Your experiences of dietitians

Hi Ruth

My dietician was great but I feel a bit guilty saying that as I know that some of you have not had good experiences.  I would definitely agree that we need the same high standard throughout.  Eating well is crucial to our recovery and I don't think enough importance and resources are always given to it. 

My dietician spoke to me weekly.  I kept a food diary for her and she would suggest helpful ways to increase my calories.  She gave me recipe ideas, helped me plan menus and gave general tips.  I felt she understood my eating problems, which I think were psychological as well as physical, and she was a great provider of emotional support.

I had a far worse experience when I was discharged by this hospital dietician and my ongoing care was transferred to my GP surgery.  I was sent to an NHS healthy eating clinic where most of the patients were desperately trying to lose weight so they could have operations. There were a few with poor appetite like me.  We were all lectured by the dietician there on how we should be eating as if we were a group of naughty children.  What was not appreciated at all was that we understood that but for various complex reasons found it a challenge.  There were no suggestions or encouragement whatsoever, and we all ended up feeling it was a complete waste of time.

Wow - that sounds brilliant. You see, recipe ideas and mention planning is what I would have expected. (Not having explained to me what a tick or a cross means as if I were a two year old) ha ha ha.

I think nutrition is key to recovery but it seems the advice is very variable. I’m trying to get a Fulker picture of what people are being told.

I’m really pleased you got such good help at least from the dietitian if not the clinic. It’s interesting that you say you were treated like naughty children. We feel our dietitian is very condescending too - I wonder if it’s common for them to infantilise people - none of the other staff eh nurses, docs, SALTS do it! 

Menu planning! Damn predictive text!!!!!

My dietician didn't have the faintest idea how to help someone who didn't eat meat, dairy or sugar.  Her normal advice to people was to forget 'healthy' and fill yourself up with sugary and creamy foods, neither of which were possible for me.  In the end, after 45 minutes of frustrating conversation, we ended up agreeing that I knew far more about my diet than she did, that she couldn't actually help me, and that I would provide her with recipes that she could then share with other patients, as her training was too limited to be able to cope with someone who didn't fit her boxes.

The best help she provided was to find me a soya alternative to the normal dairy-based liquid foods, and this had less sugar (but therefore less calories too).

Also, neither she, the Macmillan nurse nor the SALT could see the point in what seemed to be very obvious to me - if patients are only going to get one appointment to discuss diet before their treatment starts, then it would be better to provide it as early as possible, so that the patient has chance to put on weight, get advice about healthy eating or whatever, with enough time for this to actually have some impact before they lose the ability to eat normally for months anyway.  She couldn't understand that people may actually want to do something to help themselves, and might like more than one week in which to do this.

Josie (A.K.A. Frustrated of Glastonbury)

Hi Josie

You make such a good point in your last paragraph.  It's crucial that support with eating is given as early as possible.  In my case I was a healthy weight when I first experienced symptoms.  After 10 weeks of all the worry whilst I was being diagnosed, and the removal of my tonsils with no advice whatsoever about how to eat afterwards, I lost well over a stone and was then considered underweight.  My Consultant was horrified on the day he confirmed my cancer when he saw how much weight I'd lost.  Perhaps that's why I got such good care as he phoned for a dietician immediately.  However if I'd had some help and support right from the beginning I don't think I would have ended up with the struggle that I had.  

Hi Josie,

Your experience is very similar to ours. Mike can't have dairy and although we are not veggie we minimise sugar and meat I noticed the leaflets and lists she hands out offer nothing for veggies. I think her training is limited to people who have dementia or who are extremely elderly. She treats us as if we are in these categories - which I insist we are not, yet! We have had a bit of laughter at some of her gems - you have to laugh or you would cry.

Agree we were given no useful advice ahead of treatment. 

I have offered to share recipes with her to help other patients but she has ignored me. I personally think monotony is a big challenge if you are on soft food for a time and sharing recipes would help. 

That's why it's so great to have people here sharing resources. That's great as self help but what are we paying dietitians for via the NHS if we have to do their job for them on the forum?!

t I am still at a loss what the dietiticians are actually trying to achieve? What value do  they add?

In our case, the advice is pitched at such a very low level that if you needed it, you probably couldn't understand it, if you see what I mean.

For instance, if you need a tick and a cross explaining, you most likely can't understand a leaflet. 

In our case, rather like yours, I feel we know more than she does and that she is unable to help us at all - and that this would be the case with any averagely functional adults.

But rather than admit this, as your dietitican did, she tries to pretend she is the great 'I am' and we are a pair of dunces - hence our hilarity, though there is real frustration underneath. She is a very nice person and means really well, just useless, unfortunately - and I keep thinking she would find her own job much more rewarding if she could actually help people. They would be grateful, she would feel good, virtuous circle. Though she claims (after I asked her) she has had special training in nutrition for head and neck patients, I see no evidence of this and think it may have been a couple of hours course or something, saying 'shepherd's pie! Milk shake!'

Oh dear, better get off before I go even more ranty-tastic....! 

It's not really helpful to the conversation, there have already been lots of sensible discussion so I feel comfortably adding something a little (lot?) frivolous.

My dietitian was actually the "separated at birth identical twin sister" of my first real love (1977) and I spent all the appointments with her just staring and thinking, "God you're beautiful" so took in very little of what she said. She may be the best dietitian in the history of the NHS or she might have been truly awful and I wouldn't have noticed ;-). 

She brought back some wonderful memories of a partner who remained an extremely close friend even after we grew apart romantically after a couple of years until she tragically died from MS at twenty-nine. So she was great!

Oh Mike, you have made me smile. What a lovely contribution.

Ruth xx

Dear Ruth,

OMG I know what you are talking about - the dietician involved with my care could smile very sweetly and I assume that’s why the NHS pay her, because it as the only useful (but also v annoying) thing she did in my weekly review meeting. Her advice was so useless and unhelpful I haven’t retained any of it - laughable suggestions, all of them. Hang on - I remember her advocating boil in the bag fish! Why? I’m perfectly capable of cooking a bit of fish and don’t need to purchase sanitised packets of stuff from a supermarket!

I would say that she was very much the weak link in an otherwise largely excellent team. Surely this situation could be improved.

In week 5 of 7 weeks radio she told me she had calculated my daily requirements as being 2000 calories and 80 grams of protein. Had it taken her 5 weeks to work this out? I expect it was a standard recommendation, not specific to me. But at least it confirmed the importance of calories and protein for the diet of someone undergoing RT, but I’d worked that myself by then! 

To be constructive:

1) I agree that dietary advice needs to start as soon after diagnosis as possible, not the appt before treatment starts. This would give time for planning and potentially weight gain before the rigours of treatment start.

2)Any patient having to have tonsillectomy (and other H&N surgery?)can expect to lose weight (I only lost half a stone, but others much more) - so they need excellent support BEFORE the surgery and to ensure that they lose the minimum.

3) It seems that Dieticians are not very flexible in their advice -one size fits all. Many of us find the advice unhelpful, if not insulting.

4)Post-treatment weeks and months are proving difficult on the eating front for me and for most I think, judging from this forum. There needs to be better advice on nutritional support during this period. Monotony is certainly a problem.

It would be great if we could feed these points back to a body of dieticians. Any ideas anyone? I have already given (detailed) feedback to my team, in as constructive way as possible. However, I was a bit easy on the dietician as I didn’t want to be personal! There must be a National Society of Dieticians. I’ll see what I can find out. They might be receptive to feedback from a group like us - they should be! We could be pretty helpful in pointing out deficiencies and making suggestions on how to improve the service. Nutrition is key for Head & Neck Cancer patients. We, and those coming after us deserve better. 

Can I say thank you to whoever suggested cooking finely chopped veg and adding eggs to scramble? Brilliant idea and a good way of getting veg down. Loved it!

My offering would be the great sweet potato - baked/boiled, whatever. Then mashed with butter it goes with everything and it is so much smoother in texture than the normal potato that it seems to lubricate the path of other foods as they go down!

Hilary

Yes. If the dietician did more than take my weight and give me Ensures and the speech and language therapist had not been so useless, I may have had my life back somewhat more. Its pot luck who you get to look after you in the NHS. If I'd had the people I had now from the start, I'm sure my life would be better. I'm angry.