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
For anyone setting out on this path I would recommend that you keep a 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
Then book an appointment with your GP - and take your diary with you. Your GP will probably say that he/she hasn't got time to read it but may well give you a prescription for one of the drugs that can help - in some cases. I would suggest that you ask, at this first appointment, if you could be referred to a dietitian. She (or very occasionally he) will be more likely to read your diary and will probably suggest you continue to keep it. (I would advise you to do so anyway.)
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
Once you get a referral, skin prick tests will probably be carried out which will give an indication as to whether it is allergy or intolerance. If you have an allergic reaction when tested then you will be advised to completely avoid the food to prevent a serious reaction. If food intolerance is suspected you will be given advice, possibly medication and continuing guidance from your dietitian.
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
However, an oral food supplement is probably the best that your local hospital will be able to offer, so, if you are one of those for whom elemental feeds do not work, you have the right to ask for referral to a consultant at a teaching hospital who specialises in intestinal malfunction and management. Under the care of such a specialist, you will be more likely to be assessed to see if you are suitable for an alternative form of feeding. Unfortunately, not everyone is.
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
Even if your GP or specialist is thoroughly unhelpful, do not forget that you do have rights. Under the Patient’s Charter you can not only ask for a referral to an allergy specialist but, if you are not making progress with the consultant you are seeing, you can ask also for a second opinion from another consultant, or a referral to a teaching hospital.
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.
