It shouldn't be this hard…to access allergy care because of where I live.

My son, Osian, has had multiple food allergies since he was very little and was under the care of our local hospital in South Wales up until the age of 7.  At this point, he was ready for his first food challenge, however, we soon discovered that the waiting list for food challenges was extremely long and waiting times were too.

The paediatric allergy clinic at our hospital took place on just one day a week when the paediatric consultant with a special interest in allergies was available.  The two beds on the inpatient ward that were used to run food challenges were subject to being reclaimed for patients with other, higher priority, needs.  The team at the hospital weren’t sure about the protocol for carrying out the particular food challenge my son needed.

We had a great relationship with the local team and they were amazing at what they did but it became clear that in Wales, Osian could not access the specialist care and treatment(s) he needed for his allergies.  We found the money to arrange for him to have a private food challenge with a paediatric allergist in London and this proved that he had outgrown the allergy in question.  This convinced us that he needed access to better-resourced, specialist paediatric allergy services.

So after asking for a referral to a specialist unit, we now travel to London for every outpatient appointment that he needs, sometimes staying overnight depending on the length and type of appointment involved.  We know we have made the right decision to do this, but the expense and impact on our professional and personal lives of transferring his NHS allergy care to London is huge.

We are currently looking into how we can fund private oral immunotherapy treatment for various foods he is allergic to because of the limited availability on the NHS. The first cost I have been quoted for just one of the foods is £18,000 and this will initially involve weekly trips to London.  He will miss school, we will miss work.  Being away from home will make an already arduous treatment process all the more challenging, but we have no similar option in Wales and Osian deserves the chance to try the treatment.

It shouldn’t be this hard. 

Children’s allergy care and access to life-changing treatments shouldn’t be limited because of where they live or how much they can afford to pay.

We support and fundraise for Natasha’s Foundation because its mission is to #makeallergyhistory.

@‌welshallergymummy Sarah


Follow @NatashasFoundation

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