Robert McGowan

Our ref: 

Chris Morris 
HM Area Coroner for Manchester South 
Coroner's Court 
1 Mottram Street 
Mount Tabor 
Stockport 
SK1 3AG 

By email: 

Dear Mr Morris, 

Minister of State for Care  

39 Victoria Street  
London  
SW1H 0EU 

31st March 2024 

Thank  you  for  the  Regulation  28  report  to  prevent  future  deaths  dated  15  January  2025 
about the death of Robert John McGowan. I am replying as the Minister with responsibility 
for policy in relation to autistic people at the Department. 

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

The report raises concerns about the difficulties Robert experienced due to his autism and 
mental health needs in accessing treatment for his physical health. I understand in Robert’s 
case, this meant that the bacterial endocarditis which led to his death had only been partially 
treated. I also share your concerns  that these barriers continued to exist despite  the fact 
Robert  was  being  supported  by  a  charity,  he  had  a  health  passport  and  healthcare 
professionals had sought a range of individual adjustments to facilitate his access to care 
and  treatment.  In  preparing  this  response,  my  officials  have  made  enquiries  with  NHS 
England to ensure we adequately address your concerns.  

I am concerned that autistic people, on average, die earlier than the general population, and 
continue to experience poorer health outcomes and disparities in the quality of care they 
receive. We know that more needs to be done to address these inequalities and improve 
outcomes for autistic people. 

Every person, including those who are autistic, has the right to excellent care and service 
from wherever they choose to access it. It’s essential that services not only treat everyone 
equitably but also acknowledge and adapt to the individual needs of each person, including 
those who are autistic.  

  
  
 
 
 
 
 
 
 
 
 
  
  
 
 
 
 We  are  taking  action  to  increase  awareness  and  understanding  of  autism  amongst 
healthcare  professionals,  to  help  ensure  that  staff  have  the  right  knowledge  and  skills  to 
provide  safe  and  informed  care.  Under  the  Health  and  Care  Act  2022,  service  providers 
registered with the Care Quality Commission (CQC) are required to ensure their staff receive 
learning disability and autism training appropriate to their role. This training will also help to 
improve the culture within health and social care services, including shifting attitudes and 
approach to ensure people with a learning disability and autistic people are treated safely, 
respectfully and confidently.  

To support providers to meet the statutory training requirement, we are now rolling out the 
Oliver  McGowan  Mandatory  Training  on  Learning  Disability  and  Autism.  Over  2  million 
people  have  now completed  the  e-learning module,  which  is the  first  part of  the  training. 
Depending on  the  level of training  staff  require,  the  Oliver McGowan  Mandatory Training 
includes content on frequently co-occurring conditions for people with a learning disability 
and  autistic  people,  reasonable  adjustments,  avoiding  professional  bias,  and  how  to 
communicate in accessible ways with people and their family.  

You may also find it helpful to be aware that each Integrated Care Board (ICB) must have 
an executive lead for learning disability and autism who will support the board in addressing 
health inequalities; support equal access to care across all health services; and improving 
overall  health  outcomes.  NHS  England  has  published  statutory  guidance  on  these  roles: 
www.england.nhs.uk/long-read/executive-lead-roles-on-integrated-care-boards/.  

I note in your report that healthcare professionals sought to implement a range of reasonable 
adjustments to facilitate Robert’s access to care and treatment and that Robert also had a 
health passport in place. Specifically, I understand from NHS Greater Manchester ICB that 
Robert experienced difficulties with the primary care (GP) appointment booking system and 
so he had reasonable adjustments in place to support him with booking appointments. Under 
the  Equality  Act  2010,  public  sector  organisations  are  required  to  make  changes  in  their 
approach or provision to ensure that services are accessible to disabled people as well as 
to everybody else.  

To make it easier for autistic people and people with a learning disability, or other disabilities, 
to  use  health  services,  NHS  England  is  working  to  improve  the  use  and  recording  of 
reasonable adjustments. This has included mandating the use of a Reasonable Adjustment 
Digital Flag from April 2024, which enables the recording of key information about a patient, 
and their reasonable adjustment needs, to ensure support can be tailored appropriately. I 
am  also  advised  that,  across  Stockport  services,  whenever  a  patient  who  may  need 
additional  support  to  manage  a  hospital  stay  is  admitted  to  hospital,  a  discreet  butterfly 
symbol  is  added  to  their  patient  records  and  to  their  bed  notice  board.  This  tells  anyone 
attending the patient that they may need extra time, care, and support.  Furthermore, this 
directs staff to access the hospital passport which sets down the best way to support the 
individual patient.   

In light of the concerns you have raised in your report, NHS England has committed to issue 
a  reminder  to  clinicians  in  NHS  trusts  on  the  importance  of  assessing  for,  and  making, 
reasonable adjustments when supporting autistic people to gain access to health services. 
At a local level, there is also liaison ongoing with Disability Stockport in relation to a future 

 
 
 
 
 
 
 
 
 
 Masterclass  specific  to  overcoming  the  barriers  faced  by  some  of  their  most  vulnerable 
patients.  

In  addition  to  this,  we  are  continuing  to  learn  from  the  LeDeR  (Learning  from  lives  and 
deaths) programme, which was extended in March 2022 to include autistic people without a 
learning disability for the first time, the purpose of which is to review deaths to see where 
areas of  learning and opportunities  to  improve  can be  found.  This programme  remains a 
crucial  source  of  evidence  that  enables  us  to  build  up  a  detailed  picture  of  the  key 
improvements  needed,  both  locally  and  at  a  national  level,  to  tackle  existing  health 
disparities and to help us identify what actions are required to reduce avoidable deaths of 
autistic  people  and  people  with  learning  disabilities.  NHS  England  advises  that  a  LeDeR 
review  for  Robert’s  death  has  not  yet  been  completed  by  the  local  ICB;  however,  NHS 
England will upload a copy of your Regulation 28 report to the review platform, so that it can 
be considered by the ICB during the LeDeR review. This will help to ensure that the findings 
are used as part of the work of the local governance group for service improvement locally.  

NHS England regional colleagues have also provided assurance that they are engaging with 
the relevant ICB and NHS Trust following your report. NHS England will carefully consider 
input received and will provide you with a further update in due course.  

I hope this response is helpful. Thank you for bringing these concerns to my attention.   

Yours sincerely, 

MINISTER OF STATE FOR CARE