Ensure and the NHS

Hi Fulham. Just wanted to extend a welcome. I can’t quite understand what you will be prescribed via PEG. Ensure? Seems crazy 

Can you go back to your oncology department at the hospital you were treated? After all, we are never discharged. 
I have a friend who pulverises all her food with a vitamix. She has had a diet worked out by a private dietician and she is thriving and looking brilliant. 
I hope you can find an answer 

Do let us know how you get on. 

Fulham P said:

Slightly off topic but great blog by the way!   Thanks again for taking the time to respond. :-)

Ah…. Thankyou. 
I am amazed a supposedly properly trained AHP can advise you in that way. 
There are plenty of people permanently on ensures by PEG. What you are managing to do must surely be better. 
I’m trying to think who else can fight your corner. 
Maybe you could try contacting The Swallows charity. 

https://theswallows.org.uk/

They might be able to add fuel to your fire

Fulham P said:

So many must slip through the net.

That’s spot on. So many people here are finding that they have to be aggressively proactive to get what they need especially pre diagnosis and post treatment when wrap around care falls off a cliff. 
Patients asking here are already proactive regarding their care but many many people just end up lost in the system. 

PS

You say you know your way round the NHS so start with your Clinical Commissioning Group responsible for the planning and commissioning of health care services for their local area.

Hi. I had similar issues but was  2 week out of treatment. I ended up involving my oncologist and contacted the clinical commission group who both acted swiftly. It was a matter of cost the bean counters at my g p practise decided I was too expensive for their budget and prescribed me aymes which at 500 mil for 125 calories nothing like the ensures 2 kal at 125 mil for 300 calories. As you know when swallow is hard in those early days drinking 3 times as much for half the calories was too going to happen. 
Im so sorry you’re going through this it’s so unfair seems like head and neck cancer patients are way down the list of priorities.

As Dani has  said a lady who was in here is using a vita-mix blender with excellent results she’s peg fed so it has to be thin might be worth having as a thought. A normal blender just doesn’t get it right. 
Sorry I had to smile at the cheese scone scenario. week 3 of treatment  my dietician said why do nt I try fish fingers chips and beans !!! As my husband said ti her A she’s not 5

B What part don’t you gets she can’t swallow !as she’s having chemo radiotherapy for tonsil cancer ! 

hugs Hazel 

Good evening Fulham P, im PEG dependent and use Ensure as my food supplement, i can swallow thin liquids like tea, coffee etc but not Ensures as my swallow is not very good due to damage from previous operations. It does seem unfair to you as you are trying to make your diet a bit more appetizing. I wish you luck in getting this issue sorted out, all the best. 

                                                                                                  Chris x

Hi Fulham

You have done well over the past 10 years maintaining your weight under difficult circumstances. A change is so unsettling and the lack of understanding of your speech pathologist is not helping.

I am sorry to hear of your plight. It seems the NHS are not thinking things through and not taking into account those who are dependent on Ensure to maintain their calories. Have they suggested any other supplement as an alternative that they will fund? I have had several different ones over the past couple of years and have found they all seem to have almost the same amount of calories. Because of cost (in Australia we have to buy our own supplements as they are only prescribed short term) I changed to Sustagen that I can buy over the counter at the chemists. I also bought a Vitamix blender and pulverise fruit, veg etc to a puree so get a good balanced diet that way. Sounds as though you are doing something similar.

I am fortunate as I have just been able to upgrade my diet after a jaw reconstruction op but am still reliant on Fortisip to help maintain the calories. (had a change to my finances so am now able to afford the Fortisip)

Can you look outside the box and do a problem solve so that if the worst comes to the worst you can come up with an alternative to help you maintain your weight ? You have already been very innovative and I'm sure you will be able to find something that works for you. It's just so disappointing though that others in the medical system are not that helpful. I have found that I have had to work out a lot around diet myself to find what works best for me.

I do hope you get a quick resolution.

Lyn

Morning Fulham

I am RIG dependand, unfortately i'm not familiar with Ensure, I have feed from a company called Fresenius Kabi, who supply everything i need, once a month, it maybe worth asking your dietitan about them.

You said that you found PEG feeding noisy, the machines may have changed since you had one and maybe alot quieter now, i also feed at night and don't find it a problem with the noise.

I can understand your reluctance going back to tube feeding, i've had so many problems with mine, but 90% of my problems are down to the fault of the surgeon that fitted it. They are a pain having them and a work up, but it's what is keeping me alive, so i put up with it.

I am lucky enough to be able to eat very small amounts of curtain soft foods cut into little pieces, so i know how much you would miss being able to blend your veg etc. The feed from Kabi doesn't smell nice and i wouldn't like to blend it with anything, maybe there is something else you could use instead. 

Good luck, i hope all works out for you.

Cat x