Parents Say They are not Given Adequate Support to Cope with Children's Allergies
Today we welcome blogger Amy Lloyd, along with a group of mums of children with food allergies. It is widely known that there is urgent need for improvement in allergy services throughout the UK and with this in mind, we are grateful to these brave mums for speaking out and sharing with us their experiences when trying to get an accurate allergy diagnosis for their child. Unfortunately for each of them and their children, this has been a difficult journey.
Amy’s Story
By the time I managed to access the right help for my son's allergies, his eczema was so severe that they couldn't find a clear patch of skin to do the skin prick tests he needed. I was breastfeeding. Initially I had no clue that allergies could be responsible for his persistent eczema, extreme discomfort, sickness and worrying failure to gain weight. It took many GP trips, independent research, and finally, a decision to see a specialist privately to get to the bottom of what was going on.
I am now mum to two children, aged 6 and 3 years old, with allergies to cow's milk protein, soy, egg, wheat, dust mites and pollen. Luckily, when my daughter arrived and displayed similar symptoms to my son, I knew what to do.
The most significant help in my journey has been the support of other allergy mums, who have always been keen to help and advise me; I realised I wasn't alone.
Allergy parents are struggling to get their concerns taken seriously. They are being left to fend for themselves with children, often babies, who are in severe discomfort. Many parents found they were taken seriously only after their children had severe allergic reactions or anaphylaxis during weaning. These incidents could have been avoided if their symptoms had been correctly investigated and diagnosed when the parents’ concerns were first raised.
Some families have fantastic support from specialist teams and allergy clinics. Still, it is taking too long to get there, with our children's health suffering along the way.
The Parental Mental Health Impact of Allergies
The impact of mental health on parents of children with allergies cannot be underestimated. Just to get an accurate diagnosis is often a battle for families; they know something is very wrong with their child but their fears and concerns especially in initial GP appointments are often dismissed.
The stories we have heard from the ‘Allergic Community’ strongly support the need for an Allergy Tsar to be appointed by Government to greatly improve allergy education in primary care. But in order for GPs to be able to diagnose allergies effectively, they first need knowledge of allergies. Most GPs start in practice with no training in allergy at all and yet 8% of their consultations are for allergy issues.
We expect all GPs to be able to recognise symptoms and patterns of symptoms that point to allergies, to know when to use blood tests and how to interpret the results accurately. Too frequently we hear that the concerns of families with sick children (who were later diagnosed with food allergies) was that they were accused of being ‘over anxious’.
Even without a formal diagnosis, some mothers were told that they should stop breastfeeding their child. No support was offered to them in order to be able to continue to breastfeed. Others were misdiagnosed and given incorrect information about their children's symptoms.
Parents also tell us that they often experience long waiting lists to see an allergy specialist and are left without support during this time. As a result, some are forced to pay to be seen privately if they can afford to.
In several cases, severe reactions or infections occurred before mother’s concerns about their children were finally taken seriously and believed.
We hope that by sharing these experiences, it demonstrates that education and action is urgently needed to ensure better and consistent diagnosis for children with allergies.
Stories of babies left to suffer for too long and their parents being unsupported at such a vulnerable time in their lives is unacceptable. Click here to find more out about the Allergy Tsar campaign and how you can help.
Amy is a mum to two children with cow’s milk protein allergy (cmpa). They also have allergies to multiple foods as well as to dust, pollen and cats. She found the support of other mums of children with allergies a huge help, which led her to set-up her blog The Allergy Mums Club to bring their stories together.
