Scottish Home Parenteral Nutrition Managed Clinical Network Annual Report to National Services Division - Dr. Janet Baxter, RD, RNutr, MCN Manager Dr. Alastair McKinlay, MBChB, Lead Clinician
Contents Page 1. Introduction 3 Description of the MCN 3 Purpose of the MCN 4 Services Covered 4 Membership 5 Resources 6 2. Activity Report 7 Performance against work plan 7 Specific service improvements 8 Meetings held 10 3. Audit activity 10 4. Research/teaching activity 13 5. Achievements 13 6. Plans for the year ahead 14 SHPNMCN ANNUAL REPORT 2
1. Introduction The Scottish Home Parenteral Nutrition Managed Clinical Network was launched in November 2000. It aims to ensure equity of access for patients in Scotland who require this specialised treatment for intestinal failure. Description of the Network The Scottish HPN Managed Clinical Network has a defined structure and works within the framework supported by the National Services Division (NSD). A service agreement exists between NSD and NHS Tayside to provide the management of the Managed Clinical Network for HPN. Dr Janet Baxter is the MCN manager and Dr. Alastair McKinlay, Consultant Gastroenterologist, Aberdeen Royal Infirmary is the Lead Clinician. The post of Lead Clinician was due for reappointment in April this year. National Services Division has a new process for the appointment of Lead Clinicians. The post has been advertised with closing date of May 7th 2010. Home Parenteral Nutrition (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. SHPNMCN ANNUAL REPORT 3
Purpose of the Network 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) Provide a full list of clinicians/sites with expertise Services Covered Adult Aberdeen Royal Infirmary Belford Hospital, Fort William Crosshouse Hospital, Kilmarnock Dr. Gray s Hospital Elgin Paediatric Aberdeen Sick Children s Hospital Ninewells Hospital, Dundee RHSC Edinburgh Yorkhill, Glasgow Dumfries & Galloway Royal Infirmary Gartnavel General Glasgow Glasgow Royal Infirmary Ninewells Hospital, Dundee Queen Margaret Hospital, Dunfermline Raigmore Hospital, Inverness Royal Infirmary of Edinburgh Southern General Glasgow Stirling Royal Infirmary Victoria Infirmary Glasgow Western General Hospital, Edinburgh Western Infirmary, Glasgow SHPNMCN ANNUAL REPORT 4
Appendix 1: HPN membership Membership of the NMCN for HPN Name Lynn Aitchison Alison Avenell Dorothy Barber Andy Barclay Sharon Bell Mike Bisset Kimberley Brown Elaine Buchanan Nicola Cairns Ron Coggins Graham Conkie Bernie Croal Anne Cruickshank Wendy Cunningham Linda Davidson Kevin Deans Utie Dediare Joan Dimmick Andy Duncan Joanne Dunne Merrie Dwan Rachel Edwards Lesley Faulds Ken Fearon Diana Flynn Simon Fraser Julie Fyall Peter Galloway Ruth Grant David Hoole Emma Hughes Craig Hurnauth Dawn Jordan Dagmar Kastner Dan Lassman Steven Leadbetter Jennifer Livingstone Sabarinathan Loganathan Matty Lough Margaret MacDonald Christina McGuckin Fiona MacKay Isobel Macleod Jonathan Manning Archibald McConnell Tom McEwan Paraic McGrogan Gillian McHattie Karen McIntyre Ruth McKee Alistair McKinlay Janice McKinlay Lorraine McVie Designation Senior Pharmacist, Inverness Consultant Biochemist, Aberdeen Nutrition Nurse Specialist, Aberdeen Clinical Lecturer, Yorkhill, Glasgow Patient Support Group, Glasgow Consultant Paediatrician, Aberdeen Specialist Dietitian, Southern General, Glasgow Dietitian, Glasgow Senior Pharmacist, Glasgow Royal Infirmary, Glasgow Consultant Surgeon, Raigmore Hospital Pharmacist, Glasgow Consultant Biochemist, Aberdeen Consultant Biochemist, Glasgow Nurse, Queen Margaret s Hospital, Dunfermline Nutrition Nurse Specialist, Glasgow Specialist Registrar, Aberdeen Pharmacist, Aberdeen Nutrition Nurse Specialist, Glasgow Consultant Biochemist, Glasgow Specialist Clinical Pharmacist, Clydebank Nutrition Nurse Specialist, Aberdeen Clinical Scientist, Glasgow Nutrition Nurse Specialist, Ayrshire Consultant Surgeon, Edinburgh Consultant Paediatric Gastroenterologist, Glasgow Pharmacist, Glasgow Nutrition Nurse Specialist, Dundee Consultant Clinical Biochemist, Glasgow Patient Representative Aberdeen Clinical Pharmacist, Edinburgh Renal Dietitian, Inverness Nutrition Nurse Practitioner, Glasgow Nutrition Nurse Specialist, Glasgow Royal Infirmary Consultant Paediatrician, Dundee Consultant Gastroenterologist, Glasgow Pharmacist, Glasgow Senior Paediatric Dietitian, Edinburgh Consultant, Gastroenterologist, Aberdeen Consultant Biochemist, Ayrshire Patient Representative, Dundee Paediatric Nutrition Nurse Specialist, Glasgow Nutrition Nurse Specialist, Glasgow Paediatric Nutrition Clinical Nurse Specialist Consultant Gastroenterologist, Melrose, Borders GH Consultant Biochemist Specialist Clinical Pharmacist, Dundee Senior Consultant Paediatric Gastroenterologist, Glasgow Clinical Nurse Specialist, Glasgow Paediatric Gastroenterology Nurse Specialist, Dundee Consultant Surgeon, Glasgow Consultant Gastroenterologist, Aberdeen Senior Dietitian, Aberdeen Nutrition Nurse, Edinburgh SHPNMCN ANNUAL REPORT 5
David Mitchell Helen Morgan Margaret Moss Carol Muir Fraser Munro Linda Murray Regina O Connor Evelyn Ogilvie David Oliver Denis O Reilly Catherine Paxton Kathryn Ralston Nigel Reynolds Marie Richmond Kathleen Ross Arindam Sengupta Alan Shand Mary Shaw Bill Simpson Nancy Smith Rajeev Srivastava Elizabeth Stevenson Saha Subrata Jan Tait John Todd Brian Tregaskis Kirsty Turnbull Vicki Welch Lynsey Watt David Wilson Lorna Wilson Satheesh Yalamarthi Hazel Younger Roslyn Yuill Consultant Gastroenterologist, Edinburgh Dietitian, Inverness Professional Head of Service, Inverness Nutrition Nurse Specialist Dietetics, Edinburgh Consultant Paediatric Surgeon, Edinburgh Dietetics Clinical Team Leader, Glasgow Paediatrics Dietitian, Dundee Lead Dietitian, Inverness Consultant Physician, Stirling Consultant Clinical Biochemist, Glasgow Nutrition Support Nurse, Edinburgh Dietitian, Dundee Consultant Gastroenterologist, Dundee Assistant Programme Manager, National Services Division Dietitian, Aberdeen Consultant, Nutrition Team Lead, Dunfermline Consultant Gastroenterologist, Edinburgh Nutrition Nurse Specialist, Dunfermline Consultant Biochemist Aberdeen Nutrition Nurse Specialist, Glasgow Consultant Biochemist, Glasgow Senior Dietitian, Elgin Consultant Gastroenterologist, Dumfires Clinical Nurse Specialist-Gastroenterology, Dundee Consultant Gastroenterologist, Dundee Physician, Fort William Nutrition Nurse Specialist, Dundee Nutritional Prescribing Advisor, Glasgow Nutrition Nurse Practitioner, Glasgow Consultant Paediatrician, Edinburgh Senior Pharmacist, Glasgow Consultant, Surgical, Dunfermline Consultant Physician and Gastroenterologist, Inverness Senior Dietitian, Edinburgh Multi-professional approach It is a requirement that the network is truly multi-professional. The HPN network includes representation from medicine, surgery, pharmacy, biochemistry, nursing and dietetics as well as representation from the patients' organisation, PINNT (Patients on Intravenous and Nasogastric Nutrition Therapy) as reflected in the table above. Resources The NMCN for HPN is hosted by NHS Tayside within the Centre for Managed Clinical Networks, Kings Cross Health and Community Care Centre, Dundee. A parttime clerical officer supports the manager. The post of data facilitator is vacant at the moment and the MCN is awaiting guidance regarding reappointment. SHPNMCN ANNUAL REPORT 6
2. Activity Report Performance against agreed 2009/2010 work plan Agreed components Launch newly prepares paediatric database and establish dataset within centres. To participate in the NSD review of the national MCNs in Tayside and Glasgow. Collaborate in a European study, which will inform the use of a new fatty acid source Establish a programme of education. The website will be continually reviewed and upgraded as appropriate. Activities The paediatric database has been established and each centre has provided retrospective and prospective data on paediatric intestinal failure and HPN. The MCN supported the review and worked closely with NSD to provide evidence to address the recommendations of the draft report. It was agreed at the forward planning meeting with NSD in February that although this is a key piece of research that would determine whether changing fatty acid sources could lessen the damage sustained to the liver of patients by long-term HPN. The group agreed that in comparison to other pieces of work on the work plan, the pursuit of involvement in research was not a priority. The network had also begun to work with NHS NES and the Managed Knowledge Network to develop an education strategy. It was agreed at the forward planning meeting with NSD in February that although this is a key piece of MCN activity, NSD would not provide funds to refresh the MCN website. There are no resources available within NHS Tayside to support this. The network suggested that the Managed Knowledge Network could be used to post procedures, protocols and educational resources in the interim until a resource has been identified to maintain the website. SHPNMCN ANNUAL REPORT 7
Specific Service Improvements Accomplished - A national contract for HPN The national contract for HPN (Contract Number NP302/09: TPN Home Delivery) was renewed in March 2010. Bupa Healthcare was awarded the contract for the second time on a two year contract with the option for a one-year extension and then a further one year extension (2+1+1 agreement). The MCN stakeholders group meets with Clinovia on a regular basis and the manager receives a monthly contract report, which is then circulated to all MCN members. This is important documentation as it records all contract activity. BUPA has been asked to report on the following key performance indicators (KPI): Number of new patients installed and turnaround times - adult and paediatric Number of patients removed from contract - adult and paediatric Total number of active patients Number of re-formulations and turnaround times - adult and paediatric Number of holiday deliveries Number of nursing hours invoiced by patient including cost Extraordinary costs Number of incidents relating to contract Information on number of active patients, by adult/paediatric, including number on hold; details of any issues which have arisen during the month e.g. back orders, pump problems; and attendance at meetings. A summary report is provided to the MCN office at 6 and 12 monthly intervals. NHS Tayside has agreed to release funds to allow participation in the contract. SHPNMCN ANNUAL REPORT 8
In progress Response to the recommendations of the MCN strategic review The NMCN for HPN has been in existence since 2001 and has submitted an annual and mid year report every year to NSD since the outset. In 2007, the management of the MCN managed was subsumed by the NHS Tayside Centre of Managed Clinical Networks. At no point since that time has there been any intimation of dissatisfaction with the progress of the MCN. However, although acknowledging the considerable achievements of the MCN, the review of 2010 has highlighted several areas for improvement. The MCN has started to respond to the recommendations of the review although as the report is not yet in the public domain, cannot fully share with stakeholders. - see Plans/objectives for the year ahead Planned review of the MCN documented evidence base The catheter care procedures have been revised and distributed to centres as new patients are referred for education. The documents available for patient management are listed below and will be reviewed during a review process beginning on 25 th May 2010 at the offices of Bupa Home Healthcare in Glasgow. Quality Assurance Programme The MCN Quality Assurance Programme is due for reaccreditation by NHS QIS this year. A draft has been completed and circulated for comment to the subgroup and will be submitted next month. SHPNMCN ANNUAL REPORT 9
MCN Meetings MCN Business Meetings held since June 2009. Date Venue Focus of meeting 24.09.09 Ninewells Hospital, Dundee Attended by NES to discuss nutritional care in hospitals and the plans for improved nutritional education in medicine. 29.04.10 West Park Centre, Dundee Business meeting attended by 30 members. MCN manager and Lead Clinician described the content of the review recommendations and the proposed responses. The members supported all proposals, sub groups were formed. Support for Lead Clinician and manager throughout the process was evident. 3. Audit activity Considerable effort continues to enable accurate data collection from all centres managing patients. We are working with NISG towards a national clinical dataset. The MCN manager has volunteered to participate in some initial testing work on the new MCN IT System. The first module was released to NSD and will undertake trials in the next few weeks. Meanwhile the HPN registry continues to be updated and data analysed for prevalence, admissions and complications. The paediatric group now has accurate datasets including HPN data from 2003-2009 HPN completed retrospectively and from 1 st January 2010 prospective HPN audit. Identification of patients receiving HPN At the start, the network included representation from five hospitals treating 40 HPN patients. The network manager continues to identify all centres and patients in Scotland. The table below compares the numbers of identified patients in July 1999, May last year and May 2010. SHPNMCN ANNUAL REPORT 10
Number of patients and centres in 1999, 2009 and this year 2010. 1999 2009 2010 Total no. patients treated 40 110 109 No. centres treating patients 5 17 15 Patients receiving HPN in Scotland as at 31 st March 2010. Centre - Adults Number NHS Heath Board Area Aberdeen Royal Infirmary 13 Grampian Crosshouse Hospital, Kilmarnock 4 Ayrshire & Arran Edinburgh Royal Infirmary 4 Fife, Lothian, Borders, Lanarkshire Gartnavel Hospital, Glasgow 5 Greater Glasgow & Clyde Glasgow Royal Infirmary 20 Greater Glasgow & Clyde, Lanarkshire Ninewells Hospital, Dundee 20 Tayside Queen Margaret Hospital, Dunfermline 4 Fife Raigmore Hospital, Inverness 1 Highland Southern General Hospital, Glasgow Western General Hospital, Edinburgh 1 Greater Glasgow & Clyde 10 Lothian, Fife Victoria Infirmary, Glasgow 1 Greater Glasgow & Clyde Western Infirmary, Glasgow 1 Forth Valley Edinburgh Sick Children s 2 Lothian Ninewells Hospital, Dundee 2 Tayside Yorkhill Hospital, Glasgow 5 Greater Glasgow & Clyde, Dumfries & Galloway, Forth Valley TOTALS 93 - The map below shows the numbers of patients in each health board of residence and the referral pathways. SHPNMCN ANNUAL REPORT 11
Patients treated with HPN 31 st March 2010 Orkney Shetland Western Isles Wick 1 Highland 1 adult Grampian 12 adults Tayside 23 Forth Valley 4 Greater Glasgow & Clyde 31 2 6 Lanarkshire Ayrshire & Arran 4 Fife 4 Lothian 10 1 1 Borders 1 1 1 Dumfries & Galloway The State Hospitals Board n/a National Waiting Times Centre n/a Adult patient Paediatric patient SHPNMCN ANNUAL REPORT 12
4. Research activity NSD does not support the MCN to carry out research. 5. Achievements of the MCN SHPNMCN ANNUAL REPORT 13
6. Plans/ objectives for the year ahead Meetings Planned for the year ahead. Date Venue Focus of meeting 17.06.10 King s Cross Hospital, Dundee Business 18/25.11.10 TBC Business and Education Work Plan 2010/11. This work plan has been derived from the key recommendations following the Review of nine Managed Clinical Networks by National Services Division (February 2010). Time line Instigate audit cycle to include protocol adherence May 2011 Evidence protocol adherence annually and identify appropriate action to be taken where there is non-compliance May 2011 Continue to promote equity of access, including evidencing best practice May 2011 Designation, location and membership (including sub groups, decision-making groups and accountability structure) to be accurate, published and, maintained May 2011 Revise structure to meet Health department Letter (2007) 21 May 2011 SHPNMCN ANNUAL REPORT 14
This has been formed into an immediate work plan which has already started and will be the focus of a meting which the MCN has requested takes place with NSD in June 2010. Component Undertake robust mapping of services to identify where it is possible to provide Home Parenteral Nutrition. 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. Explore with NHS Tayside their inclusion in the national contract. Establish an escalation process that details how incidents will be highlighted to NHS Boards. 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 reference for all network members as a minimum. Formalise the evidence base available and continue to develop this. Map all stakeholders and profile each stakeholder group. This should include the exploration of more meaningful ways to engage with patients and carers. Establish a training register for all members. Set goals for the current work with NES on an education strategy. Build links with the emerging regional gastrointestinal networks. Status at May 2010 completed completed completed commenced commenced commenced commenced commenced commenced commenced SHPNMCN ANNUAL REPORT 15