MEDIA INFORMATION from
BAPEN the British Association for Parenteral and Enteral Nutrition
Registered Charity No.1023927
Issued 2nd September 2002
"WHERE SCOTLAND LEADS, ENGLAND SHOULD FOLLOW"
Equity of access for patients in England on Home Parenteral Nutrition essential(1)(2)
Dr Barry Jones, member of BAPEN Council, will, in the inaugural Pennington Lecture at the BAPEN Symposium (Wed 4 September, SECC, Glasgow)(3)(4), throw down the gauntlet to the Department of Health in England and the government to follow the lead set in Scotland regarding the management of patients receiving Home Parenteral Nutrition (HPN).
"In Scotland, a Managed Clinical Network(5) has been established, which means that all patients receiving HPN are cared for under common protocols. The need is picked up in all patients and they are treated the same," declares Dr Jones. "A similar service is now being set up in Wales."
"This is not happening in England," he continues. "Here on-going treatment is currently provided from only two nationally funded Intestinal Failure Units (IFUs) in Harrow and Salford, and a number of other unfunded centres. This means that many patients have to travel hundreds of miles in a round trip to the hospital for routine appointments and follow-up."
Additionally, there are severe concerns over equity of access.
At the two England centres for IF, HPN related readmissions of existing patients have displaced those awaiting admission for initial IF treatment. This has resulted in longer waiting lists and for some death before treatment becomes available.
Waiting list mortality at one IF centre has risen to 14%.
Dr Jones added: "Another worry is that the number of patients recorded as receiving HPN varies widely between health authorities - from 0 to 36 per million - suggesting that many who need HPN are not receiving it. Additionally, where services are currently being provided locally, the levels of expertise, experience and resources available are very variable. This is a cause for concern. Investment in training and resources is vital."
"The Department of Health has now agreed to set up a 'subnational HPN service' separate from IF provision, which is progress. However, if existing HPN units are to take more patients to ease the burden on the two main centres, and new locally based services established - which is what patients want - then resources must be made available for training, resources and accreditation. BAPEN is ready to play its part in this vital exercise. Currently many patients do not get the service they need or should expect. HPN is a specialized life-saving treatment. It is not optional; it is vital and must be made available to all who need it to the highest possible standards."
Notes:
1. Home Parenteral Nutrition (HPN) - Patients on HPN are receiving total artificial nutrition support via a tube delivering nutrients direct into the bloodstream. About 500 patients at any one time receive HPN, 70 in Scotland, with approximately 10% being children. The age distribution peaks at 40 - 60 years of age. Most HPN patients live at home, the vast majority with good quality of life and are able to take part in many activities for daily living.
2. More than 17,500 patients in the UK are receiving artificial nutrition support at any one time, either through enteral nutrition (fed via a tube into the stomach or lower digestive tract) or parenteral nutrition (directly into the bloodstream - see above).
3. BAPEN the British Association for Parenteral and Enteral Nutrition is a multi-professional association and registered charity committed to improving clinical practice with regard to nutrition and nutritional treatment and to improving outcomes for patients. Through its multi professional membership - physicians, gastroenterologists, pharmacists, anaesthetists, researchers, patients, nurses, nutritionists and dietitians - it encourages wide ranging dialogue, exchange and interaction. BAPEN offers members a newsletter, website, regional activities, national meetings and publications. Log onto www.bapen.org.uk
4. The BAPEN Symposium 'Intestinal Failure' is being held on Wednesday 4 September, the last day of the ESPEN (European Society for Parenteral and Enteral Nutrition) meeting at the Scottish Exhibition & Conference Centre, Glasgow (31 August to 4 September). The symposium is being chaired by Professor Agostino Pierro, Chairman of the Clinical Nutrition and Metabolism Group of BAPEN.
5. The Managed Clinical Network in Scotland for HPN was launched in November 2000 with a clinical co-ordinator appointed in March 2001. It is focused on service provision, staffed by people with expertise, and acts as a focal point for advice and information. The Clinical Standards Board for Scotland sets standards and accredits centres, ensuring good and maintained levels of service. The late Professor Chris Pennington in whose memory Dr Barry Jones lecture at the BAPEN Symposium is being delivered, was instrumental in setting up the Network.
Dr Barry Jones, member of BAPEN Council, is available for interview as are patients with experience of HPN and health professionals involved in the Scottish service and English IF units. Call Rhonda Smith to arrange access.
For further information, please contact:
Rhonda Smith - e-mail at rsmith@gciuk.com or
Nicky Parnell 020-7072 4171. e-mail at nparnell@gciuk.com.
Out of hours alternative number 01264-710428.