NHS: Long-term Sustainability

Baroness Blackwood of North Oxford Excerpts

Thursday 18th April 2024 Lords Chamber

[Baroness Blackwood of North Oxford (Con)]

My Lords, I declare my interests as chair of Genomics England and Oxford University Innovation and a board member of BioNTech. It is a great pleasure to follow the noble Lord, Lord Patel, who is an eternal champion of the NHS and a great expert in these matters. I am grateful to him for convening today’s important debate.

As time is short, I will focus on the role of genomic technologies in future-proofing the NHS. From Crick, Watson and Franklin discovering the double helix structure to the Human Genome Project, the UK has long been at the forefront of genomic discovery. With the 100,000 Genomes Project we did something quite different—we drove that discovery into the heart of the clinic for patient benefit. Today Genomics England hosts the largest clinical whole-genome dataset in the world. Recruitment of this cohort was complete in 2018 but analysis is still ongoing, increasing the diagnostic yield all the time. In rare diseases this is over 30% and rising, while in some individual conditions, such as cystic renal disease, it is over 60%.

Each of these diagnoses is a life changed. One 10 year-old girl was admitted to intensive care with a life-threatening condition. It turned out that she had been undiagnosed with a rare condition for over 7 years with more than 300 secondary care episodes, costing the NHS over £350,000 to date. It took whole-genome sequencing to uncover a genetic deficiency and provide her and her family with a diagnosis at last, ending her diagnostic odyssey. Moreover, a bone marrow transplant proved curative. From sequencing to treatment in her case cost £70,000, just 20% of her pre-diagnosis healthcare costs. This sounds like an edge case, but rare disease patients have an average of 67 appointments over 75 months before diagnosis. For many patients this diagnostic odyssey is much longer.

That is why Genomics England was founded—to use the power of genomics to do better. Our aim is to change the fundamentals of healthcare delivery. We want to create a virtuous cycle by making genomics routine in the NHS and supporting frontier genomic research and discovery, and to continually replenish one of the richest genomic datasets in the world. In doing this we will create a return for participants through better diagnostics and therapeutics; a return for the NHS by boosting productivity and efficiency through stratification, screening and early intervention; and a return for the UK by increasing R&D investment and clinical innovation.

Genomics England now enables the NHS to deliver the world’s first nationwide whole-genome sequencing service for more than 190 clinical conditions across rare diseases and cancers. The service has supported more than 90,000 patients since its launch at the end of 2020 and is scaling fast. We ask patients for a specific consent to use their data for research purposes. Over 95% agree, and their data is stored in the National Genomic Research Library to enable cutting-edge research. The findings of that are then driven back into the clinic to improve NHS care. This means that the Genomics England structure is inherently translational by design; the heart of our mission is to drive long-term, sustainable improvements in the care of our participants and in the NHS as a whole.

We see research and clinical results flowing all the time: research at Great Ormond Street for children with blood cancers found that whole-genome sequencing was proven to provide additional information for diagnosis in 81% of cases, it changed the management of condition in 24% in cases, and it reclassified diagnosis in 14% of cases. Meanwhile, baby Oliver in Cambridge was born with a 6-centimetre tumour on his leg. Under the microscope it looked like an infantile fibrosarcoma and the standard testing was inconclusive, but with whole-genome sequencing it was confirmed as a benign myofibroma. This meant that baby Oliver was spared chemotherapy and surgery and is now happy and healthy.

We know that over the next decade data, analytics and genomics will transform healthcare by enabling personalised medicine. This means more effective and tailored treatments, better diagnostics and predicting disease susceptibility so that we can intervene earlier— possibly even preventing disease altogether. Earlier intervention and more targeted treatment not only improve patient outcomes but reduce the huge healthcare costs of ineffective treatments and side-effects. Multimodal genomic data that we are building now have the potential to cut the costs of drug development and improve population health management.

That is why at Genomics England we have launched three programmes designed to push the envelope of genomic medicine further into the clinic. We are diversifying the ancestry of genomes to improve equitable outcomes for patients; validating long-read and multimodal cancer technologies to drive earlier and more accurate diagnostics for cancer patients; and our Generation Study, a newborn screening pilot, is designed to end the diagnostic odyssey where it starts and explore options for supporting genomic-enabled prevention. The potential of genomics is immense, but to fully harness its power we must continue to invest in research, infrastructure and education to realise its full potential and truly make the NHS sustainable.

Sodium Valproate and Pelvic Mesh

Baroness Blackwood of North Oxford Excerpts

Monday 25th March 2024 Lords Chamber

[Lord Markham (Con)]

We have completed four of the initial recommendations in the report of my noble friend Lady Cumberlege, and another three are in process. The most important of those, to answer the noble Baroness’s question, is the setting up of these nine specialist centres which can provide the support needed, not just in terms of redress surgically or treatment-wise but in terms of the support that people need to help them cope with the issues.

[Baroness Blackwood of North Oxford (Con)]

My Lords, as important as this report and these findings are, this is part of a wider problem. Some 4,000 babies die due to pregnancy-specific conditions in the UK every year, but 73% of drugs given to pregnant women have no safety information. That is clearly unacceptable. The Minister knows that I have raised this issue with him before; please can he give an update on progress towards putting this right?

[Lord Markham (Con)]

My noble friend is correct on this. Probably the best way to do that is to come back in detail in writing, because it is vitally important.

NHS: Neurology Care

Baroness Blackwood of North Oxford Excerpts

Monday 26th February 2024 Lords Chamber

[Lord Markham (Con)]

I echo the noble Baroness’s comments regarding Lord Cormack.

In terms of the long-term workforce plan, I was talking this morning to the national clinical lead in this area and to Professor Steve Powis. The next stage in terms of the detail is looking at the individual specialties and neuroscience experts are part of that. In the last five years, we have seen an increase of about 20% or so in this space but understanding that need going forward is the next stage in the long-term workforce plan.

[Baroness Blackwood of North Oxford (Con)]

My Lords, I echo the comments about Lord Cormack—we are all going to miss him dreadfully in this Chamber.

There are about 600,000 people in the UK living with epilepsy. An epileptic seizure can cause significant disability and, in the worst instances, death. Only half of those living with epilepsy are seizure free, but this could rise to 70% if all those with epilepsy were targeted to the right treatments. Can the Minister say what plans the department has to improve epileptic treatment in the UK with improved specialist care?

[Lord Markham (Con)]

I thank my noble friend, and I proudly wear the Epilepsy Action badge from the meeting I was just at. As my noble friend says, it is all about trying to get that early diagnosis. If you can get that and help people get the right treatments, that is exactly the right direction of travel because it can make a huge difference to outcomes. The progressive neurological condition toolkit I mentioned earlier sets out that pathway and the model of integrated care for all the ICBs, which they will all then be held to account on to make sure patients with all these conditions—and there are 600 of them including epilepsy—are getting the right treatment in their neighbourhood.

Adult Social Care

Baroness Blackwood of North Oxford Excerpts

Wednesday 22nd November 2023 Lords Chamber

[Lord Markham (Con)]

The noble Lord is absolutely correct that the flow through the hospital is vital to A&E and other wait times. That is why we have announced things such as the virtual ward: the 10,000 beds are designed to get people out of the hospital and into a care environment where they still feel supported, thereby using technology to help take the strain. The point about this year, and the whole reason why we announced the £600 million extra investment over the summer, is that we learned the lessons of the previous year, recognising that the earlier we can get this money to the local authorities, the better they can spend it to put the provision in place.

[Baroness Blackwood of North Oxford (Con)]

My Lords, investment is welcome but reform is also vital. The NAO’s autumn report noted that my noble friend’s department ended its charging reform programme board and

“has not established an overarching programme to coordinate”

reform activity. It is instead delivering reform

“through a series of 27 projects which report to the director-general … via nine separate programme boards”.

Can my noble friend investigate this to see if there could be better co-ordination of reform to ensure that it is delivered more effectively?

[Lord Markham (Con)]

My noble friend is correct, in that having so many local authority and private sector providers means it is a confusing space in which to bring all this together. The People at the Heart of Care White Paper is trying to co-ordinate that and at the same time provide a career structure, because we know that the bedrock of all this is the staffing, and this needs to be an attractive space for people to work in. Therefore, giving them that recognised, transferable qualification which they can take into nursing and other areas as needed is vital in ensuring that we have the workforce to underpin this.

Black and Minority Ethnic Babies: Mortality Rates

Baroness Blackwood of North Oxford Excerpts

Wednesday 15th November 2023 Lords Chamber

[Lord Markham (Con)]

That is specifically what the Best Start for Life programme is all about. It is a joint Department of Health and DfE £300 million initiative focused on the 75 most deprived areas and local authorities. As the noble Baroness might be aware, the whole reason Andrea Leadsom wanted to come back as a Minister—I was talking to her about this yesterday—was to drive this programme, which she is passionately behind. That work is being done through family hubs, making sure that the whole family is involved and bringing in the dads. That sort of action is very much focused on making sure we tackle this.

[Baroness Blackwood of North Oxford (Con)]

My Lords, every year 4,000 babies die due to pregnancy-specific conditions such as pre-term birth and pre-eclampsia, but 73% of drugs given to pregnant women do not have any safety information and only one drug has been developed specifically for use in pregnancy over the last 30 years. During that time, 600 drugs have been developed for cardiac conditions. Will the Minister look at the report Safe and Effective Medicines for Use in Pregnancy: A Call to Action from the University of Birmingham, which offers sensible and effective ways to put this right and reduce deaths in pregnancy?

[Lord Markham (Con)]

Yes, I would be very happy to take up my noble friend’s suggestion and will make sure that the regulators, NICE and the MHRA, are linked into that as well.

MMR Vaccine

Baroness Blackwood of North Oxford Excerpts

Thursday 20th July 2023 Lords Chamber

[Lord Markham (Con)]

I do not necessarily believe that that is the reason for the reduction. What we saw during Covid, as with so many things, was a couple of years when people were not attending school so much and were not attending GP surgeries for their vaccinations. That is why we have had a series of catch-up campaigns, which are working. We are getting there, but clearly there is a long way to go.

[Baroness Blackwood of North Oxford (Con)]

My Lords, we learned from Covid that high-uptake vaccine programmes can be effectively delivered only with a firm foundation of high-quality data and surveillance. The UK measles and rubella elimination strategy set out by UKHSA commits to a target of rigorous case investigation and the testing of over 80% of suspected cases with an oral fluid test. Can the Minister update the House on our performance on surveillance so that we can get on top of falling vaccination rates?

[Lord Markham (Con)]

I thank my noble friend. I was speaking to the senior epidemiologist at UKHSA just this morning about this. My noble friend is right to point out the concerns in this area. On exactly where we are on oral fluid testing, I will need to write to her.

NHS: Allocation of Financial Resources

Baroness Blackwood of North Oxford Excerpts

Thursday 11th May 2023 Lords Chamber

[Lord Markham (Con)]

I am pleased to say that the figures announced today show that response times are coming down. For category 1, the most serious, we achieved the 15-minute target for 90% of calls. We are moving in the right direction, albeit there is a lot more that needs to happen in this space. That is what the investment in 800 new ambulances is about, as well as the £200 million of funding. Most importantly, it is about making sure we have the right services in place. Some 50% of ambulance calls do not result in a trip to the hospital. There are fall services, which are often best placed to help, which will pick people up in their home.

[Baroness Blackwood of North Oxford (Con)]

My Lords, I declare my interest as chair of Genomics England. Some 3.5 million people live with rare diseases but only 5% of those conditions have a specific therapeutic. Condition management is essential, but patients struggle to find it because of poor awareness and a shortage of specialist clinicians and nurses. The England Rare Disease Action Plan 2023 commits to a workforce strategy but it does not commit to anything on capacity. What are the Minister’s plans to resource the rare disease workforce?

[Lord Markham (Con)]

This will be another element covered in the long-term workforce plan, making sure that we have got every route covered. My noble friend mentioned signposting people to those services. We are shortly launching a new app service—some 30 million people already have it—to make sure we are signposting to the place where people can get the right treatment for everything, including rare diseases.

Diphtheria

Baroness Blackwood of North Oxford Excerpts

Tuesday 18th April 2023 Lords Chamber

[Lord Markham (Con)]

I am probably best placed to speak about how we engage with the Home Office, which we have been doing pretty successfully. I agree with the noble Lord about the role that those public health directors played during Covid and will play going forward. UKHSA is very much committed to doing that as well. As I said, our record on interactions with the Home Office speaks for itself—it is pretty good.

[Baroness Blackwood of North Oxford (Con)]

My Lords, I am very pleased to see that UKHSA has issued guidance in response to the increased number of cases, but it will be important to know how effective the response and the screening are. What plans are there for pathogenic screening and other forms of surveillance going forward?

GPs: Anti-depressants and Alcohol

Baroness Blackwood of North Oxford Excerpts

Wednesday 16th November 2022 Lords Chamber

[Lord Markham (Con)]

I agree that the first step should normally be cognitive talking-type therapies. As the House will be aware, we have been investing quite considerably in the mental health space. We have had a 25% increase in referrals to talking therapies, to 1.8 million in the past year alone. I very much agree that there should always be action to see whether we can help with those cognitive behavioural-type therapies first before resorting to prescribing drugs.

[Baroness Blackwood of North Oxford (Con)]

For some patients talking therapies and CBT may be an appropriate treatment for depression, as discussed, but for others next-generation SSRIs may be quite literally life-saving, and I am sure that no one in this Chamber would want to shame or discourage any patient who has been appropriately prescribed such a therapy. The Minister, I know, would want to suggest that GPs should be spoken to before any such action would be taken.

[Lord Markham (Con)]

I thank my noble friend and agree. It should always be down to the GP, working closely with the patient, to decide the best form of treatment, whether talking therapies or drugs, and that is why we are quite clear in the guidance that first and foremost it has to be the local clinician who makes the decision.

Edenfield Centre: Treatment of Patients

Baroness Blackwood of North Oxford Excerpts

Thursday 13th October 2022 Lords Chamber

[Lord Markham (Con)]

I agree with the points that my noble friend makes. I have some personal experience of people with learning difficulties, and I completely agree that the right setting for them should actually be in the community. I know that is the direction of travel of this Government, and I know that there is an objective to make sure that that is the major place where they are cared for. I have some further details on that, which I would be happy to share, and to meet with my noble friend.

[Baroness Blackwood of North Oxford (Con)]

My Lords, I have been in the Minister’s place, answering on similar scandals, and I think that the whole House shares the dismay of my noble friend that we are in this place once again. I hope that the Minister will take back the condemnation of this House that such a thing should happen in this country. We want to say that it will never happen again, but I think that we feel as though we will be back here once more.

If I could raise one single point, it is that the CQC, the police, the Government and all those involved in the investigations that go forward should take particular care with the patients and families as they go forward, to have the utmost respect and transparency in the way in which they communicate. Too often in these cases, information is leaked to the media or there are failures in communication, which leads to even more distress over and above what has already happened. Please can that not happen in this case, and can those who have already been so grievously affected be protected going forward?

[Lord Markham (Con)]

I am grateful for my noble friend’s comments. She is absolutely correct that, although we are grateful to the likes of the BBC for highlighting these issues—and I speak here as a former director of ITV—and for the undercover work they do, I believe that there is a responsibility there as well, when they have found these sorts of cases, to allow the patients and the people affected some sort of early indication, because the impact on them is central to all of this. I do not know what the BBC did in terms of an early warning on this, to make sure that there were no surprises. I think it is a very good point. We need to make sure that, although independent journalists are correctly doing their job and highlighting important issues, for which we are grateful, we first and foremost need to make sure that when this happens, patients and their family are made aware first and that their concerns are foremost in any action that is taken.