Posts tagged 'Fortisips'

Too many cooks

Posted by on October 19th 2019 in Health, or lack thereof, Just for fun

Way back in April the hospital dietician put me on Fortisip Compact Protein liquid to slow down my weight loss. I have been kept on them to aid my efforts to get my weight back up to the agreed target of 70kg. They were specified by my hospital dietitian to the exclusion of any other similar product. Acquiring them has been, and continues to be, a process fraught with unnecessary obstructions.

For starters, when my TTO supply (those that the hospital gave me to take home) was running low, the prescription from the GP's surgery, which was were supposed to take on the repeat supply element, wasn't in place. Then, when a prescription was issued, the receiving pharmacy cocked-up the quantity. Also, it took a week or two more for the GP's staff to get around to specifying the preferred flavour (banana) on the prescription, and when they eventually did so it was a travesty of SPaG:

Then it went awry again - a couple of weeks later I went to the pharmacy to collect some other meds that I'd requested on prescription to find that they also had 56 more bottles of Fortisip ready for me, which I didn't yet need and so hadn't requested. One walk to the pharmacy and back became three walks, and our house was infested with little plastic bottles.

Fast-forward a few weeks to a review by the hospital's dietitian. It was agreed that I would introduce a little variation into the game - instead of having only the banana variant, I would move to a 50/50 split of banana and strawberry. The dietitian sent a letter to that effect to my GP's surgery and that was summarily ignored. It took a further three weeks and a stern call to my GP's surgery from my dietitian for that change to make its way onto my online meds request, When amended, it still said "(Flavour Not Specified)" but the second line was updated to "(bannana and strawberry only please)". Pick the bones out of that!

When the change was in place I went online and raised a request. Three working days later I went to the pharmacy to collect... they'd got the strawberry ones but not the banana ones. I had to wait a few more days for those.

The next time I requested them, all went well, everything was ready at the same time and I thought that the problems were behind us.

I was wrong.

On Wednesday last I saw the hospital dietitian again, we discussed my diet and my weight-gain, and she told me to continue taking the Fortisips. The next day I went online to request the next batch only to find myself stymied. Without consulting me, or my dietitian, or anyone at the hospital, on the Tuesday a pharmacist (not a doctor) at my GP's surgery had unilaterally removed the listing for Fortisips and had replaced it with a listing for Ensure Plus Advance liquid. No flavours have been specified:

Just to add insult to injury, the Ensure Plus Advance liquid webpage says Ensure Plus Advance is... formulated specifically for patients aged 65 years and over. FFS, I'm only 57!

I was furious. I emailed my dietitian for advice but I'm yet to receive a reply.

And today I received a letter from my GP's surgery. It states that this change was imposed after taking into account a review of my notes, which is a barmy notion tantamount to a lie, as the surgery has told me time and time again that they have no access whatsoever to my hospital notes, which are the ones that count, as my condition was, is, and will continue to be managed by the hospital haematology team for the rest of my life.

I also noted that the letter's footnote states "This service is funded by Abbott" who, by strange coincidence, are the makers of said Ensure Plus Advance liquid. And they are the authors of the two enclosed glossy advice leaflets.

The surgery's letter also states that they need to see me to regularly check my weight, and that I need to make a telephone appointment with a GP or GP registrar to make sure that I'm on the best management plan.

Well, no, that won't happen. Me and the hospital haematology team are in charge of my management plan, and I get weighed and see the dietitian every time I attend a consultation (currently that's once a week). We had everything under control until another cook decided to spoil the broth.

Needless to say, I'll be having stern words with someone next week. And I'll probably be telling them how to spell "banana".

As a post-script, I'll just add that I'm not too confident that the childhood vaccination process will go according to plan... the consultant haematologist told me that they send a detailed prescription letter to my GP's surgery... need I say more?

Mayday! Mayday!

Posted by on April 13th 2019 in Health, or lack thereof, Just for fun

The game's afoot... a suitable, willing and generous MUD (Matched Unrelated Donor) has been found and a date has been set for my Stem Cell Transplant. I'm told that the HLA "match" between me and my MUD is 10/10. I've also been told that my MUD is male, 24 years old, living in the UK and that we have different blood groups (he's B Positive, I'm O Positive).

On Tuesday 9th April I attended the "work-up" appointment where I was checked over and when the conditioning and SCT processes were described in great detail. To quote the Red Team consultants, the whole process had been "planned to within an inch of my life".

Well, within seconds I'd found a gaping wound in the plan, which had me attending Hambleton Suite on April 22nd for a Hickman Line insertion swiftly followed by admission to the BMTU for the start of conditioning chemo. Odd looks were exchanged when I asked if Hambleton Suite would be open for business on Easter Monday. As I suspected, based on my experience of Bank Holiday closures in 2016, the Suite will be closed for the Easter Monday Bank Holiday.

The knee-jerk reaction was to have me attend Day Ward on Easter Monday to have a temporary cannula inserted for the first day of chemo. I vetoed that immediately - I'm not the easiest person to cannulate and I've seen the damage that can be done when chemotherapy drugs leak from a poorly-located cannula.

Suffice to say that their latest plan has both the Hickman Line insertion and the start of chemo scheduled for Tuesday April 23rd. Yes, that's St. George's Day - not a Bank Holiday here in England despite many a campaign. But at least the Hambleton calendar now has Easter pencilled in. I wonder how many other clinic appointments they have had to change due to the oversight of something that has been a calculable date for nigh-on two millennia.

Oh, and some of my "few days of respite at home before kick-off" have been claimed back by the NHS - I'm to attend Glenfield Hospital on Tuesday 16th April to have my heart function checked, and again on Wednesday 17th April to have my lungs checked (yes, I cut them some slack regarding the bronchoscopy - now they owe me). Sometime before Easter I should have a breathing test and another bone marrow aspiration but so far there's been no word as to when they will be. I reckon they'll be out of time before I'm out of breath.

Anyway, the rest of the plan seems OK to me. I will be on the "FluBu" conditioning regime... Fludarabine 23rd - 28th April (was 22nd - 27th April), Busulfan 23rd - 25th April, Clonazepam 21st - 28th April, Thymoglobuline 25th - 30th April, Stem Cell Transplant on 1st May.

It's a good job I don't fast during Lent - starting on Tuesday 9th April I'm supposed to be getting through two of these bottles every day for at least a month:

 

Forty Fortisips