Consistency of prescribing 'nutritional supplements' after Head and Neck Cancer

Yes I was told the same by one of the GP's at the practice and my dietitian said that as my weight was stable she wouldn't be able to push for it. You can buy Complan if that's what you have.

I still get my complans on prescription more than five years on and it's never been questioned, seems a silly rule to me.

Hi Alichap. Just a thought -I have seen  a letter written by an Oncology consultant supporting a patients need for something. Might have been particular drug or possibly for a benefit. Whatever  - it was a pretty strong letter stating why the drug/financial support was absolutely required. I cant say if the person got the request but it was powerfully put across. As your husband's situation is a little different ie he hasnt lost weight yet but could well do so if he doesn't have the supplements, it might do the trick. Worth asking surgeon or Oncologist to support his request/need for exceptional circumstances?

Hi Alichapp, it sounds a bit silly to do this and mess with a patients food intake maybe they have made an error by someone who is not medically qualified but a person who sits behind a desk finding ways to save money . It is a good idea to get your husbands consultant and dietician to investigate further , its bad enough going through the cancer journey , I just wish these decision makers take this into account . I have not come across this problem before but have heard of people chucking foods supplements away because they are no longer required by the patient because it cannot be sent back .Hopefully the "people in the know "can help you out . Best wishes .

                                                                                              Chris . x

I know different regions have different rules, a friend dosent get any and struggles to keep weight on.   Does your husband have any other medical condition? Type two diabetes was what stoped them changing my husbands to the cheeper version  when he was struggling with his supplements his blood glucose went all other the place. It was  stable on the  Fortisips. Hope  it works out ok. Regarding work lunch break should he not get a reasonable adjustment  as he should be protected under the equality/disability type regulations? 

He doesn't have any other medical conditions, although he was pre-diabetic before his cancer treatment and now his bloods are well within normal levels. We think this is due to him getting most of his calories now from fat rather than from carbohydrates, as he was very slim anyway before the cancer - there is a strong genetic predisposition to late-onset diabetes in his family in the male line. So the supplements are probably helping with this, being high-fat.

Regarding work, it is one of these environments where people tend to eat at the desk, so regardless of how long the lunch break officially is, it is difficult for him to take a proper break and focus on a meal. He works very long hours, and does not want to have to make the day even longer by spending 90 minutes on lunch. He would also be very embarrassed, as he worries about looking bad when he eats.The speed and inconspicuousness of being able to consume the supplements works very well for him.

To be honest, I think our health authority has really missed the point, by categorising these things just as 'supplements' for people who have lost a load of weight or are recovering from an illness. There seems to be no recognition that some people just can't eat normally, even though they are not 'invalids' - Paul is very active and needs a normal amount of calories in the day. Subsisting on a cup-a-soup, which is probably the best he could get at work, is not really a viable option! The pharmacist said they are no longer able to prescribe gluten free foods either, but that seems a bit different as you can easily buy gluten free foods in the shops now.

Oh well, at the end of the day Paul is still here, and doing ok, and I am very grateful to the NHS for that!

I still cannot understand this situation Alichapp , I know im peg dependant but im now changing my food supplement from Ensure to Aymes which is in powder form and you mix with water or milk . The main reason for changing is because in trying to reduce my peg usage but to do this I need a far less sugary and thick liquid , this is where Aymes have helped . It just seems weird that I can pick and choose what I take yet your husband is being denied. Perhaps its also because he works while im unable to so maybe they think you can afford to buy the supplements ,even though they are very expensive . It just seems so unfair to me , we are all grateful to the N.H.S  as without them I would not be here but you should not be neglected or punished for having had cancer . I hope you mange to sort something out , good luck to you both ,take care .

                                                                               Chris x

Hi, only just seen this. Just a thought. I have surplus fortisips which I no longer require. I’ve been loathe to dispose of them as it’s such a waste. We live in Stourbridge. So assume not so far from you. You’d be welcome to them. 

Hi Salbrist, I would love to take them off you as he will definitely use them and much better than throwing them away. I work full time, but sometimes from home and could maybe plan a quick excursion to Stourbridge - or come at a weekend. What sort of availability do you have? 

That would be no problem. I also work but if you let me know times I can sort something out. We are usually around on a weekend though. Do you want to send me your email address so we can sort out times etc.