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.

Mental Health Bill [HL]

Baroness Ramsey of Wall Heath Excerpts

2nd reading
Monday 25th November 2024 Lords Chamber

[Baroness Ramsey of Wall Heath (Lab)]

My Lords, today I will focus on those aspects of the Bill that concern children and young people with learning disabilities, autism or both. I also want to note that I found listening to the lived experience of the noble Baroness, Lady Parminter, very moving indeed.

My formal interest in this issue dates from my being the independent chair of NHS England’s children and young people transforming care steering group—for children and young people with autism and learning disabilities—from 2017-20, and before that as chair and non-executive board member of various NHS organisations. My close personal interest, however, is lifelong, as the younger sister of Patricia, who I mentioned in my maiden speech.

Patricia was born in a much less enlightened time than we enjoy now, with a learning disability that denied her expressive language and deemed her at the time of her early childhood in the 1950s as a mental defective under the then mental deficiency legislation. My brother Jim followed soon after. My younger sister and I came some years later, to our loving parents’ great joy, but neither she nor I ever lived with my sister Patricia, as she was taken away from our parents when she was seven—before we were born—to a huge and forbidding mental hospital near Birmingham, three long bus rides away from where our parents lived. They had to write each month to the hospital authorities for permission to visit, a maximum of once a month.

When our father died in 1990, my mother asked me to become Patricia’s co-guardian with her and gave me a box that he had kept containing all the paperwork concerning Patricia. The letters from my father asking for permission for Jim, my brother, to visit his sister once she was removed from the family home are heartbreaking to read, as he was always refused, even at Christmas time, because Jim was under 12. So Jim did not see his sister for years.

By the 1960s, these rules had relaxed, and my other sister and I were taken to visit one Sunday a month. I am ashamed to say that I dreaded those visits as a little girl—not because of Patricia, who I liked to see and spend time with, but because the heart of the hospital was a forbidding Victorian building where patients with mental health issues were kept. Sometimes I would hear screams and see figures trying to put their arms out of the tops of windows. At the side of the hospital for the learning disabled—by then called mentally handicapped—which was physically a much pleasanter part of the site, we would sit and eat with and cuddle our sister, who was always delighted to see us, especially our mother.

In time, my parents got a car, and my father would drive us to a café with Patricia. Sometimes we were made welcome, and sometimes not so much. My sister never went to school as she was 18 by the time the duty to educate children with learning disabilities came in following the 1970 Act. My mother found that heartbreaking.

As a child, I did not know that my parents were campaigning to get Patricia moved nearer home, hoping to take advantage of a more benign regime that was developing in the 1970s of long-stay campus-style hospitals where young adults with learning difficulties could live, still under NHS care but with fewer restrictions on the number of visits and more activities for patients—later residents. Eventually, my parents were successful, and those were happier years, with much more contact and my sister being able to visit the home that she had not grown up in.

After my father’s death I took up the campaigning mantle from him to make sure that Patricia genuinely benefited from the latest initiative: care in the community. My sister lived her last years, until she died in 2018, in a real house near our family home with three ladies she had been with previously, and we could visit whenever we wanted. My brother died 30 years ago, so he did not live to see this. My other sister and I had moved to London, but my mother was delighted, as were we, that Patricia lived in a proper house with its own kitchen with home-cooked meals and we could visit whenever we liked.

When the noble Lord, Lord Stevens of Birmingham, in his previous role as chief executive of NHS England, asked me to establish and chair the steering group in support of transforming the care of children and young people with autism and learning disabilities, your Lordships can see why I jumped at the opportunity. As the chair of the steering group, my task was to help bring together all those organisations which had important roles in reducing the number of children and young people with autism, learning disabilities, mental health conditions and behaviours that challenged, but with no criminal backgrounds, being detained.

The steering group included representatives from the Department of Health and Social Care, the Department for Education and local government, as well as charities advocating for these children and young people. What became crystal clear was that detention happens when local education, health and children’s social care services either do not or cannot meet their complex needs appropriately. Although the world has clearly moved on a long way from the days of my sister’s incarceration, I am afraid that I heard some very distressing accounts from families and hospital staff about the reality of detention, as eloquently described by my noble friend Lady Keeley, and not so short of enforced solitary confinement, as described so eloquently in the important work of the noble Baroness, Lady Hollins.

At the same time, I saw inspiring examples of what is possible when local community services come together around the needs of children and young people, including on a visit to a special school in north London where I saw pupils who in other circumstances would have been locked away in secure hospitals. The head teacher worked with a multidisciplinary team, including social workers, speech and language therapists, psychologists and others, who liaised closely with the pupils’ families.

One key issue was raised repeatedly by families and those youngsters who could speak for themselves in the stakeholder engagement meetings we held. Although NHS guidance states that each child or young person in such a situation should receive a care (education) and treatment review—CETR—and DfE guidance requires that they should also receive an education, health and care plan, or EHCP, this was all too often either not happening in a timely manner, or it was happening but not being acted upon. This was partly a matter of resources, partly a matter of priorities, and partly a lack of joined-up work between health, education and local government.

This important Bill includes proposals to strengthen current arrangements, and this is to be greatly welcomed. In particular, the assumption that children and young people with autism and learning disabilities should not be detained if at all possible—and, if this is not possible, for only the minimum of time and with a proper review and plan for treatment in place—is a huge step forward. I am delighted that it has received wide support across the political parties, beginning with the noble Baroness, Lady May, when she was Prime Minister and subsequently under more recent Governments. It shows families such as mine that society is beginning to make real progress towards greater understanding and humanity in its attitude towards people with learning disabilities and autism—albeit sometimes more slowly than we would wish for.

However, legislation on its own can take us only so far. Genuinely sustained improvement will require multiagency work—including at government level, as my noble friend Lady Keeley said—with high levels of co-operation in the community to provide effective support for children and young people at risk of being detained. Stronger multiagency community services, combined with the Bill’s provisions, would ensure a very different life for those children and young people and their families from the one my sister had.