u/Immediate_Divide9446

In April I ordered my second Hidden Disabilities Sunflower card to add ADHD to my other hidden disabilities (POTs, MCAS, c-PTSD), because I find it helpful to wear, especially when out alone. The personalised ones are £11.50 + postage and there are quite a few boxes to fill in, as well as choosing different symbols.

I did the initial one ok, but this time I was having a particularly bad day and forgot to delete “Add your name here” and put my name in. I ticked “the card is for me” though, and obviously they had my full name and address. As well as that, they say they keep our data for 3 months.

The card took 3 weeks to come, and wouldn’t you know it, under my photo it says “Add your name here”. 🙄 I was so annoyed at myself, so emailed immediately and apologised, explaining I have ADHD and had missed that part of the form.

Nearly 2 weeks later, they’ve just replied and basically said “Tough. You should have double checked. We can’t reprint it.”

Is it me, or is that a bit of a shitty attitude from an organisation that is supposed to be helping people who have disabilities? It would probably cost them about £2 to reprint it but they want £15. Pffft.

ETA: Not me posting too quickly (thanks, impulsivity 😩) - I replied and had a polite moan, and they’ve refunded me for the wrong one so I can order again. 👍🏻).

Morning, having gone round in circles with the NHS for 18 months, Haematology have ruled out clonal/primary mast cell/mastycytosis and I *think* I have a diagnosis of suspected MCAS (checking later), I think my best bet is to book an initial appointment at Dickson’s MCAS clinic.

What I can’t seem to find out is whether they can/will prescribe sodium cromolyn? I’m already prescribed Ketotifen, Cetirizine (can’t take Fexafenodine), Famotidine and EpiPens on the NHS which is great and they’re all working pretty well. I can’t take Montelukast so have asthma inhalers for wheezing.

I’m still having regular flares though so would like to try Cromolyn and maybe hydroxizine for itching. I’m lucky that I have a GP with a special interest in MCAS but she doesn’t know the dosage for cromolyn or hydroxizine and immunology at Addenbrookes won’t tell her because “they don’t see people with MCAS because they don’t have the expertise to treat it 🙄.

Does anyone know if Dicksons will prescribe cromolyn and/or hydroxizine? I think my GP will be happy to try taking over the prescription on the NHS if she’s allowed but I definitely need someone to prescribe them initially.

Thank you in advance.

Hello, I suspect I’ve always had MCAS but it’s been worse since COVID, so after anaphylaxis + COVID in 2024 I have been seeing a Haematologist on the NHS. He’s ruled out primary/clonal Mastycytosis and suspects MCAS but has not categorically diagnosed me with MCAS because apparently the NHS still uses the older Consensus 1/Vienna criteria which I only meet 2/3 of because it’s basically impossible to get a blood test mid-flare (no walk-ins allowed where I live).

He has written to my GP and got them to prescribe EpiPens, Famotidine, Ketotifen and Cetirizine, but his knowledge of MCAS is very limited so he tried to refer me to Immunology twice (got rejected as they “don’t have the expertise to deal with MCAS”, Dermatology at Guys (rejected for exactly the same reason) and is seeing me next week but I think he’ll probably discharge me back to the GP.

GP has an interest in MCAS (and POTs/hypermobility/ADHD, all of which I have) and although she’s happy to prescribe me, she doesn’t know how to prescribe certain things like oral cromolyn, so did an Advice & Guidance to Immunology to ask them. They however won’t give her that info until I’ve been diagnosed with MCAS by the old Vienna criteria, rather than “Suspected MCAS” which I think is what’s on my notes. But until someone on the NHS actually diagnoses me with MCAS (which I clearly have), not only can I not try additional medication but also they won’t see me because they don’t see people with MCAS!

It’s been almost 18 months of being referred, being rejected “because MCAS” but not being given a firm diagnosis of MCAS so I’m just going round and round forever. NHS Clinics who previously saw MCAS patients (eg Clive Grattan at Guys) are now rejecting any referral that refers to MCAS.

Has anyone seen an NHS consultant recently who will actually diagnose MCAS using Consensus 2, or am I going to have to save up for a couple of years and see someone privately?
If so, anyone have any vaguely affordable recommendations?

F, 56 if that helps.