Case Reviews 2016

December 2016 – Harry

Murder of a 22-year-old male. There was concern that partner agencies could have worked more effectively to protect Harry.

Background:  Harry was 22 years old when he was murdered. He had a moderate learning disability, autistic traits, and an anxiety disorder. Harry lived with his parents until 2013 when he began living independently with support provided in relation to personal care and managing his flat and finances. In the months prior to his death, Harry had been in an on/off intimate relationship with Karen. Karen was also in an intimate relationship with John. Karen and John have both since been convicted of Harry’s murder. Professionals from a range of agencies became aware of incidents and threats arising from the relationship between Harry, Karen and John.

Learning Points: It is surprising that he was known primarily to universal services until he was about to embark on his adult life; there are questions over whether Harry had sufficient mental capacity to take decisions to protect himself; staff made assumption of capacity; the services of an advocate were not considered; despite being assessed as lacking capacity in financial matters in 2013, the plan in relation to this still had not been actioned by the time of his death in 2015; awareness of the vulnerability of people with learning disabilities did not appear to be appreciated by the Independent Domestic Violence Advisor Service; The police officer who dealt with text messages threatening to kill Harry considered that Harry would not be a good witness as he was easily led and this appeared to be a factor in the officer’s decision to deal with the case informally.

Recommendations: Report is shared with local SABs and SCBs to make use of learning; joint task and finish groups created; professional practice in respect of safeguarding adults and tackling domestic abuse is integrated; review of professional’s knowledge and application of the Mental Capacity Act; case closure should be accompanied by an appropriate level of risk assessment; resources including “easy read” materials to increase awareness of safe use of social media for people with learning disabilities; police to review their safeguarding adults policies and practice; police to be fully compliant with the requirements of the Care Act 2014; understanding and mitigating risk should be a key focus of learning and training; develop a multi-agency procedure to resolve professional disagreements; SAB to write to the Department of Health to recommend considering making arrangements for a national repository for SAR reports in order that learning is more readily accessible.

Keywords: Mental Capacity Act, Domestic violence, Domestic homicide, Financial abuse, Multi-agency, Murder

Link to full report

December 2016 – Family HJ

Neglect and emotional abuse was evident in Family HJ over a period of years

Background: There were a number of children in the family, two of which have learning disabilities. The children share the same mother, but not all of them have the same father. It is suggested that both parents under review have [learning disabilities]. The children and parents are from a minority community. The family speaks both English and a second language. There had been involvement with the children beyond the universal services for a number of years, and there were concerns particularly about the neglect and possible physical abuse of a number of the younger children. The extent of the neglect has led to the health and development of a number of the children being compromised, which is likely to have a lasting impact.

Learning Points: Professionals need to understand and consider the complexities presented by culture, personality, neglect and disability when working with families; all professionals undertaking assessments of children with disabilities need to distinguish between features which are or are not part of a child’s disability, in order to identify signs of neglect; specific medical advice should be sought to clarify if concerns (such as bruising or developmental delay) are part of a child’s underlying condition; consistency is required to ensure that when children with disabilities are assessed their particular needs and limitations but also their increased vulnerability is taken into consideration; professionals need to be encouraged to state ‘I am struggling to engage’; when parents are oppositional it is sometimes difficult for professionals to see the children and to gain their views.

Recommendations: All agencies should participate in training their workforce in culturally competent practice; operational services have an appropriate range of risk assessment tools to use when assessing children who may be at risk of significant harm and that these are being used effectively; SCB to ensure that there is an effective multi-agency childhood neglect strategy in place; the Director of Children’s Services provides the SCB with an addendum report that outlines the changes to the children with disabilities service since the time period of this review; the SCB to promote and seek assurance that Early Help and other safeguarding processes consider and reinforce the whole family approach.

Keywords:  Parents with learning disabilities, Children with learning disabilities, English as a second language, Cultural competence, Minority communities, Physical abuse, Neglect

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October 2016 – Alison

Alison died aged 50 due to complications from a fall. There were concerns that the fall was not initially picked up by staff.

Background: Alison had a learning disability, Down’s syndrome, and in the latter years of her life, she suffered from dementia. She had the mental capacity to make informed choices in relation to most aspects of her life, albeit she required support with more complex life-changing decisions. Alison lived in the family home with care staff provided by the local Housing Association. In the months prior to her death Alison required constant 1:1 support. Alison was admitted to hospital having experienced seizures. It was later discovered that Alison had experienced a fall, however, hospital staff were not informed of this by care staff at the time. After a period around 1 month being unwell in and out of hospital Alison’s condition deteriorated and was placed on a supportive care pathway until she died.

Learning Points: The standards of care staff record keeping was highly unsatisfactory during the key event; the Ambulance Rapid Responder recorded that Alison refused to be taken to hospital, however, Alison lacked the mental capacity to give, or refuse, informed consent; the transfer to hospital took 6 days to effect; the hospital report notes there may have been diagnostic overshadowing in Alison’s treatment, due to the presence of a learning disability; a Hospital Passport may have assisted in her treatment in hospital; Alison could have been provided with an Independent Advocate, who may have played a key positive role whilst in hospital.

Recommendations: The Hospital Trust should explore options for improving awareness and management of patients with communication or learning difficulties, e.g. having Learning Disability ‘champions’ within emergency care settings; the Trust needs to raise staff awareness of the Mental Capacity Act; the Housing Association needs to make their safeguarding and auditing procedures more robust; record keeping needs to be reviewed among Housing Association staff; ensure that adults with a learning disability or who lack mental capacity have access to an independent advocate when there is no one appropriate or available to act on their behalf; each GP practice to have an adult safeguarding policy and a lead GP for adult safeguarding; Paramedics and Technicians who attend emergency and other call-outs, should be fully trained in the Mental Capacity Act.

Keywords: Dementia, Mental Capacity Act, Hospital Passport, Supportive care pathway, Record keeping, Rapid responder, Independent advocate, Adult safeguarding policy, Diagnostic overshadowing.

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September 2016 – JB

JB died in the hospital at age 54 of a twisted bowel.

Background: JB is described as having ‘moderate’ and ‘severe’ learning difficulties by different accounts and lived in a shared home where she received 24-hour support. JB did not verbally communicate but developed her own pattern of communication, had a longstanding issue with constipation, was diagnosed with depression after the death of her parents, had feelings of anxiety when leaving the house, and was assessed as lacking capacity in relation to medical intervention. JB’s health was described as ‘good’ a few weeks before she died. In the days leading up to her death, JB was shouting out in pain and laxatives did not appear to help. Within three days, there were telephone contact with doctors on 3 occasions, 2 home visits by district nurses, 1 by paramedics, and 2 personal attendances by different General Practitioners. Upon admittance to hospital following five days without opening her bowels, JB was deteriorating rapidly, had low blood pressure, sepsis, required oxygen and fluids. She was assessed as too unwell for surgery. JB died that evening.

Learning Points: There was a concern that no one had assessed JB’s level of pain; JB’s refusal to get into the ambulance was discussed in the perspective of the possibility of a Mental Capacity Assessment – if this had happened and been in place, would this have helped to get JB to the hospital earlier in her best interests?; there was no PRN medication in the house in order to sedate JB to be examined; the home staff felt that they had not been listened to.

Recommendations: Improve Medical Record access; identify people with learning difficulties on record keeping systems; a register of people with learning difficulties should be available; audit for reasonable adjustments; share best practice across organisations; allocate a named healthcare co-ordinator; Mental Capacity Act training for GP’s in relation to obligations around ‘serious medical treatment’; mandatory Mental Capacity Act training for healthcare staff; make available out of hours advice on Mental Capacity Act; health professionals to understand importance of Health Passports and Health Action Plans; pain assessment protocols put in place; support staff should know they can request support from learning disability nursing team; there must be an emergency healthcare plan; carers must be empowered to advocate assertively; health professionals should know to listen closely to carers especially when the individual does not verbally communicate; the ‘postcode alert’ should be better understood; Local data should be collected on mortality rates; national comparison and analysis should be included in the Joint Strategic Needs Assessment.

Keywords: Mental Capacity Act, Best interests approach, Constipation, Laxatives, Support staff, Training 

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August 2016 – Anne

An 18 year old woman who died following an epileptic seizure during a period of transition to adult services.

Background: Anne was a young woman with learning disabilities for whom epileptic seizures were usually frequent and caused her fear and difficulties. She was a pupil at a special secondary school for children and young adults with mild to moderate learning disabilities and physical health needs. At the time of her death, Anne was a resident at a residential children’s home for young people with disabilities. Anne had an epileptic seizure that lasted 2 minutes and it took 15 minutes to recover. She was monitored by the night staff during the handover to day staff. Anne then went back to bed and went to sleep. When the morning staff went to check on her she was found unconscious in the bed. Anne was taken to Southend hospital and died shortly afterwards.

Learning Points: The later stages of the transition process for Anne was not well managed and there was delay with the essential task of assessing Anne for Continuing Healthcare; Anne’s care plan does not appear to have been updated once Anne left home; Anne’s GP knew Anne’s mother well, and saw her regularly but did not feel 'in the loop' despite his central role and overview of medication issues; there were some aspects in regards to Anne’s placement where discussion with family members about the range of options, discussion with other professionals about those options, and review of those options, could have taken place; there were differences of opinion between her school and care staff in regards to capacity assessments that may have caused disruptions to her care. 

Recommendations: The SAB and the Safeguarding Children Board could sponsor a joint piece of work to understand the different professional cultures around mental capacity and decision-making in services for children and for young adults, with a view to reducing some of the differences in practice that can have a direct and inconsistent impact on young adults with complex needs who are in transition between services; the SAB should hear back from commissioning colleagues about the impact of the Care Act on placement choice and development for young adults with complex needs; the SAB should seek updates on work to enable the sharing of NHS patient information between primary, secondary, specialist care and other health settings.

Keywords: Transition to adult services, Mental Capacity Act, Inter-agency communication, Epilepsy, Placement, Care plan, Continuing Healthcare, Lead healthcare professional, Communication with family, Capacity assessment

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July 2016 – Ms L

A fellow care home resident was violent towards Ms L in a care setting for adults with learning disabilities. 

Background: Ms L has learning disabilities and lives in a residential care setting. She was physically assaulted six times over a seven week period by fellow resident Mr A. During this period safeguarding procedures were instigated but they did not prevent further assaults on Ms L. Ms L and Mr A are both nonverbal and their communication is enabled by the use of Makaton. The care home manager has subsequently made the decision to move Mr A to a separate flat and no further incidents have occurred.

Learning Points: Professionals across the partnership are not using historical information to inform and influence their decision making for adults with learning disabilities who have challenging behaviour, treating each incident inpidually and overlooking accumulative risk; professionals are desensitised to aggressive behaviour which results in the minimisation of the impact of violent behaviour by and to people with learning disabilities and the potential safeguarding implications; police are not routinely invited to adult safeguarding strategy meetings or seen as part of the multi-agency safeguarding partnership due to other professionals viewing their role as being solely crime-investigation focused; professionals do not fully understand the role of statutory advocacy services in supporting adults at risk in key decisions affecting their well-being, with the result that adults at risk are left without their wishes and feelings known/articulated.

Recommendations: As part of any in-depth, thorough assessment, historical information is gathered and analysed, which is used to actively inform future planning; home managers must follow up with safeguarding authorities what the status of any safeguarding alert is and whether there is a need for further actions; an independent statutory advocate should be considered any time a safeguarding incident occurs; there should be a risk management plan for an immediate response to a safeguarding incident and a longer term strategy that identifies previous patterns of behaviour and notes the possibility that if this has happened in the past it may happen again in the future; the police should be embedded in a formal way in the safeguarding process, with their role understood by all partners, allowing them to intervene in a more constructive way.

Keywords: Physical harm, Mental Capacity Act, Independent advocate, Risk management, police, Challenging behaviour, Multi-agency working, Safeguarding

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July 2016 – Andrew Strazdins 

Mr Strazdins had dysphagia and died from choking. The review concluded that Mr S’s death could have been prevented.

Background: Mr Strazdins had severe learning disabilities and sometimes presented with behaviour that challenges. He was considered to lack mental capacity as defined under the Mental Capacity Act. He lived in supported living accommodation arranged by his Local Authority. He had close links with his family, and they were central to his daily life and emotional well-being. As a result of his dysphagia Mr Strazdins had eating and drinking guidelines in place to minimise the risk of his choking and/or aspirating. Mr Strazdins died due to choking on food during a car journey. He was attended by two of his support staff who failed to follow his drinking and eating guidelines. The support staff pleaded guilty to criminal charges brought under the Health and Safety at Work Act. 

Learning Points: Risk assessments and care plans should be dynamic documents that are reviewed and updated regularly, especially if a person’s needs or health changes; dysphagia is not sufficiently understood by many professionals in health and social care, nor is it in the public consciousness; multi-agency reviews for individuals are central for maintaining a focus on the individual and ensuring that those services are working together to deliver person-centred services; there are gaps in common understanding and language on care contracts; risks assessments and care plans should be integrated; staff are sometimes unclear about their roles and boundaries when supporting a person to visit their families and this can result in avoidance; the code of practice for Victims of Crime needs to be better understood by agencies to support family members.

Recommendations: Consideration should be given to appointing a named lead health professional for each person with a learning disability and complex health and care needs; it would be helpful if dysphagia was clearly identified on Social Care Assessments, separate from support needs in relation to food preparation and eating; people with dysphagia must have support from staff who have had training in dysphagia/safer swallowing and nutrition awareness; quality checks and supervision records should examine food diaries to ensure that they are compliant with individual’s eating and drinking guidelines; regular multi-agency reviews should be arranged by the Commissioning authority to support the delivery of person centred services; Commissioners and Providers should undertake further work to ensure that contracts are explicit and specific in the setting out what is expected from services that are supporting people with learning disabilities and complex health needs.

Keywords: Dysphagia, Multi-agency review, Mental capacity, Choking, Risk assessments, Multi-agency reviews, Care contracts, Victim of crime code, Named lead health professional, Social care assessments.

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April 2016 – Adult TT

The Care and Treatment of Adult TT whilst detained under the Mental Health Act

Background:  TT is a young man with a diagnosis of a learning disabilities and autistic spectrum disorder. TT was admitted to hospital under the Mental Health Act two years prior. Throughout a turbulent period described as a ‘crisis’, his placement became untenable, causing serious distress to him and his family. TT was placed in a new hospital unit, which was subject to Large Scale Investigation procedures. Neither the commissioner of his care nor his parents were informed of the ongoing investigation. During his placement there were reports of significant challenging behaviour resulting in lengthy periods of restraint. Accusations of assault were made by and against TT, involving the police. Very unusually, the diagnosis of TT’s learning disability and autism were removed due to a failure to respond to treatment. 

Learning Points: TT’s transition from Children’s Services to Adult’s services does not appear to have been well planned; TT’s long stay in the Treatment and Assessment Unit heightened his distress and challenging behaviours, leading to more restraint and less stimulation; the placement agency failed to inform the commissioner of care of the ongoing investigations in the placement nor effectively monitor the placement; there was unduly heavy reliance on restraint to manage TT’s presenting behaviour; the reasoning behind the removal of the diagnosis of learning disability and autism appears to go against normal procedure and practice. 

Recommendations: CCGs and SABs need to monitor out of area hospital placements; CCGs need a placement failure contingency plan for all out of area placements; the CQC should include an assessment of Provider arrangements for communicating and escalating concerns about hospital placements in their inspection regime; a Responsible Clinician should consider the impact of a change of diagnosis on the legal status of the patient in question and provide appropriate recording of this; ensure staff have the training and support to ensure that mental capacity considerations are an integral part of their professional practice; the CQC clarifies its position on contributing to Safeguarding Adults Reviews.

Keywords: Mental Health Act, Mental Capacity Act, Placement failure, Placement monitoring, Assessment and Treatment Unit, restraint, Challenging behaviour, Assault, diagnosis, Transition

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February 2016 – Ms C

Ms C is a young woman with learning disabilities thought to have been the victim of domestic violence and sexual exploitation.

Background: The key messages reflects the findings to emerge from a recent case review of a young woman with learning disabilities thought to have been the victim of domestic violence and sexual exploitation. A Practitioner Briefing Sheet has been produced by the SAB’s Learning & Improvement Subgroup, outlining the key themes and findings to emerge from the review.  

Learning Points: N/A – ‘Decision taken not to publish this report, as Ms C and children are all alive, being actively worked with and despite attempts at anonymity, detail within report would be too recognisable.’

Recommendations:  Doubts about understanding and communication should never be a reason not to report abuse; People with a learning disability can be particularly vulnerable to sexual abuse and assault; Recognise the importance of on-going sex education; Be alert to the signs of sexual abuse; Set up safe situations where the person has the chance to say “No” and learn appropriate non-compliance skills; Develop a good relationship with the adult at risk; Be alert to patterns of coercive and controlling behaviour; Be aware of refusal to report abuse because of fear; Understand how local safeguarding services and Multi-Agency Risk Assessment Conferences (MARACs) fit together; Speak up if you suspect domestic violence or abuse; Robust capacity assessments are critical in determining the approach to be taken; Professionals should understand what to do and where to go to get help; A chronology should be a useful tool in assessment and practice; Effective person-centred transition planning is essential to help young people and their families prepare for adulthood; Assessment and planning is based around the individual needs and outcomes that matter to that person. Multi-agency professionals should work together in a coordinated manner to achieve outcomes that matter to the individual; Awareness of the heightened risks from parents/carers who are themselves victims of abuse; Parenting capacity best assessed with the joint input of workers from adults and children’s services; Share information between agencies working with different members of the family unit; Be aware of the risk that parents’ needs, behaviours and presentation can move the focus away from the child.

Keywords: Sexual violence, Sexual abuse, Mental Capacity, Transition 

Read Practitioner Briefing Sheet

March 2016 – Mr A1

Mr A1 died aged 60. It was found that he had bowel obstruction and a best interests decision was made not to operate. Mr A1 died the following day. 

Background:  Mr A1 had severe learning disabilities and epilepsy. He had spent over 20 years in a long stay hospital and the following 20 years leading up to his death in a care home. Mr A1 became ill during the transition from this care home to another residential home. He was given an abdominal x-ray, blood tests and catheterised, before being discharged home. His condition deteriorated and later that week he was admitted to A & E. When Mr A1 was admitted to hospital, a best interests decision was made not to operate on his bowel, it was the final act in a series of events that started as early as 1992. This decision relied in part on his brother’s perception around the deterioration in A1’s quality of life since the loss of his sight.

Learning Points: A1 led an institutionalised life governed by changes in government policy and their local implementation, which focused on systems of care rather than individual people; the lack of a personalised approach to care meant that A1’s needs, wishes and preferences were not always ‘listened’ to; examples of poor communication between professionals and poor record keeping; there were incomplete annual reviews, confusion over the dates of major life events, the missing Learning Disabilities Passport and a lack of clarity in exchanges between professionals have all had a negative impact on A1.

Recommendations: Annual health checks are carried out in accordance with best practice and with reference to existing guidance GP practices to work closely with family members/ care staff and those who know the person best in respect of individuals with a learning disability; the responsibilities of care staff in managing the care of people with specific medical conditions to be made clear through learning and development opportunities and in policies and procedures/guidance; improve the practice of all professionals and care home staff in respect of the Mental Capacity Act; highlight the importance of the Learning Disability Passport for hospitals and care homes; review the role of the acute liaison service to ensure access to necessary expertise/advice outside of normal working hours; all organisations to pay particular attention to meticulous record keeping during periods of transition between care homes and services and the sharing of information between organisations during this critical period.

Keywords: Transition, Mental Capacity Act, Best interests, Epilepsy, Institutionalisation, inter-agency working, Personalisation, Record keeping

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January 2016 – PY 

A woman with complex needs who died from an epileptic seizure

Background:  PY had been adopted as a young child by parents who had several other adopted children and four children of their own. PY had been known to the learning disability services since 1999 and was cared for by her mother independently until 2011 when the mother’s health deteriorated, and additional care was provided in order for PY to remain at home. Her mother died in 2013 and PY continued to live at home with daily support from members of her family, and numerous care services. PY had a diagnosis of severe learning disability and numerous other conditions including cerebral palsy, spastic tetraplegia and epilepsy. She also displayed some low-level self-harming and challenging behaviour. Due to her complex needs, PY received a wide range of services from several agencies. PY suffered an epileptic seizure and died despite receiving CPR from her carer and paramedics. The coroner subsequently ordered a post mortem, the findings of which were inconclusive.

Learning Points: Services were sensitive to PY’s complex needs and were arranged to enable her to stay in her own home in accordance with her expressed wishes and her best interests; no professional was responsible for the overseeing the full range of services and ensuring that multi-agency plans are implemented and reviewed; providers of general medical services for people with learning disabilities need to ensure that colleagues in social care are made aware of any changes in treatment and medication; for people with learning disabilities who also have a diagnosis of epilepsy, the Epilepsy Management Plan should play an essential role in managing the condition, sharing information and providing a link with medication; it is essential that Epilepsy Management Plans for people with learning disabilities are informed and updated in accordance with changes in prescribed medication and shared with all relevant agencies; all service providers need to be aware of the particular needs of people with learning disabilities with regard to preparing them for, and assisting them with bereavement. 

Recommendations: The SAB should ensure that appropriate arrangements are in place across the partnership to ensure that a named professional undertakes the role of care coordinator with responsibility for the management and review of all elements of care for service users who have complex needs; reviews of services for people with complex needs should be amalgamated into a single multi-agency review to consider all aspects of their health and social care needs; a review protocol should be agreed across the partnership to ensure clarity as to attendance and the provision of reports to reviews of people with complex needs; the recording of seizures for by all agencies that provide services for people with epilepsy should be amalgamated into a single Seizure Diary which is appended to the Epilepsy Management Plan.

Keywords: Mental Capacity Act, Epilepsy, Bereavement, Complex needs, Multi-agency review, Capacity assessment, Weight management, Obesity, Communicating with relatives, Learning disabilities nurse, Health action plans, Annual health checks, Named healthcare coordinator.

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2016 Case Review Summaries | V1 April 2020

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