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

25 June 2024

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.

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

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.

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

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 talks about and promotes the e learning module highlighting the importance of regular annual review (EKU17: Epilepsy

 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.