Gaia Pope-Sutherland

,.,,:f1 Dorset Integrated care Board Vespasian House Barrack Road Dorchester Dorset DT11TG

04 August 2022 PRIVATE AND CONFIDENTIAL Mrs RC Griffin Senior Coroner The Coroner's Office for the County of Dorset Town Hall Bournemouth BH26DY

Mrs R C Griffin RE: REGULATION 28 REPORT TO PREVENT FUTURE DEATHS I am writing to you In response to your letter to , Chair of NHS Dorset, regarding your investigation into the circumstances surrounding the tragic and untimely death of Gaia Kima Pope-Sutherland. We take our responsibility to act on the learning from serious incidents seriously and I offer you this response to outline where NHS Dorset can use its role to support and influence some of the changes you seek.
1. As per Paragraph 2 (i) of your report outlining your concerns, a review will be undertaken of the nursing resources in epilepsy care locally within the Dorset Epilepsy Service. The review will: a) Encompass the full epilepsy health provision in Dorset including primary and secondary care for adults and children b) Cover interaction with other specialities where pertinent to patient care and service improvements c) Specifically, address the following health care service concerns raised: Concern Description Recommendation I. Lack of resourcing in epilepsy care services Review of the nursing resources:
• In the Dorset Epilepsy service Across England and Wales
• ii, Lack of communication between neurology and psychiatric teams Review of communication processes between neurology and psychiatry 32

The Epilepsy Service review will not include other health care concerns raised. These will be covered by other teams/workstreams. The expectation is for the review to take around eight weeks. I would be happy to share the progress of this review with you if that would be helpful.
2. The Regulation 28 Report will be shared and reviewed with NHS partners at the Pan Dorset Mortality Group. This will facilitate an overview of the Improvements suggested for NHS providers to take, as the ICB holds commissioning responsibility for these services. I hope the information I have offered provides some assurance that the findings of your investigation and the areas you have highlighted for the prevention of future deaths has prompted action and remains the focus of our continued commitment to supporting the safety and wellbeing of everyone who uses NHS services. As you may be aware NHS Dorset Integrated Care Board, is a newly formed organisation, which came into being on 1st July 2022, taking over the responsibilities from NHS Dorset CCG. I was appointed as Chief Executive for this new organisation and would therefore be the primary contact for any future communications. If it would be helpful to have a conversation to outline the changes that are taking place in the NHS in Dorset, I would be very happy to do so.

Dear Madam, Re: Gaia Kima Pope-Sutherland Thank you for your letter of 21'1 July 2022 enclosing the Regulation 28 Report to Prevent Future Deaths following the conclusion of the Gala Pope-Sutherland inquest. You may recall that , Head of Litigation and Inquests, attended all the Trust evidence and was present for many additional days of the evidence that you heard. I welcome your letter seeking to ensure that future deaths are prevented and that any risks to patients around epilepsy care are minimised. I understand that your concern arises from the evidence of Specialist Epilepsy Nurse who indicated (point 1 (iii)) that there are 10,000 patients in Dorset with epilepsy who are overseen by twCJ specialist epilepsy nurses, and felt that there were ) insufficient resources to treat the patients. I have asked my Senior Management Team to analyse the epilepsy data, and they discussed the matter further with Dr and Specialist Nurse in order to understand the figures outlined to you during evidence. The data itself comes from the Dorset Epilepsy Dashboard. The Dashboard draws in information from GPs and relates to clinical coding, capturing information such as the types and groups of patients, including socio-economic background, pregnancy and patients suffering with learning disabilities. As at 19th August 2022 the Dashboard showed there were 10,749 patients with epilepsy in Dorset (9,916 adults). Of these patients it is estimated that 50-60% are seizure free, giving figures of 3,966
-4,958 adults with active epilepsy. The Dashboard is a live programme and figures will change daily. The information•it captures continues to be developed with the next iteration planned for Autumn 2022. Nurse has confirmed that in terms of these active patients, contact with them can be via telephone, emails or seeing them in the nurse led clinic. Frequency of contact from a patient however can be very variable, and is difficult to capture accurately in statistics. Nurse has explained that for some patients, they may call just when they have a crisis, whereas others may call weekly or even more frequently, which means the nature of the demand for the service is unpredictable. Nurse estimated that in terms of nurse led

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clinics, each nurse would see approximately 1,300 patients each year in clinic (i.e. a total of 2,600 for the service) in addition to telephone and email contacts. We hope this is helpful clarification. Turning to your specific Preventing Future Death concerns: 2 (i) Lack of resourcing of epilepsy services I am pleased to inform you that since the Gaia Pope-Sutherland inquest concluded the Trust has appointed a new full time Band 4 epilepsy co-ordinator to the team, who directly supports the two epilepsy specialist nurses. It is anticipated that the successful candidate will commence in post on 1st October 2022. The main duties of this role include:
1. To work without direct supervision with individual patients as delegated by the qualified Nurse to ensure that treatment plans have been implemented and to monitor the impact of medication changes including looking at seizure recording. To also help implement lifestyle changes which may impact on seizure control.
2. To work using a holistic approach to identify patient's goals for care and agree a personalised care and support plan.
3. Emailing - as appropriate - referrals to other teams and agencies e.g. Steps to wellbeing, social services, Community Learning Disability Team and Homestart.
4. Monitoring patient attendance at appointments and following up vulnerable patients who do not attend as appropriate. Work closely with the frequent attender team based in the emergency department and the ambulance service.
5. Following up patients who present to the emergency department with seizures and ensuring that a pathway is in place for future nurse or consultant appointments as appropriate and signposting to advice for patients waiting to be seen.
6. Reviewing and typing updated protocols, policies, patient information leaflets and other documents as required. )
7. Setting up a webpage for the service and monitoring it's use and update as required. 8 . Assisting in running patient wellbeing groups, and training as required under the direction of the Qualified Nurse.
9. Helping patients to access self-management education courses, peer support or other interventions that support them in managing their long term condition and improving their health and wellbeing. The Band 4 epilepsy co-ordinator will report directly to the two epilepsy nurses and Dr

In addition, the Trust is currently in the process of recruiting to the epilepsy team a part time 1 day a week Band 7 specialist nurse. This is a temporary post with funding for 12 months. The successful candidate has a long track record of dealing with Children & Young Persons who suffer from epilepsy which will be of great assistance to young people transitioning to adult epilepsy care. Whilst this individual is employed through our bank, we will be reviewing the impact, with the aim of developing a substantive model and funding, as part of the system working through the Integrated Care Board's review.

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. In relation to your request for consideration of a review of the nursing resources in epilepsy care locally in the Dorset Epilepsy Service, I can confirm that the Integrated Care Board (ICB) are carrying out an 8 week review which started on 11 August 2022. The review team, informed by the Getting It Right First Time (GIRFT) reports for neurology and epilepsy, are looking at the entire Epilepsy and Neurology service. This will be specifically considering:
• Local GIRFT review of Dorset Neurology Services in 2019
• National GIRFT Review of Neurology Services 2021
• Relevant NICE Guidance
• MHRA Drug Safety Updates
• Neurology Clinics
• Paediatric to Adult Services Transition
• Neurology and Mental Health
• Workforce resources We have shared our GIRFT reviews of 2019 and 2021 and are currently working collaboratively with the ICB to assist the review. Those involved in the review include the UHD Chief Medical Officer, senior members of the Neurology team and our Productivity and Efficiency lead. We are awaiting the timescales to be confirmed for the ICB to share the findings of the review. However, it is envisaged that the review will be followed up by a longer term joint working group to take forward the recommendations. 2(ii) Communication between neurology and psychiatric teams I am grateful for the clarification received on 26 July 2022 that the concern in relation to communication does not relate to the Trust at a local level and is directed at the position nationally and the national body for neurology services. I plan to update you on progress in approximately 12 months to allow time for the recommendations of the ICB to be considered and actions identified. I hope this is acceptable and in the meantime if you have any further queries please do not hesitate to contact

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Dear Madam, Re: Regulation 28: Prevention of Future Deaths - Miss Gaia Kima Pope-Sutherland Inquest I write further to your Prevention of Future Deaths report dated 2i81 July 2022, issued in response to evidence heard during the inquest into the death of Miss Gaia Kima Pope ­ Sutherland (Gaia). The incredibly sad and distressing events surrounding Gaia's disappearance and untimely and tragic death have been the subject of a Trust Root Cause Analysis (RCA) investigation and a number of changes in practice have already been implemented, of which I understand you are aware. We, as a Trust, are committed to taking forward the further learning identified during the course of the inquest. I appreciate you bringing the six additional specific issues of concern to our attention, and I hope that this response provides assurance as to the action we have initiated to address those issues. I am also grateful to the court for providing clarification that the following specific concern relates to national bodies, as opposed to Dorset Healthcare University NHS Foundation Trust ("the Trust"), and therefore I will not comment further on this as part of my response: Further I am concerned that there could be future deaths as a result of the lack of communication between neurology and psychiatric teams and request that there is consideration as to how to ensure effective lines of communication between the 2 disciplines. Please find below our response to the six concerns raised in respect of the Trust
1) As per paragraph 1(ix) above, the occurrence of sexual harassment or assault whilst an inpatient at one of DHUFT's inpatient um1s could have a detrimental effect on a person's mental health which could have fatal consequences. I request that consideration is given to a policy being put in place to provide guidance to staff as to how to deal with this situation. 21

I note that in her letter to you dated 11 th July 2022, , Service Director, outlined the following Trust action being taken in response to the evidence she gave during the course of the inquest. I reproduce the relevant paragraph of letter below:
1. To introduce a Trust procedure that deals with victims of sexual violence when they come onto wards, in terms of safeguarding them from future incidents I deterioration on the ward. In addition ta consider specific guidance for staff as to how to support a patient following a sexual incident. I can confirm that I have written to , Deputy Chief Nursing Officer, on 8th July 2022 to ask that he identify a member of the Sexual Safety working group to lead on drafting a procedure that deals with how to best support victims of previous sexual violence when they are admitted to an inpatient unit. The procedure will also cover what staff need to do upon a patient reporting a sexual assault or incident to them (both within an inpatient and a community setting). I have asked to ensure that the procedure is finalised, approved and disseminated by 31 st October 2022. I would therefore suggest that I update you on this matter by Friday 11th November 2022, if that is acceptable to you. In addition to the above, the Trust also already works to the Bournemouth, Christchurch and Poole and Dorset Multi-Agency Safeguarding Adults Procedures, which detail definitions of sexual abuse and exploitation and how to raise a concern. That procedure includes an appendix on the roles and responsibilities of other agencies and includes details on the responsibilities of employees and managers in respect of harm, neglect and exploitation. We welcome your recommendation to strengthen these procedures with supplementary guidance specific to sexual harassment, assault and abuse, and believe the above forementioned actions, which are underway, address this point.
2) As per paragraph 1(x) above, there is no specific policy in place wllhin DHUFT around contact with the family or dealing with the Think Family approach. A lack of contact with family members, who know the patient best, could lead to information gaps, which could lead to future deaths. I request that consideration is given to a policy being created around contact both to, and from, a patient's family. In response to this concern, we will establish a working group led by , Interim Deputy Chief Nursing Officer, to develop a policy on Working with Families and Carers. The policy will cover expectations in respect of communication and engagement with and from families and carers that a patient wishes to involve in their care. The policy will also explain clear1y what the Think Family safeguarding approach is and how staff can work within this approach when there are safeguarding concerns. The development of the policy will be a co- produced piece of work between professionals working in services and people with lived experience of using mental health services and of supporting someone living with a mental health condition. The working group will also include the Trust's Carers Development Lead, the Lead for Recovery and Social Inclusion, and a member of the Trust's Safeguarding team. The working group will ensure the development, ratification and circulation of the policy to staff by 31st January 2023.
3) As per paragraph 1(xi) above, information could be lost on lengthy RiO records held by DHUFT if there is a significant number of records, and I therefore request that consideration is given to a guidance document dealing with how and what information should be flagged on RiO which could be provided to all staff at DHUFT. I would further
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request consideration is given to training staff on how to record information, so it is flagged on the record. In response to this concern, the Trust will develop a guidance document on viewing, adding and removing alerts on RiO and upload this to the Trust intranet by 30th September 2022. The existing RiO e-leaming and classroom-based learning courses, which are a mandatory requirement for new staff who will be using RiO as part of their role, will also be updated to orientate staff to the existence of the guidance and to demonstrate how and when to use the alerts system on RiO. This will be updated by 31 81 October 2022. This training will also be available as a standalone a-learning module, which will be available to all existing RiO users in the Trust. The a-learning module will be promoted to staff via email and via dissemination at the CMHT Team Leaders workshop. This will be available and disseminated by 31 at October
2022. This work will be led by our Clinical Systems Team and Patient Safety Team in partnership. Please note we have focused our action on the alerts system on RiO. As outlined in the evidence given to you by , there is also a separate function on RiO of flagging a progress note as a significant event so that it informs the risk assessment. We have not identified any further actions for this function, as this already forms part of our RiO training programme.
4) As perparagraph 1(xii) above, I would request that consideration is given to providing training to all staff on the access to Community Mental Health services which could also cover the processes regarding discharge planning from the care of the mental health teams. I and my team note your concerns that you considered there to be "some ambiguity and inconsistency during the evidence regarding the content of the Integrated Community Mental Health Teams (CMHT's) operational policy, and the understanding and application of it" The Trust team has considered carefully your recommendation that training be provided to all staff on access to Community Mental Health Services, including the process for discharge planning. It is our view that there is not a misunderstanding or ambiguity amongst staff with regards to accessing CMHT's or in respect of discharge from the service, but that clinical judgement is used by staff. It is our belief that the issues that arose during the evidence of Trust witnesses reflect a national problem that was described in the evidence provided by As you may know, CMHT's were commissioned some thirty years ago, to work with a population of people with what was previously clinically defined as userious Mental Illness". The service .was ) primarily set up, and resourced, as a specialist, secondary care mental health service for people with severe and enduring mental illnesses such as schizophrenia, bipolar, and treatment resistant severe depression. The threshold for the service was therefore set many years ago and was designed for people who had significant mental health needs. We fully recognise that in 2022, this model is not well placed to meet the wider mental health and wellbeing needs of our patient population. What is now needed is a mental health and wellbeing system that offers a range of support from varying organisations that can provide advice, guidance, information, signposting, education, support, care and treatment that meets a broader range of needs. Some of those needs fall into what we would recognise as a diagnosable mental illness, that will benefit from an evidenced based, clinical treatment, and many of those needs benefit from a non-medical or non-clinical model of support and care. Dorset is not alone in trying to transform its community mental health services. It is in this context that access to CMHT's has increasingly come under scrutiny, as our local population look for a service to meet the full range of needs that come under the broad umbrella of mental health. Not all of these services exist, and for those that do, they are currently not well coordinated as a system, but considerable effort is being made ta integrate and meet wider need.
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In respect of the care provided to Gala, the Trust remains of the view set out in the RCA report (and reiterated by Trust witnesses), that Gaia did not meet the eligibility criteria for CMHT care on the occasions she was discharged from CMHT care in December 2016 and March 2017, and also at the point she was assessed under the Mental Health Act ("MHA") in October 2017. That is not to diminish the difficulties Gaia faced, or her level of distress. We do not dispute that the failure to refer Gaia to Steps to Wellbeing ("STWB") for her Post Traumatic Stress Disorder in December 2016 was a missed opportunity. There were also missed opportunities in terms of the assessment and onward plan of care following the MHA assessment in October 2017, which are acknowledged by the Trust and formed part of the jury's conclusions. The Trust has taken action to address these issues as detailed in witness statement of 16 June 2022, and as set out in the evidence she gave to you, namely through: (i) the CMHT/STWB interface/screening meetings and updated SOP; and (ii} the updated SOP for Flow of Information following MHA Assessments For these reasons and the transformation work being carried out as described in this letter, the Trust does not consider that implementing an action to train Trust staff on the access to CMHT's would resolve the issues raised. It is our belief that the issues highlighted will be addressed through the transformation work ) that the Trust is closely engaged with, which was touched upon in the evidence of . The NHS Long Term Plan and the Commissioning Framework for Community Mental Health, sets out a new vision of mental health support provided by health, social care and voluntary, community and social enterprise (VCSE) organisations, beyond the model of CMHT care. In, Dorset, the multi-agency, coproduced project to deliver this vision is known as the Mental Health Integrated Community Care (MHICC) programme. The programme has reached the stage where it is co-designing a new operational model of care, to begin implementation in 2023 / 2024. One of the key areas the MHICC is working to address is providing better mental health support and care at a primary care level (beyond STWB, which offers psychological treatment for a specific range of conditions). The transformation programme is looking at how we can implement a new model of care, so that we can provide open access to mental health services at a primary care level to meet someone's needs, without eligibility criteria or thresholds. We have tested a virtual multi-disciplinary team in Poole between GP's, social care, STWB, the VCSE sector and CMHT's, and you may be pleased to note that we are working together to discuss the needs of patients and how best those are met in a coordinated way. We are also piloting a Peer Specialist (person with lived experience of mental health) working in a GP surgery in North Dorset, offering support to anyone who wishes to see a professional about mental health need, with support and supervision from the GP, STWB and CMHT. If successful, these are some of the ideas that may be rolled out across primary care, to meet patient mental health need. The Trust believes that the transformation programme will be the most effective approach to addressing the concerns raised in respect of CMHT care and the wider issues of access to mental health support, as opposed to implementing training on the existing CMHT model for staff. The Trust would be happy to keep you updated and provide information about the MHICC transformation programme if you would welcome that.
5) As per paragraph 1(xiii) above, when a Mental Health Act assessment is undertaken, there is a possibility that information may not be fed back to the GP in the best way or in a timely manner, if it is not fed back by those from the Mental Health team, and I therefore request that consideration is given to the DHUFT representatives forwarding information, directly to the GP, rather than through the discharging team at the acute hospital. This may include their RiO record notes, or their assessment notes. 24

This requirement has been considered by Deputy Chief Medical Officer. You heard during the course of the inquest (and as part of Dorset Council's evidence) that relevant information and a report following the assessment will be provided to the GP by the Approved Mental Health Professional (AMHP), who is part of and coordinates the assessing team. Dr has met with his clinical colleagues and it has been agreed that (in addition to this information provided by the AMHP): i) A RIO template will be designed to enable a section 12 Doctor to complete and set out key summary patient information following a MHA Assessment conducted in an acute hospital setting; ii) All doctors undertaking Section 12 work will be written to, to advise them of the template and provide them with guidance on how to use it. iii) The completed template will be sent to the patient's GP following a MHA assessment taking place in an acute hospital setting; and iv) A blank copy of the template, and details regarding the requirement for its use, will be added to the SOP for Flow of Information following a Mental Health Act Assessment. The Trust has agreed with your helpful recommendation and will formally amend the SOP to remove the paragraph previously inserted at section 3.2 during the course of the inquest, which outlined the following requirement:
3.2 In addition and specific to MHA assessments undertaken in an acute hospital setting (e.g. Poole Hospital, Royal Bournemouth Hospital, Dorset County Hospital), the Doctor(s) taking part in the MHA assessment must provide a written or electronic copy of the outcome of their assessment ta the acute hospital ward Doctor responsible for the person's care whilst in the acute hospital, so that this information can be reflected accurately in the acute hospital discharge summary. This will ensure a comprehensive discharge summary detailing the physical and mental health care and assessments a person received whilst in the acute hospital. This will be replaced with suitable wording to reflect the need to write to the GP directly using the new RiO template following a Mental Health Act assessment taking place in an acute hospital setting. This template will be developed and made live in the RiO system by 31 st January 2023, and the SOP updated by this date and issued to staff.
8) As perparagraph 1 (xiv) above, in respect ofthe feeding back of information to the GP by the AMHP which is detailed at paragraph 2. 10 ofthe Standard Operating Procedure for the flow of information following Mental Health Act assessments, I would request that consideration is given by Dorset County Council, BCP Council and DHUFT to reducing this timeframe from 7 days to 72 hours. Although this is a decision for Dorset County Council and BCP Council, the document is a DHUFT document and so will require their consideratt'on too. has written to Dorset Council and BCP Council on 27th August, 31 81 August and 9th September 2022 in respect of this matter. BCP have confirmed they are in agreement with the 72 hour timescale and tell us that they already work to this, and the Trust awaits Dorset Council's response. I can confirm that the Trust supports the recommendation to reduce the timeframe in question from 7 days to 72 hours and we will update the SOP accordingly, upon Dorset Council's agreement. I am grateful for your acknowledgement that this is a decision for the two councils in question, as opposed to the Trust. I hope that In respect of the concerns raised, the actions I have detailed above addresses those matters. I plan to provide a further written update to you regarding the progress of these 1111 25

action by 31 81 May 2023. Once again, I am again grateful for you bringing these Issues to my attention.

Dear

Ra: Regulation 28 Report to Prevent Future Deaths I am responding on behalf of the Association of British Neurologists (ABN) following your letter of 21 st July 2022 regarding the Coroner's report following the Inquest around the death of Gaia Kima Pope-Sutherland. The ABN is a professional organisation with the overarching aim to improve the health and well-being of people with neurological disorders by advancing the knowledge and practice of neurology in the British Isles. There were two specific concerns regarding the tragic circumstances of the death of Gaia Klma Pope-Sutherland listed: 2i: "there could be future deaths locally and across the country due to the lack of resourcing of epilepsy services. I request consideration is given to a review of nursing services in epilepsy care locally -in Dorset Epilepsy Service, and generally across England , and Wales." Neurology and epilepsy services across the country are stretched, and these workforce issues are no different from other medical specialist services across the UK. This includes neurologist and specialist nursing roles. For the latter the assessment of numbers is more complex as some are employed by acute medical NHS trusts and others by community NHS Trusts, but it is likely there are regional differences. The ABN does not have access to the numbers of epilepsy nurses but the ABN Epilepsy Advisory Group may be able to comment on numbers and the level of resourcing. To this end I have asked the Epilepsy AG for comment on this and how the system could work with more resource. 2ii: "further I am concerned that there could be future deaths as a result of the lack of communication between neurology and psychiatric teams and request that there is

consideration as to how to ensure effective lines of communication between the 2 disciplines." I would agree with Prof who gave evidence at the inquest regarding lack of communication between community psychiatric and neurology teams. He highlighted the role that GPs had previously played as "communication hubs" to have an overview of the specialists involved, but that they do not now have the time or resources to fulfil this role. The use of different IT systems between Primary care, NHS Hospital and Mental Health Trusts also does not help this situation. We have suggested the following actions that could be helpful:
- Ensuring all communication from psychiatry is copied to the treating neurologist (clinic letters and discharge summaries) and vice versa. The neurologist treating the epilepsy is informed if a patient is admitted to acutely to psychiatry. This will help inform care as some of the treatments used in psychiatry may have an impact on the seizures. Hospital neurologists include a line in their clinic letters to GP with a statement along these lines of "I would be grateful if you could forward copies of letters and discharge summaries from any psychiatric appointment, admission or other epilepsy-related admissions". I will also bring communicate these views with Prof President of the Royal College of Psychiatrists, to discuss how to improve these lines of communication. Any new outcomes from the actions above will be communicated to you. Please send any communication regarding this directly to myself rather than via my NHS secretary to avoid any unnecessary delay. My email is 11!!!!!111! 1!111111••• Please also copy to the ABN using the contact details on page 1.