Janet Daby MP: speeches

Speeches

• 11 Sept 2026 · Terminally Ill Adults (End of Life) Bill · Hansard source

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  Surprisingly, I will not try to persuade hon. Members how to vote today, because I think they know by now how they will vote and why. However, I feel I need to share my thoughts and views with my constituents, and to set out why I am voting the way I am. I say this because there is a significant change from how I voted previously. If hon. Members are influenced by my contribution, so be it. I will get right to the point. I previously voted for assisted dying. I recognised then, as I do now, the deep turmoil that family members experience when they know that their loved ones are dying, or see them die. The agonising distress or pain that they experience is something that no one wants for themselves or their loved ones. However, I cannot shake from my mind a conversation I had with someone some time ago about assisted dying. They had been diagnosed with HIV/AIDS before the time of advanced medication for this illness. Their body was breaking down, and they had been informed that their prognosis was bleak. They said that had assisted dying been an option for them then, they would have taken it. However, it was not an option, and they have since been stabilised on medication and are in full-time work. Although they do have side effects and feel tired, they are living a meaningful life, and, as Members can imagine, they are no longer an advocate for assisted dying. When I previously voted for assisted dying, the way I voted on the amendments to the Bill varied, as I was trying to navigate my way through this issue while ensuring that I was considered in my approach, but the question of inequality was always on my mind, and how this would impact poorer communities, isolated individuals, people with mental and physical disabilities, and those in controlling and coercive relationships; how this system would work in our society now, and how it would change in years to come; and, of course, how it would impact black and minority ethnic communities, who already experience deep inequalities in the health service, as shown by years of impact assessments and reports on the issue. As chair of the APPG on sickle cell and thalassaemia, I am constantly reminded of the health inequalities and suffering that people with this disorder continue to experience. They are constantly undermined and ignored, and their disorder is grossly lacking in research funding. Among the new evidence is the Government’s own equality impact assessment on the effect of assisted dying on the health service. This recent report suggests that people from ethnic minority backgrounds may be more susceptible to coercion due to structural pressures such as poverty, lower-quality care and domestic abuse. The impact assessment states that as a result of those pressures, ethnic minority people could disproportionately choose “to have an assisted death to avoid financial hardship or escape abuse.” This relates to broader concerns regarding the availability and quality of social and palliative care, particularly for already disadvantaged communities. Earlier this year, up to 60% of hospices reported that they were having to make cuts to frontline services as a result of financial pressures. While the Government have increased funding for the sector, it is clear that far more work is needed before those in need of support at the end of life receive the dignified care and choice of treatment they deserve. Alongside that are the additional pressures on the broader health service and the legal sector resulting from this Bill; they reinforce my decision to vote against it. I implore the Government to invest in hospices and palliative care across the country, to make them the best they can be for all postcodes. Following my vote in favour of assisted dying, I had nightmares about dying and death for two nights. I had to wrestle with the knowledge that I was not entirely comfortable with the decision I had made. My conscience was not at peace, and I cannot again in good conscience vote for the Bill. In fact, I wish there was a Bill before this Chamber that we could have all got behind, as there is so much that needs to be done in our society. I decided that if the opportunity arose again, I would vote against assisted dying. I do not judge the conclusions that other hon. Members and hon. Friends reach, but I ask that we respect each other and act in a respectful way.

• 7 Sept 2026 · Health Bill · Hansard source

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  I thank my hon. Friend. He could not have said that more clearly. This is absolutely about inequalities in the health service. He has explained and expressed that extremely well. I know that he, like me, will continue to advocate for people from ethnic minority and diverse backgrounds. New clause 162 would require the Secretary of State to do two things: first, to lay an annual report before Parliament on the performance of specialised services against national standards; secondly, to ensure the regular publication of data on quality and outcomes of the kind currently captured in the specialised services quality dashboards, which NHS England has maintained on a non-statutory basis. Without legislation, those dashboards could quietly disappear when NHS England does, and that must not happen. The new clause would make their continuation, or the continuation of something equivalent, a legal requirement. I want to be clear about the modesty of this ask. We are not asking the Government to build new services, ringfence budgets or second-guess local commissioning decisions. We are asking them to measure, publish and report, in order to ensure basic accountability for patients with rare conditions, and for geographically dispersed people, predominantly from black and minority ethnic backgrounds, so that they have services that work. The patients who rely on specialised services are often marginalised twice over: once by their condition, and again by a system that does not always see them clearly. New clause 162 would require the Secretary of State to identify them, and to report back to this House on what they find. I urge the Government to take this new clause seriously and to respond appropriately.

• 7 Sept 2026 · Health Bill · Hansard source

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  I thank the Minister for the Bill. I put it on record that I am chair of the all-party parliamentary group on sickle cell and thalassaemia. I rise to speak to new clause 162. It is well known that the NHS commissions specialised services unevenly across England. I am confident that this Government’s ambition is to end the postcode lottery of specialised services, and I would like to hear more about that. New clause 162 is designed to do something simple: to ensure that Parliament can identify where inequalities exist, measure where they are improving and hold the Secretary of State to account when they are not. I will make the case for the provision through the experience of people who live with sickle cell. Sickle cell disorder is the fastest growing serious genetic condition in England. It causes episodes of serious chronic pain, spasms and a crisis that will continue if left untreated. It can damage organs and frequently requires hospital care. When the crisis strikes, patients have to attend A&E and wait for hours, often only to be seen by medical staff who may have little or no familiarity with their condition. Due to past experiences, many sufferers do not trust the NHS to meet their needs, and stories of sufferers who have died in hospital due to complications, such as Evan Nathan Smith, are well known. In 2021, the “No One’s Listening” report demonstrated that people with sickle cell need to be listened to. That report prompted NHS England to act. It initiated the sick cell and thalassaemia quality improvement programme, from which came seven pilot emergency department bypass units. These dedicated facilities allow sickle cell patients to avoid A&E and receive immediate care to bring a crisis under control. The service works, but there is a problem, which brings me to the new clause. When the APPG met last week, we heard from stakeholders that this progress is fragile. There are only seven bypass units across the country, and with the transfer of commissioning responsibilities under the Bill, there is a real and legitimate fear that what has just begun to be built will not be protected to continue.

• 7 Jul 2026 · Health Bill (Twelfth sitting) · Hansard source

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  The Minister will recall that in evidence, Dr Rosie Benneyworth, interim chief executive officer of HSSIB, spoke about the vital work of the organisation, especially with regard to investigations where vulnerable staff and workers do not feel confident about coming forward for fear of reprisal. HSSIB did great work in that area, and I am wondering whether the CQC will carry it on and take on board that learning.