Rare Cancers Bill

Baroness Elliott of Whitburn Bay Excerpts

2nd reading
Friday 16th January 2026 Lords Chamber

Moved by

[Baroness Elliott of Whitburn Bay]

That the Bill be now read a second time.

[Baroness Elliott of Whitburn Bay (Lab)]

My Lords, it is a great honour to be opening the debate on the Rare Cancers Bill today. I thank Dr Scott Arthur, the Member of Parliament for Edinburgh South West, who, when he drew number six in the Private Members’ Bill ballot in autumn 2024, chose this crucially important subject for his Bill. I also thank him for the energy he has put in to getting the Bill to this point, with the support of his amazing team. When my dear friend, Dame Siobhain McDonagh MP, asked me if I would meet with Scott with a view to taking the Bill through the House of Lords, I of course agreed. That conversation led to me having the privilege of supporting the Bill here today.

I want to set out the background to why this Bill is necessary and, in my view, urgently needed. In this Bill, the term “rare cancers” means cancers that affect fewer than one in 2,000 people, according to the UK rare diseases framework. But in many ways, I feel that the term “rare cancers” is misleading, because they represent 47% of all UK cancer diagnoses, which is 180,000 people a year being diagnosed with one of these rare cancers. However, disproportionately, they represent 55% of cancer deaths in the UK every year. While we frequently hear of the many amazing breakthroughs in cancer treatment—and we welcome all of them—that save and extend the lives of many people now living with cancer, in ways that even a decade ago were not possible, those amazing breakthroughs do not apply people diagnosed with one of these rare cancers. In many cases, treatment and survival rates for such cancers have not improved for decades.

With so many people dying of these rare cancers every year, something has to be done to improve the situation. The measures in this Bill take the first steps to do that. I want to talk a little today about why I feel this is so important, and why I wanted to help and support taking this Bill through Parliament. I remember as if it were yesterday the day Siobhain told me what her sister Margaret had been diagnosed with, and the bleak prognosis she had been given. Many people in this Chamber will know someone who is affected by one of these rare cancers and will have had that same experience.

I want to talk about a couple of things that have crossed my life to do with rare cancers. Twenty years ago, my son went to a new school for sixth form. One of the teachers was the mother of his friend at that school. There were various fundraising events for the charity she had set up for inflammatory breast cancer, which my family supported. Two years later, my twins went to the same school for sixth form. One day, my 17 year-old daughter, Georgia, came to me and said, “I am going to do a skydive to raise money for Mrs. Cummings’ charity”. She needed my permission because she was under 18, but there was no way I could not give it. That was the energy Mrs. Cummings had among her pupils.

A few weeks later, I met the incredible woman who was that inspirational teacher: Laney Cummings. I spent two days sitting and chatting with her while waiting for the weather to clear so my daughter to jump out of a plane. I knew why my children and many others thought the world of Mrs. Cummings. I had never heard of inflammatory breast cancer, but after those two days, I knew the symptoms and have been very aware of it ever since. Sadly, only weeks later, Laney died, having been clear of the disease for about eight years.

Then, I came to the awful day I learned how gravely ill Siobhain’s dear sister Margaret was: one of those days you never forget. Baroness Margaret McDonagh was a distinguished Member of this House for many years, known to many here today and a friend to many. I had worked with Margaret in the 1990s at the Labour Party. She was a brilliant organiser in a class of her own, and we became friends. If you were lucky enough to have Margaret as your friend, you were very lucky. She was one of the most loyal, kind and sometimes very scary friends you would ever have.

A week or so after Margaret fell ill, I was with Siobhain on a parliamentary visit, on a day when Margaret was waiting to have her first surgery. I asked how she was and what could be done. To my horror, Siobhain said she had a glioblastoma tumour. She was having surgery that day, followed by other treatments, but the prognosis was bleak. I could not believe that a strong, driven woman such as Margaret, who only three months before had been at our wedding, dancing the night away, full of energy, had in effect been given a death sentence.

Over the next 18 months or so, I watched Margaret fight her cancer with the same determination and energy she always had. Sadly, she did not win this one, and left us two days before her 62nd birthday in June 2023.

The consultant she had found, who treated her with some of the things not available on the NHS, was Paul Mulholland, who gave Margaret many more months with us. He is a man many of us got to know in Margaret’s last campaign, being driven with that same grit and determined McDonagh energy by Siobhain, to find a cure for glioblastoma. While the campaign has raised large amount of money, and now his patients are in its first trial, why do we have to raise money to do this in this way? Why are the huge research programmes within our health ecosystem not doing this?

That is where the Bill comes in. It is a very short Bill, but it will make a significant difference to what we have now and be a first step in starting to tackle the issues for people facing a diagnosis of one of these rare cancers. Its aim is to improve survival rates and outcomes. Clause 1 on marketing authorisations review requires the Secretary of State to review the regulatory framework for orphan medicinal products relating to cancer. The review must consider international regulatory approaches, and a report must be published and laid before Parliament within three years of Royal Assent. It applies UK-wide.

Clause 2, duties of the Secretary of State, which amends Section 1A of the National Health Service Act 2006, explicitly requires promotion and facilitation of research into cancers affecting no more than one in 2,000 people in the UK. It requires arrangements to be in place to enable identification and contact of potential clinical trial participants and creates a statutory role of national specialty lead for rare cancers. That applies in England.

Clause 3, information disclosure for research, amends the Health and Social Care Act 2012 to allow NHS England to disclose information where necessary to facilitate clinical trials into rare cancers, explicitly subject to existing data protection legislation and safeguards. It applies in practice to England.

The Bill has had cross-party support, government support, and the support of many charities, including the Brain Tumour Charity, Blood Cancer UK, Pancreatic Cancer UK and the Less Survivable Cancers Taskforce, to name a few. It passed through the House of Commons unamended and is a Bill that can genuinely impact many lives in a positive way. I look forward to hearing the many contributions today from noble Lords in this Chamber. I beg to move.

--- Later in debate ---

[Baroness Elliott of Whitburn Bay (Lab)]

My Lords, I thank everyone who has taken part in this debate. It truly has shown this House at its best, with a combination of personal stories and incredible expertise on the subject—way beyond my level of knowledge. Everybody has played an important part in highlighting just how important this is. I particularly thank Members who have given personal stories, which are often very difficult and emotional to talk about. It not easy to do. I say that in particular to the noble Lord, Lord Patel, who has so recently been bereaved.

I also highlight the contribution from the noble Lord, Lord O’Shaughnessy, because when Lady Jowell made that most moving and, in the circumstances, uplifting of speeches, standing not far from where he is sitting now, I was one of the Members of the House of Commons who came and stood at the Bar for the entirety of her contribution. It was one of the few times I came to the Bar to listen to things in this Chamber, but it is one that I shall never forget. That positivity is in this Bill because it is about hope to change things for the better.

I also mention the contribution from the noble Lord, Lord Mendelsohn, who mentioned our friend Phil Woolas. I had the privilege of serving with him in the House of Commons for a short time, but I knew him long before that. We wish him, his wife Tracey, their entire family and his close friends well, as he battles the terrible situation he is in.

The key message coming out of this Bill is the hope that it will give to people who are diagnosed with rare cancers and to their families and friends. At the moment, there is little hope for those people. I thank Dr Scott Arthur again, his staff and the charities that have got us to this point. We should leave here today with the hope that the Bill can really change things for the better.

Bill read a second time and committed to a Committee of the Whole House.

NHS Dentists: South-West England

Baroness Elliott of Whitburn Bay Excerpts

Wednesday 24th May 2023 Westminster Hall

[Several hon. Members rose—]

[Julie Elliott (in the Chair)]

Order. A lot of people want to take part in the debate so, to try to avoid a formal time limit, I ask Members to keep to an informal five-minute limit.

Rural Healthcare

Baroness Elliott of Whitburn Bay Excerpts

Wednesday 12th October 2022 Westminster Hall

[Julie Elliott (in the Chair)]

I will call Anne Marie Morris to move the motion and then I will call the Minister to respond. There will not be an opportunity for the Member in charge to wind up, as is the convention in a 30-minute debate.

[Anne Marie Morris (Newton Abbot) (Con)]

I beg to move,

That this House has considered rural healthcare provision.

It is an absolute pleasure to serve under your chairmanship, Ms Elliott. I have already provided the Minister with a copy of the report by the all-party parliamentary group on rural health and care, which followed a three-year inquiry that we undertook with the National Centre for Rural Health and Care. It contains a lot of detail about the issues and suggested solutions. It looked far and wide across the world, not just across the United Kingdom, and I certainly hope that the Minister will give it more time than I suspect he already has in preparing for this debate.

The number of people living in rural settings is not small—9.7 million people live in rural England—and they have very different needs, so the current one-size-fits-all approach simply does not work. We have a different demographic. Generally, our constituents are older, they have complex comorbidities, they live in isolation, and many are in severe deprivation, but much of that is often hidden because the data collected is at such a high level that the issues are simply not identified. If levelling up, which is a commitment of the Government, is to mean anything, that has to change.

Covering everything in the report would take me more than the time available, so I will limit myself to the Government’s alphabet. Let me go through A, B, C and D. On ambulances—A—I absolutely applaud the Government’s position that the current situation is unacceptable and that we need shorter response times, particularly for category 1 and category 2 emergencies, but I am sure the Minister is well aware that the data shows that rural and coastal areas have some of the worst response times across the country, often because it is simply not possible to reach particular parts. In Devon, there are some areas where it really does not matter how many ambulances there are and how fast the roads might be—they are not—as there comes a point where it is not possible to get further.

We have not looked at a different approach. We have not looked at how we triage this differently so that we improve, rather than reduce, health outcomes. A one-size-fits-all approach means that those in rural areas are at much greater risk than those in urban areas. There is not a specialist centre of excellence for strokes that people can get to very quickly by being popped into an ambulance.

Money is clearly an issue, but if we properly integrated our use of fire services, police, ambulances and first responders, we would get a better outcome. Let us triage the calls as they come in differently, and then let us use those individuals and organisations better. Currently, the barriers are different pay for different forces and the fact that those organisations—fire services, police and ambulances—have different lines of accountability to different Departments, which means that they do not work together.

We could find a much better and more efficient way of doing this. Fire services are vital, because they are often physically located in some of these very rural areas. There is not a lot of point trying to get an ambulance in every rural village; that would be completely inappropriate and unaffordable, and it would not work. Let us look at how we can deal with those blockages and do this differently.

B is for backlogs. The Government’s aim to reduce the backlogs is commendable, and the plan to get waits down to one year by 2025 is fabulous. However, those of us who have rural constituencies know that the resources right now are simply not available, and rural areas have a real challenge to recruit. They are seen as unattractive. Youngsters want to be near the nightlife and the fun when they are off duty. The idea of coming to a rural area is not attractive. That is well known to the Government, because there have been various planned pilots and initiatives to pay individuals more to attract them to rural areas. It simply does not work.

North East Ambulance Service

Baroness Elliott of Whitburn Bay Excerpts

Monday 23rd May 2022 Commons Chamber

[Maria Caulfield]

I have heard of the sad incident affecting Mr Mitchell. Incidents such as that are exactly what we need to learn from. It is not acceptable for five ambulances to arrive on the scene after 90 minutes. We need a learning culture and system where staff can flag such concerns and learn from them, with systems put in place so that these incidents do not happen again, but my concern is that I am not confident that that is happening at the moment. I am happy to meet my hon. Friend and other local MPs to discuss what more needs to be done.

[Julie Elliott (Sunderland Central) (Lab)]

I am not reassured by the Minister’s response. She talks about substantial measures, but substantial measures have not worked. She talks about the CQC, but it has been involved, it did not find the errors and it has not apologised for the mistakes. I would like the Minister to add the trade unions—the GMB and Unison in particular, who represent the majority of NEAS staff—to the list of people she will talk to. NEAS has been making mistakes for decades and nothing seems to be done about it. She needs to get a grip of it for the people of the north-east.

[Maria Caulfield]

I am absolutely happy to meet anyone who wants to discuss concerns, but there are routes. We introduced the whistleblowing policy so that, at any stage, those staff and their unions can raise concerns and instigate investigations with the Healthcare Safety Investigation Branch, with those investigations looking at a service as a whole. I am happy to take any concerns forward and meet any group who wants to discuss them with me.

NHS Staff Pay

Baroness Elliott of Whitburn Bay Excerpts

Monday 8th March 2021 Commons Chamber

[Helen Whately]

I thank my hon. Friend very much for her question. Nurses are just a part of the workforce being considered in the pay review, which involves over 1 million staff. About 300,000 of those are nurses. The cost of a 1% pay rise is about three quarters of a billion pounds, but we will absolutely look at the recommendations from the pay review bodies when they come through later in the spring.

[Julie Elliott (Sunderland Central) (Lab) [V]]

The Minister has today said that she is grateful to NHS staff for their hard work during the pandemic, yet the reward the Government have suggested is a real-terms pay cut. Does the Minister feel that that is the right response, both morally and economically?

[Helen Whately]

In our submission to the pay review bodies we said we have a funding envelope to enable a 1% pay rise for NHS staff. As I have said to other Members, the pay review bodies will look at a wide range of evidence and at factors including inflation. They will also look at what is happening to pay levels across the economy.

Covid-19 Update

Baroness Elliott of Whitburn Bay Excerpts

Tuesday 2nd February 2021 Commons Chamber

[Matt Hancock]

That is our goal—that the whole country can make steady progress together. In fact, case rates across the UK are more similar in all parts of the UK than they have been for some time. There were significant regional variations over the autumn, but that is much less widespread now, hence the comments that the Prime Minister made yesterday.

[Julie Elliott (Sunderland Central) (Lab) [V]]

The Secretary of State will know that I have written to him several times recently on the subject of the gut microbiome, which the immune system heavily depends on, and its impact on covid-19. Will he meet me to discuss the emerging research, including on the use of prebiotics and probiotics, and positive mitigation of the impact of the worst effects of covid-19, helping people to suffer less and saving the NHS money?

[Matt Hancock]

I am very happy for either me or one of my team to meet the hon. Lady to discuss this issue and make sure that it is looked into properly.

Public Health

Baroness Elliott of Whitburn Bay Excerpts

Wednesday 6th January 2021 Commons Chamber

[Julie Elliott (Sunderland Central) (Lab) [V]]

Thank you, Madam Deputy Speaker, for giving me the opportunity to take part in this most important debate on the public health crisis facing this country.

I believe that it is right to go into lockdown and stay at home as much as possible to protect ourselves and others, and I will be supporting the measures today. However, these actions should have come much sooner. This is sadly the result of a long line of Government failures, from the lockdown coming too late in March last year, through the fiasco of test and trace, to the chopping and changing of tiers and relaxations in the lead-up to the latest lockdown. I have many concerns about the lockdown, not least economic ones, particularly in respect of people who are not supported at all by Government programmes or the Chancellor’s support packages, but today I will concentrate on just one: the situation in our schools and the impact on public health.

At the eleventh hour, schools were instructed to close. As chair of the all-party parliamentary group on digital skills, I have raised the lack of data and devices for school-age children throughout the pandemic—for the past 10 months—often working with my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh). Ten months on, it is still not sorted. Even with today’s announcement by the Secretary of State for Education, about 1 million school-age children will lack adequate data and devices to learn effectively. That is a disgrace.

Children in that position have now been classified as vulnerable, compounding the situation in our schools. Schools have been given no guidance on which children are to be in school and which are not. Do they have to impose limits? Should they include spacing? There is no guidance. I have spoken to many headteachers in my area today.

Alternative education hardly gets a mention. It has a frequently changing school population and the devices to do not follow the pupils.

What is the prioritisation for vulnerable children and for children with two key worker parents, one key worker with another parent working full time or a key worker with another parent not in work? Social care and hospitals will come to a standstill if this is not sorted. Teachers cannot be in two places at once: they cannot teach what is potentially more than half the school population in lessons and teach online.

All of those issues need to be addressed for the lockdown to be effective, for our frontline healthcare and social care system to cope, and for all our children and young people to receive an equitable and fair level of education.

Covid-19 Update

Baroness Elliott of Whitburn Bay Excerpts

Programme motion
Monday 19th October 2020 Commons Chamber

[Matt Hancock]

My hon. Friend asks an important question. The false positivity rate for the current technology—the PCR test—is much lower than that. The analysis of the false positivity rate published by the Office for National Statistics says that the impact of that rate is small. One of the exciting things about the new generation of technologies is that the false positivity rate is yet lower, further reducing the problem my hon. Friend sets out.

[Julie Elliott (Sunderland Central) (Lab)]

The Secretary of State has had a good relationship with local authorities in the north-east and Sunderland, which I represent, but once again the request for funding for Test and Trace and for financial support has not been answered. He gave me a commitment last week that he would get an answer, as did the Prime Minister, and it still has not happened. In the meantime, people are nervous and businesses are on the brink of going under in the north-east. It is a very worrying time. Will the Secretary of State please talk to local authorities in tier 2 about the support that is needed on the ground to help communities and businesses survive this terrible crisis?

[Matt Hancock]

My right hon. Friend the Secretary of State for Housing, Communities and Local Government is having exactly the discussions that are needed to respond to the circumstances in, for instance, the north-east. The hon. Lady will understand that it is for him, rather than me, to discuss council finances with the councils. We are putting in extra support for Test and Trace, and linking up the data systems within the north-east. I will again leap to the aid of my right hon. Friend the Chancellor about the extent of the support he has put into areas that are particularly affected by the virus, including those with level 2 and 3 restrictions, and areas right across the country.

Public Health

Baroness Elliott of Whitburn Bay Excerpts

Wednesday 7th October 2020 Commons Chamber

[Julie Elliott (Sunderland Central) (Lab)]

The extension to the regulations in the north-east that this statutory instrument brings in will come some three weeks after the regulations were introduced in Sunderland, the city I represent. The objective is clearly to bring down the number of cases and stop the spread of the virus. The reality is that cases in Sunderland have increased by 321% since the regulations were brought in three weeks ago. They have not stopped, gone down or levelled off; they have gone up massively. The seven local authorities—the LA7—had two asks of the Government when they asked for regulations to be introduced. One was to allow informal child care, which I am grateful that the Secretary of State conceded several days later. The other was that people should be allowed to go into family members’ or friends’ gardens to see people, but that was rejected.

The reality is that people in the area I represent in Sunderland are seeing their family members; they are breaking the rules and they are going into others’ houses. Everyone knows that the virus spreads when people are in small rooms together. These regulations, and the regulations in Sunderland, are actually making the virus spread worse, not improving it, because the Government have not listened to local people or to the requests of cross-party leaders on the needs of the north-east. The Government’s regulations only work if they take people with them, and they are not taking people with them. The police are not an army. They cannot possibly stop what is going on. I have huge sympathy for people going in to see their relatives, for all sorts of reasons. I do not condone them breaking the law, but I understand it.

The other thing the local authorities asked for was financial support, to allow them to support businesses, jobs and other things in the community. They asked for some £20.5 million of support for businesses, but that has not been addressed. It has not even been responded to in the Government’s response. I urge the Minister to respond to these requests, because in my constituency in the north-east, since these local lockdown measures have come in, a third of the hospitality industry has closed down and many others have cut the number of days they are open. Furlough is coming to an end in three weeks, and there are discussions about mass redundancies going on in a region that already has significantly higher unemployment than many other parts of the country. The Government need to get a grip on this. They need to act to get control of the virus and support the economy and the people of this country.

Health and Social Care

Baroness Elliott of Whitburn Bay Excerpts

Thursday 16th January 2020 Commons Chamber

[Julie Elliott (Sunderland Central) (Lab)]

Thank you, Madam Deputy Speaker, and I will take that amount of time.

I want to speak today on eating disorders, an issue that is important to me and many of my constituents and friends who have approached me about the subject. Awareness of mental health issues has been on the rise, with recent examples such as the Football Association’s Heads Up campaign encouraging people to take a minute out of their lives to think about their mental health. The ongoing work of organisations such as Mind and Beat has meant good progress on combating the stigma of mental health issues and informing the public about the importance of taking care of mental health.

There is undoubtedly still a lot of work to do on eating disorders. It is such an incredibly important and pressing issue, and at the same time so preventable with proper support, funding and attention, that I am disappointed that it was not named in the Gracious Speech as a subject on its own. The only mention of mental health is:

“My Ministers will continue work to reform the Mental Health Act.”

I very much hope that eating disorders will be part of the reform.

There is a major problem with the way eating disorders are dealt with in this country. From poor staffing levels to the way disorders are diagnosed and the wait to be treated, too many people who need treatment urgently do not get it. More than 1 million people in the UK suffer from an eating disorder and it is about time they got the services they deserve.

As Hope Virgo has shown in her excellent Dump The Scales campaign about the diagnosis of eating disorders, multitudes of people around the country are being turned away by their GPs as a result of their body mass index not being low enough. They are being refused treatment, not because of any psychological assessment, but because their weight is not low enough. Although National Institute for Health and Care Excellence guidelines advise against the use of single measures such as BMI to determine whether to offer treatment, that does not mean it does not happen. As much as I would like to present case study after case study of young people being turned away from treatment because they were not considered ill enough, only to go on to do more damage to their bodies in the hope of actually receiving treatment, time does not allow it. But it happens, and that has to change. It is shocking that it has happened once, but we are talking about hundreds of people being turned away from services they desperately need.

Those first connections with medical professionals are so important, not least because of the bravery shown by sufferers in seeking help and talking about their illness, but also because the earlier the treatment is administered, the more effective it can be. Identifying problems as early as possible does not just allow people to be treated quickly and more efficiently, but can mitigate the long-term effects of illness and decrease the chances of relapse. Early intervention is the key to proper treatment for those suffering from eating disorders. It might mean that the person seeking help no longer needs a hospital stay, or that they recover quicker, or that they feel stronger fighting their illness knowing they have the support behind them that they need. That is why the Government need to do a full review of treatment and care pathways for people who suffer from eating disorders and ensure that there are services that people can approach, and that they can be treated quickly and effectively.

However, there is also a big variety in quality and speed of treatment depending on where people live in the country. We need to see the end of the postcode lottery, which means that the quality and speed of care is based on where people live and what age they are, and sometimes ends in those lucky enough to be referred being sent to hospitals more than 200 miles from where they live. Only yesterday, I saw a letter to a young woman who, after an urgent referral, has been told she should expect an 18-month wait to be seen by a psychological therapist. That is truly shocking. I therefore fully agree with the calls on the Government by leading eating disorder charity Beat to hold the NHS to account for comprehensive implementation of the access and waiting time standard for children and young people in every region and community.

There is desperate need for direct investment in a fully supported NHS that does not need to divert the funds assigned to mental health to other areas to plug massive funding deficits in an attempt to continue to provide basic care.

We also need to ensure that our medical professionals understand the signs of eating disorders and the pathways available. Trainee doctors can receive as little as two hours’ training on eating disorders throughout their several years of training. We need to invest in services to get parity of esteem for mental and physical health, and there are simply not enough beds to deal with the growing demand from those suffering from eating disorders and those who need mental health treatment more generally.

We need more staff. Those who work for the NHS are stretched as it is, and we need more staff in frontline services to help ease the pressure and ensure that treatment is effective and quick. We need more and proper support in our schools. I implore the Government to act on those measures.

[Madam Deputy Speaker (Dame Eleanor Laing)]

I am delighted to call Laura Trott to make her maiden speech.