That’s really frustrating for you. I think if you want those questions answered a formal complaint might be your only option otherwise those unanswered questions will drive you crazy.
Have a think and do what’s best for you X
@Nichola75 I’m making some progress with PALS. They came back and said they were trying to clarify whether I wanted to make a formal complaint or wanted an informal response. I’ve told them I’m happy to proceed with informal for now, but that if I don’t get a satisfactory response I may escalate.
In the meantime, the “follow-up” Haematology appointment which I received yesterday and was scheduled for 19th March (5 weeks away!) has miraculously brought forward to 18th February (next Tuesday). Whether this is PALS or my consultant I’m not sure, but they gave some excuse about the alteration in clinics, so I suspect with the timing it’s more likely PALS!
I went to great pains to state that I didn’t think I was more important than any other patient, but that I was as important as other patients and needed monitoring. Not being seen for 8 months and then having all these issues surely necessitates an appointment with my healthcare team after all! I will certainly be raising some of these issues with my Consultant anyway as I don’t want to have to go through all this again.
I’m really glad that the appointment has been bought forward. Just enough time to write down all of these questions!
Sometimes we have to push a little. Situations like always make me wonder how difficult it is for those who don’t have support or can’t fight for themselves - not that we should have to!
Not long to wait now. Please keep us updated X
It’s really heartening to read that your haematology appointment was brought forward @CarolineL, very reassuring that your efforts are paying off. I’m really glad personally that you won’t be kept waiting for long for that appointment next week. Excellent stuff! Maybe when you see them next week you can ask to book in future appointments there and then. When I do this I can then let some anxiety go, maybe it’ll feel like that for you too.
Onto vegan business! I am in awe at all those cheeses you mentioned—in Waitrose and M&S?! I really need a visit back home to try them out! One of my favourite phlebotomists happens to be vegan too and kindly shared their own cashew cheese recipe, which I really want to try to make. I’ve made plant milks before (hazelnut milk is lush!) but not cheese. Wow even Cathedral City is making vegan cheese now! I’ve tried the vegan Laughing Cow triangles, and Babybels, and am glad they exist but probably wouldn’t eat them again. And I first saw vegan Boursin just the other day and might try it since you mentioned it’s decent. Funny you noted that liquid mozzarella as I’ve seen a couple types in our local health food shop but never tried them (I think Miyoko’s makes one). We’re really spoilt with fresh vegan mozzarella here—there’s even a vegan deli, The Butcher’s Son, that makes their own. I love being vegan now, it’s so much easier than in the 90s!!!
Thank you so much for all those delicious looking photos, isn’t it incredible how we have such a wide range of animal-free foods these days? If only sausage rolls and pork pies were a thing over here, I used to love the Holland & Barrett ones many moons ago. Anyway now I’ve gone and made my own mouth water but it’s too rainy here to pop out to gorge on vegan delights! Making Japanese katsu curry tonight with breaded cutlets so that’ll take my mind off pastries and cheese nom nom nom 
Hi CarolineL
I’m glad to hear your appointment has been brought forward. Sorry for being late to support you but I’ve had one of those weeks with no energy whatsoever.
PALS can be great but they can also be hit and miss. It may be worth looking to see what reputation your local PALS has, the local voluntary sector may have a good idea and be a good place to start. Unfortunately, with statutory services formal complaints are often a better approach. Complaints processes have to be dealt with in specific time periods so you can fokkow up easier if you do not get a response.
It may be worth checking if your local PALS have to respond within given timescales and whether they keep to them. I think the key thing is to visualise what outcome you want and when, and can the body you are complaining to deliver it, that may help in deciding what route to take.
Anyway, I just hope you are feeling better physically and mentally and take whatever action you need to ensure you get the treatment you need.
On a lighter note, I’m not a vegan, but Drew’s food recommendations sound very tasty and are making me feel hungry. I’m not sure how he would manage if he lived near me, finding a vegetarian restaurant ( never mind a vegan one) is quite a challenge.
Anyway, good luck on the 18th, we’ll all be thinking of you.
Pedro
@Nichola75 I can imagine for those without support or or who simply feel to unwell it must be awful, isolating, and exhausting. Everything has been a battle recently and it shouldn’t have to be this way. A little preventative healthcare through active monitoring would have prevented all of this and cost the NHS far less.
I cannot fault the care (apart from that one Consultant) once I get it, but the issue is the getting it in the first place. I’m lucky I am very tenacious and will fight for my health, but even I’ve found it overwhelming and exhausting at times.
@Duncan Katsu curry is one of my all time favourites so that sounds lush! Love the sound of all those vegan mozzarellas too - it’s the one cheese that I haven’t found a good alternative for yet, but I’m sure something will come out soon as I believe people are exploring a vegan rennet which will set cheese but not to the point of being plasticky!
I went vegan 10 years ago, and was vegetarian for 27 years prior to that (I went veggie at 11 yeas old) and you are absolutely right that it is SO much easier now. When I first went veggie it was vegetable fingers and TVP from Holland & Barrett, then Quorn came out and we were all blown away! Even 10 years ago, there wasn’t much for vegans but now we have artisan cheeses, vegan salmon, vegan shrimp, and all sorts of faux meats as well as a multitude of veg, legumes, beans etc. As my non-vegan friend said “there is no compromise with vegan food anymore.” Restaurants can still be a bit hit and miss but there’s always at least one choice, even if a bit boring! Things are definitely changing !
Just for full disclosure, below is a picture of our cashew cheeseboard this weekend - along with a lovely bottle of vegan red wine and the gorgeous bouquet my husband got me as part of our Valentine’s Day gifts! L-R: Smokey, Herbivore, Truffled, & Goudi (a vegan Gouda) - all delicious, although I am a sucker for anything with truffle in!
@Pedro Thank you so much for your lovely message and never apologise for late support - you must look after yourself too and self-care so so important.
The iron issue seems to have settled down a little, and I’ve had two headache free days in a row (fingers crossed!) which is utter bliss after a month of a headache every single day. I have my appointment tomorrow with my Haematologist so hopefully we can get to the bottom of what went wrong and try and remedy that. Let’s just say I won’t be being fobbed off and will be standing my ground!
Thank you again for checking in - it is much appreciated.
Oh we uncannily share youthful veggie experiences @CarolineL! I went vegetarian as a teen and then soon after became vegan, back when we were lucky if our local H&B had soya milk in stock every week. Can’t believe I managed to be healthy (thank goodness for nuts and TVP!!!) or motivated to stay vegan when even doctors told me I wouldn’t be able to eat enough nutrients 
Your friends are wise to note how there’s no compromise anymore. We shouldn’t have to eat salty processed nonsense, vegan or otherwise, when there are so many nutritious plant foodstuffs that lend themselves so well to simple adaptations—thinking of my breakfast burrito from the vegan taqueria yesterday that had tofu scramble and the most delicious homemade bacon that even my carnivorous other half salivates over 
I think also the “plant-based” rebrand of veganism probably helps many ethical products become successful without being tied to our old fussy vegan reputation of yore—although if it wasn’t for fussy vegans from the 1900s, would we have such great food now?! I love that Quorn and brands from decades ago are still going strong, I even see them here. Are Linda McCartney foods still a thing there?! Used to love their pies and sausages.
Your cheeseboard looks incredible, I’m rather jealous! I may well show my husband the efforts yours went to to drop some hints 
Homemade katsu curry
Tres leches valentine’s cake
@Duncan That Katsu curry looks delicious, as does the cake! The breakfast burrito description is making my mouth water - it sounds lush!
Ah, yes, gone are the days of TVP and frantic trips to Holland & Barrett! All UK supermarkets now have a Plant-Based section, even the budget ones likes Aldi, and you are right that without those fussy vegans we wouldn’t have that foundation to spring from with all these delicious offerings. I rarely use Quorn now as their vegan offerings aren’t the best, but the Linda McCartney brand is still going strong and almost all their items are vegan now - their quarter pounders are epic! Even big brands like Richmond are doing plant based items (their sausages are amazing and negligibly different to their meat version so I’ve been told) so things are definitely changing.
Stay well and speak soon!
Just wanted to give you all a quick update on my Consultant appointment yesterday.
My Consultant was not happy at all that I had not been seen for 8 months, or that the urgent referral at the end of January had not been picked up on by her team. She explained that the very experienced CNS had retired in August last year and despite giving 12 months notice, she was not replaced until after she left and the two replacement nurses are inexperienced and on a steep learning curve. My Consultant said it absolute “nonsense” for staff to tell me to go to my GP in order to get a Haematology appointment and that it was “a backward way of doing things.”
She is going to investigate some of the issues I raised and bring them up at department/internal meetings as she said my treatment is so simple (blood thinners, regular blood tests, and venesections) and that everyone seemed to be making it far more complicated than it needed to be. She also noted that I had no point of contact so when things did go wrong then I had no path to follow other than GP or A&E.
My Consultant has now come up with a solid treatment plan - 3 monthly blood tests (to be carried out by the suite where I have my venesections as she said it was pointless to attend clinic only for her to say everything was fine), 6 monthly clinic appointments with my Consultant, and venesections as needed (she said every 3 months, but prior to the venesection in February my levels have been stable and under my threshold since July 2023 so I don’t feel this will be necessary). We both agreed that this was the best course of action, and she said that if I have any further issues to leave a message for her at Haematology and that she would pursue this for me. I also made sure to repeat everything she had said at the end of the appointment to confirm understanding and to reiterate the plan.
The great thing with my Consultant is that she really does listen and she understands exactly what you are saying to her and repeats it back to you so you know she is listening. I’m fortunate that I don’t need to actually speak to a Doctor very often, as I’m generally stable with my medication and general healthy lifestyle, and I can pretty much be left to my own devices as long as my blood tests are actually happening and I am being tracked.
Actually being listened to and having a voice in my own healthcare makes such a difference, but going in with specific questions really helped me focus on the information I needed to garner and get the outcome I wanted, so I really recommend that if anyone has similar issues. Bizarrely, I came home to a letter from Haematology yesterday stating that they had received my urgent referral, that I was on a waiting list, and that I would be contacted with an appointment in due course - hand A clearly isn’t talking to hand B!
Fingers crossed that coming up to May, I get an appointment and all goes smoothly as I really don’t want to have to fight for basic care all over again!
Many thanks to you all for your help and suggestions.
Oh @CarolineL what a difference to feel listened to and be part of the plan forward.
A really positive outcome.
Be really kind to and look after yourself.
Wow, what a brilliant appointment and a brilliant consultant!
I’m really pleased you got all of your questions answered and now have a plan in place. It must put your mind at rest a little.
Have a fabulous day and treat yourself x
Such great stuff @CarolineL! Better late than never, and I imagine hearing your consultant back you up was a relief.
Maybe there’s also some greater sense of relief that treatment should now be simple? Really glad that you’ve got an individualised treatment plan, and sounds like your own CNS too.
What a great appointment. Time to let a big deep breath go, I’d say!
Wonderful news Caroline l. I’m very pleased for you. If I could dance, I’d do a victory jig for you!