NHS: Treatment of Children from Other Countries

Baroness Merron Excerpts

Thursday 21st November 2024 Lords Chamber

[Lord Hogan-Howe]

To ask His Majesty’s Government what policy they have in relation to the treatment of children from other countries who have life-threatening and rare diseases for which high-quality treatment is available on the NHS.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)]

My Lords, no specific government policy exists for treating children from other countries with life-threatening or rare diseases and it is generally preferable to treat patients close to home, subject to capacity and expertise. Some UK international healthcare agreements, mostly with Europe, the British Crown dependencies and overseas territories, permit doctors to refer patients to the UK. Referrals are usually reimbursed and happen when wait times are excessive or the treatments are not available in the child’s home country.

[Lord Hogan-Howe (CB)]

I thank the Minister for the reply. This really is a Question about trying to inspire the NHS at a time when it probably most needs it. Professor Owase Jeelani is a consultant paediatric neurosurgeon based at Great Ormond Street. His worldwide speciality is the separation of conjoined twins who are unfortunately joined at the head. He has now carried out nine of these operations, obviously affecting 18 children, and, because of the frequency, his success rate and the outcomes have improved over time. More recently, four of the nine operations were carried out abroad. If they are carried out at home, £1 million has to be raised every time to pay for them, which the professor ends up having to do. Alternatively, he and his team have to travel abroad, which means that he spends less time operating at Great Ormond Street in other specialities on children who need his support. Is the Minister prepared to meet the professor to see whether there is any better way of dealing with these problems, which are rare? It is of course an international problem and the babies affected have no hope unless someone does this.

[Baroness Merron (Lab)]

The noble Lord shines a light on the rarity of this condition as well as its importance. I would of course be happy to meet the professor. The noble Lord will know from our own discussions that this is an extremely complex area across the NHS and there is, as I said in my Answer, no overarching UK approach. Rightly, this is a trust-led approach because trusts have to make decisions about the balance between specialist work and other work, including the reduction of waiting lists.

[Baroness Manzoor (Con)]

I support the premise of the Question. Can we look at the NHS supporting these cases? From my perspective it is vital for three reasons. First, it is inspirational on the world stage for the NHS. Secondly, it retains expertise in the NHS. Thirdly, it offers the soft diplomacy powers that we need internationally. I urge the Minister to look at this again to see if the Government can find a way round it.

[Baroness Merron (Lab)]

I will be glad to take back to the department the comments of the noble Baroness and the noble Lord, but I reiterate that it is individual expert centres that are responsible for liaising with referring clinicians. By definition this has to be done on a case-by-case basis because we are talking about highly specialised treatments for rare diseases. Again, there is no set nationwide policy for local implementation because of the very nature of the challenge and the specialism to which the noble Baroness refers.

[Lord Scriven (LD)]

My Lords, maybe a good place to start would be to be bolder and more ambitious with the rare diseases framework that already supports international collaboration as part of the Government’s policy. As part of this framework, will the Minister investigate setting up an international centre of excellence in the UK that could be funded by both the UK and international partners for procedures and R&D to be carried out here, which would deal with some of the problems that both noble Lords have mentioned?

[Baroness Merron (Lab)]

The noble Lord is right to make reference to the UK rare diseases framework. The intention of that is to improve the lives of those with rare diseases—for example, by helping to get a faster diagnosis, increasing awareness of rare diseases, better co-ordination and care, and improving access to care, treatment and drugs for those in this country. I will add his suggestion to the list of matters to raise with the department.

[Lord Kamall (Con)]

My Lords, we can all be proud that the UK is home to some of the world’s best medical experts on rare conditions. As the noble Lord, Lord Hogan-Howe, said, there are patients in other countries—often poorer countries—who seek the help of a UK expert. The Minister knows that in the UK the NHS charges, understandably, and that is welcome, but there are other challenges if that expert goes abroad. She spoke about some international agreements in an earlier answer, so can she say a bit more about how NHS England works with other systems in other countries, especially with reference to some of those agreements?

[Baroness Merron (Lab)]

The agreements that the UK has in place which contain referral arrangements whereby the funding is discussed and agreed as part of the process of the referral are with the member states of the EU, Switzerland, the EFTA-EEA bloc of countries, the British Crown dependencies and some overseas territories. As the noble Lord rightly acknowledges, it is only fair that those using the NHS are those contributing to it, and we therefore have to ensure that we stick to those agreements. If trusts seek to undertake work outside of that area, that will be a matter for individual trusts, which will have to make decisions about their funding and their requirements to serve the NHS.

[Lord Beamish (Lab)]

Will my noble friend the Minister join me in congratulating the heart transplant unit at the Freeman Hospital in Newcastle, particularly the unit which conducts children’s heart transplants, providing a great service not just for this country but for children from across the world? One of the issues, though, is trying to encourage donors to come forward. What more can be done to encourage donors, specifically children, to come forward?

[Baroness Merron (Lab)]

I am very happy to add my congratulations to the hospital, which my noble friend knows very well. There are several approaches that we take on donors. One is the increased use of technology to ensure that organs donated can be used when and where needed. We tend to lose a lot of organs because that is not possible to do, depending on the technology. Another approach is to ensure that organ donation is a route that people are assured they can take, feel confident in, and are willing to participate in, including where somebody has died and we must deal very delicately, of course, with their loved ones.

[Baroness Watkins of Tavistock (CB)]

My Lords, I declare my interest as a member of the board of NHS England. Clearly we need to meet the needs of our own population at the moment but also need to retain staff, and there could be a real opportunity for working with the overseas development aid budget to enable exchange sabbaticals between Commonwealth countries and staff here in relation to these special services, so that children from Commonwealth countries who otherwise would not have access to these rare treatments could do so both here and abroad. Could the Minister talk with the ODA department to see whether such an initiative could be developed?

[Baroness Merron (Lab)]

I will certainly ensure that officials take up the suggestion of the noble Baroness to explore possibilities.

[Lord Lansley (Con)]

My Lords, one of the reasons why people are envious of the NHS is because we are able to do things through the NHS which are not necessarily able to be supported in other countries by private medical insurance, and we have the benefit here of some of the finest clinicians in the world. That is something I am sure the Minister will want to focus on when she meets Professor Jeelani. There will doubtless be very specific ways in which he and his team might be helped, but could she bear in mind the fundamental principle that only about one in three million babies is in this condition and they have no hope other than to be treated by his excellent team? That is a responsibility, regardless of residence and those definitions, that we probably take on board through the NHS.

[Baroness Merron (Lab)]

I understand the point that the noble Lord makes and am sympathetic to it. He will also understand the need to ensure not only that we have the expertise here and use it correctly, but that the payment is in place so that the areas of excellence can also meet the requirements of other demands on them, including the reduction of waiting lists. He knows that it is a very delicate balance and that is why it is right that this is a trust-based approach, but I will certainly bear that in mind when I meet the professor.