The full document is now available for download. The Executive Summary, Conclusions, and Recommendations from the Review are below.
In 1996, the Scottish Office Clinical Resource and Action Group (CRAG) Working Group on Mental Illness made a series of recommendations that laid the foundations for the development of the existing service providing neurosurgery for mental disorders in Ninewells Hospital. The group recognised the role of neurosurgery for some well defined types of mental disorder.
Subsequently in 2000, a Royal College of Psychiatrists Neurosurgery for Mental Disorder report complimented a number of the CRAG findings, noting that “it would be unwise to allow neurosurgery for mental disorder to die out.” The foresight of the CRAG and Royal College reports has proved to have been invaluable, with the current review finding that the Advanced Interventions Service has provided a highly valuable service for people from across Scotland and the rest of the UK. The review recommends that the Advanced Interventions Service should continue to be nationally designated.
The review recognises the high quality of the service provided and the clinically significant improvements in mental health experienced by people with highly chronic and severe depression following a neurosurgical intervention carried out by the service. This is against the context of having tried a significant number of other failed treatments for their chronic and severe depression and/or chronic and severe OCD. Patient feedback about the Advanced Interventions Service has been very positive, highlighting the positive person‐focus of the service, the staff’s respectful approach to their patients, and the necessary mutual involvement in decision‐making about their package of care.
Clinical feedback on the Advanced Interventions Service has also been complimentary, with a high proportion of respondents to a review survey noting that their overall experience of the service was either ‘good’ or ‘very good.’
The review recommends that the service continues in its existing areas of good practice including its robust assessment process, in capturing patient feedback, in developing the evidence‐base in partnership with the University of Dundee, and in undertaking vigorous audit. A number of recommendations were also made to bring about further improvement in the service. These recommendations will assist the service to improve communication with the clinical community to better manage and develop referrals from non‐Scottish home nations, and to continue to benchmark across the UK.
The review recognises that the majority of the service’s activity to date has been nonsurgical, for instance; in providing comprehensive patient assessments, home visits,
treatment recommendations, an educational programme, and clinical advice to other clinical teams. This activity is acknowledged as entirely appropriate, and the review recommends that the service should be better recognised for this work. It is recommended that the service specification is amended to take this into account, and that the service reports more fully on these processes in the future.
Whilst out of scope of this review, the findings draw attention to a perceived inequity in provision of OCD services across NHS Scotland, which has an impact on the quality of referrals into the service, the ongoing management of the patient post‐intervention, and a low conversion rate to surgery. It is recommended that in order to appropriately recognise and develop tertiary OCD services, a mapping of service‐need and existing provision for people with OCD be undertaken by NHS Scotland or the Scottish Government.
Furthermore, whilst Scottish residents with OCD who require access to quaternary level psychopharmalogical and psychiatric services currently have access to services in England, it is apparent that there is the expertise to provide this level of service in NHS Scotland. The review therefore invites relevant services with appropriate expertise and capacity to apply to the National Services Advisory Group for national designation. If capacity can be developed to provide this level of specialised psychopharmacological, psychiatric and other treatments for OCD in Scotland, then NHS Scotland service providers should consider making an application to provide this level of service to the National Services Advisory Group.
It is hoped that developing the Advanced Interventions Service in the areas recommended by the review, and addressing these structural issues, will support the continuing successful provision of a high‐quality national service over the next five years.
The Expert Advisory Group and Review Board considered the evidence summarised within this report, as a basis for discussion and the development of recommendations. Following consideration of this evidence, the review commended the Advanced Interventions Service’s progress to date and recommended that the service continues to be nationally designated, and continues in its robust audit programme.
Every three to five years, National Services Division is required by the Scottish Government and NHS Boards to review whether each designated national specialist service continues to meet the criteria for national designation. This review considered the national Advanced Interventions Service against the criteria used by the National Services Advisory Group who recommend services for designation of national funding, or the de‐designation of existing services. To be recommended for designation services will be:
The Advanced Interventions Service is highly specialised and is recognised as a UK service, as one of three UK centres providing neurosurgery for mental disorder. It was deemed by the Expert Advisory Group that the Advanced Interventions Service clearly fits the criteria for national designation.
Safe service: “There will be no avoidable injury or harm to people from healthcare they receive, and an appropriate, clean and safe environment will be provided for the delivery of healthcare services at all times.
Effective service: “The most appropriate treatments, interventions, support and services will be provided at the right time to everyone who will benefit, and wasteful or harmful variation will be eradicated.
Patients proceeding to anterior cingulotomy or vagus nerve stimulation have high‐reported levels of chronicity, severity, disability and treatment‐resistance relative to the levels reported in the literature. Despite these high levels of chronicity, disability and treatment resistance, it is apparent that the service has worked well and has reported on good, predominantly (and on average) positive outcomes, with the majority of service users experiencing improvements including response and remission. It was noted that in the small number of cases where depression scores were worse after treatment than they were prior to it, without the intervention, service users may have experienced a greater worsening in their condition. The Expert Advisory Group concluded that both ablative neurosurgery and vagus nerve stimulation should continue to be offered by the national service within the current governance framework.
The positive feedback from the psychiatric community was also highlighted, with 82% of respondents who had used the service noting that their overall experience of the service was either ‘good’ or ‘very good.’
The Expert Advisory Group praised the holistic multidisciplinary approach of the service, and joint working with the University of Dundee which has supported the development of the evidence‐base for treatments for chronic and severe treatment‐refractory depression. Of note was the service’s continued commitment to robustly assess patients and ensure that their condition is significantly and sufficiently chronic, severe and treatment‐resistant, prior to offering ablative neurosurgery or vagus nerve stimulation as a treatment option. The Advanced Interventions Service should be commended for its work in ensuring that both patients, who have not fully satisfied these robust criteria, and their referring clinicians, are provided with a set of ongoing treatment recommendations for additional psychological and pharmacological management strategies.
Person‐centred service: “Mutually beneficial partnerships between patients, their families and those delivering healthcare services which respect individual needs and values and which demonstrate compassion, continuity, clear communication and shared decision‐making.
The service has demonstrated a person‐centred approach through its assessments, treatment and follow‐up levels. The review of existing casenotes in addition to undertaking psychiatric and psychological reviews assist the service to better understanding the person’s illness, and the impact that this illness has on their life. The service’s feedback sessions allow for further discussion between the service user and members of the service, and support the development of a mutual understanding of the person’s illness which informs a shared decision‐making process for ongoing treatments.
The service has worked well to capture feedback from outpatients and inpatients, and to use this data to continue to develop the service. This data provides evidence from service users that the service is person‐centred. The high‐quality of the service has also been acknowledged and is supported by patient and clinical‐user feedback, in addition to feedback from the wider UK clinical community with expertise in areas of mood and affective disorders.
The service has worked well to report robustly to patients, the public, the clinical community and National Services Division through its annual and mid‐year reports that are published on its extensive website.
In appraising the data collected for the review, it is clear that a number of NHS Boards have lower than expected referral rates into the service. On the other hand, the service’s host Board, NHS Tayside and NHS Fife have higher than expected referral levels into the service. The conversion rate to surgery of NHS Tayside patients indicates that there is a need to ensure that patients who would be part of regional specialist activity are accounted for separately to those who are part of the national specialist activity within the service.
It is acknowledged that people with chronic and severe treatment‐refractory depression and OCD have long and complex treatment pathways that can last many years. The anterior cingulotomy and vagus nerve stimulation provided by the Advanced Interventions Service should be seen to compliment and act as treatment augmentation to other treatments. Indeed, referring Consultant Psychiatrists retain clinical responsibility for the patient during the assessment process by the Advanced Interventions Service, and in implementing the service’s treatment recommendations.
The efficacy of treatment by the national service will be affected by the psychological, psychiatric and pharmacological treatments administered by the team retaining responsibility for the ongoing care of the patient following discharge by the national service. As this is the case, there is a need to continue to ensure close liaison between the national service and the team retaining responsibility for the ongoing care of the patient to ensure that approved treatment recommendations are followed.
It is noted that the Advanced Interventions Service is one of a low number of specialised centres in the UK for mood and affective disorders. Indeed the services provided by the Advanced Interventions Service place it at the top end of stepped care, making it a provider of a quaternary level service. The review’s Expert Advisory Group noted the service’s existing commitment to report transparently, and highlighted that it is important to continue to share data and benchmark with other units across the UK and internationally. Links between commissioners in National Services Division and their counterparts in England should be developed to support benchmarking and patient pathways across the UK.
The review has recognised that the vast majority of the activity within the service currently and legitimately focuses on undertaking comprehensive assessments and developing detailed treatment recommendations for patients and referring clinical teams. It is important that in the future, the service, National Services Division and referrers formally recognise this existing activity.
The national service is currently participating in a multi‐centre trial of deep brain stimulation (DBS) for chronic, treatment‐refractory depression. It was noted that there is currently an insufficient evidence‐base to support the inclusion of deep brain stimulation as a treatment for chronic and treatment‐refractory obsessive‐compulsive disorder or depression by the Advanced Intervention Service.
Both the Expert Advisory Group and the Advanced Interventions Service have highlighted the inequity in provision of OCD services across NHS Scotland which has an impact on the quality of referrals into the service, the ongoing management of the patient postintervention, and a low conversion rate to surgery. Whilst some clinicians in Scotland provide a tertiary level OCD service, there are a lack of consistently supported centres of expertise in Scotland.
The illness characteristics of patients being referred to the Advanced Interventions Service, and the proportion of patients identified as not having received all necessary treatments in full adequacy prior to referral, supports the view that there are structural issues regarding the provision of tertiary level OCD services in Scotland.
The high‐level mapping of services for people with conditions covered by the AIS found that a large number of units (38 units) across Scotland discharged low numbers of patients with classifications of Obsessive Compulsive Disorder covered by the Advanced Interventions Service. The units with the highest annual level of discharges on average discharged only 6 patients per year. The three units who were noted as discharging patients with OCD who had an inpatient length of stay of 3 years or over, all discharged on average, less than two patients a year with OCD, regardless of their length of stay. This indicates that these units are not formally recognised as tertiary inpatient OCD services.
When asked what tertiary services patients had been referred to for treatment‐refractory OCD, members of the Royal College of Psychiatrists in Scotland predominantly responded the AIS, with one respondent noting the Southern General Hospital. The low volume of patients and high number of units support the view of the Expert Advisory Group and the Advanced Interventions Service that it is unlikely that whilst some clinicians provide specialist services for OCD, there are no formally recognised tertiary OCD units in Scotland providing tertiary OCD services.
Scottish residents with OCD who currently require access to quaternary level psychopharmalogical and psychiatric services have access to NHS England services through a NHS Scotland risk‐sharing agreement. However, it has become apparent that there is the expertise to provide this level of service in NHS Scotland.
The level of psychological assessments and therapies currently provided at a quaternary level in Scotland needs to be explored further by services across Scotland. If capacity is available in NHS Scotland, there could potentially be a more enhanced role in providing quaternary specialised psychopharmacological, psychiatric and other treatments for OCD that are currently being provided in the English Springfield Unit. This would help to develop capacity of quaternary services in Scotland, reducing travel distances for patients, in addition to yielding significant savings to NHS Scotland.
In 2000, the Royal College of Psychiatrists Neurosurgery for Mental Disorder report noted that “it would be unwise to allow neurosurgery for mental disorder to die out.” Eleven years later, this review has found that the Advanced Interventions Service has provided a valuable service for people with highly chronic and severe treatment‐refractory depression and obsessive compulsive disorder from across Scotland and the rest of the UK.
National designation has both helped to sustain this highly specialised service, and to nurture the service’s ongoing surgical and non‐surgical development, bringing clear benefits to a number of people with chronic and severe mental health conditions. The Expert Advisory Group noted that the service clearly continues to meet the National Services Advisory Group criteria, and recommended that the Advanced Interventions Service continues to be nationally designated, in providing both anterior cingulotomy and vagus nerve stimulation. It was also recommended that the national service should receive more formal recognition for its existing non‐surgical assessment and advice service, which are necessary to complement and support the surgical service provided.
Person‐centred service: “Mutually beneficial partnerships between patients, their families and those delivering healthcare services which respect individual needs and values and which demonstrate compassion, continuity, clear communication and shared decision‐making."
It is recommended that the Advanced Interventions Service’s current assessment process continues in its positive focus on the service user. This will allow for the continued development of mutually beneficial partnerships and shared decision‐making between service users and the service.
It is recommended that the service continue to capture feedback from service users, and to actively use this feedback to improve the ongoing quality of the service.
In acknowledging that the Advanced Interventions Service is available to patients from across the UK, continued dialogue should be facilitated by the Advanced Interventions Service and National Services Division with other services and Commissioners in NHS England and Wales. This will need to be undertaken in a planned and stepped manner to ensure that future demand does not outstrip capacity and that if necessary, the Advanced Interventions Service can develop capacity to meet future levels of demand.
Safe service: “There will be no avoidable injury or harm to people from healthcare they receive, and an appropriate, clean and safe environment will be provided for the delivery of healthcare services at all times.
Effective service: “The most appropriate treatments, interventions, support and services will be provided at the right time to everyone who will benefit, and wasteful or harmful variation will be eradicated."
The national service needs to proactively communicate and engage with the clinical community in Scotland to ensure that it is appropriately meeting the true Scottish need for the service. It has been suggested that distributing the service’s referral criteria on an annual basis to the wider psychiatric community would support an increase in the referral rate into the service.
The service has indicated the desire to more proactively communicate with the UK Psychiatric Community by placing low‐cost advertisements in the British Journal of Psychiatry and assessing its impact. It is believed that this approach will support an increase in awareness of the service, and an associated increase in referrals to the service. The service should ensure that they are proactively identifying low‐referring services, and developing links with these services. This will support both the referral rate and the conversion rate to surgery.
There is a need to continue to ensure close liaison between the national service and the team retaining responsibility for the ongoing care of the patient to ensure that approved treatment recommendations are followed. This will support the ongoing efficacy of treatments provided by the service.
Formal links should be nurtured to support the further benchmarking between the Advanced Interventions Service, the English OCD networks; and the two other services providing neurosurgery for mental disorder: the University Hospital of Wales, and Frenchay Hospital, Bristol. Where possible, National Services Division should work in partnership with the service to support this work. The Advanced Interventions Service should continue to report robustly, develop the evidence‐base and use the literature to benchmark internationally.
Recognising that the vast majority of the activity within the service focuses on undertaking comprehensive assessments and developing detailed treatment recommendations for patients and referring clinical teams, it is important to ensure that this activity and the fuller patient pathway within the service is recognised within future service reports, and that this element of the service is clearly added to the future service definition. This should encompass assessment, home visits, the development of treatment recommendations, the delivery of the educational programme, and advice provided to other clinical teams.
If in the future, when the evidence‐base is developed, it becomes apparent that deep brain stimulation is a safe and effective procedure for the conditions covered by the national service, then the service could consider applying in a separate bid for an extension to their existing national designation.
It is hoped that the suite of recommendations included within this report will support the national service’s sustainability and promote the development of the service, by increasing referral levels into the service. It is hoped that improved communication and engagement with referrers will bring about an increase in referrals from across Scotland and the UK, resulting in an increased level of surgical and non‐surgical activity within the service. As the service’s degree of success in promoting future referrals and developing activity levels remains unknown, it is recommended that activity levels are continuously reviewed by National Services Division; and that commissioning assumptions and the associated service budget are updated as appropriate once trends in future activity levels are available.
The Specialised Services National Definition Set for England and Wales recognises that people with complex and refractory mood affective disorders (ICD‐10 codes: F30.‐ to F39.‐) and anxiety disorders (ICD‐10 codes: F40.‐ to F43.‐) require specialised in‐patient and outpatient services. Such patients pose major therapeutic challenges and centres of expertise concentrate skills and experience to treat the relatively low number of patients. It is recommended that in order to appropriately recognise and develop tertiary OCD services, a mapping of service‐need and existing provision for people with OCD be undertaken by NHS Scotland or the Scottish Government. This will support the further development of a safe and effective referral pathway for Scottish residents.
If it is thought that there is the expertise to provide quaternary specialised psychopharmacological, psychiatric and other treatments for OCD in Scotland, then NHS Scotland service providers should consider making an application to provide this level of service to the National Services Advisory Group.
Vagus Nerve Stimulation
Forty-one referrals were received during the reporting period (16 men and 26 women); with a mean age of 48.5 years. This is a similar demographic to previous years. There were 37 referrals (87.8%) from Scotland, 4 referrals (9.8%) from England, and 1 referral (2.4%) from Northern Ireland.
Twenty-seven assessments were conducted during the 2010/11 financial year. Seventeen men and 10 women were seen, with a mean age of 47.9 years (range 26.1 – 69.1 years). Five assessments were conducted outwith the SLA.
Approximately 50% of patients had a diagnosis of unipolar major depression, and approximately 30% of patients had a primary diagnosis of obsessive-compulsive disorder; up from 20% last year.
Six Anterior Cingulotomy procedures and one VNS implantation were performed during 2010/11. Four patients came from England.
There were no deaths and no post-operative infections during the reporting year. One individual had a small post-operative haemorrhage which had no clinically-detectable effects and was only seen on MRI scan. One patient experienced non-stimulation-related voice alteration following implantation of a VNS stimulator – this is expected to resolve.
The average (±SD) waiting time (from referral to assessment) for Scottish patients was 8.6 ± 3.7 weeks. This is similar to the previous year. Where patients had to wait longer than 15 weeks, this could be accounted for by reasons such as delays in receiving formal confirmation of funding (for English patients) and delays in the service being sent clinical case notes which are necessary for assessment.
There were no formal complaints.
Patient satisfaction for outpatient assessment and inpatient admission continues to be high, with the overwhelming majority reporting positive experiences of the service.
Of the 2 patients who had undergone Anterior Cingulotomy for depression and were followed up in 2010/11, one met criteria for response, although none met criteria for remission (categories not mutually exclusive). The majority of patients undergoing ablative neurosurgery experienced reductions in symptoms ranging from 19% to 50%. One patient underwent cingulotomy for OCD and experienced full clinical remission one year after surgery.
Of the 6 patients who were reviewed following VNS, three met criteria for response. One met criteria for remission.
Members of the team continue to deliver presentations at a regional, national, and international level. Staff continue to publish in peer-reviewed journals on fields such as: neurosurgery; ablative neurosurgery; vagus nerve stimulation; neuroimaging; and neuropsychology.
The service is research active, with a range of active research projects, some of which are part of international, multi-centre clinical trials of neuromodulation for depression.
The service is participating in an international, multicentre, clinical trial of Deep Brain Stimulation (DBS) for refractory depression, and has currently enrolled the first participant. This will enable us to not only advance treatments in this refractory population but also to develop patient choice in this clinical area. Uniquely, in Dundee, we will have the opportunity to evaluate the outcomes for DBS alongside those for other neurosurgical therapies.
Neurosurgical activity in 2010/11 continues to be variable but it is recognised that clinical activity varies from one year to the next and is dependent upon the nature of the patients referred. We believe that there are considerable numbers of patients with unmet needs and we are keen to ensure that they have the opportunity to be referred to the service.