This week I spent a day at the House of Commons to lobby MPs about allergies. This event was organised by the National Allergy Strategy Group (NASG) with the All Party Group for Allergies. Chaired by John Cruddas MP and Mandy East of NASG the meeting was to assess where we are ten years on and what needs to be done in the future.
If we don’t shout about this, nothing will ever change…
It was great to see this subject getting heard at parliament and fantastic to see and meet so many experts and movers in the allergy community. It wasn’t great to hear the stories of members of the public who stood up to share their experiences.
I had tears running down my cheeks listening to one lady who lost her 5 year old boy after an anaphyactic attack. She knew he had asthma and he was getting some treatment for that but at no point did any doctor or medical professional mention that his asthma might be caused by allergies. If they had this little boy’s death might have been prevented. This is completely unaccetable when we now have NICE guidelines in place for doctors to refer to. It should be simple and easy to take care and time to make the right decisions and referrals.
If it turns out to be nothing to do with allergies then you move on and try other treatments or help the patient manage their condition.
Why have NICE guidelines if doctors don’t know about them? How do we get this simple knowledge of how to recognise possible allergy symptoms through to doctors who are already struggling with budget constraints, paperwork and patient load as it is?
I won’t bleat on about this but it really upset me. It made me feel very bad about moaning about the treatment I have had trying to get answers through the NHS.
A little about my experience
When I was little there were no EpiPens and people didn’t have allergies. They might have had hayfever or been allergic to cat hair but hey, that’s not serious is it? I can tell you from someone who has both of these also, it’s sometimes almost impossible to see and breathe so I would never downplay any allergy. Anyone who has a cat, animal hair or dust allergy and has spent any time trying to breathe in a room full of their allergen will know that it’s painful, frightening and inhalers don’t work. The only solution is to get out of that place.
There were tests however and I was diagnosed with a nut allergy and told, “Don’t eat nuts!” and that truly is about it. I also had a referal for eczema to the dermatology clinic at Amersham where I had patch tests and was told, “Just stop scratching!”.
My own doctor was quite convinced that it would be almost impossible for me to have other allergies as well as peanut. What was I? Greedy or mad or something?
I knew something wasn’t right. I was frustrated. Why should I live with chronic eczema for the rest of my life? I started to notice that milk made my lips tingle so I cut it out, completely. Just like that. My eczema disappeared. However, now when I eat even a tiny amount of dairy I can go into anaphylaxis.
You can imagine why I am not filled with faith in the medical profession.
After my fifth serious anaphylactic attack at the age of 36 (and I’m not counting all the unexplained ones as a child, looking back much of my sickness was probably caused by undiagnosed allergies) I was finally referred to Amersham where I received amazing advice and dietary help from their Dietician, Tanya Wright. However, I NEVER saw an allergy doctor.
My allergies started to get worse recently, I am now allergic to soya, discovered after a week of sudden terrible asthma we worked out it was soya. I managed to give myself another horrendous asthma attack by having another cup of tea with soya milk. Self diagnosed, not much fun, but it’s pretty obvious that suddenly I am allergic to soya. Why? Why does this keep happening?
I discovered then that I had been discharged from Amersham with no hope of seeing anyone at all. Finally I got referred to Oxford after begging, crying and nearly dying! This really isn’t acceptable.
I would like to say how relieved I am to finally be speaking to a specialst Allergy Doctor at Oxford Churchill Hospital. Dr John Reed you are my hero. This may sound daft but I never knew how bad my dust allergy was. I was living in fear that asthma, when I was out, would turn into anaphylaxis. Now I know how bad my dust allergy is I know also that if I get myself out of the dusty place it will recede. Air borne dairy/milk particles can also do this. Now I know what’s happening I can avoid certain places and get out quick when it happens!
I know also that it isn’t always fatal cross contamination, just air borne allergens. This causes me far more problems than I ever imagined. I can avoid my food allergens, but I can’t avoid dust and other air borne allergens unless I live in a sterile bubble for the rest of my life!
It seems that adult allergy services are at risk across the country. Amersham have cut theirs. Southamptom are having to fight to save theirs. It’s not just children who get allergies. What will happen to your child when they reach adulthood? We know that teenages are amongst the most at risk, they go out into the big wide world and make mistakes and most deaths to anaphylaxis are in this age group.
Some positive stories
It wasn’t all doom a gloom, there were people who have had fantastic advice, help and treatment on the NHS but it seems these are the lucky few. It really does come down to where you live. It’s a postcode health lottery. People who live in the right place and can get their doctor to make the referral to a specialist are winning. The rest of us are fighting just to get seen by a specialist.
One boy had gone private and had desensitisation treatment to his allergens and was now able to eat them without any reaction. But how do you know where to go? What is the advice on finding a reputable private allergy specialist? And how much does it cost? It’s out of my price range and probably most of the population. Yet this boy’s life has now been transformed.
What price do you put on your health? Maybe it’s worth it to spend £1000 on some blood tests and £15,000 on immunotherapy or desensitisation treatment. I’m sure it is but where exactly is that money supposed to come from? Sadly I have to pay the council tax and bills or I’d be put in prison and I dread to think what happens to people with allergies inside… do they cater for those with allergies in prisons? or care homes? which I do sometimes think is another form of prison! I can’t afford to go private at the moment but I’m saving up!
So what’s needed?
After ten years of campaigning by NASG, although there have been improvements, allergy services remain inadequate across the UK. Serious and complex allergy illness is not managed, and patients are not being seen by appropriately trained specialists. Allergy is not always managed well by organ-based specialists. This results in unnecessary cost to the NHS (disease continues because of lack of identification of the allergy or because of poor management) and impaired health and quality of life of patients and their families.
Allergy facts
- Allergy may affect 30% of adult and 40% of children in the UK. About 5 million people have allergic disease sufficient to require referral to an allergy specialist.
- Yet the specialty is tiny (third smallest of the medical specialties in UK)
- Britain has about 5–10% of the number of allergists when compared to other European countries. For example the UK has less than 30 compared to 400 in France, up to 2000 in Germany and 1250 in Spain)
- In the entire UK, there are only 12 trainee posts for allergy, so that each year only 2 doctors complete their training as allergy specialists.
- Most GPs have little knowledge of allergy
What we need:
The Department of Health to take allergy seriously and improve NHS Allergy Services. This requires a national strategy and cannot be left any longer to local efforts. This should include:
- More consultants in allergy
- More trainee posts in allergy
- More specialist allergy nurses
- Improved knowledge of allergy for GPs
- Making commissioners aware of the needs of allergy patients
- We need an Allergy Tsar
What really, really needs to be done…
We all need to shout about it. Even those with good stories. Tell people. Share your stories. It will help others to hear what help they could be getting and spur them on to demand the support they need.
That means YOU! You out there, reading this. Are you getting good advice and support? Or are you struggling to cope alone, self-diagnosing allergies and cutting out food groups in a desparate bid to find health and happiness and an escape from the hell that is allergies?
Allergies are a life sentence. You never get a holiday from allergies. But it can be a very positive thing if you learn how to cope, get the support you need and develop strategies and tools to keep you or your child safe.
I have learnt a great deal on my journey. Even though I now have loads of allergies and some more which I have yet to pinpoint (I’m on an elimination diet to try to figure that one out) there are so many good things. I am so much healthier than I would be if I could eat anything at all. I have learnt to cook, learnt about food, good food and become healthier than I’ve ever been as result.
I have met some amazing people, learnt to blog, gained confidence speaking on the radio and at parliament.
I am now just beginning to earn a living in the allergy world, something which makes me very happy because I’m so passionate about this.
Just sometimes the special pudding you get is better than the normal one. This makes me very happy.
It is a very good excuse to get out of doing things you don’t want to do, “I’m so sorry but I’ve had a really bad allergic reaction…” of course I am only joking, honest!
I have all you virtual friends who support me every day with tweets and comments. Keep em coming.
So it’s not all bad. You are not alone. Get help if you need it. Demand it because it’s what you deserve.
Meeting Cheryl Gillan – a ray of sunshine in a gloomy allergy infested world
My MP John Bercow was busy on the day in question and not able to attend the All Party Group session. Not surprising since he is The Speaker of the House. He is very, very supportive though and has sent numerous letters to the Department of Health on my behalf. And he did say he would try to send a representative along but if he did I didn’t get to meet them. Were you there? John Bercow or your representative? If you were, what do you think can be done to help this situation?
My friend Alison, who I travelling into London with that day did manage to get an appointment to meet her local MP, Cheryl Gillan. I didn’t realise this but MPs are only really meant to meet their own consituents and since I don’t live in Amersham/Chesham I shouldn’t really have been present at this meeting but I was and it was a breath of fresh air. Cheryl sat and listened to Alison and myself and I mean really listened. She has a few allergies herself so she understood and she has promised to raise a few questions for us and do what she can.
One of these being, Who is the Minster for Allergies? Is there a Minster for Allergies? We couldn’t find out the answer. Does anyone know the answer?
I know we are just one more shouting, moaning voice amongst the masses but if you don’t say anything or ever try to make a difference you definitely won’t succeed in doing so. I would like to say a heartfelt, “Thank you Cheryl!”
So what are YOU doing to get the message out there and raise awarness about allergies? Lobbying MPs is just one way to shout about this (or lobbing things at MPs, another much better suggestion from my lovely step sister).
What experience have you had with the NHS? What do you think needs to happen to improve services? How can we make things better?
NB: Sadly Cheryl Gillan MP has passed away since this blog was written
I am semi-self-diagnosed (my GP agrees with me, but not my specialist who appears to think it doesn’t exist) as Severely Salicylate Intolerant. Officially I have: Anaphylaxis, Idiopathic Urticaria, Angeodema, Significant Dermographism, Anxiety, Depression, Multiple Chemical Sensitivity and Chronic Fatigue; plus whatever the name for having arthritis-like symptoms without the actual arthritis when you have allergies is called (I’ve never been told). But it’s all caused by Salicylate Intolerance. I eat Salicylates and come into contact with chemicals or personal care products and perfumes high in Salicylates or asprin (which btw is pretty much just Salicylic Acid) I get sick. I avoid them, i get better. Ergo, I am Salicylate Intolerant. And, contrary to what my immunologist (yeah, not allergy/food intolerance specialist, immunologist) says it’s not in my head, I’ve tried tricking myself into eating or using “bad” things… it makes me sick even if I don’t know what’s in it. I’m only getting to see this specialist because my GP pestered for months and then (on the specialist’s advice) we lied about my address, giving them my brother’s as where I live there is absolutely zero provision for allergy testing and treatment. It’s just: here’s some steroids/an epi-pen/inhaler, get on with it. No advice (I don’t know when I should use my epi-pen and have been given into trouble for not using it when I should have, instead just massively oding myself on antihistamenes instead). When i was sent to a nutritionist/dietician her advice was “here is some vitamin C and an out-of-date print-out from the AllergyUK website, don’t trust the internet, bye”. Helpful? I think not.
I spent years at school and college being off sick with constant coughs, colds and apparently flu-like symptoms. My knees used to give out in PE and I often couldn’t breathe during excersise, I got/get tired quickly and was throwing up a lot. When I went to the dr’s they variously told me I was making it up, it was just growing pains, I was trying to get attention, I was trying to get out of school, it was just a bit of hayfever and it’d clear up (here, have some pills that don’t work), it was all in my head and I should stop wasting their time… When I was 21 I had 3 anaphylactic episodes in the space of a week which almost ended in me being hospitalised. The common rute cause that linked each attack? Broccoli.
Aged around 13 I finally gave in to my mum’s nagging me to “eat your greens”, “you used to nummy those up when you were a baby then you just started spitting them out when you were 1 or 2”, etc. I couldn’t remember why I hated these things so I eventually gave up and discovered that, actually, these things are very tasty indeed. The healthier I ate, the sicker I got. But until I was 21 we had no idea why. I cut as many Sal-unsafe foods and personal care products as I could and almost 3 years on, I’m happier, healthier and on the road to recovery, but I’m not well yet. I’m still finding out what my boundaries are, what I can do, where I can go, what I can eat, what I can use, what I can wear, etc. Advice is fragmented and contradictory, so I’m making it up as I go along. I’ll get there in the end, but it’s going to take time.
What am I doing about it? Trying to change things via [Do Not] Feed the Animals… I want to both raise awareness and create useful products for people who have allergies, eczema and food intolerances (which I’ve recently decided also covers Type 2 Diabetes as a Sugar Intolerance). I want to work with users to find out what they actually need and I want to overhaul the medic alert industry completely (cos it sucks atm). That’s a lot to take on, so I need a lot of help. Fancy being involved?
Eilidh, you sound like someone with a plan, this is exactly like my story except for me it’s nuts, dairy, soya and celery and tomatoes. Also wheat gives me dreadful pain, bloating. Had lots of anaphylactic attacks and very little advice until later in my life. This blog is my small attempt at helping others fight for better, live life, challenge the current nhs line of advice and not settle for second best. We can make things better. Let’s talk!