Learning Disability and Self-Neglect Learning Briefing

​This page covers the key findings and learning from a Multi-Agency Case Audit on the topics Learning Disability and Self Neglect.

Key findings and learning from Multi-Agency Case Audit
Adult B - Mild Learning Disability & Self-Neglect

Multi-Agency Case Audit (MACA) & Sharing Learning 

This learning briefing summarises the key findings from the multi-agency case audit (MACA) which aims to identify good practice and areas for improvement. We kindly request that managers discuss this with their teams to ensure that the learning is used to enhance existing good practice and to make improvements where necessary.

The MACA process complements other activities outlined in the Northamptonshire Safeguarding Adults Board (NSAB) Quality Assurance Framework, such as single agency audits. Themes for MACA are agreed by NSAB’s Quality & Performance Sub Group in line with the NSAB Strategic Plan, emerging themes or at the discretion of the Safeguarding Adults Review (SAR) Sub Group where the criteria hasn’t been met, but there is learning.

Background to Adult B

The case involved a female, ‘Adult B’ who had mild learning disabilities and was living in supported living accommodation at the time of her death. Adult B lived a chaotic lifestyle, was a known alcoholic and drug user, and was believed to be the victim of exploitation. Sadly, Adult B died in Northampton General Hospital (NGH) on 26th May 2021.

The case was received as a Safeguarding Adults Review (SAR) referral from West Northamptonshire Council (WNC). The SAR Sub Group reviewed the case and information provided by agencies, where it was agreed that the criteria for a SAR was not met, but members felt there might be additional learning following a Section 42 enquiry undertaken by WNC, looking primarily at the arrangements of admissions to hospital in May 2021.

Northamptonshire Police noted over 100 occurrences for Adult B since 1994 (an occurrence is the recording of an incident by the police) stating she often had people at her address who would steal from her. When she fell out with them, she would contact the police to have them removed, but when they attempted to follow up for further information/evidence, she would not engage. Occurrences were cancelled due to her non-engagement.

Adult B was known to a number of agencies over many years due to her care needs, and had been supported by a care provider since October 2012 until her death. She was often very difficult to engage with. Eight agencies provided audits for the MACA for the period of review 1st May 2021 – to 26th May 2021.

When reviewing this learning, please bear in mind that it was a very difficult time for all agencies in May 2021 due to the pandemic, with many agencies being under extreme pressure with their own staff off sick with Covid-19.

Audit Findings

Northamptonshire Healthcare NHS Foundation Trust (NHFT) had contact with Adult B between 2013 and 2016 in relation to Community Mental Health Services. In January 2021, Op Alloy were contacted (Op Alloy is a service operated by Northamptonshire Police, where an officer and mental health nurse attends), and in April 2021, Adult B made contact with DHU Healthcare (out of hours service)  stating an individual was bullying her and taking her money, and she requested admission to Berrywood Hospital. A safeguarding referral was made at this time.

Adult B made further contact with DHU in April 2021 where she called from a phone box, and stated she was hungry, was not looking after herself, and was feeling suicidal and isolated. She stated issues with the same individual, but she ended the call abruptly. DHU tried to call her back, but there was no response. A safeguarding referral was not made, therefore this was a missed opportunity.

Adult B had personalised care in place from the GP practice and she was often seen without an appointment. On 18th May 2021, she attended her yearly health review and was advised to attend A&E (with her carer). She attended the same day and was admitted to Northampton General Hospital (NGH), but she self-discharged. The care provider reported her missing to the police.

Adult B was readmitted to NGH on 19th May 2021, after she was found collapsed in the street with a cannula still in place, but she absconded from the hospital again. The Emergency Department Team (EDT) informed the care provider and West Northamptonshire Council (WNC) Adult Social Care that she had absconded. EDT contacted the police to inform them that the Adult was missing, however, they advised they did not have the capacity to check on the adult and staff should call an ambulance as that would be more appropriate.  The care provider contacted the GP and asked them to undertake a mental capacity assessment and a best interest decision on their behalf, but the GP surgery informed they couldn’t help. There were no further entries on the WNC system until 26th May 2021 following a safeguarding referral from NGH.  

EMAS attended Adult B’s address on the 25th May 2021 following a call from the care provider as she was having difficulty breathing. EMAS transferred her back to NGH. EMAS submitted a safeguarding referral but WNC did not receive this until 28th May 2022. The referral noted that Adult B lived in supported living and received care support, and that she had been getting marijuana and heroin whilst in her accommodation. She was extremely unkempt, very dirty, had extremely long toenails coated in dirt, and bottom of her feet were black. dirty clothes, and no sheets/duvet on her bed. Adult B looked malnourished and had extremely low blood pressure. She had an open sore on her left hip which had no dressing on it and open to infection due to her lying on a dirty mattress. The referral also noted that her health had been deteriorating for weeks but the GP couldn’t do anything because she refused treatment, and she was assumed to have capacity. She had not been eating/drinking for days and had to be hospitalised with extremely low blood pressure. She looked malnourished and thin to the point of anorexia. The care provider staff had no paperwork or medical history. 

Adult B told crew she was not happy where she was living and wanted to move to a facility with more carers. The referral was shared with Adult Social Care and the patient’s GP.

Key Points - Learning and Missed Opportunities

The GP practice assumed Adult B had capacity but there was no evidence recorded as to why this wasn’t doubted. The practice had no knowledge of Adverse Childhood Experiences (ACES) or trauma, nor were they aware of her drug use.

NGH advised that there was no documentation regarding discussions that took place to dissuade Adult B from leaving the hospital on 18th May 2021. There was an opportunity for a safeguarding referral for self-neglect in relation to the first admission to NGH on 18th May 2021, but this didn’t happen. WNC were involved with Adult B at this time but NGH did not make them aware of her absconding from the hospital.

When WNC were advised of Adult B absconding from the hospital on the 19th May 2021, there was no attempt to liaise with health colleagues to ascertain her health condition.

When Adult B disclosed to the Out of Hours team that her landlord was possibly stealing from her, whilst a safeguarding referral was submitted, the matter was not raised with the police regarding the alleged exploitation.

WNC advised that there had been a number of previous safeguarding enquiries regarding allegations of sexual and financial abuse.  Safeguarding referrals and Police Public Protection Notices (PPNs) were screened in isolation, and an ARM (Adult Risk Management) process had not been considered.

Adult B’s views had not been sought throughout her interactions.  

Police intelligence showed that Adult B would threaten to kill herself if they didn’t respond. There was also a note on file to contact the care provider’s manager, and not to have direct contact with her. In hindsight, was this a buffer to engagement and was there something more serious to this request?

When Adult B absconded from hospital on 18th May 2021, the relevant form wasn’t put in place by NGH in relation to the Missing and Absconded Policy. Also, NGH could have considered an ARM when Adult B absconded if she had assumed capacity. (A review in respect of risk and ARM is being undertaken). Training has been identified and a learning event is being held.

In 2016, a cleaner raised concerns to the care provider about the shop opposite Adult B’s accommodation who were apparently providing drugs to her, and possibly to children, but she was scared to report it. It does not appear that a Safeguarding referral was made at this time.  

Despite the care provider bringing in a cleaner twice a day to help keep Adult B’s premises clean, her self-neglect was not picked up and reported to the local authority.

Assumptions were made around Adult B’s mental capacity. There was knowledge of Adult B, but this was not explored and a formal assessment should have been undertaken any organisation who was supporting her.  

Communication between agencies could have been better for example, ASC were not made aware of Adult B’s health and care needs until she had left the hospital on 19th May 2021. They advised the provider to contact the GP but there was no follow up from ASC with the practice to make sure that had happened. EMAS had witnessed Adult B’s long, dirty toenails, and whilst podiatrists had been arranged, the care provider advised that she had disengaged with them. The care provider should have communicated this to ASC.

NGH advised that there was no formal paperwork about Adult B’s next of kin (noted as the care provider).

Safeguarding referrals - Submitted

Numerous safeguarding referrals and PPNs were sent by the police to Northamptonshire County Council/West Northants Council. WNC recorded receiving twelve safeguarding referral between 2014 – 2021 and twenty Police PPNs between 2016 – 2019.  A further four safeguarding referrals were made on 20th April 2021 by DHU, 18th May 2021 by the GP, 25th May 2021 by EMAS, and on 26th May 2021 by NGH.

Safeguarding Referrals – Missed Opportunities

2016 (exact date unknown) by the Care Provider, 22nd April 2021 by DHU, and 18th May 2021 by NGH.

Good Practice

The GP felt that the surgery went beyond usual practice engagement to make care personal for Adult B. They recognised that she was unwell at the first point of contact, and made several follow up calls, with the GP reviewing her clinical notes within 24 hours of hospital admission.

The care provider said that communication from their staff was good, and they were able to engage with Adult B proactively and take her to the hospital (engaging with her wasn’t always the case).

Adult B was very close to her mother, and after her mother’s death she made the care provider aware that she had a brother, but had no contact with him. Following Adult B’s death, they made contact with her brother as she had some of her mother’s belongings, and they also needed to discuss the funeral arrangements with family members.

On 25th May 2021, NGH deemed Adult B not to have mental capacity to make decisions due to her deteriorating health, and a Deprivation of Liberty Safeguards (DoLS) was undertaken. Also, when she was readmitted to NGH, there were signs that she was going into cardiac arrest and appropriate treatment was given immediately.

When an individual goes missing from hospital, the matron should notify the police, and where appropriate, the care provider and ASC - this process was followed.

The care provider has since carried out training for staff on DoLS and Mental Capacity Act and Assessment.

Key Areas for Consideration and Missed Opportunities

Advocacy

There was no evidence that advocacy was discussed or offered to Adult B.

Both hospitals advised that they often struggle to get an advocate in a timely manner.

Adult Risk Management (ARM)

Partners should recognise the importance of calling an ARM at the earliest point of concern, and not relying on others to do so.

Exploitation

There was a lack of professional curiosity regarding Adult B’s claim that she was being exploited by one individual.

Making Safeguarding Personal

There was no evidence of Adult B’s wishes and feelings being asked or documented.

Mental Capacity Act & Assessment

A formal mental capacity assessment had been undertaken in 2015 regarding Adult B’s finances by the care provider - she was found to demonstrate capacity at that time, but despite her learning disability and drug use, no further assessments had been undertaken until her 2nd hospital admission on 25th May 2021.

Mental Capacity assessment has been identified as an ongoing issue in recent audits and Safeguarding Adult Reviews. Where ‘there was no reason to doubt mental capacity’, a rationale should be recorded as to why capacity wasn’t doubted. As Adult B had a learning disability and was known to take substances, this may have impacted her capacity to make specific decisions.

Learning – Single Agency

GP Practice

GP - ARM training is a priority for the practice and will be discussed at upcoming staff meetings.

Northampton General Hospital

There are a number of missing policies: Self-neglect, Missing and Absconded, Self-Discharge, and Non-engagement.  

Training will be put in place to address the gap regarding missing and absconded forms.

Northamptonshire Healthcare NHS Foundation Trust

The Trust should have requested that the local authority undertake a care assessment when Adult B made contact on 13th January 2021.  

Adults who present with needs for care and support should be referred for a ‘needs assessment’ under Section 9 of the Care Act.

Remind care providers that they can seek a Carers Assessment from the local authority.

Consider advocacy and refer where appropriate.

Raise safeguarding alerts and not rely on the actions of a partner agency.

Northamptonshire Accommodation and Social Care

Awareness of the ARM and multi-agency approach is needed, particularly for adults at risk of self-neglect. Also, training of the Mental Capacity Act (MCA) and assessment and safeguarding should be put in place.

West Northants Council Adult Social Care

Practitioners need to recognise when a mental capacity assessment for specific decisions is required, and not just accept or assume capacity.

Northamptonshire Police

When information stopped coming to the Police after a high number of occurrences, good practice would have suggested contacting local community officers to check that Adult B was OK. In hindsight, the police should have considered calling an ARM. Training on professional curiosity should be put in place.

Learning - All agencies

To understand agency responsibilities regarding mental capacity assessment (this has been highlighted previously).

The rationale for not undertaking a mental capacity assessment needs to be clear, and clarity and understanding documented by all agencies.

If a person believes a capacity assessment is needed, they should carry out the assessment, and not request from another agency such as the care provider did with the GP.

Business Office to update the MACA template regarding mental capacity and the rationale as to why there was no doubt about capacity and why an assessment was not undertaken (not sufficient to say capacity was assumed).

Recommendations

In view of previous MACA findings, a recommendation was agreed to provide case studies to the Business Office demonstrating best practice in relation to the above issues to support with partnership learning. Deadline 31st December 2022.

Agencies should consider a method for mandatory recording when rationale for mental capacity is assumed.

A detailed action log will be developed to include key points of learning. Progress is monitored via the NSAB Quality & Performance Sub Group, and feedback will be sought to ensure the learning has been cascaded and actions are progressing to completion in a timely manner.

Useful Links

Advocacy - Voiceability 

Mental Capacity Act 2005 – Code of Practice

NSAB Policies & Procedures - ARM Toolkit

Learning Disability and Self-Neglect Learning Briefing - Printable Version (PDF 196KB)