Navigating through the NHS
Last month John Scott asked if anyone had any advice on how to gain access to the specialist forms of food and feeding that may become necessary if food intolerances reduce one’s diet below a weight maintenance level. Pam Harris suggests a route you could follow
Having read John Scott’s plea in ‘Navigating through the NHS’, I will try to explain the procedure you need to follow if you are to have any hope of obtaining any form of supplemental or artificial nutrition. I say ‘any hope’ as, sadly, there are no guarantees that everyone will get it. My own mail bag would suggest that you are in a post code lottery - even assuming that you have managed to be referred to a gastroenterologist who specialises in food allergies or intestinal management. There are very few specialists in either field.
Step 1. Food Diary
This means listing everything that you eat and drink in detail, and the time that you eat or drink it. You need also to list your condition and symptoms 3-4 times during the day. The diary should be kept for 4-6 weeks and then repeated for another two weeks at least, omitting any foods to which you suspect you are allergic or intolerant, and noting any changes in your symptoms.
Step 2. Visit GP
If your symptoms persist, return, and return again. Repeated visits to your GP should result in your referral to either an allergy specialist or gastroenterologist at your local hospital.
Step 3. Referral to allergy specialist/gastroenterologist
If you are one of the unfortunate people who has multiple allergies and intolerances, you have severe weight loss, your intake of oral food is so limited that you are becoming malnourished and the ongoing care at your local hospital is not addressing your situation, then you are likely to be prescribed an elemental, peptide or other oral food supplement.
This type of food supplement feeding does give you the complete nourishment that your body needs and will also bring your weight up to a normal level. It does not restrict your lifestyle in any way other than denying you normal oral eating. Each tin of feed is expensive but it is the most pleasant way of maintaining dietary nutrition. It does not work for everyone as the nature of the underlying condition has to be taken into consideration.
Step 4. Referral to teaching hospital
Even if the result is in your favour, your local health authority has to accept the financial responsibility for your treatment and ongoing care after you have left the hospital. If they do, you will remain under the clinical care of the teaching hospital, but will also have the additional care of a home-care support team. They will be there for you at all times and be responsible for delivering your food and ancilliaries. It is the financial responsibilty for this team and for the nutritional food itself which your local council has to assume. But the cost is extremely high and some local health councils have been unable to accept the responsibilty.
Step 5. Trouble-shooting
If you find yourself facing a total brick wall, book an appointment at your MP’s surgery and ask why, in view of the government’s latest policies on choice of hospitals for treatment, you are being denied an appointment to see a specialist for diagnosis and treatment.
First published in 2005