Help please. MCAS investigation on the NHS?

[meromano]

Hi. Sorry this is quite long but would be grateful if a anyone is able to help. I've been trying to get a referral for MCAS unsuccessfully so wonder if anyone can help please. I first contacted Mastcellaction.org who gave me a list of NHS and private consultants. I can't really go private so asked my GP to try a local immunologist who was on the list but they said they don't deal with MCAS. After researching further, I came across Potsuk.org and contacted one of the consultant's listed, via her secretary, but she didn't deal with MCAS and she suggested 3 other consultants. The closest to me is Dr Clive Grattan and I called his secretary who confirmed he deals with MCAS and told me how to forward the referral, which I passed on to the GP. The GP confirmed she'd done the referral but the next day I got another message from her saying that the referral was refused as neither Dr Grattan, dermatology, nor the Immunology Dept at the same hospital deal with MCAS. The GP has now said that she has tried 3 referrals and will not refer me again for MCAS as NHS consultants won't see patients for MCAS. I am not sure that I have MCAS but have been dealing with symptoms consistent with the diagnosis for years and am at a loss as to what to do. Has anyone here been diagnosed on the NHS? My thinking now is to ask for a dermatology second opinion. I've been diagnosed with discoid eczema by a GP with derma interest, but another GP at the same surgery first told me it was a fungal infection. I also have little read spots and what looks like small broken vessels and when I've asked GPs, never got any answers just told it's nothing. I've had itching on and off for years too and occasionally exercise induced urticaria. All this I believe is possibly indicative of MCAS, along with other symptoms and diagnosis I've received. If any of this makes sense, can anyone relate and maybe advise? Many thanks.

[bluecar15]

I've seen elsewhere from other mast cell patients that it's best not to mention mast cells on the referal? Often the referals are filtered out before they even get to the consultants team and they need to meet that clinics referal criteria based on commissioning. The main problem is mentioning mcas I believe but I've heard of referals rejected for mastocytosis and mast cell involvement too. This is obviously an issue ethically! And something that definitely needs addressing especially as the same consultants are seeing mcas patients privately/ using nhs funding to research mcas!!! But that part isn't relevant to you getting help obviously, so what I would suggest is asking your gp to refer you to a derm because of your symptoms. Sounds like you've got some strange skin stuff going on so that's what you want the referal to talk about. If you see a derm who's knowledgeable about mast cell stuff they should be able to recognise it without being led to a diagnosis anyway (you'd hope anyway! We are all human!)

But once you are in the office the referals gone through so if you want to mention the potential for mast cell involvement you can go ahead.

You mention other conditions, if they are atopic then you'll be able to access most mcas meds in primary care anyway (and if they aren't you might be able to with a gp who's willing to listen and is willing to be 'creative' when rationalising their prescribing). Not every med will work for everyone with mast cell issues but there are research papers online for free that go through diagnosis and potential treatments so most of this can be done in primary care if you can't access a consultant.

There are drs that don't believe in mcas and they tend to have quite a severe view on any mast cell disorder so it can be useful to have other reasons for a prescription anyway in case it's non formulary/ someone challenges it.

For example: all of the meds I'm on for mcas also happen to treat other conditions that I'm diagnosed with. This is what I mean about being creative with prescribing rational, it just helps when you come across mast cell issues not being funded/skeptical drs. There's no argument to take me off any meds even if you don't believe in mcas as they are well established treatments for these conditions and they are helping with the symptoms of those conditions.

Nizatidine- Acid reflux

Fexofexadine- itching, hayfever

Ketotifen-itching at night, asthma

Nalcrom- multiple food allergies

I'm also looking to trial montelukast which will officially be for my asthma (anyone who is using dual action inhalers is above the prescribing boundary for this, in some trusts they use montelukast before moving on from the basic steroid inhaler)

I've tried other meds but again I knew what else they treated as well as my mast cell issues and so didn't have to share the mast cell issues with drs I knew would have a problem with it. Its not ideal and I hate that it feels dishonest but I'm so much better it's worth it. Even if you see a mast cell proficient consultant they are going to trial these same medications and them working is one of the things looked for in a mcas diagnosis.

Even for the biologic injections like omalizumab, a lot of the time the official line for most UK patients will be that its being used for asthma or urticaria as that's what they are commissioned for. It makes the funding easier and is less of a headache to your drs than off label prescribing.

Of course the other option is going private as pretty much all these drs work privately too. If you are uncertain of the diagnosis I'd say going to a consultant derm with a open mind is probably the best course of action but that's imo.

[bluecar15 in reply to bluecar15]

I think one of the mast cell related fb pages had a guide for referals pinned but I can't speak for if it's accurate ect as I went a different route and saw it after

[meromano in reply to bluecar15]

Wow! Thank you so much for this thorough and helpful response. You sound like a specialist in the subject. The consultant I asked for, Dr Grattan, is a dermatologist but I made the mistake of mentioning MCAS. The thing is my surgery has a GP with an interest in dermatology and she seems to think she knows as much as a dermatologist, so she would be the first port of call and I probably would have to try her recommendations before they would agree to refer me. I don't think I'm going to ask for an MCAS referral anymore, in any case the GP has said she won't do it. But I have an appointment to investigate my lung function and ILO so may ask them about their views. I briefly mentioned it to the consultant on my initial video appt but he didn't say anything about it. I have read that the cause of the MCAS dysfunction is unknown and personally I don't like to take medication unless absolutely necessary ie I'd die without it... 😁. Over the years I've been quite sensitive to meds so I'm not a fan - isn't that actually part of the MCAS picture? I was talking to my pain clinic psychologist earlier who has known me a few years now, and she made me realise that I've been going from diagnosis to diagnosis for years and I could keep doing it and still never get all the answers. So I'll see how it goes with the lung specialist and go from there. Thank you very much for your advice and I wish you well with your own journey.

[Cherwin in reply to meromano]

Hi I too suspect I have Mcas as well as HIT. I am also seeing a lung specialist following 3 X-rays a CT scan , can I ask what lung symptoms you have?

[meromano in reply to Cherwin]

Hi Cherwin. Hope you get some answers. I tend to get breathless with exercise or just trying to walk fast or going uphill so I have to pace myself and not rush anywhere. I haven't been able to run properly (not even after a bus 😁) for years, ever since I had multiple PEs and was put on warfarin for a while. I also get air hunger, feeling like I can't breathe properly or get enough air when I'm in an enclosed environment with other people - I don't think it's claustrophobia or just crowd-related as it takes a while for me to feel the lack of air and to need to open a window or go out for fresh air; it can actually also happen when I'm on my own in an airless room. I also find that I can no longer sing like I used to (not that I was ever a good singer, lol), especially high notes, as it feels like I can't push the air through my throat or vocal cords properly (can't really explain it). I can also get breathless from a heavy meal so maybe it's not just the lungs? There could be a number of reasons and I believe stress definitely makes it worse, and I've had severe choking episodes during periods of stress. I got a letter back from the consultant saying that I might have some breathing disorder but not heard back yet about a follow-up appt with the speech therapist which I was supposed to get within a few weeks. I was told a couple of years ago by an ENT consultant that I have LPR and ILO but the London Consultant and speech therapist don't think it's ILO. What about you? What symptoms do you get?

[Cherwin in reply to meromano]

So sorry I have been off social media a while. The issues I have is that part of my lungs are filled with mucus , it seems when I breathe in chemical fumes or eat the wrong foods my chest goes tight and later I cough up mucous. I have had about 5 X-rays and 2 CT scans but the mucous is still plugging the airways and I still haven’t seen an immunologist. I also get the air hunger but i think that is another reaction to food’s chemicals or stress from over exertion. How are you now?

[Person99]

I would reach out to PALS at the hospital and CC the relevant secretary. Explain you had liaised beforehand and had been told to get the GP to send the referral through, but this has been the response. Ask for clarity on why the referral has been rejected as the Dr in question does in fact investigate what you were referred for, and seek confirmation that it will be rectified as the error was on their part and the GP is now too frustrated to re-refer. If they insist on a new referral, I would provide the GP email address and advise that due to their error, you require them to clarify this to the Practice and request for the referral to be resent.

If they say they aren't commissioned to deal with MCAS then I would go back to the Secretary for support. Good luck!

[meromano in reply to Person99]

Thank you. I actually went back to the secretary and she said she had advised me that the consultant may not accept the referral, which I didn't remember her saying. After a bit of to-ing and fro-ing she asked me to send the referral from my GP directly to her so she could show it to the Consultant and check with him, which I did. However I haven't heard since. But I'm not sure it's worth the effort because: 1) my understanding is that there is no known cause or cure, just medications to mask the symptoms which may cause other issues; I don't really want to take pharmaceuticals, would prefer to find the root cause and try and improve it through lifestyle, diet and supplements but all that is pie in the sky on the NHS. Don't get me wrong, the NHS is an amazing service which does many goods things and we're very lucky in this country to have this free, but they're not always great at dealing with chronic conditions and I'm pretty sure politicians and pharma are the real bosses, rather than doctors and money would run out even quicker if people were cured - what would they do with all their drugs then? 2) Compared to some people's experience, my symptoms seem much milder and more manageable. Going private is way too expensive and I doubt there's any guarantee of a cure anyway, might be wrong. But I might try to contact the secretary again at some point? Thanks again for your advice.

[Batmanwon in reply to meromano]

hi i have found you story very interesting indeed. I pretty much have exactly the same going off with many many more problems than you mentioned with the same response from the nhs for 3-4 years untill finally a GP called dr amy small mentioned mcas. (Look her up there are articals on her campaining about long term covid and mcas). She has explained my journy ahead was very difficlt as many nhs drs will not tolerate mcas. I have been refused surgery twice due to the amount of problems i have however every department iv seen ( urology derm reumatology immunology ent waiting for GI AND ORTHO) clinically nothing wrong. I have low igg levels and nothing else showing in blood. Clear alergines test and only inferior turbinate hypotrophy ( nasal conjestion) clear ct of brain clear ct from neck to knee. Waiting on spinal and brain MRI (Privatly as nhs continuously refuse even though many deprt specialist suggest i have a neurological condition). Im also awainting a dopplar test as i have POTS a condition related to mcas. (If you dont know POTS have a look you may find you see symptoms that correlate). Another condition that is related is enlors dalos. A connective tissue dissorder.

It is cery true that nhs shy away from mcas and from my own opinion it is due to yhe lack of knoledge in general about the condition and because they is no known cause or cure.

I have started double dose fexafenodine and fermotidine. This has helped some what. They are H1 and H2 anti histamines. They stop a hell of a lot of symptoms but not all. another good thing in my case has been a specific diet eliminating as much histamine foods as possible. As mcas is related to histamine inbalance abd or intollerance the less gistamine the better.

I am only a fellow sufferer and have no diagnosis. This is all my own built up information and opinion so please understand i am no soecialist and could well be very wrong.

I hope this helps you on your journey. Good luck all the best

[janeps]

Hi,

I have had the same problem. My local Immunology Dept NHS rejected my daughter's referral saying it was an under researched disease that they would not offer any treatment, advice or prescriptions for.

Mast Cell Action advised me that there are currently no NHS departments accepting referrals. We have had to pay privately. I think the situation is compounded by Covid 19 Longhaulers who haven't recovered and have Mast Cell symptoms.

[meromano in reply to janeps]

I think that's going to happen with more and more services until there is no NHS any more; a year or two ago, after researching for ages I asked for a referral to the only national service for a particular condition but they had a waiting list and weren't taking referrals. I've not tried again.Sorry to hear about your daughter. MCAS is not a new diagnosis, just found some info saying articles were written in 1988 and patients started to be reported in 2007 so it's been known for a while, so they must have been treating it, plus there is at least one UK FB group with people having been diagnosed on the NHS, so I don't understand why they are refusing people. Could it be, as you say, that people have heard of it in connection to Covid (I saw a video about it and had never heard of MCAS before) and many are asking for referrals? But why not put them on a waiting list instead of point blank refusing? My local immunology team is at the RSCH, is it yours too by any chance?

[janeps in reply to meromano]

Ours is Preston.

[floating_]

I was diagnosed with MCAS at St. Thomas' on the NHS many years ago now, I'm still under their care. My consultant is Dr. Grattan. I don't know of any other NHS consultants and as you've already found out no others are dealing with MCAS.

[HBEd in reply to floating_]

Dr grattan has been mentioned as not taking any mcas patients so thats interesting when you were initially refd to him did it just say other issues

[floating_ in reply to HBEd]

I've been under St. Thomas' for years, sinxe 2018. This was before he started refusing MCAS patients. Plus he's no longer my consultant there.

[JayCeon]

For some international comparison: My allergist does after-care for some patients of Molderings. Altho my insurance is semi-private she said I'd have to pay for most of the bloods and meds myself and like you've said recommended to stay with not taking any meds (except if nec. rupatadine), because of my med intolerance vs. severe side effects. Supps instead. When I asked for an acupuncture prescription for the severe fatigue (my energy is at 10-15% now), she said yes, but what diagnosis shall I write on it, as MCAS won't be paid for? - I said: OK, fibro, as that worked in the past.She didn't write a report, but put "MCAS" on my bill, which I then showed to my GP, who put it on his list. But for bloods and prescriptions we're keeping it a secret.... O.o My basic treatments are tons of supps anyway, which cost a ton, but no insurances pay for them here.

[HBEd]

Hi how did you get on