This is not a complaint but an enquiry I hope might lead to improvement for all of us.
Our dietitian is very well meaning but sadly hasn’t helped us at all because all her advice is so ultra basic that anyone of average general knowledge and a bit of sense would know it already.
It would obviously be good for patients and carers -and a better use of NHS funds - if the dietitians were as helpful as possible with their input.
I’m wondering whether this is a common experience or we’ve just been a bit unlucky.
Have other people had good experiences with their dietitian and if so what did the dietitian do or say that was helpful?
What kind of advice and help would people like to receive from the dietitians?
(I asked ours if she had any recipe ideas as I find monotony with soft food a challenge and she reacted as if I’d asked her for the moon in a bag!)
I feel it is hard for individuals to give feedback because we don’t get a hearing and also it can seem
too personal against an individual dietitian when I suspect they are just part of a system that needs improvement.
I have used my journalistic contacts and gone through the PR dept of the BDA and had an initial response from the Press officer.
She says they do want to hear feedback from us and she is going to go and find out who is the best person there to hear it, and she will revert to me in the next few days.
I think it’s best to keep it to constructive suggestions eg earlier consultation, advice for veggies, better info on calorie requirements, recipe ideas. I think they’ll respond to that better than criticising them.
We can put together an email with our main points for them - I’m happy to collate it at the weekend and post it up so we can all see, and chime in.
This sounds like a great way of tackling the problems that this discussion has uncovered. I had no idea that the problems were so widespread, to be honest, and it seems to me that it would be potentially dangerous to allow them to continue along their current path when we have found it to be so inadequate.
By working and acting together we can show evidence of a much bigger issue than just the poor training, poor people skills or poor imagination of one particular person.
Thank you so much for picking it up and running with it; I know that this is a topic that is very close to your heart, and it is one where a very large difference in patient experience can be made with a few simple changes.
Absolutely right Ruth on the constructive suggestions front. They won’t respond well to non-specific whinging, but hopefully will be more receptive to a group of patients & carers who would like to improve the service. Clearly your comment has hit a nerve/galvanised the H&N cancer community as there have been so many posts in such a short time.
I would like to put in a word for Dieticians tailoring their advice better to each patient. The average patient is not stupid or unmotivated, but rather would like to have some control over terrible time in their lives. Good advice from a Dietician that is relevant to them - whether vegetarian, lactose intolerant etcetc, would be invaluable.
Great to have contacts Ruth! Thanks for getting the ball rolling.
Hilary
FormerMember
Hi Ruth
I don't really wish to complain about my dietician, who has been lovely, but if I'm honest I think the dieticians at my hospital are just glorified Nutricia/Fortisips sales reps!
The only advice I've had is to add cream to everything and eat lots of desserts. Basically "soft and high calorie", which is obvious to anyone with a brain cell, but no real menu/recipe advice, and nothing to help with getting a good, balanced diet.
As we've seen on other threads, there's a real gap in the market....
Yes Loempia, it’s interesting you say that - we have often wondered if they are paid by Nutricia and don’t actually work for the NHS. I asked one and she denied it.
I’ve met people from Nutricia though and they are really good, far more clued in and have more empathy than the dietitians. So that idea might be doing Nutricia a disservice!
I also wonder what training they have for H&N. My suspicion is most are trained in general oncology nutrition but not in H&N therefore have no clue of the complex issues involved.
Perhaps they don’t think we have half a brain cell! Maybe they think cancer makes you thick....so why bother with decent advice.....
I couldn't agree more. In my opinion, they are a total waste of space. The information they patronise us with is simple common sense.
Let's not forget they are not chefs and also have no experience of what we have to go through. As we know, everyone's experiences are different but even for a healthy person then suggesting a recipe is almost impossible. It really is a matter of trial and error and much experimenting. I am managing ok with :
Mash and Mince with Gravy - Try adding soft veg.
Mash and Corned Beef
Chili Con Carne (mild) and Rice - Sprinkle some grated cheese on top.
Ravioli
Pasta with sauce - Schwartz does a very tasty tuna pasta napolitan packet sauce which is easy to prepare and very nice. Available in most big supermarkets.
Omelet
Scrambled egg
It really is a matter of using one's imagination and trying stuff out. We don't need a dietician to help us with that. If you're ok with cheese then grate it and throw it on meals or add it to omelets, scrambled eggs or mash. It really is all quite simple
Bon Appetit
John
FormerMember
Well mine is a compliant. Dietitians are overpaid and a waste of time, I had a few, two at the cancer centre and one at the local Hospital. All were very unrealistic, uncaring and told me what anyone could find on the web. The local one was very condescending and was telling me that I should consider myself lucky that I could eat at all.
There you go, I think the health service would be better to spend the money on more mental health counsellors
I totally agree. I was never offered any psychological/mental councilling but I'm sure we all need that more than patronising dieticians telling us what we already know.
I'm just up the road in Othery. I feel your pain. I'm on my third bout of breast cancer and the NHS doctors are clueless about nutrition. The doctors I believe only have about 2 weeks training on it and the dieticians advice is based on outdated information. You can find better online. Have you found the natural nutrition sites thetruthaboutcancer.com, dr.axe and Chris beat cancer. I've found them very helpful. They all advocate sugar free and more. I also avoid cows milk and soya as I.have a hormonal cancer. I eat sheep's and goats milk, some fish to help rebuild my wasted muscles at the mo as I have been very seriously ill in bed for a month with no sleep at all on the steroids. A peculiar hell I would wish on none. All best wishes and love and healing light to all those on this path xxx
I have been following these diets alone since I was first diagnosed 3rd time in 2014 and had 15 months of normality. Also did healing meditations etc. Doc said this was a miracle. Rushed into hospital when this alone stopped working. Heart and lungs compromised. Fighting for my life for over a month. Could've died one of 4 ways apparently. Doc said this fact was a miracle. Also my recovery now. So used word 3 x and believe is he tells it like it is and petrified us over the past month and became known as Dr glass half empty! Now they are treating me as not dying imminently and probably surviving for a while so yes I really do think nutrition is so.important. it makes sense that what you put into an engine helps it perform! Eating healthy has literally saved my life more than once xx
