NHS: Patients with Allergies

Baroness Ramsey of Wall Heath Excerpts

Thursday 12th December 2024 Grand Committee

Asked by

[Baroness Ramsey of Wall Heath]

To ask His Majesty’s Government what steps they will take to ensure that patients with allergies receive timely and comprehensive care from the NHS.

[Baroness Ramsey of Wall Heath (Lab)]

My Lords, I am pleased to have the opportunity to consider this challenging issue with noble Lords who have kindly put their name down for this debate. I am grateful to the staff of the House of Lords Library for their helpful briefing as well to those charitable organisations that have contacted me with a wealth of useful background information.

At the start, I want to explain where my close interest in this issue arises. My 16 year-old daughter was diagnosed with multiple allergies as a baby. Thankfully, she has grown out of most of them, and I will never forget the astonished smile on her face when, having grown out of her egg allergy, she had her first bite of chocolate cake. Unfortunately, her severe allergy to peanuts has continued, and her father and I have twice seen for ourselves the reality of anaphylaxis, watching helplessly as our daughter suffered. We are fortunate that in all other ways she is a fit and healthy teenager, but every time I read, as we all will have, about the death of a child or a young person from an allergic reaction, I weep for the parents.

We will all have been moved by the tragic story of Natasha Ednan-Laperouse, who died at 15 after an allergic reaction to the sesame seeds hidden inside a baguette. It has been inspiring to see how Natasha’s parents set up a charity to improve the outlook for allergy sufferers in future. In fact, the findings of a pioneering Natasha clinic trial led by researchers at the University of Southampton, University Hospital Southampton and Imperial College London are already transforming the lives of some children with severe milk and peanut allergies.

Allergy UK kindly briefed me about the scale of the problem across the country. More than 100,000 people were admitted to hospital for anaphylaxis over the 20 years to 2018, which tells us that an otherwise completely healthy person is more likely than not to be admitted to hospital following an extremely frightening allergic reaction during the course of today’s short debate, and, most distressingly of all, the data shows that the next death from anaphylaxis is likely to happen in less than seven weeks from now. As noble Lords will understand, every such death strikes what I can only describe as terror in a parent’s heart. Noble Lords can imagine what I am feeling when I ask, “Have you got your EpiPens?” every single time my daughter leaves the house.

When my daughter was only a baby, her GP, who was concerned about her eczema, referred her to an allergy research study at Evelina London Children’s Hospital just across the river from here, part of the wonderful Guy’s and St Thomas’ NHS Foundation Trust. Both there, and at the trust’s paediatric allergy clinic, she received wonderful care over the next 15 years. I subsequently learned that the trust is a World Allergy Organization centre of excellence, as is Southampton, which demonstrates that England has some of the world’s pre-eminent specialist clinical and research allergy centres.

These specialist centres are few in number and are clustered in the south-east. A child like my daughter, living near to a renowned specialist centre, will have access to cutting-edge research, along with the clinical benefit, while others elsewhere will not have access to even basic specialist services. Even where, as at Guy’s and St Thomas’, children and young people have the chance to get the services that should be available to all, once they start to transition to adulthood, support largely disappears.

Services for adults are very limited indeed. I was amazed to learn that medical training includes only four hours on allergies—contrast that with 46 weeks on gynaecology for all doctors. I certainly do not want that reduced, of course, but I do want allergy training to match it. The amount of research into allergies is pitiful when compared to other health conditions. Wonderful though the work of the Natasha Allergy Research Foundation is, does it not rather shame us that Natasha’s parents had to persuade food retailers to pay for life-changing research?

I am delighted to learn that the new Government are working on a 10-year national allergy strategy, and I ask my noble friend the Minister to make sure that this is used to increase training and research significantly in future. However, my experience, both as a mother and as a non-executive director in the NHS for 20 years, has brought me to the realisation that there is a yawning gap in the way in which the NHS responds to the needs of those patients who are no longer children but not yet fully adults. The transition from one to the other is challenging in many ways. Teenagers develop independence by taking risks and learning to deal with the consequences. It is important for them to do so; indeed, their brains continue to mature until they are 25.

What does that mean for teenagers with severe allergies? In the absence of effective treatments—I go back to the shortage in both capacity and research—the only way to avoid anaphylactic shock is to minimise the risk: never leaving home without two EpiPens; never eating food that might, for example, have been cooked in peanut oil; and always checking the ingredients of everything that you eat, even—perhaps especially—at a party in someone’s house, where the alcohol may be flowing freely and the lights may be down low.

When my daughter was a young child, she had an anaphylactic shock in hospital as a result of the testing of her condition by the allergy specialist medical team. As her father and I watched on in horror, the consultant who led the team treating her with adrenaline and steroids asked, after she was over the emergency, whether he could borrow my phone for a moment. He calmly took photos of her, pale and silent and not moving on the hospital bed. When we later asked him what on earth he had been doing, he invited us to look ahead to her later, teenage years. When you transition from childhood to adulthood, you do take risks, but having a constant reminder on your phone of the reality of anaphylaxis might just save your life.

In preparing for today’s debate, I have been able to explore this issue with the Natasha Allergy Research Foundation and, through it, with Dr Claudia Gore at Imperial College Healthcare. As a tertiary allergy service, Imperial continues to treat many young people until they turn 18, but, elsewhere, young people are discharged or referred on to adult services at 16. In the words of the foundation, the result after that is a real “postcode lottery”. Many of the young people with whom Dr Gore works have other comorbidities, including, in many cases, mental health issues such as depression and anxiety and, in some cases, special educational needs and disabilities. These can make it much harder for them to navigate the world safely and manage their allergies appropriately.

This is on top of the fact that adolescence brings all manner of challenges, even without additional medical concerns. Having transition services that understand young people and the changes they are going through in that phase of their life, as well as the move towards independence, would be hugely beneficial in helping them navigate the world as someone with severe allergies. Dr Gore is clear: there is a real lack of age-specific life or support resources for adolescents. So, we need more people with expertise in allergy, but we also need more people experienced in transition as a specialism in and of itself, because helping young people navigate adulthood with a medical condition can play a big role in improving their outcomes.

The phrase that Dr Gore used, which stuck with me, was: “Transfer is an action; transition is a process”. In other words, young people need support to begin preparing for that transition in advance of the move up to adult services, and they continue to need to be supported. She made three other key points. First, there is a real pressure point here for the NHS because lots of young people are approaching the cut-off point at which they will transition into adult services, where specialist allergy care is sorely lacking. Where there is no specialist adult allergy service to discharge to, it typically ends up with GPs, many of whom lack training in allergies. Secondly, there is not enough expertise on healthcare transition and there is a lack of resource on helping young people with allergies with the key life skills that they will need. Thirdly, in view of how common allergy conditions are in the UK, integrated care boards need to have more allergy care in place, possibly operating in a similar way to how asthma care works currently.

So, just as important as more training and research for the new national allergy strategy is the development of an NHS service for patients transitioning from childhood to adulthood. The benefits of specialist health services for those between the ages of 16 and 24, say, could go well beyond sufferers of severe allergies, but where better to start than a condition whose treatment relies completely on persuading those afflicted by it to manage their healthcare and personal risks? I hope that my noble friend the Minister will commit to meeting me, along with the Natasha Allergy Research Foundation and expert medical advisers, to discuss the way forward.