Dear Mr Broadbridge Re: Zoe Zaremba Regulation 28 Report Further to your letter of concern of 21st April 2022 and the subsequent Regulation 28 Report to Prevent Future Deaths, I write to detail the actions the Trust has taken and those that we continue to implement to address the concerns you identified during the inquest into Zoe Zaremba’s death. I would like to assure you that as an organisation we have taken your concerns very seriously and are committed to work with our partners to improve the care for patients and their families. For ease of reference, I will address each of these in turn: Concern 1 – Zoe was diagnosed at age 16 years as being autistic by CAMHS with a designation of Asperger’s Syndrome. Her medical records recorded that. This is also our understanding of when Zoe was diagnosed with autism. Concern 2 - In or about 2016 she was wrongly attributed by the Mental Health Service, TEWV, clinicians - who knew of her autism - as undergoing Emotionally Unstable Personality Disorder (“EUPD’). Within the Trust we have now identified 134 patients that have both an Autism marker and a documented diagnosis of Emotionally Unstable Personality disorder (EUPD) which includes Borderline Personality Disorder (BPD). 21 June 2022 West Park Hospital Edward Pease Way Darlington Co Durham DL2 2TS Tel:

Email:

_____________________________________________________________________________________________________

We recognise that there may be diagnostic overlap and/or a greater likelihood of misdiagnosis, and it is also the case that the criteria for diagnosis of EUPD may no longer be met following the passage of time.

We have commenced examining these unique identifiable records with a view to:

1) understand the rationale and the validity of the diagnosis in these cases, in view of the potential for diagnostic confusion
2) determine if and how the diagnosis has been shared and made clear in the records
3) identify whether the diagnosis has been withdrawn and if so, how this has been communicated both to people and to services.
4) engage with the identified patient and clinical teams proactively and compassionately to arrange a diagnostic review, along with a review of reasonable adjustments to enable people to best access and benefit from services and tailored therapeutic options as appropriate. Further to the specific data and associated actions detailed above, we have also identified areas in which we clearly need to improve the quality of our data to support improvements in the care we provide. The oversight of the review of these cases will be held by the medical director who will ensure timely completion. This will be reported through the Trust’s quality governance routes.

Concern 3 - That attribution was not formally diagnosed, and not discussed with Zoe who found out by chance when looking at her records. She continued to be regarded and treated as if she was experiencing that condition and clinicians would not adapt to her distress caused by that attribution. There was inertia and excessive delay (to May 2020) in removing reference to EUPD which had been discounted in October 2018 all of which added to her distress. These actions and inactions destroyed her relationship with community mental health clinicians, and she did not trust them enough to try to restore any effective care relationship.

There is an expectation that all aspects of diagnosis and treatment will be discussed openly and transparently with people who use services and their carers wherever this is possible and appropriate (‘nothing about me without me’). This is a clear principle that the Trust expects clinicians to work towards and is also supported by ‘Our Clinical Journey’.

ment_data/file/216980/Liberating-the-NHS-No-decision-about-me-without-me- Government-response.pdf

Our new patient recording information system (CITO) will not only allow a greater clarity around active and discounted diagnoses but will importantly also support patient access to their own records improving mutual understanding and effective

_____________________________________________________________________________________________________

collaboration over both planning and delivery of care. This system will be introduced across all services in 2023. Part of the enabling work for the implementation of the system is the training that we are already providing to clinicians. This will strengthen clinicians’ ability to work collaboratively with patients and carers. This collaborative working will be monitored through caseload management and the clinical leadership team, but most critically by feedback from patients and carers about their experience of services and the effectiveness of services.

Concern 4 - She suffered repeated trauma derived from her autistic condition revisiting the causes of her distress which she re-experienced time and again with ‘film reel’ recollection. That trauma was again not understood.

The delivery of Trauma Informed Care is an integral part of ‘Our Clinical Journey’, (the Trusts Clinical Strategy) which has been developed with patients, carers clinicians and partners.

The Trust Board have received training in this essential work so that they are better informed, they remain committed to ensuring that it is embedded into clinical journey and subsequent underpinning practice to seek to understand patient needs. Across the Trust we are delivering autism awareness training to our clinical staff with a focus on how to make reasonable adjustments for autistic people so that they can access and benefit from services. Additionally, we are focussing on avoidance of trauma in this training so the potential to retraumatise autistic people is reduced. We humbly accept that if everybody (including staff) understood autism better, then trauma such as Zoe experienced would be reduced.

The impact of trauma is something that is increasingly understood and included in consideration of risk assessment, formulation, and care planning both locally and nationally however we need to further develop our staff understanding around how autistic people experience trauma. The Trust has developed ‘Our Clinical Journey’ in partnership with service users and carers. A trauma informed approach underpins this work. The trust is embedding training on trauma informed approaches for staff, to improve practice and the experiences of our service users and families.

Concern 5 - In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe.

As a Trust we do take very seriously our responsibility to ensure that our patients have the most robust multidisciplinary risk assessment facilitated by trained and competent staff. The safety summary is the Trust’s risk assessment tool, and a significant amount of work has been undertaken by the Trust in respect of improving the quality of risk assessments, across both inpatient and community settings to ensure that full and up to date information is included as part of the risk assessment. The harm minimisation training supports an individualised and needs-led approach to risk assessment, and this includes people with Autism and their specific needs. In order to drive this work forward, a Trust-wide quality improvement event was held in August 2021 the Trust Clinical Advisory Group commenced work in reviewing harm minimisation training. This work has been rolled out to all services in the community, including those teams involved in Miss Zaremba’s care. As a result of the work

_____________________________________________________________________________________________________

undertaken, the Trust developed the following initiatives to improve risk assessment and management.

Revised risk assessment tools have been produced including a new safety summary format, and a new safety plan template which directly link to the risk management plan. The revision to the format has simplified the process to avoid duplication and prompt concise, usable detail is recorded in relation to assessment of risk. This sits alongside the safety plan to capture individualised mitigation strategies linked to the risks identified in the summary document. To sit alongside the new documentation, a training programme was devised and went live in December 2020. It was delivered to all Registered Nurses in the team and the wider members of the MDT as a minimum. Within our risk assessment training we have incorporated and have trained staff that there is a higher risk of suicide of autistic people. Alongside this we have trained staff in facilitating personalised safety planning within both autism awareness training, individual supervision, and the trust suicide prevention strategy.

Additionally, we offer as a trust a full day Understanding Autism Training which has a focus on risk assessment for autistic people, diagnosis and associated risks and needs. This training is further consolidated through the offering of individual Autism supervision and consultation for clinical staff.

Concern 6 - TEWVs provision for care of autistic conditions were underdeveloped, reflecting national want of provision, to include: -

a) no multidisciplinary clinical assessment and formulation addressed her autism;

As a trust we provide a full day Understanding Autism training for clinical and non-clinical staff, which has a focus on risk assessment for autistic people and reflects diagnosis and associated risks and needs. The training is consolidated through the offering of individual Autism supervision and consultation for clinical staff.

At the time that Zoe was receiving services there was a lack of an autism informed formulation. Support for this for all teams across the Trust is available and utilised from the Trust-wide Autism Project who work with clinical staff to provide this level of autism informed formulation where required.

To assist staff in practically achieving this goal, additional measures have been introduced into the MDT process to ensure that, where a patient has a diagnosis of autism, their care, treatment, safety summary and safety plan all take that diagnosis into account and provide a comprehensive assessment of need. MDT formulation now includes patients and their advocates, wherever possible, in order to ensure honest and transparent communication when reaching a diagnosis.

To monitor compliance with this action, patients with an autism diagnosis will have their care plans and safety summaries checked and reviewed by the clinical team, with overall monitoring and responsibility for this lying with the General

_____________________________________________________________________________________________________

Manager and Clinical Director for the locality reporting through to the Medical Director.

b) no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all. Within the North Yorkshire teams, and across the trust supervision and support is being sought by the generic community teams on a case-by-case basis from clinical experts, who have an appropriate level of expertise to check and challenge the quality of care being provided. This is not only in relation to the specific care and treatment pathway for the individuals concerned, but also looks at the ability and understand of the team to provide reasonable adjustments when working with patients who have an autism diagnosis or who present with such traits. This sits alongside the training that is being delivered to local teams to increase knowledge and understanding of these issues. The level of uptake of this support is being closely monitored by the Autism Project Team and I can confirm that the teams are regularly making use of the knowledge and expertise of their specialist autism colleagues when working with this patient group. Additionally, as part of the Trusts Clinical Journey there is a commitment to increase personalised care planning which would include reasonable adjustments to meet individual needs.

c) no person centred (thus autism centred) holistic plan was developed to work in partnership with Zoe that took account of her autism, and her gender. As the evidence revealed one “cannot uncouple autism and other psychological/psychiatric experiences”. Instead, she withdrew from engagement with TEWV community health clinicians;

As a trust we offer a full day Understanding Autism training for both clinical and non-clinical staff, which has a focus on developing holistic plans of care for autistic people and reflects diagnosis and associated risks and needs. This is consolidated through the offering of individual autism supervision and consultation for clinical staff. The utilisation of supervision and consultation has increased over the last twelve months ensuring that care plans consider the needs of the autistic patient. Work is actively taking place to ensure that Autistic people’s needs can be reflected within the new care planning process.

However, this is a significant shift in practice and the trust is committed to ongoing embedding of evaluation and sustainability work to implement this change in practice.

d) there was no local provision within TEWV for specialist autism assessment and adapted psychological therapy. Commissioned providers of these essential cares were out with TEWV, requiring specific Funding Request (which was granted) for a course of assessment and therapy. Those providers did not offer statutory acute mental health services support, including out of hours/crisis support. TEWV did not provide what the commissioned providers were supplying. There was a want of effective communications between these ‘teams’ not least as patient data was not

_____________________________________________________________________________________________________

accessible by one to the others electronic records (patient consent permitting) and the fact of disengagement. There was a sense of ‘silo’ working, militating against partnership working, that encouraged unfavourably the undesirable “uncoupling’ of experience;

We acknowledge that commissioning arrangements which are currently led by The Clinical Commissioning Group, are complex and are provided by multiple organisations. The current position is that Adult Autism diagnostic services are commissioned through The York Retreat for York and North Yorkshire and are commissioned through TEWV for Durham and Tees Valley.

Autistic people who are accessing care within TEWV should receive reasonably adjusted mental health care, assessment and intervention including reasonably adjusted psychological intervention. However, specialist autism assessment and adapted autism specific psychological interventions require a specific Individual funding request for adults within York and North Yorkshire and this is usually delivered by the Retreat in York.

However, the landscape of commissioning is changing, and responsibilities are moving from Clinical Commissioning Groups to Integrated Care Systems. This brings significant opportunities to ensure that care delivery is more connected, and that partnership working is consistent across health providers as well as across social care and the voluntary sector.

We have learned from Zoe’s sad death and shared with our clinical teams the importance of communication with our partners, to ensure that patients’ needs are addressed in a more cohesive and person-centred manner.

We are committed to working alongside our partners now to ensure that communication is as timely and constructive to the meet the needs of our patients.

e) statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk that their male counterparts;

This evidence is built into the Trust’s ‘Understanding Autism’ training that is offered to all clinical and non-clinical staff. We have incorporated this statistical evidence within the Trust’s Suicide Prevention Strategy and our newly developed Clinical journey. The Trust wide Autism Project is represented on the Trust wide Suicide Prevention group ensuring that this increased risk, and an autism perspective has been incorporated into training and clinical guidance available to clinicians.

f) there was a clinical (but not measured) experience that more patients were presenting to the statutory service with autistic conditions and, it follows, more patients would be at risk of suicide;

_____________________________________________________________________________________________________

We are using the information that we shared in our response to your letter that you sent to myself dated 21st of April 2022 to further understand our patient demographics and clinical information to inform our strategic planning, training plan and clinical supervision emphasis to further support clinicians to deliver safe and effective care.

g) from 2016 to her death, Zoe was detained under s 2/3 MHA 1983 17 times and presented to A and E around 37 times with evident self-harm and apparent attempts on her life. She repeated high risk behaviours, she had no Care Co-ordinator nor effective Care Plan (which ought to have been in place) because she had not engaged with TEWV community services;

There has been a previous external review of Zoe’s care that considers this point and a subsequent action plan which was developed with Mrs Zaremba. These identified as an action that community mental health team leaders need to make flexible decisions based on an individual needs which may need to cross services and traditional ways of working. This may mean that it’s necessary to move away from usual ways of working in relation to allocation of a care coordinator or where care is delivered to ensure that all efforts are made to collaboratively meet patient needs.

This action plan is being monitored through trust governance processes.

h) Zoe lurched from crisis to crisis remaining at high risk to her own safety; she died because she could no longer cope with the sense of injustice caused by others that overwhelmed her thinking. She felt she was not being listened to by community mental health services. Her therapy from outside providers - which was proving helpful to her - was disrupted by COVID-19 limitations on face-to-face consultations; Both locally, including regional, but also nationally the evidence revealed a few serious issues that require urgent and immediate action to support autistic people well, not just from a sensory and environmental basis (which TEWV have started to improve albeit from a low baseline according to the evidence received). Urgent solutions are required to prevent future deaths of autistic patients especially with mental health needs; We have undertaken a wide consultation with patients, carers, staff, and external partners to co-create a more inclusive and collaborative service. This consultation took several forms including ‘Our Big Conversation’, which used online crowd- sourcing methodology, as well as programme boards to follow through the key service changes. We have a commitment to be working in equal partnership with people with lived experience and have now brought this directly to the heart of the organisation by appointing 2 Lived Experience Directors to the executive team. We are also expanding our peer support worker numbers.

We are adopting the nationally recommended changes to care planning to ensure that this is more collaborative and focussed on holistic needs with individualised recovery plans based on the DIALOG model. Increasingly, across the system, we

_____________________________________________________________________________________________________

are working with partners to integrate care, and this is supported in our area by the newly created Integrated Care System for Humber & North Yorkshire. We expect the above developments to significantly impact on the level of trust engendered by services including young people like Zoe.

I trust this provides you with assurance that the appropriate actions are and have been taken to address the concerns raised. However, should you require any further information please do not hesitate to contact me.

Dear Mr Broadbridge

Re: Zoe Zaremba (deceased)

Further to your letter of concern of 21st April 2022 and the subsequent regulation 28 report to prevent future deaths, I write to detail the data requested, the actions the Trust has taken and those that we continue to implement to address the concerns you identified during the inquest into Zoe Zaremba’s (Zoe’s) death. I would like to reassure you that as an organisation we have taken your concerns very seriously and for ease of reference I will address each of these in turn:

Firstly, with reference to your letter of concern:

1. No of Patients with ASD treated by the Trust when they had received their formal diagnosis Within the trust Electronic Care Record we have several Autism Markers which include, an ICD-10 Diagnosis of Autism, a referral reason of suspected/confirmed as Autistic and or referral action of ‘suspected as autistic’. Some patients may have both an autism diagnosis and an autism referral reason/referral action however the numbers are for unique patients in the trust.

The numbers are highlighted below: -

• 2676 patients who are currently open to Trust services have an Autism ICD- 10 diagnosis.
• 7291 patients who are currently open to Trust services have a referral reason of suspected/confirmed autism. Your Ref: 00931-2020

17 June 2022

West Park Hospital Edward Pease Way Darlington Co Durham DL2 2TS Tel: (01325) 552190 Email: www.tewv.nhs.uk

_____________________________________________________________________________________________________ Chief Executive: Brent Kilmurray Chairman: Paul Murphy (Interim)
• 979 patients who are currently open to Trust services have a referral action of suspected autism.
• The total number of patients open to Trust services with an Autism marker is thus 10116. Whilst this does not equate to the number with a validated diagnosis of autism, it represents approximately 17% of the total number of people open to the Trust.
• In North Yorkshire the commissioned service for assessment and support is external to the Trust and so the numbers are correspondingly less in terms of those waiting for an assessment. people with an Autism Marker.xlsx

For people who have received their diagnosis outside of our services, we will not have dates of their diagnosis.

Whether Sensory assessment and or therapy has occurred

Sensory assessment is not a standalone assessment. For individuals with autism there may be sensory components to their presentation. Assessment of this is part of a multidisciplinary assessment, and not undertaken by a specific profession or professional but by a range of potential professionals who are working with the individual to understand their specific needs. There will not be a ‘sensory assessment’ but for example there may be a sensory component to the way an individual enjoys their meals, there may be sensory components which influence an individual’s ability to interact with others. It is important to have a clear understanding of the individual’s presentation and it is important that reasonable adjustments are made around all their specific needs, some of which may have a sensory component. Any sensory integration assessment or therapy that an individual receives will be commissioned from services outside of TEWV.

2. No of patients who are female and their ages and age range Gender and Age range of people wit

The attachment details the age range and gender of people within TEWV services with an Autism marker. As you will see, there is a reasonably even distribution of males and females, with a small majority being male. This contrasts with historic data where the discrepancy was greater (and weighted towards males) and suggests a greater sensitivity within the trust to the presentation of autism in females.

_____________________________________________________________________________________________________ Chief Executive: Brent Kilmurray Chairman: Paul Murphy (Interim)
3. No of patients who have been diagnosed with EUPD/ BPD and whether this has been validated / Reviewed Within the Trust we have identified 134 patients that have both an Autism marker and a documented diagnosis of Emotionally Unstable Personality disorder (EUPD) which includes Borderline Personality Disorder (BPD).

We have begun to examine these unique identifiable records with a view to:

1) understanding the rationale and the validity of the diagnosis in these cases, in view of the potential for diagnostic confusion.
2) determining if and how the diagnosis has been shared and made clear in the records.
3) whether the diagnosis has been withdrawn and if so, how this has been communicated both to people and to services.
4) engaging with clinical teams proactively and acknowledge that this could possibly be a very significant and positively distressing process to arrange a diagnostic review for patients and therefore we need to take time to do this properly along with a review of reasonable adjustments and tailored therapeutic options as appropriate.
5) Learning from Zoe’s death and the subsequent inquiries has already been communicated by the patient safety team, and most recently the need to be validating or reviewing any diagnosis of EUPD has been highlighted by the medical director to a meeting of all senior medical staff (1st June 2022). Further to the specific data and associated actions detailed above, we have identified areas in which we can improve the quality of our data in order to support improvements in the care we provide. We have already improved how we record reasonable adjustments, and we have an opportunity to consider further enhancing our data recording around autism when we introduce a new data framework (CITO) later in the year.

Dear HM Assistant Coroner Broadbridge

Inquest touching upon the death of Zoe Zaremba Regulation 28 Report

I am in receipt of the Regulation 28 Report relating to the inquest touching upon the death of Zoe Zaremba. Please could I firstly take the opportunity to pass my condolences to Zoe's family, particularly to her mother who has met with the CCG both before and subsequent to the inquest proceedings. Thank you for taking the time to draw your concerns to my attention.

This response is addressed as coming from NHS Humber and North Yorkshire Integrated Care Board. On 1 July 2022 CCGs ceased to exist and were replaced with Integrated Care Boards. I can see from the evidence provided by Anne Marshall that there was a view given that the relevant CCG for this inquest was North Yorkshire and York CCG; to clarify, there was no such CCG. The relevant CCG for the purposes of the inquest was NHS North Yorkshire CCG as you identified in your Regulation 28 report. It is right to say that NHS Vale of York CCG also commissioned services from Tees Esk and Wear Valley NHS Foundation Trust ("TEWV") however this was through a separate and different contract (albeit with some similarities).

When the ICB was established on 1 July 2022 the contracts in existence in CCGs were novated to the ICB and therefore the previous contract between NHS North Yorkshire CCG and TEWV novated to be between NHS Humber and North Yorkshire ICB and TEWV.

Having reviewed the evidence which was heard at the inquest and the documents which your office has helpfully supplied us with I would just wish to observe that the CCG would have welcomed the opportunity to support you with your investigation and attended the inquest with interested person status. Please could consideration be given to this in the future where there may be questions about commissioned services. I believe that our legal team have written to Mr Heath, Senior Coroner for

1 Grimbald Crag Court St James Business Park Knaresborough HG5 8QB

York and North Yorkshire, separately providing contact details and reiterating a willingness to support any investigations that you may have.

I have responded specifically to two elements of the Regulation 28 report as I believe these are the elements which you are specifically addressing to the commissioners of services. These 2 sections are 6D and 6H:-

'6D there was no local provision within TEWV for specialist autism assessment and adapted psychological therapy. Commissioned providers of these essential cares were outwith TEWV, requiring specific Funding Request (which was granted) for a course of assessment and therapy. Those providers did not offer statutory acute mental health services support, including out of hours/crisis support. TEWV did not provide what the commissioned providers were supplying. There was a want of effective communications between these 'teams' not least as patient data was not accessible by one to the others electronic records (patient consent permitting) and the fact of disengagement. There was a sense of 'silo' working, militating against partnership working, that encouraged unfavourably the undesirable 'uncoupling' of experiences';

NHS North Yorkshire CCG commissioned the Retreat (Tuke) Centre to provide an assessment and diagnosis service for autism spectrum disorder. It does provide some post diagnostic support and where a need for additional therapy is identified, can be commissioned separately to provide some specific therapies as happened in Zoe's case.

This is therapy which is beyond that which TEWV can provide as the primary mental health provider. That does not change the expectation that TEWV be in a position to make appropriate adjustments to their mental health support for those with any neuro development diagnosis. By this we mean that we would expect TEWV to be in a position to support those with a mental health condition even where they have a diagnosis of autism spectrum disorder however it is recognised by the CCG/ICB that there may be cases where there is additional specialist input required. This is when IFR requests are made. The CCG/ICB accepts that this is becoming more frequent and the reasons for this are not clear but are sufficient for the CCG/ICB to be considering the commissioned pathway for this type of therapy.

Although not specifically referred to within the Regulation 28 it is clear from the evidence which we have reviewed that one of the concerns you had was whether or not the service available to patients in Zoe's position would have been better if this had been 'in housed' rather than what appears to be an arbitrary divide of service

1 Grimbald Crag Court St James Business Park Knaresborough HG5 8QB

delivery between the Retreat (Tuke) Centre and TEWV. I trust that the explanation above addresses those concerns and provides an explanation as to why there are additional services provided by other organisations. The CCG/ICB commissions services based on a number of factors, understanding of population need is one factor and value for money is another; these factors are sometimes competing. The CCG/ICB reviews decisions it makes on a regular basis (within contracting requirements) and addresses concerns as I have already described (reviewing the commissioned service for specialist autism therapy for example)

To be clear, the CCG commissioned TEWV to provide mental health services for the population regardless of whether someone also has a diagnosis of a neuro developmental disorder/condition. The ICB have now had that contract novated to them upon the establishment of the ICB on 1 July 2022.

The adapted psychological therapy that is referred to in the Regulation 28 as being commissioned through specific Funding Requests (also referred to as Individual Funding Requests) would be upon the identification of services required in addition to the core services provided by TEWV. The commissioning expectation is that TEWV would make reasonable adjustments to the core services to provide appropriate care and support for people presenting with a mental health issue even where that sits alongside a diagnosis of autism. The request for additional services can come from TEWV, a GP or from the Retreat (Tuke) Centre itself depending upon its previous interaction and contact with a patient. This does cause the ICB some concern about conflict of interests where there is an incentive for a referral to be made (ie generating business for an organisation through the referral process). This is the reason the referrals are scrutinised and considered on their own merits before approval is given.

Whilst the CCG/ICB recognises the concern about effective communication between the Retreat (Tuke) Centre and TEWV; the CCG/ICB also observes that this is the case in a number of sections of healthcare, and the issue of patient consent to sharing information is often problematic in cases like this. That said, the Retreat (Tuke) Centre were not providing core services to Zoe; this falls to TEWV and therefore the CCG would have expected TEWV to involve the Retreat (Tuke) Centre in any MDT or planning where this was deemed to be necessary to support Zoe's care. There is certainly nothing within the commissioning arrangements which would prevent this contact and MDT approach to care. Whether Zoe would have agreed to such an approach given her views about TEWV; and if she had refused how that should have been managed from a clinical risk perspective, are not matters that the CCG can comment on with the information available to us at this time.

1 Grimbald Crag Court St James Business Park Knaresborough HG5 8QB

The CCG/ICB are aware; from reviewing the evidence from the inquest and from discussions with TEWV that there are communication issues internally and externally which need to be resolved for the benefit of the patient. This appears to go beyond incompatibility of IT systems (for example within the inquest there is reference to the autism service provided to other geographical parts of TEWV but not being available within the North Yorkshire part of the organisation). Both TEWV and the ICB are committed to working closely to resolve this. It is anticipated that ultimately the establishment and development of Provider Collaboratives within the ICB will support with these type of issues in the future.

'6H Zoe lurched from crisis to crisis remaining at high risk to her own safety; she died because she could no longer cope with the sense of injustice caused by others that overwhelmed her thinking. She felt she was not being listened to be community mental health services. Her therapy from outside providers – which was proving helpful to her – was disrupted by COVID-19 limitations on face to face consultations;

Unfortunately the disruption to services caused by the Covid-19 pandemic was out of the control of the CCGs, TEWV and the Retreat (Tuke) Centre. That said, as the Retreat (Tuke) Centre was not providing core services to Zoe; there would be an expectation that she would be kept safe utilising core mental health services provided by TEWV. This should have meant that Zoe's core mental health care would have been provided by TEWV and risk assessed by them however as TEWV had adapted their model of care delivery for Zoe it may be that this was not appreciated in the usual practice of community mental health services.

Actions which the CCG/ICB is taking moving forward:

The CCG/ICB is heavily engaged in the national consultations on Liberty Protection Safeguards and the Mental Health Act presently. Both of these represent key policy changes for those with autism spectrum disorder. The CCG/ICB have also been working closely with TEWV to improve and support learning from SIs and other incidents and share that learning more widely. This includes information sharing between TEWV and the ICB where there are concerns about capacity and capability.

The CCG/ICB has audited the referrals for individual funding which it has received within the last 24 months and there is a trend for requests for therapy for those with autism spectrum disorder which appears to highlight a need for further consideration of the commissioned service. The CCG/ICB is clear that TEWV are the commissioned mental health provider of services and as such; even where a patient

1 Grimbald Crag Court St James Business Park Knaresborough HG5 8QB

has a dual diagnosis of autism spectrum disorder and some other mental health condition; TEWV should be in a position to deliver adjusted services to support their needs. The level of requests for additional therapy for those with autism diagnosis suggests that this is not proving to be fully effective at this time. The CCG/ICB is therefore working on a series of learning events with both TEWV and service users at present whilst considering how services ought to be commissioned and delivered moving forwards, whilst also looking at more immediate and interim arrangements based on the findings in the regulation 28 notice and from direct discussions and queries with service users.

The CCG/ICB work on contracting cycles and therefore there are contractual requirements which prevent significant changes to the award of or specification of contracts mid way through. That said, where there are concerns about the delivery of contracts the CCG/ICB will manage these through contract management mechanisms and that is the basis of the ongoing discussions with TEWV and with the Retreat (Tuke) Centre following the issuing of this Regulation 28.

If I can assist you any further please do not hesitate to contact me via hnyicb- voy.legal@nhs.net

Dear Mr Broadbridge, Re: Regulation 28 Report to Prevent Future Deaths – Zoe Emma Zaremba who died on 21 June 2020. Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 25 April 2022 concerning the death of Zoe Emma Zaremba on 21 June 2020. I would like to express my deep condolences to Zoe’s family. Following the inquest, you raised concerns in your Report regarding the care she received following her diagnosis of Asperger’s Syndrome and during her complex mental health condition. We can see that this case raises very concerning issues about gaps in care for a vulnerable autistic young woman suffering with complex mental health. The report highlights how important it is that, when autistic people access mental health services, there is high quality care tailored to individual needs. Care should be reasonably adjusted and delivered by staff who have knowledge and awareness of autism, including an understanding of how best to respond to women with a history of trauma. In the context of the NHS Long Term Plan, initiatives have been undertaken by NHS England that are of relevance to the issues raised following Zoe’s death. This includes one off funding made in 2021/2022 for future improvements, to include:
• £7 million for local areas to test ways to improve the quality of autism diagnostic pathways. This funding supported a wide range of projects that tested new ways to support people and their families through the autism diagnostic pathway (39 projects for children and young people and 25 projects for adults: a total of 64 one- off projects). The projects are still underway, and outcomes are expected to be reported to the programme later this year and into early 2023. We will use the learning from these projects along with any available research to inform guidance/ support for local systems on how to improve the quality and access to autism diagnostic assessments including pre and post diagnostic support
• £1.5 million supported autism training for staff working in adult mental health inpatient settings.

2
• £4 million for a range of projects across the country to improve the sensory environment of mental health hospitals. There were 40 projects across the country aimed at environmental changes to accommodate sensory needs of autistic people in mental health inpatient settings. The projects delivered changes to the physical environment and/or training for staff on the sensory needs of autistic people and/ or learning from the experiences of patients.
• We are developing an updated Care (Education) and Treatment Review (C(E)TR) policy. The new published policy will include a requirement for people with a learning disability and autistic people in a mental health hospital to have a C(E)TR take place where there is a proposal to remove a diagnosis of autism or learning disability for a person. The University of Reading were also been asked to develop a sensory assessment tool for use in mental health hospitals and we commissioned the National Development Team for Inclusion (NDTi) to develop Ten Sensory Friendly Ward Principles as part of the “It’s Not Rocket Science” work; see here for details. The Ten Principles are focused on the, often quite small, changes needed to ward environments to improve the sensory environment for autistic people. The principles were used to inform the development and delivery of the sensory projects programme in 2021/2022 so that projects had to demonstrate how the principles were used. We are currently developing a sensory friendly resource pack for health Trusts and Integrated Care Systems (ICSs). We have also reviewed the Regulation 28 Report response from Tees, Esk and Wear Valleys NHS Foundation Trust (TEWV), who were responsible for Zoe’s care, outlining the actions they are implementing following the concerns raised by Zoe’s case. We note the changes and improvement to training, risk assessment and holistic care, as well as the commitment to review all of their patients currently with an Autism marker and a diagnosis of Emotionally Unstable Personality Disorder (EUPD). We also welcome the intention for better collaboration and communication between mental health services as a result of the changes to the commissioning model supported by the newly created Integrated Care System for Humber & North Yorkshire. We hope this provides further assurance around the steps being taken, following the concerns raised around Zoe’s care in the Report. 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.

Dear Mr Broadbridge,

Thank you for your letter of 25 April 2022 to the Minister of State for Care and Mental Health at the time, Gillian Keegan, about the death of Zoe Zaremba. I am replying as Minister with responsibility for Mental Health and thank you for the additional time allowed.

Firstly, I would like to say how saddened I was to read of the circumstances of Ms Zaremba’s death, and I offer my sincere condolences to her family and loved ones. The circumstances your report describes are very concerning and I am grateful to you for bringing these matters to my attention.

The Government is committed to suicide prevention and awareness raising and we are taking actions which aim to improve support for autistic people and address the issues raised following Ms Zaremba’s Death. I have described these below.

We know that having the right workforce with the right skills and training to support autistic people is crucial in ensuring a person receives safe and appropriate care and support. This is why, from 1 July 2022, registered providers are required to ensure their staff receive specific training on learning disability and autism appropriate to their role.

There are also initiatives underway in NHS England to ensure autistic people receive the right care and support which they have described in their response. This includes investing £1.5 million into the development and trialling of autism training for staff working in adult inpatient mental health settings by March 2023.

The Government recognises that to improve autistic people’s experiences in hospital they may need to access adjustments, but that currently professionals cannot always identify that someone is autistic or what their needs might be. That is why, as part of the NHS Long Term Plan’s priority focus on autism and learning disability, NHS England are committed to develop a digital flag by 2023/2024. This will ensure that staff across health and social care will be aware that an autistic person needs reasonable adjustments for them to access services. This flag is currently being piloted across 13 early adopter regional sites before it becomes more widely available.

Some people may have sensory needs, which are important to consider as part of creating the right environment for their care. NHSE commissioned the National Development Team for inclusion (NDTi) to develop 10 principles 1 that can be used to increase awareness and provision of environments suited to people’s sensory needs.

You raised the importance of community provision. In 2022/2023, we are investing £70 million to prevent avoidable admissions and improve community support for autistic people and people with a learning disability. This includes £40 million to improve the capacity and capability of 7-day specialist multidisciplinary and crisis support for autistic people and people with a learning disability in every area of the country. Additionally, £30 million has been committed for keyworker services for autistic children and young people and children and young people with a learning disability with the most complex needs at risk of being admitted to mental health settings or who are inpatients.

In July 2022 we published the Building the Right Support Action Plan to help us make further progress on commitments that will enable autistic people and people with learning disability to lead ordinary lives in their community and reduce reliance on mental health inpatient care.

Furthermore, on 27 June 2022, we published the draft Mental Health Bill, which includes our proposed Mental Health Act reforms to help improve support for autistic people and people with a learning disability and end inappropriate detentions. We will bring this before the House as soon as Parliamentary time allows.

1 https://www.ndti.org.uk/resources/publication/its-not-rocket-science

As part of our proposed Mental Health Act reforms, a person with a learning disability or autistic person will no longer be able to be detained for treatment under section 3 of the Act unless they have a co-occurring mental health condition that requires treatment in hospital. There will also be duties on commissioners to understand the risk of crisis at an individual level and ensure an adequate supply of community services for people with a learning disability and autistic people who are at risk of admission under part II of the Act. Recommendations from Care (Education) and Treatment Reviews (C(E)TRs), will be placed on a statutory footing, for certain detained patients, meaning that they must be taken into account as part of someone’s care and treatment. This will build upon the work on CETRs described in NHSE’s response.

More generally, we launched a 12-week public call for evidence on what can be done across government in the longer term to support mental health, wellbeing and suicide prevention. In the discussion paper published alongside the call for evidence, we recognise that autistic people and people with learning disabilities experience worse mental health than the general population. This closed on 7 July. We received submissions from 5,273 respondents representing a broad range of stakeholders from across England and we are currently considering these.

You may also wish to know that, on 21 July 2021, we published the refreshed National Autism Strategy, which aims to improve the lives of autistic people by addressing health inequalities and improving access to public services.2 Actions within the strategy include improving health and care professionals’ understanding of autism. We remain committed to implementing the strategy and are considering the most effective mechanisms to achieve this, including empowering local systems to deliver improved outcomes for autistic people.

Furthermore, as of January 2022, the ‘Learning from lives and deaths – People with a learning disability and autistic people’ (LeDeR) programme includes autistic people. Taking the learning from this programme will help us ensure people are better supported and cared for in future and that we can take the necessary steps to prevent future deaths from occurring.

Finally, on 2 November 2022 NHS England published the reports of the investigations it had commissioned into three deaths in the child and adolescent mental health services run by the Tees, Esk and Wear Valleys NHS Foundation Trust. These highlighted multiple failings in the care the Trust provided.

I understand the Trust has accepted in full those recommendations in the reports that are for the Trust. The Trust has a significant improvement programme underway and is working with NHS England to improve standards in the care it provides, including working with the local Integrated Care Board to assess where additional targeted activity could lead to further improvements.

2 https://www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and- adults-2021-to-2026/the-national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026

NHS England has also commissioned a system-wide investigation into the safety and quality of CAMHS services at the Trust which is due to be published early in 2023.

Finally, in light of these tragic losses of life at the Trust and the subsequent Urgent Question raised in response in the House of Commons, we are considering what more can be done to improve the quality and safety of mental health inpatient care and will make an announcement in due course.

I hope this response is helpful. Improving the support that autistic people receive and preventing such circumstances in future is essential. Thank you for bringing these concerns to my attention.