and move on to the matters at hand, the self-neglect, one of the social workers asked a question. ‘John sounds lovely. Is he someone you have actually met and know’?
And with that the tone of the conversation changed. Elsie explained that John had spoken to her on the radio for over 60 years. He was her man friend and he was engaged to marry her. Her betrothed. John had promised Elsie that one day he would drive up from London in a white Bentley car and marry her. Their plan was to live in London and take Elsie away from all this, including the cats. Elsie said the social workers could have the cats if they wanted them.
On walking to the door with the social workers Elsie thanked them for coming but they had to go now as John liked to ‘talk to her alone’. Elsie smiled as she shut the door behind them. The last thing the social workers heard Elsie say as the door closed was that John was her man and ‘was not for sharing, goodbye’.
The social workers weren’t inexperienced. One had just become an approved mental health professional and the other had worked with older people for years. But as they walked to their cars and drove back to the office the silence between them spoke more than any words of completed boxes on the safeguarding form. ‘What was all that about?’
Safeguarding referrals can be complex. The social workers knew that. They also knew that to ‘help’ Elsie they had to get to know her, build up trust etc. So the visits continued throughout the next week. On each occasion Elsie spoke to the social workers but continued to ignore any questions about her health, her wellbeing, her cats and the state of her house.
Most questions were met with ‘I know love. John’ll see to it’. All conversations were interspersed with long periods of Elsie listening to the radio and smiling with occasional, knowing nods and some ‘ah’s’ aimed at the social workers as if ‘John’ was further confirming plans that would need to be relayed to the social workers.
For the most part the social workers just heard the hiss of the untuned radio. For them there was no voice, no programme and without doubt there was no John. However what bothered the social workers more than this was that there was no progress. No getting Elsie to see what state she was in. No getting Elsie to consent to sorting the house. No getting Elsie to realise the safeguarding issue. The self-neglect. The abuse.
Safeguarding doesn’t allow for stalemate or for someone to continue to be abused. It identifies the abuse and through a list of ‘outcomes’ it makes the social workers do something. For the social workers things needed fixing for Elsie. She had a choice. Either Elsie worked with them to ‘improve the situation’ or they would ‘refer to other agencies’.
The case notes were clear. Elsie wouldn’t engage. She lacked capacity to make the decision. It was all in her best interests. The risks were unmanageable. The hoarding was a fire risk. The cats were underfed and the RSPCA would be cross. She needed safeguarding. If only she could see it! She was a problem. The problem needed fixing.
The social workers didn’t seek Elsie’s consent to refer to other agencies. In Elsie’s case the ‘other agencies’ was the mental health team. Elsie was visited by a Community Psychiatric Nurse, who within hours visited again but this time with the psychiatrist. The social workers received a call ‘How has this gone on so long? and ‘she’s in a terrible way, totally delusional, paranoid ideation’ and is ‘refusing all treatment because of this bloody John thing’.
The next call was to the AMHP. Pink papers in the bag, the Mental Health Act Assessment was to take place that evening.
The ambulance couldn’t stay and eventually the police were called. 87-year-old Elsie was escorted out of her property by two young police officers. One of the police officers had to switch the radio off during ‘the incident’ in the house. He at least had the foresight to give the radio to Elsie and reassured her that she ‘could hold it’ in the back of the car. It was the only bit of humanity Elsie ever witnessed either that evening or throughout her entire dealings with the ‘support’ agencies. Section 2 completed. Safeguarding outcome achieved. No more self-neglect. Someone had been safeguarded.
The first thing Elsie did on the ward was to find a plug for the radio. John was there. Reassuring her and helping her to stop crying. And that’s how things stayed for a number of weeks. The medication was taken, Elsie complied. The nurses moved on to the next person, Elsie listened to John. There was no more worry about Elsie from the neighbours, the problem had been fixed. No more self neglect, no more self to neglect. Elsie’s care plan said ‘needs all cares’. And that’s what she had. All cares attended to and a continued love affair with John.
The discharge planning never once considered home. Home was where the ‘multi-disciplinary team’ had felt that the bad thing happened. Home was where the cats had had to be removed and where the social workers had found Elsie’s love letters to John, which had ensured merriment on the ward due to the details that she went into about her feelings for him. The self-neglect would re-start at home and why risk things? Elsie was happy enough. Everything was fixed, apart from the John thing.
The care home never fully read the care plan about Elsie and the new social worker had not really written much up about John and what had happened at home. The radio didn’t go with Elsie to the care home. Elsie noticed this on her first day at the home. However instead of asking for the radio Elsie screamed for 8 hours. In the end she was given medication. The care home didn’t call the hospital or speak to the psychiatrist about how distressed Elsie was. They made one phone call that day, which was to the social worker requesting more funding ‘due to the screaming’ and the impact this was having on other patients and staff.
Over the next three months Elsie moved into two different care homes and was returned to hospital following a fall. The radio was never switched back on.
Elsie died in a care home. It was four months, five days and six hours after the phone call from the neighbour.
Lord Justice Munby stated ‘what is the point in making someone safe if it merely makes them miserable’. In ensuring Elsie was miserable, we were unfit to even ensure her safety. John did exist for Elsie and we never saw that. John was the risk management plan. John stopped Elsie self-neglecting, not the other way around.
Elsie was the expert in her own situation and had an 87 year start on the rest of us who tried to study her and fix her within weeks. John was her flickering light of hope which we extinguished in the name of safeguarding people from themselves. I hope she saw John again somehow.
The story was written by Rob Mitchell and was taken from here: http://www.communitycare.co.uk/2016/09/28/self-neglect-someone-safeguard-elsies-story/
