NATIONAL MANAGED CLINICAL NETWORK For HOME PARENTERAL NUTRITION

Transcription

1 NATIONAL MANAED CLINICAL NETWORK For HOME PARENTERAL NUTRITION ANNUAL REPORT 2010/11

2 Contents Contents...1 Executive summary...2 Introduction...5 Plans for the year ahead...7 Detailed description of progress over the reporting period...9 Appendix 1: Network membership...20

3 Executive summary The Scottish Home Parenteral Nutrition (HPN) Managed Clinical Network was launched in November It aims to ensure equity of access for patients in Scotland who require this specialised treatment for intestinal failure. The MCN was subject to Strategic Review by National Services Division throughout 2010/11. The MCN continues to support all patients on HPN in Scotland, and remains one of only a handful of truly inclusive, countrywide, and equitable HPN services in the world. This gives it a broad perspective on the needs of patients and their carers, and the challenges they face carrying out a demanding modality of treatment, in a wide variety of locations. The HPN Quality of Life questionnaire is unique in being based on patients perception of their quality of life and has now been embedded in the Network s Quality Assurance Framework. It has been adopted by 15 centres around the world. The National Contract for HPN services arose out of work conducted by the network with National Procurement, and has been successfully renegotiated, having saved NHS Scotland over 1 million over the first 3 years. The Network remains central to the monitoring of contractor, Bupa Healthcare against the key performance indicators, and continues to raise patients concerns and suggestions with the supplier. The MCN for HPN cooperated fully with the NSD review and has produced a work plan to address the key issues. The membership remains united, enthusiastic and committed to the core principles that have underpinned the HPN network since its inception. Introduction HPN is a method of intravenous delivery of fluids and nutrients directly into a central vein. Patients should be supervised in units where there is experience in the management of HPN. The patient or carer requires to be taught to manage the sterile routine, which enables the transfer of care from hospital to the home. HPN is used to treat patients with intestinal failure, which is defined as inadequate intestinal function for absorption of fluid, electrolyte and nutrient requirements. The commonest cause of patients requiring HPN is the development of short bowel syndrome from diseases such as Crohn's disease, mesenteric vascular disease and surgical complications. Some patients may require HPN for many years but some may only require it for a short period of time awaiting corrective surgery, until there is intestinal adaptation or in the terminal stages of malignancy. Description of the Network The national MCN for HPN aims to improve the quality of care to patients who require this treatment for chronic intestinal failure. A service agreement exists between NSD and NHS Tayside to host the MCN. Dr Janet Baxter is the MCN manager and Dr. Alastair McKinlay, Consultant astroenterologist; Aberdeen Royal Infirmary is the Lead Clinician. The post of Lead Clinician was due for reappointment in April this year; Dr McKinlay was reappointed for a further year until the MCN has been through the National Services Division Strategic Review process. The MCN has complied with the recommendations of the review despite several constraints. The MCN has had limited access to admin staff over the past few years. The HPN MCN had 18 hours of Band 2 admin support. This was increased to 22 hours, but shared with Complex Burn

4 Injury when management of that MCN was subsumed. The post holder was absent for a year (sickness and maternity leave). Following a return of a few months, the post holder was granted a one year career break. The post of Data Facilitator was created in 2008, but when that post holder resigned after approximately six months, no reappointment was made. The HPN MCN currently shares a Band 4 administrator with four other MCNs, due to recruitment issues in NHS Tayside. In the minute of NSD meeting (March 2009) with Drs Baxter and McKinlay, it was acknowledged that vacancies may prove an issue and that these would be documented as risks to HPN delivering against the work plan. Home Parenteral Nutrition Managed Clinical Network: Annual report 4

5 Aims These key network aims are defined in the service agreement. To ensure patients are managed according to evidence-based, nationally agreed procedures and protocols To enable provision of HPN in as cost effective manner as possible To develop and maintain a register of patients and families To allow audit of practice and outcomes and hence provide a basis for improving the quality of care To promote equity of access and service delivery at the most appropriate point of contact (supported by agreed clinical standards and transparent service model) List of clinicians/sites with expertise in the management of patients requiring HPN. NHS Board Ayrshire & Arran Fife rampian reater lasgow & Clyde Highland NHS Lothian NHS Tayside Arrangements are made to transfer and support shared care or hub and spokes arrangements with other boards Dr Matty Lough, Consultant Biochemist, Crosshouse Hospital, Kilmarnock Mr Satheesh Yalamarthi, Consultant Surgeon, Queen Margaret Hospital, Dunfermline. Dr Alastair McKinlay, Consultant astroenterologist, Dr Bernie Croall, Consultant Biochemist, Dr Bill Simpson, Consultant Biochemist, Aberdeen Royal Infirmary, Dr Mike Bissett, Consultant Paediatric astroenterologist, Aberdeen Royal Hospital for Sick Children. Dr Ruth McKee, Consutlant Colorectal Surgeon, Dr Anne Criuckshank, Consultant Biochemist, Southern eneral Hospital, lasgow, Dr Marek Dominicjek artnavel eneral Hospital, Dr Diana Flynn, Dr Andrew Barclay, Yorkhill Hospital Dr Hazel Younger, Raigmore Hospital, Inverness Dr Alan Shand, Consultant astroenterologist, Western eneral Hospital, Edinburgh, Dr David Wilson, Consultant astroenterologist, Royal Hospital for Sick Children Dr Nigel Reynolds, Dr John Todd, Dr Dagmar Kastner (paediatric) Consultant astroenterologists, Ninewells Hospital Home Parenteral Nutrition Managed Clinical Network: Annual report 5

6 MCN Activity Very few HPN communities have been able to publish long term survival data. This has been made possible by the collaboration of the HPN MCN centres providing data that has been amalgamated over seven years in both the adult and paediatric population. This is important data in the field of clinical nutrition to enable planning for referral for transplant and to define HPN services. The importance of the academic outputs of the MCN should be recognised. The manager and clinicians (both adult and paediatric) have contributed to a body of academic peer reviewed presentations and publications throughout the ten years of its existence. The Strategic review Report recognised the important contribution that the HPN MCN has made to the national and international field of clinical nutrition. These achievements should not be underestimated as they convey educational benefit to the MCN members, thereby inevitably impacting on clinical practice and improved patient management. Several of the HPN MCN members are active in the global arena of clinical nutrition. Clinical Nutrition is not a recognised clinical speciality most clinicians do not have written into their job plan interest is developed over time. The MCN provides an important framework for development of interest and knowledge base. It allows the fostering of interest amongst clinical colleagues to support succession planning. The manager and all of the MCN lead clinicians have continued to be active members of the British Association for Parenteral and Enteral Nutrition (BAPEN) and European Society for Parenteral and Enteral Nutrition (ESPEN) and are active in the adult and paediatric field of gastroenterology and surgery e.g. Scottish and British Societies of astroenterology (SS and BS) and the Scottish and British and European Societies for Paediatric astroenterology, Hepatology and Nutrition (SSPHAN, BSPHAN and ESPHAN). The manager is a member of the ESPEN Home Artificial Nutrition Working group which aims to improve practice. This has allowed benchmarking activity across a wide range of countries which has revealed that the Scottish arrangements are the model to which many other countries aspire. HPN patients find this information comforting! The recently formed British Intestinal Failure Alliance (BIFA) is a special interest group of BAPEN and the manager is the Secretary, with two Scottish Clinicians in the executive committee. Scottish clinicians appear regularly on the conference programme. This allows championing of the network amongst clinical colleagues who are envious of the infrastructure for HPN management in Scotland. Although the emerging HPN and Intestinal failure network (HIFNET) has challenges around the commissioning of services, much of its impetus came from the standards set in Scotland. The MCN has been reviewed against the Core Principles of HDL (2007) 21. Between 2007 and the start of the MCN review, the MCN manager moved to the Centre of MCNs within NHS Tayside and had annual appraisals. In that period, the MCN submitted three annual reports and three mid year reports to NSD. At no point in this time were any limitations of the MCN highlighted. NSD has acknowledged part of this. Home Parenteral Nutrition Managed Clinical Network: Annual report 6

7 Plans for the year ahead National Services has decided that the MCN will be decommissioned so there are no specific plans for the year ahead. Response from the NMCN for Home Parenteral Nutrition report to NSA We welcome the opportunity to comment on the report that will be tabled at NSA. We do not recognise the network as described by NSD. The network started ten years ago and involved patients from the start. From the outset, the members prepared evidence based standards and protocols now used elsewhere in the UK and rest of the world. Some of the longer term projects such as the quality of life questionnaire continue to be trialled on an international basis. The development of the national contract arose within the network and was then developed in partnership with National Procurement. The number of complaints has been very small and none considered serious. None of these accomplishments are acknowledged in the report and NSD therefore underestimates the impact that the network has had over its ten year lifespan. Until 2009, NSD had encouraged and praised the MCN for its achievements. The 2009 report on the recommendations of the review listed 37 action points with the arbitrary time scale of a year for improvement. No issues were ever flagged prior to 2009 despite production of twice yearly reports and participation in twice yearly face to face meetings. In asking NSA to reject the recommendations from NSD we would ask the fundamental question How will decommissioning the MCN improve the quality of care of patients requiring HPN? We have presented evidence that shows that many Health Boards will have fewer than five patients requiring treatment. Some Health Boards such as Shetland may see one patient every ten years. How will these patients and their clinicians be supported without the MCN structure? With regards to the specific issues raised, we agreed to work with NSD and NIS on the development of the Clinical Audit System, and were assured it would be fit for purpose. Meetings with the developers identified significant problems with our dataset, but no follow up was arranged with NSD/NIS. The failure to include us has had a detrimental effect on our ability to collect meaningful audit. This was disappointing as we had pressed NSD for many years to support the development of such a system. The inability of the MCN to provide adequate data rests significantly with NSD. We have undertaken central venous access device sepsis surveillance. This complication is relatively rare and it will take several years to produce meaningful results. Contrary to the report, all centres provided data. The suggestion that the evidence has been prepared simply because of the review is unfair. Of course, the evidence was prepared as requested by the review. We have also held to our core principles but were instructed to progress the work streams in response to the review recommendations. Similarly, to imply that some items have only been actioned recently is unfair. We were told to implement change over a year and it was made clear at the outset that the MCN would be expected to show improvement rather than completeness of the work plan. We completely reject the statement that work has not progressed in a fully consultative, collaborative fashion. The work plan has been discussed extensively at MCN meetings and in fact has been the sole preoccupation of the MCN over the past year. We would argue that there is no substantial evidence to support this claim by NSD. The suggestion that there was a lack of communication among stakeholders is also incorrect. All stakeholders in the network were fully involved. The statement on page 28 of the work plan Not a roots up approach, done late in the day, most of the information is difficult to comment on as it makes no linguistic sense. If it is meant to imply that we have not involved the root membership of the network, then it is incorrect. Whatever it means, the statement is not supported by evidence. Home Parenteral Nutrition Managed Clinical Network: Annual report 7

8 We do not believe that NSD have adopted an equitable approach to networks and that we have been judged differently to others. For example, there are other networks without a training needs analysis and most have incomplete training registers. With regard to the suggestion that there is no evidence that protocols are being followed; we have shown that all nutrition teams have access to MCN protocols. The protocols themselves form the basis of many of those being used around the UK and wider. At present there are no alternatives in Scotland this includes Bupa Healthcare who administers the contract. Are other networks able to demonstrate 100% compliance with protocols? It is symptomatic that NSD s prime concern is with the administrative element of the network, but has appeared disinterested in the clinical aspects of patients, with a range of diseases, who undertake this highly complex treatment. A more constructive approach such as sharing of good practice amongst networks would have been of considerable benefit to us in responding to the review recommendations. Dr AW McKinlay, Lead Clinician Dr JP Baxter, Manager 30 th May 2011 Home Parenteral Nutrition Managed Clinical Network: Annual report 8

9 Home Parenteral Nutrition - Detailed description of progress over the reporting period Please develop and update the table below to include the network s designation objectives and related agreed annual objectives. When planning for the year ahead, please consider the standard statements in the guidance section to inform the development of annual network objectives. RA status key RA status RED (R) AMBER (A) REEN () Description Little/no progress been made to date to achieving network objective/standard Significant progress been made to date to achieving network objective/standard, however further work is required to fully achieve the network objective The network has been successful in achieving the network objective/standard Objective Planned start/ end dates Description of progress towards meeting objective Outcome / evidence RA status 1.0 PATIENT CENTRED: Providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide all clinical decisions MCN Objective To develop and maintain a register of patients and families HDL (2007) 21 Core Principle 3 & 6 The network will: ensure that care is responsive to individual personal preferences, needs and values and the network ensures that patient values guide all clinical decisions by its members ensure that service users involved in the network are supported and the network acts upon their feedback communicate its work and achievements with service users promote the use of an individualised care plan that is discussed with patients (or equivalent) ensure that improvements in patient care arise from the work of the network consider patient experience along the lines of the Better Together programme Home Parenteral Nutrition Managed Clinical Network: Annual report 9

10 Objective Planned start/ end dates Description of progress towards meeting objective Outcome / evidence RA status 1.1 Maintain MCN database Aug 2010 Mar 2011 The MCN manager and data lead (Dr Ruth McKee) have worked hard towards the MCN IT system. The data fields do not easily suit the HPN patients journey see in evidence folder. Despite the difficulties, we have produced audit data see attached overview and audit paper. All documents in evidence folder. A The issue of readiness of the MCN IT system was raised by Dr McKinlay at the meeting between David Steel and Liz Strachan on14 th July At that stage it was anticipated by NSD that IT system would be operational by July 2009, that it would be a risk to rely on this and that paper based should continue. In the meantime. The MCN submitted their User Requirements following initial meetings NIS, when requested at the start of the project. The MCN has been criticised for being under prepared and therefore losing their pathfinder role. The pathfinder role has not been lost due to the MCN being unprepared. The first version was incompatible with Internet Explorer 6, although subsequently rectified. The constraints were due to difficulty in aligning data fields to the system. This was reported to NSD, but to date have received no direct response. A copy of a sample of paediatric and adult database is included in evidence folder as requested as are examples of pieces of work done as requested by NIS. Further work will not be done Home Parenteral Nutrition Managed Clinical Network: Annual report 10

11 1.2 Patient/carer sub group to be established. May 2010 April 2011 Completed further work will not be progressed All documents in evidence folder. 1.3 Preparation and distribution of a patient newsletter Dec Feb 2011 Completed further work will not be progressed Newsletter in evidence folder 1.4 MCN manager to attend the annual national meeting of Patients on Intravenous and Nasogastric Nutrition Therapy (PINNT) 1.4 Indentify capacity within the Centre for MCNs to upgrade the HPN MCN website as an important vehicle for patient engagement 1.5 The MCN Quality Assurance Programme has been redrafted to include patient reported outcomes patient satisfaction June 2010 July 2010 June 2010 Apr 2011 Completed further work will not be progressed Progressed but further work will not be done. Progressed but further work will not be done. A A 1.6 The MCN Quality Assurance Programme has been redrafted to include patient reported outcomes quality of life assessment to be completed annually. 1.7 Plan MCN conference April 2011 June 2010 Feb 2011 Progressed but further work will not be done. A Very successful meeting with patients and clinical teams in attendance Home Parenteral Nutrition Managed Clinical Network: Annual report 11

12 Objective Planned start/ end dates Description of progress towards meeting objective SAFE: Avoiding injuries to patients from care that is intended to help them Outcome / evidence RA status MCN Objective To allow audit of practice and outcomes and hence provide a basis for improving the quality of care HDL (2007) 21 Core Principle 4 The network will: develop and maintain a risk register, with escalation procedures promote best clinical practice across Scotland develop and promote standards/ guidelines/ protocols 1.1 Instigate audit cycle to include protocol adherence Aug Mar 2011 Progressed but further work will not be done. A 1.2 Undertake a prospective sepsis surveillance audit. Aug 2010 March 2011 Progressed but further work will not be done. A 2.3 Develop patient held records Sept 2010 Progressed but further work will not be done. A 1.3 Undertake exercise to identify the availability of interventional radiologists in each NHS Board Aug 2010 Completed 1.4 Explore audit of nurse training/competence assessment Mar 2011 Completed 1.5 Evidence protocol adherence annually and identify appropriate action to July 2010 Completed Home Parenteral Nutrition Managed Clinical Network: Annual report 12

13 be taken where there is noncompliance 2.7 Establish an escalation process that details how incidents will be highlighted to NHS Boards (1) Sept 2010 Completed 1.8 Establish an escalation process that details how incidents will be highlighted to NHS Boards (2) Aug 2010 Completed Home Parenteral Nutrition Managed Clinical Network: Annual report 13

14 Objective Planned start/ end dates Description of progress towards meeting objective EFFECTIVE: Providing services based on scientific knowledge MCN Objective To ensure patients are managed according to evidence-based, nationally agreed procedures and protocols Outcome / evidence RA status HDL (2007) 21 Core Principles 1, 4, 8 The network will: develop and measure Clinical Outcome Indicators undertake audit activity to inform the work of the network undertake benchmarking activity draw upon, develop and promote the evidence base inform the configuration and development of services across Scotland undertake research activity and make links with relevant universities, colleges and research institutions 3.1Formalise the evidence base available and Aug 2010 Completed continue to develop this. 3.2 Formalise the evidence base available and Aug 2010 Completed continue to develop this Formalise the evidence base available and Aug 2010 Completed continue to develop this Formalise the evidence base available and Aug 2010 Completed continue to develop this Formalise the evidence base available and Aug 2010 Completed continue to develop this Formalise the evidence base available and Aug 2010 Completed continue to develop this Formalise the evidence base available and Aug 2010 Completed continue to develop this Set goals for the current work with NES on an Oct 2010 Completed Home Parenteral Nutrition Managed Clinical Network: Annual report 14

15 education strategy. 3.9 Establish a training register for all members. Oct 2010 Completed 3.10 Build links with the emerging regional gastrointestinal networks June 2010 Completed May 2010 Completed Home Parenteral Nutrition Managed Clinical Network: Annual report 15

16 Objective 3.11 Undertake an organisational development exercise in order to provide clarity around roles, responsibilities and reporting. This should include the implementation of a clear management structures, clearer accountability and terms of flow chart of structure of MCN reference for all network members as a minimum. Planned start/ end dates June 2010 Description of progress towards meeting objective Outcome / evidence RA status Completed Home Parenteral Nutrition Managed Clinical Network: Annual report 16

17 Objective Planned start/ end dates Description of progress towards meeting objective Outcome / evidence EFFICIENT: Avoiding waste, including waste of equipment, supplies, ideas, and energy MCN Objective To enable provision of HPN in as cost effective manner as possible HDL (2007) 21 Core Principle 9 RA status The network will: add value to patient care in NHS Scotland improve access to services for patients use telemedicine/ teleconferencing as appropriate plan to have video conf facilities available for business meetings have an education strategy in place use NHS Education for Scotland tools as appropriate host/facilitate education and training events map and work to streamline the patient pathway make efforts to streamline its practices, create financial efficiencies and work to reduce costs for NHS Scotland (financial profile to be included as appendix 2) 4.1 Continue partnership arrangement with Bupa Healthcare to deliver the HPN national contract. June 2010 Mar 2011 Completed 4.2 Explore with NHS Tayside their inclusion in the national contract. 4.3 Establish a clinical reference group to monitor the performance of the HPN contract May 2010 Mar 2011 May 2010 Completed Completed Home Parenteral Nutrition Managed Clinical Network: Annual report 17

18 Objective Planned start/ end dates Description of progress towards meeting objective Outcome / evidence 5.0 Providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or socio-economic status MCN Objective Revise structure of MCN to meet HDL (2007) 21 To promote equity of access and service delivery at the most appropriate point of contact (supported by agreed clinical standards and transparent service model) HDL (2007) 21 Core Principle 2, 7 The network will: undertake and Equality and Diversity Impact Assessment every three years and act upon its findings (for instance, by considering patient needs through transition) improve local access to services and to clinical expertise use its stakeholder analysis to develop a comprehensive multi-disciplinary membership and a number of relevant links (network membership to be included in appendix 1) develop a communications plan 5.1 Continue to promote equity of access, including evidence based best practice 5.2 Undertake robust mapping of services to identify where it is possible to provide HPN 5.3 Undertake an audit exercise to ascertain the reason for disparity in nutritional care nationally and present this to NSD along with a plan for how equity of access could be achieved 5.4 Map all stakeholders and profile each stakeholder group. This should include the exploration of more meaningful ways of engaging with patients and carers. June 2010 Apr 2011 June 2010 Apr 2011 June 2010 Apr 2011 Sept 2010 Apr 2011 RA status Completed Completed Completed Completed Home Parenteral Nutrition Managed Clinical Network: Annual report 18

19 Objective Planned start/ end dates Description of progress towards meeting objective Outcome / evidence RA status 6.0 TIMELY: Reducing waits and sometimes harmful delays for both those who receive care and those who give care MCN Objective Provide a full list of clinicians/sites with expertise HDL (2007) 21 Core Principle 5 The network will: establish a review process for clinical and patient network literature 6.1 Published list of all sites where HPN may be provided July 2010 Apr 2011 Completed 6.2 Define referral pathways of HPN care July 2010 Apr 2011 Completed Home Parenteral Nutrition Managed Clinical Network: Annual report 19

20 Appendix 1: Network membership HPN Steering roup List Name Designation Address Lynn Aitchison Senior pharmacist, NHS Highland Alison Avenell Honorary rade, Aberdeen Royal Infirmary Dorothy Barber Andrew Barclay Nutrition Support Nurse, Aberdeen Royal Infirmary Consultant Paediatric astroenterologist, Yorkhill Sharon Bell Patient Representative Mike Bisset Consultant, RHSC Edinburgh Elaine Buchanan Dietician, lasgow Royal Infirmary Ron Coggins Surgeon, NHS Highland Bernie Croal Consultant, Aberdeen Royal Infirmary Anne Cruickshank Biochemist, lasgow Royal Infirmary Wendy Cunningham Dan Lassman Linda Davidson Staff Nurse, Queen Margaret Hospital Consultant astroenterologist, Southern eneral Nutrition Nurse Specialist, Victoria Infirmary, lasgow Dawn Jordan Nutrition Nurse, lasgow Royal Infirmary Kevin Deans Registrar, Aberdeen Royal Infirmary Utie Dediare Locum Pharmacist, Aberdeen Royal Infirmary Joan Dimmick Nutrition Nurse, artnavel eneral, lasgow raeme Doherty Pharmacist, lasgow Royal Infirmary Andy Duncan Biochemist, lasgow Royal Infirmary Merrie Dwan Paediatric Nutrition Nurse, NHS rampian Rachel Edwards Clinical Secretary, Yorkhill Ken Fearon Consultant, Edinburgh Royal Infirmary Diana Flynn Paediatric astroenterologist, RHSC Edinburgh Simon Fraser Pharmacist, Yorkhilll Julie Fyall Nutrition Nurse, Ninewells Hospital, Dundee Home Parenteral Nutrition Managed Clinical Network: Annual report 20

21 Peter alloway Biochemist, lasgow Royal Infirmary Ruth rant Patient rep David Hoole Pharmacist, Edinburgh Royal Infirmary Emma Hughes Dietician, Raigmore Hospital, Inverness Craig Hurnauth Dagmar Kastner Nutrition Nurse, Southern eneral Hosp, lasgow Paediatric Consultant, Ninewells Hospital, Dundee Kimberley Brown Dietician, lasgow Jennifer Livingstone Paediatric Dietician, NHS Lothian Sabarinathan Loganathan Paediatric astroenterologist, Aberdeen Sick Children s s.loganathan@nhs.net Fiona MacKay Nutrition Nurse, lasgow Royal Infirmary Fiona.MacKay3@ggc.scot.nhs.uk Isobel MacLeod Paediatric Nutrition Nurse, lasgow isobelmacleod@nhs.net Jonathan Manning Consultant astroenterologist, Borders eneral Hosp Jonathan.Manning@Borders.scot.nh s.uk Tommy McEwan Pharmacist, Ninewells Hospital, Dundee tmcewan@nhs.net Christina Mcuckin Paediatric Nutrition Nurse, Yorkhill, lasgow Christina.mcguckin@nhs.net ill McHattie Nutrition Nurse, Southern eneral, lasgow gmchattie@nhs.net Karen McIntyre Fiona McKay Paediatric Nutrition Nurse, Ninewells Hospital, Dundee Nutrition Nurse, NHS reater lasgow and Clyde Karen.mcintyre@nhs.net Fionamckay3@nhs.net Ruth McKee Consultant, lasgow Royal Infirmary Ruth.mckee@nhs.net Alastair McKinlay Consultant, Aberdeen Royal Infirmary a.mckinlay@nhs.net Janice McKinlay Dietician, Aberdeen Royal Infirmary Janice.McKinlay@nhs.net Lorraine McVie Nutrition Nurse, NHS Lothian Lorraine.mcvie@luht.scot.nhs.uk David Mitchell Consultant astroenterologist, RHSC, Edinburgh David.mitchell@luht.scot.nhs.uk Margaret Moss Head of Service, NHS Highland Margaret.moss@nhs.net Carol Muir Nutrition Nurse, NHS Lothian Carol.Muir@luht.scot.nhs.uk Fraser Munro Paediatric Surgeon, NHS Lothian Fraser.munro@nhs.net Linda Murray Dietician, lasgow Royal Infirmary Linda.murray2@ggc.scot.nhs.uk Regina O Connor Paediatric Dietician, Ninewells Hospital, Dundee Regina.oconnor@nhs.net Home Parenteral Nutrition Managed Clinical Network: Annual report 21

22 Evelyn Ogilvie Dietician, NHS Highland Denis OReilly Biochemist, lasgow Royal Infirmary Catherine Paxton Paediatric Nutrition Nurse, RHSC Edinburgh Kathryn Ralston Dietician, Ninewells Hospital, Dundee Nigel Reynolds Consultant astroenterologist, Ninewells Hospital Marie Richmond Project Officer, National Services Division Kathleen Ross Paediatric Dietician, Aberdeen Children s Hosp kathleenross@nhs.net Subrata Saha Consultant Surgeon, Dumfries & alloway Subrata.saha@nhs.net Arindam Sengupta Consultant astroenterologist, Queen Margaret Hospital, Dunfermline asengupta@nhs.net Alan Shand Consultant, Edinburgh Royal Infirmary Alan.shand@luht.scot.nhs.uk May Shaw Nutrition Nurse, Queen Margaret Hospital, Dunfermline m.shaw1@nhs.net Bill Simpson Biochemist, Aberdeen Royal Infirmary Bill.simpson@nhs.net Nancy Smith Nutrition Nurse, Paisley Nancy.Smith@ggc.scot.nhs.uk Elizabeth Stevenson Suzanne MacKenzie Senior Dietician, Aberdeen Royal Infirmary Biochemist, Crosshouse Hospital, Kilmarnock Elizabeth.stevenson2@nhs.net Suzanne.MacKenzie@aapct.scot.nh s.uk Jan Tait astroenterology Nurse Specialist jantait@nhs.net Katriona Thomson Dietician, Crosshouse Hospital kathriona.thomson@aaaht.scot.nhs.uk John Todd astroenterologist, Ninewells Hospital jtodd@nhs.net Brian Tregaskis Consultant, Belford Hospital b.tregaskis@nhs.net Kirsty Turnbull Nutrition nurse, Ninewells Hospital kirstyturnbull@nhs.net Lynsey Watt Nutrition Nurse, artnavel eneral hospital Lynsey.Watt@ggc.scot.nhs.uk Helen West Dietician, Raigmore Hospital Helen.west2@nhs.net Lucy West Dietician, Aberdeen Royal Infirmary lucywest@nhs.net David Wilson astroenterologist, RHSC, Edinburgh d.c.wilson@ed.ac.uk Satheesh Yalamarthi Consultant, NHS Fife Satheesh.yalamarthi@nhs.net Hazel Younger Consultant astroenterologist, Raigmore Hazel.younger@nhs.net Roslyn Yuill Dietician, Western eneral Hospital Roslyn.yuill@luht.scot.nhs.uk Home Parenteral Nutrition Managed Clinical Network: Annual report 22

23 Adult Home Parenteral Nutrition Scottish Home Parenteral Nutrition Managed Clinical Network HPN PATIENT AUDIT 2010/11 In 2010 there were 107 patients treated with Home Parenteral Nutrition (HPN). Twenty one commenced treatment and 7 stopped. Three patients died all deaths were disease related i.e. none related to complications of HPN. Table 1 ADULT HPN Patients at 31 st March 2011 NHS Health Board (HB) No / HB of treatment Number / HB of residence Ayrshire & Arran 5 8 Borders 0 1 Dumfries & alloway 0 1 Fife 6 8 Forth Valley 0 3 rampian reater lasgow & Clyde Highland 0 0 Lanarkshire 0 8 Lothian 11 5 Orkney 0 1 Shetland 0 0 Tayside Western Isles 0 0 TOTALS Home Parenteral Nutrition Managed Clinical Network: Annual report 23

24 Figure 1.The underlying diagnoses and indications for adult HPN. Patient numbers Crohn's disease Motility disorders Ischaemia Radiation enteritis surgical complications Other Not reported Malabsorption Figure 2. Indications for adult Home Parenteral Nutrition Patient numbers Patient number 0 Short gut Obstruction Fistula Malabsorption Not reported other Insert Nikki s paper Home Parenteral Nutrition Managed Clinical Network: Annual report 24

25 Paediatric Home Parenteral Nutrition Longitudinal data for paediatric home parenteral nutrition (HPN) are scarce, usually from single units and subject to referral bias from large centres of excellence or can have incomplete ascertainment. The 4 tertiary centres in Scotland providing paediatric (<16 years of age) HPN are formalised within the Scottish HPN MCN; only these centres have facilities and expertise to give prolonged PN beyond term. Scotland comprises 8.6% (5.2 million/61 million x 100) of the paediatric population of the UK. Our aim was to demonstrate nationwide incidence and prevalence of need for paediatric HPN in Scotland, as a representative part of the UK. The prospective cohort of HPN cases managed in all 4 tertiary paediatric HPN centres in Scotland (Aberdeen, Dundee, Edinburgh and lasgow) has been ongoing from 01/2003. We reviewed prevalence and incidence of paediatric HPN for each year from 2003 to 2010 (10 months only for 2010), with point prevalence on the 31 st of each October. Outcomes of interest included fate continuing HPN or leaving paediatric network, and reason why. There were 39 HPN cases in this period, with 6 prevalent cases on There were 33 incident HPN, and 28 of 39 stopped HPN (14 adapted, 2 withdrew, 1 transitioned, 1 left Scotland, and 10 died). Survival was 77% over 7 years. Prevalence and incidence data are shown in the table. * only Table 2 Prevalence figures from January 2003-October 2010 Year Point prevalence 31 st Oct Incident cases Period Prevalence We report nationwide data on the incidence and prevalence of paediatric HPN in Scotland, managed in the 4 HPN centres. Extrapolation of our Scottish nationwide data (collected within a national MCN) to the UK ((nx100/8.6)/12years) suggests that there are annual minimum paediatric incidences and period prevalence of 48 and 126 cases respectively needing HPN in the UK, with an increasing trend in the last 8 years. These data are important for counselling families and for planning regional and national paediatric HPN specialist services in the Scotland and the UK. Transition clinics In 2011, there will one sixteen year old undergoing transition for paediatric to adult care within NHS Tayside. There are two thirteen year olds who will start to be considered for transition this year (Yorkhill Hospital to lasgow Royal Infirmary). Home Parenteral Nutrition Managed Clinical Network: Annual report 25

26 MCN Audit data for 2010 The MCN database is available at all centres. The data collected includes: Demographic data Referral details (clinician, hospital) Disease details underlying diagnosis and indication for HPN HPN catheter details Catheter related complications sepsis, central vein thrombosis (CVT) Prescription details Biochemistry including micronutrients Nutritional status Outcome death, bowel adaptation, etc The activity of the MCN has been described above. Audit data is listed in the two tables below. Historically, demographic data and clinical details have been easily available from MCN clinicians. Catheter complication details are provided at regular intervals when requested by the MCN office as are HPN and details and outcomes. Because prescription data changes so frequently, particularly in children, it is more difficult to gain compliance with recording of that data. We are in discussion with Bupa Healthcare as to the feasibility of obtaining the prescription details from them when changes re made. Similar difficulties have arisen when trying to capture micronutrient results. We cannot gain access to all results in Scotland via hospital systems, so have relied on reporting from the nutrition teams. This involves time consuming data input so is difficult to do. We are in discussion with the micronutrient monitoring service to gain results directly from the, rather than rely on clinicians entering data to the database. Home Parenteral Nutrition Managed Clinical Network: Annual report 26

27 Table 3 Adult HPN patient complication rates HPN MCN AUDIT DATA 2010 ADULTS Parameter ARI N/W QMH SH /n VI Xhs WH RI Total patients over year Total patient days Total started (1T) Total stopped Total adapted Total died Total other stopped Total surgery Total unknown stopped Total withdrawal Catheter Related Complications No. CRC s No. pts with CRC s No. caths blocked No. pt with blocked c No. other CRC s No. pts other CRC s No. proven line inf Proven inf/1000 2/ No.pt with proven inf No.suspected line inf No.pt C susp line inf Home Parenteral Nutrition Managed Clinical Network: Annual report 27

28 No. catheter change Catheter change/1000 pt days No. pts cath change CVT ARI = Aberdeen Royal Infirmary, N/W = Ninewells Hospital, Dundee, QMH = Queen Margaret Hospital Dunfermline, SH = Southern eneral Hospital, /n = artnavel eneral Hospital, VI = Victoria Infirmary, lasgow, Xhs = Crosshouse Hospital, Kilmarnock, WH = Western eneral Hospital, Edinburgh RI = lasgow Royal Infirmary Proven line infections Across the MCN in 2010 there were 19 episodes of proven catheter infections. The total patient days were The overall catheter sepsis rate for the MCN for 2010 is 0.65/1000 patient days. The reported adult CRBSI rate is very low and compares very favourably with other centres. Home Parenteral Nutrition Managed Clinical Network: Annual report 28

29 Table 4 Paediatric HPN patient complications rates HPN MCN AUDIT DATA 2010 PAEDS Parameter ARCH Y hill RHSC N/W Total patients over year Total patient days total started total stopped Total adapted Total died Total other stopped Total surgery Total unknown stopped Total withdrawal Mean age at start Disease Crohn s SBS Neuro epithelial Other Unknown CRCs No. CRC s No. pts with CRC s No. catheters blocked Home Parenteral Nutrition Managed Clinical Network: Annual report 29

30 No. pts with blocked c No. other CRC s No. pts other CRC s No. proven line infection Proven catheter days infection/ /2920 3/730 0 No. pts with proven inf No. suspected line inf No. pts with suspected line infection No. catheter change Catheter change/1000 pt days 0 4/2920 1/730 0 No. pts catheter change Central Vein Thrombosis ARCH = Aberdeen Royal Children s Hospital, Y hill = Yorkhill Hospital, lasgow RHSC = Royal Hospital for Sick Children, Edinburgh, N/W = Ninewells Hospital, Dundee CRC = catheter-related complication Children have added risk of contamination and sepsis rates tend to be higher data shows that there were 6 proven line infections in 7 children. This represented a catheter sepsis rate of 1.6 per 1000 catheter days. Home Parenteral Nutrition Managed Clinical Network: Annual report 30