National Waiting Times Health Board

Golden Jubilee National Hospital

SCOTTISH ADULT CONGENITAL CARDIAC SERVICE (SACCS)

ANNUAL REPORT 2014/2015

2

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 ................................................................. 3

Section B : Quality Domains ......................................................................................................................................... 6 B1 Efficient ............................................................................................................................................. 6 B1 a) Report of Actual v Planned activity ............................................................................................... 6 B1 b) Resource use ............................................................................................................................. 12 B1 c) Finance and Workforce ............................................................................................................... 15 B2 Effective ......................................................................................................................................... 16 B2 a) Clinical Audit Programme ........................................................................................................... 16 B2 b) Clinical Outcomes/ complication rates / external benchmarking................................................. 16 B2 c) Service Improvement .................................................................................................................. 22 B2 d) Research .................................................................................................................................... 25 B3 Safe ............................................................................................................................................... 26 B3 a) Risk Register .............................................................................................................................. 26 B3 b) Clinical Governance ................................................................................................................... 32 B3 c) Healthcare Associated Infection (HAI) and Prevention and Control of Infection ........................ 32 Scottish Patient Safety Programme (SPSP) within NSD Ward ............................................................ 33 B 3 d) Adverse Events ......................................................................................................................... 33 B 3 e) Complaints / Compliments ......................................................................................................... 33 B4 Timely (Access) .............................................................................................................................. 34 B4 a) Waiting / Response Times .......................................................................................................... 34 B4 b) Review of Clinical Pathway ........................................................................................................ 37 B5 Person Centred.............................................................................................................................. 39 B5 a) Patient Carer / Public Involvement Patient engagement ............................................................ 39 B5 b) User Surveys .............................................................................................................................. 41 B6 Equitable ......................................................................................................................................... 41 B6 a) Fair for all: Equality & Diversity ................................................................................................... 41 B6 b) Geographical access .................................................................................................................. 41

Section C : Looking Ahead/Expected Change/Developments .................................................................................... 41 Section D : Summary of Highlights (Celebration and Risk) ........................................................................................ 42

3

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 Yorkhill and provides specialist ACHD care for the Scottish

Congenital Cardiac Network.

Nationally designated and formed in 2007, the Service is based at the Golden Jubilee National Hospital in Clydebank,

and is managed by its own Special Health Board, 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 Beardmore Hotel attached to the hospital, managed by the same Health Board, also 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.

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

Transition clinic at Yorkhill 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 under 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 for

one reason or another.

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 Yorkhill

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

4

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 indicating 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 culminating in a

clinical review and care plan. If the result of the assessment is to offer intervention, this is taken forward with a plan for

readmission. 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.

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. The previous year saw a

major development in the establishment of a regional ACHD 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 regional team. Although the regional clinic is currently located at the

Golden Jubilee National Hospital, the service will move 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.

5

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 ASSESSMENT

1.Clinical Review

2.ECG

3.Echo

4.Bloods

5.CXR

6.MRI/CT

7.CPET

8.Holter Monitor

9.ABPM

VETTING

NO

Booking OfficeReferral

accepted?

Referral

accepted?YES

Discuss at

MDT?

Discuss at

MDT?

NO

YES

Written Care

Plan

SHARED CARE

Determine interval

for review 1-5

years

Discharge back

to local referrer

(Local Care)

Discharge back

to local referrer

(Local Care)

MDT Quorum:

2 Cardiologists

2 Surgeons

Back to referrer

with advice

Back to referrer

with advice

Further

Investigation

Medical

Therapy &

Intensive

Review (OOCE)

Catheter

InterventionSurgery

Pulmonary

Vasodilator

Therapy

Refer for

Device

Opinion

Refer for

EPS/RFA

Opinion

Refer to

other Centre

E.g. TCPC

Refer for

Cardiac

Transplant

Refer to SPVU

Referral from

Cardiologist

Referral from

Cardiologist

Re-Referral from

GP

Re-Referral from

GP

Referral from

Physician

Referral from

Physician

Local reviewLocal review

6

Section B: Quality Domains B1 Efficient B1 a) Report of Actual v Planned activity

SLA activity Actual activity

Surgical procedures 100 -120 98 Catheter interventions 80 - 90 106

MRI scans 400 -425 507 Outpatient clinics 90 199

(6 SACCS, 143 Assessment, 12 Sat, 6 Nurse) (22 Obstetric, 12 Transition)

Pulmonary hypertension patients 40-45 44

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 procedures (Heart Hospital, London)

Surgical activity has fallen below the agreed Service Level agreement for the current year (Fig 4). This reflects the

reduced clinical capacity following the resignation of one of the Consultant Cardiologists in 2013. There is a backlog 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 as well. A major challenge continues to be 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 2014

Figure 3: Surgical case mix 2014-15

Figure 4: Surgical activity 2008-15 set against SLA

7

: Surgical activity by health board 2014-2015

15

15 set against SLA

8

Catheter intervention

The invasive service is delivered by Dr. Niki Walker with the paediatric interventional team in Yorkhill. Dr Niki Walker

now works with Dr Ben Smith from the Yorkhill 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.

General anaesthetic provision

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 now been achieved by our CCU nurses to care for patients post transcatheter pulmonary valve implantation.

Figure 5: Catheter lab case mix 2014-15. Shunt device includes ASD closure, PFO closure and PDA closure.

9

Figure 6: Catheter lab activity 2014-15 by health board

Figure 7: Catheter lab activity 2008-2015 set against SLA Magnetic resonance imaging Cardiac MRI remains the cornerstone of imaging in the ACHD patient. The ACHD Cardiac MRI programme at the

Golden Jubilee National Hospital continues to provide high quality and comprehensive imaging central to the

assessment of patients within the specialist service. Although there has been a growth in the number of centres the

complexity and need for specialist supervision is a limiting factor to all but the specialist centre

10

Figure 8: MRI activity 2014-15 by health board ACHD MRI activity has grown markedly in the last years despite the provision of the service from a single consultant.

Activity is now substantially above the agreed SLA. Increased capacity has been created by lengthening weekday lists

into the evening and by performing weekend lists and it is hoped that an evening list will also allow greater numbers of

patients to be scanned.

Physiological stress cardiac MRI continues to be used in the clinical assessment of ACHD patients. This novel

technique, not currently available routinely in any other ACHD centre in the UK, offers the opportunity to obtain hitherto

unobtainable detail about the cardiovascular response to exercise in complex physiologies, thereby facilitating optimal

clinical decision making. Further, the introduction of cardiac MRI scans under general anaesthetic during 2012/2013

has allowed patients previously unable to have scans as a result of claustrophobia or special needs to access this

valuable investigation. The widespread use of MRI conditional pacemaker devices in patients requiring permanent

pacing has also allowed the technique to continue to be used in a population previously denied the technique.

Figure 9: MRI activity 2008-15 set against SLA (part year activity for 2008-2009)

11

Multidisciplinary Assessment The comprehensive clinical assessment of patients incorporating high quality complex imaging (echo/cardiac MRI/cardiac CT) and detailed cardiovascular testing (cardiopulmonary exercise/6-minute walk test), with specialist clinical and multi-disciplinary review has become the major clinical activity of the service. Potential interventional outcomes from the service are 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 and may allow discharge from routine follow-up by specialist services. Irrespective of the outcome, an individualised care plan is produced from the process, detailing the need for treatment/intervention together with advice concerning local and specialist follow-up. For many patients referred to SACCS for the first time, the assessment process may be their introduction to the specialist service. The Beardmore Hotel attached to the Golden Jubilee National Hospital allows for high quality accommodation away from the ward environment during this process. This arrangement is not only cost-effective but more appropriate to many patients’ needs. Carers and relatives are able to stay with the patient in the hotel, providing care and support during the visit. This is particularly important for individuals with special needs. Admission to the National Services Division ward is organised for those 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-up. The time interval for subsequent re-assessment is determined from the review with shared care continuing in the intervening period through the local service unless there is a change in the clinical condition.

Figure 10: Assessment activity 2014-2015 by Health Board

12

B1 b) Resource use Bed utilisation

Total bed days in 2014-2015

Mean length of stay (days)

Median length of stay (days)

Range of length of stay (days)

Surgical (99 cases):

Total 1098 12 8 2-61 Catheter Lab (105 cases):

Total 117 1 1 0-25

Figure 11

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

Beardmore 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, the introduction of the

SCCN is allowing greater recognition of the need to transfer some patients to the specialist centre for ongoing

management.

The development of the regional ACHD service 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 the clinic is staffed by

two consultant cardiologists, 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 regional service reflecting inequity of access to local and national services.

13

Figure 12

Figure 13

14

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 43. The table below illustrates the number of patients established onto therapy per financial year

Drug therapy Number of patients

Bosentan only

18

Sildenafil only

16

Ambrisentan only

2

Combination therapy: Sildenafil and bosentan

4

Combination therapy: Sildenafil and ambrisentan

2

Combination therapy: Tadalafil and Bosentan

1

Figure 14

15

B1 c) Finance and Workforce Golden Jubilee National Hospital

SACCS - NSD

Finance Report 2014-15

Profile Actual

WTE 2014/15 WTE Mar-15

Staff Costs

Consultant Cardiologist 4.00 513,686 2.00 362,583

Consultant Cardiac Surgeon 0.30 41,541 0.30 41,541

Consultant Anaesthetist 0.20 25,701 0.20 25,701

Cardiac Physiologist 0.20 11,072 0.20 10,086

SACCS Fellow 2.00 100,100 1.00 18,914

Medical 6.70 692,100 458,825

Liaison Manager Band7 1.00 44,182 1.00 49,810

Clinical Nurse Specialist Band7 1.00 43,823 1.00 37,740

Transition Nurse Band7 1.00 43,823 1.00 40,744

Ward Nursing 55,129 222,451

CICU Nursing 112,211 27,114

Nursing 3.00 299,169 377,859

Data Manager 1.00 26,340 1.00 24,993

Secretary (Band4) 2.00 51,321 1.00 23,625

Admin (Band3) 1.00 21,331 2.00 58,836

Admin / Clerical 4.00 98,993 107,454

TOTAL STAFF COSTS 13.70 1,090,262 944,138

Ward 33,612

Theatre 86,195 86,195

MRI Sessions 50,500 50,500

Pharmacy Supplies 170,307 136,695

Ward Supplies 13,646 47,258

Sub Total 13,646 47,258

Devices 204,063 205,209

Named Drug Costs 454,500 521,262

Sub Total 658,563 726,471

Biochemistry 968 968

Bacteriology 716 716

Haematology 1,395 1395

Other 2,281 2,281

Labs 5,360 5,360

Catering 1,929 1,929

Portering 251 251

Linen 767 767

Cleaning 429 429

Other Costs 12,078 12,078

General Services 15,454 15,454

Maintenance 6,856 6,856

Capital Charges

Overheads 6,856 6,856

TOTAL COSTS 13.70 1,960,448 1,882,232

GA Sessions 151,938 151,938

Melody Valves 157,140

Total 2,112,386 2,191,310

16

Figure 15

Notes: The cost of MRI Sessions is to be capped at £50,000. If the service is aware that this is likely to be exceeded, then the situation should be escalated to NSD immediately.

The maintenance budget has been increased to cover costs for new capital equipment The profile does not include the costs for GA Sessions which has been agreed at £151,938. GJNH are reviewing costs.

1wte fellow in post Apr-Aug. Both fellow posts vacant Sep -Dec 14. 2 fellows appointed and to take up post August 2015.

1wte clinical nurse specialist is on mat leave above costs include cost for band 6 backfill.

2wte new consultant posts funding built into profile

Workforce Head of Operations Ms Lynne Ayton Clinical Specialties Manager Ms Jennifer Hunter Director Dr Hamish Walker Consultant Cardiologist Dr Niki Walker Consultant Surgeons Mr Kenneth MacArthur, Mr Mark Danton, Mr Andrew McLean Clinical Nurse Manager Mrs Jane Rodman Nurse Specialists Mr James Mearns, Mrs Sandra Jansz, Mrs Elaine Muirhead, Mrs Maggie

Simpson (Maternity leave cover for Sandra Jansz) Administrator Mrs Anne Miller MDT co-ordinator Mrs Joyce Fraser-Smith Data Manager (until October 14) Mr Man chun Mo (left November 2014) Medical Secretaries Ms Eleanor O’Neil, Mrs Mairi MacDonald Management Accountant Mrs Fiona Mullen

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.

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

17

Mortality

In the year 2014-15, there were 2 deaths in the SACCS population related to surgical intervention at GJNH.

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 And in the NICOR congenital Annual Report which can be downloaded from the same website https://nicor4.nicor.org.uk/CHD/an_paeds.nsf/vwContent/Analysis%20Documents?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.

18

Morbidity

Surgical morbidity is detailed below:

Complication Number of affected patients

Adult Respiratory Distress Syndrome 1

Atrial Fibrillation 21

Bleeding Peptic Ulceration 1

Cardiac Arrest 1

Cardioverted 2

Delayed sternal closure 1

Inotropes 18

Intra-aortic Balloon Pump Used: Intra-operation 4

Left Ventricular Wall Dissection 1

Low Cardiac Output 2

Minitracheostomy 1

Nasogastric Feeding 7

New Haemofiltration or Dialysis Post-Operatively: Acute renal failure treated with haemodialysis 2

Non sustainable BP despite inotropes - reduced cardiac ouput/ severe metabolic disturbance 1

Multiorgan Failure 1

Other Atrial Arrhythmia 2

Other Cardiac Complication 1

Other GI Tract Complication 2

Other Respiratory Complication 5

Pacing Dependence Delaying Discharge 2

Percutaneous Tracheostomy 4

Permanent Pacemaker 7

Postoperative Elevated Creatinine 2

Prosthetic Valve Endocarditis 1

Psychosis Requiring Treatment 1

Pulmonary Infection Requiring Antibiotics 7

Pyrexia of Unknown Origin 4

Reason for Intra-aortic Balloon Pump Use: Haemodynamic instability 4

Required CPAP 11

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

Return to Theatre: Re-operation for valvular problems 1

Reventilated 3

Sacral Pressure sore 1

Septicaemia 4

Severe Heart Failure 1

Sternal Wound Leak 2

Superficial Wound Infection 2

Urinary Tract Infection 1

Ventricular Fibrillation/Tachycardia 1

Figure 16

19

Morbidity associated with catheter procedures is detailed below:

Complication Number of affected patients

Haematoma 1

Other Complication 2

Other bradycardia 2

Ventricular arrhythmia 3

Haemorrhage - delayed discharge 1

Figure 17

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.

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. GJNH is

currently exploring this arrangement with a view to rationalisation.

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 very young patients and this risk is not reflected in the Acquired Adult Database risk stratification models.

Our overall volumes for ACHD Surgery were the highest in the UK in 2013-14 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 with 10 smaller centres on the database for Congenital Catheter Intervention. 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. 3 surgeons carrying out 143 Benchmark ACHD

Operations and 278 paediatric means an individual congenital surgical operator volume of 140 cases, well above the

UK benchmark of 125 and made so by a large ACHD surgical programme focussed in one centre only. The individual

volumes for intervention are, of course, for 1 operator and, in exemplary best practice, that operator frequently doubles

up with paediatric interventionists from the RHSC.

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.

Surgical Volume Rank Table for UK&I for Congenital Adult Surge

Rank by Volume

Financial Year

Centre

National 2013-14 NATIONAL

#1 2013-14 Golden Jubilee Hospital

#2 2013-14 Queen Elizabeth Hospital,....

#3 2013-14 Royal Brompton Hospital

#4 2013-14 Manchester Royal Infirmar....

#5 2013-14 Leeds General Infirmary

#6 2013-14 Bristol Children's Hospit....

#7 2013-14 University College Hospit....

#8 2013-14 Evelina Children's Hospit....

#9 2013-14 Southampton General Hospi....

#10 2013-14 Freeman Hospital

#11 2013-14 Glenfield Hospital

#12 2013-14 John Radcliffe Hospital

#13 2013-14 Liverpool Heart And Chest....

#14 2013-14 Royal Victoria Hospital

#15 2013-14 Harley Street Clinic

#16 2013-14 Northern

#17 2013-14 Great Ormond Street Hospi....

#18 2013-14 Birmingham Childrens Hosp....

#19 2013-14 University Hospital Of Wa....

#20 2013-14 Alder Hey Hospital

#21 2013-14 St George's Hospital

#22 2013-14 Royal Hospital

#23 2013-14 King's College Hospital

#24 2013-14 Hammersmith Hospital

#25 2013-14 Our Lady's Hospital For S....

#26 2013-14 Royal Sussex County Hospi....

#27 2013-14 University Hospital Of No....

#28 2013-14 Nottingham City

#29 2013-14 St Thomas Hospital

#30 2013-14 Blackpool Victoria Hospit....

#31 2013-14 Basildon Hospital

GJNH %UK & I Total

Figure 18

20

Surgical Volume Rank Table for UK&I for Congenital Adult Surgery Latest Annual Data

Centre Adult Surg

NATIONAL 1202

Golden Jubilee Hospital 143

Queen Elizabeth Hospital,.... 127

Royal Brompton Hospital 123

Manchester Royal Infirmar.... 99

Leeds General Infirmary 91

Bristol Children's Hospit.... 90

University College Hospit.... 82

Evelina Children's Hospit.... 80

Southampton General Hospi.... 78

Freeman Hospital 71

Glenfield Hospital 56

John Radcliffe Hospital 25

Liverpool Heart And Chest.... 23

Royal Victoria Hospital 22

Harley Street Clinic 21

Northern General Hospital 16

Great Ormond Street Hospi.... 15

Birmingham Childrens Hosp.... 11

University Hospital Of Wa.... 10

Alder Hey Hospital 7

St George's Hospital 7

Royal Hospital For Sick C.... 2

King's College Hospital 2

Hammersmith Hospital 1

Our Lady's Hospital For S.... 0

Royal Sussex County Hospi.... 0

University Hospital Of No.... 0

Nottingham City Hospital 0

St Thomas Hospital 0

Blackpool Victoria Hospit.... 0

Basildon Hospital 0

%UK & I Total 12%

ry Latest Annual Data (13 14)

21

Interventional Rank by Volume for UK&I Congenital Adults Latest Annual Data (13 14) Rank by Volume

Financial Year Centre

Adult Cath

National 2013-14 - National Aggregate - 1780

#1 2013-14 Bristol Children's Hospit.... 176

#2 2013-14 University College Hospit.... 142

#3 2013-14 Liverpool Heart And Chest.... 139

#4 2013-14 Leeds General Infirmary 134

#5 2013-14 Evelina Children's Hospit.... 128

#6 2013-14 Glenfield Hospital 110

#7 2013-14 Southampton General Hospi.... 96

#8 2013-14 Royal Brompton Hospital 85

#9 2013-14 Manchester Royal Infirmar.... 85

#10 2013-14 John Radcliffe Hospital 84

#11 2013-14 Freeman Hospital 74

#12 2013-14 Royal Sussex County Hospi.... 68

#13 2013-14 Royal Victoria Hospital 59

#14 2013-14 Queen Elizabeth Hospital,.... 49

#15 2013-14 Hammersmith Hospital 38

#16 2013-14 University Hospital Of No.... 38

#17 2013-14 Nottingham City Hospital 33

#18 2013-14 St George's Hospital 32

#19 2013-14 Great Ormond Street Hospi.... 30

#20 2013-14 Birmingham Childrens Hosp.... 29

#21 2013-14 Golden Jubilee Hospital 28

#22 2013-14 King's College Hospital 22

#23 2013-14 Harley Street Clinic 19

#24 2013-14 St Thomas Hospital 18

#25 2013-14 Blackpool Victoria Hospit.... 14

#26 2013-14 Our Lady's Hospital For S.... 13

#27 2013-14 University Hospital Of Wa.... 13

#28 2013-14 Alder Hey Hospital 10

#29 2013-14 Royal Hospital For Sick C.... 7

#30 2013-14 Northern General Hospital 6

#31 2013-14 Basildon Hospital 1

GJNH %UK & I Total 2%

Figure 19

22

B2 c) Service Improvement

Clinical Strategy and the Scottish Congenital Cardiac Network

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 is underway. 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 achieve the aims of the

network will continue under the auspice of NSD.

Support to Outreach Services.

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 the region.

The West of Scotland Regional Service continues 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

highly specialist care. The regional service is currently located at the Golden Jubilee National Hospital but the intention

is for the service to move to locations within the West of Scotland providing care closer to the patient’s home The

structure of the West of Scotland ACHD service has been agreed through a Project Board and from June 2015 the

patients will be transferred from the regional ACHD clinic in GJNH into newly designated ACHD clinics in their base

health Board.

Education

The third Scottish ACHD Conference was held on June 27th 2014 at the Beardmore Hotel and Conference Centre.

Similar to the previous events, the meeting was well attended and received. 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.

23

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.

The 2nd nursing conference for Adult Congenital Heart Disease was held on 26th June 2014. We are delighted to be involved in a joint medical/nursing conference for 2015. In the last year the members of the nursing team have has significant academic achievements, including the completion of MSc with distinction and others continuing post graduate studies towards completing a MSc. All nurses continue to attend national conferences and maintain links with ACHD nurse specialists throughout the UK.

Medical Workforce

Consultants

Consultant recruitment remains a challenge. The third cardiologist, Dr Colum Owens, was appointed to the National

service in summer 2012 and took up post in October of that year but left the service for personal reasons in September

2013. Recruitment to the third post has thus far been unsuccessful and the service has been left with only two

consultant cardiologists. Activity has nevertheless been maintained through the use of weekend initiatives and has also

been assisted by the development of the regional ACHD service.

Dr Hamish Walker has resigned from the service from April 2015. Initial recruitment has not been successful. A locum

appointment has been made in collaboration with the Royal Brompton Hospital in London. Dr Eva Nyktari will provide

the MRI service initially for 6 months commencing April 2015.

Clinical Fellows

There were 2 vacant clinical fellow positions in 2014/15. Recruitment to these posts has been challenging. However in

the Junior Doctor recruitment round in January 2015 for August 2015 starts these posts have both been filled.

Nursing staffing The service continues with three full-time nurse practitioners. Although one staff member has been on maternity leave since August 2014, the service has been augmented with the addition an additional nursing resource on a part-time basis.

Nurse-led Clinics

2014/15 has seen the development of a nurse-led pre and post intervention service. This has contributed to an improved patient pathway and evidence suggests this will enhance the patient experience. The introduction of nurse led clinics has also facilitated appropriate use of nursing and consultant expertise.

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 will allow the nursing team to extend their role and develop further expertise in ACHD.

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 Downs Syndrome Scotland. Formal established links are in place with local learning disability teams. A talk on learning disability awareness is now delivered by the team at the CSW core skills training session. This will progress the level of care to this patient population.

24

Transition service

The appointment of a third full time nurse allowed the development of a model of care for a nurse led transition service.

Historically run as a single clinic visit at Yorkhill run by the adult team and with little input from paediatric cardiology, the

service fell short of delivering an effective transition from paediatric to adult care. Recognition of the need to provide

transition over several years, starting as early as 11-12 years and addressing key issues early triggered a re-design of

the existing service. Transition needs to allow time for the patient and his or her family/carers to adjust to the change in

medical teams. It must also facilitate the awareness of the health issue for the patient as he/she heads towards

adulthood and independence. Future health needs may be of great importance and may include potential restrictions to

work and lifestyle issues such as pregnancy and contraction. All of these issues need to be address at a time

appropriate for the individual patient with the acceptance that awareness may only develop over several attendances.

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 her colleagues at Yorkhill Hospital have laid the foundation for a new service, describing the

transition pathway and scoping the development of a nurse led clinic. Although the model has been adopted, the full

implementation requires outpatient facilities currently not available. It is hoped that the transition model, if successful,

can be implemented in local services facilitating care nearer to the patient’s home.

Additionally, our Advanced Nurse Practitioners (ANP) have worked in collaboration with nursing colleagues from

Yorkhill to successfully host the first Transition Open Day at the Golden Jubilee National Hospital. Patients and their

families were invited to attend the event from all over Scotland. The event provided the opportunity for guests to meet

with members of the adult team and key stakeholders in an informal environment. Initial evaluation has been extremely

positive and future events are planned. The second transition open day is scheduled for the 22nd of May 2015.

Cardiac Obstetric Service

The cardiac obstetric service continues to provide specialist care to pregnant women with heart disease. Based at the

Southern General 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 Southern. A development during the recent past has been the introduction of

the cardiac obstetric multi-disciplinary team meeting. The 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.

Locus of delivery, dependent upon the associated risks, may be within the local unit in low risk patients; the Southern

General Hospital 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 locus of

delivery. Emergency deliveries of acutely ill pregnant women from cardiac problems are also undertaken at the Jubilee.

Every year, between 4-6 deliveries are performed at the Jubilee.

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

25

• Formal MDT process after each joint clinic

• Formulating delivery care plans for medium/high risk deliveries

The cardiac obstetric clinic, similar to other areas of SACCS, predominantly delivers care to the West of Scotland

population. Whilst patients from all regions are seen within the clinic, and advice offered in others, 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, currently in the

planning stage, is a National Case Review meeting forming the basis for 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.

As part of the plan to maintain capacity, we will introduce a nurse-led pulmonary hypertension (PH) clinic and anticipate that this clinic will:

• Reduce waiting times for new patient referrals

• Ensure current patients are reviewed at six monthly intervals

• Improve patient pathway

• Appropriate introduction, titration and discontinuation of PH therapy

• Develop links with established PH units

B2 d) Research

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 losartan 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

.

26

B3 Safe

B3 a) Risk Register

Title Description Controls in place Consequence (current)

Likelihood (current)

Risk level

(current)

Review date

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. It has been highlighted that a single advanced surgical trainee would not be able to provide a formal out-of-hours rota.

1. Proleptic appointment due in summer 2015 bringing surgical team to 4 Consultants 2. The SACCS consultant surgeons work across sites to ensure care for their patients. 3. The SACCS Cardiology Team lead on post operative care with regular ward rounds and availability to the surgical team for consults. 4. There is ongoing discussion between Yorkhill and GJNH to increase the number of surgical Fellows available to the congenital service across both sites.

MAJOR LIKELY HIGH 30-Nov-2015

27

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. We are very grateful to the SNAHFS psychologist who sees a number of our patients on an ad hoc basis. This support has been exceptionally beneficial to these patients.

1. Currently we continue with limited ad hoc support from the SNAHFS psychology service. They help liaise with local psychology service for individual patients.

2. The SACCS nurse specialists liaise with the patients and highlight specific cases to the SNAHFS psychology team.

3. There is temporary additional psychology support in place until later in 2015.

MOD CERT HIGH 30-Nov-2015

Single Cardiologist Update April 15 -The SACCS service has one substantive consultant in post since the departure of one consultant at the end of March 2015, with recruitment unsuccessful as at April 15. Cardiologist. There are unfilled clinical fellow posts (2 posts) until August 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 22/4/15 - impact changed to moderate as following d/w senior management and NSD, provisions for backfill of absence have been agreed with RBH from the point of single cardiologist cover. Control in place 1. Remote MRI support from locum cardiologist 2. Further work being done to identify potential 2nd cardiologist 3. Two clinical fellow appointments from August

MOD CERT HIGH 30-Nov-2015

28

Outbreak of Staph epidermidis cases

From November 2013 to October 2014, 5 cases of an unusual Staph epi have been identified as significant pathogens in SACCS patients post-operation. Of the 5 cases, one made a prompt recovery after short course antibiotics, one required prolonged antibiotics, 1 had repeated relapse with further resistance to antibiotics but now appears to be improving, one has ongoing treatment since diagnosis in October 2014, and one died after presenting critically unwell to hospital. The risk is that we still do not know the source of infection. This makes prevention of further cases challenging.

1. Infection control has developed an action plan to limit potential exposure of patients to Staph epidermidis from any clinical contact. The action plan is attached. It is important to note that the 5th case occurred AFTER introduction of the ICT measures. 2. SACCS clinicians and Microbiology are actively monitoring for any indication of similar case presentation. The most recent case was detected promptly and managed aggressively to limit the potential harm to the patient. 3. There is ongoing interaction HPS. 4. Formal report due for distribution June 2015.

MAJOR POSS HIGH

29

Elan conduit and stentless Elan valves

In 2011 a total of 25 patients had received the RVOT Elan Conduit. No mortality has been associated with this device, however, 7 number of patients have had severe morbidity associated with their representation. 5 Elan valves (a valve designed for the aortic position) had been implanted in the pulmonary position with logic that the stentless valve offered haemodynamic benefits in the pulmonary position. After consultation with the Medical Director and Governance structure the MHRA were not notified as the valve was not designed for the pulmonary position. Further review identified that of the 5 cases 3 required early re-intervention because of valve failure. For those patients who have not suffered conduit failure they continue on 6 monthly screening with echo and intermittent MRI scan.

1 No elective implants of the RVOT Elan Conduit have been performed since 2011. 2 If in case of emergency the RVOT Elan Conduit was mandated the patient and the SACCS Cardiologist would be advised. It has been agreed that the patient would then be under monthly echo screening for the first 6 months and reassessment of the schedule for screening thereafter. 3 Patients who have not required intervention for conduit failure are on a 6 monthly schedule for echo screening with intermittent MRI screening. 4 All patients have been advised of our concerns about the RVOT Elan Conduit and that we have notified the MHRA about the conduit. Elan stentless: 1. No further Elan stentless valves have been implanted since 2012. 2. The SACCS group have agreed that prior to introduction of any further new valves we would agree a follow-up schedule. 3. All patients have been advised as to our concerns about the Elan valve and are aware that they are under close follow-up because of the Elan valve. The 2 patients who have not required intervention are on 6 monthly echo follow-up with intermittent MRI scanning.

MOD UNLIKE MED 28-Feb-2016

30

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.

1. working with Data Management Team to have validation of data. 2. working with service to ensure access to database, utilising clear guidelines for patients suitable for these drugs. 3. SACCS NP will have specific responsibility for the management of this database. 4. New data manager provided by SPVU supporting the data entry. SPVU team has implemented procedures to secure data entry to cover data manager absences.

MINOR POSS MED 30-Nov-2015

Safe & Sustainable Review

Update:April 2015; S & S Review now historical - NHS England Standards: a new review ongoing based on the congenital standards that aim to deliver life long congenital cardiac care. At time of update, we are challenged to meet the standards expected for an ACHD Surgical centreWhilst the standards do not mandate care within NHS Scotland, SACCS, the Golden Jubilee and NSD are strongly of the opinion that we should seek to maintain the highest standards including:* 24 out-of-hours cover.*ongoing audit.*Adequate transition.*Handheld patient records.*Access to dental surgery

1. The Golden Jubilee and NSD have supported the clinical strategy designed by the SACCS Team in 2012. 2. Ongoing work is required to implement the strategy.3. standardisation of letter format now demonstrates a written care plan for each of the patients4. Potential for patient portal now being considered.

MOD POSS MED 30-Nov-2015

31

SACCS service demand vs capacity

1. At May 2015 there are around 350 patients who have waited beyond their target review date. 2. There is a single ACHD Consultant providing the clinical cover with support from a locum on a remote basis, with occasional on site duties. 3. The clinical demand for adult congenital cardiac care has not reduced and will continue to grow.

There has been significant progress with the refining the clinical need of those patients awaiting highly complex diagnostics and clinical review from the SACCS service. Those patients beyond their review date are being prioritised for focused echo and clinical review through extra clinic session provision with an anticipated clearance of the backlog by the end of 2015. The single Consultant is being supported by the locum and if there is unexpected absence there is an agreement in place across the Boards to ensure the service is support with short term clinical input. In August 2015 tow clinical fellows will join the service and they will greatly enhance the clinical input once fully settled into their roles. 3. Ongoing formal and informal actions for recruitment as well as working with deaneries for training development within NHS.

MOD POSS MED 30-Nov-2015

Clinical Cardiac Audit Database (CCAD)

All surgical and interventional cases are required to be submitted to NICOR for external validation of the case. This audit has an annual review process, the results of which are sent to the trust. There recommendations require review and implementation. There is not a clear process to achieve this review and implementation.

1. In the last 18 months significant improvements have occurred in terms of the updates to the consent form and introduction of stickers to capture key data points for the CCAD audit. Data capture is also improving. 2. A new data manager will be in post by late 2015, with the current temporary positron being successfully managed by the current post holder, who has begun to form excellent links with CCAD.

MINOR UNLIKE MED 30-Nov-2015

32

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.

The governance structure has been reviewed and in collaboration with Clinical Governance, a more contemporary and

reactive format has been developed. This has weekly meetings with the governance lead, governance departmental

rep, and a representative from the nursing team. They review ongoing governance issues and address issues in a

timely fashion. This work supports the weekly team debrief which is held after the MDT. We now hold SACCS clinical

governance meetings 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. 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.

The new Healthcare Associated Infection (HAI) Standards were published in February 2015.These standards supersede the NHSScotland Code of Practice for the Local Management of Hygiene and Healthcare Associated Infection and all previous standards. The 2015 HAI standards are aligned to the National Infection Prevention and Control Manual (2103), and both documents underpin the Healthcare Environment Inspection (HEI) tool.

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.

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.

Influenza

On19th March 2015 within National Services Division (NSD) three patients were isolated with Influenza A. A Problem Assessment Group was convened and implemented control measures, which included closing the unit to new

33

admissions, screening of all patients within the unit, limiting visiting access and enhanced cleaning twice daily for horizontal surfaces / common touch points. No further patients were identified and NSD reopened 23/03/15.

Scottish Patient Safety Programme (SPSP) within NSD Ward

Various improvement and safety bundles are completed by nursing staff and consultant cardiologists. These bundle 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. Going forward we are aiming to introduce the CAUTI bundles and information, education and support to staff will be provided prior to this. Organisationally, there is a planned re-introduction of the SPSP leadership and steering groups which will aid in supporting staff, sharing experiences and discussing data in a more formalised manner.

B 3 d) Adverse Events There have been 7 incident reports under the SACCS service in 2014/15, 4 of which relate to the Staph epi issues

described above. The remaining three relate to administrative issues and all have been closed.

Areas for improvement

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

Areas of strength

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

• Improved clinical governance review on a weekly basis, addressing actions in real time.

• Much improved wait for MDT discussion

Good Practice

� Positive focus on ensuring patient and family involvement � Strong mechanism for escalating and monitoring incidents at the weekly meetings and through CG groups

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 2014/15 there was one complaint (with a second complaint unable to proceed due to lack of consent from the family member involved). The complaint was a complex issue including communication and preparation for intervention as well as various aspects of care pre and post operatively.

We have had feedback via various sources from internal and external routes, specifically praising the NSD Pod staff for their care and attention as well raising concerns with television reception – this can be frustrating for those long stay patients and this was promptly and successfully addressed.

We respond accordingly to compliments and make time to acknowledge and thank the patient/family.

34

B4 Timely (Access)

B4 a) Waiting / Response Times

The following tables and graphs describe waiting times for ‘first time’ SACCS cardiology clinical review in the outpatient

setting, within which there were two patients who waited longer than 9 weeks but seen well within 12 week guarantee.

Considerable work on identifying unavailability has led to a more accurate reflection in the numbers of patients who are

waiting to be seen in Clinic following referral for first time SACCS Assessment. In addition in the last year there has

been significant and sustained effort by Dr. Walker alongside her two ’Regional ACHD’ colleagues to review the repeat

list to ensure that patients are seen in the most clinically appropriate setting.

Repeat Review List

This work has led to a much more clinically appropriate list and although there are patients still waiting beyond the

identified ‘target review date’ at the time of writing this report, the actions in place suggest that this chronic backlog

concern will be remedied by the end of 2015. The work undertaken to achieve this highly significant position cannot be

underestimated together with its impact on improving both patient safety and timely equitable access.

Waiting list OutPatients SACCS Cardiology 2014/15

Figure 20

Wait distribution for Cardiology Congenital Outpatient Review Nov – March 2014/15

Figure 21

0

5

10

15

20

21-Nov-14 21-Dec-14 21-Jan-15 21-Feb-15 21-Mar-15

SACCS New OP waits Nov- March 2014/15

Available Patients Unavailable Patients

0

2

4

6

8

10

12

14

16

Wait distribution for new SACCS Cardiology OP

9 + Weeks

6 - 9 Weeks

3 - 6 Weeks

0 - 3 Weeks

35

Waiting list In Patients SACCS Cardiology 2014/15

Figure 22

Waiting list distribution for cardiology catheter based procedures Nov –March 14/15

Figure 23

0

2

4

6

8

10

12

14

16

21-Nov-14 21-Dec-14 21-Jan-15 21-Feb-15 21-Mar-15

SACCS Cath Lab procedure Waiting List Nov- March 14/15

Available Patients Unavailable Patients

0

5

10

15

20

21-Nov-14 21-Dec-14 21-Jan-15 21-Feb-15 21-Mar-15

SACCS Cath Procedure Wait

distibution 14/15

0 - 3 Weeks 3 - 6 Weeks 6 - 9 Weeks

36

Waiting list for SACCS Cardiac Surgery

Figure 24

Waiting list distribution for SACCS Cardiac Surgery

Figure 25

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

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

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.

0

5

10

15

20

25

21-Nov-14 21-Dec-14 21-Jan-15 21-Feb-15 21-Mar-15

SACCS Surgical Waiting List 14/15

Available Patients Unavailable Patients

0

2

4

6

8

10

12

14

21-Nov-14 21-Dec-14 21-Jan-15 21-Feb-15 21-Mar-15

SACCS Surgical IP waiting list distribution 14/15

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

37

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

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

until their holidays.

B4 b) Review of Clinical Pathway

The model of care outlined in the SACCS Clinical strategy places great emphasis upon the delivery of effective shared

care. Ensuring that patients have excellent local services with support from and access to the most expert level of care

when required necessitates the development of a clinical ACHD network.

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

needed by an individual

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

2. Moderately complex – shared care with SACCS

3. Severely complex – SACCS led care

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

caveats must be acknowledged:

• SACCS 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

• Grouping by anatomical complexity is a guide only –simple cardiac lesions may be associated with complex

medical issues, whilst some repaired complex lesions may present no major management concerns.

Movement between the groupings is inevitable.

• All patients aged 16 and over with congenital malformations of the heart and great vessels should be seen at

least once by an ACHD specialist either at the Golden Jubilee National Hospital or at a local ACHD clinic

depending upon complexity and geographical convenience.

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 would allow:

• specialist ACHD care delivered locally;

• gains in education and expertise empowering the local centre;

• improvement in quality of patient care locally;

• greater cohesion with the SACCS service; and

• facilitating local transition arrangements.

A key message of the strategy echoed by SCCN is to build on existing expertise within local units. The current ACHD

service in Scotland has well established local clinics in the following locations:

• Edinburgh Royal Infirmary

• Aberdeen Royal Infirmary

• Raigmore Hospital, Inverness

• Ninewells Hospital, Dundee

• Perth Royal Infirmary,

• Queen Margaret Hospital, Dunfermline

38

• Borders General Hospital, Melrose

Substantial ACHD expertise has been accrued over the years in these units and identified local cardiologists have

developed a significant interest in this area. The addition of SACCS support to these clinics will offer substantial

benefits. Other regions within Scotland will require a greater development of local services. A key role for the SCCN will

be to promote this development ensuring that all local units meet the nationally accepted Standards of Care

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 of the specialist service.

Additional aspects for the specialist service as the network develops will include the provision of emergency care and

advice, together with support of local services extending beyond the attendance at local clinics

Whilst successful implementation of the outreach network will improve communication and local care, it will also

increase the need for the provision of emergency specialist advice. SACCS needs to provide support to ACHD patients

who are acutely unwell and are often at their most critical need for specialist care. Many units still 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.

• Transfer of appropriate patients to GJNH for management

• Out of hours support.

Education will also be a key responsibility for the SACCS incorporating both an educational commitment to the network

and to the training of future cardiologists.

The focus will be on:

• ACHD training 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 smaller

focussed educational sessions in between

• formal training in ACHD as part of the cardiology Specialist Trainee core curriculum;

• 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 which SACCS can communicate important developments and clinical issues to

relevant clinicians. In turn, local units can raise issues of concern. Ultimately, improvement 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.

Other key communication tools include:

• an individualised written care management plan for each individual patient following specialist review;

• increased sharing of patient information through information technology solutions;

• correspondence shared with all local clinicians involved in patient care

• maintenance of the register of Scottish ACHD patients encouraging central collection of patient information

39

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 clinics from the National Service;

• a clinical Adult Congenital Heart Disease network supported by the Scottish Congenital Cardiac network

managed through a governance framework;

• a structured education and training programme for current and future cardiologists to secure the sustainability

of ACHD care; and

• an improved model of effective communication and clinical support to ensure the highest quality of clinical care

is provided.

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

Within the NWTCB Patient Focus and Public Involvement and Equality and Diversity activity comes under the Involving People Strategy as mentioned in previous reports and this work continues.

(i) Person Centred Committee 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 requirements of Patient Focus Public Involvement (PFPI). Our PCC is chaired by one of our Non Executive Board Members and is attended by representatives of our Executive Team, the Chair of our Quality Patient Public Group and members from the Partnership Forum. The Executive Lead is our Director of Human Resources.

(ii) Quality Patient Public Group. The Quality Patient Public Group (QPPG) was formed to provide a platform for patients and members of the public to become engaged in providing us with a different perspective on quality improvement activity and service development. In 2014/15 we have further developed the remit of the group to focus upon supporting the Board in learning from patient and visitor feedback.

(iii) Involving People Group We believe that in the planning and delivery of (their) care and services, and in activities which promote improved care and well being, people have a right to be involved irrespective of any of their defining characteristics and in a way that respects diversity and promotes equality respecting the wish of the individual. The central concept is simple – by involving people, everyone will benefit.

The Involving People Group was convened to coordinate the delivery of the GJNH Involving People Strategy and associated action plans. In the broadest terms the remit of the group is to provide coordination and leadership 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.

(iv) Equalities Group What we do or deliver in our roles within the NWTC is important, but the way we behave is equally important to our patients, customers, visitors and colleagues. Weknow this from feedback we get from patients and customers, 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 to deliver the highest quality of care and service across the organisation. These values are closely linked to our responsibilities around Equality.

Our values are:

40

Valuing dignity and respect;

A ‘can do’ attitude;

Leading commitment to quality;

Understanding our responsibilities; and

Effectively working together

Our Equalities Group’s aim is to embed equalities across our organisation. Our Equalities Group is comprised of senior managers, Staff Side representatives, the Leads for each protected characteristic and our Diversity Champions.

The Executive Lead is our Director of Human Resources.

(v) Volunteers

A key element in how we deliver our Involving People Strategy is our volunteer service. We have had volunteers 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 or contributing to policy reviews.

In 2014, our volunteers provided just under 600 sessions, contributing over 1,500 hours of support to patient focussed services.

Our Volunteer Forum, which meets quarterly and is chaired by one of our Non-Executive Directors, acts as a consultative 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;

o The appointment of a new Volunteer Services Manager.

o We held our annual volunteer day in May 2015. We invite all volunteers and also people who have expressed

an interest in becoming volunteers. The event was attended by our Chair and the Non-Executive Director

responsible for Chairing our Volunteer Forum.

o We have also established a Young Person’s Volunteer Group which is assisting the Board to listen to the

issues facing younger patients & carers when engaging with healthcare, and is also creating new links with

the local community.

o The Volunteer Forum has created an Annual Action Plan which is being tracked and supported within our

Clinical Governance department.

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, so that action can be put in place to assure greater satisfaction with the quality of care given and received.

The programme has embedded into all the areas of the hospital, and within the NSD pod has highlighted areas of focus such as improving the door entry system to reduce unnecessary noise and disturbance for 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 discuss areas of interaction or practice that does not seem to be in line with person centred care.

The incorporation of this through all nursing units in 2014/15 has;

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

41

� Gathered information which would inform action to enhance the experience of patients/service users. � Clarified and strengthened the accountability processes regarding quality of care from ‘bedside to boardroom’.

Regular assessment of the Person Centred Quality indicators continues and is now imbedded as part of the nurses role within the unit.

B5 b) User Surveys

We ensure that each patient/carer/ relative is offered an opportunity to feedback on their experience via the hospital

wide ‘SpeakEasy’ process and, looking to the future, GJ is robustly embracing the individual focused feedback from

patients and relatives with the ‘Emotional Touchpoints’ process which gives highly specific feedback on the impact of

nursing care as described above.

B6 Equitable B6 a) Fair for all: Equality & Diversity We as a Unit strive to deliver a service that embraces all aspects of Equality & Diversity which is a core component to the delivery of high quality care.

The Learning Disabilities Standards group is well embedded within the hospital and this group has provided work towards meeting the action plan around QIS LD standards for Vulnerable People. This group has had active representation from Cath Lab staff regarding the congenial patients and has produced information for staff in the cath lab/ CDU regarding congenital patients with LD.

B6 b) Geographical access

Throughout 2014/15 there has been a considerable, 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 non National. The ‘non national’ ACHD clinic review in the West of Scotland is well embedded and throughout 2015/16 this service will migrate 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 congenital cardiac management will be evident in data for 2015/16 onwards, which will go some way to address the geographical variation in the access to SACCS care.

Section C: Looking Ahead/Expected Change/Developments

The major developments during the current year have been the establishment of the Scottish Congenital Cardiac Network together with the expansion of outreach support to all but one hospital in the Northern, and South East and Tayside regions. This has facilitated, for the first time in Scotland, the wide acceptance of a shared model of care in which patients can access high quality local services whilst maintaining access to the specialist service when required. A further development that has had a major impact on the workload of SACCS has been the development of a regional ACHD service that has taken the responsibility of providing local ACHD care to patients living in the West of Scotland away from SACCS. This has allowed the specialist team to concentrate on delivering the highly specialist aspects of care and improving access to the service from other regions

Despite these achievements, major challenges face the service for the next year:

o Demand outstripping current capacity in all specialist testing and consultant assessment. This has

become a critical concern following the departure of Dr H Walker in April 2015 and maintaining

activity will be a major challenge for the future

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

42

o Assisting in the development of the West of Scotland Service as it leaves the Golden Jubilee National

Hospital together with Outreach support to the new clinic structure

o Helping to address concerns with regard to emergency specialist advice, Standards for ACHD care,

IT solutions and education

o Further development of the cardiac obstetric service to establish regular MDT meetings and a

National Network of Cardiac Obstetric care providers

The expansion in the nursing support for the service has been a major achievement in the last couple of years and

continued development is required to promote nurse led care wherever possible. This is of particular importance

given the reduced consultant resource:

o The development and delivery of a model of nurse led transition based at Yorkhill with the aim of

replicating the model in other areas allowing local transition where appropriate

o The further development of a nurse led role within the cardiac obstetric service

o Development of an ACHD nursing network to parallel the medical network improving access to

specialist nurse support throughout Scotland

Section D: Summary of Highlights (Celebration and Risk)

The year 2014/2015 has been a time of consolidating links between local and national ACHD services with the adoption of the shared care model. The foundation has been laid to take major strides forward in the management of patients with ACHD through the development of Standards of ACHD care and further develop the expanding clinical network of care providers. Patient involvement is paramount in all stages of the process.

Other highlights from the year include the development of the nursing roles within the specialist service assisting in maintaining the continuous development of high quality care. Further expansion in nursing roles has accompanied the recognition of the need for nurse led components of the service. The establishment of formal support from the specialist service to local ACHD services never before linked to SACCS has been an exciting and rewarding development during the year.

The 3rd Scottish Adult Congenital Cardiac Conference was as successful as the first two events and represents the major educational event for the clinical network. It is hoped this conference with become an annual event for the future helping to maintain links and educational support throughout Scotland.

Whilst the recent developments will allow major improvements in patient care, the major challenge facing 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 adoption of the shared care model.