Pam Harris looks at a gastroenterological speciality which could be a life-saver for those like John Scott, who genuinely cannot tolerate any normal foods at all
I am sure that most of you who have read John Scott's or Sam Bailey’s stories were deeply shocked. I wish I had been too, but, sadly, I have seen many cases of total food allergy among both adults and children. I do understand that ambitious medical researchers are often reluctant to investigate what up until now has been, as John Scott describes it, an obscure medical backwater. This is partly because it is almost impossible to get funding for such research, and partly because it is unlikely to gain them the recognition they need if they are to advance their careers. Let us hope that the recent Health Committee finding that some 11 million people in this country are suffering health problems believed to be related to food or chemical allergy may raise awareness of the problem, encourage health practitioners to seek further allergy education and encourage the government to pay for it.
This would have the added benefit that patients would no longer need to seek help from unqualified practitioners whose findings and advice may not be in those patients’ best interests. The medical procedures needed to identify allergies and intolerances accurately are time-consuming but safe, and subsequent treatment will avoid further complicating an existing health problem with an unbalanced or nutritionally inadequate diet.
OK - but where do we go from here?
Medical conditions in which either temporary or permanent ANS would be appropriate:
Although ANS is often only a temporary measure until a satisfactory nutrient status is reached or a relevant digestive organ has healed, there is a substantial body of people for whom ANS is part of everyday life, as it is their only way of receiving the nutrition necessary for the normal functioning of their bodies.
ANS is normally delivered in one of two ways:
Enteral feeding is the preferred method as it is cheaper, safer and more physiological than parenteral feeding (see below). The intestine has an important immune and barrier function.
All forms of delivery are invasive and are not, therefore, risk-free. Infection is the greatest hazard (especially in patients whose immune functions are already impaired), so all procedures must be aseptic and the patient needs to be constantly and carefully monitored. Because of the ‘unnatural’ way in which nutrition is being delivered, the functions of other organs, such as the liver, also need to be carefully monitored. However, having said that, many people use these forms of nutrition at home, either to give them extra nutritional support or to provide their total nutrition. Indeed many have their nutrition fed to them during the night and are able to go to work and live perfectly normal lives during the day.
Exactly what goes into the feed (which comes as a thick liquid and has already been pre-digested so that it can be easily absorbed) will depend on the needs of each individual patient. Although there is a basic nutritional mix, it will normally be adjusted according to whether the patient can absorb any nutrients from normal foods and what their specific nutritional requirements may be.
So why are there so many people with severe food sensitivity difficulties suffering on, unaware that there may be help for them that could change their lives?
As you will realise, ANS is not only inherently somewhat risky, it is also very expensive. One day’s worth of parenteral nutrition costs over £60 - and that is not including any of the substantial medical back-up service which is obviously essential. Funding is also complicated by the fact that hospital patients on ANS are paid for by the hospital, but as soon as they go home financial responsibility passes to their local health care trusts - which have to be persuaded to take it on. Moreover, this is a highly specialised technique only performed by a small number of gastroenterology units, so relatively few hospitals or trusts know very much about it.
In this country work has been pioneered at Ninewells Hospital in Scotland from where consultants have gradually been fanning out to other hospitals to set up specialist units. Ninewells sees itself as the hub at the centre of what it hopes will be spokes extending all over the country. Interestingly, while ANS remains an even more obscure branch of medicine than allergy in this country, in the USA there are well over half a million people, both children and adults, who are using it daily to substantially improve their quality of life.
We are, at the moment, in the process of setting up a charity, The Nightingale Trust for Nutritional Support, to promote the use and understanding of Artificial Nutrition. If you would like to know more about ANS or the charity, please e-mail or write to me about it: firstname.lastname@example.org or Pam Harris, 3 Ashfield, Deeping St James Road, Deeping Gate, Peterborough PE6 9AL
You could also consult PINNT (Patients on Intravenous and Nasogastric Nutrition Therapy) at www.pinnt.co.uk or PO Box 3126, Christchurch, Dorset BH23 2XS, which has lots of support information - including support for children on NAS - the Half Pinnt!
You could also take a look at BAPEN (The British Association for Perenteral and Enteral Nutrition) - www.bapen.org.uk Although this is primarily a professional organisation they do have a helpful question and answer section on their site (click on ‘Activities’, then on ‘Litre’, then on ‘Dear Litre’).
First published in 2005