Prevention of Future Deaths reports · 2022

Zoe Zaremba

Regulation 28 report to prevent future deaths, reference 2022-0117, written 25 Apr 2022. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.

Date of report25 Apr 2022
Reference2022-0117
DeceasedZoe Zaremba
CoronerJohn Broadbridge
Coroner areaNorth Yorkshire and York including North Yorkshire Western District
CategoryMental Health related deaths · Suicide (from 2015) · Hospital Death (Clinical Procedures and medical management) related deaths
Sourcejudiciary.uk record · original PDF
Responses published5

The report

Text extracted from the PDF text layer. Reproduced verbatim, including the scan's own layout.

REGULATION  28:  REPORT TO  PREVENT  FUTURE  DEATHS  (1) 

NO TE:  This  form is to  be  used after an inquest. 

REGULATION  28  REPORT TO  PREVENT  FUTURE  DEATHS 

THIS  REPORT IS  BEING  SENT TO: 

1.  Gillian  KEEGAN,  Minister of State for Care and  Mental  Health  with  lead 

on  suicide prevention 

2.  CEO,  North Yorkshire Clinical  Commissioning Group 
3.  CEO, Tees  Esk and Wear Valleys  NHS  Foundation  Trust (“TEWV”) 
4.  NHS  England and  NHS  Improvement 

CORONER 

I  am  John  Nigel  BROADBRIDGE  assistant coroner,  for the coroner area of North 
Yorkshire  and  York  including  North Yorkshire Western  District 

2 

CORONER’S  LEGAL  POWERS 

I  make this  report under paragraph  7,  Schedule  5,  of the  Coroners  and Justice Act 
2009 and  Regulations  28  and  29  of the  Coroners  (Investigations)  Regulations  2013. 

3 

INVESTIGATION and  INQUEST 

On  2  September 2020  an  investigation commenced  into  the death  of Zoe  Emma 
ZAREMBA  (“Zoe”)  aged  25  years at her death.  The  investigation concluded  at the  end 
of the four day inquest on  14  April  2022. 

The  Narrative  conclusion  was  that: 
The  deceased  died  because of  suicide.  Her  death  was  contributed  to  by  the  actions 
and  inactions  of the  mental  health  clinicians  entrusted  to  keep  her  safe within  a  care 
system  that was  underdeveloped to  manage an  autistic  individual with  complex  needs 

4 

CIRCUMSTANCES OF THE  DEATH 

Zoe,  who  had  a  history of  repeated self-harm  and  repeated attempts on  her own  life, 
should  have  received  mental  health care from  community mental  health  services as 
well  as  inpatient care.  She withdrew from  engagement with  those services  because 
she did  not  trust those entrusted  to  keep  her safe,  in  part  because of clinicians’  failure 
to  understand  her autistic condition  and  their reliance  on  an  unsubstantiated 
attribution  of a  mental  disorder instead.  In  her increased vulnerability  and  after 
discharge  from  inpatient detention on  20  May 2020  she  received very  limited  support. 
On  21  June  2020  she was found  unresponsive,  despite  searches,  hidden  by 
undergrowth  on  land  adjacent to  A684  (Bedale  by-pass) having  ingested  an  unknown 
quantity of 
she went  missing from  there.  Her death was  recognised  where  she was found  at 
16.40  hours  that same afternoon,  established  as from  the effects of that ingestion. 

  earlier at  her home  in  the  night  of  13-14  June 2020 when 

5 

CORONER’S  CONCERNS 

I 

OFFICIAL  SENSITIVE

-

 During  the  course of the  inquest the evidence revealed  matters  giving  rise to  concern. 
In  my opinion  there  is  a  risk that future deaths  could  occur unless action  is  taken.  In 
the circumstances it  is  my statutory duty to  report to  you. 

The MATTERS  OF CONCERN  are as follows. 

—

The evidence indicated: 
I  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 TEWVs  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  commissioned  providers were supplying.  There was  a  want of 
effective communications  between  these ‘teams’  not  least as  patient data was  not 
accessible  by  one to  the  others  electronic records  (patient consent  permitting) and the 
fact of disengagement.  There was  a  sense of ‘silo’  working,  militating  against 
partnership working,  that encouraged  unfavourably the  undesirable “uncoupling’  of 
experiences; 

E  statistical  evidence indicated  that autistic  individuals  are  more at risk of suicide 

than those with  no  neurodevelopmental  condition,  and females  at greater risk that 
their male counterparts; 

2 

OFFICIAL  SENSITIVE 

 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 form  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. 

6 

ACTION  SHOULD  BE TAKEN 

In  my opinion action  should  be  taken to  prevent future  deaths and  I  believe you  and 
your organisation  have the  power to  take such action. 

7 

YOUR  RESPONSE 

You  are  under a  duty  to  respond  to  this  report within  56  days  of the  date of this  report, 
namely by 21  June 2022.  I,  the coroner,  may extend  the  period. 

Your response  must contain details of action taken or proposed  to  be taken,  setting 
out the timetable for  action.  Otherwise  you  must explain why  no action  is  proposed. 

8 

COPIES  and  PUBLICATION 

I  have sent a  copy of my report to  the Chief Coroner  and to  the following  Interested 
Persons 

,  Mother of Zoe 

I  am  also under a duty to  send  the  Chief Coroner a copy of your response. 

The  Chief Coroner may publish either or both  in  a complete or redacted or summary 
form.  He  may send  a copy of this  report to  any person who  he  believes  may find  it 
useful  or of interest.  You  may make  representations  to  me,  the coroner,  at the time  of 
your response,  about the release or the  publication  of your response  by the  Chief 
Coroner. 

25 April  2022 

SIGNED  BY 

3 

OFFICIAL  SENSITIVE

-
Also filed under 2022-0117: 2022-0117-Reponse-from-Tees-Esk-and-Wear-Valleys-NHS-Foundation-Trust-17-June.pdf
West Park Hospital 
Edward Pease Way 
Darlington 
Co Durham 
DL2 2TS 

Tel: 

Email: 

Your Ref: 00931-2020 

17 June 2022 

Mr J Broadbridge 
HM Assistant Coroner for 
North Yorkshire and York 
NYCC The Old Court House 
3 Racecourse Lane 
Northallerton 
North Yorkshire 
DL7 8QZ 

Dear Mr Broadbridge 

Re: Zoe Zaremba (deceased) 

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

Firstly, with reference to your letter of concern: 

1. No of Patients with ASD treated by the Trust when they had received their

formal diagnosis

Within the trust Electronic Care Record we have several Autism Markers which 
include, an ICD-10 Diagnosis of Autism, a referral reason of suspected/confirmed as 
Autistic and or referral action of ‘suspected as autistic’. Some patients may have 
both an autism diagnosis and an autism referral reason/referral action however the 
numbers are for unique patients in the trust.  

The numbers are highlighted below: - 

• 2676 patients who are currently open to Trust services have an Autism ICD-

10 diagnosis.

• 7291 patients who are currently open to Trust services have a referral reason

of suspected/confirmed autism.

_____________________________________________________________________________________________________

                                                                                                
 
 • 979 patients who are currently open to Trust services have a referral action of

suspected autism.

• The total number of patients open to Trust services with an Autism marker is
thus 10116. Whilst this does not equate to the number with a validated
diagnosis of autism, it represents approximately 17% of the total number of
people open to the Trust.

•

In North Yorkshire the commissioned service for assessment and support is
external to the Trust and so the numbers are correspondingly less in terms of
those waiting for an assessment.

people with an 
Autism Marker.xlsx

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

Whether Sensory assessment and or therapy has occurred  

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

2. No of patients who are female and their ages and age range

Gender and Age 
range  of people wit 

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

_____________________________________________________________________________________________________

                                                                                                
 
 3. No of patients who have been diagnosed with EUPD/ BPD and whether this

has been validated / Reviewed

Within the Trust we have identified 134 patients that have both an Autism marker 
and a documented diagnosis of Emotionally Unstable Personality disorder (EUPD) 
which includes Borderline Personality Disorder (BPD).  

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

1) understanding the rationale and the validity of the diagnosis in these cases, in

view of the potential for diagnostic confusion.

2) determining if and how the diagnosis has been shared and made clear in the

records.

3) whether the diagnosis has been withdrawn and if so, how this has been

communicated both to people and to services.

4) engaging with clinical teams proactively and acknowledge that this could

possibly be a very significant and positively distressing process to arrange a
diagnostic review for patients and therefore we need to take time to do this
properly along with a review of reasonable adjustments and tailored therapeutic
options as appropriate.

5) Learning from Zoe’s death and the subsequent inquiries has already been

communicated by the patient safety team, and most recently the need to be
validating or reviewing any diagnosis of EUPD has been highlighted by the
medical director to a meeting of all senior medical staff (1st June 2022).

Further to the specific data and associated actions detailed above, we have 
identified areas in which we can improve the quality of our data in order to support 
improvements in the care we provide. We have already improved how we record 
reasonable adjustments, and we have an opportunity to consider further enhancing 
our data recording around autism when we introduce a new data framework (CITO) 
later in the year. 

Yours sincerely 

Chief Executive Officer

Responses

5 responses published against this report on judiciary.uk. A response is a body's written reply to the coroner's concerns; publication is at the discretion of the Chief Coroner's office, so an absent response does not mean nobody replied.

Response from Department of Health and Social Care (PDF)
From Maria Caulfield MP 
Parliamentary Under Secretary of State 
Department of Health & Social Care 

39 Victoria Street 
London 
SW1H 0EU 

17 January 2023 

John Broadbridge 

North Yorkshire and York 

The Old Court House 

3 Racecourse Lane 

Northallerton 

DL7 8QZ 

Dear Mr Broadbridge,  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yours sincerely, 

 MARIA CAULFIELD
Response from Humber and North Yorkshire Health Care Partnership (PDF)
1 Grimbald Crag Court 
St James Business Park 
Knaresborough 
HG5 8QB 

Coroners Administration 
North Yorkshire and York 
The Old Court House 
3 Racecourse Lane 
Northallerton 
DL7 8QZ 

Dear HM Assistant Coroner Broadbridge 

Inquest touching upon the death of Zoe Zaremba 
Regulation 28 Report 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Actions which the CCG/ICB is taking moving forward: 

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

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

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

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

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

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

Yours sincerely 

Teresa Fenech 
Executive Director of Nursing and Quality 
NHS Humber and North Yorkshire ICB 

This response has been developed in partnership with the previous NHS North 
Yorkshire CCG Director of Nursing  

Sue Peckitt 
Director of Nursing and Quality  
NHS North Yorkshire CCG
Response from NHS England (PDF)
John Broadbridge 
North Yorkshire and York 
The Old Court House 
3 Racecourse Lane 
Northallerton 
DL7 8QZ 

National Medical Director 
NHS England 
Wellington House 
133-155 Waterloo Road
London 
SE1 8UG 

10 August 2022 

Dear Mr Broadbridge, 

Re: Regulation 28 Report to Prevent Future Deaths – Zoe Emma Zaremba who died 
on 21 June 2020. 

Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 25 April 
2022  concerning  the  death  of  Zoe  Emma  Zaremba  on  21  June  2020.  I  would  like  to 
express my deep condolences to Zoe’s family.  

Following the inquest, you raised concerns in your Report regarding the care she received 
following  her  diagnosis  of  Asperger’s  Syndrome  and  during  her  complex  mental  health 
condition.  

We  can  see  that  this  case  raises  very  concerning  issues  about  gaps  in  care  for  a 
vulnerable  autistic  young  woman  suffering  with  complex  mental  health.  The  report 
highlights  how  important  it  is  that,  when  autistic  people  access  mental  health  services, 
there is high quality care tailored to individual needs. Care should be reasonably adjusted 
and  delivered  by  staff  who  have  knowledge  and  awareness  of  autism,  including  an 
understanding of how best to respond to women with a history of trauma.  

In  the  context  of  the  NHS  Long  Term  Plan,  initiatives  have  been  undertaken  by  NHS 
England that are of relevance to the issues raised following Zoe’s death. This includes one 
off funding made in 2021/2022 for future improvements, to include:  

• £7 million for local areas to test ways to improve the quality of autism diagnostic
pathways. This funding supported a wide range of projects that tested new ways to
support  people  and  their  families  through  the  autism  diagnostic  pathway  (39
projects for children and young people and 25 projects for adults: a total of 64 one-
off  projects).  The  projects  are  still  underway,  and  outcomes  are  expected  to  be
reported  to  the  programme  later  this  year  and  into  early  2023.  We  will  use  the
learning from these projects along with any available research to inform guidance/
support  for  local  systems  on  how  to  improve  the  quality  and  access  to  autism
diagnostic assessments including pre and post diagnostic support
• £1.5  million  supported  autism  training  for  staff  working  in  adult  mental  health
inpatient settings.

 •  £4  million  for  a  range  of  projects  across  the  country  to  improve  the  sensory 
environment of mental health hospitals. There were 40 projects across the country 
aimed at environmental changes to accommodate sensory needs of autistic people 
in mental health inpatient settings. The projects delivered changes to the physical 
environment and/or training for staff on the sensory needs of autistic people and/ 
or learning from the experiences of patients.  
• We are developing an updated Care (Education) and Treatment Review (C(E)TR) 
policy.  The  new  published  policy  will  include  a  requirement  for  people  with  a 
learning disability and autistic people in a mental health hospital to have a C(E)TR 
take place where there is a proposal to remove a diagnosis of autism or learning 
disability for a person.  

The University of Reading were also been asked to develop a sensory assessment tool 
for use in mental health hospitals and we commissioned the National Development Team 
for Inclusion (NDTi) to develop Ten Sensory Friendly Ward Principles as part of the “It’s 
Not Rocket Science” work; see here for details. The Ten Principles are focused on the, 
often  quite  small,  changes  needed  to  ward  environments  to  improve  the  sensory 
environment for autistic people. The principles were used to inform the development and 
delivery  of  the  sensory  projects  programme  in  2021/2022  so  that  projects  had  to 
demonstrate how the principles were used. We are currently developing a sensory friendly 
resource pack for health Trusts and Integrated Care Systems (ICSs).  

We  have  also  reviewed  the  Regulation  28  Report  response  from  Tees,  Esk  and  Wear 
Valleys NHS Foundation Trust (TEWV), who were responsible for Zoe’s care, outlining the 
actions they are implementing following the concerns raised by Zoe’s case. We note the 
changes and improvement to training, risk assessment and holistic care, as well as the 
commitment to review all of their patients currently with an Autism marker and a diagnosis 
of Emotionally Unstable Personality Disorder (EUPD). We also welcome the intention for 
better collaboration and communication between mental health services as a result of the 
changes  to  the  commissioning  model  supported  by  the  newly  created  Integrated  Care 
System for Humber & North Yorkshire. We hope this provides further assurance around 
the steps being taken, following the concerns raised around Zoe’s care in the Report.  

Thank you for bringing these important patient safety issues to my attention and please 
do not hesitate to contact me should you need any further information. 

Yours sincerely,  

National Medical Director 

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

Your Ref: 00931-2020 

17 June 2022 

Mr J Broadbridge 
HM Assistant Coroner for 
North Yorkshire and York 
NYCC The Old Court House 
3 Racecourse Lane 
Northallerton 
North Yorkshire 
DL7 8QZ 

Dear Mr Broadbridge 

Re: Zoe Zaremba (deceased) 

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

Firstly, with reference to your letter of concern: 

1.  No of Patients with ASD treated by the Trust when they had received their 

formal diagnosis  

Within the trust Electronic Care Record we have several Autism Markers which 
include, an ICD-10 Diagnosis of Autism, a referral reason of suspected/confirmed as 
Autistic and or referral action of ‘suspected as autistic’. Some patients may have 
both an autism diagnosis and an autism referral reason/referral action however the 
numbers are for unique patients in the trust.  

The numbers are highlighted below: -  

•  2676 patients who are currently open to Trust services have an Autism ICD-

10 diagnosis. 

•  7291 patients who are currently open to Trust services have a referral reason 

of suspected/confirmed autism. 

_____________________________________________________________________________________________________
Chief Executive: Brent Kilmurray                                                                                                Chairman: Paul Murphy (Interim) 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 
 
 
 
 
 
 
 
 
 
 
 •  979 patients who are currently open to Trust services have a referral action of 

suspected autism. 

•  The total number of patients open to Trust services with an Autism marker is 
thus 10116. Whilst this does not equate to the number with a validated 
diagnosis of autism, it represents approximately 17% of the total number of 
people open to the Trust. 

• 

In North Yorkshire the commissioned service for assessment and support is 
external to the Trust and so the numbers are correspondingly less in terms of 
those waiting for an assessment. 

people with an 
Autism Marker.xlsx  

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

Whether Sensory assessment and or therapy has occurred   

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

2.  No of patients who are female and their ages and age range  

Gender and Age 
range  of people wit  

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

_____________________________________________________________________________________________________
Chief Executive: Brent Kilmurray                                                                                                Chairman: Paul Murphy (Interim) 

 
 
 
 
 
 
 
 
 
 
 3.  No of patients who have been diagnosed with EUPD/ BPD and whether this 

has been validated / Reviewed  

Within the Trust we have identified 134 patients that have both an Autism marker 
and a documented diagnosis of Emotionally Unstable Personality disorder (EUPD) 
which includes Borderline Personality Disorder (BPD).  

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

1)  understanding the rationale and the validity of the diagnosis in these cases, in 

view of the potential for diagnostic confusion. 

2)  determining if and how the diagnosis has been shared and made clear in the 

records. 

3)  whether the diagnosis has been withdrawn and if so, how this has been 

communicated both to people and to services. 

4)  engaging with clinical teams proactively and acknowledge that this could 

possibly be a very significant and positively distressing process to arrange a 
diagnostic review for patients and therefore we need to take time to do this 
properly along with a review of reasonable adjustments and tailored therapeutic 
options as appropriate.  

5)  Learning from Zoe’s death and the subsequent inquiries has already been 

communicated by the patient safety team, and most recently the need to be 
validating or reviewing any diagnosis of EUPD has been highlighted by the 
medical director to a meeting of all senior medical staff (1st June 2022). 

Further to the specific data and associated actions detailed above, we have 
identified areas in which we can improve the quality of our data in order to support 
improvements in the care we provide. We have already improved how we record 
reasonable adjustments, and we have an opportunity to consider further enhancing 
our data recording around autism when we introduce a new data framework (CITO) 
later in the year. 

Yours sincerely 

Brent Kilmurray, 
Chief Executive Officer 

_____________________________________________________________________________________________________
Chief Executive: Brent Kilmurray                                                                                                Chairman: Paul Murphy (Interim)
Response from Tees Esk and Wear Valleys NHS Foundation Trust 21 June (PDF)
West Park Hospital 
Edward Pease Way 
Darlington 
Co Durham 
DL2 2TS 

Tel: 

Email: 

21 June 2022 

Mr J Broadbridge 
HM Assistant Coroner for 
North Yorkshire and York 
NYCC The Old Court House 
3 Racecourse Lane 
Northallerton 
North Yorkshire 
DL7 8QZ 

Dear Mr Broadbridge 

Re:   Zoe Zaremba 

Regulation 28 Report 

Further to your letter of concern of 21st April 2022 and the subsequent Regulation 
28 Report to Prevent Future Deaths, I write to detail the actions the Trust has 
taken and those that we continue to implement to address the concerns you 
identified during the inquest into Zoe Zaremba’s death. I would like to assure you 
that as an organisation we have taken your concerns very seriously and are 
committed to work with our partners to improve the care for patients and their 
families.  

For ease of reference, I will address each of these in turn: 

Concern 1 – Zoe was diagnosed at age 16 years as being autistic by CAMHS 
with a designation of Asperger’s Syndrome. Her medical records recorded 
that.   

This is also our understanding of when Zoe was diagnosed with autism. 

Concern 2 - In or about 2016 she was wrongly attributed by the Mental Health 
Service, TEWV, clinicians - who knew of her autism - as undergoing 
Emotionally Unstable Personality Disorder (“EUPD’). 

Within the Trust we have now identified 134 patients that have both an Autism 
marker and a documented diagnosis of Emotionally Unstable Personality disorder 
(EUPD) which includes Borderline Personality Disorder (BPD).  

_____________________________________________________________________________________________________

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

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

1)  understand the rationale and the validity of the diagnosis in these cases, in view 

of the potential for diagnostic confusion 

2)  determine if and how the diagnosis has been shared and made clear in the 

records 

3) 

identify whether the diagnosis has been withdrawn and if so, how this has been 
communicated both to people and to services. 

4)  engage with the identified patient and clinical teams proactively and 

compassionately to arrange a diagnostic review, along with a review of 
reasonable adjustments to enable people to best access and benefit from 
services and tailored therapeutic options as appropriate.  

Further to the specific data and associated actions detailed above, we have also 
identified areas in which we clearly need to improve the quality of our data to support 
improvements in the care we provide. The oversight of the review of these cases will 
be held by the medical director who will ensure timely completion. This will be 
reported through the Trust’s quality governance routes.   

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

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

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attach
ment_data/file/216980/Liberating-the-NHS-No-decision-about-me-without-me-
Government-response.pdf 

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

_____________________________________________________________________________________________________

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

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

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

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

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

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

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

_____________________________________________________________________________________________________

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

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

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

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

a)  no multidisciplinary clinical assessment and formulation addressed her 

autism; 

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

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

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

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

_____________________________________________________________________________________________________

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

b)  no reasonable adjustments were then made in terms of her sensory and 

environmental needs in any timely fashion, or at all. 

Within the North Yorkshire teams, and across the trust supervision and support is 
being sought by the generic community teams on a case-by-case basis from 
clinical experts, who have an appropriate level of expertise to check and 
challenge the quality of care being provided. This is not only in relation to the 
specific care and treatment pathway for the individuals concerned, but also looks 
at the ability and understand of the team to provide reasonable adjustments when 
working with patients who have an autism diagnosis or who present with such 
traits. This sits alongside the training that is being delivered to local teams to 
increase knowledge and understanding of these issues. The level of uptake of 
this support is being closely monitored by the Autism Project Team and I can 
confirm that the teams are regularly making use of the knowledge and expertise 
of their specialist autism colleagues when working with this patient group.  
Additionally, as part of the Trusts Clinical Journey there is a commitment to 
increase personalised care planning which would include reasonable adjustments 
to meet individual needs.  

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

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

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

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

_____________________________________________________________________________________________________

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

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

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

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

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

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

e)  statistical evidence indicated that autistic individuals are more at risk of 

suicide than those with no neurodevelopmental condition, and females at 
greater risk that their male counterparts; 

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

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

_____________________________________________________________________________________________________

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

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

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

This action plan is being monitored through trust governance processes.  

h)  Zoe lurched from crisis to crisis remaining at high risk to her own safety; 
she died because she could no longer cope with the sense of injustice 
caused by others that overwhelmed her thinking. She felt she was not 
being listened to by community mental health services. Her therapy from 
outside providers - which was proving helpful to her - was disrupted by 
COVID-19 limitations on face-to-face consultations; Both locally, including 
regional, but also nationally the evidence revealed a few serious issues that 
require urgent and immediate action to support autistic people well, not 
just from a sensory and environmental basis (which TEWV have started to 
improve albeit from a low baseline according to the evidence received). 
Urgent solutions are required to prevent future deaths of autistic patients 
especially with mental health needs; 

We have undertaken a wide consultation with patients, carers, staff, and external 
partners to co-create a more inclusive and collaborative service. This consultation 
took several forms including ‘Our Big Conversation’, which used online crowd-
sourcing methodology, as well as programme boards to follow through the key 
service changes. We have a commitment to be working in equal partnership with 
people with lived experience and have now brought this directly to the heart of 
the organisation by appointing 2 Lived Experience Directors to the executive 
team. We are also expanding our peer support worker numbers.  

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

_____________________________________________________________________________________________________

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

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

Yours sincerely 

, 

Chief Executive Officer 

_____________________________________________________________________________________________________

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