Case Reviews 2015
December 2015 – Ms B
A 46-year-old woman whose cause of death was recorded as (a) heart failure and (b) obesity and depression. A safeguarding alert was raised by Ms B’s care provider due to self-neglect concerns.
Background: Ms B had a mild learning disability, personality disorder, and epilepsy, which presented a complex set of needs to those caring for her. Ms B’s care and support in the last weeks of her life had involved a complex mix of physical, mental health, and care services. Her behaviour had changed significantly and different approaches to respond to this were attempted, but with limited success. Finally, her physical health required her admission to hospital. Her health was found to have deteriorated so substantially that little effective treatment was possible.
Learning Points: A lack of comprehensive communication about Ms B’s heart condition when she was discharged from hospital in August 2014 had a significant impact on her care over the following weeks; multiple agencies tended to ascribe physical symptoms to behavioural issues; the involvement of an advocate would have ensured that her voice was heard; greater involvement of learning disability liaison nurses may have improved communication during and after the hospital admission.
Recommendations: Care and support plans must be clear about how physical health problems are to be monitored and responded to and regularly updated to reflect changing needs; arrangements for communicating discharge information following a hospital admission for a person receiving care and support should be strengthened so that all the relevant parties are aware of the outcome of the assessment or treatment; care organisations assure themselves that their staff are as alert to physical health care changes and conditions as they are to the mental health or learning disability conditions; more effective use of learning disability liaison services across hospitals; an annual health check provided for all people with a learning disability.
Keywords: Communication of symptoms, Annual health check, Complex needs, Mental health, Learning disability nurse, Advocate, Mental Capacity Act, Multi-agency communication, Heart failure, Obesity, Depression
November 2015 – RC
The death of a 61-year-old man with dysphagia who died following a choking incident
Background: RC had moderate learning disabilities, dysphagia and bi-polar disorder. He lived in supported accommodation. The most significant risk to his daily living and safety was the risk of choking when eating food. This risk of choking was documented in numerous risk assessments and the Speech and Language Therapy Team had recommended he have a pureed diet. RC choked on scones taken from the fridge at 6:30 one morning, he was admitted to hospital soon after and died 4 days later following the withdrawal of life sustaining medical interventions.
Learning Points: There is no single recording system that brings together RC’s information – the current system of case recording in the local authority is difficult to follow and cross reference; this needs to draw together the various strands of activity that make up an individual’s life to provide not only a comprehensive assessment but also to consider the interaction of one element with another; the Mental Capacity Act was never fully considered for RC – there were assumptions about his capacity; there was an overall lack of consideration of RC’s needs within the context of risk; there is no record of the possible cumulative impact of medications.
Recommendations: The SAB should review approaches to reducing the risk of choking for people with learning disabilities; they should amend current systems to consider ease of use for analysis of casework information; there should be an integrated team for high risk individuals; consideration of risk should remain paramount with individuals who may be considered very vulnerable; Mental Capacity Act use should be reviewed; information should be made accessible for individuals and their families; all those considered high risk in relation to dysphagia should have their care reviewed and remain an ongoing priority; reviews should be carried out for all those subject to the Mental Capacity Act; ways in which a single care plan can be maintained and accessed by all should be explored; when a service is transferred to a different organisation, care plans should be transferred and understood by the new provider; services must ensure care is personalised; the risk assessment should set out a hierarchy of risks; the letting of new contracts should not be carried out in isolation from an individual’s care needs.
Keywords: Dysphagia, Choking, Joint working, Risk, Mental Capacity Act, Care plan
October 2015 – Amy
Amy was 52 when she died of health complications relating to faecal impactation. There was a lack of communication and leadership, which may have contributed to her death.
Background: Amy had learning disabilities, epilepsy, cerebral palsy, and bowel problems. On 6 April 2013 Amy was re-admitted to hospital with breathing problems having been discharged back to her residence earlier that day. A further safeguarding referral was made by the Community Learning Disability Nursing service which was concerned about discharge taking place without apparent full investigation or consideration of her health problems. Amy’s condition deteriorated and she died in hospital on 7 May 2013.
Learning Points: Poor communication between different agencies left staff at supported living accommodation without sufficient information of Amy’s health care needs; under-use of Health Action Plan, which should have been drawn up and reviewed by her GP, and a multi-disciplinary team should have contributed to this; multi-disciplinary review and action planning in general should have been triggered in response to multiple admissions into hospital; poor record keeping of her daily health and behaviour; lack of understanding and insufficient use of the Mental Capacity Act and Best Interests processes by all agencies.
Recommendations: All 18+ adults with learning disabilities and complex support needs have a named care co-ordinator and their health and social care needs jointly reviewed on at least an annual basis; care coordination is supported by record keeping and information sharing across professionals and services and people’s families or representatives are regularly consulted; CCGs commission a service that includes (i) the support of people with learning disabilities who have additional complex support needs, including health care needs and (ii) the provision of expert advice to generic services such as supported living, district nursing and primary care to address the disadvantaged health status of people with learning disabilities; greater training on Mental Capacity Act 2005; staff given training to support and monitor the bowel health of people with learning disabilities.
Keywords: Multi-agency communication, Multi-agency planning, Health action plan, Bowel care, Epilepsy, Mental Capacity Act, Record keeping, Challenging behaviour, Care co-ordinator.
October 2015 - Mr V
Mr V died during the night at the age of 72
Background: Mr V lived alone in a warden controlled flat, he had a history of schizophrenia, mild learning disabilities, and traits of autism. In the week leading up to Mr V’s death he had been diagnosed with an inguinal hernia and was eventually (3 days following diagnosis) persuaded to attend the Emergency Department. Mr V refused treatment and was subsequently assessed as lacking capacity to make a decision in relation to his treatment. He was transferred to the inpatient ward. Mr V refused treatment again and wished to be discharged. He was discharged that day. An agency carer visited his home that afternoon during which time Mr V declined food, drink, or personal care. Mr V died sometime following this visit and was found lying on his bedroom floor in a pool of vomit the next morning. The death certificate gave the cause of death as ‘acute peritonitis’ and ‘small bowel infarction’.
Learning Points: It may have been helpful for the various health professionals who saw Mr V in hospital the day prior to his death to have liaised with a specialist learning disabilities nurse; it might have been helpful to medical staff to have a quick and easy way of recording an assessment of mental capacity; it is still not clear on what basis Mr V was deemed to have capacity to decide about his own treatment the day before he died; it remains unclear what the prognosis was for Mr V when he was discharged on the afternoon of 10th December – it would have been helpful if the people who knew him best had been involved in the discharge plan; a referral to the hospital social work department could have been considered as part of the discharge plan, as they could have liaised with his agency carers, and/or with his GP.
Recommendations: If a GP has made a decision that a significant deterioration in a patient’s condition would necessitate admission to hospital via 999 ambulance then the GP’s notes must be very explicit in stating this; it would be helpful if the Ambulance Service were able to link 111 and 999 calls; training in relation to the application of the Mental Capacity Act.
Keywords: Mental Capacity Act, Acute peritonitis, Small bowel infarction, Learning disability nurse
October 2015 – Angela, Barry, Claire
A vulnerable, at risk family and a lack of adherence to the Mental Capacity Act
Background: Angela, her brother Barry, and their mother Claire are three vulnerable people. Barry has a learning disability, and Angela and Barry have both been assessed as having significant problems with communication. Angela and Claire provided informal care for Barry and for each other. Angela has diabetes and needs daily insulin injections. In March 2014 a case conference was called because Angela was refusing insulin injections and her life was in danger. It was agreed that Angela lacked capacity to make a decision on consent to medical treatment. The following day she was admitted to the emergency department in accordance with a Best Interests Decision, and her condition was stabilised. Consequently, a review of local agency involvement with the family showed a history of health and welfare concerns that left them subject to self-neglect and potentially life-threatening risks.
Learning Points: Earlier consideration of the MCA was a missed opportunity for interventions to ensure that Angela would receive treatment; there was a collective failure on the part of health and social care professionals to understand their respective roles and responsibilities in carrying out MCA assessments and making best interests decisions for the whole family.
Recommendations: The Safeguarding Adults Board should improve multi-agency working with adults at risk who have complex needs; they should arrange a multi-agency audit of MCA training needs; there should be a review of the board’s Multi-agency Adult Safeguarding thresholds guidance in relation to adults at risk from self-neglect; they should arrange a review of the effectiveness of the management of safeguarding strategy meetings; they should undertake an audit to understand how effectively repeated ‘low level’ safeguarding concerns are identified and then acted upon; they should ensure that all agencies working with adults at risk from abuse, neglect or self-neglect have up-to-date information about Carer Support Systems available and should ask all agencies to review and report back on how staff are supported to professionally challenge decisions where it is believed such decisions are leaving adults at risk; local GP practices to be advised of key learning about the term “informed dissent”; professionals should avoid expressing opinions to the effect that an individual has/lacks ‘mental capacity’; when agencies are working with two or more vulnerable and high risk individuals from the same family, “Think Family/Whole Family” principles should be applied; when a vulnerable adult makes a serious allegation of abuse, this should be followed up.
Keywords: Multi-agency working, Self-neglect, Safeguarding, Mental Capacity Act, Diabetes.
October 2015 – Mr J
Death of a 33-year-old man in November 2012. Mr J died of health complications relating to faecal impactation.
Background: Mr J died when he was 33. He had Down’s Syndrome which resulted in a moderate learning disability. As an adult he was diagnosed with a mental illness and hypothyroidism. He had lifelong problems with constipation. He lived in a Supported Living scheme. On 14 November 2012 he was admitted to Hospital with a distended abdomen, having been admitted to the Learning Disability Assessment and Treatment Unit earlier that evening following concern about auditory hallucinations and confusion. Following a surgical procedure under anaesthetic to remove impacted faeces, Mr J’s condition deteriorated and he died in hospital 3 days later.
Learning Points: Insufficient use of best interest [procedure] or Mental Capacity Act framework in considering health and social care needs; in response to difficulties in communication, there should have been greater involvement of Mr J’s parents who had useful knowledge on how to communicate with Mr J when he was in pain; despite falling into a high risk category, Mr J’s annual health check was missed in 2011 with no follow up to rearrange; repeated references to Mr J’s distended stomach were made by health professionals, however, the seriousness of his condition was overlooked; lack of advice and guidance for supported living staff meant that Mr J’s chronic constipation and associated risks were not managed effectively; there was no effective external review or monitoring of Mr J’s final care placement; changes in Mr J’s behaviour and health should have prompted a multi-disciplinary meeting, however, inter-agency communication and planning was poor.
Recommendations: Practitioners ensure that the Mental Capacity Act is central to their working lives; in response to someone with a learning disability refusing beneficial interventions an assessment of capacity is undertaken; care coordination supported by record keeping and information sharing across professionals and services; people’s families or representatives are regularly consulted; staff given training to support and monitor the bowel health of people with learning disabilities; adults with learning disabilities and complex support needs have a named care co-ordinator and their health and social care needs are jointly reviewed on at least an annual basis; commissioned services which are providing care to people with complex support needs have explicit access arrangements with NHS providers such as Community Learning Disability Teams.
Keywords: Mental Capacity Act, Best Interests, Annual health check, Multi-agency communication, Multi-agency planning, Record keeping, Weight monitoring, Bowel care, Down’s Syndrome, Hypothyroidism, Mental illness, Care co-ordinator.
October 2015 - Child D
Death of an 11-week-old girl as the result of serious injuries consistent with violent shaking. Father was found guilty of Child D’s manslaughter.
Background: Mother experienced abuse in the family as a child and, as a result, was made the subject of a child protection plan in 2006. During the review process several professionals expressed concerns that mother might have a learning disability; none of the professionals who had been in contact with mother in the 5-years previously felt she had a learning disability. Father was seen by GP as a young adolescent in relation to problems with his temper, depressed mood, and verbal aggression. Following the incident, father admitted assaulting mother on two occasions, neither of which was reported to professionals prior to Child D's death. Following the death, mother reported that Child D has been bruised on three occasions when in the care of father. One of these bruises was seen by 4 health professionals prior to Child D’s death.
Learning Points: Potentially significant information about the mother’s childhood held in the GP records was not identified and shared with other health professionals; Child D’s mother did not harm her but she was less able to protect the baby because of her troubled background and her learning disabilities.
Recommendations: Member agencies commissioning or providing services to potential parents and parents of small children should take action to improve the safeguarding of children in relation to the vulnerability of babies, and the risks associated with even momentary shaking; current approaches to the assessment of learning disability as a factor that may influence parenting should be reviewed, considering how best to improve the availability of such assessments at targeted service level and child in need level; current arrangements for information sharing between agencies should be assessed to find ways of increasing the identification and sharing of relevant background social information about pregnant women and their partners.
Keywords: Parents with learning disabilities, Information sharing, Parental capacity, Physical abuse, Children
July 2015 – R
R was a vulnerable adult with a mild learning disability who sustained an injury as a result of self-neglect that could have resulted in the loss of a limb. R’s care and support needs were not met.
Background: R has a mild learning disability and well controlled epilepsy. R has been assessed as requiring care and support to enable him to live independently. Prior to his mother’s death in 2004 he had lived at home, cared for and supported by his parents. He had a history of declining services and had not had a health/medication review for approximately 30 years. When R inherited the family home, concerns about his capacity led the Court of Protection to appoint a Receiver and then a Deputy. In 2006, safeguarding concerns were raised regarding R’s ability to care for himself. The council undertook an assessment and R was regarded as having the capacity to make choices about his care. Between 2006 and 2009, the amount of support provided was gradually reduced by the care provider at R’s request. Following numerous safeguarding concerns raised and questions about the care being provided to R, it was found that he was not passing fluids, despite having drank 6-7 litres of water since the previous day and had not eaten for about 24 hours. R continued to refuse medical intervention, but his consent was overridden, and an ambulance called. In hospital he was found to have an increased heart rate, a temperature, and a wound on his lower right leg near his foot that was surrounded by redness and infested with maggots.
Learning Points: Care provider did not fulfil their contractual obligations and failed to provide the care required; they did not keep the local council properly informed about difficulties faced; they did not gain agreement of commissioners before making changes to the amount of care provided; they failed to safeguard R’s physical wellbeing; evidence suggests charges for hours not provided; the local council did not ensure that the care provided met R’s needs; there was no clear care plan in place; warning signs in relation to the care provider were missed; no account appears to have been taken of the cumulative pattern of concerns raised from other agencies; the response to difficulties in engaging with R by the GP practice, the mental health trust, and service provider was to withdraw/reduce services; R was regarded as being difficult and therefore would have to live with the consequences of this; unacceptable delays in following up concerns; occasions where concerns about risk were somehow lost in communication between agencies.
Recommendations: Care provider to ensure they have systems in place to ensure the quality of care they deliver, alert commissioners where difficulties in delivering care are experienced, ensure any changes to care commissioned are agreed in advance, and that they only charge for the service provided; The local authority should review the way in which it commissions providers and ensure there are effective systems to provide clear care plans, monitor services delivered, hold providers to account, check achievement of required outcomes and respond to quality concerns; All SAB partners review their risk policies in relation to non-engagement and self-neglect; SAB partners should review staff understanding regarding MCA; Local authority ensure clear policy in place regarding responsibilities in relation to individuals who are funding their own care but have eligible needs; CQC and local authority require effective communication systems; SAB partners and the SAB review the way inter-team and inter-agency differences of view are managed to ensure the best outcomes.
Keywords: Mental Capacity Act, Multi-agency, Self-funding, Inter-agency working, Epilepsy, Best Interests, Self-neglect, Process, Best Interest Decisions, Service refusal, Safeguarding
July 2015 – Mr LG
Death of a young male due to respiratory arrest, sleep apnoea, and obesity. There were concerns of adherence to the Mental Capacity Act and weight management.
Background: LG was a young person with severe learning disabilities, Down’s Syndrome, and aspects of autistic spectrum disorder. The management of LG’s weight was a long-term challenge for the family and practitioners. At the time of his death he was an inpatient at an acute hospital and had spent many years in residential care. The causes of his death are recorded as respiratory arrest, sleep apnoea, and obesity.
Learning Points: There was a lack of a consistent approach towards the requirements of the Mental Capacity Act by practitioners working with LG, specifically in regard to weight management and delay in telling him about the death of his father; there was a lack of co-ordinated, multi-agency, planning to manage LG’s weight; the Annual Health Check by the GP identified obesity as an issue, but no actions were agreed to address this.
Recommendations: The development of a multi-agency over-arching strategy to meet the needs of people with a learning disability and chronic (morbid) obesity; Mental Capacity Act Policy and Practice for staff to be reviewed to ascertain if any amendments are required to include the assessment of mental capacity in chronic, long term, situations; GP Annual Health Checks should have clear Health Action Plans regarding underlying health conditions.
Keywords: Mental Capacity Act, Obesity, Annual Health Check, Mlti-agency planning, Autistic Spectrum Disorder.
April 2015 - Child I
Death by drowning of a 20-month-old boy
Background: Child I and his two older siblings were subject to child protection plans under the category of neglect at the time of the incident. Parents both had learning disabilities and at times reacted with anger and hostility to professional interventions. Child I was found face down in the bath; mother reported she had left Child I in the bath, informing father she had done so, before leaving the house. Parents were subject to police investigation as alleged perpetrator and witness throughout the case review process.
Learning Points: Despite a widespread assumption by practitioners that both parents had learning [disabilities] and this impacted upon their capacity to care for their children, the extent of the parents’ learning disabilities, and how these difficulties impacted [were] not assessed, or fully understood; despite neither parent being able to read the parents were sent written conference reports and written agreements were used; at times, professional input and energy focused on the parents, to the exclusion of a focus on the children.
Recommendations: A clear and coordinated professional response to families where parents have learning [disabilities] is necessary for effective safeguarding work; where appropriate, additional and tailored support should be given to parents with learning disabilities such as referrals to Adult Learning Disability Services.
Keywords: Parents with learning disabilities, Information sharing, Parenting capacity, Physical abuse, Children
March 2015 – Miss N
Failure to provide appropriate care, treatment and nutritional support to woman with learning disabilities
Background: Miss N had learning disabilities and epilepsy. In autumn 2011 she had surgery for a twisted bowel. Miss N was briefly admitted to the hospital in early 2012 on three occasions with repeated vomiting. Each time she was treated for constipation and sent home. Mrs G said that the trust delayed diagnosing Miss N's bowel condition. Later in the month, Miss N was still vomiting and was admitted again. During the admission Miss N developed aspiration pneumonia and died.
Learning Points: Although Miss N's death was not avoidable, there were failings in her care and treatment. These included: delays in assessing and testing Miss N's gastroenterological symptoms; delays in giving nutrition by percutaneous endoscopic gastrostomy (PEG) and no consideration of alternative routes of nutrition; there were no tests to exclude bowel obstruction before the PEG was inserted; doctors failed to manage Miss N's epilepsy appropriately; doctors did not communicate adequately with her mother; mental capacity assessments did not take place and they should have done; doctors did not act with proper regard for disability discrimination law or Miss N's rights as a person with learning disabilities.
Recommendations: Improved consultation with families and carers; in response to someone with a learning disability refusing beneficial interventions an assessment of capacity is undertaken; ensure comprehensive learning disability awareness training for hospital staff is provided; consistent coverage from learning disability nurses; improved awareness and better use of the Mental Capacity Act.
Keywords: Mental Capacity Act, Best interests, Epilepsy, Bowel care, Communicating with relatives, Learning disabilities nurse
January 2015 – Mr P
Avoidable death of a man with learning disabilities after failings in care and treatment
Background: Mr P had a learning disability and lived in a nursing home. He had several medical problems and needed special bowel care. Mr P went into hospital with abdominal pains and vomiting. Tests showed Mr P had kidney impairment and a blocked bowel. Mr P's treatment plan included no food and drink, intravenous fluids, a tube to drain his stomach contents, a urinary catheter to measure his urine output and surgery only if he did not improve. After a period of improvement Mr P health deteriorated and died as a result of multiorgan failure caused by intestinal obstruction.
Learning Points: Doctors and nurses did not communicate adequately with Mr P's family about his needs and treatment, and therefore did not consider his rights as a disabled person; although Trust staff gave Mr P fluids, overall he lost a large amount of fluid - doctors should have made sure that he got enough fluids, and not just prescribed them; nurses overlooked information about Mr P's bowel care needs and did not carry out an adequate assessment; they failed to recognise Mr P's needs as a person with a learning disability and their assessment and care plans were inadequate.
Recommendations: Improved consultation with families and carers; use of learning disabilities liaison nurse; following-up on clinical instructions, particularly in relation to fluid intake; the creation of care plan that are suitable to the needs of people with disabilities.
Keywords: Mental Capacity Act, Care plans, Bowel care, Communicating with relatives, Learning disabilities nurse
2015 Case Review Summaries | V1 April 2020