James Wheeler

Coroner's concerns

AI summary

There is a critical lack of national guidance for monitoring refractory epilepsy, particularly for assistive technology. Additionally, a local authority failed to consistently conduct legally required annual Care Act reviews due to resource constraints.

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1. To Sir Andrew Dillon, Chief Executive, National Institute of Health and Care Excellence court heard that there is currently an absence of authoritative guidance in the United Kingdom as to the monitoring of people with refractory epilepsy, both in hospital and community care settings: particular feature of this case was the absence of guidance as to the availability and use of assistive technology in monitoring individuals thought to be at high risk a5 a result of seizures
2. To Ms Pam Smith, Chief Executive, Stockport Metropolitan Borough Council The court heard evidence that, notwithstanding the Local Authority' s statutory obligations under the Care Act 2014 in this regard, Mr Wheeler (and indeed many other eligible service users) did not receive annual Care Act Reviews as required by law. Whilst the court heard evidence about the process of transformation of adult social care underway within the Local Authority; it is a matter of concern that the default position still appears to be that an obligatory Care Act Review will not take place, unless some exceptional circumstance is identified about the case_-
3. To Rt: Hon: Matt Hancock; Secretary of State for Health and Social Care The court heard evidence that; whilst parliament had conferred on Local Authorities a statutory duty to undertake annual reviews pursuant to the Care Act 2014, insufficient resources had been made available to enable councils to discharge this duty alongside existing statutory obligations_

Responses

3 respondents

National Institute for Health and Care Excellence Other

11 Feb 2020 PDF

Action Planned

NICE's guideline on epilepsies (CG137) is being updated, with a draft consultation expected in November 2020 and publication planned for June 2021. The update will consider the effectiveness of new technologies for detecting seizures and interventions for reducing seizure-related mortality. (AI summary)

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Dear Mr Morris , Thank you for your Ietter of 3 January 2020, regarding the death of Mr James Thomas Wheeler. was very sorry t0 read of Mr Wheeler's death: have considered the circumstances surrounding Mr Wheeler's death, and your concern that there is no national guidance on how to monitor people with refractory epilepsy (both in hospital and community care settings), including the use of assistive technology for those thought to be at high risk of seizures: We have published guidance on the diagnosis and management of epilepsies (CG137): This guideline includes specific recommendations relating to sudden unexpected death in epilepsy (SUDEP): Recommendation 1.3.12 says the risk of SUDEP can be minimised by optimising seizure control and being aware of the potential consequences of nocturnal seizures: The guideline also includes specific recommendations relating to people with learning disabilities (section 1.16). Recommendations 1.16.3.7 and 1.16.3.8 discuss the higher risks of mortality in this group, and the need for assessment: The recommendations state: "1.16.3.7 Healthcare professionals should be aware of the higher risks of mortality for children, young people and adults with learning disabilities and epilepsy and discuss these with them, their families andlor carers- "1.16.3.8 All children, young people and adults with epilepsy and learning disabilities should have a risk assessment including: bathing and showering preparing food using electrical equipment managing prolonged or serial seizures the impact of epilepsy in social settings SUDEP the suitability of independent living, where the rights of the child, young person or adult are balanced with the role of the carer". NICE

nice@nice orguk CU

This guideline (CG137) is currently in the early stages of being updated. We expect lo consult on the updaled dralt guideline from in November 2020 and plan to publish the final updated guideline in June 2021 (these dates are subject (o change) As part of this update, the guideline committee will be considering (he available evidence for the following review questions: What is the effectiveness of new technologies (for example, night monitors, wearable devices and apps) in detecting seizures in people with epilepsy? What are the risk factors for epilepsy-related mortality, including SUDEP , and what is the magnitude of risk of the factors" What interventions are effective in reducing the risk of seizure relaled mortality, including SUDEP? Your concerns have been passed to the guideline committee to help inform their work

the Department of Health and Social Care Central Government

28 Apr 2020 PDF

Noted

The Department of Health and Social Care acknowledges concerns regarding annual reviews and highlights the Social Care Act 2014. They note that a LeDeR review is being conducted and that the CQC has inspected Cheddle Lodge, finding it compliant with regulations in October 2019. (AI summary)

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Dear Mr Morris

Local authorities should establish systems that allow the proportionate monitoring of both care and support plans to ensure that needs continue to be met. There are several different routes to reviewing care and support plans. These include:
• A planned review, the date for which is agreed with the individual during care and support, or support planning, or through general monitoring;
• An unplanned review, that results from a change in needs or circumstance that the local authority becomes aware of, e.g. a fall or hospital admission; and,
• A requested review, where the person with the care and support, or support plan, or their carer, family member, advocate or other interested party makes a request that a review is conducted. This may also be the result of a change in needs or circumstances. It is the expectation that local authorities should conduct a review of the plan at least once every 12 months, although a light touch review should be considered six to eight weeks after agreement and sign-off of the plan and personal budget, to ensure that the arrangements are accurate and there are no initial issues to be aware of. This light-touch review should also be considered after revision of an existing plan to ensure that the new plan is working as intended. Councils are accountable to their local populations and that includes accountability for meeting their statutory duties under the Care Act 2014. If an individual is unhappy with the care arranged by a local authority, they can make a complaint using the local authority complaints process. If they remain dissatisfied, they can seek assistance from the Local Government and Social Care Ombudsman. To support local authorities, we are providing councils with access to an additional £1.5billion for adults and children’s social care next year. This includes an additional £1billion of grant funding for adults and children’s social care, and a proposed 2 per cent precept4 that will enable councils to access a further £500million for adult social care. This £1.5billion is on top of maintaining the £2.5billion of existing social care grants and will support local authorities to meet rising demand and continue to stabilise the social care system. For Stockport, this means that the Council is set to receive an additional £4.8million from the new Social Care Grant and the Council could raise up to £3.6million of additional funding specifically for adult social care in 2020/21 following the introduction of the precept5. In addition, Stockport Council will receive £11.6million of funding through the maintenance of the existing Adult Social Care grants in 2020/21. Future funding for social care will be set out at the next spending review. 4 https://www.gov.uk/government/speeches/provisional-local-government-finance-settlement-2020-to-2021-statement 5 This projection includes a small proportion of base tax rate growth.

Reflecting on the wider aspects of your report, you may be aware that in 2015, the Government established the Learning Disabilities Mortality Review (LeDeR) Programme. The Programme systematically reviews the deaths of all people with a learning disability, aged four years and above, that are notified to it. The Programme enables a detailed picture to be built of key improvements that are needed both locally and at a national level, to reduce the inequality in life expectancy between people with a learning disability, and those without. I am advised by NHS England and NHS Improvement that a LeDeR review is currently being conducted into the circumstances of Mr Wheeler’s death. I am clear that the local NHS must reflect on the findings of the review and take necessary action to improve services locally for people with a learning disability. I have also asked officials to bring your report to the attention of the National Director for Learning Disabilities, , who is leading work nationally to improve services for people with learning disabilities and/or autism. Finally, I am advised that following notification of Mr Wheeler’s death, the Care Quality Commission (CQC) brought forward a planned comprehensive inspection of Cheddle Lodge, Stockport. The inspection looked at the safety of equipment and processes. The report of the inspection undertaken in March 2018 is available on the CQC website6. The CQC identified four breaches of Regulations and the facility was rated Requires Improvement overall. I am advised that Cheddle Lodge was re-inspected in October 2019 and the CQC found the facility to be compliant with the Regulations and received a rating of Good overall. I hope this response is helpful. Thank you for bringing these concerns to my attention. HELEN WHATELY 6 https://www.cqc.org.uk/location/1-113087594/reports

Stockport Metropolitan Borough Council Local Authority / Fire Service

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Action Planned

Stockport Council is creating a dedicated review team of six social workers and a team manager to address the backlog of annual reviews in the Learning Disabilities Service, with an option to increase staff numbers as required. (AI summary)

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Dear Mr Morris Re: The Regulation 28 Report submitted to Stockport Metropolitan Borough Council regarding James Thomas Wheeler Response to "The MATTER OF CONCERN", Paragraph 2 Stockport Council acknowledges that there has been a historic issue with regards to the timely undertaking of annual reviews in the Learning Disabilities Service. This is not an issue unique to Stockport Council alone as indeed many other local authorities are also challenged in this area, due to the present resources, service pressures and competing priorities: However, at present Stockport Council is in the process of addressing these matters. A business case has been presented and agreed, in order to fund and create a dedicated review team comprising initially of six social workers plus a team manager - including an option to increase staff numbers as required with a view to addressing the entire backlog of reviews throughout the financial year 2020/21. Furthermore, additional work will be undertaken with the intention of evaluating Stockport Council' s staffing resource and implementing a sustainable model for managing reviews from April 2021 onwards. trust that the above information provides you with the reassurance that Stockport Council are addressing the area of concern that you have raised in relation to paragraph 1 of the Regulation 28 Report: However; if you do require further details, please do not hesitate to contact me: 27th

Report sections

Investigation and inquest

On 12th February 2018, opened an inquest into the death of James Thomas Wheeler who died at Cheddle Lodge residential care home in Stockport on 22rd January 2018,aged 23 vears The investigation concluded at the end of the inquest which heard between 22nd November 2019. The inquest concluded with a narrative conclusion, to the effect that Mr Wheeler died as a consequence of a nocturnal epileptic seizure which occurred whilst he was unobserved and not actively monitored

Circumstances of the death

Mr Wheeler had a history of cerebral palsy and global developmental delay with severe learning disal His cerebral palsy was associated with the development of epilepsy: He had no traditional means of communication, was confined to a wheelchair and in later years fed with a Gastrostomy due to dysphagia. At the age of 18, Mr Wheeler moved to Cheddle Lodge,a 13 bedded specialist care facility principally for young adults run by the Stockport Cerebral Society, Registered Charity now known as Supportal Mr Wheeler was considered to be partially eligible for Continuing Healthcare Funding and as such, his health and care package was commissioned jointly by the local Clinical Commissioning Group in conjunction with Stockport Metropolitan Borough Council: At Cheddle Lodge, he needed support with all aspects of his life. Mr Wheeler was known to be at risk as a result of his epilepsy, which by 2018 had become refractory to treatment with seizures still experienced notwithstanding high doses of anti-convulsant medications. Evidence was heard in court that Mr Wheeler' 5 seizures could be unpredictable, and variable in their presentation 18th _ bility. Palsy bility. being

Whilst he did not have a specific epilepsy or seizure care plan a5 such, central to Mr Wheeler' $ care was Individual Plan for administration of buccal Midazolam (also known as rescue medication) This plan was something all staff caring for Mr Wheeler were expected to be aware of and trained to act upon: In broad terms, the Plan required staff on becoming aware of Mr Wheeler having a seizure to start timing it, ad should it persist for 5 minutes or longer, to administer Midazolam into his buccal cavity. The Plan contained details for how staff should act in the event of any difficulties administering the medication, 0r in the event James were to show other signs of illness in the course of the seizure: Inherent in the system for administration of rescue medication was the need for staff to have a process in place whereby a seizure could be promptly identified and acted upon: Overnight, staff at Cheddle Lodge sought to achieve this by means of: a) Hourly breathing and wellbeing checks; and b) Wi-Fi baby monitor which consisted of a microphone ad camera unit placed in Mr Wheeler' s bedroom with an audio receiver with video capability placed on a water-cooler in the main lounge area. In 2015,staff at Cheddle Lodge had sought advice Epilepsy UK as to the use of a baby monitor to detect seizure activity overnight The monitor in use at the time of James'$ death was purchased on 5th December 2017 to replace a similar unit already in use which was perceived as defective_ No further advice as to other options for monitoring was obtained in 2017,and the instruction manual for the baby monitor purchased made itabundantly clear that the monitor is not a medical device and is not intended to be used as such At approximately 05.30 on 22nd January 2018,a carer checking on Mr Wheeler found him to be unresponsive: paramedic crew arrived at just after 05.45 and pronounced Mr Wheeler dead a short time thereafter. The medical cause of Mr Wheeler' $ death was
1)a) Sudden unexpected death in epilepsy Cerebral palsy: determined as a matter of fact at the inquest that the carer looking after Mr Wheeler on the night of his death had not activated or sought to use the baby monitor:

Action should be taken

In my opinion action should be taken to prevent future deaths and believe you and your organisation have the power to take such action:

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