Back from the B.S. Back from the B.S. Back from the BSACI. This weekend I was in Telford at the annual BSACI conference. The BSACI is the British Society for Allergy and Clinical Immunology and they organise an annual meeting, amongst other smaller events.
The theme “Allergy – Towards True Multidisciplinary Care” celebrates the best of allergy care, a strong multidisciplinary approach with practitioners from primary, secondary and tertiary care all working together.
Most of the attendees were doctors, nurses, allergists, scientist and the companies who supply them like immunotberapy companies and allergy testing companies. To attend as a journalist, a patient with experience if allergies, asthma and eczema and take part as a speaker was both a privilege and an honour.
I spoke on the first day with Mandy East of the National Allergy Strategy Group (NASG) about Allergies – the unmet need. My presentation was fairly light hearted but it had a very serious message behind it. I did upset some doctors and I didn’t intend to but ultimately many, many people are being let down by the current NHS system and we HAVE to find ways to improve that.
My experience, being diagnosed with a peanut allergy in childhood and conforming to the typical allergy patient with eczema, asthma, hay fever and multiple allergies to other air borne allergens such as cat hair, dog hair, dust, latex etc is not unusual.
When I first had an anaphylactic reaction there were no adrenaline injectors. They didn’t exist.
There was no understanding of the condition and I had many other reactions caused by the ignorance of others and cross contamination over the years. I grew up with no idea how serious my peanut allergy could have been. In my early teens I had a MASSIVE attack after eating out at an Indian restaurant. I knew something bad was happening to me but I didn’t know what. The doctor told me to ‘Avoid peanuts’ which was good advice but that was it. At the same time I read about David Reading’s daughter who was my age and had just died from an anaphylactic reaction. I was shocked to the core. I joined the Anaphylaxis campaign which is the best thing I did towards getting answers.
- My doctor was not equipped to advise me about how to stay safe with a peanut allergy. I never saw an allergist. I wasn’t referred to a specialist.
- I did eventually get prescribed an adrenaline auto-injector and shown how to use it by a nurse who injected it into her stomach (?), this was a very long time ago so I hope that wouldn’t happen again.
- I suspected that dairy was causing me delayed allergic reactions and chronic eczema. My doctor told me not be so stupid. I couldn’t possibly be allergic to more than one thing. I just had eczema, some people did, and there was no reason for it. So I supposed it must be just an intolerance and cut it out for good since not eating dairy meant eczema free skin. I now have anaphylaxis if I eat dairy.
- After a few more anaphylactic reactions during which I didn’t use the pens, I was too scared, I tried again to get advice. I never saw an allergy specialist.
- I did get some tests done at Amersham Hospital and was very lucky to have some great advice from Tanya Wright, the dietician there at the time. But I never saw an allergy specialist.
- When I started to have more reactions to other things I discovered that Amersham Allergy Hospital had discharged me because, “There was no adult service at Amersham”.
- I never saw a dermatologist in all these years until very recently because my eczema was ‘not severe enough’, despite the fact that my quality of life was pretty pathetic at times.
- Throughout this time I have always kept regular visits with the asthma nurse. I don’t always learn much but they make sure I am taking the right medication, using my inhalers properly and monitoring my use of the oral steroids. I strongly believe the asthma team should be communicating with the dermo and allergy specialists. Maintaining good asthma control is probably what has kept me from having more severe allergic reactions as asthma is ALWAYS involved for me.
- Now, in my 40’s I have finally had a breakthrough with my eczema using Protopic. I am now going to Oxford Churchill Hospital (some distance from where I live) and have a very open minded dermatologist who sees the connection between my skin problems and allergies and have found another very special dietician in Leane Reeves. The job they do is often underated – it’s what happens when you get home that is the hard part.
You might assume that things would have moved on from the 70’s and 80’s. You might expect that people discovering they were allergic now would get referred, get help and learn how to keep themselves safe and many are getting excellent treatment at Cambridge Hospital, St Mary’s, Guys & St Thomases and the Royal Brompton in London to name just a few but there are so few specialist centres in the UK that it is still very much a post code lottery.
- Lessons are not being learnt.
- Mistakes are still being made.
- Maybe lives are even being lost due to poor communiation.
- Patients are being let down.
Special thanks to Mandy East for inviting me to speak and to everyone who attended the graveyard slot at 6.30pm on a Sunday evening – just before the entertainment for the evening began at 7.
The feedback and comments afterwards were so lovely and encouraging. Many saying how pleased they were to hear the patient’s perspective, how it really is for us, the reality of living with the unmet. Many also said it was shame more didn’t attend. There were about thirty of forty though so not too shabby.
I spoke to a lovely GP from Malta who wants to help his patients so I hope he gets in touch for some advice on organising support groups for his patients. He came up and said to me, in a plea, his voice anguished, he was at a loss, “Tell me, Ruth, what can I do for my patients with allergies when even my colleaugues are not seeing the seriousness. What can I do?” I wish I could wave a magic wand and ensure everyone who needs support is within easy travelling distance from a specialist centre and everyone gets to see a specialist at least once a year, or until they feel able to cope without.
This blog is my way of trying to make a difference. To fill that yawning gap before you get a diagnosis and afterwards. If I can help just a few people not to feel so alone by writing all these blogs then I have achieved something that wasn’t there when I needed help. When I was a teenager worrying about what was happening to me with no idea where to find the answers there was no ‘google’ or blogs.
I will be blogging about my experiences at the BSACI over the next month or so. There is so much to share and I haven’t even shared all the amazing stuff I learnt at EAACI in June yet. Where does the time go?
To read what we were all tweeting about search for the hashtag #BSACI2014 and click here to find out more about the BSACI Annual Meeting.