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SSccoottttiisshh HHoommee PPaarreenntteerraall NNuuttrriittiioonn

MMaannaaggeedd CClliinniiccaall NNeettwwoorrkk

CLINICAL STANDARDS FOR HOME PARENTERAL NUTRITION

NHS QIS accredited - June 2007

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Contents

1. Introduction

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2. Background of the Scottish Home Parenteral Nutrition Managed Clinical Network

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3. Development of the Quality Assurance Framework

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4. Stakeholders of the Scottish Home Parenteral Nutrition Managed Clinical Network

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5. Evidence Base for the Draft Quality Assurance for the Scottish Home Parenteral Nutrition Managed Clinical Network

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6. Standards for the Scottish Home Parenteral Nutrition Managed Clinical Network

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7. Audit and monitoring arrangements

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8. Reporting arrangements

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9. Glossary of Terms

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1. Introduction Home Parenteral Nutrition (HPN) is a method of intravenous delivery of fluids and nutrients directly into a central vein. 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. There is a wide variation in practice throughout Europe in relation to patient selection for HPN and within Scotland patient referral patterns appear to be inconsistent. Some regions have very few HPN patients. This variation may reflect availability of treatment as well as differences in prevalence of diseases such as Crohn’s disease in different areas. However, there are several large centers where HPN is considered a life saving treatment. The prevalence of HPN patients in the UK as a whole is approximately 5 /million, in Scotland it is 14.3/million. Amongst children, the prevalence is 5/M total population. In February of 2003, NHS Quality Improvement Scotland approved the Clinical Standards for Home Parenteral Nutrition. This approval was valid for three years, after which the Scottish HPN Managed Clinical Network agreed to review and, if necessary, revise the standards. This document is a revised quality assurance framework. This demonstrates that the standards remain relevant and up-to-date, the framework is being used in all parts of the MCN for systematic audit and monitoring and that action has been taken to implement agreed findings of audit and monitoring. This document has been prepared using Managed Clinical Networks Quality Assurance Framework Guidance and template produced by NHS Quality Improvement Scotland. The Scottish Home Parenteral Nutrition Managed Clinical Network Clinical Standards for Home Parenteral Nutrition have been re-accredited by NHS QIS in June 2007 for a further three years.

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2. Background of the Scottish Home Parenteral Nutrition Managed Clinical Network The concept of a Managed Clinical Network for HPN began in 1998 with the publication of the Acute Services Review of the NHS in

Scotland. The review saw the development of managed clinical networks as the most important strategic issue for acute services in

the NHS in Scotland, with the role of the lead clinician as having central importance. The network for HPN began in the summer of

1999 when Professor Chris Pennington met with Sir David Carter at the Scottish Executive Health Department to discuss the way

forward for the management of home parenteral nutrition in Scotland. It was felt that the setting up of a Managed Clinical Network

for HPN in Scotland would best be done with the support of the National Services Division (NSD) of the Common Services Agency

of the Scottish Executive Health Department. The network was formally launched at a meeting in Glasgow on 17th November 2000,

attended by clinicians, and also patients and members of NSD and representation from the Clinical Standards Board for Scotland.

The Managed Clinical Network fulfils the core principles consistent with the policies in Designed to Care and the Acute Services

Review.

The aims of the network are:

• To ensure equity of access

• To ensure that patients are managed according to evidence based, nationally agreed procedures and protocols

• To allow audit of practice and outcomes and hence provide a basis for improving quality of care

• To encourage multi professional care

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Management arrangements

Lead Clinician MCN Manager

Dr. Alastair McKinlay

Consultant Gastroenterologist

Aberdeen Royal Infirmary

Foresterhill

Aberdeen

Tel: 01224 553628

e-mail:a.w.mckinlay@arh.grampian.scot.nhs.uk

Mrs Janet Baxter

MCN Manager

East Block,

Ninewells Hospital & Medical School

Dundee

Tel: 01382 496558

e-mail: janetbaxter@nhs.net

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 patients' organisation and from patients themselves. The network is not

exclusive. Anyone managing patients with HPN is welcome to participate in the activity of the network provided they agree to audit

their practice.

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3. Development of the Draft quality assurance framework The process and principles used in the development of the draft quality assurance framework. The network members have developed the MCN’s quality assurance framework in an open and inclusive process. This included

representation from patients and all professional groups involved in the provision of home parenteral nutrition.

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4. Stakeholders of the Scottish Home Parenteral Nutrition Managed Clinical Network Patients and Public

National Services Division (NSD)

NHS Quality of Improvement Scotland (NHS QIS)

NHS Health Boards

NHS Chief Executives

NHS Clinical Governance Leads

NHS Health Care professionals

- Gastroenterologists

- Surgeons

- Biochemists

- Nutrition nurses

- Pharmacists

- Dietitians

- General practitioners

Pharmaceutical Companies

National Services Advisory Group

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Figure 1. Schematic diagram to show relationship between MCN and NHS Boards

Scottish Home Parenteral Nutrition Managed Clinical Network

CENTRE FOR MCNs

National Services Division

NHS HEALTH BOARDS including NHS QIS

NHS TAYSIDE

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5. Evidence base for the quality assurance framework of the Scottish Home Parenteral Nutrition Managed Clinical Network NHS MEL (1999) 10 Introduction of managed clinical networks within the NHS in Scotland NHS HDL (2002) 69 Promoting the development of managed clinical networks in NHS Scotland NHS HDL (2007) 21 Strengthening the role of managed clinical networks MCN PROTOCOLS

Adult Guidelines for the selection of patients for Home Parenteral Nutrition

Catheter Care Procedures and Protocols for the Patient on Home Parenteral Nutrition

Protocol for trace element and micronutrient monitoring of patients receiving Home Parenteral Nutrition

Protocol for the monitoring of patients receiving HPN

Information on Home Parenteral Nutrition for patients and carers

Prevention, Diagnosis and Management of Thrombotic Complications of Central Venous Access For PN

The in-line filtration of parenteral nutrition solutions

Protocol for the management of suspected catheter-related sepsis

Paediatric

Guidelines for the selection of Paediatric patients for Home Parenteral Nutrition

Initial Assessment of Paediatric Patients for Home Parenteral Nutrition (HPN)

Initial assessment of paediatric patients planned for Home Parenteral Nutrition (HPN)

Information for Children on Home Parenteral Nutrition

Management of Central Line Sepsis In Paediatric Patients

Prevention, Diagnosis and Management of Thrombotic Complications of Central Venous Access For PN in Children

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6. Standards for the Scottish Home Parenteral Nutrition Managed Clinical Network

STANDARD TITLE

1 ORGANISATION: Management arrangements and accountability

2 PATIENT INFORMATION AND EDUCATION

3 MULTI-PROFESSIONAL WORKING

4 STAFF EDUCATION AND TRAINING

5 AUDIT

6 MANAGEMENT OF INTESTINAL FAILURE

7 DISCHARGE

8 FOLLOW UP AND MONITORING

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STANDARD 1 – ORGANISATION: Management arrangements and accountability Standard Statement Rationale Criteria 1 (a) The Scottish Home Parenteral Nutrition Managed Clinical Network management arrangements will include a Lead Clinician and a Network Manager. 1 (b) The MCN will be truly multi-professional, including representation from the patient group. e.g. PINNT (patients on intravenous and nasogastric nutrition therapy. 1 (c) The MCN will provide suitable support for patient representatives involved in the management arrangements. e.g. PINNT.

An appropriate management structure is essential for the effective development of the MCN to provide clarity in order to effectively deliver results. Patient care outcomes are improved when patients and their carers are involved in clinical care decisions. Protocol for Managed Clinical Network Quality Assurance Frameworks. Clinical Standards Board for Scotland (2001). Patient Focus and Public Involvement (Scottish Executive, 2003). NHS QIS Clinical standards: Generic (2002).

1. The Lead Clinician will have overall

responsibility for the operation of the network.

2. The MCN manager will be responsible

for the effective functioning of the MCN, supported by a multi-professional executive group.

3. There will be patient representation on

the executive group of the MCN.

4. The MCN manager will work closely with patient representatives to support their role.

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STANDARD 2 – PATIENT INFORMATION AND EDUCATION Standard Statement Rationale Criteria 2 (a) The patient and/or carer are involved in decision making at all stages of care, from assessment to discharge subject to personal choice. 2 (b) All patients are provided with appropriate information materials about their diagnosis and treatment (in a format accessible to the patient).

The patient and/or carer have a better ability to cope at home if they have been involved in clinical care decisions. The patient and/or carer will require appropriate training and information to provide him/her with the confidence and competence to manage at home. The care received/provided must be safe. Managed Clinical Networks NHS MEL (1999) 10. NHS HDL (2002) 69. Wood S (Ed). BAPEN (1995). Quality Criteria for Clinical Services and the Supply of Nutrient Fluids and equipment Fair for All: Working together towards culturally-competent services NHS HDL (2002) 51.

1. The implications of HPN are discussed with the

patient and/or carer. 2. The goals of HPN are clearly defined and potential

benefits and risks identified. 3. There is written MCN information on HPN and

additional information as developed by the MCN over time given to patients.

4. The patient is given contact details for the patient support group, Patients on Intravenous and Nasogastric Nutrition Therapy (PINNT).

5. The patient is referred to social work if necessary from the Department of Works & Pensions.

6. One member of the team co-ordinates the training programme.

7. The patient and/or carer complete a teaching programme, which will include practical training.

8. Progress with training programme is documented. 9. Procedures are adapted according to the patient’s

physical skills and environment taking into account equality and diversity.

10. On completion of training the competency of the patient and/or carer will be assessed.

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STANDARD 3 – MULTI-PROFESSIONAL WORKING Standard Statement Rationale Criteria 3 (a) The management of patients receiving Home Parenteral Nutrition (HPN) is multi professional. 3 (b) There is a named Lead Consultant for HPN services within each hospital or centre accepting HPN referrals.

To ensure co-ordination and appropriate management of a patient within a multi professional team, it is essential that there is a named lead consultant in each hospital who regularly reviews the patient together with the other team members. There are multiple aspects to the care of patients receiving HPN that cannot be addressed by a single profession. Wood S (Ed). BAPEN (1995). Quality Criteria for Clinical Services and the Supply of Nutrient Fluids and Equipment. Managed Clinical Networks NHS HDL (2002) 69. Managed Clinical Networks NHS HDL (2007) 21.

Essential

1. There is a named lead consultant with responsibility for the management of the provision of care provided by the multi professional team minimum of clinician, nutrition nurse specialist, pharmacist, specialist dietitian.

2. Arrangements are in place to ensure that MCN services are accessible to district general hospitals and tertiary services as required.

3. The multi professional team including consultant reviews the patient, at least every 4 months.

4. MCN wide evidence-based guidelines, protocols and procedures are used for the care of the nutrition catheter and other care.

Desirable The multi professional team includes consultant clinician, named nurse, dietitian and a pharmacist, with access to psychology and other support mechanisms.

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STANDARD 4 – STAFF EDUCATION AND TRAINING Standard Statement Rationale Criteria 4 (a) All health professionals involved in the management of HPN patients undertake continuing professional development (CPD) in the subject of artificial nutritional support.

Patient outcomes are improved when there are appropriately experienced staff available to provide the care. The MCN requires an appropriately qualified multi-professional team to meet the needs of patients receiving HPN. CPD is an essential requirement for all health professionals. Team working is an essential competence for members of the MCN. Wood S (Ed). BAPEN (1995). Quality Criteria for Clinical Services and the Supply of Nutrient Fluids and Equipment.

1. Those providing HPN services are using the information, advice and experience in the management of patients, provided by the MCN. 2. The employing Trust will support Continuing Professional Development for this subject. Clinician – Intercollegiate Course on Clinical Nutrition Dietitian – Parenteral & Enteral Nutrition Group of BDA Pharmacist – British Pharmaceutical Nutrition Group Nurse – regular participation in Network Nurses Group All should attend minimum of one MCN meeting annually. 3. There is documented evidence of regular discussion of work practice at a local level within the multi professional team.

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STANDARD 5 – AUDIT AND MONITORING Standard Statement Rationale Criteria 5 (a) Prospective clinical audit is an integral part of the HPN Managed Clinical Network. 5 (b) All health professionals involved in the MCN should actively participate in audit and open reviews of results.

Clinical audit is a continuous process that helps to identify clinically important variations in practice and encourages examination of the reasons for these. It identifies the changes required to effect improvements. An integral function of the Managed Clinical Network is to audit performance on the basis of standards and guidelines. NHS HDL (2002) 69. Promoting the development of managed clinical networks in NHS Scotland. Protocol for Managed Clinical Network Quality Assurance Frameworks. Clinical Standards Board for Scotland. (2001). SIGN Guideline 1: Clinical Guidelines: Criteria for Appraisal and National Use. (1995). NHS HDL (2007) 21 Strengthening the role of managed clinical networks.

1. There is continuous collection of MCN

audit data by staff in each centre/hospital.

2. Clinical network audit is completed and

sent to the manager. HPN data is submitted to BANS and updated as required by the network manager.

3. Feedback is provided through the

annual reporting of our four core indicators:

• central venous catheter replacements

• frequency of catheter-related complications (CRCs)

• treatment of CRCs

• hospital readmission rates

• additional audits as developed by the MCN over time

4. Results are reviewed within the MCN as

part of a continuous process of quality improvement.

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STANDARD 6 – MANAGEMENT OF INTESTINAL FAILURE Standard Statement Rationale Criteria 6 (a) HPN should be administered and monitored by a multi-professional group with recognised expertise in HPN and access to expertise in intestinal failure. 6 (b) The central catheter should be inserted using an aseptic technique by an experienced clinician. 6 (c) There will be a written prescription for the nutrition regimen based an assessment of requirements. 6 (d) Patients diagnosed with catheter related complications are treated according to MCN protocols

Difficulties can arise from the associated techniques and management of intestinal failure. Home parenteral nutrition carries risks as well as benefits and other means of treatment should be adequately explored prior to HPN. Potential complications associated with catheter insertion are minimised if appropriately trained staff carry out the procedure. The nutritional status of the patient will be maintained or improved if the regimen is individualised. Outcomes of catheter related complications are improved if managed in accordance with evidence based best practice. Guidelines for the selection of patients for Home Parenteral Nutrition. Scottish HPN MCN: 2003. HPN patient selection protocol. Department of Intestinal Failure, St. Marks Hospital London.

1. All patients who are considered for HPN

should have documented intestinal failure, which if untreated would lead to deteriorating nutritional and/or fluid status. There should be documented failure of enteral nutrition. A combination of oral/enteral and parenteral may be managed.

2. Patients are trained until there is joint

‘signing off’ of competencies.

3. An assessment should be made of the patient’s physical environment.

4. Clinicians responsible for catheter insertion

should be experienced or be supervised by an experienced operator.

5. Wherever possible ultra sound guidance

should be used for internal jugular line insertion.

6. There should be evidence that

consideration is given on the choice of type and site of vascular access, and feeding system suitable for patient’s lifestyle.

7. There will be nutrition goals set for each

patient.

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Wood S (Ed). BAPEN (1995). Quality Criteria for Clinical Services and the Supply of Nutrient Fluids and Equipment. Dept. of Health (2001) Guidelines for preventing infections associated with the insertion and maintenance of central venous catheters. Journal of Hospital Infection; 47: 547-67. www.idealibrary.com. National Institute for Clinical Excellence 2002. The effectiveness and cost effectiveness of ultrasound location devices for central venous access. NHS R & D HTA Programme. www.nice.org.uk Management of suspected catheters – related blood stream infection in HPN patients. www.show.scot.nhs.uk/shpnmcn Protocol for the detection, prevention and treatment of central vein thrombosis. www.show.scot.nhs.uk/shpnmcn

8. The nutrition team will agree the feeding

prescription. This will be based on the nutritional and clinical assessment by the dietitian.

9. Prescription will be based on requirements

for electrolytes fluid, energy, nitrogen, and micronutrients. The formulation will be checked by the pharmacist for stability.

10. There will be access to catheter care

procedures as well as complication management protocols.

11. These should be accessible by all ward

staff who are trained in their use

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STANDARD 7 – DISCHARGE Standard Statement Rationale Criteria 9 (a) The patient and/or carer are involved in discharge planning.

Effective discharge planning will affect the patient and/or carers’ ability to cope at home. Communication between all health care professionals is essential. Wood S (Ed). BAPEN (1995). Quality Criteria for Clinical Services and the Supply of Nutrient Fluids and Equipment.

1. Discharge planning commences after the decision for

HPN has been made and involves the multi professional team, the patient and the carer.

2. All information related to discharge is documented.

3. A member of the multi professional team or home

care company carries out an assessment of home circumstances.

4. The patient and/or carer have clear information of the

home delivery discharge plans, including access to supplies.

5. The patient is not discharged until all services

relating to HPN are in place.

6. The General Practitioner and District Nursing Staff is informed of discharge arrangements.

7. The patient and/or carer have a list of contact

numbers of the multi professional team.

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STANDARD 8 - FOLLOW-UP AND MONITORING Standard Statement Rationale Criteria

10 (a) All patients are provided with continuing support after discharge.

The risk of potential complications will be reduced if the patient and/or carer are given ongoing support at home. Wood S (Ed). BAPEN (1995). Quality Criteria for Clinical Services and the Supply of Nutrient Fluids and Equipment.

1. The patient and/or carer receive a

telephone call or visit on day 1 after discharge, regularly within the first 3 months and subsequently as required. This communication should be documented.

2. The patient and/or carer have

access to 24- hour telephone advice where they can contact experienced staff.

3. The patient and/or carer are given

written information on the detection and treatment of complications.

4. There is a procedure for admission.

5. The MCN protocols are available on

the ward and both staff and patients are aware of this.

6. The multi professional team reviews

the patient according to current follow up protocol.

7. There will be a post-discharge

monitoring protocol, established by the MCN.

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8. Patients should be reviewed on a planned basis by the multi professional team at least every 4 months.

9. The multi-professional team reviews

the patient according to current follow up protocol. Assessment of the

supply arrangements pump weight/height/anthropometry feed prescription and formulation biochemistry including micronutrients bone density (every two years) medication

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7. Audit and monitoring arrangements

� The revised standards will be published and issued to all nutrition support teams managing HPN patients. Self-assessment

� The self-assessment framework will be finalised and issued.

� The NST completes the self-assessment and submits to the MCN manager.

� The MCN manager prepares for the review visit.

� The network manager will visit each of the HPN centres to perform the audit using a prepared quality improvement tool.

� The MCN manager meets with the NST to discuss performance against standards.

� The centres will be audited with regard to the structure and function of the nutrition support team. Audit

� Clinical audit data is submitted to the network manager on an ongoing basis to enable assessment of clinical quality indicators:

• Central venous catheter insertions

• Frequency of catheter-related complications

• Treatment of catheter-related complications

• Hospital re-admission rates

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8. Reporting arrangements

• Once the self-assessment followed by the review visits have been completed a draft report will be prepared and discussed with the Lead Clinician.

• A final report is then submitted to the nutrition support team lead consultant, NHS Quality Improvement Scotland, Chief Executives and Clinical Governance Leads.

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8. GLOSSARY OF TERMS Alphabetical list of definitions Assessment The process of measuring patient’s needs and/or the quality of an activity, service or organisation.

Audit The measuring and evaluation of care against agreed standards with a view to improving practice

and care delivery.

Carer A person who looks after family, partners or friends in need of help because they are ill, frail or have

a disability.

Catheter Intravenous line used to infuse fluids.

Continuing professional

development (CPD)

An ongoing commitment to learning in various forms, which maintains and enhances professional

standards of work, and develops the ability to recognise good practice.

Corporate governance The system by which an organisation directs and controls its functions and relates to its

stakeholders.

CPD See continuing professional development.

Criterion (s)/criteria (pl) Provide the more detailed and practical information on how to achieve the standard

Diagnosis Identification of an illness or health problem by means of its signs and symptoms. This involves

ruling out other illnesses and causal factors for the symptoms.

Discharge A discharge marks the end of an episode of care. Types of discharge include in-patient discharge,

day-case discharge, day-patient discharge and outpatient discharge.

Enteral nutrition The feeding of nutrients directly into the gut.

Essential

(Criterion/criteria)

A criterion that must be met wherever a service is provided. See criterion.

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Evidence-based Evidence-based clinical practice is an approach to decision making in which the clinician uses the

best evidence available, in consultation with the patient, to decide upon the option, which suits that

patient best.

Guidelines Statements, which help in deciding how to treat particular conditions.

Healthcare professional A person qualified in a health discipline.

Home parenteral nutrition

(HPN)

The patient is provided with the technology of PN at home.

Intestinal failure The reduction of intestinal absorption so that macronutrient and/or water and electrolyte supplements

are needed to maintain health and/or growth. Under nutrition and/or dehydration result if no

treatment is given or if compensatory mechanisms do not occur.

Intravenous feeding (IV) Parenteral nutrition

Malnutrition A state of nutrition in which a deficiency, excess of imbalance of energy, protein or other nutrients

causes measurable adverse effects on body function and clinical outcome.

Managed Clinical Network

(MCN)

A formally organised network of clinicians. The main function is to audit performance on the basis of

standards and guidelines, with the aim of improving healthcare across a wide geographic area, or for

specific conditions.

Monitoring The systematic process of collecting information on the performance of clinical or non-clinical

activities, actions or systems. Monitoring may be intermittent or continuous. It may also be

undertaken in relation to specific incidents of concern or to check key performance areas. Monitoring

is used to appraise strengths, weaknesses, opportunities and threats.

Multi-professional A multi-professional team is a group of people from different professions (both healthcare and non-

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(prof) healthcare) who work together to provide care for patients with a particular condition. The

composition of multi-professional teams will vary according to many factors. These include: the

specific condition, the scale of the service being provided and geographical/socio-economic factors

in the local area.

NHS Board NHS Boards are responsible for the strategic planning, service delivery, performance management

and governance of each of Scotland’s 15 local health systems.

NHS QIS See NHS Quality Improvement Scotland

NHS Quality Improvement

Scotland

(NHS QIS)

NHS Quality Improvement Scotland is a statutory body, established as a Special Health Board in

January 2003. Its role is to focus on improving the quality of patient care and the health of patients.

It will have a particular emphasis on the quality of care and the patient journey for vulnerable groups.

NHS Quality Improvement Scotland has been created by the merger of five organisations: Clinical

Standards Board for Scotland (CSBS); Health Technology Board for Scotland (HTBS); Scottish

Health Advisory Service (SHAS); Nursing and Midwifery Practice Development Unit (NMPDU); and

the Clinical Resources and Audit Group (CRAG). Website address: www.nhshealthquality.org

NHS Scotland The National Health Service in Scotland

Nutritional requirements Requirements for micronutrients (vitamins, minerals and trace elements) and macronutrients such as

protein (nitrogen) and calories in the form of fat and glucose.

Outcome The end result of care and treatment and/or rehabilitation. In other words, the change in health,

functional ability, symptoms or situation of a person, which can be used to measure the effectiveness

of care and treatment, and/or rehabilitation.

Parenteral nutrition (PN) The infusion of nutrients through a needle or cannula directly into a vein, so bypassing the gut.

Patient A person who is receiving care or medical treatment.

A person who is registered with a doctor, dentist, or other healthcare professional, and is treated by

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him/her when necessary. Sometimes a patient is referred to as a service user.

PINNT Patient support group – Patients on Intravenous and nasogestic nutrition therapy.

Patient journey The pathway through the health services taken by the person who is receiving treatment, and as

viewed by that person.

Plan An operational tool to manage activity in the quest to achieve objectives.

Policy The highest level statement of intent and objectives within an organisation.

Procedure Operational instruction to regulate activity.

Protocol A policy or strategies, which defines, appropriate action in specific circumstances. Protocols may be

national, or agreed locally to take into account local requirements.

Quality assurance (QA) Improving performance and preventing problems through planned and systematic activities including

documentation, training and review.

Rationale Scientific/objective reason for taking specific action.

Referral The process whereby a patient is transferred from one professional to another, usually for specialist

advice and/or treatment.

Standard statement An overall statement of agreed performance.

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Scottish Home Parenteral Nutrition

Managed Clinical Network

www.shpnmcn scot.nhs.uk