Julie Barrow

PFD Report All Responded Ref: 2019-0325
Date of Report 30 September 2019
Coroner Alison Mutch
Response Deadline est. 3 January 2020
All 1 response received · Deadline: 3 Jan 2020
Coroner's Concerns (AI summary)
The hospital failed to hold best interest meetings, implement a reasonable adjustments care plan, and communicate effectively, exacerbated by poor staff awareness and loss of a learning disability liaison role.
View full coroner's concerns
In the circumstances it is my statutory duty to report to 1.The inquest heard that despite two in-patient stays, there was no best interests meeting held to discuss her care;
2. On each of her admissions parents took needs passport in with her: The inquest was told that this should be used to develop the reasonable adjustments care plan and be accessible to all staff caring for her: On her first admission there was no reasonable care plan put in place despite the fact that she had clear and significant disabilities that would have benefited from an effective plan and her passport was available. Her passport location was not known by all staff caring for
3. Julie Ann Barrow was cared for devotedly in hospital by her parents who are in their 80s. Their evidence to the inquest was that Julie was never effectively communicated with by clinicians treating her and her needs not understood. So far as her needs were concerned she was day 2nd you: her her her;

"invisible" to staff_ An approach that recognised just how traumatic a hospital stay and medical treatment was for her would have significantly reduced the trauma that led to her developing adjustment disorder: The consultant psychiatrist who gave evidence to the inquest was very clear that the pain and trauma of the hospital stays had caused the acute adjustment disorder;
4. parents stayed with her 24/7 to try and support her and reduce the trauma. Despite their age; their importance to her and the need for them to with her; staff at the trust expected them to sleep overnight on standard hospital bedside chairs. It was only when a complaint was escalated that attempts were made to find them alternatives to the chair;
5. The inquest was told by the safeguarding team that cuts by the Local Authority that had resulted in the loss of the learning disability liaison role, had reduced the ability of the safeguarding team to support people with learning disabilities within the hospital.
Responses
The Department of Health and Social Care Central Government
30 Sep 2019
Action Planned
The Department of Health and Social Care is developing a learning disability and autism training package to be tested in 2020/21, with wider rollout planned after evaluation. They will also amend the Health and Social Care Act 2008 to mandate relevant training for NHS and social care staff. (AI summary)
View full response
From Caroline Dinenage MP Minister of State for Care Department of Health & 39 Victoria Street Social Care London SW1H OEU 020 7210 4850 Your Reference: 12641/MG Our Reference: PFD-1192586 Ms Alison Patricia Mutch HM Senior Coroner, Manchester South 07 FEB 2020 HM Coroner's Court HM CORONER Mount Tabor Street Stockport MANCHESTER SOUTH SK1 3AG 54 February 2020 (s (irz , Thank you for your correspondence of 30 September 2019 to Matt Hancock about the death of Julie Ann Barrow: am replying as Minister with responsibility for learning disabilities and am grateful for the additional time in which to do so. would like to say how saddened was to read of Julie Barrows death and the tragic circumstances surrounding it: This must be a distressing time for her family and offer my most sincere condolences to them: The loss of a child is deeply distressing and can only imagine how painful it must be when there are concerns about the care provided. Your report highlights concern around healthcare professionals not having an adequate understanding of Julie Barrow's needs or recognising the importance of making reasonable adjustments to support her during her stay in hospital. would like to provide reassurance that we are taking steps to address such concerns to improve the quality of care delivered to people with learning disabilities. In June 2018, NHS Improvement published Learning Disability Improvement Standards for NHS trusts in England'. 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 concer respecting and protecting rights; inclusion and engagement; workforce; and, specialist learning disability services In terms of respecting and protecting rights, NHS trusts must demonstrate that they have made reasonable adjustments to care pathways, have mechanisms in place to identify and patients who may require reasonable adjustments, and measures to promote anti- discriminatory practice in relation to people with learning disabilities, autism or both. https limprovementnhs_ukyresourceslleaming-disability-improvement-standards-nhs-tnustsz flag "

The Standards also 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 2019/20, 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, the NHS Long-Term Plan outlines that this would 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 Leaming Disabilities Mortality Review (LeDeR) Programme_ The LeDeR Programme was established in 2015 to support local areas to review the deaths of people with learning disabilities, identify learning from those deaths, and take forward the learning into service improvement initiatives am advised that a Learning Disabilities Mortality Review of the care that Julie Barrow received has been completed and that the review concluded that the care provided fell short of good practice Leamings have been identified and am clear that Stockport NHS Foundation Trust must take the required action to improve services for people with learning disabilities. 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. The Government's response to the second LeDeR report; published in September 20183, outlined a series of actions, as well as work already underway; to address these issues and the health inequalities that people with learning disabilities experience. The theme throughout our response is that of facilitating better care of people with learning disabilities by sharing information on their needs, and making reasonable adjustments to improve access, and the responsiveness of services to meet those needs: The Government's response to the second LeDeR report highlighted a number of initiatives already in place or under development to strengthen information sharing: These include the piloting, by NHS Digital, of a reasonable adjustment flag on patient records to indicate the support needs and reasonable adjustments that an individual may require The flag supports improved communication between patients, their carers and clinicians, leading to more personalised and safer care and better outcomes In the trial, staff access information through the patient s record on the Summary Care Record, which is designed httpsIlww longtenplan nhs ukl httos Ilassets publishing service gov uklgovemmentluploads/systemluploadslattachment_datalfilerags60/govemment: response-to-leder programme-Znd-annual-report pdf key

to share information about patients: In the longer term , the flag will be integrated within local clinical systems: The NHS Long-Term Plan commits to digital in the patient record by 2023/24, to ensure that staff know whether a patient has a learning disability or autism: Local LeDeR reviews have also 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 disabilities: For this reason, we have consulted on the introduction of mandatory learning disability and autism training for health and care staff. In the Governments response to the consultation' , published on 5 November 2019, we set out a series of proposals that will ensure that health and social care staff will, over time, receive training consistent with the Core Capability Frameworks for People with a Learning Disability and Supporting Autistic Peoples. These Frameworks set out the core skills and knowledge that staff supporting people with learning disability or autism should have, depending on the nature and intensity of care or support give. This will ensure that staff have the skills and knowledge that are appropriate to their role. In this regard, we will work with professional bodies and the Devolved Administrations to align pre-registration training as closely as possible with the two Core Capability Frameworks and work towards a common curriculum for pre- registration training in due course: Health Education England is developing an e-learning disability awareness training package for Tier 1 of the Core Capabilities Framework for Supporting People with Learning Disability. This was a commitment made by the Government in its response to the second LeDeR report. This online tool is scheduled to be completed by the end of March 2020 and will be available on the Mind-Ed Platfom ~ a free educational resource_ For Tier 2 training we will develop and test a learning disability and autism training package through 2020/21 in a number of geographical and service settings We will undertake an evaluation of the training package to inform the final design of training and wider roll out_ To mandate the training, we will amend the Health and Social Care Act 2008 (Regulated Activities) Regulations 20146, to require NHS and social care providers carrying out regulated activities to ensure that their staff have relevant levels of training in learning disability and autism Other levers will be used t0 mandate training for staff working in non-regulated activities. Finally, turning to your concern about cuts to Local Authority funding and the loss of the disability Iiaison officer, can advise that due to a range of Government actions, Stockport Metropolitan Borough Council will receive an additional E21.Imillion for adult social care in bttps Ilassets publishing service gov uklgovemmentluploads/systemuploadslattachment_datalile/844356lautism-and- leaming-disability training for_-stal consultation -response pdf httes Jl skillsfonealth orguklserviceslitem/945-capabilities-frameworks https Ilwlegislation goK uklukdsi/2014/97801111.17613/contents key flag they

2019/20, including E1.3million allocated from the E24Omillion Winter Funding announced at the 2018 Budget: With full take-up of the social care precept? in 2019/20, based on their previous decisions, Stockport Council could receive a total of E52.8million additional funding between 2017/18 and 2019/208. It is for local authorities to determine how this funding is used to support adult social care services hope this response is helpful. Thank you for bringing these concerns to my attention: EAROLINE DINENAGE The Govemment has allowed Iocal authorities that provide adult social care services t0 increase their council tax by up to 2% for Iocal adult social care_ Nominal terms:
Sent To
  • Department of Health and Social Care
Response Status
Linked responses 1 of 1
56-Day Deadline 3 Jan 2020
All responses received
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Source: Courts and Tribunals Judiciary

Report Sections
Investigation and Inquest
On 3rd April 2019 | commenced an investigation into the death of Julie Ann Barrow. The investigation concluded on the 121h September 2019 and the conclusion was one of Accidental Death. The medical cause of death was 1a) Traumatic Brain Injury
Circumstances of the Death
Julie Ann Barrow had significant leaming disabilities. She was to undergo an elective examination at the Manchester Royal Infirmary on 24t August 2018. On the 17th August 2018 she attended Stepping Hill Hospital with perianal pain and rectal bleeding: She was admitted: No reasonable adjustment care plan was completed. She was reviewed over the next few with a plan to transfer to Manchester Royal Infirmary for the elective procedure on 24t August 2018. On 23rd August 2018 the Manchester Royal Infirmary said she should at Stepping Hill Hospital for treatment: She was distressed by the decision: A CT scan at Stepping Hill Hospital on 28th August 2018 was followed by a discharge. On 8th September 2018 she was readmitted with suspected painful days the stay haemorrhoids. A planned examination on 11th September 2018 was cancelled after she had waited all on nil by mouth. On 12th September 2018 it went ahead and identified haemorrhoids. No surgical intervention was deemed to be required. No best interests meeting took place. On glh November 2018 she presented with further pain but was too distressed for a full examination to take place. On 12th November 2018 she was diagnosed with adjustment disorder in the context of the recent traumatic events around her bleeding, the investigations and the surgical procedures she had undergone. She was given diazepam and chlorpromazine to manage her anxiety and distress These had a significant sedative effect on her: On 1st April 2019 she fell on the stairs at the family home. She was admitted to Stepping Hill Hospital and then Salford Royal Hospital. An un-survivable brain injury was diagnosed. She died at Salford Royal Hospital on April 2019.
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.
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Data sourced from Courts and Tribunals Judiciary under the Open Government Licence.