Hi everyone, please visit our new look community site and let us know what you think. If you have any problems with the new site, you can still switch back to the current community site.
I'm new to the forum and I'm just after anyones experience of GPs prescibing Ensure drinks to cancer patients.
My nan (who is 77) had bladder cancer 4 years ago and had radical surgery to remove her bladder and surrounding reproductive organs. The operation inititally seemed to have been a success but last year she was diagnosed with metastatic bladder cancer that had gone to her lungs...
She had some radiotherapy last year but has been told that the cancer is terminal.
Day to day she has been doing OK (considering) but has been being prescribed Ensure drinks for the last six months to supplement her diet as her appetite is quite poor.
This week the doctor has said she can no longer prescribe the drinks (due to budget cuts) and my Nan will have to buy them from the chemists at a cost of nearly £3 each! As she has at least 1 a day this is a cost of at least £90 a month straight away.
My Nan is quite upset about this and plans to speak to the doctor again next week (as she feels the drinks really help her), and I have just done some research online for her (including on this site) and it appears normal to encourage patients with a dwindling appetite to have the drinks to increase their nutritional intake and everything I have foundsays that they should be precribed if they are needed as they are so expensive - so i'm a bit lost as to why the GP has said they can no longer be prescribed.
Has anyone else had this problem?
We had the same problem with my dads GP who told me 'he couldn't possibly supply Ensure as it wasn't in his policies and guidelines!!!' I spoke to the district nurse and then his oncologist who was the one who prescribed them, he was furious! After several heated discussions with the GP he eventually did a prescription, when families are under pressure with the dreaded C you do not need to be fighting GP's! When I then went to Boots to pick it upm the pharmacist told me that they have several patients who they deliver hundreds to each month and a huge amount get wasted as they don't like all the flavours!!
Go over your GP's head if necessary, they are all too worried about money and have lost sight of the real job they are paid to do!!
Cant understand why G.P will not prescribe. If your mum ends up in hospital due to poor nutrion the cost of care wil be much higher. If she has a mac nurse get them involved they can put pressure on G.P.
My mum could not eat solids so lived on build up drinks I know her case may differ because the radioth caused the problem. She did however get them prescribed as well as peg feed supplied. If you have more than one G.P in your practice see another they will probably prescribe..
You and your nan should not be placed in this predicament. My partner was prescribed fortis sip supplements when he was having treatment. Does your nan have a Macmillan nurse if so get them to fight for you. We had a referral to a district nurse when he was needing help managing his sickness after chemo and they were great--so does your nan have a district nurse. I found that it is hard work and you have to be persistent but in the end you find the right person to help you and it all falls into place. So don't give up .
It is awful really how some GPS think..
If it helps I did do some calculations last week as I was trying to think of ways to build up my dad until the doctor actually mentioned the ensure drinks you mentioned a couple days ago.
Slimfast ( yes I know seems weird but it is a meal replacement) make up with full fat milk works out to be the same calories as Ensure. You can also add some evaporated milk to increase it even more.
Sainsbury are doing the tins for £2.98 just now and you have to add the milk but it makes 12 drinks. I know it is not what you want to do but I thought I would offer this as an option as I was doing it myself last week.
All the best x
My hubby needs 'fortisip' for recovery, vanilla flavoured as that is the only one he likes! The GP won't prescribe but will supply an alternative which he doesnt want. However, he is very lucky to be at The Marsden, Sutton and they will prescribe it whenever he needs it. I would suggest you all try your hospitals... though I realise The Marsden is special. Why is it all about money??
we are also on the drinks you mentioned, as you say they have great whilst we go through chemotherapy to help support appetite. Our GP has been great , so have no problems, don't understand why your GP is saying this, definitely worth fighting it , suggest you get your macmillan nurse involved.
We have 7 of the Ensure drinks in the fridge , we only got them 2 weeks ago so if anyone wants them I would happily post them. If I hand them back in to the chemist they will go in the bin sadly.
We were advised by the our GP receptionist that Fortisip and Fortijuice have now been removed from the list of things our PCT will supply because of cost and that patients are going to have to make do with Complan which is an entirely different product and only comes in two flavours. However, she says they've also been told that for cancer patients, if they kick up a fuss they are to be prescribed it again because the PCT can't be bothered with lawsuits or articles in the local paper about how they're starving cancer patients of vital nutritional intake while building swanky new offices in two local towns. My advice would be if your GP stops prescribing it, start shouting and kicking up because you may well get it back again.
Just thought I would update you all -
I wrote a letter of complaint to my Nan's GP and pointed out how important the drinks are and that she was entitled to them on prescription (and entitled to free prescriptions), and that if it was a cost-saving exercise it would cost the NHS much more if she were to be hospitalised due to mulnutrition.
The GP immediately relented, has gone back to prescribing the drinks and has now gone the other way and told my nan she can have whatever she wants! (The GP has even upped how many drinks she prescribes at a time and done a home visit to check how my nan is and have a cup of tea to apologise).
So, a good result for my Nan, which I am really pleased about!
I am worried by the fact that some people wouldn't complain though (or don't have relaties to complain on their behalf) as it seems to be that if you make a fuss they prescribe and if you don't, they dont!
hi nat, i do sympathise , what is it with drs and surgeries these days ?
slightly differant set of problems, but my hubby had tonsil cancer and by the 3rd week of chemo/radiotherapy he couldn't eat due to the damage done to his throat and was totally dependant on resource drinks which i fed him through his peg, at the time i was chasing drs and chemists weekly , as well as daily back and forth to hospital, and being the only carer 24/7, when our district nurse asked the surgery to increase the amount on prescription the RECEPTIONIST said they didn't want me to stockpile the drinks grrrr .
i eventually had the prescription increased to 144 bottles per fortnight , which lasted around the 2 week period,
if you have no joy with the gp i would suggest you contact your nans oncologist, or macmillan nurse, or even the dieticians at her hospital
your nan needs them to suppliment her diet, and keep her strength up as much as possible, she shouldn't have to buy them, hubby has just said contact your local mp and try to get them to work on your nans behalf.
good luck, keep us all informed how you get on linmad1
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2015
what are these?