Annual Report 2014-15

NORTH OF SCOTLAND PLANNING GROUP

NoSPG/Child Health/NoSPGHANN/2014-15 Annual Report

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CONTENTS

1. Introduction

2

2. Background and Network Governance 2

3. Services Updates 3.1 Staffing 3.2 Work Plan 3.3 Psychology 3.4 Education & Training

3 3 4 5

4. Developments/Events 4.1 New Highland Gastroenterology and Hepatology

Specialist Nurse 4.2 Family Day for Inflammatory Bowel Disease patients 4.3 New RACH Contact Service for parents 4.4 Enteral Feeding Training Initiative 4.5 RACH Feeding Clinic 4.6 Patient & Family Experiences

6 6 7 7 7 8

5. Research & Audit 5.1 New IBD Standards 5.2 UK IBD Audit

10 10

6. Key Challenges

11

7. Looking Ahead

12

8. Network Social Event 12

Appendices Appendix 1 – Staff List Appendix 2 – 2014-2015 Work Plan

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1. Introduction Welcome to the fourth annual report from the North of Scotland Paediatric Gastroenterology, Hepatology and Nutrition Network’s (NOSPGHANN). This year’s report is a compact version from previous years’ reports which can be accessed on the Internet at: http://www.nospg.nhsscotland.com/index.php/child-health-camhs/nospghann. Our main aim is patient safety and putting children, young people and families at the heart of our work. We have teams of dedicated, conscientious network staff that collaborate across Health Board boundaries on a daily basis to ensure patients receive the best quality care as close to their homes as is safe and appropriate to deliver. 2014-15 was a challenging year however we continue to be proud of the timely care being delivered despite increasing service pressures in challenging economic times. The network is accountable to the North of Scotland Planning Group. Dr Mike Bisset continued as the network Clinical Lead and Carolyn Duncan as the Network Manager during the year. Clinicians support children and young people with problems of the gastrointestinal tract, the liver and complex nutritional issues across 5 North of Scotland Health Boards. Many of these children have complex health issues and rely on network clinicians to support them. Multi-disciplinary teams are based in Royal Aberdeen Children’s Hospital, Tayside Children’s Hospital, Dundee and Raigmore Hospital, Inverness.

2. Background and Network Governance

Network multi-disciplinary staff continue to build on previous years’ successes and in everything we do, we aim to make a difference to patients’ and families’ lives by making improvements to the way we deliver care. We aim to drive up standards and ensure we provide consistency of care across the North of Scotland whilst working in partnership with patients and families to enable them to better manage their conditions. We work in a collaborative environment across health board boundaries and are proud of the excellent team working, communication and relationships that have been built up across the region over the past 11 years. We aim to ensure provision of a highly trained workforce and encourage staff training and education. Professional support is provided daily through formal and informal educational opportunities, case discussions and cross boundary working Due to numbers of chronically ill gastro & hepatology patients continuing to rise year on year, many with IBD are now on biologics therapies which takes up a large amount of professionals’ time. There is an increasing need for endoscopy procedures, which are carried out in Aberdeen, Dundee and Inverness operating theatres. There is now a need to hold an additional theatre list per month in Ninewells and where capacity allows, additional theatres sessions have been able to be undertaken by Consultant staff so that children do not have to travel out with their home Board. Strong links and collaboration with paediatric surgeon colleagues continues across the region meaning they can often carry out endoscopy or surgical procedures for network patients in Inverness and Shetland if urgently required. Endoscopy figures for procedures undertaken in 2014 are: Aberdeen – 181 (an increase of 19%) Dundee – 170 (an increase of 132%)

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3. Services Updates 3.1 Staffing The network was delighted to welcome 2 new members to the team during the year. Mhorag Robertson, Specialist Nurse, joined the Raigmore gastro team part-time in the

summer. Her appointment will ensure continued dedicated specialist nursing support for Highland patients with a GI or hepatic condition.

Siobhain McIntosh, Clinical Associate in Psychology, also joined the Ninewells gastro

team. Following successful negotiations with the CAMHS service with regards the dedicated National Delivery Plan funding, this has meant that for the first time there is dedicated psychology input to network clinics in Dundee, as well as a valued, dedicated point of contact for medical and nursing staff.

There have however been a number of staffing challenges during the year with a

number of maternity leaves and resignations which have unfortunately presented gaps in psychology, nursing and AHP services. Partial temporary cover has been provided by teams in order to support clinics when practically possible.

3.2 Work Plan

Work continues on the objectives of our progressive work plan, please see Appendix 2. Work was undertaken within the network to:

Update the Steering Group Terms of Reference and to produce a network Mission Statement, bearing in mind the document that had been written at NoSPG i.e. a copy of the North of Scotland Framework for Tertiary Paediatric Clinics is now also attached.

Review the network IBD pathway for GPs and national specialty specific protocols. Write a referrals advice document for GPs and general paediatricians to be posted

electronically.

Develop multi-disciplinary Journal Club learning sessions by VC. Participate in the UK IBD audit and other audits.

In addition a VC guide for parents and families attending a review clinic appointment

by video conference has been drafted for network patients. It is hoped that this will be replicated for use by other networks across the North. Parents and families may not have attended a video-conference before and will most probably not have seen a doctor for a clinic appointment at a remote location by using this technology. It was felt useful to develop this guideline to try to help the families better understand how this works in practice. If parents are willing to attend a review appointment by VC, far from the main centre (e.g. Caithness, Orkney, Shetland), they have the potential to be seen earlier and have the added benefit of not having to travel long distances. Due to staffing and service pressures, it was not possible to develop a parent questionnaire to seek views on the current service with a view to making further future service improvements. In view of the national feedback from the UK IBD Audit, it will be useful that this service questionnaire is worked on in 2015/16. The network will endeavour to include reference to the recommendations from the IBD audit within the general questionnaire.

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3.3 Psychology – service descriptions

Siobhain McIntosh, Clinical Associate I work as a Clinical Associate in Applied Psychology (CAAP) in Tayside; the CAAP role is a fairly new addition to the psychological workforce of Scotland, having been in existence since 2005 when a need was identified by the Scottish Government and NHS Education for Scotland (NES). The CAAP role has been developed to work with children and young people experiencing common mental health conditions from an early intervention/early years approach. My role is new to the Tayside Paediatric Gastroenterology service, which I joined in August 2014. I have a full day committed to providing psychological input to the team (with my working week being segmented across other specialist paediatric teams at Ninewells Hospital). The bulk of my post is taken up through 1:1 direct clinical work with families referred for assessment. Typical referral reasons include chronic pain, adjustment, anxiety and difficulties with adherence to medical regimen. Clinical work involves a psychological assessment (generally consisting of 3–4 one hour sessions) with this feeding into a psychological formulation. On agreement with the young person, it is jointly decided what aspects of this formulation will be appropriate to share with their paediatric team. Cases do not always necessarily require intervention and, at times, assessment and sharing formulations with the team can be an effective 'intervention' in themselves in terms of a shared understanding of the young person's experiences. A new and exciting model that is increasingly being used with success in the field of Paediatric Psychology is Acceptance and Commitment Therapy (ACT). I was fortunate enough to be able to attend a training course on ACT for paediatrics through the University of Edinburgh and NES which has had direct impact on utilising this technique clinically with families at Ninewells. Aside from direct clinical work, the remainder of my clinical time consists of liaison with the Paediatric Gastroenterology team, often on cases where I am not clinically involved. There are a number of cases that benefit from having psychological input for medical clinics and routine discussions with the team but that do not necessarily require more intensive clinical involvement at the time. Part of this liaison role is to act as a link between the team and the Tayside Child and Adolescent Mental Health Service (CAMHS). Dr Anna Clancy, Clinical Psychologist

I am the clinical psychologist who works as part of the multi-disciplinary gastroenterology team in Royal Aberdeen Children’s Hospital to enable the children and young people with gastrointestinal (GI) conditions and their families to have a good quality of life (QoL). Within this, my specific work revolves around holistically helping patients who are experiencing changes in their emotional well-being and behaviour due to their physical health needs. I meet patients in clinic, on the ward or as outpatients. I am available to meet with the family at any point during their patient journey; ideally it is helpful to meet all newly diagnosed patients. I also hope to work alongside my colleagues in preparing young people for the transition to the adult service and plan to become involved in collecting data on QoL in order to help to improve the team’s care pathway.

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Patient work My assessment enables me to understand the child and family’s goals and tailor an intervention. The aim of all therapeutic interventions is to promote emotional wellbeing and strengthen resilience. The patients are often anxious, worried, unhappy, confused or angry and show this in a variety of ways, for example, struggling to take their medication or not attending school. Indeed, common referral themes include thinking about adjustment issues surrounding the diagnosis such as exploring patients’ questions about their GI condition; enabling them to feel more comfortable around procedures and treatments, for example, blood tests; helping them manage the impact of their physical health on their everyday lives including how to cope with it during school and engage in as meaningful a life as possible. I also work directly with parents and carers; this often involves thinking with them about their own emotional well-being, understanding their perspective and seeing if they need any further support. Case example I worked with a 13 year old patient who had been recently diagnosed with Crohn’s disease. The referrer was concerned about the patient’s absences from school, poor management of medication and general lethargy. The patient’s underlying areas of concern related to their difficulty emotionally adjusting to the diagnosis and fears about what it meant for their life in the short and long term. We made links between behaviour, emotional experiences and physical health. In brief, we identified the negative cycles of avoidance: avoiding anything related to the diagnosis and their social isolation. In terms of the diagnosis, we discussed their experience of Crohn’s including further understanding the significant emotional impact on the patient’s everyday life. We used psychological and behavioural techniques to enable them to lead a fulfilling everyday life. This psychological change meant that the patient could move on to live their life as meaningfully as possible. Over time, the patient grew in resilience, energy and emotional well-being, which was shown by adherence to medication but also by engaging with a gradual reintegration to the school timetable.

3.4 Education and Training Network staff were supported to take part in teaching sessions and educational

opportunities during the year. There are a number of regional, national and European events available, e.g. weekly MDT in RACH, weekly MDT case discussions in Ninewells and monthly lunchtime case discussions in Inverness. There are also a number of annual meetings e.g. SSPGHAN (Scottish Society for Paediatric Gastroenterology, Hepatology & Nutrition), BSPGHAN (British) and the European equivalent, ESPGHAN.

Journal Club – topics such as peri-anal Crohn’s disease, new IBD standards and IBD audit feedback were presented by VC across the network. Staff also had the opportunity to link in by VC to the national Scottish Society of Gastroenterology, Hepatology & Nutrition journal club presentations on a regular basis. There is a further programme of dates organised for the coming year.

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4. Developments 4.1 New Highland Gastroenterology and Hepatology Specialist Nurse

Mhorag Robertson took up her part-time post in August 2014. A visit to RACH in September and attendance at the SSPGHAN (Scottish Society of Paediatric Gastroenterology, Hepatology & Nutrition) conference in Stirling in November helped to create a good working relationship with the different teams in the three main centres as well as meeting other Scottish colleagues. The networking opportunity also provided Mhorag with the ability to develop a support network for her in her role in Highland. One of the immediate actions when starting in the role was to implement a telephone support service for all IBD and hepatology patients. This is used on average by 2-3 patients at any one time. It is particularly useful for newly diagnosed patients and those suffering a period of relapse. She also joins the medical and dietetic team in joint out-patient clinics between tertiary and secondary care clinicians. Crohn’s and Colitis UK intend to hold a family day in Highland in September 2015. Mhorag will be fully involved in the day which will be a useful and interesting day for patients and families. Her future plans include setting up a transition clinic, support with pain management and building a useful database for research and development.

Mhorag Robertson, Specialist Nurse

4.2 Family Day for Inflammatory Bowel Disease patients

A family day was held at Transition Extreme, Aberdeen in May 2014 which was very successful (supported by Crohn’s and Colitis UK and The Archie Foundation). 54 people had attended, which included 16 families from Grampian, Tayside and Highland. The children and young people were able to participate in activities such as the climbing wall, inline skating, riding BMX bikes and high ropes. The day also consisted of a number of information sessions and discussions, with one of the highlights being a motivational talk to parents from a local 18 year old. An online survey had been carried out to collect feedback, with 97% of responses describing the day as “excellent” and nearly all attendees would like the event to be repeated. There will be further discussion around when and where the next event should be held.

Carol Cameron, Specialist Nurse 4.3 New RACH Contact Service for parents

Specialist Nurses Carol Cameron and Brenda Smart support children with enteral feeding tubes and many parents call them if they have concerns about their child’s tube or tube site. The nurses used to then arrange to review the child in the hospital. Over 100 children across Grampian have enteral tubes and this was taking increasing time and was also a burden on families having to travel to RACH. In October 2014 Carol and Brenda set up a generic gastro specialist nurse email address and parents can now email photos of their tube concerns. This allows the nurses to advise and provide appropriate management of the problem which can include giving clinical advice or prescribing topical treatments or suitable dressings. Tracy, a very experienced foster mum, has used this service numerous times as she has cared for a number of children with complex health needs who have enteral tubes. She describes it as ‘ideal for her to be able to email a photo to enable us to see the

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tube site’ and it saves her having to travel to the hospital which is better for her and her children. Tracy said that this allows the issue and her concerns to be addressed quickly. She describes it as an excellent service.

The service has been extended to enable all patients with stomas to also email photos and has been very successful. Professionals including GPs, Health Visitors and School Nurses also now use this generic email for clinical information on how to manage patients’ enteral tubes. Over 40 parents have accessed this service and this has made a significant improvement to patient care.

Carol Cameron & Brenda Smart 4.4 Enteral Feeding Training Initiative

Brenda Smart has developed monthly enteral training sessions at RACH which have been running since September 2014. A total of 70 professionals including nurses, dietetic students, teachers, nursery nurses, carers and social support workers have attended from a range of services including schools, nurseries and respite centres. Brenda together with dietetic and pharmacy colleagues present an interesting morning of talks including why children require enteral tubes, different types of tubes, care with administering medicines and the wide variety of feeds available. They are interactive sessions which also include practical demonstrations on how to administer bolus and pump feeds. There has been excellent feedback from attendees which has shown that all participants had their learning requirements met. Comments included ‘excellent speakers’, ‘really enjoyed the session, feel more confident now in giving feeds with enteral tubes’ and ‘learnt so much’. Participants also highlighted that it would be beneficial to have mannequins for enteral tubes and Brenda plans to purchase these to further improve the sessions.

Brenda Smart, Specialist Nurse 4.5 RACH Feeding Clinic

The multi-disciplinary feeding clinic started in February 2014 and continued on a quarterly basis during the year. Medical, dietetic, speech & language and occupational therapy staff deliver the clinic as a forum to discuss patients with complex feeding needs. Feedback from parents on the clinic has been very positive. One mother has commented that the clinic appointments have been useful and it is good to be able to see all professionals at the one time. She feels that the professionals understand that it is not the fact that her child doesn’t eat or that she is tube fed, but it is how practically she is able to feed her child. Mum felt that all of the staff involved in her child’s care know her and ‘where the family are coming from’. Her main comment was ‘You can’t stop that clinic!’. She feels that the multi-disciplinary team is realistic and positive about her child’s condition and she feels well supported and more confident with regards the feeding aspects of her child’s care.

Hilary Rennie, Dietitian, RACH

A child in Orkney has been managed by their local team with VC support from the Aberdeen feeding clinic.

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The VC access to the feeding clinic has allowed local Orkney clinicians to be present for the consultation with the family, expert team in RACH and the local team, allowing open and immediate discussions in the multi-disciplinary setting. The family appreciates that they did not have to travel to Aberdeen for an appointment. The local team are supported and involved from the outset in any suggested changes to feeding management. This child is now fully orally fed and the tube feeding has been discontinued.

Caitriana McCallum, Dietitian, NHS Orkney 4.6 Patient & Family Experiences Our son Evan was diagnosed with Crohn's disease around June last year. Looking back,

he was probably unwell for a year prior to this. In October 2013 he started developing anal abscesses and after the third episode, Crohn's was first suggested. Over the next 3 months Evan had numerous investigations before a definitive diagnosis was able to be made. From our first point of contact, we have had fantastic care. Our whole family has felt supported. Evan is relatively young, but his condition has been very well explained to him from the outset. My husband and I have been impressed with the way things have been conducted, involving him in planning his care and treatment. His long term care has also been outlined well. Evan is beginning to realise this is a long term condition but at this point in time isn't worried about it! His long-term diet has been a topic of much discussion at home by Evan and because Clare (dietician) took the time to explain initially about what was 'good and bad', his diet has been fairly easy for him to adapt to - even having McDonald's only every 4-6 weeks as a treat and drinking Modulen every day. Medical staff have been great about explaining the condition and future treatment options. We can phone Sarah or Karen any time for advice or support. They are both fantastic at their jobs. Evan was really upset when he first started having to attend hospital, but with the care he has received, although he now doesn't exactly look forward to going, he is much happier because he realises 'the hospital' is making him better. He is reassured when he knows the staff, especially Karen and Sarah. Professionalism and caring attitudes are displayed by nursing and medical staff.

This is a service that Ninewells should be very proud of in our opinion. (Provided by Evan’s parents).

Timothy was diagnosed in 2011 with Crohn’s and was introduced to the Gastro team shortly after. Having access to this team of specialists has allowed him to come to terms with his disease whilst having excellent treatment. We have had support at all stages and our questions are answered as quickly as possible, face to face or over the phone. Access to the Specialist Nurses without having to go through a protracted process to flag up problems, have questions answered and get test results is something which cannot be underestimated. It cuts out the stress of having to wait for appointments and when there is a flare up, access to treatment is far quicker than having to go through the GP and the referral process or wait for the next appointment in the system. This makes such a difference to a young person’s life when waiting for treatment could mean long periods at a time away from school and friends.

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Timothy has had access to not only Consultants and Specialist Nurses but also Dietitians and Psychologist which has increased his understanding of his disease and has given him coping strategies he would not otherwise have had.

We cannot thank the whole team enough for their care and support and can only hope to have a similar experience in adults. (Provided by Timothy’s parent)

Karen McIntyre & Sarah Nicoll, Specialist Nurses

Fiona is a mum of two teenage daughters who have been both diagnosed with Crohn’s disease. Sarah was diagnosed in 2006 and moved to adult services after attending the nurse transition clinic in 2013. Unfortunately her sister Karen was then diagnosed and has also now recently left the paediatric service. Mum remembers a time before the Nurse Specialists were appointed and she has described this as terrifying with no contact between clinics and having no one to speak to about her concerns. She said it was difficult to speak to the doctors about her daughter and calls took a long time to be returned. She says there was a huge difference after the nurses were appointed and she felt that they instinctively knew when her daughters had not understood what the doctor had discussed. She explains how they were able to give information in an understandable form and felt that they were supported and guided through her daughters’ difficult journeys. Fiona describes the IBD team as an amazing bunch of people who have made a huge difference to their family’s life.

Nurse prescribing enhances patient care Living in Shetland with a daughter with ulcerative colitis was described by Eva as feeling quite isolated and while appreciating her GPs, she often felt that they were unable to provide the continuity or advice that she was looking for. The Gastroenterology Specialist Nurse is now an independent prescriber and this has enabled her to consult with patients and then be able to prescribe new medications, change current treatments and improve parents and patients’ knowledge of medications used. Eva has spoken to the nurse several times over the last few months as her daughter’s condition was relapsing. The nurse was able to review symptoms, interpret blood results and then prescribe medications to improve her condition. The nurse contacted the local GP and pharmacy to provide the local prescriptions and the changes were then appropriately reviewed. Eva describes how this has made such a difference to her daughter’s care as she feels very confident in the nurses’ ability to assess her condition and she is pleased that she has a named contact who she feels really knows their situation and makes life so much easier for their family. She also really appreciates being seen in Shetland by the Consultant Paediatric Gastroenterologist and in between can be seen by video consultation saving considerable time for their family.

Carol Cameron, Specialist Nurse

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5. Research & Audit 5.1 National IBD Standards

The IBD standards were revised in 2013 and the NoSPGHAN network reviewed these to ensure that the teams had achieved or working towards achieving these standards. The standards examine all area of care for children with IBD –

1. High Quality Clinical Care 2. Local Delivery of Care 3. Maintaining a Patient-Centred Service 4. Patient Education and Support 5. Data, Information, Technology and Audit 6. Evidence-Based Practice and Research

An action plan was developed to ensure all areas were addressed and this includes developing referral guidelines for GPs, protocol for biologics and transitional care and improving patient involvement in service delivery.

Carol Cameron, Specialist Nurse

5.2 National UK IBD Audit

Network staff worked hard to collect and submit data in the UK IBD audit during the year. The first round of the UK IBD audit took place in 2006 and examined in-patient care of with inflammatory bowel disease (IBD) at each participating site and the organisation and structure of IBD services. Paediatric services were included in round 2, and the safe use of biological therapies and inpatient experiences were added in round 3, which the network was involved in. The audit has helped to improve IBD services and to deliver higher quality care nationally. Progress of the audit has been supported by the development of the service standards for IBD patients and future rounds will continue to drive change. Very positive results and comparisons between sites nationally were reported for the network in September 2014’s Paediatric report on the efficacy, safety and appropriate use of biological therapies in patients with IBD and to capture the views of patients on their quality of life at intervals during their treatment. Results from Round 4 of the audit will be published in summer 2015.

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6. Key Challenges

There have been a number of ongoing challenges across the network during the year. Each of the services in Aberdeen, Dundee and Inverness has experienced increasing numbers of patients bringing greater pressures on the services. In addition, the lack of capacity in the general medical paediatric service in RACH has meant that increasing numbers of patients with a minor GI problem that would normally be seen by a general paediatrician are now being seen in GI clinics. The gastro service is unable to sustain the increased workload and changes in referral pathways and the ongoing inefficiencies with the patient booking system have not been helpful. Work is underway with local management to review the current vetting system for gastro and general medical patients to increase GI clinic capacity for the coming year. Due to an increase nationally in patients with Inflammatory Bowel Disease, with up to a 100% increase seen in each main centre over the last 5 years, around one third of Crohn’s patients are now on biologic therapies, which is very time-consuming for staff (these therapies have developed over the past 5 years). The inability of Boards to fill maternity leave posts particularly in the AHP and

Dietetics services due to budgetary constraints means there is often less timely access for chronically ill patients, which is not ideal. Temporary partial cover at clinics or within services is often provided on an ad hoc basis however delays in treatment are not an issue.

The network maintains a risk register which is reviewed at every steering group

meeting and when relevant we engage with Boards’ child health management staff to try to resolve these issues. Increasing lack of capacity due to increasing diagnoses in IBD and coeliac disease (increase approximately 40-50% for both conditions over the past 3 years) plays a key part in the capacity of each main centre’s ability to deliver a quality service.

A key highlight during the year was the engagement with the management team of

the CAMHS service in Tayside so that a Psychologist now attends GI clinics in Ninewells on a weekly basis (funding provided by the National Delivery Plan). Psychological therapy has proven extremely helpful to patients who have a chronic GI condition and means that by benefiting from early intervention, they are better able to manage their condition in the longer term.

A fit for purpose data collection system and data officer support remains as gaps for

our network (as well as other North of Scotland child health networks). It has been recognised for a number of years that there are clinical governance issues at times regarding access to patient information and the ability of Consultants to make clinical decisions on patients’ outwith their home Board. There is a review ongoing at the North of Scotland Planning Group together with e-Health Leads in the region to investigate the best means of collecting data in future by using existing systems such as Trakcare. In the meantime a draft activity data template has been written for the network and it is intended that information on such things as new diagnoses numbers, patients on biologic therapies, coeliac patients, enteral feeding, will be collected manually and stored electronically from April 2015.

Additional theatre time in Ninewells - It has been acknowledged for 2-3 years that additional theatre lists to carry out endoscopy timeously and negate the need for Tayside patients to travel to Aberdeen is needed. During the past year however, Ninewells theatre staff have been very accommodating in offering emergency lists

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where possible (2 afternoon lists per month undertaken routinely). This has resulted in a huge increase in patients being able to be seen locally. In the longer term, with the help of the Archie Foundation, provision for a second paediatric theatre is being planned.

There are ongoing gaps in clinical physiology services – some GI tests are not readily available in RACH or Ninewells due to the lack in capacity of adult physiologists and some patients therefore need to travel to Raigmore in order to have tests to aid their diagnosis, where an excellent service is provided. There is ongoing discussion as to how best to deliver these valuable tests for the benefit of network patients. In RACH it is hoped that the paediatric nurses will be trained to calibrate pH equipment and to set up capsule endoscopy equipment so that this can be available locally (with reporting of results from Inverness).

7. Looking Ahead

We have had an extremely busy year but remain well positioned to take the network forward positively. We will build on previous successes and excellent team collaborations across the 3 main centres to ensure provision of safe and sustainable services for our patients. We are proud of all our work undertaken in these challenging economic times and we will continue to drive service improvements as part of our routine business to make the patient journey as easy and as close to their home as possible. We wish to ensure the right knowledge and skills are available throughout the network to meet the specific needs of the patients and we will continue to make available to staff many learning and educational opportunities alongside the Scottish Society of Paediatric Gastroenterology, Hepatology & Nutrition. Next year will see a major change in Clinical Leadership of the network with the resignation of Dr Mike Bisset from his lead role, he will however remain an active member of the network. Dr Bisset has been successful in being appointed as the Medical Director of the North of Scotland Planning Group (2 year secondment from April 2015) and we wish him all the very best in his new role. Network staff would like to thank Dr Bisset for his excellent leadership, support, encouragement and dedication to network staff over the years. His vision and determination, as the founder member of the network over 11 years ago, to provide a first class tertiary gastroenterology service for patients and families across the North of Scotland has meant that we are in a much better position in being able to deliver and sustain this specialist service across the region.

8. Network Social Event – August 2014

We again met socially in the summer on a dry, but cool rural Aberdeenshire day, which was kindly hosted by Dr Mike Bisset and his wife Amanda. There were lots of fun activities for staff and their families. Things got very competitive amongst the male members of the group when it came to the football! A huge thanks goes to all staff who are actively involved in the network for their continued commitment, dedication, enthusiasm and hard work for their patients and families when delivering high quality, safe, patient-centred care across the North of Scotland.

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Network family fun day!

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Appendix 1 Gastroenterology, Hepatology & Nutrition network staff involved in delivery of NoSPGHANN – 2014/15

Network

Management

POST Comment

Dr Mike Bisset NoSPG Child Health Clinical Lead and Network Clinical Lead

Carolyn Duncan NoSPG Child Health Network Manager Also Network Manager for NoS

neurology and respiratory networks

ABERDEEN POST Comment Dr Mike Bisset Consultant Gastroenterologist Also working in Tayside & Highland

Dr Sabarinathan Loganathan

Consultant Paediatric Gastroenterologist Also working in Tayside & Shetland

Dr Shyla Kishore Consultant Paediatrician with a Special

Interest

Took up post in April 2014

Also working in Elgin

Ann Morrice Medical Secretary Part-time

Stephanie Ramsay Medical Secretary Part-time

Carol Cameron PGHN Specialist Nurse Also working in Shetland specialty clinic and Metabolic Specialist Nurse

Brenda Smart PGHN Specialist Nurse Commenced in post January 2014

Kathleen Ross Head of Paediatric Dietetics NDP provided 0.3 dietetic network

support

Hilary Rennie Dietitian

Hazel Weir Dietitian

Dr Anna Clancy Psychologist

June Fair Speech & Language Therapy

Jo Thomas Senior Occupational Therapist

Angie McCallum Dietetic Assistant

Martina Freeman Pharmacist

Physiological Technician Services ‘purchased’ from ARI/Raigmore

DUNDEE

Dr Dagmar Kastner Consultant Paediatrician with a Special

Interest

Dr Buddhi Gunaratne Consultant Paediatrician with a Special

Interest

1 session – Perth clinic

Gillian Cormie Medical Secretary shared NDP funding

Joanna Mulreany Medical Secretary “

Karen McIntyre PGHN Specialist Nurse

Sarah Nicoll PGHN Specialist Nurse

Clare McLeish Senior Dietitian

Siobhain McIntosh

Psychologist Commenced August 2014

Dr Paul Fettes Consultant Anaesthetist 2 sessions to support endoscopy theatre sessions

INVERNESS

Dr David Goudie Consultant Paediatrician with a Special

Interest

Agnes MacIntyre Medical Secretary

Lis Jackson Medical Secretary

Mhorag Robertson PGHN Specialist Nurse Commenced August 2014

Michelle Nimmons Dietitian On maternity leave from April 2014

Dr Tracy McGlynn Psychologist On maternity leave from March 2014

SHETLAND

Dr Susan Bowie GP with a Special Interest Based at Hillswick Health Centre

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Appendix 2

Objectives Outcome Tasks Timescales Lead

Professionals

Progress at March

2015

Update network

structure documents (RAG: Amber)

Efficient, Effective,

Equitable

Produce network Terms of

Reference, network Mission Statement and Risk Register

Update previous steering group Terms of

Reference (ToR).

Produce network Mission Statement

Risk Register updated at each steering

group meeting

2014-15 C Duncan

W M Bisset

New Terms of

Reference/Mission Statement/risk register

documents agreed in

December 2014. NoSPG Framework for Tertiary

Paediatric Services to be attached to ToR.

Continue to map,

develop and agree care pathways

(RAG:Amber)

Patient-Centred,

Efficient, Safe

Develop regional care

pathways to ensure consistency across the

network, establishing links to other regional networks

Agree on existing care pathways and

identify any gaps

Link with national/regional groups to

inform existing or new protocols, standards and referral pathways

Discuss use of national/regional care

pathways in NoSPGHANN with WoSPGHANN/SEAT colleagues

2015-16 W M Bisset

D Goudie D Kastner

S Kishore S Loganathan

IBD pathway for GPs and

General Paediatricians adopted as a network

pathway. Identification of local/national protocols.

Develop network web pages for professionals

and families

(RAG:Amber)

Patient-centred, safe

Increase awareness of the network for all stakeholders

and enhance families'

knowledge of service and of disease information

Develop a parent questionnaire in

conjunction with nursing staff to seek views of current service and development

possibilities.

Further develop network web pages to

include protocols/guidelines in future

2015-16 C Duncan K McIntyre

S Nicoll

K Ross

Document drafted on referrals information and

pathways for posting

electronically for primary and secondary care.

Parent questionnaire to be developed.

Paediatric Gastroenterology, Hepatology & Nutrition Network (NOSPGHANN) Work Plan 2014-16

NoSPG/Child Health/NoSPGHANN/2014-15 Annual Report

Page 16

Objectives Outcome Tasks Timescales Lead Professionals

Progress at March 2015

Enhance network

education framework

(RAG:Amber)

Safe, patient-

centred, equitable

Ensure appropriate skill mix of

professionals and maintain and develop professional expertise

locally and across the network

Describe educational opportunities –

local/regional/national and distribute to

network and Health Board education administrators

Deliver multi-disciplinary network learning

sessions by VC (up to 6 per year) Organise annual network study day

2015-16 W M Bisset

C Duncan K Ross

2015 network/national

educational opportunities list distributed

Continue discussions on

implementation of an

appropriate paediatric clinical audit system

(RAG:Amber)

Patient-centred, safe, equitable

Improve clinical data collection

to have ability to collect patient

demographic and disease information to facilitate audit

and to enhance patient care

Continue discussions with NoSPG with

need for a data collection system for NoS

networks

Collaborate with WoS and SEAT colleagues

to establish whether possible to identify common disease/procedure codes for

gastro networks across Scotland

2014/15 W M Bisset

C Duncan

Discussions ongoing with

regards a NoS fit for

purpose data/IT system. NoSPG eHealth Leads

group to discuss clinicians’ access to NoS Health

Boards clinical systems.

Audit clinical care and

research

(RAG:Amber)

Efficient, safe

Identify projects suitable to

carry out audit of children’s care and review parents’ and

carers’ experiences of service provided

Participation in and collation of UK IBD and

audit data

Carry out Eosinophilic oesophagitis audit

Audit patient/family experience of service

2014/15 S Loganathan

C Cameron S Nicoll

S Kishore

Collaborative work carried

out by staff in 3 main centres to collate/submit

IBD audit data. Data activity template being

developed.

Red/Amber/Green status

red - not on target/little or no progress

amber - satisfactory, significant progress but further work required

green – the network has been successful in achieving the objective

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