The comments made by Jonathan Ashworth, the Shadow Secretary of State for Health and Social Care, on 3 March 2021.
Rishi Sunak promised to be ‘open and honest’ with the British public. But buried in the small print of his Budget is a cut to frontline NHS services that will increase pressure on staff and do nothing for patients stuck on growing waiting lists.
This Budget papered over the cracks rather than rebuilding the foundations of our country.
The comments made by Jonathan Ashworth, the Shadow Secretary of State for Health and Social Care, on 25 February 2021.
Our NHS staff deserve a fair pay rise. If Rishi Sunak next week refuses it will be kick in the teeth to our brave hardworking NHS heroes.
The speech made by Jessica Morden, the Labour MP for Newport East, in the House of Commons on 22 February 2021.
I have brought this debate to the House tonight to urge the Government to announce the results of their review of how the benefits system treats the terminally ill. The review was announced over 19 months ago now, on 11 July 2019, in response to campaigning by charities Marie Curie, the Motor Neurone Disease Association and others. I pay tribute to those charities for all their work on this issue and their support for me in bringing forward my ten-minute rule Bill, the Welfare (Terminal Illness) Bill, last summer. I also thank individual campaigners like Mark Hughes, Dave Setters and so many others who have continued to make a compelling case for change. The same is true of my friend Madeleine Moon, the former MP for Bridgend, who did so much good work on this issue during her time as chair of the all-party group on motor neurone disease. She had first-hand experience of the mental and emotional toil that comes with supporting a loved one with terminal illness. The Bill she brought to the House on this issue in 2018 is the inspiration for the Bill that I brought forward last summer. I have no doubt that the pressure exerted by these and other extraordinary individuals and organisations was instrumental in pushing the Government into announcing the review in July 2019.
So on their behalf, I again call on the Government today to take urgent action on two elements of the special rules for terminal illness guidelines that are not fit for purpose: the six-month rule, which means that someone is obliged to provide medical proof that they have six months or less to live so that they can access benefits quickly, more sensitively and at a higher rate; and the three-year award, which forces terminally ill people to reapply for benefits in the minority of cases where they are lucky enough to live longer than three years after the benefit is awarded. The special rules for terminal illness process is intended to enable people who are terminally ill to access benefits such as the personal independence payment or universal credit rapidly at the highest level of payments without going through the standard application process. Claiming under the special rules requires the person’s doctor, consultant or specialist nurse to submit a DS1500 form stating that the person is reasonably likely to die within six months. That forces people who have unpredictable terminal illnesses such as motor neurone disease or those expected to live longer than six months to apply via the standard claims process, which involves filling in long forms, attending assessments, delays in payment, lower rates, and even meeting work coaches—all while waiting months for payments. Clearly, that is highly inappropriate for people who have been given the devastating news that their condition is terminal.
The six-month rule is flawed and urgently needs to change. The all-party group on terminal illness, chaired by the hon. Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry), found in its 2019 report that it was outdated and arbitrary with no basis in clinical reality. This six-month hard deadline is too much to ask of carers and claimants. It creates a completely understandable resistance to applying, prompting the added pain of writing down the grim reality of daily life and the inevitable future darkness. It gives no hope, no joy in life in a world where hope and joy are often all that can keep you going. In the case of unpredictable illnesses like MND, heart and lung failure and many neurological conditions, it is all but impossible for clinicians to make an accurate prediction of life expectancy. It is little wonder that nearly a third of clinicians told the all-party group that they have never signed a DS1500 form for a patient with a non-cancer condition. That means that patients like Simon, who was diagnosed with MND in December 2020, are not able to access the special rules. His wife Nichola told the MND Association:
“The doctor said that the DS1500 was designed for cancer patients…He looked at Simon and said ‘you won’t be dead in six months’. We had to complete the whole form and apply under the standard rules. It’s so long winded, so time consuming because you just don’t think about how long you spend on helping him get dressed etc. People need that support…often it feels like you’re banging your head against the wall.”
This unpredictability is why the three-year award also needs to change. Half of all people with motor neurone disease, for example, die within two years of being diagnosed, while only around 10% live for more than five years, but there is no reliable way for doctors to determine who that 10% will be, and, as with many progressive illnesses, their condition has no prospect of improvement and will only deteriorate further as time goes on. Emma Saysell, from the wonderful St David’s Hospice in Newport, tells me it is seeing more and more cases of cancer patients having to reapply for benefits with the DS1500 after three years. That comes in part due to improvements that have been made in palliative treatment, but while patients are living longer, they are still living with a terminal illness.
One particular example St David’s presented to me was of a lady in her mid-40s diagnosed with advanced breast cancer. The lady’s prognosis at diagnosis was very poor, and she had two teenage children. It was quite right to submit the DS1500 at diagnosis. Her disease is still progressing, but due to the palliative chemotherapy she has received, the process has been slowed, and she has now lived longer than three years. She has recently had to reapply for all her benefits due to the three-year rule, which has been hugely stressful for her and her family.
It is a clear anomaly that terminally ill people are awarded benefits for only three years. Employment and support allowance claimants with progressive conditions are entitled to the severe conditions exemption, meaning that they do not have to repeat work capability assessments, while higher-rate PIP claimants can qualify for an ongoing award, with a light-touch review after the 10-year point. It is cruel and absurd that people living with a lifelong condition are entitled to a 10-year or lifetime award, while those with terminal illnesses have been told they must reapply for benefits or risk losing them after just three years. Those who do happen to live longer than three years tell me they feel they are being punished by the system for living too long.
It is now seven months to the day since I presented my ten-minute rule Bill, and more than 19 months since the then Secretary of State, Amber Rudd, announced a review of how the benefits system treats terminally ill people. In all that time, we have had no official word from the Government on when they intend to bring forward these vital and long-awaited changes to the benefit system.
Matt Western (Warwick and Leamington) (Lab)
I commend my hon. Friend for the campaigning work she has been doing on this issue for an extended period, following the work that Madeleine Moon was doing. Scotland introduced its changes to SRTI back in 2018. Does my hon. Friend agree that it is seems very late for the Government here not to have done anything about it? This is all about funding people who desperately need money in the last few months of their lives.
Jessica Morden
I thank my hon. Friend for that contribution, and he reads my mind—I am just about to come to that section of my speech. This is an issue across the whole UK, and the devolved Governments of Scotland and Northern Ireland appear to be treating it as a higher priority than the UK Government do. The Scottish Government passed a law to change the six-month rule for devolved benefits back in 2018, and that will be coming into force later this year. The Northern Ireland Assembly unanimously backed a motion to scrap it in October, and the Executive are proactively looking to fix this issue and deliver reform quickly. Why, then, is Westminster dragging its heels?
When I introduced my Bill last July, the Minister for Disabled People, Welfare and Work indicated that change would be coming shortly. He confirmed in the House on 19 October last year that the Government would be changing the six-month rule following their review. However, all this time later, we are still waiting to hear exactly what it would be changed to and when that change will be introduced. If Ministers have made up their minds that change is needed, why is there any need for further delay? Why the long silence?
Every day the Government postpone an announcement on the outcome of their review, more people are diagnosed with a terminal illness and risk being unable to get fast-track support from the benefits system if they cannot prove they have less than six months to live. These people are facing exactly the kind of inappropriate medical and work capability assessment that the special rules for terminal illness are supposed to exempt them from before they can access the support they need. They also face huge delays in getting payments. The average wait for a first personal independence payment is now 16 weeks, at a time when someone’s illness may mean that they cannot work and have no other money coming in. These are people like Alan, who has terminal pulmonary fibrosis, and who told Marie Curie:
“When I was diagnosed, I was told I would have five years’ life expectancy, as an average. Day to day, it affects everything I do. I can’t get dressed by myself. I can’t go to the shop by myself. I get very breathless doing anything. When I first applied for PIP, they were very dismissive. One of the things they did was, because I walked from a lift to a room, which was about 10 steps—on that basis they judged I could walk 200 yards. Because I was refused PIP, I couldn’t get hold of things like a parking card or a discount for train travel. So, I was in receipt of no benefits at all, although I do have a terminal illness, which gets worse year after year, month to month.”
For some, that delay will mean they die without receiving any support at all. Between April 2018 and October 2019, 2,140 people who applied for PIP—only one of the benefits affected by this rule—had their claim turned down under the normal rules only to die within six months of making their claim. Many of them will have been terminally ill people unable to claim via the special rules because they could not prove they had six months to live.
Even when the DWP does accept a claim, that often comes too late. According to the DWP’s own figures, an average of 10 people die every day while waiting for a decision on their PIP claim. End-of-life charity Marie Curie estimates that that means more than 5,900 people have died waiting for a decision since the DWP announced its review. That is nearly 6,000 families put through needless distress and anguish, and more will face it every day because of a rule that the Government have already admitted needs to change.
That is families like Michelle’s. Her mum, who died aged 62 in 2018, was initially awarded zero points for PIP and told she was capable of working. She was hooked to a feeding tube 16 hours a day, seven days a week and weighed 32 kilograms when she died. She had several illnesses including Crohn’s, osteoporosis and terminal lung cancer, yet she was awarded nothing. Michelle took her mum’s case to a tribunal, but by the time the decision came back that her mother should be awarded maximum points for PIP, she had died. Michelle says:
“This should have been money that my mum had to make her final days better. It should never have gone as far as a tribunal.”
Dying people deserve to be treated with dignity by the benefits system. Nobody given the devastating news that their illness is terminal knows how long they have left—not their loved ones, not their doctor and not a DWP benefits assessor. However much time they have left should be spent living as well as they can for as long as they can, making memories with loved ones. It should not be spent worrying about money, filling in endless forms, being dragged to assessments and fighting for the support they need. As Madeleine Moon said back in 2018,
“The unknown time you have must not be spent worrying about accessing benefits or keeping a roof over your head; it must be spent in love, laughter, and taking the painful journey together with dignity and compassion.”—[Official Report, 18 July 2018; Vol. 645, c. 456.]
People living with terminal illness and their loved ones have been campaigning tirelessly for change for more than two years. Many of them will not have lived to see the change they have fought for: an end to the six-month and three-year rules and a change to the system to allow anyone who has received the devastating news from a clinician that they are terminally ill to get fast-tracked access to benefits via the special rules. The clinician’s judgment should be evidence enough.
We all understand that since the Government announced their review there have been unforeseen circumstances with covid-19, but people do not have time to wait further. For the past 19 months, they have been waiting in a frustrating limbo, told that change is coming but with no announcement in sight from Ministers. They, and the charities campaigning on their behalf, are understandably impatient with 19 months of warm words from the Government and promises that change is always coming soon. For many, soon is already too late and, with each day that passes, soon will be too late for many more.
I urge Ministers to do better than soon. Will the Minister give us a date today for when the outcome of the DWP review will be published, give the campaigners who have called for change some clarity and give us a timeline setting out when the Government will make the changes to the law, which they have already accepted are needed, without further delay?
The letter written by Rachel Reeves, the Shadow Chancellor of the Duchy of Lancaster, on 21 February 2021.
Dear Secretary of State,
I am writing today following the judicial review ruling yesterday by the High Court that the “Secretary of State for Health and Social Care acted unlawfully by failing to comply with the Transparency Policy” and that “there is now no dispute that, in a substantial number of cases, the Secretary of State breached his legal obligation to publish Contract Award Notices within 30 days of the award of contracts.”
In handing down the judgment, the Judge also said: “The Secretary of State spent vast quantities of public money on pandemic-related procurements during 2020. The public were entitled to see who this money was going to, what it was being spent on and how the relevant contracts were awarded.”
The Judge went on to say that if Government had complied with its legal obligations, there would have been the ability “to scrutinise CANs and contract provisions, ask questions about them and raise any issues with oversight bodies such as the NAO or via MPs in Parliament.”
Given this clear legal ruling, and recent serious stories of cronyism and waste at the heart of this Government’s pandemic procurement, I am writing to you today to ask you six questions which I hope you will urgently answer:
I know you will appreciate how important it is that taxpayers know how their money is being spent through these contracts, that the government wants to tackle claims of cronyism and that, given this ruling of unlawfulness, that the government and yourself will do everything possible to maximise transparency, accountability and scrutiny.
Many thanks,
Rachel Reeves MP
Shadow Chancellor of the Duchy of Lancaster
The comments made by Justin Madders, the Shadow Health Minister, on 19 February 2021.
This is the latest confirmation that our NHS workforce have gone above and beyond the call of duty for over a year now and at some point they are going to need to take a proper break.
The NHS came into the pandemic with a record 100,000 vacancies and a workforce already stretched to the limit.
It’s time Government listened to these warnings put in place a strategy to protect the people that make the NHS what it is.
The comments made by Matt Hancock, the Secretary of State for Health and Social Care, on 18 February 2021.
I am acutely aware of the lasting and debilitating impact long COVID can have on people of all ages, irrespective of the extent of the initial symptoms.
Fatigue, headaches and breathlessness can affect people for months after their COVID-19 infection regardless of whether they required hospital admission initially.
In order to effectively help these individuals we need to better understand long COVID and identify therapeutics that can help recovery. This funding will kick-start 4 ambitious projects to do just that.
The comments made by Helen Whately, the Minister for Care, on 18 February 2021.
I’m delighted to see such an incredible boost in this year’s applications, with more mature applicants helping to contribute to a diverse and truly representative nursing workforce. Thank you to everyone who has stepped up to support our health and social care services.
These are the nurses of the future who will help the NHS and social care recover from this pandemic and continue to deliver world-class care to patients for years to come.
These figures are a testament to the work of Health Education England and UCAS in highlighting nursing as a rewarding and accessible career path, as well as the remarkable achievements of all health and care professionals over the past year.
We’re another step closer to delivering 50,000 more nurses for our NHS and providing better healthcare for everyone.
The statement made by Matt Hancock, the Secretary of State for Health and Social Care, on 15 February 2021.
I would like to pay tribute to Dame Fiona Caldicott whose death has been announced by her family. Dame Fiona spent her entire career serving the NHS and medicine, working as a clinician in the early part of her career and latterly as the National Data Guardian for Health and Social Care.
In this role she was a phenomenal advocate for the public and was instrumental in making sure that the NHS treats the public’s health data with the respect it deserves. The fact that every NHS organisation in the country now has its own Caldicott Guardian to protect the confidentiality of people’s data is testament to all that Dame Fiona achieved.
I send my deepest condolences to Dame Fiona’s family, friends and colleagues.
The speech made by Jonathan Ashworth, the Shadow Secretary of State for Health and Social Care, in the House of Commons on 11 February 2021.
I thank the Secretary of State for advance sight of his statement. I suppose we should also thank Andy Cowper for advance sight of the White Paper.
We are in the middle of the biggest public health crisis that our NHS has ever faced: staff on the frontline are exhausted and underpaid; the Royal College of Nursing says that the NHS is on its knees; primary care and CCG staff are vaccinating and will be doing so for months ahead, including, possibly, delivering booster jabs in the autumn; and today, we learn that 224,000 people are waiting more than 12 months for treatment. This Secretary of State thinks that now is the right moment for a structural reorganisation of the NHS.
We will study the legislation carefully when it is published, but the test of the reorganisation will be whether it brings down waiting lists and times, widens access, especially for mental health care, drives up cancer survival rates, and improves population health. We are not surprised that the Secretary of State has ended up here. We warned Ministers not to go ahead with the Cameron-Lansley changes 10 years ago. It was a reorganisation so big that we could see it from space. It cost millions. It demoralised staff. It ushered in a decade of wasted opportunity and, of course, he voted for those changes and defended them in this Chamber, so, when he stands up, I hope that he will tell us that he was wrong to support them.
We have long argued for more integrated care, but how will these new structures be governed, how will they be accountable to local people, and how will financial priorities be set, because when something goes wrong, as tragically sometimes it does in the delivery of care, or when there are financial problems, such as the ones that we have seen at Leicester’s trust, where does the buck stop?
The Secretary of State is proposing an integrated care board tasked with commissioning, but without powers to direct foundation trusts, which spend around £80 billion and employ around 800,000 staff. He is suggesting a joint committee of the ICS and providers as well, but who controls the money, because it is from there that power flows? Both of those committees will overlap with a new third additional committee, the integrated care system health and care partnership, which includes local authorities, Healthwatch and even permits the private sector to sit on it. All these committees must have regard for the local health and wellbeing board plans as well. How will he avoid clashing agendas and lack of trust between partners, as we have seen at the ICS in Bedfordshire and Luton, for example? Nobody wants to see integrated care structures that cannot even integrate themselves. Legislation alone is not the answer to integration. We need a long-term funded workforce plan; we do not have one. We need a long-term, cross-governmental health inequalities plan; we do not have one. We need a sustainable social care plan; we were promised one on the steps of Downing Street and we still do not have one.
When the Secretary of State voted for the Cameron reorganisation 10 years ago, it was presumably because he wanted, in the words of the White Paper at the time, “to liberate the NHS”. Now he is proposing a power grab that was never consulted on by the NHS. It seems that he wants every dropped bedpan to reverberate around Whitehall again. He is announcing this just at the very moment when the NHS is successfully delivering vaccination, which is in striking contrast to the delivery of test and trace and of PPE early on where he was responsible. Again, we will look carefully at the legislation, but why is he so keen for these new powers? Why is he repealing his responsibility to set an annual mandate and bring it to Parliament?
The Secretary of State wants to intervene now in hospital reconfiguration plans, but why is he stripping local authorities of their power to refer controversial plans to him? With his new powers, will he reverse outsourcing? Will he end the transfer of staff to subcos? Will he bring contracts back in-house and block more outsourcing in the future? He is ditching the competition framework for the tendering of local services, while potentially replacing it with institutionalised cronyism at the top instead.
Fundamentally, how will this reorganisation and power grab improve patient care? The Secretary of State did not mention waiting times in his statement. It is mentioned once in the leaked White Paper. How will he bring waiting lists down? How will he improve cancer survival rates and widen access to mental healthcare, and by when? How will this reorganisation narrow widening health inequalities, and by when? Given that the Prime Minister insists that lessons cannot be learned from this pandemic until the crisis is over, why does the Secretary of State disagree with that and consider this reorganisation so urgent now?
The statement made by Matt Hancock, the Secretary of State for Health and Social Care, in the House of Commons on 11 February 2021.
Mr Speaker, I come to the House today to set out our White Paper on the future of health and care. The past year has been the most challenging in the NHS’s proud 72-year history. The health and care system as a whole has risen in the face of great difficulties. Throughout, people have done incredible things and worked in novel and remarkable ways to deliver for patients, and we in this House salute them all—not just the nurse who may have had to care for two, three or four times as many patients as he would in normal times, and not just the surgeon who may have been called to treat patients beyond her normal specialism, but the managers across health and care who have come together in teams, as part of a health family, at local and national level; the public health experts, who have been needed more than ever before; and the local authority staff who have embraced change to deliver for their residents—and from all, a sense of teamwork that has been inspiring to see.
As a citizen, I care deeply for the whole health and care family, the values they stand for and the security they represent. They are there for us at the best of times, and they are there for us at the worst of times. As Health Secretary, I see it as my role sometimes to challenge but most of all to support the health and care family in their defining mission of improving the health of the nation and caring for those most in need.
I come before the House to present a White Paper based firmly on those values, which I believe are values that our whole nation holds dear. The White Paper is built on more than two years of work with the NHS, local councils and the public. At its heart, this White Paper enables greater integration, reduces bureaucracy and supports the way that the NHS and social care work when they work at their best—together. It strengthens accountability to this House and, crucially, it takes the lessons we have learned in this pandemic about how the system can rise to meet huge challenges and frames a legislative basis to support that effort. My job as Health Secretary is to make the system work for those who work in the system—to free up, to empower and to harness the mission-driven capability of team health and care. The goal of this White Paper is to allow that to happen.
Before turning to the core measures, I want to answer two questions that I know have been on people’s minds. First, are these changes needed? Even before the pandemic, it was clear that reform was needed to update the law, to improve how the NHS operates and to reduce bureaucracy. Local government and the NHS have told us that they want to work together to improve health outcomes for residents. Clinicians have told us that they want to do more than just treat conditions; they want to address the factors that determine people’s health and prevent illness in the first place. All parts of the system told us that they want to embrace modern technology, to innovate, to join up, to share data, to serve people and, ultimately, to be trusted to get on and do all that so that they can improve patient care and save lives. We have listened, and these changes reflect what our health and care family have been asking for, building on the NHS’s own long-term plan.
The second question is, why now, as we tackle the biggest public health emergency in modern history? The response to covid-19 has accelerated the pace of collaboration across health and social care, showing what we can do when we work together flexibly, adopting new technology focused on the needs of the patient and setting aside bureaucratic rules. The pandemic has also brought home the importance of preventing ill health in the first place by tackling obesity and taking steps such as fluoridation that will improve the health of the nation. The pandemic has made the changes in this White Paper more, not less, urgent, and it is our role in Parliament to make the legislative changes that are needed. There is no better time than now.
I turn to the measures in detail. The first set of measures promote integration between different parts of the health and care system and put the focus of health funding on the health of the population, not just the health of patients. Health and care have always been part of the same ecosystem. Given an ageing population with more complex needs, that has never been more true, and these proposals will make it easier for clinicians, carers and public health experts to achieve what they already work hard to do: operate seamlessly across health and care, without being split into artificial silos that keep them apart.
The new approach is based on the concept of population health. A statutory integrated care system will be responsible in each part of England for the funding to support the health of their area. They will not just provide for the treatments that are needed, but support people to stay healthy in the first place. In some parts of the country, ICSs are already showing the way, and they will be accountable for outcomes of the health of the population and be held to account by the Care Quality Commission. Our goal is to integrate decision-making at a local level between the NHS and local authorities as much as is practically possible, and ensure decisions about local health can be taken as locally as possible.
Next, we will use legislation to remove bureaucracy that makes sensible decision making harder, freeing up the system to innovate and to embrace technology as a better platform to support staff and patient care. Our proposals preserve the division between funding decisions and provision of care, which has been the cornerstone of efforts to ensure the best value for taxpayers for more than 30 years. However, we are setting out a more joined-up approach built on collaborative relationships, so that more strategic decisions can be taken to shape health and care for decades to come. At its heart, it is about population health, using the collective resources of the local system, the NHS, local authorities, the voluntary sector and others to improve the health of the area.
Finally, the White Paper will ensure a system that is accountable. Ministers have rightly always been accountable to this House for the performance of the NHS, and always will be. Clinical decisions should always be independent, but when the NHS is the public’s top domestic priority—over £140 billion of taxpayers’ money is spent on it each year—and when the quality of our healthcare matters to every single citizen and every one of our constituents, the NHS must be accountable to Ministers; Ministers accountable to Parliament; and Parliament accountable to the people we all serve. Medical matters are matters for Ministers. The White Paper provides a statutory basis for unified national leadership of the NHS, merging three bodies that legally oversee the NHS into one as NHS England. NHS England will have clinical and day-to-day operational independence, but the Secretary of State will be empowered to set direction for the NHS and intervene where necessary. This White Paper can give the public confidence that the system will truly work together to respond to their needs.
These legislative measures support reforms already under way in the NHS, and should be seen in the context of those broader reforms. They are by no means the full extent of our ambition for the nation’s health. As we continue to tackle this pandemic, we will also bring forward changes in social care, public health, and mental health services. We are committed to the reform of adult social care, and will bring forward proposals this year. The public health interventions outlined in this White Paper sit alongside our proposals to strengthen the public health system, including the creation of the National Institute for Health Protection, and last month we committed in our mental health White Paper to bringing forward legislation to update the Mental Health Act 1983 for the 21st century.
This landmark White Paper builds on what colleagues in health and care have told us, and we will continue that engagement in the weeks ahead, but it builds on more than that: it builds on this party’s commitment to the NHS from the very beginning. Eagle-eyed visitors to my office in Victoria Street will have noticed the portrait of Sir Henry Willink, who published from this Dispatch Box in 1944 the White Paper that set out plans for a National Health Service, which was later implemented by post-war Governments.
Throughout its proud 72-year history, successive Governments have believed in our health and social care system and strengthened it for their times. I believe the NHS is the finest health service in the world. I believe in the values that underpin it: that we all share responsibility for the health of one another. Its extraordinary feats this past year are unsurpassed even in its own proud history. Once again, we must support the NHS and the whole health and care system with a legislative framework that is fit for our times and fit for the future. We need a more integrated, more innovative and more responsive system, harnessing the best of modern technology and supporting the vocation and dedication of those who work in it. This White Paper is the next step in that noble endeavour, and I commend this statement to the House.