PFD report

Zoe Emma ZAREMBA · Prevention of Future Deaths report

Pin Get email alerts Request correction

Issued 25 Apr 2022•North Yorkshire and York including North Yorkshire Western District

Report record

Published report and response evidence

This page connects the concerns raised in this report with statements found in recipients’ published responses. A link shows a clear evidence connection; it does not assign responsibility.

View original report
Concerns
10

Raised in this report

Recipients
4

Named on the report

Responses found
4

Of 4 recipients

Stated actions
49

Described in responses

Source document

Full report text

This is the full text from the original published report.

Open published report

Concerns and recipient responses

Select any concern, action or position to view the source wording.

Report evidence summary

Concerns raised10

  1. Lack of multidisciplinary clinical assessment and formulation addressing autism
    Part of recurring concern: Failure to account for autistic presentation in mental health assessment and care
  2. Gap in acute and crisis mental health support alongside commissioned autism care
    Part of recurring concern: Inadequate 24-hour mental health crisis support
  3. Lack of local specialist autism assessment and adapted psychological therapy
    Part of recurring concern: Failure to account for autistic presentation in mental health assessment and carePart of recurring concern: Unreliable access to timely autism assessment
Responses linked to these concerns

Each statement is shown once, even when linked to more than one concern.

Actions described in response An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised.28

  1. Action

    Work with TEWV to resolve internal and external communication issues affecting patient care.

    Stated by NHS Humber and North Yorkshire Integrated Care BoardStated plannedThe respondent said that this action was planned when they made their response on 27 April 2022.
  2. Action

    Audit individual funding referrals to identify demand for autism-related therapy and inform service planning.

    Stated by NHS Humber and North Yorkshire Integrated Care BoardStated completedThe respondent said that this action was complete when they made their response on 27 April 2022.
  3. Action

    Hold learning events with TEWV and service users to inform autism-related therapy commissioning and delivery.

    Stated by NHS Humber and North Yorkshire Integrated Care BoardStated in progressThe respondent said that this action was in progress when they made their response on 27 April 2022.

Respondent positions A position is what a recipient says about a concern when it does not describe a specific action.5

  1. Position

    Pandemic-related disruption to services was outside the control of the CCGs, TEWV and the Retreat Centre.

    Stated by NHS Humber and North Yorkshire Integrated Care BoardUnable to actThe respondent said that a constraint prevented them from taking the relevant action.

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Lack of multidisciplinary clinical assessment and formulation addressing autism

Wider context from the report

“The evidence indicated: 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. 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”). 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. 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. 5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe. 6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:- A no multidisciplinary clinical assessment and formulation addressed her autism; B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all; 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. D 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 commissioning 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; E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts; 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; G from 2016 to her death, Zoe was detained under ss 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; 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 number of 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. ”

Is this part of a recurring concern?

Yes — Failure to account for autistic presentation in mental health assessment and care.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Gap in acute and crisis mental health support alongside commissioned autism care

Wider context from the report

“The evidence indicated: 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. 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”). 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. 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. 5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe. 6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:- A no multidisciplinary clinical assessment and formulation addressed her autism; B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all; 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. D 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 commissioning 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; E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts; 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; G from 2016 to her death, Zoe was detained under ss 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; 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 number of 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. ”

Is this part of a recurring concern?

Yes — Inadequate 24-hour mental health crisis support.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Lack of local specialist autism assessment and adapted psychological therapy

Wider context from the report

“The evidence indicated: 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. 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”). 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. 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. 5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe. 6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:- A no multidisciplinary clinical assessment and formulation addressed her autism; B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all; 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. D 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 commissioning 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; E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts; 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; G from 2016 to her death, Zoe was detained under ss 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; 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 number of 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. ”

Is this part of a recurring concern?

Yes — Failure to account for autistic presentation in mental health assessment and care; Unreliable access to timely autism assessment.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to understand autism-related trauma in risk assessment

Wider context from the report

“The evidence indicated: 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. 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”). 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. 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. 5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe. 6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:- A no multidisciplinary clinical assessment and formulation addressed her autism; B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all; 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. D 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 commissioning 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; E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts; 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; G from 2016 to her death, Zoe was detained under ss 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; 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 number of 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. ”

Is this part of a recurring concern?

Yes — Failure to account for autistic presentation in mental health assessment and care.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to respond promptly to distress and remove discounted diagnostic references

Wider context from the report

“The evidence indicated: 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. 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”). 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. 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. 5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe. 6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:- A no multidisciplinary clinical assessment and formulation addressed her autism; B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all; 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. D 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 commissioning 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; E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts; 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; G from 2016 to her death, Zoe was detained under ss 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; 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 number of 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. ”

Is this part of a recurring concern?

Yes — Failure to account for autistic presentation in mental health assessment and care.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure of communication and shared information across autism and mental health teams

Wider context from the report

“The evidence indicated: 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. 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”). 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. 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. 5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe. 6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:- A no multidisciplinary clinical assessment and formulation addressed her autism; B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all; 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. D 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 commissioning 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; E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts; 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; G from 2016 to her death, Zoe was detained under ss 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; 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 number of 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. ”

Is this part of a recurring concern?

Yes — Failure to integrate mental health services across care settings; Unreliable communication within and between community mental-health teams; Unreliable inter-agency information sharing for coordinated care; Unsafe coordination of shared care.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to make timely reasonable sensory and environmental adjustments

Wider context from the report

“The evidence indicated: 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. 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”). 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. 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. 5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe. 6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:- A no multidisciplinary clinical assessment and formulation addressed her autism; B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all; 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. D 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 commissioning 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; E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts; 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; G from 2016 to her death, Zoe was detained under ss 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; 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 number of 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. ”

Is this part of a recurring concern?

Yes — Failure to account for autistic presentation in mental health assessment and care; Failure to provide required reasonable adjustments for patients with disabilities.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to provide a care coordinator and effective care plan

Wider context from the report

“The evidence indicated: 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. 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”). 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. 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. 5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe. 6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:- A no multidisciplinary clinical assessment and formulation addressed her autism; B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all; 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. D 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 commissioning 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; E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts; 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; G from 2016 to her death, Zoe was detained under ss 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; 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 number of 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. ”

Is this part of a recurring concern?

Yes — Failure to reliably develop and review risk-reduction plans.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Lack of person-centred autism-informed holistic care planning

Wider context from the report

“The evidence indicated: 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. 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”). 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. 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. 5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe. 6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:- A no multidisciplinary clinical assessment and formulation addressed her autism; B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all; 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. D 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 commissioning 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; E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts; 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; G from 2016 to her death, Zoe was detained under ss 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; 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 number of 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. ”

Is this part of a recurring concern?

Yes — Failure to account for autistic presentation in mental health assessment and care; Failure to provide patient-centred care and decisions.

Open source report

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to avoid attributing an undiagnosed personality disorder to an autistic patient

Wider context from the report

“The evidence indicated: 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. 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”). 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. 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. 5 In short, her autism (and thus risk assessment) was misunderstood by the clinicians tasked to keep her safe. 6 TEWV’s provision for cares of autistic conditions were underdeveloped, reflecting national want of provision, to include:- A no multidisciplinary clinical assessment and formulation addressed her autism; B no reasonable adjustments were then made in terms of her sensory and environmental needs in any timely fashion, or at all; 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. D 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 commissioning 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; E statistical evidence indicated that autistic individuals are more at risk of suicide than those with no neurodevelopmental condition, and females at greater risk than their male counterparts; 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; G from 2016 to her death, Zoe was detained under ss 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; 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 number of 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. ”

Is this part of a recurring concern?

Yes — Failure to account for autistic presentation in mental health assessment and care; Inadequate competence in mental health assessment.

Open source report

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Work with TEWV to resolve internal and external communication issues affecting patient care.

Verbatim wording from the response

“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.”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 4 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Audit individual funding referrals to identify demand for autism-related therapy and inform service planning.

Verbatim wording from the response

“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”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 4 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Hold learning events with TEWV and service users to inform autism-related therapy commissioning and delivery.

Verbatim wording from the response

“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.”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 5 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Examine immediate and interim arrangements for autism-related therapy in light of the Regulation 28 notice and service-user discussions.

Verbatim wording from the response

“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.”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 5 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Consider how autism-related services should be commissioned and delivered in future.

Verbatim wording from the response

“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.”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 5 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Examine patients with autism and EUPD/BPD diagnoses to assess diagnostic validity, communication, withdrawal, reasonable adjustments and tailored therapeutic options.

Verbatim wording from the response

“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).”

Source location

Response from TEWV
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Communicate learning from Zoe’s death and subsequent inquiries, including the need to validate or review EUPD diagnoses, to relevant clinical and senior medical staff.

Verbatim wording from the response

“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).”

Source location

Response from TEWV
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Examine records for diagnostic validity, communication, withdrawal, reasonable adjustments and tailored therapeutic options for patients with autism and EUPD diagnoses.

Verbatim wording from the response

“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).”

Source location

Reponse from Tees Esk and Wear Valleys NHS Foundation Trust (17 June)
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Communicate learning from Zoe’s death and inquiries, including the need to validate or review EUPD diagnoses, to clinical and senior medical staff.

Verbatim wording from the response

“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).”

Source location

Reponse from Tees Esk and Wear Valleys NHS Foundation Trust (17 June)
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Deliver autism-awareness and trauma-informed training addressing reasonable adjustments, autism-related trauma and staff understanding of autistic people’s needs.

Verbatim wording from the response

“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 traumatise autistic people is reduced. We humbly accept that if everybody (including staff) understood autism better, then trauma such as Zoe experienced would be reduced.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Review 134 patients’ autism and EUPD diagnoses, communications, withdrawals, reasonable adjustments and treatment options.

Verbatim wording from the response

“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).”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 1 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Obtain specialist autism support for community teams to review care quality and reasonable adjustments, while monitoring uptake.

Verbatim wording from the response

“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 understanding 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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 5 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Share learning with clinical teams and work with external partners to improve timely, constructive communication and cohesive patient care.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 6 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Implement revised risk-assessment and safety-planning tools with associated multidisciplinary training, including autism-specific suicide-risk content.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Adopt nationally recommended collaborative care planning using holistic, individualised recovery plans based on the DIALOG model.

Verbatim wording from the response

“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 ████████ ████████”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 7 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Monitor the action plan requiring flexible, cross-service decisions to meet individual patient needs.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 7 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Require autism-informed care, treatment, safety summaries and safety plans within multidisciplinary team processes, including patient and advocate involvement where possible.

Verbatim wording from the response

“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 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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 4 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Provide autism training, supervision and consultation for clinical and non-clinical staff on risk, diagnosis, needs and holistic care planning.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 4 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Introduce the CITO recording system across all services to clarify diagnoses and support patient record access.

Verbatim wording from the response

“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”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Develop and embed an autism-informed care-planning process with evaluation and sustainability work for person-centred holistic plans.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 5 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Implement the National Autism Strategy while considering effective mechanisms, including empowering local systems to improve outcomes.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Require registered providers to ensure staff receive role-appropriate learning disability and autism training.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 1 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Invest £40 million to improve seven-day specialist multidisciplinary and crisis support capacity for autistic people and people with learning disabilities.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Use project learning and research to inform guidance and support for improved autism diagnostic assessments.

Verbatim wording from the response

“• £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”

Source location

Response from NHS England
Page 1 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Fund projects improving sensory environments in mental health hospitals through environmental changes, staff training and patient-experience learning.

Verbatim wording from the response

“• £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.”

Source location

Response from NHS England
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Fund autism training for staff working in adult mental health inpatient settings.

Verbatim wording from the response

“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:”

Source location

Response from NHS England
Page 1 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Support projects testing improvements to autism diagnostic pathways.

Verbatim wording from the response

“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:”

Source location

Response from NHS England
Page 1 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Develop a sensory-friendly resource pack for health trusts and Integrated Care Systems.

Verbatim wording from the response

“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).”

Source location

Response from NHS England
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Pandemic-related disruption to services was outside the control of the CCGs, TEWV and the Retreat Centre.

Verbatim wording from the response

“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.”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 4 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

TEWV is responsible for delivering core mental health care and making reasonable adjustments for patients with autism.

Verbatim wording from the response

“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 commissioning pathway for this type of therapy.”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

In North Yorkshire, autism assessment and support are commissioned from services outside the Trust.

Verbatim wording from the response

“• 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.”

Source location

Response from TEWV
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Autism assessment and support in North Yorkshire are commissioned from services external to the Trust.

Verbatim wording from the response

“• 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.”

Source location

Reponse from Tees Esk and Wear Valleys NHS Foundation Trust (17 June)
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Specialist autism assessment and adapted psychological interventions require individual funding and are usually delivered by The Retreat.

Verbatim wording from the response

“We acknowledge that commissioning arrangements which are currently led by The Clinical Commissioning Group, are complex and 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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 6 · response
Published 27 April 2022

Open published response

Other statements in published responses

These actions and other statements could not be clearly connected to one concern in this report.

Recipient-stated actions An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised.21

  1. 1

    Manage concerns about contract delivery through contract-management mechanisms and ongoing discussions with TEWV and the Retreat Centre.

    Stated by NHS Humber and North Yorkshire Integrated Care BoardStated plannedThe respondent said that this action was planned when they made their response on 27 April 2022.
  2. 2

    Engage in national consultations on Liberty Protection Safeguards and Mental Health Act policy changes affecting autistic people.

    Stated by NHS Humber and North Yorkshire Integrated Care BoardStated in progressThe respondent said that this action was in progress when they made their response on 27 April 2022.
  3. 3

    Work with TEWV to improve learning from serious incidents and share relevant learning, including capacity and capability concerns.

    Stated by NHS Humber and North Yorkshire Integrated Care BoardStated in progressThe respondent said that this action was in progress when they made their response on 27 April 2022.
  4. 4

    Improve recording of reasonable adjustments in Trust records.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated completedThe respondent said that this action was complete when they made their response on 27 April 2022.
  5. 5

    Improve recording of reasonable adjustments in Trust records.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated completedThe respondent said that this action was complete when they made their response on 27 April 2022.
  6. 6

    Work with partners to integrate care across health, social-care and voluntary-sector services.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated in progressThe respondent said that this action was in progress when they made their response on 27 April 2022.
  7. 7

    Provide clinician training enabling implementation of CITO and collaborative work with patients and carers.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated in progressThe respondent said that this action was in progress when they made their response on 27 April 2022.
  8. 8

    Complete consultation with patients, carers, staff and partners to co-create a more inclusive and collaborative service.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated completedThe respondent said that this action was complete when they made their response on 27 April 2022.
  9. 9

    Incorporate elevated suicide risk among autistic people into training, suicide-prevention strategy and clinical guidance.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated completedThe respondent said that this action was complete when they made their response on 27 April 2022.
  10. 10

    Use demographic and clinical information to inform strategic planning, training plans and clinical-supervision priorities.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated in progressThe respondent said that this action was in progress when they made their response on 27 April 2022.
  11. 11

    Appoint two lived-experience directors to the executive team.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated completedThe respondent said that this action was complete when they made their response on 27 April 2022.
  12. 12

    Expand peer-support worker numbers.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustStated in progressThe respondent said that this action was in progress when they made their response on 27 April 2022.
  13. 13

    Publish the Building the Right Support Action Plan to reduce reliance on mental health inpatient care and support community living.

    Stated by Department of Health and Social CareStated completedThe respondent said that this action was complete when they made their response on 27 April 2022.
  14. 14

    Publish the refreshed National Autism Strategy addressing health inequalities and access to public services.

    Stated by Department of Health and Social CareStated completedThe respondent said that this action was complete when they made their response on 27 April 2022.
  15. 15

    Consider further measures to improve the quality and safety of mental health inpatient care and announce the outcome.

    Stated by Department of Health and Social CareStated in progressThe respondent said that this action was in progress when they made their response on 27 April 2022.
  16. 16

    Bring the draft Mental Health Bill and proposed reforms before Parliament as soon as parliamentary time allows.

    Stated by Department of Health and Social CareStated plannedThe respondent said that this action was planned when they made their response on 27 April 2022.
  17. 17

    Launch a public call for evidence on longer-term government action supporting mental health, wellbeing and suicide prevention.

    Stated by Department of Health and Social CareStated completedThe respondent said that this action was complete when they made their response on 27 April 2022.
  18. 18

    Commit £30 million to keyworker services for children and young people with complex needs at risk of admission or inpatient care.

    Stated by Department of Health and Social CareStated plannedThe respondent said that this action was planned when they made their response on 27 April 2022.
  19. 19

    Consider submissions from the public call for evidence to inform longer-term mental health, wellbeing and suicide-prevention action.

    Stated by Department of Health and Social CareStated in progressThe respondent said that this action was in progress when they made their response on 27 April 2022.
  20. 20

    Include autistic people in the Learning from lives and deaths programme to generate learning and support prevention of future deaths.

    Stated by Department of Health and Social CareStated completedThe respondent said that this action was complete when they made their response on 27 April 2022.
  21. 21

    Develop an updated Care (Education) and Treatment Review policy requiring reviews before proposed removal of autism or learning-disability diagnoses in mental health hospitals.

    Stated by NHS EnglandStated in progressThe respondent said that this action was in progress when they made their response on 27 April 2022.

Recipient positions A position is what a recipient says about a concern when they do not describe a specific action.4

  1. 1

    Contractual requirements prevent significant changes to contract awards or specifications during contracting cycles.

    Stated by NHS Humber and North Yorkshire Integrated Care BoardUnable to actThe respondent said that a constraint prevented them from taking the relevant action.
  2. 2

    Sensory integration assessment or therapy is commissioned from services outside the Trust.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
  3. 3

    Sensory integration assessment or therapy is commissioned from services outside the Trust.

    Stated by Tees, Esk and Wear Valleys NHS Foundation TrustRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.
  4. 4

    The Trust is responsible for implementing the investigation recommendations assigned to it and is undertaking an improvement programme.

    Stated by Department of Health and Social CareRedirects responsibilityThe respondent said that another organisation was responsible for deciding or taking action.

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Manage concerns about contract delivery through contract-management mechanisms and ongoing discussions with TEWV and the Retreat Centre.

Verbatim wording from the response

“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.”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 5 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Engage in national consultations on Liberty Protection Safeguards and Mental Health Act policy changes affecting autistic people.

Verbatim wording from the response

“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.”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 4 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Work with TEWV to improve learning from serious incidents and share relevant learning, including capacity and capability concerns.

Verbatim wording from the response

“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.”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 4 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Improve recording of reasonable adjustments in Trust records.

Verbatim wording from the response

“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.”

Source location

Response from TEWV
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Improve recording of reasonable adjustments in Trust records.

Verbatim wording from the response

“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.”

Source location

Reponse from Tees Esk and Wear Valleys NHS Foundation Trust (17 June)
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Work with partners to integrate care across health, social-care and voluntary-sector services.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 8 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Provide clinician training enabling implementation of CITO and collaborative work with patients and carers.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Complete consultation with patients, carers, staff and partners to co-create a more inclusive and collaborative service.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 7 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Incorporate elevated suicide risk among autistic people into training, suicide-prevention strategy and clinical guidance.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 6 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Use demographic and clinical information to inform strategic planning, training plans and clinical-supervision priorities.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 7 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Appoint two lived-experience directors to the executive team.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 7 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Expand peer-support worker numbers.

Verbatim wording from the response

“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.”

Source location

Response from Tees Esk and Wear Valleys NHS Foundation Trust (21 June)
Page 7 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Publish the Building the Right Support Action Plan to reduce reliance on mental health inpatient care and support community living.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Publish the refreshed National Autism Strategy addressing health inequalities and access to public services.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Consider further measures to improve the quality and safety of mental health inpatient care and announce the outcome.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 4 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Bring the draft Mental Health Bill and proposed reforms before Parliament as soon as parliamentary time allows.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Launch a public call for evidence on longer-term government action supporting mental health, wellbeing and suicide prevention.

Verbatim wording from the 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.”

Source location

Response from Department of Health and Social Care
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Commit £30 million to keyworker services for children and young people with complex needs at risk of admission or inpatient care.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Consider submissions from the public call for evidence to inform longer-term mental health, wellbeing and suicide-prevention action.

Verbatim wording from the 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.”

Source location

Response from Department of Health and Social Care
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Include autistic people in the Learning from lives and deaths programme to generate learning and support prevention of future deaths.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 3 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Develop an updated Care (Education) and Treatment Review policy requiring reviews before proposed removal of autism or learning-disability diagnoses in mental health hospitals.

Verbatim wording from the response

“• 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.”

Source location

Response from NHS England
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Contractual requirements prevent significant changes to contract awards or specifications during contracting cycles.

Verbatim wording from the response

“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.”

Source location

Response from Humber and North Yorkshire Health Care Partnership
Page 5 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Sensory integration assessment or therapy is commissioned from services outside the Trust.

Verbatim wording from the response

“Any sensory integration assessment or therapy that an individual receives will be commissioned from services outside of TEWV.”

Source location

Response from TEWV
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Sensory integration assessment or therapy is commissioned from services outside the Trust.

Verbatim wording from the response

“Any sensory integration assessment or therapy that an individual receives will be commissioned from services outside of TEWV.”

Source location

Reponse from Tees Esk and Wear Valleys NHS Foundation Trust (17 June)
Page 2 · response
Published 27 April 2022

Open published response

Source evidence

How this respondent position was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

The Trust is responsible for implementing the investigation recommendations assigned to it and is undertaking an improvement programme.

Verbatim wording from the response

“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.”

Source location

Response from Department of Health and Social Care
Page 3 · response
Published 27 April 2022

Open published response
Back to top

Information checked against the published report and official responses · Data reviewed 7 Sep 2026 · About data quality and limitations

Official responses located
4/4

Data last updated 7 September 2026