Julie Taylor
PFD Report
All Responded
Ref: 2019-0454
All 2 responses received
· Deadline: 18 Feb 2020
Response Status
Responses
2 of 1
56-Day Deadline
18 Feb 2020
All responses received
About PFD responses
Organisations named in PFD reports must respond within 56 days explaining what actions they are taking.
Source: Courts and Tribunals Judiciary
Coroner's Concerns
_
The inquest heard that upon her admission to hospital the Emergency Department; where she spent a prolonged period of time, and Acute Medical Unit (AMU); had not recognised the need for a reasonable adjustment care plan to help them understand her complex needs: One was not put in place until she reached a medical ward. The trust had since her death taken to rectify the position and avoid it happening again. The inquest heard that it was unclear if nationally there was a clear understanding in Emergency Departments and AMU's of the need for reasonable care adjustment plans and the impact that lack of provision could have on delivering effective care to those with learning disabilities in an acute setting; 2_ No formal best interests meeting(s) waslwere held whilst Julie Taylor was an inpatient at the acute hospital. Key decisions were taken regarding what tests to carry out; where to nurse her and whether to place her on End of Life care without the benefit of a best interests meeting: Decisions were taken with no rationale for them being documented in her notes. The inquest heard that the trust had taken steps to promote the use of best interests meetingslimproved documentation in similar cases in the future but that nationally there was a lack of consistency around the use of best interests meetingsldocumentation of decision making and rationales for those decisions; Prior to her admission to the acute hospital there had been on-going discussion about her deteriorating condition and where her care needs could more effectively met: The inquest heard that both in the community and subsequently in the acute setting there was a need for improved communication between agencies Iprofessionals to ensure a clear, consistent and effective plan was in to meet the needs of those with a learning disability. In her case it was recognised at the end of July that a learning disability acute bed would be beneficial. Driving that forward was limited by a number of factors including communication between agencies involved; The inquest also heard that a particular challenge existed where need was identified for an acute learning disability bed. There was very limited number of such beds available. In Derbyshire at the time of her need the unit had closed to new admissions and therefore any such bed would need to be sourced from outside the county the limited number of national beds. The limited number of beds meant she may well have been placed many miles from her family and other familiar sights. The fact that one was not available in the county meant that she could not be moved straight away when the need was confirmed at a meeting in August 2018; 5_ Prior to her significant deterioration in the community the inquest heard that there was some communication between her community psychiatrist and the learning disability team: There was limited evidence of a joint approach between the psychiatrist and learning disability team where prescriber in that team changed the medication Her consultant was not present at the key steps put from the meetings at the end of JulylAugust and therefore a clear clinical steer from the psychiatrist was not available to the meetings. It was unclear what expectations there should be nationally around attendance and where a key member of the team could not attend how to ensure effective communication of their views before and after meetings; 6_ In her community care setting Julie Taylor had wraparound care provided by carers who knew her well and were trained t0 deal with someone with her profound needs. In the acute setting that level of support and care was not available. As a result she became distressed and increasingly less compliant with necessary medical interventions: The inquest heard that the issue of support that can be provided to those with a learning disability in an acute setting is not particular to the trust involved in Julie's death but a national one; Julie Taylor was ultimately diagnosed with the chicken poX virus_ The delayed diagnosis was due in part to the dermatology registrar not recognising the rash as chicken The inquest heard that the reduction of chicken pox in the general population meant that junior doctors were less likely to recognise the rash and there could be a knock on delay in starting a person on anti-viral medications. This could be detrimental to their health and the eventual outcome as anti-virals were shown to have success in reducing fatalities in adults who contract the virus. There was no vaccination plan in place amongst the population with Downs Syndrome although the inquest heard were more likely statistically to develop it;
8. The IT constraints meant that the acute trust could not access the community trusts records: The community trust itself had not fully digitsed meaning not all professionals could see each other' s notes. The community trust recognised the internal issue and was taking steps to fully roll out an integrated system however communication between trusts digitally was unlikely to improve despite a recognition that it would be beneficial,
The inquest heard that upon her admission to hospital the Emergency Department; where she spent a prolonged period of time, and Acute Medical Unit (AMU); had not recognised the need for a reasonable adjustment care plan to help them understand her complex needs: One was not put in place until she reached a medical ward. The trust had since her death taken to rectify the position and avoid it happening again. The inquest heard that it was unclear if nationally there was a clear understanding in Emergency Departments and AMU's of the need for reasonable care adjustment plans and the impact that lack of provision could have on delivering effective care to those with learning disabilities in an acute setting; 2_ No formal best interests meeting(s) waslwere held whilst Julie Taylor was an inpatient at the acute hospital. Key decisions were taken regarding what tests to carry out; where to nurse her and whether to place her on End of Life care without the benefit of a best interests meeting: Decisions were taken with no rationale for them being documented in her notes. The inquest heard that the trust had taken steps to promote the use of best interests meetingslimproved documentation in similar cases in the future but that nationally there was a lack of consistency around the use of best interests meetingsldocumentation of decision making and rationales for those decisions; Prior to her admission to the acute hospital there had been on-going discussion about her deteriorating condition and where her care needs could more effectively met: The inquest heard that both in the community and subsequently in the acute setting there was a need for improved communication between agencies Iprofessionals to ensure a clear, consistent and effective plan was in to meet the needs of those with a learning disability. In her case it was recognised at the end of July that a learning disability acute bed would be beneficial. Driving that forward was limited by a number of factors including communication between agencies involved; The inquest also heard that a particular challenge existed where need was identified for an acute learning disability bed. There was very limited number of such beds available. In Derbyshire at the time of her need the unit had closed to new admissions and therefore any such bed would need to be sourced from outside the county the limited number of national beds. The limited number of beds meant she may well have been placed many miles from her family and other familiar sights. The fact that one was not available in the county meant that she could not be moved straight away when the need was confirmed at a meeting in August 2018; 5_ Prior to her significant deterioration in the community the inquest heard that there was some communication between her community psychiatrist and the learning disability team: There was limited evidence of a joint approach between the psychiatrist and learning disability team where prescriber in that team changed the medication Her consultant was not present at the key steps put from the meetings at the end of JulylAugust and therefore a clear clinical steer from the psychiatrist was not available to the meetings. It was unclear what expectations there should be nationally around attendance and where a key member of the team could not attend how to ensure effective communication of their views before and after meetings; 6_ In her community care setting Julie Taylor had wraparound care provided by carers who knew her well and were trained t0 deal with someone with her profound needs. In the acute setting that level of support and care was not available. As a result she became distressed and increasingly less compliant with necessary medical interventions: The inquest heard that the issue of support that can be provided to those with a learning disability in an acute setting is not particular to the trust involved in Julie's death but a national one; Julie Taylor was ultimately diagnosed with the chicken poX virus_ The delayed diagnosis was due in part to the dermatology registrar not recognising the rash as chicken The inquest heard that the reduction of chicken pox in the general population meant that junior doctors were less likely to recognise the rash and there could be a knock on delay in starting a person on anti-viral medications. This could be detrimental to their health and the eventual outcome as anti-virals were shown to have success in reducing fatalities in adults who contract the virus. There was no vaccination plan in place amongst the population with Downs Syndrome although the inquest heard were more likely statistically to develop it;
8. The IT constraints meant that the acute trust could not access the community trusts records: The community trust itself had not fully digitsed meaning not all professionals could see each other' s notes. The community trust recognised the internal issue and was taking steps to fully roll out an integrated system however communication between trusts digitally was unlikely to improve despite a recognition that it would be beneficial,
Responses
Response received
View full response
Dear Ms Mutch Re: Regulation 28 Report to Prevent Future Deaths Julie Helen Taylor 23/09/18 Thank you for your Regulation 28 Report dated 24 December 2019 concerning the death of Julie Helen Taylor on 23 September 2018 . Firstly, would like to express my deep condolences to Julie Helen Taylor's family: The regulation 28 report concludes Julie Helen Taylor's death was a result of 1a) Pneumonitis; 1b) Varicella Zoster virus infection; ii) Downs Syndrome, poor nutritional status_ Following the inquest you raised concerns in your Regulation 28 Report to NHS England regarding 1) Clarification that all patients with a learning disability receive reasonable adjustment plan whilst they are in hospital, before formal admission; 2) Formal best interest meetings being embedded in the Trust for people with learning disabilities; 3) Training is in place for junior medical staff to recognise common rashes like chicken pox; 4) Timely information sharing between care settings. The points below address these four areas. Greater Manchester Health and Sacial Care Partreiship is made up of all the NHS organisations and counciis in the city region: We re overseeing devolution and taking charge of the EGhn health and social care budgel Jnaalatabcc Orcuul post
This response addresses matters in Stockport NHS Foundation Trust and how learning will be disseminated across Greater Manchester: You have also identified a number of areas regarding community care in Derbyshire. As Derbyshire does not fall under the remit of the Greater Manchester Health and Social Care Partnership we are unable to provide a response to those issues. Actions taken or being taken by Stockport NHS FT. Reasonable Adjustment Plans All adult patients who are in-patients of the Trust must have in place a Reasonable Adjustment Care Plan. As with core care plans the aim is that these are commenced within the first 24 hours of admission, therefore for many patients their care plan will be commenced on the Assessment Unit; whether this is the medical or surgical unit. The Adult Safeguarding Team undertake audits of the Reasonable Adjustment Care Plans The Trust met the target in October 2019. The Quarter 3 report is due to be presented to the Trust Safeguarding Group in March 2020. Actions put in place to improve compliance with this are as follows: There is already an electronic flagging system in place whereby senior nurses receive an email advising that a patient with learning disabilities has been admitted t0 their area, there is a visual on all plasma screens of a Blue Butterfly that denotes that a patient has a learning disability To support this the adult safeguarding team send out a daily email to senior nurses advising them of the patients in their areas with learning disabilities and the actions required. As guide the below are minimum standards the Trust expects for patients who have a learning disability: That with them their Hospital Passport completed by community care staff or family members and brought in with the patient A reasonable adjustment care plan completed by ward staff using passport infomation Blue butterfly is displayed above their bed Cognitive Pain Assessment Tool is used if required That their carersINOK are given a Carer's Passport That their capacity to consent to being in hospital for care and treatment is considered_ if there are doubts about capacity complete a Mental Capacity Greater Manchester Health ad Social Care Partnership is made up of all the NHS organisations and councils in the city region: We're overseeing devolution and taking charge of the EGbn health and social care budget TAn Dmabce Orcl icon the they have
Assessment: Following the Mental Capacity Assessment complete a DoLS application if relevant That their capacity to consent to treatment and care , assess capacity and treat in best interests if indicated is considered demonstrating this in documentation and if required refer to IMCA service. 2 Formal Best Interest Meetings The Trust launched guidelines for Best Interest Decisions and Best Interest Meetings in October 2019. These guidelines aim to assist and support staff in making decisions on behalf of people aged 16 and over who do not have the mental capacity to make their own decisions: It aims to provide a process and structure to making best interest decisions andlor holding a best interest meeting and should be read in conjunction with the Trust's Mental Capacity Act and Deprivation of Liberty Safeguards Policies; The Trust plans to audit the use of Best Interest Meetings since the launch of this guidance and this will take place during Q4 of 2019-2020. The Trust is also engaged in multi-disciplinary audit of the use of the Mental Capacity Act, commissioned by Stockport Safeguarding Adult Board. 3 Training for junior medical staff Chicken pox is a relatively uncommon rash in adult patients, but remains common in children: Chicken pox and the associated pneumonitis is included in the syllabus for the part 1 physicians exams (MRCP part 1) and will be covered in exam preparation. Most direct experience of chicken pox will be seen in the emergency department and paediatrics. The Trust expects its paediatric middle grade doctors to recognise common rashes such as chicken pox: will have seen chicken pox frequently during their training and recognition is part of their competencies for the e- portfolio for ST1-2. These medical grade doctors have teaching aimed at common childhood illness on weekly basis, delivered by a mix of the registrars and consultants and which cover common rashes. All children have a middle grade doctor review prior to dischargelon admission who have competencies that include the recognition of common rashes In the emergency department the junior doctors weekly training programme has a session run by the Clinical Director that teaches common childhood illnesses and this includes the recognition of rashes. 4 Timely infommation sharing between care settings It is recognised that effective communication beween the hospital and community settings is pivotal in ensuring a seamless transition of care. Consistent timely publication of the discharge summary within 48 hours of Greater Manchester Health and Social Care Partnership is made up of all the NHS organisations and councils in the city region: We re overseeing devolution and charge of the E6bn health and social care budget. Tai alce Acc Wl They taking
hospital discharge has been a focus of the Trust over the last two years. have progressed a less than 80% delivery rate, to 90% for January 2020. The aim is to achieve better than the 95% standard have set, and this remains a regular area of focus in performance reviews: Actions taken or being taken to prevent reoccurrence across Greater Manchester. 1 Learning to be presented/shared with the Greater Manchester Quality Board. This meeting is attended by commissioners, including commissioners of specialist services, regulators, Healthwatch and NICE
2. Learning to be shared with the Greater Manchester commissioners of services to assure themselves of the quality of services commission: The Greater Manchester Health and Social Care Partnership (GMHSCP) is committed to improving outcomes for the population of Greater Manchester. In conclusion key learning points and recommendations will be monitored to ensure are embedded within practice. hope this response provides the relevant assurances you require. Thank you for bringing these important patient safety issues to my attention and please do not hesitate to contact me should you need any further information:
This response addresses matters in Stockport NHS Foundation Trust and how learning will be disseminated across Greater Manchester: You have also identified a number of areas regarding community care in Derbyshire. As Derbyshire does not fall under the remit of the Greater Manchester Health and Social Care Partnership we are unable to provide a response to those issues. Actions taken or being taken by Stockport NHS FT. Reasonable Adjustment Plans All adult patients who are in-patients of the Trust must have in place a Reasonable Adjustment Care Plan. As with core care plans the aim is that these are commenced within the first 24 hours of admission, therefore for many patients their care plan will be commenced on the Assessment Unit; whether this is the medical or surgical unit. The Adult Safeguarding Team undertake audits of the Reasonable Adjustment Care Plans The Trust met the target in October 2019. The Quarter 3 report is due to be presented to the Trust Safeguarding Group in March 2020. Actions put in place to improve compliance with this are as follows: There is already an electronic flagging system in place whereby senior nurses receive an email advising that a patient with learning disabilities has been admitted t0 their area, there is a visual on all plasma screens of a Blue Butterfly that denotes that a patient has a learning disability To support this the adult safeguarding team send out a daily email to senior nurses advising them of the patients in their areas with learning disabilities and the actions required. As guide the below are minimum standards the Trust expects for patients who have a learning disability: That with them their Hospital Passport completed by community care staff or family members and brought in with the patient A reasonable adjustment care plan completed by ward staff using passport infomation Blue butterfly is displayed above their bed Cognitive Pain Assessment Tool is used if required That their carersINOK are given a Carer's Passport That their capacity to consent to being in hospital for care and treatment is considered_ if there are doubts about capacity complete a Mental Capacity Greater Manchester Health ad Social Care Partnership is made up of all the NHS organisations and councils in the city region: We're overseeing devolution and taking charge of the EGbn health and social care budget TAn Dmabce Orcl icon the they have
Assessment: Following the Mental Capacity Assessment complete a DoLS application if relevant That their capacity to consent to treatment and care , assess capacity and treat in best interests if indicated is considered demonstrating this in documentation and if required refer to IMCA service. 2 Formal Best Interest Meetings The Trust launched guidelines for Best Interest Decisions and Best Interest Meetings in October 2019. These guidelines aim to assist and support staff in making decisions on behalf of people aged 16 and over who do not have the mental capacity to make their own decisions: It aims to provide a process and structure to making best interest decisions andlor holding a best interest meeting and should be read in conjunction with the Trust's Mental Capacity Act and Deprivation of Liberty Safeguards Policies; The Trust plans to audit the use of Best Interest Meetings since the launch of this guidance and this will take place during Q4 of 2019-2020. The Trust is also engaged in multi-disciplinary audit of the use of the Mental Capacity Act, commissioned by Stockport Safeguarding Adult Board. 3 Training for junior medical staff Chicken pox is a relatively uncommon rash in adult patients, but remains common in children: Chicken pox and the associated pneumonitis is included in the syllabus for the part 1 physicians exams (MRCP part 1) and will be covered in exam preparation. Most direct experience of chicken pox will be seen in the emergency department and paediatrics. The Trust expects its paediatric middle grade doctors to recognise common rashes such as chicken pox: will have seen chicken pox frequently during their training and recognition is part of their competencies for the e- portfolio for ST1-2. These medical grade doctors have teaching aimed at common childhood illness on weekly basis, delivered by a mix of the registrars and consultants and which cover common rashes. All children have a middle grade doctor review prior to dischargelon admission who have competencies that include the recognition of common rashes In the emergency department the junior doctors weekly training programme has a session run by the Clinical Director that teaches common childhood illnesses and this includes the recognition of rashes. 4 Timely infommation sharing between care settings It is recognised that effective communication beween the hospital and community settings is pivotal in ensuring a seamless transition of care. Consistent timely publication of the discharge summary within 48 hours of Greater Manchester Health and Social Care Partnership is made up of all the NHS organisations and councils in the city region: We re overseeing devolution and charge of the E6bn health and social care budget. Tai alce Acc Wl They taking
hospital discharge has been a focus of the Trust over the last two years. have progressed a less than 80% delivery rate, to 90% for January 2020. The aim is to achieve better than the 95% standard have set, and this remains a regular area of focus in performance reviews: Actions taken or being taken to prevent reoccurrence across Greater Manchester. 1 Learning to be presented/shared with the Greater Manchester Quality Board. This meeting is attended by commissioners, including commissioners of specialist services, regulators, Healthwatch and NICE
2. Learning to be shared with the Greater Manchester commissioners of services to assure themselves of the quality of services commission: The Greater Manchester Health and Social Care Partnership (GMHSCP) is committed to improving outcomes for the population of Greater Manchester. In conclusion key learning points and recommendations will be monitored to ensure are embedded within practice. hope this response provides the relevant assurances you require. Thank you for bringing these important patient safety issues to my attention and please do not hesitate to contact me should you need any further information:
Response received
View full response
Dear Ms Mutch
In June 2018, NHS Improvement published Learning Disability Improvement Standards for NHS trusts in England1. The Standards are intended to help NHS trusts measure the quality of service they provide to people with learning disabilities, autism or both. The four Standards concern respecting and protecting rights; inclusion and engagement; workforce; and, specialist learning disability services. In relation to respecting and protecting rights, NHS trusts must demonstrate that they have made reasonable adjustments to care pathways; have mechanisms in place to identify and flag patients who may require reasonable adjustments; and, measures to promote anti- discriminatory practice in relation to people with learning disabilities, autism or both. The Standards require staff to be trained and then routinely updated in how to deliver care to people with learning disabilities, autism or both, in a way that takes account of their rights, needs and health vulnerabilities. Guidance on implementing the Standards suggests that this should include ensuring staff have been trained in learning disability and autism awareness; health issues associated with learning disabilities and autism; supporting people with challenging needs; safeguarding; human rights and mental capacity and best interest’s assessments. Compliance with the Learning Disability Improvement Standards is part of the NHS Standard Contract for 2020/21, which is mandated by NHS England for use by commissioners for all healthcare services other than primary care. While the Learning Disability Improvement Standards currently only apply to NHS Trusts and Foundation Trusts, the NHS Long-Term Plan outlines that this will apply to all NHS-funded care by 2023/242. Adherence to the Learning Disability Improvement Standards will help NHS organisations meet the recommendations from the Learning Disabilities Mortality Review (LeDeR) Programme. The LeDeR programme, established in 2015, 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 Ms Taylor’s death is currently being reviewed under the LeDeR process and I expect the local NHS to reflect on the findings of the review and take action to address any failings in the care provided 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, Ray James, who is leading work nationally to improve services for people with learning disabilities and/or autism. The most common learning points and recommendations arising from local LeDeR reviews relate to the need for inter-agency collaboration and communication, as well as greater awareness of the needs of people with learning disabilities. In addition, local LeDeR reviews have demonstrated that health and social care staff do not always have the skills and knowledge to provide effective, compassionate and safe care to people with learning 1 https://improvement.nhs.uk/resources/learning-disability-improvement-standards-nhs-trusts/ 2 https://www.longtermplan.nhs.uk/
disabilities. For this reason, we consulted on the introduction of mandatory learning disability and autism training for health and care staff. On 5 November 2019, we published our response to the consultation3 and we are now working with Health Education England and Skills for Care to develop and test, a standardised training package, backed by £1.4million investment. Work is underway to develop the training and testing will take place in a variety of health and social care settings to help shape how it will be rolled out and delivered in future. Our plans to introduce mandatory training will go a long way to ensuring more people receive the safe, compassionate and informed care they have a right to expect. Both the second4 and the third5 annual LeDeR reports highlighted the importance of care co-ordination. We have committed to publishing an evidence review of care co-ordination for people with learning disability, focused on health and wellbeing. Once this work is complete, we will be better placed to understand how this can be used to inform how care co-ordination is delivered across the health and social care sector for people with a learning disability, particularly in relation to developing guidance. Your report explains that a best interests meeting was not held while Ms Taylor was an inpatient at Stepping Hill Hospital. While a formal best interests meeting is not a duty, under section 4 of the Mental Capacity Act (2005)6 (MCA), the decision maker must take into account, if it is practicable and appropriate to consult them, the views of anyone named by the person as someone to be consulted; anyone engaged in caring for the person or interested in their welfare; and any person with lasting power of attorney or a deputy appointed by a court. The MCA Code of Practice7 recommends that staff involved in the care of a person who lacks capacity should make sure a record is kept of the best interest’s process, including how decisions are made. Healthcare professionals should follow these guidelines and any procedures in place locally. The Code of Practice is under review by the Ministry of Justice. The revised Code will improve protections for the person at the centre of the authorisation and ensure that their wishes and feelings are considered. Your report raises a concern that IT constraints meant that Stockport NHS Foundation Trust could not access records kept by the local community NHS Trust. I am advised that Greater Manchester is in the first wave of implementation of the national Local Health and Care Record programme. The primary focus of the Local Health and Care Record programme is to improve and coordinate care by capturing an individual's 3 https://www.gov.uk/government/consultations/learning-disability-and-autism-training-for-health-and-care- staff 4 http://www.bristol.ac.uk/sps/leder/news/2018/leder-annual-report-2016-2017.html 5 http://www.bristol.ac.uk/news/2019/may/leder-report.html 6 http://www.legislation.gov.uk/ukpga/2005/9/contents 7 https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/497253/Mental- capacity-act-code-of-practice.pdf
interactions with the health and care system to ensure that any authorised health or care professional is able to access essential historical information (subject to compliance with information governance requirements), about the person to whom they are providing care, regardless of where that care was provided. For example, this will ensure that for a patient transferring from an acute to a mental health setting, records relating to that patient are accessible to authorised health and care professionals. Success of the programme is dependent on each care provider reaching sufficient levels of digitisation. Turning to the concerns in your report in relation to chicken pox, the inquest into Ms Taylor’s death heard evidence to suggest that cases of chickenpox have declined in the general population and that this contributed to the delay in diagnosing chicken-pox. I am advised that Public Health England (PHE) is not aware of data to support the view that cases of chicken-pox have declined. As chicken-pox is not a notifiable disease, the main sources of data are primary care consultations and hospital admissions data. There is data to suggest that there has been a reduction in cases seen in GP consultations over time but this may reflect changes in health seeking behaviour, with less parents taking their children to their GP for suspected chickenpox. Chapter 34 of the Green Book8, which contains information for health professionals on vaccines including eligibility, recommends the use of the chicken-pox vaccine as follows: “Varicella vaccine is not currently recommended for routine use in children. However, it is recommended for healthy susceptible contacts of immunocompromised patients where continuing close contact is unavoidable. Since 2003, this recommendation includes vaccinating non-immune healthcare workers who themselves will derive benefit as they will be protected from contact with infectious patients.” There are a number of contraindicators for this vaccine, including immunocompromised children, pregnant women, and people that have had an allergic reaction either to a component of the vaccine (which contains gelatine and neomycin) or to the vaccine itself. In response to another Prevention of Future Deaths Report, the Varicella Zoster subcommittee of the Joint Committee on Vaccination and Immunisation (JCVI) has previously considered whether there is an increased risk of serious varicella infection in children with Downs syndrome. In his response to the Coroner, dated 22 August 2019, Prof Andy Pollard, Chair of the JCVI, said: “We (JCVI) considered therefore, whether there was evidence in children with Down’s Syndrome of either increased susceptibility or a major increase in the chance of a poor outcome from an episode of varicella beyond that in the infant population as a whole. We recognise that children with Down’s syndrome do suffer from infections, particularly those of the respiratory tract, more frequently than those without the condition and there is an associated immunosuppression, although the degree and type of immunosuppression appears to be variable. The varicella vaccine currently available in the UK contains a live antigen and its use is 8 The Green Book has the latest information on vaccines and vaccination procedures, for vaccine preventable infectious diseases in the UK. https://www.gov.uk/government/publications/varicella-the-green-book-chapter-34
contraindicated for people with some types of immunosuppression. Therefore, contacts of susceptible individuals are immunised, rather than the patient themselves.” “On examination of the current data available to us, we can conclude that there is an absence of evidence for either increased susceptibility or an increased chance of poor outcome from varicella infection in Down’s syndrome and further research is required.” I hope this explanation is helpful. Thank you for bringing these concerns to my attention. HELEN WHATELY
In June 2018, NHS Improvement published Learning Disability Improvement Standards for NHS trusts in England1. The Standards are intended to help NHS trusts measure the quality of service they provide to people with learning disabilities, autism or both. The four Standards concern respecting and protecting rights; inclusion and engagement; workforce; and, specialist learning disability services. In relation to respecting and protecting rights, NHS trusts must demonstrate that they have made reasonable adjustments to care pathways; have mechanisms in place to identify and flag patients who may require reasonable adjustments; and, measures to promote anti- discriminatory practice in relation to people with learning disabilities, autism or both. The Standards require staff to be trained and then routinely updated in how to deliver care to people with learning disabilities, autism or both, in a way that takes account of their rights, needs and health vulnerabilities. Guidance on implementing the Standards suggests that this should include ensuring staff have been trained in learning disability and autism awareness; health issues associated with learning disabilities and autism; supporting people with challenging needs; safeguarding; human rights and mental capacity and best interest’s assessments. Compliance with the Learning Disability Improvement Standards is part of the NHS Standard Contract for 2020/21, which is mandated by NHS England for use by commissioners for all healthcare services other than primary care. While the Learning Disability Improvement Standards currently only apply to NHS Trusts and Foundation Trusts, the NHS Long-Term Plan outlines that this will apply to all NHS-funded care by 2023/242. Adherence to the Learning Disability Improvement Standards will help NHS organisations meet the recommendations from the Learning Disabilities Mortality Review (LeDeR) Programme. The LeDeR programme, established in 2015, 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 Ms Taylor’s death is currently being reviewed under the LeDeR process and I expect the local NHS to reflect on the findings of the review and take action to address any failings in the care provided 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, Ray James, who is leading work nationally to improve services for people with learning disabilities and/or autism. The most common learning points and recommendations arising from local LeDeR reviews relate to the need for inter-agency collaboration and communication, as well as greater awareness of the needs of people with learning disabilities. In addition, local LeDeR reviews have demonstrated that health and social care staff do not always have the skills and knowledge to provide effective, compassionate and safe care to people with learning 1 https://improvement.nhs.uk/resources/learning-disability-improvement-standards-nhs-trusts/ 2 https://www.longtermplan.nhs.uk/
disabilities. For this reason, we consulted on the introduction of mandatory learning disability and autism training for health and care staff. On 5 November 2019, we published our response to the consultation3 and we are now working with Health Education England and Skills for Care to develop and test, a standardised training package, backed by £1.4million investment. Work is underway to develop the training and testing will take place in a variety of health and social care settings to help shape how it will be rolled out and delivered in future. Our plans to introduce mandatory training will go a long way to ensuring more people receive the safe, compassionate and informed care they have a right to expect. Both the second4 and the third5 annual LeDeR reports highlighted the importance of care co-ordination. We have committed to publishing an evidence review of care co-ordination for people with learning disability, focused on health and wellbeing. Once this work is complete, we will be better placed to understand how this can be used to inform how care co-ordination is delivered across the health and social care sector for people with a learning disability, particularly in relation to developing guidance. Your report explains that a best interests meeting was not held while Ms Taylor was an inpatient at Stepping Hill Hospital. While a formal best interests meeting is not a duty, under section 4 of the Mental Capacity Act (2005)6 (MCA), the decision maker must take into account, if it is practicable and appropriate to consult them, the views of anyone named by the person as someone to be consulted; anyone engaged in caring for the person or interested in their welfare; and any person with lasting power of attorney or a deputy appointed by a court. The MCA Code of Practice7 recommends that staff involved in the care of a person who lacks capacity should make sure a record is kept of the best interest’s process, including how decisions are made. Healthcare professionals should follow these guidelines and any procedures in place locally. The Code of Practice is under review by the Ministry of Justice. The revised Code will improve protections for the person at the centre of the authorisation and ensure that their wishes and feelings are considered. Your report raises a concern that IT constraints meant that Stockport NHS Foundation Trust could not access records kept by the local community NHS Trust. I am advised that Greater Manchester is in the first wave of implementation of the national Local Health and Care Record programme. The primary focus of the Local Health and Care Record programme is to improve and coordinate care by capturing an individual's 3 https://www.gov.uk/government/consultations/learning-disability-and-autism-training-for-health-and-care- staff 4 http://www.bristol.ac.uk/sps/leder/news/2018/leder-annual-report-2016-2017.html 5 http://www.bristol.ac.uk/news/2019/may/leder-report.html 6 http://www.legislation.gov.uk/ukpga/2005/9/contents 7 https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/497253/Mental- capacity-act-code-of-practice.pdf
interactions with the health and care system to ensure that any authorised health or care professional is able to access essential historical information (subject to compliance with information governance requirements), about the person to whom they are providing care, regardless of where that care was provided. For example, this will ensure that for a patient transferring from an acute to a mental health setting, records relating to that patient are accessible to authorised health and care professionals. Success of the programme is dependent on each care provider reaching sufficient levels of digitisation. Turning to the concerns in your report in relation to chicken pox, the inquest into Ms Taylor’s death heard evidence to suggest that cases of chickenpox have declined in the general population and that this contributed to the delay in diagnosing chicken-pox. I am advised that Public Health England (PHE) is not aware of data to support the view that cases of chicken-pox have declined. As chicken-pox is not a notifiable disease, the main sources of data are primary care consultations and hospital admissions data. There is data to suggest that there has been a reduction in cases seen in GP consultations over time but this may reflect changes in health seeking behaviour, with less parents taking their children to their GP for suspected chickenpox. Chapter 34 of the Green Book8, which contains information for health professionals on vaccines including eligibility, recommends the use of the chicken-pox vaccine as follows: “Varicella vaccine is not currently recommended for routine use in children. However, it is recommended for healthy susceptible contacts of immunocompromised patients where continuing close contact is unavoidable. Since 2003, this recommendation includes vaccinating non-immune healthcare workers who themselves will derive benefit as they will be protected from contact with infectious patients.” There are a number of contraindicators for this vaccine, including immunocompromised children, pregnant women, and people that have had an allergic reaction either to a component of the vaccine (which contains gelatine and neomycin) or to the vaccine itself. In response to another Prevention of Future Deaths Report, the Varicella Zoster subcommittee of the Joint Committee on Vaccination and Immunisation (JCVI) has previously considered whether there is an increased risk of serious varicella infection in children with Downs syndrome. In his response to the Coroner, dated 22 August 2019, Prof Andy Pollard, Chair of the JCVI, said: “We (JCVI) considered therefore, whether there was evidence in children with Down’s Syndrome of either increased susceptibility or a major increase in the chance of a poor outcome from an episode of varicella beyond that in the infant population as a whole. We recognise that children with Down’s syndrome do suffer from infections, particularly those of the respiratory tract, more frequently than those without the condition and there is an associated immunosuppression, although the degree and type of immunosuppression appears to be variable. The varicella vaccine currently available in the UK contains a live antigen and its use is 8 The Green Book has the latest information on vaccines and vaccination procedures, for vaccine preventable infectious diseases in the UK. https://www.gov.uk/government/publications/varicella-the-green-book-chapter-34
contraindicated for people with some types of immunosuppression. Therefore, contacts of susceptible individuals are immunised, rather than the patient themselves.” “On examination of the current data available to us, we can conclude that there is an absence of evidence for either increased susceptibility or an increased chance of poor outcome from varicella infection in Down’s syndrome and further research is required.” I hope this explanation is helpful. Thank you for bringing these concerns to my attention. HELEN WHATELY
Action Should Be Taken
In my opinion action should be taken to prevent future deaths and believe you have the power to take such action_
Report Sections
Investigation and Inquest
On 25ih September 2018, I commenced an investigation into the death of Julie Helen Taylor: The investigation concluded on the 28th November 2019 and the conclusion was one of Narrative: Died from the complications of the chicken pox virus contracted whilst awaiting discharge from hospital to a suitable rehabilitation facility: The medical cause of death was 1a) Pneumonitis; 1b) Varicella Zoster virus infection; II) Downs syndrome, poor nutritional status
Circumstances of the Death
Julie Helen Taylor had Downs Syndrome and consequential significant learning disabilities. She was resident at a residential care facility. Her care was funded and she required 24/7 support and was on long term DoLS. She had an allocated social worker and was under the care of the community learning disabilities team: From June 2018 she began to consistently refuse to eat, Between 2018 and August 2018 her weight dropped from 1Ost 31b to 7st 1Olb. Two community Multi-Disciplinary Team meetings were held; one on 31st July 2018 and the other on 16th August 2018. On 31st July 2018 the possibility of a Community Treatment Review was raised. On 16th August 2018 the meeting concluded a learning disability hospital admission was required. This required approval: The Derbyshire facility was closed to new admissions and an out of area bed or an altemative was required. It was unclear what May form this would take_ Julie Taylor continued to deteriorate and on medical advice was taken to Stepping Hill Hospital on 21st August 2018 with symptoms of dehydration. She was accompanied by carers who gave a detailed account of her needs and situation. She lacked capacity: A reasonable adjustments care plan was not completed until 23rd August 2018.It was recognised a side room would be a more suitable environment but one was not available There was no clear multi-disciplinary discussion in relation to the decision: Her nutritional status deteriorated further whilst in hospital: Between 21st August 2018 and her last documented weight on 8th September 2018 she lost 14 kilograms: Her MUST score was
6. There was no referral to the nutritional Multi-Disciplinary Team: She was discharged by the Hospital Dietician Team whilst her weight loss continued. There was no best interests meeting regarding her care in the hospital. She was not seen by a learning disabilities consultant until 7lh September 2018. The review was conducted on information provided by the community psychiatrist that was limited and in parts inaccurate. A diagnosis of moderate to severe depression was made and olanzapine and sertraline which had been stopped in the community in May 2018 were restarted. A meeting on 6th September 2018 agreed a Continuing Healthcare Assessment was required. There were ongoing discussions regarding a discharge destination: On 13th September 2018 whilst awaiting discharge she developed a rash: A specialist dermatology registrar on 14th September 2018 believed it was a reaction t0 medication. The medications were stopped. She deteriorated rapidly. She was deemed not fit for intensive care. On 16th September 2018 her rash was identified as being chicken pox and anti-viral medications started. On the balance of probabilities the virus was contracted whist an in-patient at the hospital. She showed initial signs of improvement following treatment but the lung damage from the virus infection was significant: On 23rd September 2018 she died at Stepping Hill Hospital from pneumonitis:
6. There was no referral to the nutritional Multi-Disciplinary Team: She was discharged by the Hospital Dietician Team whilst her weight loss continued. There was no best interests meeting regarding her care in the hospital. She was not seen by a learning disabilities consultant until 7lh September 2018. The review was conducted on information provided by the community psychiatrist that was limited and in parts inaccurate. A diagnosis of moderate to severe depression was made and olanzapine and sertraline which had been stopped in the community in May 2018 were restarted. A meeting on 6th September 2018 agreed a Continuing Healthcare Assessment was required. There were ongoing discussions regarding a discharge destination: On 13th September 2018 whilst awaiting discharge she developed a rash: A specialist dermatology registrar on 14th September 2018 believed it was a reaction t0 medication. The medications were stopped. She deteriorated rapidly. She was deemed not fit for intensive care. On 16th September 2018 her rash was identified as being chicken pox and anti-viral medications started. On the balance of probabilities the virus was contracted whist an in-patient at the hospital. She showed initial signs of improvement following treatment but the lung damage from the virus infection was significant: On 23rd September 2018 she died at Stepping Hill Hospital from pneumonitis:
Copies Sent To
4) Derbyshire County Council; 5) Derbyshire Community Health Service NHS Foundation Trust; 6) Moore Care
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Data sourced from Courts and Tribunals Judiciary under the Open Government Licence.