This report is issued under s.23 of the Public Services Ombudsman (Wales) Act 2019. We have taken steps to protect the identity of the complainants and others as far as possible.

The name of the complainants and their relatives have been anonymised

Ms A, on behalf of 7 complainants, complained that Hywel Dda University Health Board had stopped providing an appropriate specialist service to epilepsy patients who had a learning disability (“LD”). All 7 complainants had adult children who had been using the service. They said that the Health Board failed to make adequate provision for their care after the service had ended in June 2021, and that there was still no adequate plan in place to meet the needs of LD epilepsy patients within the Health Board.

The investigation found that when the Health Board’s LD Epilepsy Service ceased in June 2021, the Health Board did not review the patients on its lists in a timely manner, nor did it provide adequate alternative provision to meet their needs. The Ombudsman also found that, 4 years later, there was still no appropriate and accessible pathway in place to ensure that the needs of this group of patients was adequately met.

The Ombudsman upheld the complaint. The Ombudsman was concerned that the shortcomings identified affected a very vulnerable group of patients. An appropriate service was still not in place and this potentially affected more than the 7 complainants who approached the Ombudsman’s office.

The Ombudsman made a number of recommendations, which the Health Board accepted.

a) Take immediate steps to progress its plans to implement a clear and accessible LD Epilepsy care pathway, in line with the External Review findings, so that all patients within its area can access care and support appropriate to their needs. It should obtain an external professional clinical review to ensure the adequacy of the pathway and proposed provisions. It should update the Ombudsman about the action it has taken within 4 months of the date of this report.

b) Ensure that there are timescales attached to any action plan and that there is Board oversight of progress, in line with the stated timescales.

Within 2 months:

c) For each of the 7 complainants, provide a written apology for the lack of communication and lack of alternative provision put in place for the care of their relatives following the end of the LD Epilepsy Service.

d) Provide a comprehensive breakdown to each of the 7 complainants about the current care that is being offered to their relatives, the status of and responsibility for any ongoing monitoring/ care reviews/ risk plans, and who to contact for advice or concerns.

Within 4 months:

e) Conduct a thorough review of its LD epilepsy patient lists to ensure that all have up to date care plans/risk assessments and emergency medication plans, and that there are no LD epilepsy patients who have been missed or are currently still waiting for a neurology appointment. There should also be Board oversight of this audit to ensure that it is appropriately completed.

1.My office received a complaint from Ms A, on behalf of 7 complainants, that Hywel Dda University Health Board (“the Health Board”) had stopped providing an appropriate specialist service to epilepsy patients who had a learning disability. All 7 complainants had adult children who had been using the service.

2. I investigated the complaint that, following cessation of the service in June 2021:

a) The Health Board did not review patients’ needs in an adequate and timely manner and tell them what alternative provision would be in place to meet their specialist needs.

b) The Health Board still has no plan in place to provide a service which would be able to meet the health needs of this vulnerable patient group.

3. My Investigation Officer obtained comments and copies of relevant documents from the Hywel Dda University Health Board and considered those in conjunction with the evidence provided by the complainants. I have not included every detail investigated in this report, but I am satisfied that nothing of significance has been overlooked.

4. The complainants and the Health Board were given the opportunity to see and comment on a draft of this report before the final version was issued.

5. It is not the purpose of this report to provide a comprehensive history of the circumstances which led to the end of the service, nor to suggest to the Health Board how it should provide this service in future. The report focusses solely on the issues investigated.

6. The following information and guidance is relevant to the content of this report:

• Welsh Government Learning Disability Strategic Action Plan 2022-2026, Welsh Government, 24 May 2022. “Our plan for developing and implementing Learning Disability policy from 2022 to 2026”. To read the Plan, click here.
• Learning Disability Delivery and Implementation Plan 2022 – 2026 Welsh Government October 2022. To read the Plan, click here.
• Epilepsies in children, young people and adults: NICE guideline NG217. Sections 9 and 10 specifically refer to LD epilepsy patients and reducing the risk of SUDEP. Published: 27 April 2022 Last updated: 30 January 2025. To read the guideline, click here.
• Step Together: Integrating Care for People with Epilepsy and a Learning Disability, 2021. To read this document, click here.
• Royal College of Psychiatrists Good Psychiatric Practice CR203; Management of Epilepsy in Adults with Intellectual Disability, April 2017. To read the report, click here.
• Public Services Ombudsman for Wales Public Interest Report against Hywel Dda University Health Board, October 2021 – 202002558. To read a summary of this report, click here.
• Epilepsy Service Provision Wales Position Statement, (Updated March 2023) Epilepsy Action Cymru. To read this statement, click here.

7. The Health Board provided a specialist epilepsy service to patients with learning disabilities (“the LD Epilepsy Service”). Many of these patients have multiple complex needs, and are at a higher risk of SUDEP (Sudden Unexpected Death in Epilepsy – where someone with epilepsy dies without warning and a post mortem does not establish any other cause of death). The service was run by a consultant who specialised in the epilepsies associated with LD (“the Specialist Consultant”), supported by specialist nursing staff (experienced community learning disability nurses). There were two clinic sessions every month. The service provided a consistent and targeted service to patients and carers to ensure that seizures could be safely managed for these patients and to enable them to live safely at home or in supported living settings.

8. In June 2021, the Specialist Consultant left and the service was discontinued. The Health Board sent a proforma letter to patients (in Easy Read) informing them about the end of the service in June/July 2021. There were no alternative arrangements in place.

9. Following the departure of the Specialist Consultant, the Community Team for Learning Disabilities (“CTLD”) undertook a desktop review in order to identify the number of patients affected by the loss of the service. The figures given in different documents vary slightly. I have therefore taken the figure given by the Health Board in its formal response to my office. This identified 163 ‘active’ patients on the LD Epilepsy clinic list.

10. The Health Board said that a clinical review was conducted in 2022. This was done by either the local CTLD clinical staff or by a Consultant LD Psychiatrist in April/May 2022. In its response to my office the Health Board said that, as a result, some patients were referred to Neurology and some referred back to their GP. The Health Board confirmed that all the active patients from the Specialist Consultant’s list remained open to CTLD monitoring and annual reviews of their Epilepsy Management Plan and Risk Assessment. In those cases where there had been no seizure for 2 years or more, patients had a first aid plan. It was noted that all Epilepsy Management Plans were reviewed within CTLD, prioritising those individualswho had not been seen within the previous 12 months. Audit forms were updated to ensure that there was a current management plan, risk assessment, rescue medication plans and Valproate (medication used to treat epilepsy) – Annual Risk Acknowledgement Form for all patients where indicated.

11. The Health Board further explained that a LD Epilepsy Nurse Specialist (“LDENS”) was now in post (based in the Epilepsy Nurse Service) to support patients who were under the CTLD service and Neurology care. In addition, information and guidance had been sought from SUDEP Action [a charity which works to prevent deaths from epilepsy] to assist with risk assessment and clinical management advice.

12. The Health Board accepted that it was not able to continue the service after the departure of the Specialist Consultant in June 2021, and currently did not provide a Specialist LD Epilepsy service.

13. In January 2023, the Health Board produced a report outlining its plan for proposed improvements in its LD Service [Footnote: Transforming Learning Disability Services; Report to Board Meeting 26 January 2023]. This would align its LD Services with the Welsh Government’s “Improving Care, Improving Lives” programme and the associated Strategic Action Plan (2022-2026) for Wales (see paragraph 6). The Health Board’s report referred to the lack of a Specialist LD Epilepsy Service and the review of patients undertaken to ensure that all have Care and Treatment Plans or LD Care Plans.

14. The Health Board explained that:

“Following advice from the Clinical Audit Team, a new system of review and audit has been introduced for Care and Treatment Planning (CTP) through the supervision system. Team Managers review sample CTPs utilising Quality Assurance and Professional Development (QAPD) tools which measure the quality and content of the CTP. Audit forms for Epilepsy management have been updated, to identify whether there is a management plan, risk assessment, rescue medication plan and Valproate – Annual Risk Acknowledgement Form (ARAF) in place.”

15. As part of the response to the complaints and to inform the shape of future services, an external review (“the External Review”) was commissioned; this was led by a Consultant in Developmental Neuropsychiatry and Clinical Director at an NHS Trust in England. The interim review report (“the Report”) was completed in June 2023. The review considered the future development of the service and made recommendations for action in the short to medium term. These recommendations are set out in Appendix 3 of this report.

16. An update was given to the Health Board’s Quality Safety and Experience Committee (“QSEC”) meeting in June 2023 [Footnote: 2 The matter had previously been discussed at QSEC meetings of 7 December 2021, 12 April 2022 and 14 February 2023] that a draft version of the Report and recommendations had been received and that “engagement is underway with the Epilepsy Team, discussions are underway via the GP Cluster meeting and with the Quality Improvement Team.” A meeting with carers took place in October 2023 to discuss the Report and the Health Board presented its proposed action in response to it.

17. At the QSEC meeting of December 2023, the Management Response to the External Review was presented [Footnote: to read the response, click here]. The presentation stated that the improvement plan was “co-produced” following the carers meeting in October 2023. The presentation referred to the Learning Disability Improvement Programme, and also the development of an LD Epilepsy Care Pathway. It stated that a workshop had been arranged for January 2024 to progress the development of the pathway. An action plan (“the Action Plan”) was attached. In response, the QSEC Committee Chair highlighted the Committee’s main concern was the pace of progress and how this action might be accelerated. My Investigation Officer has found no further reference to the LD Epilepsy Service in the QSEC meeting minutes since then.

18. The version of the Action Plan provided to my office in November 2024 noted the progress on the key points from that action plan. These included progress towards providing a ‘bronze’ level of service (recorded as ‘in progress’), staffing review and seeking short term ‘like for like’ consultant cover in the LD Epilepsy field (recorded as ‘overdue’) and the development of a current LD Epilepsy pathway (‘in progress’). Other actions such as training, recruitment and training of ENS and part time pharmacist, analysis of stakeholder survey and support from other health boards were all noted to be ‘in progress’.

19. A proforma letter was sent out to patients in 2021 following the end of the Specialist Consultant’s service. This was in Easy Read and explained that the service had ended.

20. The Health Board responded to initial concerns (forwarded by People First on behalf of service users) about the withdrawal of the service. In its letter dated 24 September 2021, the Health Board noted that this was a “temporary change of services, but please be assured that the Health Board is fully committed to providing this service.” The letter assured that the Health Board was seeking a regional solution and revising its neurological services with a view to strengthening the delivery of epilepsy services (including access and pathway).

21. A response letter dated 7 December 2021, to the Chair of the Rare Diseases Implementation Group reiterated the regional approach and provided reassurance about the action being taken. This letter indicated that the External Review was being commissioned to review the best way forward.

22. In February 2022, the 7 complainants made formal complaints to the Health Board about the lack of service being provided to their relatives. The complainants had an online meeting in September 2022 with the External Review Consultant and Health Board staff.

23. A further letter (in Easy Read) was sent out to patients about the service in 2023. It explained that an improvement plan would be agreed with patients and carers to ensure that an epilepsy service would be provided by the Health Board. It explained that, in the interim, patients could contact CTLD.

24. The complainants wrote to the Health Board’s Chair detailing their lack of confidence in the Health Board and its actions in March 2024. The Health Board’s Chair responded on 28 February 2025, apologising for the delay which was due to an oversight during a period of transition of Chair. The Chair reiterated the progress the Health Board had made in relation to the provision of a LD Epilepsy Service. In the meantime, the complainants had referred their concerns to my office on 31 May 2024.

25. The complainants stressed how vital the Consultant’s specialist LD Epilepsy service had been. They outlined that the service had enabled complex and vulnerable patients to be able to safely remain at home. The service also provided invaluable support to them as carers to enable them to properly support their adult children, and manage their conditions. This meant fewer emergencies and hospital admissions. It also meant that they, as carers, knew where to contact when there were concerns, they needed support or more detailed advice was needed. Currently there was no specialist service in place. They acknowledged that they could try to contact the LDENS, but it was difficult to get any response within a reasonable time frame, and there was no alternative pathway for specialist epilepsy advice or support.

26. The complainants described that the service stopped suddenly. They were not informed and there was no clear indication about who was going to take over the care previously managed by the Specialist Consultant. They also felt aggrieved as they were aware that the Specialist Consultant had offered to come back to assist the Health Board with reconfiguring the service, but this had not been taken up by the Health Board.

27. The complainants did not just raise concerns about the lack of current care for their relatives. They remained concerned that there was no service or pathway for any existing or new patients. Those who had been referred to the general Neurology service often faced long waits, a non-specialist service for LD patients and a lack of continuity of care. They referred to the difficulty in contacting or accessing advice and support when it was needed. They stressed how vital this access to specialist advice was to support them in their caring role. This enabled managing the complexity of their relatives’ symptoms and the minimising of SUDEP. This access to specialist clinical advice and support had been removed.

28. Finally, the complainants were dissatisfied with the response that the Health Board had given to their complaints. Their view was that there had been insufficient action taken to reinstate or replace the service when it ended. They had not been kept informed and no explanations as to what was going to be put in place had been given. There was still no service in place. Whilst there had been some engagement with the Health Board during the period when the Report was issued, there appeared to be no concrete action as a result and their view was that any updates or progress since that point had stalled.

29. A summary of individual accounts from 6 of the complainants about their experiences is contained in Appendix 1.

30. In its response to my office, the Health Board explained that there had been various discussions over the preceding years about the continuation of the service. It noted that the Specialist Consultant’s unique skill set meant that it would be “near impossible to replace him and the bespoke service he was providing.” When the Specialist Consultant resigned from his role in June 2021, there was funding for the continuation of the service. However the Health Board was unable to recruit a like-for-like replacement, as there are very few specialists with the same expertise and knowledge. Therefore, the Neurology and Learning Disability Teams worked together to ensure patients received continuity of care, delivered by either their GP, a CTLD Doctor or a member of the Neurology Team.

31. The Health Board stated that discussions also took place regarding development of services under ‘A Regional Collaboration for Health’ (ARCH). This considered a collaboration between three strategic partners; Swansea Bay University Health Board, Hywel Dda University Health Board and Swansea University and covered the local authority areas of Ceredigion, Pembrokeshire, Carmarthenshire, Neath Port Talbot and Swansea. However, the Health Board stated that this approach could not be agreed, because the management of LD epilepsy patients in Swansea Bay University Health Board (and other Health Boards in Wales) sat under the MHLD [Mental Health and Learning Disability] service as opposed to the Neurology Service. Therefore, the Health Board’s Commissioning Team were unable to progress this option through Neurology Services.

32. The Health Board stated that no other Health Board in Wales had been able to replicate the service provided by the Specialist Consultant due to him being the only professional undertaking these duties. All other Health Boards have continued to provide the service through their MHLD teams.

33. The Health Board explained that, following the Specialist Consultant’s departure, the CTLD undertook an immediate review of all the clients on the Specialist Consultant’s clinic lists. Four clinic lists appeared to be in use, these were cross-referenced to produce a single complete list of 175 clients. This comprised clients known to the LD service and others who were not known to the LD service. A desktop review was completed of all 175 clients and 12 were removed as they had either moved away from the Health Board area (5); were deceased (4); were not known to CTLD and the GP confirmed they were managing the epilepsy (2); or, in one case, the patient had already been seen by a neurologist who removed the diagnosis of epilepsy.

34. Of the remaining 163 clients, 6 were completely unknown to LD services. In 4 of the cases, the CTLD Manager felt a nursing review should be offered to the individuals, which was duly undertaken. In the remaining 2 cases, the GP was contacted and it was confirmed that they were medically managing the epilepsy. Since this initial desktop review, all 163 clients underwent a further detailed review of their medical management with either a LD Consultant Psychiatrist as part of a specialist epilepsy clinic conducted during April and May 2022 (68 in total) or by the Consultant Psychiatrist and nursing team in each CTLD.

35. As a result of the review, either referrals to Neurology or to the GP were then made. 30 clients were also referred to the LDENS for follow up, in addition to a referral to Neurology. The Health Board confirmed that all 163 clients remained open and active to the CTLD with either:

• An annual review of their Epilepsy Management Plan and Risk Assessment, or
• A First Aid Plan for Epilepsy (where there has been no seizure for 2 years or more).

36. The Health Board confirmed that it “does not provide a specialist LD Epilepsy service. However, we employ a LDENS who supports our CTLDs, Neurology and Primary Care Services. The Health Board has employed an LD Pharmacist who works alongside our CTLDs and the LDENS.”

37. It stated:

“All [of the Specialist Consultant’s] existing clients including those referred on to GP or Neurology continue to have an annual review from either a Community Nurse in the CTLD or the LDENS. The LDENS role was created in response to the need for a specialist nurse with the skills and expertise in epilepsy that would either support CTLD Community Nurses with complex cases or manage the case itself and would provide a natural link between Primary Care, CTLD and Neurology. An LD Pharmacist role was also created to add additional support to the LD service. Part of this role supports the epilepsy work and includes undertaking the Annual Risk Acknowledgement Form for individuals prescribed Valproate, which would otherwise require completion by GPs as the prescriber.”

38. In a further response to my office in April 2025, the Health Board confirmed that:

“The impact of [the Specialist Consultant]’s departure from the LD Epilepsy Service highlighted the risks to any service that is reliant on a single member of staff to deliver patient care, as a single point of failure. Alternative clinical expertise was explored; however this is a specialist area with limited expertise. As a result, and with the support of the LDENS and Neurology Services, the Health Board is delivering alternative safe and sustainable care for this patient cohort. As you are aware, a Learning Disabilities Service Improvement Programme (LDSIP) has been undertaken and a new service model developed. The Service Improvement Programme included an engagement process that gave stakeholders opportunity to feedback on service model options. Themes and feedback were presented to Public Board in May 2023 and the Board gave approval for further engagement to be undertaken with stakeholders to inform the functions and specification of the LD Service. The new service model provides a health facilitation and educational approach to supporting mainstream health services to ensure that people with learning disabilities receive fair, equal and person-centred access to health care. The development of clinical pathways will support this approach. A paper which summarised progress to date of the LDSIP and included the nursing and allied health professional posts that would be required for the new structure was presented to Executive Directors in December 2024. Approval was provided and recruitment is now underway. A Patient Initiated Follow Up (PIFU) is currently being developed for those who access CTLD nursing. This will be an annual review of their care plan and risk assessment, which strives to better support individuals and carers to have ownership of their care plan and to initiate a review when needed.

The LDENS has benefitted from the support afforded by the professional lead. The knowledge and experience required for this role is maintained through attendance and participation in local and national epilepsy peer forums and they are currently undertaking Epilepsy Studies with Edinburgh Napier University. The LDENS provides CTLD’s with specialist advice, support, and consultation needed to develop care plans for those individuals with more complex epilepsy needs. All Community Learning Disability Nurses (CLDNs) have epilepsy and buccal midazolam [a type of emergency medication used to stop prolonged seizures] training every 2 years, provided by the LDENS. The Learning Disabilities Service has recruited a learning disability non-medical prescriber pharmacist, who supports CTLDs and the LDENS with specialist advice regarding anti-epileptic medication, associated side effects and medical interaction. Oversight of the improvement plan is through the Mental Health Learning Disabilities Quality Safety and Experience Group (QSEG) and is due to be reviewed at the next meeting in April 2025. Service evaluation work is also planned but has not yet commenced. Once completed, the evaluation work will also be reported through MHLD QSEG.”

39. Having seen a draft version of this report, the Health Board further explained that all epilepsy care plans, risk assessments and rescue medication plans have always been managed by CTLD nurses and this responsibility was not altered by the cessation of the LD Epilepsy Service. All care plans have a contact number for the local CTLD and support can be accessed via CTLD, as was the case for contacting the LD Epilepsy Service.

40. The Health Board confirmed that the current caseload of the LDENS (as at 2025) is 210 cases under neurology care, and 27 cases waiting to be seen or having been seen by neurology in the last 4 months. It clarified that GPs can refer patients to neurology; the current wait time for neurology being 11 months. If a neurologist believes that specialist input is required, they are able to refer to the Specialist Epilepsy team in Swansea Bay University Health Board (“SBU”).

41. My Investigation Officer has compared the information given by the Health Board about the review of the 7 complainants, with the complainants’ accounts of their own individual experiences.

42. From the accounts provided, it is clear that the Health Board notified service users via a proforma letter that the LD Epilepsy Service had ended. This appeared to be around June 2021.

43. The Health Board has stated that a review took place of all patients. There is scant evidence about the nature of this review.

44. One patient (Mr X) was referred to Neurology in May 2021 following a Health Board review. This appeared to follow a routine LD Psychiatry review appointment in May 2021 (before the end of the LD Epilepsy service) rather than as a result of a review appointment after the end of the service. The GP was informed of this referral, and Mr X was seen by a locum Neurologist on 13 November 2021.

45. One patient (Mr T) was reviewed by a LD psychiatrist in September 2021 [from the documentation this appears to be part of his ongoing care reviews] but no referral to Neurology was made as his seizures appeared stable. Mr T’s GP subsequently referred him to a LD Epilepsy Service out of area (he was seen in May 2022) because he had experienced further seizures.

46. Of the other 5 patients, I cannot see any evidence of a clinical review by Health Board staff or of a specific letter to their GP about their epilepsy/neurology care. In all these cases, referrals for secondary care Neurology involvement were made by their own GPs because there had been no intervention or alternative pathway of care suggested by the Health Board. The Health Board may have intended to do this with some patients following the complaint, but any arrangements, if they were intended, were so delayed that the patients’ GPs had already had to make those referrals directly. I have seen no correspondence to inform any of these complainants or their relatives about any desktop or clinical review or arrangements for ongoing epilepsy care.

47. Of the 7 patients who were under the care of the Specialist Consultant and complained to my office, only 1 was referred for Neurology care by the Health Board for management of their epilepsy. The other 6 appear to have been assigned GP care, and subsequently had to be referred by their own GP, either to the Health Board’s general Neurology referral pathway (3 patients) or via a direct referral to a LD Epilepsy service out of area (3 patients).

48. Of those who were referred by their GPs to the Health Board’s own general Neurology service, one patient was seen by that service in November 2022, the other 2 being seen in March 2023.

49. I have not included in this report every single detail considered by my Investigation Officer, rather it summarises the events and the current situation. I am satisfied that nothing of significance has been overlooked.

50. I should start by acknowledging that the LD Epilepsy Service provided vital care to its patients and their carers. This is a vulnerable group of patients with complex interacting needs, and the service enabled their care to be safely managed at home or in care placements.

51. Whilst not specifically part of this investigation, it is clear from the evidence I have seen that the continuity of the service had been discussed and considered for several years prior to 2021. In response to the complaint, the Health Board has repeatedly stated that the reliance of the service on the skills of a single individual (in this case, the Specialist Consultant) was a risk. Despite this, the Health Board had no plan in place concerning the continuation or resilience of the service whilst it was running. This was remiss.

a) The Health Board did not review patients’ needs in an adequate and timely manner and tell them what alternative provision would be in place to meet their specialist needs.

52. It is clear that the Health Board did inform patients that the service had finished. However, I have seen no evidence of any clear correspondence to indicate what arrangements were being put in place for each patient and who would be taking responsibility for their care. The Health Board has stated that it reviewed each patient. However, I have seen scant evidence of this. Indeed, of the 7 complaints made to my office, only 1 patient was referred to the Health Board’s Neurology service by the Health Board’s clinical staff, and this appeared to have been part of an ongoing LD psychiatry review. The other 6 were all referred by their GPs either after experiencing seizures and/or because more specialist input was needed for their epilepsy control. I am satisfied, from the evidence I have seen, that the Health Board did not appropriately review and provide an alternative service to this vulnerable group of patients. The patients, who all have complex needs, were in effect left, without notice, with the services provided by their GPs and CTLD. No acceptable alternative care arrangements or support were put in place. I am satisfied that this amounts to maladministration and service failure.

53. The result of this has been considerable additional pressure on carers, GPs and other support staff. 6 of the 7 complainants had to be referred to secondary care by their GPs, having been left with no epilepsy service as a result of the Health Board’s actions. I note that 3 of these now see specialist consultants outside of the Health Board’s area, as there is no local service available to meet their needs. The carers have described how they felt abandoned and left to struggle alone by the lack of communication and service. The role of a carer is demanding enough. The sudden removal of a key support system and not knowing where to turn for specialist advice, or indeed whether it is available at all, will only have added to the stress for this group of carers and vulnerable patients. The carers have described an isolating experience, not knowing who is responsible for their relatives’ care or how to access advice and assistance. On top of that, the complainants had to pursue a lengthy complaint process with the Health Board with no discernible outcome.

54. The lack of service provision to LD epilepsy patients, poor communication and the slow response to the complaints represents a significant injustice to the 7 complainants to my office. I am also mindful that there may be other patients or carers experiencing a similar service failure. I uphold the complaint.

55. In relation to the complaints, the Health Board’s response, in commissioning an External Review was appropriate; however, it has not responded to the individual circumstances of the complainants, nor has the External Review resulted in any significant improvement in the situation for them. It is therefore unsurprising that this has eroded the complainants’ trust in the Health Board’s responses or that any positive action will result.

56. I also highlight that my predecessor issued a public interest report (see paragraph 6) against the Health Board in 2021 about a similar issue of poor service planning and the failure to take prompt steps to make arrangements to meet the clinical need of patients when a service ended. Whilst this was in a different service area, it is of concern that the issues in that complaint were similar to those which have given rise to this complaint.

b) The Health Board still has no plan in place to provide a service which would be able to meet the health needs of this vulnerable patient group.

57. The commissioning of the External Review was a reasonable response to the sudden stopping of the LD Epilepsy Service and the resulting complaints. However, any progress towards implementing the action plan resulting from the External Review has been exceptionally slow. This was noted by the Board (QSEC) in 2023. The last mention of the LD Epilepsy provision at a QSEC meeting was in December 2023. The Health Board’s recent responses to my office have not provided reassurance that matters have progressed significantly or that there is any clear plan in place. There still appears to be no clear and accessible pathway for those who may need to access LD epilepsy care. The current provision appears fragmented. Some patients access specialist provision out of area via individual referral. Those referred to the general Neurology service within the Health Board’s area have faced long waits for appointments and a general Neurology input which is not tailored to the specific needs of LD epilepsy patients. The consistency and continuity of care, which is so important for this group of patients, is lacking. The complainants in this case have cited the absence of support, that they do not know who to contact when advice or assistance is needed and if or when they will receive a response. They have said that they have had little contact with the LDENS. Their stated experience, following the end of the LD Epilepsy Service, has been frustrating, confusing and demoralising. This is a significant injustice to them. I uphold this complaint.

58. Other Health Boards in Wales provide access to a LD Epilepsy service, so it is concerning that the Health Board has been unable to provide this service to its patients, or to find a mechanism to do so in collaboration with other Health Boards or related services. It is now 4 years since the cessation of the LD Epilepsy Service and I have seen no evidence that the Health Board is able, or intends, to provide such a service or that a coherent and accessible pathway is in place for current or future patients to access this type of care elsewhere.

59. I recommend that the Health Board should:

a) Take immediate steps to progress its plans to implement a clear and accessible LD Epilepsy care pathway, in line with the External Review findings, so that all patients within its area can access care and support appropriate to their needs. It should obtain external professional clinical review to ensure the adequacy of the pathway and proposed provisions. It should update the Ombudsman about the action it has taken within 4 months of the date of this report.

b) Ensure that there are timescales attached to any action plan and that there is Board oversight of progress, in line with the stated timescales.

60. Within 2 months of the date of this report:

c) For each of the 7 complainants, provide a written apology for the lack of communication and lack of alternative provision put in place for the care of their relatives following the end of the LD Epilepsy Service.

d) Provide a comprehensive breakdown to each of the 7 complainants about the current care that is being offered to their relatives, the status of and responsibility for any ongoing monitoring/ care reviews/ risk plans, and who to contact for advice or concerns.

61. Within 4 months of the date of this report:

e) Conduct a thorough review of its LD epilepsy patient lists to ensure that all have up to date care plans/risk assessments and emergency medication plans, and that there are no LD epilepsy patients who have been missed or are currently still waiting for a neurology appointment. There should also be Board oversight of this audit to ensure that it is appropriately completed.

62. I am pleased to note that in commenting on the draft of this report the Health Board has agreed to implement these recommendations.

Michelle Morris
Ombwdsmon Gwasanaethau Cyhoeddus | Public Services Ombudsman

25 September 2025

Ms A

Ms A’s adult son, Mr T, lives with her at home. He has a genetic disorder which means that he experiences daily seizures and, in addition, weekly tonic-clonic seizures [seizures causing involuntary convulsions and unconsciousness]. She said that she has been able to manage Mr T’s epilepsy at home with the assistance and advice from the Specialist Consultant’s service.

Ms A stated that the service stopped suddenly (Ms A recalled a letter was sent in July 2021) and nothing was put in place to replace it. Ms A said that she was told to contact CTLD for any assistance.

Ms A said that, as a consequence, patients like her son were left without any provision. She explained that LD patients with epilepsy were at higher risk of SUDEP which is why an up-to-date emergency medication plan and care plan are needed. She explained that these plans are specific and detailed about the medication, dose and the maximum number of safe doses that can be given for seizure management in an emergency. She said that having these plans has kept her son out of hospital. In Mr T’s case, they were lucky that Mr T’s emergency plan had been put in place by the Specialist Consultant in 2021; (at the time of this investigation) there was no signed updated emergency medication plan currently in place because there was no-one sufficiently qualified to properly review and sign the plan.

Ms A also stated that there was no longer access to any specialist advice or support. Previously she was able to contact the Specialist Consultant’s clinic. Now, she can phone and leave a message with CTLD, but it may be several days before she receives any response. Ms A’s view was that the lack of access to specialist help made hospitalisation for Mr T more likely.

Ms A said that some of the families made a formal complaint to the Health Board. Ms A said that as a result of the complaint, the Health Board agreed to undertake an external review of the service (the External Review). The Report was produced in June 2023 by a specialist consultant (from England) which suggested ways forward for the service. However, Ms A was disappointed that the report did not refer to the complaints that the families had raised. In addition, whilst there had been meetings since the Report, Ms A said that there had been no further action in relation to the report or proposed action.

Ms A expressed concern about the current lack of LD Epilepsy service. She said that she was not informed about what alternative care would be for Mr T. She said that Mr T experienced a cluster of 10 seizures at home in January 2022. This was able to be managed at home with paramedic assistance using the emergency plan in place (by the Specialist Consultant), rather than hospital admission. After this episode, Ms A contacted CTLD and was told that Mr T’s epilepsy care was now with his GP rather than consultant led. She had not been informed of this. She had assumed, given Mr T’s complex needs, that he would have been referred to the Neurology service and be on a waiting list for a neurology appointment, but he was not. Ms A said that because, due to previous treatment, Mr T sees a geneticist (out of area) it was suggested that his GP should refer him to a specialist consultant in Swansea Bay University Health Board (SBU) for management of his epilepsy. He now receives ongoing care from this consultant which Ms A is happy with. However, it remains that there is no similar service within Hywel Dda University Health Board.

Ms A voiced her concerns about patients who did not have families or support workers to advocate for them. She felt that patients had been merely transferred back to GP care without being told. She explained about the high risk of SUDEP for these patients. She was not aware who had done the review in Mr T’s case, nor had she been told that his epilepsy care was to be GP led.

Ms A expressed her concern for new patients entering the service, as there is no specialist LD Epilepsy service. Currently there is no joined up working between Psychiatry and Neurology (the Specialist Consultant used to hold joint clinics) and there are long waiting lists for general neurology care. She said that despite a lot of input from her and other carers, there had been little progress despite the External Review and the complaints. There was still no service in place. She said that the nursing staff at CTLD do not have the expertise to deal with the epilepsy of these complex patients.

Ms B

Ms B’s adult son, Mr U, lives in a care placement within the Health Board’s area. He has autism and started seeing the Specialist Consultant due to experiencing absence seizures in 2019. He went on to attend a Residential College out of area for 3 years so his care was transferred to a specialist epilepsy and autism consultant at SBU. He is still under the care of that consultant, despite the fact that he is now living permanently back in the Health Board’s area, as there is no appropriate service locally to manage his care.

Ms B described the total lack of communication since the service stopped in 2021. She said that Mr U was not included in any of the communication as he had been discharged from the Specialist Consultant’s care (because he had moved out of area for college). Now there is no service locally for him to be referred back to.

Ms B said that Mr U has an annual review and medication review with the SBU consultant, and he is available for advice and responds to any queries very quickly. However, Ms B’s view is that this service should be available for him within the Health Board, but there is nobody who has the expertise to support patients such as Mr U or others with similar needs. Ms B described an occasion last year when Mr U attended a local hospital for an MRI scan and the lack of support to assist with Mr U’s needs and to keep him calm. She referred to the difficulty accessing health care without this support locally. She said that they were told that the LDENS would attend but she did not come. [The Health Board has clarified that this involved CTLD and liaison nurses, not the LDENS].

Ms C

Ms C cares for her adult son, Mr V, at home. He has carers to assist with his care during the day and night. He has a purpose built room at home, to minimise the risk of injury and which can accommodate a carer’s bed, so that Mr V can be observed in case he suffers seizures. Ms C explained that Mr V has violent seizures and often suffers injury as a result (he used to have to wear body armour because of this).

Ms C explained that Mr V used to receive care in specialist hospitals in London due to his needs and the family would travel up and down from Wales to see him. However, with the help and expertise of the Specialist Consultant and his team, they were able to bring him home. She said that the Specialist Consultant had used his knowledge to gently reduce Mr V’s old anti-convulsant medication which sedated him. The careful and gradual changes in his medication enabled Mr V to live a more productive life at home. Ms C stated that the transfer home and the expert care and attention meant that Mr V gained a quality of life that he had not had before. She explained that Mr V was at high risk of SUDEP and can become destabilised very quickly. When the Specialist Consultant’s clinic was running she was able to call the nurse/clinic who would offer support and advice; if necessary, medication could be tweaked very quickly. Ms C also highlighted that the clinic provided holistic care, including advice on diet, rest, post-seizure aftercare as well as medication management and training, and support for carers. These are all individual to the patient and enable small, but positive, changes to be made. She stressed that the continuity of care and knowledge of the patient on a holistic level were vital. All these aspects of care were invaluable to her as a carer and contributed to keeping Mr V out of hospital.

Ms C said that she did not receive a letter about the end of the service. She found out when Mr V had lost a tooth (following a violent fit at home) and she had tried to contact the service to get advice about care and medication. She realised that there was no one to contact to answer her medication queries. She said that she later received a general leaflet that the service had ended. She said that she was never told formally that Mr V had been transferred to GP care.

Mr V was seen by a consultant neurologist in November 2022. Unfortunately he did not have any specific experience with LD epilepsy and an epilepsy nurse was supposed to attend the appointment as well, but did not arrive in time. Mr V has had no further appointments. Mr V does not have a consultant currently. His care plans and emergency medication plan are the same as those completed by the Specialist Consultant’s service. He remains on the same medication which is prescribed by the GP although the drugs are being prescribed outside of BNF [British National Formulary, which lists a drug’s recommended uses and doses] guidelines. Ms C said that Mr V has a lot of anti-convulsant medication, but has no blood tests or monitoring of this.

His GP has referred him directly to a specialist consultant at SBU so that he can be reviewed because there is no provision locally.

Ms C described that, from her point of view, the support had simply disappeared. She said there is no-one to contact for advice and assistance if there is a crisis with Mr V’s health or she needs assistance. Additionally there is no-one there to help her navigate the system to get Mr V the support he needs. She said that she is able to contact CTLD, which she has done about a reassessment for night time care for Mr V, but this has not materialised. She also raised concerns that the current LDENS’s experience and knowledge appeared to her to be on a very basic level and she was not able to advise and support those patients who may have complex needs. For instance, a totally inaccurate written assessment stated that Mr V could administer his own buccal midazolam (post seizure medication).

Ms C described herself as an experienced carer who has been caring for Mr V for many years at home; she now cares for him alone. She said that the previous service had enabled Mr V to have a quality of life but this support has now disappeared and as a carer she now has ‘nothing’. She was equally concerned for those patients who do not have family to advocate and care for them and for those new patients who do not now have access to specialist or appropriate care for their needs.

Ms D

Ms D’s adult daughter, Ms W, has complex health problems and a learning disability. She had been seeing the Specialist Consultant for 20 years and was last reviewed by him in 2020 before the service ended in 2021. Ms D described that Ms W used to have 120-150 seizures per month and needed high dose medication. Her seizure rate went down to fewer than 80 per month with the input of the Specialist Consultant. She also described that he worked with the family to minimise Ms W’s drug reliance.

Ms D explained that ischemic epilepsy is difficult to control, and presents differently from day to day; indeed Ms W’s seizure pattern had changed over the years from single seizures to cluster seizures (which are more difficult to manage); it was beneficial to have input from the same consultant who was able to monitor and adjust Ms W’s drug regime accordingly.

Ms D explained that Ms W had lived at home full time, with access to day care, until October 2020 when she moved into a residential care placement due to Ms D’s own health problems. Ms D said that if she had been supporting Ms W at home without the Specialist Consultant’s service, she would not have been able to deal with the lack of epilepsy care on her own due to Ms W’s complex seizure pattern and medication regime. She said that small changes in Ms W’s medication regime, including how it is administered, make a big difference in terms of effect. Ms W is not able to communicate how she feels.

Ms D recalled receiving a letter in 2021 that the Specialist Consultant was leaving. Because she had been under the care of the Specialist Consultant for so long, Ms D said that it did not occur to her that Ms W would not have access to consultant care. However, she was informed by Ms W’s care provider that Ms W was now under GP care. She was not told directly by the Health Board.

Ms D said that Ms W’s first consultant appointment following the end of the LD Epilepsy Service, was with a locum consultant neurologist in February 2023. Ms W was then seen in November 2023 by one of the Health Board’s consultant neurologists; as a result a referral was made to an epilepsy specialist (within SBU), who reviewed Ms W in June 2024. She remains under his care (6 monthly appointments) and Ms D said that she was relieved that Ms W now has the same consultant who reviews her and oversees her care.

Ms E

Ms E’s adult son, Mr X, lives at home with her and also attends a specialist day service. He is non-verbal and has significant needs including autism, OCD and severe behavioural issues. Mr X experienced some big epileptic seizures in around 2020 (during lockdown) which is when Mr X’s then LD psychiatrist sought assistance from the Specialist Consultant who assisted with his management. She said that she was able to get advice and support over the phone when there were concerns. She was also able to send videos to the team and discuss symptoms to help with management.

Ms E confirmed that she was informed verbally that the service was ending because the Specialist Consultant was retiring. However, she has since become aware that he had offered to come back. Whilst she could not recall a specific letter informing her about the end of the service, she said that she probably received the circular letter.

Ms E said that she is not aware who manages Mr X’s care currently and she has little contact with the CTLD. She does not know who to contact if there are health concerns. She said that she used to contact the social worker to get assistance with any issues, but since Mr X had transferred from children’s to adult services, she has never met the new social worker. She commented that there does not seem to be one health professional who knows Mr X. She had been sent a copy of a care plan, but no one had spoken to her about this.

Mr X was seen by a locum consultant psychiatrist in 2023, and then by a neurologist in early 2024. She is not aware when he is due for another neurology appointment. He was reviewed a psychiatrist in October 2024. She said that, in terms of his epilepsy, his big seizures are currently well controlled, although there are concerns about absences.

She was aware that the LDENS had visited Mr X’s day service in October 2024 and spoke to staff, but the LDENS has not contacted Ms E directly or spoken with her.

Ms F

Ms F explained that her adult daughter, Ms Y, lives Monday to Friday in supported living and then spends weekends at the family home. Ms Y has diagnoses of epilepsy, autism and cerebral palsy and leads an active life. Ms F said that Ms Y was happy to engage with the Specialist Consultant. All consultations were with the Specialist Consultant and a specialist nurse. Ms F said that she was confident in raising any concerns about Ms Y’s condition or discussing any alteration to medication, and that the pros and cons of any treatment options would be fully considered. It was easy to contact the service with any concerns and she would get a prompt response, often the same day. Ms F described the ‘amazing’ standard of care that the service provided.

Ms F recalled that the family received a circular in 2021 saying that the service was ending because the Specialist Consultant had retired. She said that Ms Y’s GP was not aware that the service had ended and the GP relied on the Specialist Consultant to review the prescribed medication.

Ms F said that, after the LD Epilepsy Service ended, Ms Y was not reviewed by a consultant neurologist until 2023. She said that she realised that the consultant neurologist had not dealt with a patient with learning disabilities before and this has made the appointments difficult. There was no LD nurse present to assist with communication from a LD perspective. In terms of clinical support, she has no means of contacting the consultant neurologist directly. She is able to contact CTLD and leave a message. She said that CTLD used to monitor seizures, but that this is not done any more. Ms F said that she relies on Ms Y’s GP who is very supportive and helpful. Alternatively she will approach social services for assistance if she needs urgent intervention as she is able to contact them more easily and they have more clout to get answers and/or access services.

Ms F said that the LD Epilepsy service gave her the confidence to know that when she was worried about any aspect of clinical care, she was able to get an answer and felt supported in her caring role. This has now disappeared. Ms F acknowledged that Ms Y’s epilepsy was not as acute as some of the other patients, and therefore she was concerned for other patients, with more acute epilepsy, who lacked access to any service.

Ms A and Mr T

Mr T was reviewed by a LD psychiatrist in September 2021 (seizures were noted to be stable) and then in June 2022 in line with his normal psychiatric review appointments. It was noted that he was accompanied by Ms A at these appointments. There was no referral to Neurology made by the Health Board. The Health Board stated that no letter was sent to Mr T’s carers outlining care arrangements as Ms A had accompanied Mr T at all appointments.

It was noted that Mr A’s current plan was out of date but this was in hand with the LDENS.

Mr T was currently being seen by a LD epilepsy consultant in Swansea Bay University Health Board (“SBU”). [He had been referred to this consultant by his GP following seizure activity].

Ms B and Mr U

The Health Board said that Mr B was not reviewed as part of the review of the Specialist Consultant’s patients as he had been discharged in April 2021, since it was not thought at that point that a definitive diagnosis of epilepsy could be reached. He was subsequently referred to the SBU LD Epilepsy Service by his GP in April 2022 and receives ongoing care under a consultant from that service. The Health Board stated that there is follow up with the LDENS.

Ms C and Mr V

The Health Board said that Mr V was last seen by the Specialist Consultant in April 2021 and was due for review in 6 months. Mr V was regularly monitored by CTLD nursing staff.

The Health Board stated that a review with a LD Psychiatrist was offered in April 2022, but Ms C and Mr V did not attend. In any event, a referral to Neurology had already been made by Mr V’s GP in January 2022. As it was a GP referral, Ms C would not have been sent a letter about ongoing arrangements as she would have received information directly from Neurology/Mr V’s GP about ongoing care arrangements.

Ms D and Ms W

Ms W was last seen by the Specialist Consultant in December 2020. The Health Board stated that Ms W did not appear to have had a care review after the end of the Specialist Consultant’s clinics. In February 2022, Ms W was referred to Neurology by her GP following a hospital attendance due to a seizure cluster. This was chased by CTLD in September 2022. Ms W was seen by a consultant neurologist (at SBU) in March 2023. The letter detailing that clinic appointment (sent to Ms W’s GP) noted ongoing seizures which were difficult to control, and that Ms W “needs an epilepsy care plan, and a copy of this letter will be sent to the Epilepsy Nurses, with the polite request to get in touch with [Ms W]’s family and formulate a care plan.”

Ms E and Mr X

The Health Board noted that M X was reviewed by a LD Psychiatrist in May 2021 and a referral to Neurology was made as a result. He was seen by a Neurologist in November 2021 and remains under Neurology care in HDUHB.

Ms F and Ms Y

The Health Board confirmed that Ms Y was reviewed by the Specialist Consultant in January 2021 and was not due for a follow-up review for 12 months. She has no input from LD psychiatry so any review would have been by her GP. In March 2022, her GP referred her to Neurology and she was seen in March 2023. She remains under Neurology care. No specific letters were sent to Ms F or Ms Y about care arrangements.

Ms G and Mr Z

The Health Board stated that Mr Z was last seen by the Specialist Consultant in 2020. In February 2022, Mr Z’s GP referred him to Neurology as well chasing up the Specialist Consultant’s clinic. He was reviewed by a LD psychiatrist in March 2022 when his epilepsy was noted to be well controlled. He was seen by a neurologist in March 2023. For all the above patients, the Health Board stated that there is ongoing monitoring and an annual epilepsy profile review by CTLD. It further said that the LDENS had been involved in follow up for Mr T, Mr V and Mr U.

“Post [the Specialist Consultant’s] resignation there was a lack of understanding of epilepsy complexity in intellectual disability (ID) at a senior management level particularly in the learning disability service. This resulted in lack of clinical leadership, clarity around responsibility of this complex group of patients and a gulf between management and clinical care delivery. In addition, there had been a lack of feedback for families or regular communication and meetings being conducted with representatives of families about the ongoing challenges encountered in continuity of service delivery (or the lack of it). This is till the current exercise for the report commenced.

Having discussed all matters with all stakeholders the following recommendations need to be considered:

Immediate concerns

While temporary measures have been put in place since June 2021 there remains significant gaps in the delivery of specialist epilepsy reviews for all individuals who were part of the service provided by [the Specialist Consultant] and potential new referrals. This does lead to some urgency to install the short-term plan as below to work towards achieving the “Bronze” level standard in the first instance. Ideally it would help to mitigate this risk by seeking short term employment of a “like for like” expert in this field. Realistically such resources are not widely or easily available. It needs to be acknowledged that this could be challenging given the current shortage of such specialists. However it would be important to show that all reasonable attempts have been made by the commissioners including considering re-engaging [the Specialist Consultant’s] services in a suitable capacity or attempting to engage a suitable locum medical consultant with experience of working with PWID [people with intellectual disability] and epilepsy.

Short term plan (6 months)

There is an agreed goal and aim from the commissioners to build the current service to a 3-star level as outlined in the Step Together guide within the year. This can be achieved by following the table in page 46 in the Step Together guide outlined in Appendix 3. The pathway which was in existence pre June 2021 needs to be reviewed and as feasible adopted. It would be helpful to review if the pathway that was in existence could be re-implemented while broader changes/modifications are considered for local need. The previously existent pathway is apparently similar to those in place and currently in use in Powys and Swansea Bay Health boards and thus could be implemented swiftly. Consideration needs to be given as to why there were challenges for its continued delivery in HDUHB. It would be expected that there were:

a) Patient factors – complexity of individuals.

b) Clinical factors – lack of training and competencies particularly in the learning disability service.

c) Organisational factors – issues with organisational culture, management roles (training for management for understanding epilepsy concerns in PWID) and resource deployment.

1. The expectation would be for the new service to oversee the complex clinical pathway required for the current patient population. The expectation is that the service clinicians would have clear clinical roles and job descriptions put together to help support complex individuals currently without a dedicated service. The clinicians need to take forward the service towards a sustainable and safe working model to satisfy in the first instance a 3-star service over the coming year with reference to Step Together. This would require identifying medical leadership role from psychiatry and /or neurology to help redesign service needs and to also provide confidence to existing PWID and their families given their recent emotional trauma. This medical leadership role is envisaged to have a stronger engagement with senior management […].

2. There would be an appointment of a suitable administrative person to support the medical leadership role and the team.

3. Risk screening matrix for emergencies would be developed by the team in keeping with the NICE 2022 guidance, Step Together and NHS England Right Care Toolkit.

4. The immediate focus would be on safety to ensure people in the service and those coming into the service are safe. Suggested actions include contacting SUDEP Action and asking for the permission for use of the SUDEP and seizure safety checklist for all people in the service. This would also act as a surrogate measure for risk change.

5. Consider allocating a pharmacist to work with the clinical team to understand and guide on drug and complex prescribing in this population. It would be helpful to have treatment protocols developed for high-risk individuals.

6. The current epilepsy nurse job description needs to be reviewed by […] a suitable specialist epilepsy nurse recommended by Epilepsy Specialist Nurse Association (ESNA). The expectation would be to provide a brief report outlining the strengths and weaknesses of the current position holders, competencies as matched to the job description and workload. For any identified areas of the position holder’s development, mentoring from an experienced specialist epilepsy nurse could be procured from ESNA. This could be part of the professional development of the individual.

7. To put in place emergency guidelines and protocols for all those eligible for rescue guidance such as Midazolam. There also needs to be a protocol in place for rapid review and oversight of those who are admitted to an emergency department. Gaining the expertise of an epilepsy specialist nurse via ESNA on this matter could be helpful.

8. The current situation appears to have arisen due to difference in learning disability staff viewpoints and existing organisational culture. Being mindful of this, applied solutions need to ensure that staff stakeholders are included, confident, involved and supportive of these changes. This might require training, education and outlining of resources such as time in current job roles. Best practice guidelines such as Step Together and NHS England Right Care toolkit could help. This would provide resilience and sustainability for delivery of a high quality epilepsy care pathway.

Medium term plan (6 months to a year)

1. As part of understanding of the challenges within the service, a multi-stakeholder survey was conducted which has yet to be analysed. There were 37 replies in the first round and 3 in the second round. The results of these will form a baseline on the current understanding and expectations of the service. These could be presented to all stakeholders including experts by experience.

2. To use the results of the survey to empower workshops involving all stakeholders including experts by experience to discuss meaningful change.

3. The same survey i.e., the Purple Light Toolkit could be rolled out in another 12-18months’ time to understand how things have changed locally in the community and what are the critical gaps remaining.

4. A dedicated named service manager or equivalent to facilitate governance and operational developments of the proposed new team.

5. Consider a suitable model of care for delivering the epilepsy and ID clinical care. Ideally recruiting a specialist ID consultant with competency in epilepsy is desirable. However, there are significant challenges of such specialists being available in such a situation:

a) Consider the existing work force and supporting those psychiatrists working in the current ID service interested in physical health care in developing epilepsy skills and competencies. This should naturally be done as part of service redesign and include suitable job planning (based on work activity) and resource for any potential interested person. There needs to be good peer group and Continued Professional Development arrangements made.

b) Offer similar opportunities to neurologists or GPs interested in this clinical area as in point a. above.

6. It is worth the Health Board considering linking with the NHS England Midlands and Lancashire commissioning support unit. They have run a similar improvement programme (along with my involvement) following the death (SUDEP) of a vulnerable individual […] who had an intellectual disability and epilepsy. Eleven Integrated Care Boards have worked together to identify the areas of improvement. The learnings from this exercise can be incorporated going forward to the local situation. https://sudep.org/article/reviewfinds-death-clive-treacey-potentially-avoidable. There is a good learning template developed with engagement with national charities SUDEP Action and Epilepsy Action.

7. Collateral service needs such as expertise in specific genetic syndromes, specialism in newer ASMs, emerging technology, transition, working with primary care, paramedic engagements etc. would require updated policies.

8. Inter-service working will benefit from suitable policies, service terms of references and suitable business plans to ensure adequate service sustainability.

9. It is very important that future developments are co-produced ensuring input from patient and families. The lived experience of PWID and epilepsy and their families is essential to help shape future meaningful services.

10. Developments need a robust set of audit measures in keeping with best practice including NICE epilepsy guidelines 2022, Step Together and the NHS England Right Care epilepsy toolkit. This would ensure evidence is gathered around quality and provision of an epilepsy service specialising in support adults with intellectual disability.

11. It is important as part of the sustainability and resilience of the service that there is adequate provision for cross cover of the professionals in the service to account for planned and unplanned leave. This is particularly relevant in roles such as a dedicated epilepsy nurse specialist.

Conclusion

It was recognised by all parties that the recent concerns had caused a big fissure in trust and this requires rebuilding with the families and carers. The Health Board, families and clinicians involved, past and present, need to be commended for recognising the significant possibility of harm to a vulnerable cohort and showing willingness to take action on it. It was also recognised that there is no obvious way to replicate the service that had been on offer over the last 2 decades as it has been an “expert led approach” centred around [the Specialist Consultant]. However, any new service needs to take the opportunity of learning from his two decades of local service experience, the learned experience of families and ensure that it is supported by a diverse range of individuals thus making sustainability and resilience central to the service.”