National Waiting Times Health Board

Golden Jubilee National Hospital

SCOTTISH ADULT CONGENITAL CARDIAC SERVICE (SACCS)

ANNUAL REPORT 2015/2016

Contents Section A: Service/Programme .................................................................................................................................. 3

A2 Aim / Purpose / Mission Statement / Date of Designation ................................................... 3 A3 Description of Patient Pathway ............................................................................................ 3 A3 a) Target Group for Service or Programme ......................................................................... 3 A3 b) Abbreviated Care Pathway for Service or Programme .................................................... 4

Section B: Quality Domains ........................................................................................................................................ 7 B1 Efficient ................................................................................................................................ 7 B1 a) Report of Actual v Planned activity .................................................................................. 7 B1 b) Resource use ................................................................................................................ 14

B1 c) Finance and Workforce ..................................................................................................................................... 19 B1 d) Key Performance Indicators (KPIs) and HEAT targets .................................................. 22

B2 Effective ................................................................................................................................................................ 23 B2 a) Clinical Audit Programme .............................................................................................. 23 B2 b) Clinical Outcomes/ complication rates / external benchmarking .................................... 23 B2 c) Service Improvement ..................................................................................................... 26 B2 d) Research ....................................................................................................................... 31 B3 Safe .................................................................................................................................. 33 B3 a) Risk Register ................................................................................................................. 33 B3 b) Clinical Governance ...................................................................................................... 38 B3 c) Healthcare Associated Infection (HAI) and Prevention and Control of Infection ............... 38 B 3 d) Adverse Events ............................................................................................................ 39 B 3 e) Complaints / Compliments ........................................................................................... 40 B4 Timely (Access) ................................................................................................................. 40 B4 a) Waiting / Response Times ............................................................................................ 40 B4 b) Review of Clinical Pathway ........................................................................................... 44 B5 Person Centred ................................................................................................................. 47 B5 a) Patient Carer / Public Involvement Patient engagement ............................................... 47 B5 b) User Surveys ................................................................................................................. 50 B6 Equitable ........................................................................................................................... 50 B6 a) Fair for all: Equality & Diversity ...................................................................................... 50 B6 b) Geographical access ..................................................................................................... 50

Section C: Looking Ahead/Expected Change/Developments ................................................................................ 51 Section D: Summary of Highlights (Celebration and Risk) .................................................................................... 51

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Section A: Service/Programme

A2 Aim / Purpose / Mission Statement / Date of Designation

The Scottish Adult Congenital Cardiac Service aims to provide the highest quality specialist care to adults with congenital heart disease in Scotland irrespective of geographical location. The approach combines a comprehensive, multidisciplinary assessment with specialist congenital cardiothoracic surgical and catheter interventional expertise. The adult team works closely with the paediatric cardiac unit at the Royal Hospital for Children.

Nationally designated and formed in 2007, the Service is based at the Golden Jubilee National Hospital in Clydebank, and is managed by the National Waiting Times Centre Board which is part of NHS Scotland.

SACCS is co-located with two other key cardiovascular National Services, the Scottish Pulmonary Vascular Unit and the Scottish National Advanced Heart Failure Service, with whom there is close collaboration. The Golden Jubilee National Hospital also forms the base for the West of Scotland Regional Heart and Lung Centre allowing interaction with other major disciplines including electrophysiology and percutaneous coronary intervention.

The Golden Jubilee Conference Hotel is attached to the hospital, managed by the same Health Board, and allows excellent accommodation for relatives of patients undergoing treatment and for those patients not requiring inpatient facilities during their stay.

A3 Description of Patient Pathway

A3 a) Target Group for Service or Programme

Congenital heart disease remains the commonest birth anomaly with, on average, 1 in 145 live births affected. A wide variation in complexity is seen and, fortunately, changes in many cases are minor and do not require treatment. For those patients requiring intervention, modern paediatric cardiology practice has had a major impact on outlook, with survival to adulthood increasing from less than 20% to over 85%. Adults with congenital heart disease therefore represent a new and rapidly growing population directly reflecting the major improvement in paediatric care. This is also reflected in the youth of the population with the commonest age group between 21 and 25 years. Most are working full time and many are supporting young families.

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The exact prevalence of adult congenital heart disease in Scotland is unknown. Simple estimates based on the birth incidence from the Glasgow Register combined with expected survival, suggest that in excess of 15,000 adults with congenital heart disease are estimated to be living in Scotland. Of this group, over 3000 are estimated to need regular contact with the Service with a further 7000-8000 patients requiring single or intermittent review, either directly from the transition clinic at the Royal Hospital for Children or through referral from regional and local clinics. Recent data from ISD suggests that these numbers may under-estimate the true health burden. Currently SACCS is aware of less than 5000 patients. The lower than expected number of patients is a common finding in many countries. Although multi-factorial, a significant

proportion of the difference will be patients who are known to have congenital heart disease but who have been lost to follow up.

A3 b) Abbreviated Care Pathway for Service or Programme

Patients currently reach the service via several routes. A proportion of adults are seen in the transition clinic at the Royal Hospital for Children as their care is handed on from the paediatric team. However, the majority of adults are referred to the service from local or regional cardiology services. Many of these services are led by cardiologists with an interest in ACHD and the development of the clinical ACHD network has allowed much closer links to be established facilitating high quality shared care between the units. A third group are those patients with known congenital heart disease who have been lost to follow-up and have re-presented for cardiac or other reasons. Additionally, a substantial group of patients with congenital heart disease are only diagnosed in adulthood. Although diagnoses in these adults favour the less complex end of the spectrum, patients are often symptomatic and intervention is frequently indicated. The ultimate aim is for all patients with ACHD in Scotland to be known to SACCS irrespective of the need for specialist review in the specialist centre.

Many patients with congenital heart disease require ongoing specialist input to monitor the consequences of the underlying anatomy and residual lesions following earlier intervention. This approach differs from that in many areas of cardiology, in which long term follow-up is usually not required. The major goal of ACHD care is to maintain cardiac function, thereby maximising the quality and longevity of life. Repeated highly specialist interventions, including surgery, may be required to achieve this aim. A complicating factor in many situations is the lack of evidence clarifying the timing of intervention.

SACCS offers shared care with local units with the aim of providing specialist input when required and allowing the patient to have a well informed local service to provide more immediate support. A key component is specialist support of local services with attendance to local ACHD clinics by SACCS clinicians. For selected patients who require a more comprehensive multi-disciplinary review, planned or otherwise, assessment is completed over 2-3 days and then a clinical review and care plan. If the result of the assessment is to offer intervention, this is taken forward. Local care is then continued in between the assessment and treatment visits.

The core activity of SACCS is the multidisciplinary assessment of patients. Specialist investigations such as cardiac MRI and CT, cardiopulmonary exercise testing and cardiac catheterisation are combined with detailed clinical assessment and multidisciplinary review to define the care plan and to decide whether intervention is indicated. In many patients, serial assessment is necessary, the interval varying from 1 to 5 years to determine change so that the optimum timing for intervention can be determined.

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Well developed local services for patients with congenital heart disease have been in existence for many years in the North and East of Scotland and SACCS support for all but one area has been established. A

major development in recent years has been the establishment of a network of local ACHD clinics for the West of Scotland. Previously SACCS took responsibility for providing local care for this region. The development has allowed the responsibility for the provision of local care of ACHD patients to be passed to the local team. In the 2015-16 the local clinic for Greater Glasgow and Clyde has moved into Glasgow, and clinics have been established in Forth Valley and Ayrshire to care for their patients with plans in place to establish clinics in Lanarkshire, hopefully over the course of 2016. The remaining regional patient clinic from Lanarkshire and Dumfries and Galloway is still located at the Golden Jubilee National Hospital, until the service moves to locations within the West of Scotland to facilitate the delivery of care closer to the patient’s home.

A diagrammatic representation of the current outpatient pathway can be seen on the following page.

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6

Scottish Adult Congenital Cardiac Service Outpatient Pathway

SACCS active list

Discharge Patient?Discharge Patient?

NO YES

Approved Transition Clinic Referral 

Approved Transition Clinic Referral 

Combined Cardiac Obstetric clinic 

Referral

Combined Cardiac Obstetric clinic 

Referral

CORE ASSESSMENT1.Clinical Review2.ECG3.Echo4.Bloods5.CXR6.MRI/CT7.CPET8.Holter Monitor9.ABPM

VETTING

NO

Booking OfficeReferral accepted?Referral accepted?

YES

Discuss at MDT?

Discuss at MDT?

NO

YES

Written Care Plan

SHARED CAREDetermine interval for review 1‐5 

years

Discharge back to local referrer (Local Care)

Discharge back to local referrer (Local Care)

MDT Quorum:2 Cardiologists2 Surgeons

Back to referrer with advice

Back to referrer with advice

Further Investigation

Medical Therapy & Intensive 

Review (OOCE)

Catheter Intervention Surgery

Pulmonary VasodilatorTherapy

Refer for Device Opinion

Refer for EPS/RFA Opinion

Refer to other Centre E.g. TCPC

Refer to SPVURefer for Cardiac 

Transplant

Referral from CardiologistReferral from Cardiologist

Re‐Referral from GP

Re‐Referral from GP

Referral from Physician

Local reviewLocal review

Referral from Physician

Section B: Quality Domains

B1 Efficient

B1 a) Report of Actual v Planned activity

SLA activity Actual activity 2015-16

Surgical procedures 100 -120 107

Catheter interventions 80 - 90 90

MRI scans 400 -425 446

Outpatient clinics 90 191

(96 Assessment, 17 Post-Intervention Review,

48 Pulmonary Hypertension)

(20 Obstetric, 10 Transition)

Pulmonary hypertension patients

40-45 42

Figure 1

Surgical procedures

SACCS provides the only cardiothoracic centre offering congenital cardiac surgery in Scotland and almost all ACHD surgery is performed in the Golden Jubilee National Hospital. Small numbers of patients each year are referred outside Scotland to other surgical centres for highly specialised surgery including congenital cardiac transplantation (Newcastle), Fontan conversion (Southampton) and highly complex aortic or valve procedures (London).

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Surgical activity has recovered to lie within the Service Level agreement for the current year (Fig 4). A backlog persists of patients entering the patient pathway and clinical assessment process that better identifies ACHD patients likely to benefit from intervention. The activity remains amongst the highest in the UK undoubtedly reflecting a “catch up” phenomenon following the reduced activity prior to the formation of the National Service. Despite the development of the clinical network, a disproportionately large number of patients undergoing surgery remain from the West of Scotland Health Boards with a similar overall pattern to previous years. Although, previously thought to represent the differing levels of access to specialist ACHD

care between Health Boards across Scotland, the persisting West of Scotland bias may represent reduced access to local services. A major challenge is understanding why the geographical variation persists despite better shared care and to introduce interventions to improve equity of access to both local and national services.

Figure 2: Surgical activity by health board 2015-2016

Figure 3: Surgical case mix 2015-16

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05

1015202530

Procedures by Type

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There has been a significant change in the case mix through the catheter lab in the last years. The majority of interventional cases and of the complex diagnostic cases are now performed under general anaesthetic. A Cardiac Anaesthetist provides the anaesthetic cover. To facilitate the peri-procedural care, the Anaesthetic team formally trained several of the catheter lab nurses to provide a safe recovery environment for these patients and these skills have been achieved by our CCU nurses to care for patients post complex intervention.

General anaesthetic provision

The invasive service is delivered by Dr. Niki Walker working with Dr Ben Smith from the Royal Hospital for Children’s team. As previously described, although a drop in the number of cases performed annually was noted in 2010, this was as a consequence of the almost complete disappearance of PFO closure, the complexity of cases has increased markedly since that time and complex diagnostic procedures now form the bulk of the workload. There is acceptance of the need for detailed haemodynamic assessment in patients with congenital heart disease maintaining the demand on catheter laboratory time. Hybrid approaches combining invasive haemodynamic assessment with cardiac MRI further assist in the understanding of the physiological consequences of congenital heart disease.

Catheter intervention

Figure 4: Surgical activity 2008-16 set against SLA

0

20

40

60

80

100

120

140

2009/10 2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

Tota

l

Financial Year

Surgical Yearly Financial Activity

SLA

Total

47%

22%

9%

22%

0

5

10

15

20

25

30

35

40

45

Numb

er of

Pati

ents

Procedure Category

SACCS - GJNHCath by Grouping TypeApril 2015 - March 2016

Complex Diagnostic

Complex Intervention

Other Cases

Shunt Device

Figure 5: Catheter lab case mix 2015-16. Shunt device includes ASD closure, PFO closure and PDA closure.

Figure 6: Catheter lab activity 2015-16 by health board

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Figure 7: Catheter lab activity 2008-2016 set against SLA

Magnetic resonance imaging

Cardiac MRI remains the cornerstone of imaging in the ACHD patients. This test has revolutionised our understanding of congenital heart disease and acts as a primary diagnostic tool for our patients, a surveillance screening method for interval change and a decision making modality for interventions. The cardiac MRI scan service at the Golden Jubilee has had a challenging year following the resignation of Dr Hamish Walker.

Until December 2015 we benefitted from the reporting skills of Dr Eva Nyktari through a service level agreement with the Royal Brompton Hospital in London. From January 2016 we have had a hybrid reporting programme supported by Dr Ruth Allen from the Children’s Hospital, Dr Brian Grant at Belfast Children’s Hospital and Dr Hamish Walker.

The ongoing success of this service is thanks to the skill and dedication of our radiographers , who have ‘upskilled’ to manage an essentially ‘remote’ practice.

Despite the challenges, we have maintained our SLA MRI scan provision. We have reviewed and rationalised our scan utilisation.

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020406080

100120140160180

2009/10 2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

Tota

l

Financial Year

Cath Financial Yearly Activity Total

SLA

Figure 8: MRI activity 2015-16 by health board

We continue to offer general anaesthetic for MRI scans for patients intolerant of MRI and also scanning for patients for MRI conditional pacemakers.

Figure 9: MRI activity 2008-16 set against SLA (part year activity for 2008-2009)

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0100200300400500600700

2009/10 2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

Tota

l

Financial Year

MRI Financial Yearly Activity Total

SLA

Multidisciplinary Assessment

The comprehensive clinical assessment of patients incorporating high quality complex imaging with echo, cardiac MRI and cardiac CT and detailed physiological testing with cardiopulmonary exercise testing and 6 minute walk tests, along with specialist clinical and multidisciplinary review, remains a major clinical activity of the service.

Potential interventional outcomes from review include surgery, including cardiac transplantation, cardiac catheterisation and intervention, device therapy or electrophysiological ablation. Medical outcomes include the specialist management of arrhythmias, heart failure and pulmonary vasodilator therapy. Assessment may also be reassuring suggesting no need for intervention or treatment.

Figure 10: Assessment activity 2015-2016 by Health Board

For many patients referred to SACCS for the first time, the assessment process may well be their first introduction to the specialist service. The facility of the Golden Jubilee Conference Hotel allows for high quality accommodation away from a ward environment during the assessment process. This arrangement is cost effective and more appropriate to many patients needs. In addition, carers and relatives are able to stay with the patient, which is particularly important for individuals with special needs. Admission to the National Services Division Ward is arranged for patients requiring greater medical supervision.

Although clinical assessment may be reassuring and allow discharge from specialist services, for the majority of patients the process will need to be repeated as part of the ongoing serial assessment and specialist follow

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up. The time interval for subsequent reassessment is determined from the review with shared care continuing in the intervening period through the local services, unless there is a change in the clinical condition or assessment findings.

B1 b) Resource use

Bed utilisation

Total bed days in 2015-2016

Mean length of stay (days)

Median length of stay (days)

Range of length of stay (days)

Surgical

(107 cases):

ICU 273 2.6 1 0-62

HDU 104 2.4 2 0-30

Ward 105 7.4 6 0-46

Total 1309 13 9 1-63

Catheter Lab

(90 cases):

CDU 78 1 1 0-2

NSD 32 0.4 0 0-27

CICU/HDU 13 0 0 0-2

Total 185 2 2 1-28

Figure 11

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A change in practice concerning the management of patients undergoing catheter procedures has increased related bed utilisation since 2010. The increasing complexity of the catheterisation case mix also contributes. Patients with cyanotic heart disease are admitted the day before procedure for intravenous fluids to avoid

dehydration whilst fasting. Catheter lab cases remain in hospital if a device has been implanted or if they have cyanotic heart disease. This is in line with accepted practice elsewhere in the UK. The morning after intervention, investigations are performed to confirm an optimal outcome or manage complications aggressively.

Inpatient bed utilisation associated with elective patient assessment remains low reflecting the accessibility of the Golden Jubilee Conference Hotel. However, increased numbers of patients requiring emergency/urgent admission for medical management e.g. management of arrhythmias or heart failure not linked to surgical or interventional procedures increase bed utilisation and are likely to continue to grow as the service develops. In particular, there is greater recognition of the need to transfer some patients to the specialist centre for ongoing management.

The development of the local ACHD services for the West of Scotland has allowed SACCS to focus on the delivery of highly specialist care. Although the service continues to provide an all day clinic on a Thursday, a reduction in the number of patients seen reflects the more specialist clinical review. DNA rates remain lower than before and reduced further as the role of the clinic changed. The west of Scotland bias remains despite the development of the local services.

Clinics

Total number of clinics

Number of new patients booked

Number of return patients booked

Total number of patients

seen

DNA rate

Average number of patients attending per clinic

Proportion of patients from West of Scotland

SACCS 96 112 756 835 4% 9 65%

Teenage 10 0 76 60 27% 5 94%

Obstetric 20 105 73 156 12% 13 93%

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Figure 12

Figure 13

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Pulmonary hypertension advanced therapies

Pulmonary vasodilator therapy has transformed the treatment of acquired and idiopathic pulmonary hypertension. This group of patients previously faced a very poor outlook, and therapy has markedly improved survival and functional status in many. Whilst the majority of patients with pulmonary hypertension fall under the remit of the Scottish Pulmonary Vascular Unit, a small group of patients in whom their pulmonary vascular disease results from congenital heart disease can be treated under the care of SACCS.

Many patients in this group have pulmonary hypertension as a result of failure to recognise and treat congenital heart disease in early life. In the current era of ante-natal screening and good paediatric care, it can be expected that the number of new patients requiring treatment will fall to a lower level in the longer term. There will still be patients who require treatment either as a result of uncorrectable or residual lesions. Also patients arriving from countries with less well developed healthcare systems and those in whom for whatever reason have had their diagnosis missed will undoubtedly continue to present

In keeping with published guidelines, we consider offering therapy in patients who are symptomatic from Group 1 pulmonary arterial hypertension as a consequence of congenital heart disease with functional class III or IV. We also offer treatment to pregnant women with pulmonary hypertension from any cause in conjunction with the Scottish Pulmonary Vascular Unit as a part of their ante-natal care due to the high mortality risk that these women experience.

We follow a programme of multidisciplinary assessment prior to initiating therapy, and then close monitoring during therapy. Formal assessment of effectiveness of therapy is performed at 6 months and the drug is ultimately withdrawn if there has been no benefit.

The current total number of patients on treatment is 42. The table below illustrates the number of patients established onto therapy per financial year

In the last year we have developed a nurse-led clinic to monitor our patients who are on therapy. This has facilitated the review process for individuals, with an algorithm followed for assessment. The advanced nurse practioner works closely with the consultant and agrees a management plan that may include maintenance review, uptitration or down-titration of therapy.

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Drug therapy Number of patients

Bosentan only

16

Sildenafil only

18

Ambrisentan only

2

Combination therapy: Sildenafil and bosentan

5

Combination therapy: Sildenafil and ambrisentan

1

Combination therapy: Tadalafil and Bosentan

0

Figure 14

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B1 c) Finance and Workforce

Golden Jubillee National Hospital

SACC's - NSD

2015/16 Finance report

2015/16 Profile 2015/16 Profile Forecast March '16

Actual March '16

w.t.e. £ w.t.e £

Staff Costs

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Consultant Cardiologist 4.00 518,822 2.00 282,200

Consultant Cardiac Surgeon 0.30 41,956 0.30 41,956

Consultant Anaesthetist 0.20 25,958 0.20 25,958

Cardiac Physiologist 0.20 11,183 0.20 10,803

SACCS Fellow 2.00 101,101 3.00 129,623

Radiologist (upgrade B7-8a) 1.00 15,195

Radiologist (Band 6) 0.40 16,698

Medical 6.70 699,021 7.10 522,433

Liaison Manager Band7 1.00 44,624 1.00 52,755

Clinical Nurse Specialist Band7 1.00 44,262 1.60 51,714

Transition Nurse Band7 1.00 44,262 1.00 43,568

Ward Nursing 2.00 55,680 223,724

CICU Nursing 4.00 113,333 113,333

Nursing 9.00 302,160 3.60 485,094

Data Manager 1.00 26,604 1.00 23,443

Secretary (Band4) 2.00 51,834 1.00 25,488

Admin (Band3) 1.00 21,545 2.50 63,846

Agency Admin Support (temp) 2,206

Admin / Clerical 4.00 99,983 4.50 114,983

TOTAL STAFF COSTS 19.70 1,101,164 15.20 1,122,511

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Ward 33,948 37,465

Theatre 87,057 87,057

MRI Sessions 51,005 51,005

GA Sessions 153,457 153,457

Pharmacy Supplies 325,467 328,984

Ward Supplies 13,782 13,782

Sub Total 13,782 13,782

Devices 364,815 147,825

Named Drug Costs 459,045 577,429

Sub Total 823,860 725,255

Biochemistry 978 978

Bacteriology 723 723

Haematology 1,409 1,409

Other 2,304 2,304

Labs 5,414 5,414

Catering 1,948 1,948

Portering 254 254

Linen 775 775

Cleaning 433 433

Other Costs 12,199 12,199

General Services 15,609 15,609

Maintenance 8,424 8,424

Capital Charges 4,170 4,170

Overheads 12,594 12,594

TOTAL COSTS 19.70 2,297,891 15.20 2,224,149

Notes

1. CP support currently 0.4wte with aim to recruit in March 16 to take total to 1.2wte B7 going forward.

2. SACCS fellows posts 2wte vacant Apr-July. 3wte fellow from August to March utilising slippage

3. Temp upgrade of B7 radiographer to B8a to support service and additional 0.4wte B6 radiographer

4. 1wte clinical nurse specialist on maternity leave Apr-July cover with 0.6wte B6. B7 returned from mat leave Aug 15 at reduced hours as 0.6wte.

5. Additional 0.5wte admin support from June 15.

6. Additional £1,500 for echo probe in 15/16

7. Additional £4,170 for capital charges relating to echo probe 15/16

8. Melody Valves were not purchased in 2015-16 as a planned purchase had taken place so costs dropped however further valves will be required for 2016 onwards

Workforce

Head of Operations Ms Lynne Ayton

Clinical Specialties Manager Ms Jennifer Hunter

Consultant Cardiologist Dr Niki Walker

Consultant Surgeons Mr Kenneth MacArthur, Mr Mark Danton, Mr Andrew McLean, Mr Ed Peng

Clinical Nurse Manager Mrs Jane Rodman

Nurse Specialists Mr James Mearns, Mrs Sandra Jansz, Mrs Elaine Muirhead, Mrs Maggie Simpson

Administrator Mrs Anne Miller

MDT co-ordinator Mrs Joyce Fraser-Smith

Data Manager Mr Kevin Mckie

Medical Secretaries Ms Eleanor O’Neil, Mrs Mairi MacDonald

Management Accountant Mrs Fiona Mullen

The management structure was reviewed in 2015 and in March 2015 was changed to separate the nursing and operation role, reflecting the needs of the NSD services.

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B1 d) Key Performance Indicators (KPIs) and HEAT targets

HEAT targets have recently been replaced nationally by Local Delivery Plan Standards. SACCS sits within National and Regional and National Medicine Division, which reports to the board through the corporate ‘scorecard’ and presented at the Performance & Planning Committee and onwards to the Board. This monitors and reports on operational, financial, clinical and staff governance including for example absence rates, waiting times and response times to complaints or concerns.

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B2 Effective

B2 a) Clinical Audit Programme

SACCS participates in local organisational audit when relevant. The service submits data to the UK NICOR database of cardiac surgery and intervention together with the National Pulmonary Hypertension database. This includes an external validation visit that ensures data quality.

Review of surgical and catheter interventional mortality and complications occurs within the existing structure of surgical and cardiology morbidity and mortality meetings. Deaths unrelated to procedures are discussed within the multidisciplinary forum. When appropriate, formal meetings are called with as wide a clinical audience as possible to review specific concerns regarding the death of a patient.

B2 b) Clinical Outcomes/ complication rates / external benchmarking

Mortality

In the year 2015-16, there were 2 deaths in the SACCS population at GJNH. One was an elective surgical procedure and the other death was late after an emergency surgery.

The detailed mortality data for the programme are in the public domain as published by NICOR Congenital. The outcomes data for the programme is reported both on the NICOR congenital Website.

https://nicor4.nicor.org.uk/CHD/an_paeds.nsf/vwContent/home?Opendocument

The programme has never in the past diverged beyond the strict limits imposed on congenital procedural 30 day mortality which is essentially compared to the UK&I average by procedure. This excellent survival performance has been maintained in the current database cycle.

Overall UK outcomes are as good as anywhere in the world and this must be regarded as a very high standard for operative survival which SACCS meets. It is widely accepted that although this is a good primary marker of outcomes the speciality as a whole has much work to do in addressing surgical morbidity and risk adjusted mortality.

Within the website one can view as an example of the mortality reporting the data for our highest volume procedure, pulmonary valve replacement, which is usually a redo procedure. It shows that we are a high volume centre with mortality in the expected range for the procedure.

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Morbidity

Complication Number of affected patients

Atrial Fibrillation 5

Cardioverted 1

Deep sternal wound infection treatment: surgical debridement 2

Inotropes 9

Intra-aortic Balloon Pump Used: Intra-operation 1

Low Cardiac Output 1

Nasogastric Feeding 2

New Haemofiltration or Dialysis Post-Operatively: Acute renal failure treated with haemodialysis 1

Other support device used: Intra-operation 1

Open Tracheostomy 1

Pacing Dependence Delaying Discharge 1

Permanent Pacemaker 5

Postoperative Elevated Creatinine 2

Pulmonary Infection Requiring Antibiotics 1

Reason for Intra-aortic Balloon Pump Use: Haemodynamic instability 1

Required CPAP 3

Return to Theatre: Re-operation for bleeding or tamponade 2

Return to Theatre: Re-operation for other cardiac problems 1

Reventilated 1

Septicaemia 1

Sternal Wound Leak 1

Figure 16 Surgical related morbidity

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Complication Number of affected patients

Device embolisation 3

Stridor in recovery - required IV steroids and nebulised adrenalin. 1

Haemoptysis 1

Figure 17 Morbidity associated with catheter procedures

For many areas of intervention in ACHD, little evidence exists with respect to the timing of intervention and the associated benefit. In an asymptomatic young patient, for example, it then becomes extremely difficult to judge the balance of benefit versus risk. In the absence of evidence, all clinicians involved in the treatment of patients with ACHD have a duty to assess in much greater detail the benefit associated with intervention. For many patients undergoing surgery and catheter intervention, the post intervention assessment is as comprehensive as the pre-procedure.

The key to decision making in our high risk group is the formal multidisciplinary meeting at which Consultants and Specialist Nurses from Cardiology, Cardiac Surgery, Anaesthesia and Intensive Care gain consensus, for each procedure. All deaths in the SACCS programme, which are usually in young adults and therefore highly sensitive are reviewed formally in multiple Mortality forums within GJNH.

The mortality data for the adult programme is reported by the NICOR Congenital database together with the results for the rest of the UK and Ireland. While there is clear universal reporting for Congenital Procedural outcomes in children with all Children’s Congenital Units reporting, the position with Adult Congenital Outcomes remains less clear. Many English adult cardiac surgical units do very low volumes of ACHD surgery and intervention and many do not report these results to NICOR congenital but only to the Adult Acquired Cardiac Audits. The problem is even more widespread for congenital intervention which is unfortunately reflected in Scottish practice arrangements. We currently report our Surgical Procedures to both audits, acquired and congenital, and may be alone in this practice.

It is of key significance that no risk stratification exists for the complex group of high risk procedures which constitute Adult Congenital Procedural Activity and that we can only compare our mortality to that of the national average by procedure group. This is a worldwide problem not confined to the UK and is an intrinsic function of the low volume, high risk, high diversity practice which ACHD interventions constitute. The majority of our operative procedures are redo cardiac surgery carried out at high risk in young patients and this risk is not reflected in the acquired adult database risk stratification models.

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Our overall volumes for ACHD surgery were the 5th highest in the UK in 2014-15 and we have reasonable volumes for catheter intervention which are obviously diluted by the failure to focus all congenital cardiac catheter activity in the National SACCS centre. The interventional catheter activity performed elsewhere in Scotland for congenital disease is not reported to the Congenital Audit at NICOR. Despite our disproportionately low volume of interventions we are still larger than many reporting centres. Note that these volumes are for interventional catheter only and we still have a high volume of diagnostic catheterisation.

It is also critically important to consider individual operator volumes. We currently have 4 surgeons however the 4th is a proleptic appointment in recognition of the imminent retiral of one of the team.

We are therefore a high volume Adult Congenital cardiac programme by UK standards and there are few higher volume programmes internationally. We have no survival outcome divergence.

B2 c) Service Improvement

Clinical Strategy and the Scottish Congenital Cardiac Services group

The financial year 2012-2013 saw the completion of the Clinical Strategy with submission to the Scottish Government in the summer of that year. At the beginning of 2013, the Scottish Government commissioned the Scottish Congenital Cardiac Network (SCCN) to facilitate the delivery of high quality and integrated specialist congenital cardiac care from cradle to grave. The different needs of the adult and paediatric groups was recognised by adult and paediatric sub-groups, although substantial overlap is recognised, for example, the areas of transition, audit, and IT. The major aim of the network was to provide an infrastructure to facilitate the development of a clinical ACHD network and address issues of concern across the network such as the development of Scottish ACHD standards, educational needs of primary and emergency care, unified IT solutions, audit and education.

The Network adult and paediatric sub-groups were launched in November 2012 (paediatric) and March 2013 (adult) with the commencement of the network on 1st April 2013. Following consultation with stakeholders including patients the work of the network was quickly defined and commenced. Key initial areas for the adult subgroup are the continuing development of the clinical network, the drafting of Standards of ACHD Care in Scotland and the description of referral and care guidelines. The SCCN came to the end of its term in March 2015 and ongoing work to address the aims of the network will continue under the auspice of the Scottish Congenital Cardiac Services chaired by Mr MacArthur.

Support to Outreach Services.

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A key aspect of the model of care laid out in the SACCS Clinical Strategy is specialist support to local ACHD clinics. Although clinicians from SACCS had sporadic input to a few local services prior to the introduction of the Network, recognition of the need to provide commitment to local services combined with a dedicated resource from the National Service has allowed continued progress during the current year. The clinician

resource with which to support local services was decided by region on a general population basis and is detailed below. Travelling time was removed from the calculation so that the same clinical time per unit of population was available for each of the three regions.

North of Scotland – 4 full day clinics / annum

South East and Tayside– 8 full day clinic / annum

West of Scotland – 10 full day clinics / annum

Support to Aberdeen and Raigmore hospitals ACHD clinics commenced in 2012/13. During 2013/14, support of Outreach clinics in South East and Tayside was developed including services in the Perth Royal Infirmary, Edinburgh Royal Infirmary, Queen Margaret’s Hospital in Dunfermline and the Borders General Hospital in Melrose. Discussions continue with Dundee as the last unsupported ACHD clinic in that region.

The West of Scotland local services continue to develop. This has removed the responsibility for providing local ACHD care for patient living within the region from SACCS allowing the national service to focus upon the provision of specialist care. Greater Glasgow and Clyde repatriated their clinic in July 2015, Forth Valley in January 2016 and Ayrshire and Arran in April 2016. The remaining regional service is currently located at the Golden Jubilee National Hospital supporting the care of ACHD patients from Dumfries and Galloway and Lanarkshire until the clinics move to locations closer to the patient’s home. The structure of the West of Scotland ACHD service has been agreed through a Project Board.

Education

The fourth Scottish ACHD Conference was held on November 20th 2015 at the Golden Jubilee Conference Hotel and Conference Centre. Similar to the previous events, the meeting was well attended and received. This was an integrated multi-disciplinary meeting with presentations from physicians, imaging clinicians, and nurses. SACCS supports the wider education programme providing CME for non ACHD consultants and participating in educational events for cardiology trainees, nurses and other health care professionals. Consultant cardiologists with an interest in ACHD are additionally encouraged to attend any aspect of the service at the Jubilee to help with their ongoing professional development.

A basic minimum of attendance to 10 SACCS clinics and MDT meetings at the Jubilee has been suggested to provide initial training for consultants without prior experience in ACHD. The offer to support the West of Scotland health boards in training their medical workforce has been made and reiterated at meetings with medical and management teams in an attempt to support the Regional / local ACHD clinic establishment. Ongoing education and support is provided through the outreach clinics.

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Medical Workforce

Consultants

Consultant recruitment remains a challenge. In September 2013 our third consultant left. Activity was maintained through the use of weekend initiatives and has also been assisted by the development of the regional ACHD service. In April 2015, Dr Hamish Walker left the service.

A further recruitment process took place in February 2016 and we have offered positions to 2 consultants with anticipated start dates, first in the autumn of this year and then in early 2017 .

Clinical Fellows

Two clinical fellows joined the service in August 2015 and have extended their roles as the year has progressed. Both have reapplied for the fellowship positions and over the next 2 years they will integrate their clinical duties with research.

Nursing Service

Staffing

We have increased our advanced nurse practitioner contingent to 3.6 WTE. This has allowed the development of nurse led clinics and will allow the development of nurse support to the outreach clinics.

Nurse-led Clinics

The nursing team have developed a nurse-led clinical service including pre and post intervention clinic and pulmonary hypertension clinic. The introduction of these clinics has ensured timely and standardised review for patients. They offer continuity of care, which contributes to an improved patient pathway. Evidence suggests this will enhance the patient experience. The introduction of nurse led clinics has also facilitated appropriate use of nursing and consultant expertise.

As part of the plan to maintain capacity, the nurse-led pulmonary hypertension (PH) clinic has:

Reduced waiting times for new patient referrals

Ensured current patients are reviewed at six monthly intervals

Improved patient pathway

Appropriate introduction, titration and discontinuation of PH therapy

Developed links with established PH units

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The Advanced Nurse Practitioners are also involved in both the Obstetric and Transition services. They support patients and their families and provide patient education on lifestyle issues including contraception, exercise and disease prevention.

Audit

During 2015 we were fortunate to have access to a Clinical Psychologist who was linked to GJNH on a part-time secondment. Not only were they able to review some of our patients but also helped implement an audit to determine the psychological needs of patients attending SACCS. Data was collected by the SACCS nursing team using prevalidated tools to measure depression (PHQ-9) and anxiety (GAD-7). Results were as follows:

179 near consecutive attendees at the SACCS clinic (n= 179)

Depression present in 25% and anxiety present in 21%

30% of SACCS outpatients have clinically significant levels of anxiety and/or depression

Only 5% of SACCS patients accessing appropriate psychological care

The impact of psychological distress in ACHD on quality of life and health outcomes has been well documented. Our audit supports literature that highlights an increased prevalence of psychological distress for people with ACHD compared to the general population. Despite this SACCS has no dedicated psychology input although this remains a point of discussion in service planning.

Continuing Professional Development

Our nurses continue to develop links with ACHD nurses throughout the UK. This includes membership of the British Adult Congenital Cardiac Nursing Association and attendance at their meetings. One of our nurses recently attended the Freeman Hospital in Newcastle. The aim of this visit was to improve links with the team and enhance the patient pathway for those requiring assessment for cardiac transplantation.

The ANPs have presented at a number of local and national conferences educating and raising awareness of ACHD as well as attending international conferences themselves.

The nursing team were approached by Chest Heart Stroke Scotland and have developed a congenital module for their Heart-e learning programme. This is aimed primarily at healthcare professionals with an interest in or who may encounter patients with ACHD.

Nursing Summary and future plans

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The nurses proactively continue to review and plan their weekly commitments to support a changing clinical environment, and continue to strive to improve the service whilst meeting daily clinical demands. Although there is a challenge in supporting a national service led by a single consultant, this allows the nursing team to extend their role and develop further expertise in ACHD.

The team are working on improving the SACCS website. This will provide up-to-date information on service provision and advice on living with congenital heart disease. Further IT developments include the introduction of Patient Portal. It is hoped that this will empower patients and improve patient centred care.

The nurses are eager to support outreach clinics throughout the country and are in the process of formalising contracts to enable this development.

Services/Pathways for patients with learning disabilities

We have continued to develop the care pathway for patients attending the GJNH for out/inpatient assessment and surgery. The team attend quarterly meetings with Learning Disabilities Health Inequalities Network. We continue to work closely with organisations such as Down’s syndrome Scotland. Formal established links are in place with local learning disability teams. During 2015 a presentation on Learning Disabilities was included in the Nursing Assistant core training session. This presentation was delivered by the SACCS nursing team and aimed to raise awareness and improve care for this patient population.

Transition service

Currently the Transition service consists of a monthly morning clinic based at the Royal Hospital for Children. The transition clinic offers an assessment of their clinical condition, including ECG and Echocardiogram. The clinic also focuses on addressing the health education needs of the patients and their families due to the recognition that transition can be a period of great change and vulnerability for all of those involved. Certain conditions may impact on work and lifestyle issues and these need to be addressed at a time that is appropriate for the individual patient. Therefore there is an acceptance that transition is a process and not all patients will be ready to move to adult services after a single clinic visit. The decision to transfer care to adult services is a collaborative one that is made during the consultation and is with the agreement of the patient and their family.

Recognition of the need to provide transition over several years, starting as early as age 12 and addressing key issues triggered the introduction of a paediatric nurse led clinic. The model of transition demands a substantial and sustained input, of which only a small proportion in many patients needs to be medical. A nurse led service is ideal to address many of the issues and one of our Advanced Nurse practitioners, together with colleagues at Royal Hospital for Children Hospital have laid the foundation for a new service, describing the transition pathway and scoping the further development of a nurse led clinic. Although this patient pathway has been acknowledged, the full implementation requires further support and development.

Additionally, our Advanced Nurse Practitioners (ANP) work in collaboration with nursing colleagues from Royal Hospital for Children to host the annual Transition Open Day at the Golden Jubilee National Hospital. Patients and their families attend the event from all over Scotland. The event provides patient education in an informal environment. Patients and their families also have the opportunity to meet members of the adult team, peers and stakeholders from various charities and support groups.

Cardiac Obstetric Service

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The cardiac obstetric service continues to provide specialist care to pregnant women with heart disease. Based at the Queen Elizabeth University Hospital maternity unit, the combined clinic offers antenatal care including delivery planning, together with pre-pregnancy counselling and post-natal review. Cardiac assessment is facilitated by onsite echo facilities within the clinic staffed by an experienced echo technician from the Golden Jubilee together with utilisation of other inpatient and outpatient cardiology services at the QEUH. The cardiac obstetric multi-disciplinary team meeting broadens the expertise available to construct

detailed delivery plans, with a particular focus on the higher risk mothers. Obstetric and cardiac anaesthetic and cardiac intensivist expertise join the cardiac and obstetric input at the meeting. It is hoped that the MDT will also be seen as an educational opportunity for clinicians or trainees with an interest in the management of women with heart disease.

Location of delivery, dependent upon the associated risks, may be within the local unit in low risk patients; the QEUH in moderate risk deliveries or, in the case of the highest risk cases, at the Golden Jubilee with full cardiac support. Delivery at the Jubilee necessitates caesarean section, with separation of the mother and her new baby whilst the mother’s condition is stabilised. Babycam facilities allow visual contact during this difficult time but this separation underpins the importance of a multidisciplinary approach to decision making with respect to the location of delivery. Emergency deliveries of acutely ill pregnant women from cardiac problems are also undertaken at the Jubilee. In the year 2015-16, there were 7 deliveries performed at the Jubilee of which 3 had congenital heart disease.

The ANPs provide support and expertise for this group of patients at an extremely stressful time for them. The aim is to develop a care plan specific to each individual patient and provide the link between local care, clinic assessment at the Southern General Hospital, and in patient stay in GJNH.

This includes:

Facilitating appropriate referral to the clinic

Ensuring timely investigations to monitor changes during pregnancy

Formal MDT process after each joint clinic

Formulating delivery care plans for medium/high risk deliveries

The cardiac obstetric clinic currently delivers care predominantly to the West of Scotland population. Whilst patients from all regions are seen within the clinic, and also pregnant patients are seen at outreach clinics, a similar model of care does not exist in the Northern and South East and Tayside regions. One of the challenges for the developing network is to establish a single model of care for this group throughout Scotland. A recent development a national clinical network linking clinicians providing cardiac obstetric care. This forum would allow the discussion of current and past cases sharing experience between clinicians across Scotland allowing better co-ordination and common clinical management approaches. The first meeting will take place on the 15th of June 2016 with engagement from clinicians across Scotland. There is a further meeting planned with the Royal College of Physicians and Surgeons in Glasgow in September 2016 with involvement of the Chief Medical Officer.

B2 d) Research

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A successful research programme is also an indicator of a high quality clinical unit. It brings with it recognition of the service and in an area with limited evidence there is much greater responsibility to contribute to increase understanding of the clinical outcomes of our interventions and the physiological processes underlying ACHD. Integral to the success of both the clinical and research areas is adequate staffing support at all levels. Clinical fellows will be required not only to support the clinical service but also to allow the development of research programmes.

SACCS participates in multicentre ACHD research studies. SACCS is currently an investigator site for the AIMS trial looking at the additional efficacy of irbesartan therapy when added to standard care in patients with Marfan syndrome. The hypothesis is that this treatment will help to slow aortic root dilatation and delay the time to surgical repair of the aorta.

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We have 2 fellows who have developed links with Dr Pardeep Jhund of the University of Glasgow, who has a proven record in the study of epidemiology in cardiology. An initial interrogation of a dataset from ISD has already yielded results with the provisional findings accepted for presentation at the European Society of Cardiology.

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B3 Safe B3 a) Risk Register

Title Description Rating (initial)

Rating (current)

Rating (current)

Opened

SACCS surgical staffing Adult congenital cardiac surgery is complex. Frequently the cases are redo operations which can be challenging to safely enter the chest. The cases are often lengthy and complex. There is a significant benefit to the safety and delivery of the surgical procedure if there is good surgical support in theatre. This would optimally take the form of an advanced surgical trainee. The additional benefit to the SACCS Service of an advanced surgical trainee would be in the perioperative dare and preparation and presentation of cases at the Multidisciplinary Team Meeting, Clinical Governance Meetings and Morbidity and Mortality Meetings. The presence of an advanced surgical trainee relieves some of the challenges of cross-set working by the working by the SACCS surgeons.

16 16 High 12-Jul-2013

Inability of current SACCS clinical service to cope with increasing demand and expectation with a single Cardiologist

The SACCS service has one substantive consultant in post since the departure of one consultant at the end of March 2015.

Single cardiologist input into MDT may impact MDT review processes. There is the potential that if the service fails then there is an impact on the sustainability of the Paediatric service. Update - April 2016 There are now two SACCS clinical fellows in position and we currently in the process of negotiating the start dates for 2 new SACCS Consultants

15 15 High 17-Dec-2014

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Psychology support for SACCS One of the recurrent features in our patient consultation is the desire for increased availability to access psychology support for our patients. Our patients have often had multiple intervention from early childhood. Their chronic health issues impact on their daily living, confidence and relationships. At present SACCS does not have any specific and dedicated psychology service. The SNAHFS psychologist sees a number of our patients on an ad hoc basis. This support has been exceptionally beneficial to these patients. The SACCS team had created a business case to seek funding for formal psychology support for our patients, however, this business case did not proceed on the basis that funding was limited.

15 15 High 1-Jun-2012

Lack of IT database - longterm tracking of patients

Previous plans for a bespoke IT system for SACCS discontinued due to the implementation of TrakCare and the functionality this may offer. There are currently no plans to use TrakCare Alerts to identify patients of higher risk, for example, with learning disabilities and patients requiring Fontan. Risk of losing contact with patients - for example those referred to the WoS and GGC regional ACHD clinics now being discharged to local cardiology, and patients on the SACCS waiting list being removed for appointments with another clinician. There is no master list/template of patients for long term follow-up. Clinical Portal does not identify SACCS patients or Alerts.

12 12 High 20-Oct-2015

Elan conduit and stentless Elan valves

In 2010 Vascutek released a product known as the Elan RVOT Conduit. This is a CE marked product. It was designed by congenital cardiac surgeons to address a specific need in congenital cardiac surgery. The increasing number of patients is challenging the availability of Homografts for the right ventricular pulmonary artery position. The RVOT Elan Conduit was designed to allow a surgeon to tailor the conduit to the individual anatomy. This would then act as a potential landing zone for future interventions by transcatheter technique. All of these features made it a very attractive product. In 2011 a total of 25 patients had received the RVOT Elan Conduit. Eighteen in the Golden Jubilee and 7 in Yorkhill. One of the patients presented acutely with critical obstruction of the right ventricular outflow tract. This required urgent surgery with replacement of the conduit with a Homograft. This index case was the first of a number of cases that presented with acute deterioration.

20 6 Med 12-Jul-2013

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In total 8 of the 18 cases implanted at the Golden and 3 of the 7 cases implanted at Yorkhill (all of whom have subsequently transitioned to the adult hospital) have required intervention. No mortality has been associated with this device, however, 7 number of patients have had severe morbidity associated with their representation. The cases were reported to the Medical Director when the SACCS Team became aware of the problem. Investigations were taken forward locally and also with other implanting centres in the UK. Other implanting surgical centres were written to advise them of our concerns. The MHRA were advised as were Vascutek, the company. A decision was made to stop implanting the RVOT Conduit. After extensive discussion and commentary from the MHRA the Golden Jubilee still stocks the RVOT Elan Conduit. This is felt to be appropriate as in case of emergency when a Homograft is not available it would be appropriate to use the RVOT Elan Conduit. The patient would be advised of the procedure as would the SACCS Cardiology Team who would introduce close follow-up to monitor for any potential deterioration in conduit function. For the patients who have not suffered conduit failure they continue on 6 monthly screening with echo and intermittent MRI scan. Of the patients undergoing regular follow-up currently (December 2014) 9 do not exhibit any evidence of conduit deterioration whilst 5 are demonstrating progressive deterioration in valve function that may in time require further intervention. As part of the ongoing assessment of the RVOT Elan Conduit cases it became apparent that 5 Elan valves (a valve designed for the aortic position) had been implanted in the pulmonary position. The surgeons’ logic was that the stentless valve offered haemodynamic benefits in the pulmonary position. Further review identified that of the 5 cases 3 required early re-interventions because of valve failure. Of the above cases, 1 patient died, this was not related to the device, and one patient had a further procedure. These cases were reported to Vascutek the company. After consultation with the Medical Director and Governance structure the MHRA were not notified as the valve was not designed for the pulmonary position. It should be noted that within congenital cardiac surgery there are very few specifically designed products for the specific cases and anatomy that present.

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Pulmonary Hypertension drug National Audit Database

There are delays in the submission of data into the national CCAD database. This submission is essential to allow the service to be recognised by peers. If the data is not submitted the funding would be under threat, and the prescribing rights of the SACCS clinicians under review.

20 6 Med 30-May-2011

Bed Capacity for SACCS patients On a regular basis NSD Pod does not have sufficient capacity to accommodate SACCS patients. This results in these patients being boarded out to other clinical areas that may not have the required nurse to bed ratio or the clinical specialist skills to fully assess the needs of SACCS patients. The risk is that these patients my deteriorate and the specialist clinical skills may not be available to action the appropriate clinical care.

6 6 Med 31-Dec-2015

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B3 b) Clinical Governance

To achieve and maintain high quality care, SACCS has developed a clinical governance structure that operates within that existing within the Golden Jubilee National Hospital. In addition, clinical governance of the specialist service activity outwith the Specialist centre will remain the primary concern of GJNH although interaction with clinical governance structures present in other hospitals in Scotland is anticipated.

Through 2015 the governance structure had weekly meetings with the governance lead, governance departmental representative, and a representative from the nursing team. They reviewed ongoing governance issues and address issues in a timely fashion. The work supported the weekly team debrief held after the MDT. Unfortunately changes in the clinical governance department have stopped this structure and a new governance model is in discussion.

SACCS clinical governance meetings are held on a quarterly basis and attended by representatives from all the disciplines involved in management of ACHD patients. The findings and actions are then passed upwards to the divisional clinical governance committees.

The group also meets quarterly for morbidity and mortality meetings. The learning points are communicated within the group and we are actively working to ensure that learning points are disseminated within the trust and amongst our national colleagues.

B3 c) Healthcare Associated Infection (HAI) and Prevention and Control of Infection

Robust prevention and control of infection measures are in place within the GJNH which apply to each point in the patient pathway. Each area that the patient may visit is subject to regular audits including hand hygiene compliance, standard infection control precautions, environmental and housekeeping audits as well as specific detail of any organisational potential HAI.

The Senior Charge Nurses throughout the organisation have a specific focus within their remit to ensure ongoing compliance and attention to measures to combat HAI are in place, audited and acted upon. CNM Peer Reviews were introduced in 15/16 to quality assure the SCN SICPs compliance monitoring process.

All patients are screened for MRSA on admission to GJNH., and Carbapenamase producing enterobacteriacaea (CPE) risk assessment has been introduced to the infection assessment for all patients.

Staphylococcus.epidermidis

Staphylococcus epidermidis is a coagulase-negative staphylococcus. It typically lives on the human skin and mucosa. S. epidermidis is one of five most common organisms that cause HAI and causes infections on prosthetic valves, cerebrospinal fluid shunts and joint prosthesis.

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From May 2014 a series of Staph epidermidis infections in patients following congenital cardiac surgery were identified. The Prevention and Control of Infection Team worked closely with Key Stakeholders, the Medical Director, Nurse Director and Clinical Governance Department in an investigation related to S.epidermidis infection post cardiac surgery and implemented enhanced control measures.

No further cases have been noted.

Staphylococcus aureus bacteraemia (SAB)

Historically SAB rates are very low within the Board despite the vulnerability of patients and essential device use. An increase in SAB was noted in 15/16. Each SAB is subject to enhanced SAB surveillance to determine the root cause and possible learning from each event. As a result ,device use was noted to be a common risk factor in this increase, in particular the use of IABP.

The local team worked closely with the Prevention and Control of Infection Team and partners in Health Protection Scotland (HPS) to implement control measures. These included the development of IABP insertion and maintenance bundle and associated compliance monitoring process.

Lessons learned have been shared with the Division Governance Group and progress monitored and reported via the HAIRT report.

Scottish Patient Safety Programme (SPSP) within NSD Ward

Various improvement and safety bundles are completed by nursing staff and consultant cardiologists. These bundles allow us to audit our management of patients using evidence based therapies on an ongoing basis. Data collected over the past year has shown areas where further improvement work and adaptations to the current bundles are required. Sustained compliance has not been achieved as yet but throughout next year the focus will be to test changes made, using the PDSA model for improvement and aim towards 95% or above compliance with the bundle and achieve sustainability. CVC insertion, VTE and hand hygiene data is good. Action plans are an integral part of the data collection process and work is ongoing with the completion of these. A major improvement work carried out within the hospital has been the introduction of a new Intra aortic Balloon pump policy, this involved clinicians and Nursing staff from both surgical and medical divisions within the hospital. Following the introduction of the HAI standards in 2015, there was recognition that there was little evidence to support the insertion of PVC cannula and the subsequent care of the device. Therefore the PVC insertion and maintenance bundle was rolled out throughout the hospital following a successful pilot within one of the Cardiothoracic wards.

B 3 d) Adverse Events

There have been 3 incident reports under the SACCS service in 2015/16, 2 of which related to communication issues.

Areas for improvement

Incorporation of new national framework for Scotland for learning from adverse events through reporting and review due in early 2015/16

Further development of clinical governance structure.

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Areas of strength

Much improved Clinical governance processes which ensure involving and engaging staff fully in the review processes.

Good Practice

Positive focus on ensuring patient and family involvement

Robust decision making around treatment planning and communication of this with patients.

B 3 e) Complaints / Compliments

Complaints and potential risks are processed via the Datix Risk Management Information System and acted on accordingly. The governance of response times is measured through the Corporate Scorecard.

During 2015/16 there was one complaint which was subsequently investigated and partially upheld by the Ombudsman.

B4 Timely (Access)

B4 a) Waiting / Response Times

The patient administration system, TrakCare, was implemented in GJNH in June 15, which results in dual report of waiting time this year only, pre and post Trak introduction.

For both inpatient and outpatient waiting times, all TTG guarantees have been met in 2015-16; however numbers of true new patients for outpatient review remain small, with the majority of outpatient activity undertaken focused on ongoing review.

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Review Waiting List

Managing the review patients is challenging with the current medical vacancies, however a number of measures have been implemented to manage this list and ensure clinically urgent patients are reviewed timeously. These measures are listed below:

• Increase numbers of slots in the consultant clinics • Training fellows to assess outpatients with consultant supervision • Increased nurse led clinics • Additional clinics – approximately 1-2 full day clinics per month • Flag clinically urgent patients to ensure booked in timely manner

2 consultant appointments were made with expected start dates of August 2016. Clinic capacity will increase with these appointments and the waiting times for the review patients is expected to improve towards the end of 2016.

SACCS Cath Lab Waiting List

The numbers waiting for inpatient cath procedures is fairly steady at around 10-15 at any given time point. The list is clinically managed by one of the SACCS Advanced Nurse Practitioners. All patients have been treated within TTG guarantees.

02468101214161820

Axis Title

Number on SACCS Cath Waiting List April 15‐ June 15

Available Patients Unavailable Patients

42

0

2

4

6

8

10

12

12‐Nov‐15 12‐Dec‐15 12‐Jan‐16 12‐Feb‐16 12‐Mar‐16

Axis Title

Number on SACCS Cath Waiting List Nov 15‐March 16

Available Patients Unavailable Patients

Waiting list for SACCS Cardiac Surgery

Figure 24

Waiting list distribution for SACCS Cardiac Surgery

0 - 3 Weeks 3 - 6 Weeks 6 - 8 Weeks 9th Week Over 9 Weeks

Figure 25

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44

he number of patients on the waiting list for SACCS Cardiac Surgery has reduced over recent months after

he number of patients referred for cardiac surgery has dropped within the last few months which has helped

he unavailable waiting list is higher in the early part of 2015 due to patient advised unavailability with several

B4 b) Review of Clinical Pathway

he model of care outlined in the SACCS Clinical strategy places great emphasis upon the delivery of to

he complexity of the cardiac anomaly can be used to provide some guidance about the level of care that is

1. Simple – care provided by local cardiologist/primary care

is critical to appreciate that these groupings represent only a guide to the anticipated level of care required.

ACCS led care indicates that decisions about patient management should be made in conjunction with SACCS specialists. Care remains shared with the local team and is not provided exclusively at the Golden Jubilee National Hospital

Ta busy year within cardiac surgery. There were several challenges in delivering the 9 week internal waiting time target in 2014 due to surgeon availability given the specialist nature of this surgery as well bed pressures which were challenging in the early part of 2014 but have improved throughout the year. All patients were treated within their treatment times guarantee.

Treduce the wait for patients and the available and unavailable categories are actively managed to ensure they are given surgical dates as soon as reasonably possible.

Tpatients deferring their surgery until the summer months. Many of these patients are in full time education – and defer their care until their holidays.

Teffective shared care. Ensuring that patients have excellent local services with support from and accessthe most expert level of care when required necessitates the development of a clinical ACHD network.

Tlikely to be needed by an individual

2. Moderately complex – shared care with SACCS

3. Severely complex – SACCS led care

ItThree caveats must be acknowledged:

S

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ex

oupings is inevitable.

nic

nvenience.

ould allow:

• Gains in education and expertise empowering the local centre; • Improvement in quality of patient care locally;

e; and

rtise within local units. The current ACHD service in

• Aberdeen Royal Infirmary • Raigmore Hospital, Inverness

unfermline se

ed over the years in these units and identified local cardiologists he addition of SACCS support to these clinics will offer

ubstantial benefits. Other regions within Scotland will require a greater development of local services.

f the specialist service. Additional aspects for the specialist service as the network develops will include the

Grouping by anatomical complexity is a guide only –simple cardiac lesions may be associated with complmedical issues, whilst some repaired complex lesions may present no major management concerns. Movement between the gr

All patients aged 16 and over with congenital malformations of the heart and great vessels should be seen atleast once by an ACHD specialist either at the Golden Jubilee National Hospital or at a local ACHD clidepending upon complexity and geographical co

Providing support to local clinics from attendance by ACHD specialists from SACCS is a key component of the model. Substantial benefits in patient care can be expected from this approach. More specifically, this w

• Specialist ACHD care delivered locally;

• Greater cohesion with the SACCS servic• Facilitating local transition arrangements.

A key message of the strategy is to build on existinScotland has well established local clinics in the following locations:

g expe

• Edinburgh Royal Infirmary

• Perth Royal Infirmary, • Queen Margaret Hospital, D• Borders General Hospital, Melro

Substantial ACHD expertise has been accruhave developed a significant interest in this area. Ts

The Specialist Centre will ultimately be responsible for defining the quality of care to this population of patients through the network. High quality assessment, decision making and intervention are central functions oprovision of emergency care and advice, together with support of local services extending beyond the attendance at local clinics

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pecialist advice. SACCS needs to provide support to CHD patients who are acutely unwell and are often at their most critical need for specialist care. Many units

• Transfer of appropriate patients to GJNH for management • Out of hours support.

ational commitment to

to cardiologists in post; • Ongoing training for Cardiologists with an interest in ACHD; • Regular ACHD educational meetings to enhance the network with an annual ACHD meeting and

in between rainee core curriculum;

which SACCS can communicate important developments nd clinical issues to relevant clinicians. In turn, local units can raise issues of concern. Ultimately,

Whilst successful implementation of the outreach network will improve communication and local care, it will also increase the need for the provision of emergency sAstill do not contact SACCS to ask for advice when patients known to the specialist service admitted present as emergencies.

Issues that the outreach network will need to explore to assist with the delivery of emergency specialist advice to local centres will include:

• Use of telemedicine to review local investigations and provide advice to local teams.

Education will also be a key resthe network and to the training of future cardiologists.

ponsibility for the SACCS incorporating both an educ

The focus will be on:

• ACHD training

smaller focussed educational sessions • Formal training in ACHD as part of the cardiology Specialist T • Providing additional arrangements for trainees who wish to become either specialists in ACHD or

cardiologists with an interest in ACHD.

The ACHD network will by itself have major gains in facilitating communication on both an individual and a more global basis. It will allow a mechanism with aimprovement in patient care is to be expected. Whilst electronic communication will undoubtedly form the backbone of the network, teleconferencing and network events will augment interaction.

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ther key communication tools include:

• an individualised written care management plan for each individual patient following specialist review; mation through information technology solutions; ocal clinicians involved in patient care

• development and maintenance of a register of Scottish ACHD patients encouraging central collection of patient information

cs from the National Service; • a clinical Adult Congenital Heart Disease network • a structured education and training programme for current and future cardiologists to secure the

e communication and clinical support to ensure the highest quality of

B5 a) Patient Carer / Public Involvement Patient engagement erson Centred

ilee Foundation (GJF), Patient Focus and Public Involvement (PFPI) and Equality and iversity activity comes under the Involving People Strategy as mentioned in previous reports and this work

ommittee

ts of Patient Focus Public Involvement (PFPI).

ur Non Executive Board Members and is attended by representatives of our

O

• increased sharing of patient infor• correspondence shared with all l

In summary therefore, the clinical strategy will deliver a consistent, equitable, Scotland wide referral pathway for Scottish Congenital Cardiac patients through:

• a shared care model that ensures patients are supported by local provision but can access expert level of care when required;

• specialist clinical input at local ACHD clini

sustainability of ACHD care; and • an improved model of effectiv

clinical care is provided.

B5 Person Centred

P

Within the Golden JubDcontinues.

Person Centred C

Our Person Centred Committee (PCC) provides assurance to the Board that appropriate structures and processes are in place to address issues of diversity, equality and human rights as well as the governance requiremen

Our PCC is chaired by one of oExecutive Team, the Chair of our Quality Patient Public Group and members from the Staff Partnership Forum. The Executive Lead is our Director of Human Resources.

48

e believe that in the planning and delivery of care and services, and in activities which promote improved spective of any of their defining characteristics and

a way that respects diversity and promotes equality respecting the wish of the individual. The central ing people, everyone will benefit.

coordinate the delivery of the GJF Involving People Strategy . In the broadest terms the remit of the group is to provide coordination and

t to ow this from feedback we get from patients and

ross the organisation. These values are closely linked to our

nd Equality.

our responsibilities; and

aim is to embed equalities across our organisation. Our Equalities group is comprised Side representatives, the Leads for each protected characteristic and our Diversity

our Director of Human Resources.

r our Involving People Strategy is our volunteer service. We have had

st under 1,000 sessions, contributing almost 3,000 hours of support to ed services.

.

Involving People Group

Wcare and well being, people have a right to be involved irreinconcept is simple – by involv

The Involving People Group was convened toand associated action plansleadership to enable effective delivery of the strategy.

Our Involving People Group coordinates the delivery of this strategy. The Executive Leads are our Nurse Director and our Director of Human Resources.

Equalities Group

What we do or deliver in our roles within the GJF is important, but the way we behave is equally importanour patients, customers, visitors and colleagues. We kncustomers, for example in “thank you” letters and the complaints we receive. We have worked with a range of staff, patient representatives and managers to discuss and promote our shared values which help us all todeliver the highest quality of care and service acresponsibilities arou

Our values are:

Valuing dignity and respect;

A ‘can do’ attitude;

Leading commitment to quality;

Understanding

Effectively working together

Our Equalities group’sof senior managers, Staff Champions. The Executive Lead is

Volunteers

A key element in how we delivevolunteers in place for over 10 years and currently have more than 70 active volunteers - over half of these are patient-facing with others working in an advisory capacity, e.g. as lay representatives on governance groups, contributing to policy reviews or reviewing patient information documents.

In 2015, our volunteers provided jupatient focuss

49

s as a

and partner) signing up to volunteer within GJF to provide additional input as a

freely. In 2015/16, over 55 ward visits were carried out with a minimum of five

nual Review, a very worthwhile session was held with Minister for Public Health, the CEO

Our Volunteer Forum, which meets quarterly and is chaired by one of our Non-Executive Directors, actconsultative group for support, development and expansion of the service. The Head of West Dunbartonshire Community Volunteering Service attends this group to provide advice on aspects of volunteer recruitment,selection and training.

The highlights of our volunteering developments this year include;

Another transplant patient (peer supporter.

Volunteers have been trained to visit wards and departments to discuss the quality of care from a patient perspective. Using volunteers who are members of the public or former patients reduces formality, allowingpatients to speak moreindividuals interviewed during each session. Feedback from these questionnaires is reported back to the ward manager and the team. This information is used to track the impact of improvement initiatives.

As part of our AnNHS Scotland and members of our Board. Paul Gray CEO sent a message on twitter “Utterly inspired by conversation with patients at @JubileeHospital”. Alongside representatives from the QPPG, this year’s attendees list included a heart transplant patient and his wife; a young SACCS patient and his parent; a patient who had a hip replacement and also a cataract procedure; a Thoracic patient who is now providing peer support as a volunteer for new patients; and a patient who after having a triple bypass helped us prepare some Patient Voices video clips for Youtube to help inform future patients.

We held our annual volunteer day in May 2015. The event was attended by our Chair and the Non-ExecutivDirector responsible for Chairing our Volunteer Forum.

Two cohorts of volunteering placements for 6th year students in the local Secondary schools have successfully completed. This involved 16 students from two local schools each student contributing 10 hours of volunteering within the hospital.

SACCS: Young volunteers took part in our Annual Transition Day for patients and fa

e

milies moving from

that action can be put in place to assure greater satisfaction with the

of the hospital, and within the NSD pod has highlighted system to reduce unnecessary noise and disturbance for

ss areas of interaction or practice that does not seem to be in line with person centred care.

paediatric services into the adult service at GJF.

Caring Behaviours Assurance System. The Caring Behaviours Assurance System (CBAS) is a way of exploring the perceptions of everyone involved in the delivery of healthcare with a view to enhancing understanding and co-operation, soquality of care given and received.

The programme has embedded into all the areas areas of focus such as improving the door entry patients.

The nursing teams and wards have identified their Person Centred Care Quality Indicators that are used to improve Caring Behaviours within clinical areas. This includes ‘challenging conversations’ where staff is encouraged to openly and fairly discu

50

Clarified and strengthened the accountability processes regarding quality of care from ‘bedside to

inues and is now embedded as part of the

e via the al focused

patients and relatives with the ‘Emotional Touchpoints’ process which gives highly specific

6 a) Fair for all: Equality & Diversity

The Learning Disabilities Standards group is well embedded within the hospital and this group has provided standards for Vulnerable People. This group has had

Lab staff regarding the congenital patients and has produced information for enital patients with LD.

6 b) Geographical access

onsiderable, sustained focus on reviewing the patients currently known to the service to ensure they are aligned to the most clinically appropriate review, whether National or

congenital cardiac management will be evident in data for

The incorporation of this through all nursing units in 2015/16 has;

Increased confidence that nurses and allied health professionals are caring and compassionate in their practice

Gathered information which would inform action to enhance the experience of patients/service users.

boardroom’.

Regular assessment of the Person Centred Quality indicators contnurses’ role within the hospital.

B5 b) User Surveys

We ensure that each patient/carer/ relative is offered an opportunity to feedback on their experienchospital wide ‘SpeakEasy’ process and, looking to the future, GJ is robustly embracing the individufeedback fromfeedback on the impact of nursing care as described above.

B6 Equitable

B

We strive to deliver a service that embraces all aspects of Equality & Diversity which is a core component to the delivery of high quality care.

work towards meeting the action plan around QIS LD active representation from Cath staff in the cath lab/ CDU regarding cong

B Throughout 2015/16 there has been a c

non National. The ‘non national’ ACHD clinic review in the West of Scotland is well embedded and with the exception of Lanarkshire and Dumfries and Galloway, this service has migrated from the current location within GJNH out to the base health boards. This has had a significant impact on the workload of SACCS and represents the adoption of the model of care within the region.

This redistribution of the West of Scotland ongoing 2016/17 onwards, which will go some way to address the geographical variation in the access to SACCScare.

51

rn, uth East and Tayside regions. This has maintained the shared model of care in which patients can

whilst maintaining access to the specialist service when required.

The major challenges face the service for the next year:

emand outstripping current capacity in all specialist testing and consultant assessment. The team are ork for the fellows.

stablish regular MDT meetings and a national

The year 2015-16 has been a challenge. However, together we have worked to achieve a cohesive team. We

In line with care standards for patients with ACHD in the rest of the UK, the development of Standards of

tandards. Patient involvement will be paramount in all stages of e process.

ssisting in maintaining the continuous development of high quality care. Further expansion in nursing roles

ith a

Whilst the recent developments will allow major improvements in patient care, the major challenge facing

doption of the shared care model and the research planned with our current fellows may help address this question.

Section C: Looking Ahead/Expected Change/Developments

The major developments during the current year have been the recruitment of new consultants for the team. Throughout the year we have worked to maintain the outreach support to all but one hospital in the Northeand Soaccess high quality local services

Dworking to optimise capacity with nurse-led clinics and increasing the clinic w

Further development of the Clinical ACHD network to allow support of all existing local ACHD clinics

Helping to address concerns with regard to emergency specialist advice, Standards for ACHD care, IT solutions and education

Further development of the cardiac obstetric service to enetwork of cardiac obstetric care providers

Section D: Summary of Highlights (Celebration and Risk)

have consolidated links between local and national ACHD services to maintain the shared care model.

ACHD care has progressed and will launch in the next months. This will demand further engagement tosupport the services in striving to meet the sth

Other highlights from the year include the development of the nursing roles within the specialist service ahas accompanied the recognition of the need for nurse led components of the service. The successful recruitment of clinical fellows has been an excellent development and their retention for 2 further years wresearch programme will further support the service.

The 4th Scottish Adult Congenital Cardiac Conference was successful and has become an annual event for the future helping to maintain links and educational support throughout Scotland.

SACCS in the coming year will be clinical availability as the consultant resource is limited and activity continues to grow.

The challenges facing the ACHD network include the need to understand why the geographical variation in access to care persists despite the almost universal a