Do you work with patients on Home Parenteral Nutrition (HPN)?
Would you like to be part of a new UK HPN Group?
The UKHPN Group is a new collaboration of adult and paediatric consultant gastroenterologists, clinical / nutrition nurse specialists, dietitians, pharmacists and patient representatives. Our aim is to form a recognised and trusted network which will foster national collaboration and research.
If anyone wants further information or would like to join, please email a.chambers@qmul.ac.uk
On 16th September 2005 Barts & The London organised and hosted a meeting on Home Parenteral Nutrition (HPN), chaired by Jeremy Powell-Tuck, Jon Shaffer and Simon Gabe . The theme of the meeting was quality of life in adults and children. It was attended by medical, dietetic, nursing and pharmacy representatives of Aberdeen Royal Infirmary, Addenbrookes NHS Trust, Barts & The London Trust, Booth Hall Children's Hospital, Bristol Royal Infirmary, Erasme University Hospital, Glenfield Hospital (Leicester), Great Ormond Street Hospital, Guy's & St Thomas Hospital, John Radcliffe Hospital, Ninewells Hospital & Medical School, PINNT, Queen's Medical Centre, Russells Hall Hospital, Salford Royal Hospitals NHS Trust, St Marks, University College London Hospitals NHS Trust, University Hospital of Wales.
Andre Van Gossum, fresh from organising the Brussels ESPEN, presented the latest European HAN data (2004) and highlighted significant changes in the primary diseases necessitating HPN and discussed intestinal transplantation and the role of the growing number of HPN centres with variable expertise. Alison Chambers reported generic longitudinal QoL results of a multi-centred UK trial of HPN patients. QoL significantly improved over the first 6 months. Telemedicine had no impact on QoL or hospital attendance in this population. Janet Baxter told us about her developing therapy-specific QoL tool for patients on HPN (HPN-QOL) and presented her progress so far. Barry Jones focused on the ethical and QoL dilemmas behind providing HPN to terminally ill cancer patients from his perspective as chair of BANS. Susan Hill disseminated the results of a study conducted at Great Ormond Street Hospital on the psycho-social concerns families with children on HPN; on the whole parents had a good understanding of the underlying illness, felt well trained and supported at home, but needed respite care and felt their family life was restricted. Susanne Wood, national vice-chair of NACC, talked of the power of patient autonomy and discussed areas for local development and the expert patient programme.
The day was planned allowing room for plenty of discussion, and ended with a strong vote to continue and develop the group, broadening it to those who were not present on this occasion. There was a general wish to bring it under the BAPEN banner. The meeting closed by offering its thanks to Calea for support.
Alison Chambers
Jeremy Powell-Tuck
Home Parenteral Nutrition in the United Kingdom
A Position Paper
Prepared by the British Association for Parenteral & Enteral Nutrition, 2003
Dr. Barry JM Jones BSc MD FRCP, Home Parenteral Nutrition Officer, BAPEN
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The leaflet below contains the complete paper.
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