MEDIA INFORMATION from
BAPEN the British Association for Parenteral and Enteral Nutrition
Registered Charity No.1023927
Issued Tuesday 10 December 2002
INEQUALITIES IN POTENTIAL LIFE-SAVING NUTRITIONAL CARE
REVEALED IN REPORT PUBLISHED TODAY
Almost 3 times as many people in the Nottingham area are being given potentially life-saving and life-improving nutritional treatment (tube-feeding) as those living in the Scunthorpe area reveals a Report today, published by the charity BAPEN (British Association for Parenteral and Enteral Nutrition)(1).
"In the Trent region, only 151 patients per million of the population of Scunthorpe are accessing such clinical nutritional care at home, whilst 430 patients per million population who live in Nottingham receive it," declared Professor Marinos Elia, Editor of the British Artificial Nutrition Survey (BANS)(2) report for 2002, Trustee of BAPEN and Professor of Clinical Nutrition at Southampton's Institute of Human Nutrition.
Similar or larger variations have been reported in other regions; for example, data published previously reveals a 6-fold variation in the East Anglian region.
Does Scunthorpe have much lower or Nottingham much higher rates of cancer, intestinal failure and other diseases for which patients require clinical nutrition to survive and thrive?
"This is very unlikely," says Elia. "Both populations have similar incidence rates of the diseases and treatments which may result in the need for artificial nutrition support."
Data from previous BANS reports in 1998-2001 reveal even larger discrepancies in the numbers of patients receiving total parenteral nutrition (TPN)(3).
"The average number of patients receiving life saving TPN in England is 8 per million; but the range is from 0 patients to 36 patients per million," says Dr Barry Jones, Co-Editor of the BANS report and Consultant Gastroenterologist in Dudley. "In my own region, the West Midlands, it is only 4 per million."
"This compares with Scotland's 14 per million where a managed clinical network exists and has identified TPN patients systematically, and 14 per million in the north-west around one of two national intestinal failure centres(4). These two centres cannot cope with the demand and their waiting lists are lengthening."
Once again, this variable prevalence of use of parenteral nutrition is highly unlikely to be linked to rates of disease.
Does this inequity of access matter?
"Yes it does, as patients who cannot feed or absorb nutrients properly urgently require TPN and will die without it," says Dr Barry Jones. "Additionally, the quality of life of those who could be receiving enteral feeding, cancer patients for example, will be curtailed and may affect their life expectancy."
Because of the lack of specialist regional centres in England and highly variable levels of quality of service, those who do access this support are having to travel long distances.
Patient experience
Carolyn Wheatley, Chair of PINNT(5) and a TPN patient herself says: "Many patients are travelling hundreds of miles for both routine and emergency care - for instance when the feeding line becomes infected. If services closer to home are involved, these are often inadequate. Local staff may not be prepared to listen to us, the expert patients. And sometimes we do know best as we have been trained to deal with our feeding lines and potential problems. Many local medical and nursing staff do not have specialist knowledge in this field.
We know from surveys and collecting patients' views direct that there is an improvement in health status once parenteral nutrition or enteral nutrition is commenced - I know that from my own experience, but we also know that most of us have problems in the following months and years.
What such patients need is quality care and support close enough to home to make a positive difference to their everyday lives - and currently this does not happen."
Call to action
"It is vital that there is increased awareness of the potential value of these life-saving and life-enhancing nutritional therapies," says Chairman of the BANS Committee Professor Elia, "so that an appropriate infrastructure is developed and funded to ensure high quality care is available to all who need it. BAPEN and BANS believes that a vital first step is to ensure that Nutritional Support Teams, with agreed procedures, training and staffing levels, are established in every hospital so that more patients receive this care to the highest possible standards."
Copies of the BANS Report 2002 are available at a cost of £10 each from:
BAPEN,
Secure Hold Business Centre,
Studley Road,
Redditch,
Worcershire B98 7LG.
Log onto www.bapen.org.uk for more information.
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.
Professor Elia, Dr Barry Jones and Carolyn Wheatley are available for interview.
Notes
1. It is estimated that 20 - 25,000 adults and children are receiving home tube feeding at any point in time and that numbers are growing at approximately 20% year on year.
2. Patients starting home enteral tube feeding are doing so as a result of cancer (1 in 4 adults and 1 in 12 children with the vast majority being gastrointestinal malignancies), stroke, swallowing difficulties, Crohn's disease, gut dysfunction, surgical complications.
3. There are between 500 and 700 patients on home parenteral nutrition (intravenous) at any one time in the UK.
Reference
1. BAPEN is a registered charity. It is committed to advancing knowledge about and best practice in artificial nutrition support. Its membership is drawn from the fields of surgery, intensive care, gastroenterology, pharmacology, nursing, nutrition and dietetics.
2. BANS (British Artificial Nutrition Survey) is a standing committee of BAPEN and publishes a report annually based on an audit and research into nutritional care in hospitals and the community.
3. TPN - total parenteral nutrition - is delivered intravenously. Most patients on TPN take very little or nothing by mouth as their gut is unable to absorb enough or any nutrients. Some patients receive on a temporary basis to allow the gut to recover; for others this is a therapy for life.
4. The two national Intestinal Failure (IF) Units are based at Hope Hospital, Salford and St Mark's, Harrow. The number of referrals are going up year on year but there is no uniformity across the UK. Waiting lists are growing and deaths on the waiting list are rising. Patients treated at these two dedicated centers for intestinal failure have better outcomes.
5. PINNT (Patients on intravenous and naso-gastric nutritional treatment) is the charity and patient support group allied to BAPEN. It provides help via a network and practical advice on for example grants and holidays.