Specialised Services Policy: CP24 Home Administered Parenteral Nutrition (HPN)

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Specialised Services Policy: CP24 Home Administered Parenteral Nutrition (HPN) Document Author: Specialist Services Planning Manager for Neurosciences and Complex Conditions Executive Lead: Director of Planning Approved by: WHSSC Executive Board Issue Date: 5 th August 2014 Review Date: August 2017 Document No: CP24 (HPN) Page 1 of 19

Document History Revision History Version No. Revision date Summary of Changes Updated to version no.: 0.1 05/11/2007 Layout 0.1 0.1 20/11/2007 Title 0.1 0.1 14/01/2007 Title, Distribution List, Administration 0.1 Support 0.1 28/01/2008 Minor Text Amendments 0.1 0.1 07/03/2008 Minor Text Amendments to 1.0 Prioritisation Section 1.0 09/07/2008 Minor text amendment to reflect NCAB 1.1 approval 1.1 March 2013 Ratified through Chair s Action on 2.0 behalf of Management Group 2.1 June 2013 Additional access criteria included - 2.1 additional criteria - AND where enteral feeding/fluids is not practicable or has failed. Referral pathway for children included 2.1 August 2014 Ratified 3.0 Date of next revision August 2017 Consultation Name Date of Issue Version Number PINNT 18 th June 2014 2.1 Regional HPN Centre - UHW 18 th June 2014 2.1 Severe Intestinal Failure Service - SRFT 18 th June 2014 2.1 Specialist Nutrition Team - BCU 18 th June 2014 2.1 Approvals Name Date of Issue Version No. HCW Chief Executive January 2008 0.7 National Commissioning Advisory Board March 2008 1.0 WHSSC Management Group 05.03.2013 2.0 WHSSC Executive Board 05.08.2014 3.0 Distribution this document has been distributed to Name By Date of Issue Version No. (HPN) Page 2 of 19

Policy Statement Background Summary of clinical criteria Home Parenteral Nutrition (HPN) is a means of delivering fluids and nutrients via an indwelling intravenous catheter to patients within their own homes. It is needed for patients that have a chronic inability to absorb adequate fluids and nutrients to maintain independent health. If the patient wishes to be referred to a provider out of the agreed pathway, an IPFR should be submitted. WHSSC will fund Home Parenteral Nutrition for adult and paediatric patients with long term Intestinal Failure who are either: Awaiting reconstructive surgery leading to restoration of gut continuity and function; OR With irreversible intestinal failure (except patients who require short term feeding) AND Where enteral feeding/fluids is not practicable or has failed. WHSSC will fund a nurse to assist with administration of HPN if the carer and/or patient are unable to administer for themselves. Responsibilities Referrers should: Inform the patient that this treatment is not routinely funded outside the criteria in this policy; and Refer via the agreed pathway. Clinician considering treatment should: Discuss all the alternative treatment with the patient; Advise the patient of any side effect and risks of the potential treatment; Inform the patient that treatment is not routinely funded outside of the criteria in the policy; and Confirm that there is contractual agreement with WHSSC for the treatment. In all other circumstances submit an IPFR. The preparation and delivery of HPN is provided (HPN) Page 3 of 19

via an all Wales contract with a home care company. Patients are referred to the home care company by the Parenteral Nutrition Teams at University Hospital of Wales and Hope Hospital. (HPN) Page 4 of 19

Table of Contents 1. Aim... 6 1.1 Introduction... 6 1.2 Relationship with other Policies and Service Specifications.. 6 2. Scope... 7 2.1 Definition... 7 2.2 Codes... 7 3. Access Criteria... 11 3.1 Clinical Indications... 11 3.2 Criteria for Treatment... 11 3.3 Referral Pathway... 12 3.4 Exclusions... 12 3.5 Exceptions... 12 3.6 Responsibilities... 12 4. Putting Things Right: Raising a Concern... 14 5. Equality Impact and Assessment... 15 Annex (i)... 16 Annex (ii) Checklist... 18 (HPN) Page 5 of 19

1. Aim 1.1 Introduction The document has been developed as the policy for the planning of Home Administered Parenteral Nutrition (HPN) for Welsh patients. The policy applies to residents of all seven Health Boards in Wales. The purpose of this document is to: Set out the circumstances under which patients will be able to access Home Administered Parenteral Nutrition (HPN) services; clarify the referral process; and define the criteria that patients must meet in order to access treatment. 1.2 Relationship with other Policies and Service Specifications This document should be read in conjunction with the following documents: All Wales Policy: Making Decisions on Individual Patient Funding Requests (IPFR). (HPN) Page 6 of 19

2. Scope 1. Purpose 2.1 Definition Home Parenteral Nutrition (HPN) is a means of delivering fluids and nutrients via an indwelling intravenous catheter to patients within their own homes. It is needed for patients that have a chronic inability to absorb adequate fluids and nutrients to maintain independent health.. 2.2 Codes ICD-10 Codes Note: In the case of IF and HPN there are many ICD codes which identify conditions, such as Crohn s disease, where IF may sometimes be present but equally may not be present. Consequently the ICD codes listed here do not of themselves indicate that IF is present and cannot be used as method of counting IF cases. ICD- ICD-10 Category ICS-10 Sub-category 10 Code E40X Kwashiorkor Kwashiorkor E41X Nutritional marasmus Nutritional marasmus E42X Marasmic kwashiorkor Marasmic kwashiorkor E43X Unspecified severe proteinenergy malnutrition Unspecified severe protein-energy malnutrition E440 Protein-energy malnutrition of Moderate protein-energy malnutrition moderate and mild degree E441 Protein-energy malnutrition of Mild protein-energy malnutrition moderate and mild degree E45X Retarded development following protein-energy malnutrition Retarded development following protein-energy malnutrition E46X Unspecified protein-energy malnutrition Unspecified protein-energy malnutrition K401 Inguinal hernia Bilateral inguinal hernia, with gangrene K404 Inguinal hernia Unilateral or unspecified inguinal hernia, with gangrene K411 Femoral hernia Bilateral femoral hernia, with gangrene (HPN) Page 7 of 19

K414 Femoral hernia Unilateral or unspecified femoral hernia, with gangrene K421 Umbilical hernia Umbilical hernia with gangrene K431 Ventral hernia Ventral hernia with gangrene K441 Diaphragmatic hernia Diaphragmatic hernia with gangrene K451 Other abdominal hernia Other specified abdominal hernia with gangrene K461 Unspecified abdominal hernia Unspecified abdominal hernia with gangrene K500 Crohn's disease [regional Crohn's disease of small intestine enteritis] K508 Crohn's disease [regional Other Crohn's disease enteritis] K510 Ulcerative colitis Ulcerative (chronic) enterocolitis K518 Ulcerative colitis Other ulcerative colitis K520 Other non infective gastroenteritis and colitis Gastroenteritis and colitis due to radiation K521 Other non infective Toxic gastroenteritis and colitis gastroenteritis and colitis K528 Other non infective gastroenteritis and colitis Other specified non infective gastroenteritis and colitis K550 Vascular disorders of intestine Acute vascular disorders of intestine K551 Vascular disorders of intestine Chronic vascular disorders of intestine K558 Vascular disorders of intestine Other vascular disorders of intestine K560 Paralytic ileus and intestinal Paralytic ileus obstruction without hernia K561 Paralytic ileus and intestinal Intussusception obstruction without hernia K562 Paralytic ileus and intestinal Volvulus obstruction without hernia K565 Paralytic ileus and intestinal obstruction without hernia Intestinal adhesions [bands] with obstruction K567 Paralytic ileus and intestinal Ileus, unspecified obstruction without hernia K570 Diverticular disease of intestine Diverticular disease of small intestine with perforation and abscess K574 Diverticular disease of intestine Diverticular disease of both small and large intestine with perforation and abscess K578 Diverticular disease of intestine Diverticular disease of intestine, part unspecified, with perforation and abscess (HPN) Page 8 of 19

K592 Other functional intestinal disorders Neurogenic bowel, not elsewhere classified K598 Other functional intestinal disorders Other specified functional intestinal disorders K630 Other diseases of intestine Abscess of intestine K631 Other diseases of intestine Perforation of intestine (nontraumatic) K650 Peritonitis Acute peritonitis K658 Peritonitis Other peritonitis K659 Peritonitis Peritonitis, unspecified K660 Other disorders of peritoneum Peritoneal adhesions K668 Other disorders of peritoneum Other specified disorders of peritoneum K669 Other disorders of peritoneum Disorder of peritoneum, unspecified K673 Disorders of peritoneum in infectious diseases classified elsewhere Tuberculous peritonitis 1 K85X Acute pancreatitis Acute pancreatitis K860 Other diseases of pancreas Alcohol-induced chronic pancreatitis K900 Intestinal malabsorption Coeliac disease K902 Intestinal malabsorption Blind loop syndrome, not elsewhere classified K908 Intestinal malabsorption Other intestinal malabsorption K909 Intestinal malabsorption Intestinal malabsorption, unspecified K912 K913 K930 Post procedural disorders of digestive system, not elsewhere classified Post procedural disorders of digestive system, not elsewhere classified Disorders of other digestive organs in diseases classified elsewhere Postsurgical malabsorption, not elsewhere classified Postoperative intestinal obstruction Tuberculous disorders of intestines, peritoneum and mesenteric glands 2 1 Comment from Connecting for Health: please note this code should be preceded by A18.3 Tuberculosis of intestines, peritoneum and mesenteric glands 2 Comment from Connecting for Health: please note this code should be preceded by A18.3 Tuberculosis of intestines, peritoneum and mesenteric glands (HPN) Page 9 of 19

K931 Disorders of other digestive organs in diseases classified elsewhere Megacolon in Chagas' disease 3 3 Comment from Connecting for Health: please note this code should be preceded by B57.3 Chagas' disease (chronic) with digestive system involvement (HPN) Page 10 of 19

3. Access Criteria 3.1 Clinical Indications The commonest cause of patients requiring home parenteral nutrition in the UK is the development of short bowel syndrome. The causes for this are Crohn's disease, mesenteric vascular disease, volvulus and surgical complications. Other indications include intestinal fistulae, motility disorders (usually pseudo obstruction syndromes and systemic sclerosis) and squeal of radiation damage (radiation enteritis). Many of these patients have other complex medical needs including care of their underlying disease process, external abdominal fistulae, and care of high output abdominal stomas. Hospital centres may have complete care of all aspects of the underlying disease process and its treatment, responsibility for the nutrition and its monitoring only, or shared care between major and local centres. There are three main categories of intestinal failure: Type One - is short-term, self limiting, often peri-operative in nature and relatively common. Patients are managed in a multitude of healthcare settings, especially surgical wards, units performing major abdominal surgery and high dependency / intensive care units. Type Two - Patients awaiting reconstructive surgery leading to restoration of gut continuity and function. Type Three - Patients with irreversible intestinal failure. This policy covers the provison of HPN for patients with types two and three intestinal failure. 3.2 Criteria for Treatment WHSSC will fund Home Parenteral Nutrition for adult and paediatric patients with long term Intestinal Failure: Awaiting reconstructive surgery leading to restoration of gut continuity and function; OR With irreversible intestinal failure (except patients who require short term feeding); AND Where enteral feeding/fluids is not practicable or has failed. (HPN) Page 11 of 19

WHSSC will fund the requirement of a nurse to assist with administration of HPN if the carer and/or patient are unable to administer for themselves. 3.3 Referral Pathway Patients with Intestinal Failure are clinically managed at Hope Hospital, Salford Royal NHS Foundation Trust (patients from North Wales) and University Hospital of Wales, Cardiff & Vale University Health Board (patients from South Wales). The preparation and delivery of HPN is provided via an all Wales contract with a home care company. Patients are referred to the home care company by the Parenteral Nutrition Teams at University Hospital of Wales and Hope Hospital. If the patient wishes to be referred to a provider out of the agreed pathway, an IPFR should be submitted. 3.4 Exclusions WHSSC will not fund HPN for patients who are receiving nutrition for non-related palliative care. 3.5 Exceptions If the patient does not meet the criteria for treatment, but the referring clinician believes that there are exceptional grounds for treatment an Individual Patient Funding Request (IPFR) can be made to WHSS under the All Wales Policy for Making Decisions on Individual Patient Funding Requests (IPFR). If the patient wishes to be referred to a provider out of the agreed pathway, an IPFR should be submitted. Guidance on the IPFR process is available at www.whssc.wales.nhs.uk 3.6 Responsibilities Referrers should: Inform the patient that this treatment is not routinely funded outside the criteria in this policy; and (HPN) Page 12 of 19

Refer via the agreed pathway. Clinician considering treatment should: Discuss all the alternative treatment with the patient; Advise the patient of any side effect and risks of the potential treatment; Inform the patient that treatment is not routinely funded outside of the criteria in the policy; and Confirm that there is contractual agreement with WHSSC for the treatment. In all other circumstances submit an IPFR request. The preparation and delivery of HPN is provided via an all Wales contract with a home care company. Patients are referred to the home care company by the Parenteral Nutrition Teams at University Hospital of Wales and Hope Hospital. (HPN) Page 13 of 19

4. Putting Things Right: Raising a Concern Whilst every effort has been made to ensure that decisions made under this policy are robust and appropriate for the patient group, it is acknowledged that there may be occasions when the patient or their representative are not happy with decisions made or the treatment provided. The patient or their representative should be guided by the clinician, or the member of NHS staff with whom the concern is raised, to the appropriate arrangements for management of their concern: When a patient or their representative is unhappy with the decision that the patient does not meet the criteria for treatment further information can be provided demonstrating exceptionality. The request will then be considered by the All Wales IPFR Panel. If the patient or their representative is not happy with the decision of the All Wales IPFR Panel the patient and/or their representative has a right to ask for this decision to be reviewed. The grounds for the review, which are detailed in the All Wales Policy: Making Decisions on Individual Patient Funding Requests (IPFR), must be clearly stated. The review should be undertaken, by the patient's Local Health Board; When a patient or their representative is unhappy with the care provided during the treatment or the clinical decision to withdraw treatment provided under this policy, the patient and/or their representative should be guided to the LHB for NHS Putting Things Right. For services provided outside NHS Wales the patient or their representative should be guided to the NHS Trust Concerns Procedure, with a copy of the concern being sent to WHSSC. (HPN) Page 14 of 19

5. Equality Impact and Assessment The Equality Impact Assessment (EQIA) process has been developed to help promote fair and equal treatment in the delivery of health services. It aims to enable Welsh Health Specialised Services Committee to identify and eliminate detrimental treatment caused by the adverse impact of health service policies upon groups and individuals for reasons of race, gender re-assignment, disability, sex, sexual orientation, age, religion and belief, marriage and civil partnership, pregnancy and maternity and language (welsh). This policy has been subjected to an Equality Impact Assessment. The Assessment demonstrates that the policy is robust and that there is no potential for discrimination or adverse impact. All opportunities to promote equality have been taken. (HPN) Page 15 of 19

Annex (i) Adult Referral Pathway Patient referred from Secondary Care Services to Intestinal Failure Service Patient admitted to Intestinal Failure Service/ HPN Regional Service Patient commenced on Parenteral Nutrition Patient trained in management of Parenteral Nutrition Patient discharged on Home Parenteral Nutrition Care Package (HPN) Page 16 of 19

Child Referral Pathway Patient referred from secondary care services to Paediatric Gastroenterology Patient admitted to Paediatric Gastroenterology service or alternative quaternary UK unit as agreed by gatekeeper Patient commenced on parenteral nutrition Patient / Parents trained in management of parenteral nutrition Patient discharge home on home parenteral nutrition care package (HPN) Page 17 of 19

Annex (ii) Checklist CP24 Home Administered Parenteral Nutrition (HPN) The following checklist should be completed and retained as evidence of policy compliance by the receiving centre. It is expected that this evidence will be provided at the point of invoicing by the receiving centre. i) Where the patient meets the criteria AND the procedure is included in the contract AND the referral is received by an agreed centre, the form should be completed and retained by the receiving centre for audit purposes. ii) The patient meets the criteria AND is received at an agreed centre, but the procedure is not included in the contract. The checklist must be completed and submitted to WHSSC for prior approval to treatment. iii) The patient meets the criteria but wishes to be referred to a non contracted provider. An Individual Patient Funding Request (IPFR) Form must be completed and submitted to WHSSC for consideration. iv) The patient does not meet criteria, but there is evidence of exceptionality. An Individual Patient Funding Request (IPFR) Form must be completed and submitted to WHSSC for consideration for treatment. (HPN) Page 18 of 19

To be completed by the referring gatekeeper or treating clinician The following checklist should be completed for all patients to whom the policy applies, before treatment, by the responsible clinician. Please complete the appropriate boxes: Patient NHS No: Patient is Welsh Resident Patient is English Resident Post Code GP Code: Patient meets following access criteria for treatment: Awaiting reconstructive surgery leading to restoration of gut continuity and function OR With irreversible intestinal failure (except patients who require short term feeding) Patient wishes to be referred to non-contracted provider An Individual Patient Funding Request (IPFR) must be completed and submitted to WHSSC for approval prior to treatment. The form must clearly demonstrate why funding should be provided as an exception. The form can be found at http://www.wales.nhs.uk/sites3/docopen.cfm?orgid=898&id=181455 Patient does not meet access criteria but is exceptional An Individual Patient Funding Request (IPFR) must be completed and submitted to WHSSC for approval prior to treatment. The form must clearly demonstrate why funding should be provided as an exception. The form can be found at http://www.wales.nhs.uk/sites3/docopen.cfm?orgid=898&id=181455 Yes No Name: Designation: Signature: Date: Authorised by TRM Gatekeeper Authorised by Patient Care Team? Authorised by agreed other? (Please state whom) Patient Care Team/IPFR TRM Reference number: Name (printed): Signature: Date: Yes No (HPN) Page 19 of 19