Health Bill

Baroness Scott of Needham Market Excerpts

Committee stage
Wednesday 11th November 2026 Lords Chamber

[Baroness Scott of Needham Market (LD)]

My Lords, I have tabled Amendment 65 to Clause 15 on the topic of accessible patient involvement. It seeks to ensure that the arrangements for involving patients in commissioning decisions are accessible to those living with long-term, complex or fluctuating health conditions. I welcome the Government’s decision to retain and strengthen Healthwatch England and local Healthwatch organisations. It is an important recognition of the value of independent patient voice, and I am pleased that Ministers have listened to the concerns raised across both Houses and beyond. However, retaining that independent patient representation is only part of the picture. We must also ensure that the mechanisms through which patients are consulted and involved in the decisions which affect their care are genuinely accessible.

I take a close interest in ME. I have a family member with it and I am a member of the all-party group. For people living with severe or very severe ME, conventional forms of consultation can be extremely difficult and quite often impossible. Attending meetings, participating in lengthy phone calls or completing detailed questionnaires can worsen some symptoms considerably. I have spoken about ME, but there are many other conditions for which the same can be said. If patient involvement arrangements are not designed with these limitations in mind, there is a real risk that those people with the greatest need will have the least opportunity to influence the services which should be supporting them.

This concern is particularly relevant given the evidence of poor access to services now. Action for ME’s 2026 big survey gathered responses from more than 5,000 people living with ME and long Covid. They found that 83% of respondents reported barriers to accessing NHS ME services. I was also struck by the large number in the survey who were not able to access any kind of healthcare at all, including routine screening. This is totally unacceptable. We cannot expect services to meet the needs of these patients if they are effectively excluded from the decisions about how those services are designed and commissioned.

My amendment is very modest. It would require the Secretary of State to take reasonable steps to ensure that patient involvement arrangements are accessible and inclusive, with particular regard to disabled people and those with long-term, complex or fluctuating conditions. This could mean greater flexibility in how people contribute and how they are consulted. It needs to recognise the particular circumstances in which patients can participate. It will require a little imagination and quite a lot of empathy, but it ought to be possible. I would therefore welcome the Minister’s assurance that these patients will not be overlooked in the Government’s arrangements for patient involvement and ask whether she would consider putting something in the guidance to make sure that it happens.

[Lord Scriven (LD)]

It is a pleasure to follow my noble friend. I want to come back to the points that the noble Lord, Lord Hunt, made. I believe we are coming to a point in this Bill for us to make reasonable amendments and suggestions. Either we can continue to go down the road without the detail and let the service reorganise itself, or we can start to get some serious detail, particularly regarding specialised commissioning and the capacity of ICBs.

Just to understand, there are about 154 specialised services that are commissioned. Already, around 70 of those are commissioned via ICBs under delegated direction from NHS England, and the rest are commissioned centrally by NHS England. What the Government are asking is for the cuts to be made to staff, for the staff to go, and then for the detailed skills and knowledge that are required for the specialised commissioning to come after that process. The National Audit Office has put out a report which questions, even on existing duties, whether ICBs have the skills, knowledge and breadth to carry out what the Government want.

With these extra services, it could be that ICBs, the delegated strategic commissioners, cannot commission what Government wish them to commission. The noble Lord, Lord Hunt, and I both got quite cross with the then Minister, the noble Lord, Lord Kamall, during the passage of the 2022 Act, that things were happening in the system before Parliament had made the decision. That is what is beginning to happen again; things are happening. The offices for pan-ICB commissioning are not new; they were asked to be determined in April 2026. They were in the impact assessment for the abolition of NHS England, so they are already known about. The key issue is: what services are they going to have to give a joint response for? Will we have the list of specialised commissioning services carried out by ICBs and the Secretary of State by Report? Is that a commitment the Minister can give? If not, we cannot make a reasonable decision on Report about specialised commissioning with the depth and breadth of knowledge that is required. Can the Minister give us that commitment?

As the offices for pan-ICB commissioning—OPICs—were selected in April, can the Minister commit to giving us their duties and the budgets they will have, or will be able to direct, in writing before Report? What powers of direction will the Secretary of State have for consistency of ICB specialised commissioning, and can those be with us by Report? These are important questions that need to be answered because, if not, we will be getting to Report, being asked to support specialised commissioning with two bodies—the Secretary of State and ICBs—and, particularly for ICBs, we will not know whether they have the capacity to do it. I do not think that this House will be able to make a decision about whether it is reasonable, safe or justified for us to continue suggesting that this is a route for ICBs to commission.

Severe Myalgic Encephalomyelitis

Baroness Scott of Needham Market Excerpts

Thursday 18th June 2026 Lords Chamber

Asked by

[Baroness Scott of Needham Market]

To ask His Majesty’s Government what is their policy towards the (1) treatment of, and (2) research into, severe myalgic encephalomyelitis.

[Baroness Scott of Needham Market (LD)]

My Lords, I am grateful to have secured time for this debate on the treatment of and research into severe ME. I am particularly grateful to Action for ME, whose work with those living with ME and advocacy to improve care, treatment and understanding has been tireless. Someone very close to me has ME, and I know from our personal experience what so many other families know: that ME is not just a matter of policy documents, clinical pathways or departmental responsibilities; it is about lives changed beyond recognition. It is about people who were active, engaged, ambitious and full of plans who suddenly find that the most ordinary of tasks become impossible.

ME is a complex, chronic and disabling condition that affects multiple systems in the body, characterised by debilitating fatigue that does not improve with rest, cognitive dysfunction, pain and hypersensitivity to light, sound and movement. Even the most minimal activity can cause a serious worsening of symptoms in some people. Around 1.35 million people in the UK are estimated to be living with ME, although the true number may well be higher because of underdiagnosis and limited research. Around one in four of those with ME are severely affected. To be clear, that means they are housebound or bedbound, unable to carry out daily independent activities and totally reliant on others for personal care. Those with very severe ME may have extreme symptoms and are dependent on full-time care. Many are unable to process or tolerate food and are dependent on nutritional and hydration support. We need to be clear about the scale and the seriousness of this issue.

There have been some welcome developments recently with regard to ME. The Government’s ME/CFS delivery plan, published in July last year, was an important step. It finally recognises the needs of people with ME and has signalled a greater willingness to address an illness that has been neglected for so long. However, that recognition, welcome though it is, is not delivery. In March this year the Department of Health and Social Care confirmed that work to explore a specialist NHS service for people with severe ME will not begin until at least April 2027. That is not delivery of the service; it is simply the exploration of one.

For many illnesses a delay of a year would be troubling, but for people with severe ME it may be devastating, leading to further deterioration in their health and, crucially, signalling to them that once again their illness is being forgotten. In practice, the delay will mean that patients continue to be passed between services that simply do not know what to do, or, even worse, continue being harmed by care that is totally inappropriate to their needs. Recent prevention of future deaths reports into the deaths of Maeve Boothby O’Neill and Sarah Lewis raise serious concerns about the lack of specialist services, insufficient clinical understanding and failures to meet even the most basic care needs. These reports should weigh heavily on all of us and, I am sure, also weigh heavily on the Minister.

Those reports make it clear that it is not just a question of future improvement but of patient safety now. More deaths from ME must be prevented. I know the Minister will say the delivery plan is a starting point, and I accept that, but sadly it is a plan without funding, timelines or accountability, and it risks becoming just another document that people living with ME are told to welcome while their daily reality remains unchanged.

I would like the Government to set out what interim support will be available for patients with severe ME before exploratory work on a specialised service begins in April next year. We need clear interim measures, dedicated accountability within the department and within the NHS, and proper co-design with people with severe and very severe ME, along with their families, carers and the charities that support them.

There is also the question of research. I welcome the Government’s recent announcement to invest £4.75 million to enable the Sequence ME and Long Covid study to completely sequence the whole genomes of the 6,000 ME patients already collected. However, ME remains significantly underresearched when compared with its prevalence, severity and economic impact. For comparison, the UK spends 20 times less on ME research compared to multiple sclerosis, despite the fact that ME is twice as prevalent. Private investment has historically been limited because of the lack of established biomarkers and an underdeveloped clinical research pipeline, and this is precisely why the Government need to act. There is an opportunity here for the UK to lead in post-infectious disease research, with ME as a central part of that agenda. Along with Action for ME, I call on the Government to commit to accelerating biomedical research into ME through the life sciences sector by 2027, and this should include targeted support for diagnostics, biomarkers, treatment development, clinical trials and research into severe and very severe ME. The proposed innovation and research duty in the NHS modernisation Bill provides a clear opportunity to strengthen that commitment.

There is a very practical problem with data. At present, poor coding and inconsistent diagnosis mean that the NHS does not have a reliable picture of how many people have ME, where they are, how severe their illness is or what support they need. This makes proper service planning almost impossible, and it makes it too easy for people with ME, particularly severe and very severe, to remain invisible to the system, and they are left without adequate and safe care. I am very conscious that there are excellent clinicians, researchers, carers and voluntary organisations doing everything they can to support people with ME. My criticism is not of those individuals but of a system that has not given those with ME, especially severe ME, the services and the care they need.

I want to finish with a number of questions for the Minister. First, can she outline what interim support will be put in place for people with very severe ME before April next year? Will she consider setting up an expert advisory panel on severe ME which can give guidance to hospitals when they admit severe ME patients? Will the department look at providing clear nutritional guidance for patients with severe ME? Perhaps it could think about establishing a remote, virtual ME clinic along the lines of virtual wards. Will the Government commit to accelerating biomedical research into ME, including research into severe and very severe ME? How will the Government ensure that the delivery plan is backed by clear accountability, funding, timelines and local commissioning duties? People with ME have waited far too long, first to be believed and now for research and treatment.

Terminally Ill Adults (End of Life) Bill

Baroness Scott of Needham Market Excerpts

Committee stage
Friday 5th December 2025 Lords Chamber

[Lord Falconer of Thoroton (Lab)]

In this group, which is group 3, there are a number of amendments put forward by me but also two amendments put forward by Back-Bench Peers that are in the same sort of area. These are drafting changes. If anybody objects to any of the drafting changes, I will not move them when the time comes. If there is no objection, I will move them as long as there is going to be no vote at this stage.

Can I just go through them very quickly? Amendment 6 makes it clear that the person, who has to be over 18, has to have the preliminary discussion referred to in Clause 5, and it is making clear something that I say is already explicit in the Bill. Amendments 8 and 9 in the names, respectively, of the noble Lord, Lord Moylan, and the noble Baroness, Lady Goudie, seek to make explicit the same thing, and I hope they will accept that I am giving effect to what they are saying in relation to that.

Going on to another topic of drafting changes, Amendments 290, 366 and 931 in this group get rid of a duplication issue. Everybody wants domestic abuse to refer to coercion and control, and financial abuse. That has been achieved by incorporating the definition of domestic abuse in the Domestic Abuse Act 2021. In some parts of the Bill, as it is currently drafted, we have left in the wider definition of domestic abuse, which is now duplicative because of bringing in the definition of domestic abuse that is at the top of page 1 of the Bill; so Amendments 290, 366 and 931 remove the duplicative effect.

Amendments 332, 417, 418, 419 and 425 deal with the situation where the doctor—one of the two doctors who has got to give the assessment—cannot or will not continue to act. As currently drafted, you can get a replacement doctor only if the doctor who will no longer agree to act or cannot act has either died or suffered illness. These amendments delete the word “illness” and simply provide for a mechanism where, if the doctor cannot or will not continue to act, you can get a new doctor.

On Amendment 405, Clause 12(5) requires that the doctors who are doing the assessment make sure that there is appropriate adjustment for language and literary barriers. I am putting forward a new draft that is clearer but does not in any way change the sense.

Under Amendment 413, where a doctor has a doubt about something and is one of the two assessing doctors, he has to get a second opinion on the clinical diagnosis for the person. In relation to the second doctor, the Bill said that, if he had a doubt, he could rely on the opinion obtained by the first doctor, but that seems to us to be illogical. If the second doctor has a doubt, even after reading that opinion, he should get an opinion of his own, and that is the effect of Amendment 413.

Amendment 416 is the final drafting amendment. It redrafts Clause 13(3), which deals with the situation where the second doctor has said no, he does not think the conditions are satisfied. In those circumstances, you can get another doctor to come in. We have redrafted Clause 13(3) to make it clear that, if the second doctor says yes, he has to give explicit reasons why he is disagreeing with the first second doctor. I commend these drafting changes and beg to move Amendment 6.

[The Deputy Chairman of Committees (Baroness Scott of Needham Market) (LD)]

My Lords, I must inform the Committee that, if Amendment 6 is agreed to, I will not be able to call Amendment 9 by reason of pre-emption. We now come to Amendment 7, which is an amendment to Amendment 6.

Amendment 7 (to Amendment 6)

Moved by