Andrew Ewin-Ripp

Nadia Persaud 
The Coroner’s Court 
Queens Road 
Walthamstow  
E17 8QP 

Dear Coroner, 

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

25 June 2024  

Re: Regulation 28 Report to Prevent Future Deaths – Andrew Ewin-Ripp who 
died on 4th November 2022.  

Thank  you  for  your  Report  to  Prevent  Future  Deaths  (hereafter  “Report”)  dated  2nd 
April  2024  concerning  the  death  of  Andrew  Ewin-Ripp  on  4th  November  2022.  In 
advance of responding to the specific concerns raised in your Report, I would like to 
express my deep condolences to Andrew’s family and loved ones. NHS England are 
keen to assure the family and the coroner that the concerns raised about Andrew’s 
care have been listened to and reflected upon.   

I am grateful for the further time granted to respond to respond to your Report, and I 
apologise for any anguish this delay may have caused to Andrew’s family or friends. I 
realise that responses to Coroner Reports can form part of the important process of 
family and friends coming to terms with what has happened to their loved ones and 
appreciate this will have been an incredibly difficult time for them.  

Your Report raised the concern that GP Practices are not required to carry out annual 
reviews of epilepsy patients. GP Practices required to follow and pay due regard to 
clinical guidelines. The National Institute for Health and Care Excellence (NICE) has 
issued clinical guidelines to general practice on annual reviews, including for Epilepsy.  

The Royal College of General Practitioners (RCGP) has developed eLearning for GPs 
on Sudden Unexpected Death in Epilepsy (SUDEP) and seizure safety: Summary of 
Sudden  Unexpected  Death  in  Epilepsy  (SUDEP)  and  Seizure  Safety  |  RCGP 
Learning. There are also several additional tools and templates available for use in 
general practice to support structured reviews of patients with Epilepsy (for example, 
Ardens  Healthcare  Informatics  have  a  variety  of  resources  to  support  ongoing 
management: Epilepsy : Ardens EMIS Web).  

Regarding your concern about medication compliance, patients on medication should 
have  their  medications  reviewed  at  least  on  an  annual  basis.  The  General  Medical 
Council’s  guidance  for     Good  practice  in  prescribing  and  managing  medicines  and 
devices  -  professional  standards  -  GMC  (gmc-uk.org)  states  (Subsection  93): 
“Whether you prescribe with repeats or on a one-off basis, you must make sure that 
suitable arrangements are in place for monitoring, follow-up and review. You should 

                                                                                                                       
 
 
 
 
 
 
  
 
 
  
 
 
  
 
 
   
 also take account of the patients’ needs and any risks arising from the medicines.” It 
is expected that any patient on repeat medication undergo a routine review.  

Your Report also raises the concerns that there is no clear guidance for the long-term 
monitoring  of  patients  with  epilepsy  and  that  there  was  no  care  pathway  for 
incorporating  urgent  reviews  in  neurology  clinics  in  response  to  patients  reporting 
concerns.  The  National  Institute  for  Health  and  Care  Excellence  (NICE)  are 
responsible for the relevant guidelines: Epilepsies in children, young people and adults 
(nice.org.uk). Most patients with epilepsy will be discharged from follow-up once they 
are  free  of  seizures  for  12  months.  At  this  point,  their  medication  would  only  be 
changed if they had further seizures or other issues arose (such as possible adverse 
effects or consideration of pregnancy). Some patients with additional issues would be 
monitored for longer (see section 4.5.1 of the guidance). As per the above, patients 
should continue to have regular medication reviews with their GPs.  

Providing advice on the longer-term management of epilepsy, including the need for 
regular  medication  and  what  to  do  if  further  seizures  occur,  is  a  central  part  of  the 
management  of  epilepsy,  provided  by  the  neurologist  and  epilepsy  specialist 
nurse.  Access to both neurologists and epilepsy specialist nurses varies considerably 
across the country and few parts of the country have the capacity in the service for six 
monthly reviews of patients with active epilepsy. Many sites are now using ‘patient-
initiated  follow-up’  (PIFU)  to  allow  patients  to  access  the  epilepsy  nurse  service 
promptly even when no longer under regular follow up to avoid the delays outlined in 
this  report.   The  services  in  North  East  London  are  particularly  pressed  with  fewer 
patients seen per head of population, and with fewer seen within 8 weeks (24% vs 
national  average  of  40%).  Your  Report  has  been  shared  with  my  regional  London 
colleagues for their review.  

I would also like to provide further assurances on national NHS England work taking 
place around the Reports to Prevent Future Deaths. All reports received are discussed 
by  the  Regulation  28  Working  Group,  comprising  Regional  Medical  Directors,  and 
other clinical and quality colleagues from across the regions. This ensures that key 
learnings and insights around preventable deaths are shared across the NHS at both 
a national and regional level and helps us pay close attention to any emerging trends 
that may require further review and action.   

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

Honorary Secretary of Council 

Ms Nadia Persaud 
Area Coroner for the coroner area of East London 

Sent by email to: 

24 May 2024 

Dear Ms Persaud 

Regulation 28 Report to Prevent Future Deaths - touching on the death of Andrew Ewin-Ripp 

Thank you for sharing a copy of your report touching on the tragic death of Andrew Ewin-Ripp.  
I am responding on behalf of the Royal College of General Practitioners as Honorary Secretary to 
Council. Firstly, can I convey our sincere condolences to the family and friends of Andrew, I was 
deeply saddened to read of the circumstances around his death.  

The Royal College of General Practitioners (RCGP) is the largest membership organisation in the 
United Kingdom solely for GPs. It aims to encourage and maintain the highest standards of general 
medical  practice  and  to  act  as  the  ‘voice’  of  GPs  on  issues  concerned  with  education;  training; 
research; and clinical standards. Founded in 1952, the RCGP has just over 54,000 members who 
are  committed  to  improving  patient  care,  developing  their  own  skills  and  promoting  general 
practice as a discipline. 

We have considered your report and offer our response focusing on the areas where the RCGP 
might have most significant influence to prevent further deaths.   

We would like to outline our response to your four matters of concern in these three areas.   

1)  Education and support for Continuing Professional Development  
2)  Clinical Policy   
3)  General Policy and Health System Resources 

Royal College of General Practitioners 
30 Euston Square, London, NW1 2FB 
Tel: 020 3188 7400  |  info@rcgp.org.uk  |  rcgp.org.uk 
Registered Charity Number 223106 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 1) Education and Continuing Professional Development  
The  RCGP  has  a  role  in  developing  the  Curriculum  for  new  GPs  as  well  as  providing  ongoing 
continuing  professional  development  (CPD)  support  for  qualified  members.  The  GP  curriculum 
includes  Neurology  within  its  clinical  topic  guides  https://www.rcgp.org.uk/mrcgp-exams/gp-
curriculum/clinical-topic-guides.  The  College  offers  extensive  support  for  CPD  to  members  in 
different  formats  and  we  would  like  to  highlight  three  relevant  resources  which  are  currently 
available to members: 

  SUDEP  
We currently have a resource available to members specifically on SUDEP and Seizure Safety (first 
produced  in  2016  and  updated  in  2021).  https://sudep.org/article/sudep-action-rcgp-launch-
sudep-e-learning. It emphasises the role of General Practice in carrying out Epilepsy reviews using 
video and case studies in a 30min online resource. It highlights the use of the SUDEP and Seizure 
safety  checklist  https://sudep.org/checklist  with  resources  for  both  professionals  and  patients. 
This course is free to access to all 54,000 RCGP members.  

  Epilepsy Diagnosis and Management  
We also have a series of regular Essential Knowledge Updates. In our Update 17 (April 2016 
updated April 2024) there is a specific module on Epilepsy Diagnosis and management. A 
podcast freely available to all in which 
module highlighting the importance of regular annual review (EKU17: Epilepsy 
https://podcasts.apple.com/gb/podcast/eku17-epilepsy/id1474942018?i=1000453462614 )   

 talks about and promotes the e learning 

  Neurology Essentials  
We  published  a  Neurology  One  day  Essentials  update  in  February  2024,  following  a  live 
conference which included a section on ‘Transient loss of consciousness and Epilepsy’. Available 
for 6 months following registration.  

2) Clinical Policy  
The College supports the Clinical policy around Epilepsy management which is laid out in NICE 
Clinical Knowledge Summary (CKS) Epilepsy https://cks.nice.org.uk/topics/epilepsy/  
This recommends undertaking an annual review of all people with epilepsy in primary care at least 
once a year. In the annual review the recommendation is to assess seizure control by asking about 
seizure frequency, severity and any changes since the last person was reviewed. There are clear 
guidelines around when to seek specialist advice for a person with confirmed epilepsy.  

All suspected new patients should be seen by a Specialist and have the diagnosis confirmed and 
currently  the  discharge  of  the  patient  back  to  Primary  Care  is  at  the  discretion  of  the  Epilepsy 
Neurologist, however many patients are often given open access to the Epilepsy Nurse Specialists 
after discharge. The waiting times for ‘Newly diagnosed Epilepsy patients’ and ‘Patients who may 
be uncontrolled’ and need a Neurology review vary (in some areas this can be over a year. This 
may cause significant issues for patients who are waiting for a diagnosis or for further specialist 
input from a Neurologist. This issue is specifically highlighted in Andrew’s case where the GP made 
repeated  referrals  for  Specialist  advice  and  appointments.  We  agree  that  there  are  no  clear 
pathways  or  standards  for  urgent  Neurology  review  like  there  are  for  ‘Cancer  care’.  This  often 

 
 
 
 
 
 
 places the Patient and the GP in an unacceptable position of managing the clinical risks without 
Specialist input and places further pressures on Emergency Services.  
The NICE guidance includes written patient information and factsheets from ‘Epilepsy action’.  
It  would  however  be  helpful  to  develop  more  specific  decision  support  tools  around  epilepsy 
management  such  as  the  ones  already  produced  for  other  disease  areas  by  NHS  England 
(https://www.england.nhs.uk/personalisedcare/shared-decision-making/decision-support-
tools/)  

The College is not responsible for Commissioning Services from General Practice. In England this 
role falls to NHS England. General Practice has however been funded for Epilepsy management 
through the GMS contract and Quality and Outcomes Framework (QOF) since 2004. There is a 
requirement  to  maintain  a  register  of  adults  receiving  drug  treatment  for  Epilepsy  (EP001). 
Between 2004 and 2014 there were 2 additional indicators which fell out of the annual review 
process i.e. those who were seizure free (EP002) and the number of women receiving information 
and counselling about reproductive issues (EP003). The EP002 and EP003 indicators were retired 
in 2014 by NHS England. There has just been a Government Consultation which closed on the 7th 
March around the future of incentives in General Practice including QOF so there may be changes 
in  coming  years.  https://www.gov.uk/government/consultations/role-of-incentive-schemes-in-
general-practice/role-of-incentive-schemes-in-general-practice#how-to-respond  

3) General Policy and Health System Resources 
Unfortunately,  Andrew’s  case  highlights  the  importance  of  supporting  Patients  with  Epilepsy 
within a healthcare system. The resources within General Practice as well as secondary care are 
stretched and in General Practice the current priority is around recovering access to primary care              
(https://www.england.nhs.uk/long-read/delivery-plan-for-recovering-access-to-primary-care-
update-and-actions-for-2024-25/).  Waiting  lists  for  outpatient  appointments  have  grown  and 
more than half the patients on Neurology outpatient lists are waiting over 18 weeks, in some areas 
a  routine  appointment  is  over  one  year.  Developing  a  Personalised  approach  with  the  right 
integrated  care  pathways  including  timely  access  to  support  is  challenging  especially  in  areas 
where there are difficulties recruiting Epilepsy Neurologists and Nurses. In London there is one 
Epilepsy  Neurologist  to  every  191  patients  whereas  in  the  North  East  of  England  it  is  one 
Neurologist to 755 patients. England has half the number of Neurologists compared to France and 
Germany and only two Epilepsy Nurses per 500,000 population (which is much lower than the 
NICE  recommendation  of  9  nurses  per  500,000).  There  is  an  argument  for  providing  more 
Integrated approach using a multiprofessional teams which include Specialised Pharmacists. The 
recent  paper  ‘Integrated  Care  in  Epilepsy  Management:  A  Scoping  Review  of  the  Models  and 
Components of Health and Social Care Delivery’ examines some future areas for integration policy 
(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10921962/ ). 

In  some  Integrated  Care  Systems  there  are  local  educational  resources  and  liaison  between 
Specialists  and  GPs  and  decisions  around  specific  pathways.  An  example  of  this  was  a  recent 
Epilepsy webinar held in the Frimley Integrated Health System outlining the risks of SUDEP at the 
end of the webinar (https://www.youtube.com/watch?v=rLW3R671WjY ).   

I would propose that the specific action RCGP could take would be to highlight NICE guidelines 
and current educational material on SUDEP through our Clinical Networks and member forums. 

 
 
 
 
 
 
 I  would  also  recommend  highlighting  to  NHS  England  the  issues  relating  to  waiting  times  for 
Epilepsy  appointments  and  the  need  for  standardised  Urgent  care  pathways  for  patients  with 
uncontrolled epilepsy.  

I trust that this reply is helpful and if you have any questions, please do not hesitate to contact me. 
Our sincere condolences are with Andrew’s family. 

Yours sincerely 

RCGP Honorary Secretary

Care Quality Improvement Directorate 
Royal College of Physicians 
The Spine 
2 Paddington Village 
Liverpool L7 3FA 
Tel: +44 (0)151 318 0000 
Email: cqid@rcp.ac.uk 
www.rcp.ac.uk 

Miss Nadia Persaud, HM Coroner East London 
Coroner’s Court 
124 Queens Road 
Walthamstow 
E17 8QP 

Letter by email to: 

20 May 2024 

Dear Miss Persaud, 

Thank you for your contact raising concerns related to the care of Andrew Erwin-Ripp in your Regulation 
28 notice dated 2 April 2024. 

The Royal College of Physicians brings together multiple medical specialities and oversees training of 
Physicians. 

In relation to your concerns for this specific case we have sought expert advice from the Association of 
British Neurologists (ABN). They confirm the following: 

•  National  guidance  on  monitoring  NICE  (https://www.nice.org.uk/guidance/ng217 )  (section 
4.5),  and  SIGN  143  (https://www.sign.ac.uk/our-guidelines/diagnosis-and-management-of-
epilepsy-in-adults/ ) containing information on SUDEP and ideal models of care in both primary 
and secondary care. 

•  For annual follow up in primary care, people with epilepsy were previously included within the 
primary  care  Qualities  Outcomes  Framework  up  to  2014,  but  no  longer.  The  Association  of 
British  Neurologists  would  welcome  reinstating  annual  reviews  for  people  with  epilepsy  in 
primary care as suggested by the independent neurologist. 

•  For guidance on longer term monitoring of people with epilepsy, and safe discharge timing it is 
not possible to provide guidance on this that suits all patients with epilepsy as it depends on 
many variables. The ABN therefore do not feel that it would be appropriate to make specific 
recommendations regarding timing for discharge. Many patients are now enrolled in patient-
initiated  follow-up  schemes  (or equivalent)  rather  than being  fully  discharged. Fewer routine 
reviews may aid seeing people when most needed. 
It  is  good  practice  to  include  comments  in  letters  on  discharge  regarding  the  importance  of 
continuing  to  maintain  good  compliance  with  antiseizure  medication  after  discharge,  and  to 
notify the GP  if there  is  seizure  recurrence. If a patient has been discharged from secondary 

• 

© Royal College of Physicians 
Registered charity no 210508 

 
 
 
  
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 
 
  
 
 
 care, they would normally need a new referral and the contact with secondary care will be via 
the GP which ABN agree should also be made clear in the discharge letter. 

•  The  UK  has  the  lowest  number  of  neurologists  per  head  of  population  in  Europe,  with  an 
approximate average of 1 consultant neurologist per 91 000; the European average is about 1 
per  10  000.  The  prevalence  of  epilepsy  specialist  nurses  is  similarly  very  low,  for  example  in 
Edinburgh, there is presently less than 2 WTE nurses to cover a population of close to 1 million. 
Many people with epilepsy do not have access to an epilepsy nurse specialist. This means that 
many  centres  are  finding  it  difficult  to  review  patients  urgently  and  provide  urgent 
appointments. However, many units will have an on-call telephone advice system with a duty 
consultant/registrar for more immediate advice to GPs. It will of course vary depending on local 
service set up and workforce. 

The  Royal  College  of  Physicians  supports  the  position  of  Association  of  British  Neurologists  and 
continues to advocate for an expansion in the neurology workforce. 

Please do let me know if you need any further information. 

Yours sincerely, 

Clinical Vice President