Health and Care Bill (Twenty First sitting) Debate
Full Debate: Read Full DebatePhilippa Whitford
Main Page: Philippa Whitford (Scottish National Party - Central Ayrshire)Department Debates - View all Philippa Whitford's debates with the Department of Health and Social Care
(3 years ago)
Public Bill CommitteesI beg to move, That the clause be read a Second time.
This is another Ronseal new clause: it does exactly what it says on the tin—it seeks to create legal protection for the use of the title “nurse”. The title “registered nurse” is protected, but “nurse” is not, meaning that, legally, anyone can call themselves a nurse. Under current legislation, people could operate under that title even if they had no nursing qualifications or experience, or had been struck off. To protect the public, the title should be limited to those, such as registered nurses and dental nurses, who are registered with professional regulators. That would put it on a level with other titles, such as paramedic and physiotherapist, which are limited to those on professional registers.
The issue of the title of nurse not being protected in law has long caused concern to the profession. There are many examples where the title has been abused. We have seen people campaigning for election calling themselves nurses when they were not—I appreciate that that is outside the Minister’s responsibility, but it shows the power of the title, its significance and the risk we are trying to deal with through this new clause.
Earlier this month, an anti-vaccination campaigner who denies the existence of covid-19 told Nursing Times that she planned to continue to call herself a nurse despite having been struck off by the Nursing and Midwifery Council for putting the public at risk of harm. Professor Judith Ellis, chair of the Tropical Health and Education Trust and former interim chair of the NMC, has campaigned for years for protection of the nurse title, and we commend her for her work. She said:
“It is totally unacceptable that when someone in the UK describes themselves as a ‘nurse’, the patient or their relatives have no way of knowing, or indeed checking, if that individual has the knowledge or skills to safely care for them or their loved ones. The title ‘nurse’ needs to be protected.”
Nursing is the most trusted profession in the UK, yet someone ill or vulnerable could trust a person calling themselves a nurse and that person might be nothing of the sort. NHS England’s chief nursing officer, Ruth May, has committed her support to protect the title of nurse in UK law. She said:
“The protection of a professional title provides assurance that someone using that title is competent and safe to practise”,
adding that she is
“committed to doing all we can to strengthen protection of the public.”
I welcome anything the Minister can say about this issue; I do not know whether the Department is considering it, but I have heard rumours that it might be. We have talked on a number of occasions about patient safety, transparency and openness, and this measure would be entirely consistent with those aims. Can the Minister give us some comfort or confidence that we might be able to make some progress on this important issue?
I rise to support what the shadow Minister said. It has indeed been an area of contention for many years not only that nurses who have been struck off can use the title but that the title is used loosely. We touched on the same issue when we talked about regulation and about aesthetic procedures: when these titles of doctor, and particularly nurse, are used the public have a perception of what that means. They assume it means a registered and regulated practitioner, and therefore the patient is given far too high a degree of trust in the person simply from the use of that title. It should be a protected title.
As has been set out, the new clause would protect the title of nurse by making it an offence for a person to use that title unless they were registered with the Nursing and Midwifery Council. I entirely understand the intention behind that; as the shadow Minister and the SNP spokesperson have set out, a title such as that comes at any time, but particularly after the past year and a half, with an expectation of the qualifications and duty of care that sit behind it, and brings with it trust. Therefore, it is extremely important that that trust is not in any way abused. I am sympathetic to the intent behind the new clause; I know it is something my constituency neighbour the shadow Secretary of State, the right hon. Member for Leicester South (Jonathan Ashworth), has also spoken about in recent weeks.
The title of registered nurse is protected in law but, as the hon. Member for Ellesmere Port and Neston rightly says, the title of nurse itself is not, given its use across multiple professions, including dental nurses, school nurses, veterinary nurses and so on. As the interim chief nursing officer for Scotland has pointed out, the impact of any change on other groups currently using the title of nurse outside healthcare settings would need to be carefully considered. Quite rightly, the interim CNO said that there is an issue, but it needs to be carefully considered and calibrated.
I am sympathetic to the principle that protection of the title of nurse would be seen as a positive step by the profession, stakeholders and the public. I am also aware of concerns about the potential for confusion in this regard, as highlighted by the petition brought forward by Alison Leary, and I can see the benefit in providing reassurance and clarity to patients and professionals. Given the complexities inherent in making “nurse” a protected title, we need to do further work and gather further evidence to better understand the case for change and the potential impact on some of those other perfectly legitimate professions that use the title.
I recognise that the term is also used as highlighted—for example, “nursery nurse”. However, veterinary nurses and dental nurses are registered professionals, and therefore that is outwith the group we are talking about. I can see that there needs to be discussion around the more social “nursery nurse”. School nurses are also nurses.
They are, but my point was the difference between registered nurses and just using the title “nurse”. The question is how, in legal terms, we catch that. I accept the hon. Lady’s point that they are all registered nurses. However, we have to make sure that, in drafting, the legislation would not inadvertently catch people who may well be perfectly legitimately registered, as she says, but could potentially be caught if we did not draft or consider the measure carefully.
I recognise the importance of drafting, but obviously the new clause is seeking to establish that the title “nurse” could be used only by nurses registered with the NMC, dental nurses and veterinary nurses—so that it could not just be used as a title by someone who is not on the register.
I go back to the point I made: there are some perfectly legitimate professions—where there is an expectation and understanding of what they do and a respect for what they do—who use that title, as she alluded to. That is why we have to think a little more carefully about how we might do that, and whether it is the most effective way of assuring and enhancing patient safety.
Protection of title is only one part of the protection regime; it is important, of course, but there are other parts. We should also look at prosecutions of protection of title offences, which are extremely rare; we need to look at that in the context of how that might be enforced. Part of the reason for that is the availability of offences such as fraud by false representation that carry more substantial penalties including custodial sentences, which, I suspect, are sometimes the mechanism used to prosecute in such cases. Depending on the context in which the title is used, other legal action could be taken against a person, including criminal proceedings, civil proceedings and employment disciplinary proceedings, particularly where the person used the title to gain work or employment. There is also the opportunity to prosecute employers who hold their staff out to be regulated healthcare professionals when they are not.
To give some succour to the hon. Member for Ellesmere Port and Neston, we are committed to reviewing the protection of titles as part of the ongoing Government review of the regulation of healthcare professionals.
I wonder whether the hon. Gentleman shares my concerns after leaving the European Union about access for clinicians, and indeed their patients, to the European reference network, which helps to provide advice and treatment and has co-ordinated research, through the European Medicines Agency, into these rare, often childhood, diseases? They can be studied much more easily in a population of 500 million than one of 60 million.
I am grateful for that contribution. It is axiomatic that, if we are talking about diseases that affect small populations in this country, growing the field of people who are affected so that we can undertake better research, trials and treatment can only be a good thing. I hope that the Minister might touch on how he is ensuring that we are not disadvantaged in that way. When we add up the nearly 8,000 diseases, we are talking about 3.5 million people—one in 17, so one person on the Committee, basically—who will in their lifetime be affected by a rare disease. So actually they are not so rare at all. It is really important that we are meeting that group of people’s needs, but access to medicines and medical devices remains a problem, which is why such reporting for rare conditions is so important.
At the moment, approved medicines are available for only 5% of rare diseases and, even where licensed treatments exist, patients can face an uphill battle in accessing them on the NHS. I am sure that most of us will have at least one case of a young constituent who desperately needs medicinal cannabis to treat epilepsy. There is a political consensus that this is the right thing to do, and we ought to do it. That has been a settled matter for at least three years now, but frustratingly it is still not getting through, and that is a pattern across rare diseases. Perhaps that points us to the conclusion that the current assessment process is not quite accounting for the unique challenges presented by rare and ultra-rare diseases.
I do not think that the Minister will want to be drawn on the National Institute for Health and Care Excellence methods review, because we are in that process. I have spoken in multiple debates about my enthusiasm for NICE, and its processes and expertise, but clearly something is missing. My working theory is around evaluation. Again, if we have a small patient population, the data is noisy and there are higher degrees of uncertainty due to the small sample sizes. That leads us nicely to the point that the hon. Member for Central Ayrshire made about trying to grow those pools. At the moment, we are unable to get first-in-class treatments in many cases, which we should want to do something about.
Herein lies the squeeze, as the medicines for rare and ultra-rare diseases are often assessed by processes that were designed for drugs with larger target populations. The statistics are a bit of an apples-to-oranges comparison, which creates a severe disadvantage. The purpose of the new clause is to get the Secretary of State to report generally on how we are ensuring that we are world leading and meeting population need, and then to drill down within that on how we are ensuring that the system for rarer conditions is fit for purpose. As I say, I am conscious that the methods review is ongoing, but I hope that the Minister might at least give us a sense of the general policy direction in this area, and what we might look to do differently in the future.
I beg to move, That the clause be read a Second time.
I cannot quite remember on what day this new clause was submitted; it is towards the end of the new clauses but not at the very end, so that probably carbon dates it by 10 days or so. Nevertheless, we had some news in this space from yesterday’s Budget. We are in the strange situation of having seen effective early intervention services, such as Sure Start, take a clobbering for a decade, and then getting paid back pennies on the pound and being supposed to feel grateful for it. We are not. Nevertheless, there needs to be a commitment at all levels of Government and local government—and, in this case, integrated care boards—to have a real focus on early years.
The first 1,001 days of a child’s life, from conception to age two, are crucial. Getting things right in this period can determine what kind of life a child has and their health, wellbeing, cognitive function and psychological make-up. During those early years, a baby’s brain grows rapidly, and it doubles in size within the first year of life. As is so well established, child development is influenced by early experiences and environment, which means that it is so important to ensure that little ones in our communities get what they need—care, nurture and support—while ensuring that they are protected from neglect, harm and stress.
As the Government’s strategy in this space recognises, getting things right impacts not just on the lives of our children, but on our entire society. By ensuring that children get what they need at an early age, we can target some of the big issues that we have talked about for the last two months in this Committee: physical and mental health issues, pressures on the NHS, crime and antisocial behaviour, and drug and substance abuse. So much of that leads back to the early stages in life, and this is a matter of established science. There is no doubt that in this country, we are not very good at doing something about that. Six months or maybe even a year ago—time flies—we had a fantastic Westminster Hall debate, led by the right hon. Member for South Northamptonshire (Dame Andrea Leadsom), who chaired a very good review in this space.
There is barely a leaf’s width of disagreement on this issue between right hon. and hon. Members of all political persuasions. The common diagnosis for why we have not made more progress is that we know that such things save public services money in a generation’s time, but we cannot demonstrate that in a cashable savings way that passes Treasury processes. I am afraid that I did not see anything yesterday to suggest that that fight is yet being won, and I hope the Minister and his colleagues are doing everything in their power to argue for early interventions. Frankly, I would argue that for pretty much all Members present, the bulk of the returns will come when someone else is sitting in our seats and our roles are somebody else’s dreams, but that should not stop us acting, because it is so significantly in the national interest and in the interests of our communities.
There are huge inequalities. The most basic health statistic is that a child born in my city will live for seven fewer years than one born in the City of Westminster—never mind the yawning chasm of almost twice that in healthy life expectancy. That is the result of smaller inequalities that all add up to different life paths: family income, financial stress, smoking and alcohol use, and access to care and services. We know that the 1,001 critical days from conception are the moment to offer really good-quality support. Families receive support from a wide range of services, including maternity, health visiting and early years, and perhaps children’s social care, mental health and paediatrics.
As well as the inequalities, there is complexity. I have mentioned five different organisations with five different uniforms, five different organisational plans and five different organisational cultures. Someone has to pull that together. We have been told throughout proceedings on the Bill that that is exactly what integrated care partnerships are here to do, so let us put a responsibility on them to do so, and to have a plan. I dare say—the Minister might say this himself—that they are more than likely to want to do that themselves, and that would be a very good thing, but I do not think we can allow variance. This should be important for everybody and all footprints should be doing it, so that the first 1,001 days are given priority in new health systems. That would have a significant impact on the long-term health and wellbeing of our country.
I rise in support of the new clause. It is important to shift the narrative from what is often a structural focus on the NHS, and catching people when they fall, to looking at wellbeing and population to allow people to be healthier and live higher-quality lives for longer.
The hon. Member for Nottingham North mentioned the slowing down of improvement in life expectancy and the variation in life expectancy, but the bigger issue is the failure to improve healthy life expectancy. The 20 years of unhealthy life expectancy faced by many across the UK, particularly in more deprived areas, put pressure on the NHS, and we have seen that come home to roost over the last decade.
A lot of those health issues, or unhealth issues, are laid down in childhood. I am vice-chair of the all-party parliamentary group for health in all policies, which conducted an inquiry into the impact of child poverty. A figure from the Faculty of Public Health that has stayed with me is that the UK loses 1,400 children a year as a direct result of poverty, including by immature birth, small birth weight, foetal alcohol syndrome, fires, road traffic accidents, alcohol and drugs, violence and suicide. That is the number of students in a large secondary school, and if the roof of a large secondary school were collapsing every single year, we would do something about it.
Often, the time to do something about that is in the 1,001 days from conception forward, as the hon. Gentleman said. That means looking at maternal health and nutrition, which is why the early years collaborative in Scotland led to the Best Start grants to mothers and children at birth, on entering nursery and on entering school.
One internationally used measure on the health of our youngest children is infant mortality—death perinatally or in the first year. In 2014, England and Scotland had the same rate of 3.6 per 1,000 live births. In Scotland, we have managed to drive the rate down to 3.2, but in England, it is currently at 3.8. In some poorer areas of the UK, the rate is worse than in parts of the global south and the developing world. That is a brutal statistic.
We talked yesterday about maternal and infant deaths, but this also relates to the attainment gap and other issues faced throughout life by those who struggle in childhood. Investing in early years saves money in the long term. That might be the pitch to the Treasury: if we gave more children a decent start in life, fewer would struggle in the education system, fewer would struggle to get jobs, and fewer would be trapped by addiction or caught in the criminal services system. Instead of picking up the pieces later through the NHS or other public services, surely we should be investing in the best start in life for all our children.
We believe that the creation of integrated care boards and integrated care partnerships represents a huge opportunity to support and improve the planning and provision of services to ensure that they are more joined up and better meet the needs of expectant parents, parents, infants and young children.
We acknowledge that new clause 51 is intended to ensure that the needs of expectant parents, infants and young children are expressly considered by ICBs and ICPs through the development of a tailored strategy. We are working on bespoke guidance, which will set out the measures ICBs and ICPs should take to ensure that they will deliver for babies, children and young people. That will cover the importance of the ICP integrated care strategies having measurable objectives for babies, children and young people.
The strategy must also set out how assessed needs for the area are to be met. The Department is working with NHS England and NHS Improvement and the Department for Education on the drafting of this bespoke guidance, and we will work with stakeholders in the upcoming months on refining the guidance prior to publication.
As per our general approach to the Bill, although we are clear about the statutory functions that will be conferred on ICBs—as they are currently on clinical commissioning groups—including on children’s safeguarding and special educational needs and disabilities, when it comes to implementation, we want to provide local areas with the flexibility to determine what will work best for their systems. We fear that over-prescribing system approaches in the Bill will make it harder for systems to design the approaches that will work best in their areas. That is why we believe the wording, as currently drafted, is appropriate.
I beg to move, That the clause be read a Second time.
In February 2018, the noble Baroness Cumberlege was asked to carry out the independent medicines and medical devices review into the experiences of people—generally women—who had been treated with Primodos, sodium valproate or pelvic mesh implants. In very many cases, they had to battle for decades to be heard. They were gaslit, belittled and ignored at every turn. Some of the ways in which they were treated were just astonishing, and so upsetting. However, through that report they got their deliverance. They were vindicated: what they said had happened to them had happened to them—even though they had not been believed—and it should not have done. Acknowledging the pain that had been caused to these families was a big start in helping them come to terms with what they had experienced.
The excellent review team set out nine ways in which things would be made better, or at least a little bit easier, for those people now, and to try to prevent future incidents. Those nine recommendations should have been accepted in full. Instead, we have seen from the Government a pattern of accepting things that I suspect they were already keen to do, but otherwise taking the families for a long walk when it comes to the harder and more significant things that the Government clearly do not want to do. In aggregate, it has become a refusal to do right by these families, and that is a really poor decision.
This new clause seeks to attend to that by saying that within six months, the Secretary of State must publish a report containing a plan for the implementation of the recommendations in full. Of the nine, only four are being implemented in full and, frankly, that is not good enough. I am pleased that there has been an apology, and the families were too. I was also pleased to see legislation for a patient safety commissioner. We were lucky that the Medicines and Medical Devices Act 2021 was in front of us at that time, because it gave us a moment to introduce that and a devices database, which the hon. Member for Central Ayrshire and I pursued during proceedings on that Bill. Those things have a bit further to go, but they were significant, as were the promises of cultural reforms at the Medicines and Healthcare products Regulatory Agency. We will wait to see meaningful change there. With the remaining five recommendations, there has been a mixture of in-principle acceptance, partial acceptance and, in some cases, outright denial. I do not think that is good enough, and the new clause seeks to change that.
These are the bits that we are still missing. Recommendation 3 calls for:
“A new independent Redress Agency for those harmed by medicines and medical devices”.
The Government responded that they did not accept that. The problem is that families are therefore left to rely on conventional civil and legal routes. Those are expensive and long, and who do the families sit against in the courtroom? Very big companies with very big legal teams, so there is a significant imbalance. The whole point is that, as recommendation 3 goes on to state:
“The Redress Agency will administer decisions using a non-adversarial process with determinations based on avoidable harm looking at systemic failings, rather than blaming individuals.”
That would have been really significant, but we do not have that. Instead, families are left stuck in the court system for as long as they can stick at it.
Recommendation 4 states:
“Separate schemes should be set up for each intervention—HPTs, valproate and pelvic mesh—to meet the cost of providing additional care and support to those who have experienced avoidable harm and are eligible to claim.”
Again, the Government do not accept that. These families meet exceptionally challenging needs day after day. Some have lost their house; some have had failed relationships; and all struggle with mental health, or certainly distress, as a result of what has happened, and we are not doing enough to help them. This should have been done, if not on day one, at the very first possible moment for support, rather than us expecting them to fall back on the conventional system, as they did. What have they gained by their vindication?
Recommendation 5 states:
“Networks of specialist centres should be set up to provide comprehensive treatment, care and advice for those affected by implanted mesh; and separately for those adversely affected by medications taken during pregnancy.”
The Government accept that only in part; it is particularly with regard to valproate that those affected will not get those centres. I will listen carefully to the Minister’s justification for that. I understand that valproate is different, in the sense that its use is ongoing in certain situations where that remains medically appropriate. However, the lack of specialised knowledge is a real issue. If there is not specialisation, we need a real sense that there is a universal step change in knowledge and experience in this area to give us greater comfort.
Recommendation 8 states:
“Transparency of payments made to clinicians needs to improve. The register of the General Medical Council (GMC) should be expanded to include a list of financial and non-pecuniary interests for all doctors”.
That is very basic. There were relationships between clinicians and big drug companies that were unknown to the families when certain treatments were suggested. The Government accept the recommendation in principle, but will not use the General Medical Council model, preferring to go practice by practice. That is big mistake. Our constituents can go to one easy, obvious place—our website—to find out our exact financial interests if they have concerns or just want to know them. We ought to be able to do the same, through the GMC, when it comes to doctors. Again, there is an unwillingness to move quickly enough to resolve these issues.
Finally, it remains surprising that the Government have not availed themselves of recommendation 9. I will listen carefully to the Minister’s response on this point. It states:
“The Government should immediately set up a task force to implement this Review’s recommendations. Its first task should be to set out a timeline for their implementation.”
Of course there should be a taskforce, including families and the broader aspects of the state, to do that. Again, the Government say they accept the recommendation in part, but the reality is that they have no plans to establish an independent taskforce. There is a patient reference group, and we of course support its work, but it is not in control; it is not at the table. The problem is that these things were done to families; they had no agency and no say. The solutions that come out of this cannot follow that same model. Once again, families are having things done to them, rather than being worked with.
I meet representatives of these groups frequently, as I know colleagues do. I like meeting them. These are good people who have been through incredible things and have extraordinary dignity and courage, not to mention that they are brilliant campaigners. They are probably sick of seeing me, and I would rather see them in happier circumstances. When I ask them what is next, they say that they are campaigning again. They campaigned over many years to be listened to, and were proven right in the most absolute terms, but they feel they have to campaign again to get the justice that should flow from that report and from their vindication. What an extraordinary demonstration of how we have let them down. They fought for too long. It is time that we stood up for them and did right by them by implementing the recommendations in full; otherwise we fail them again. I hope to hear of significant progress from the Minister.
I support the new clause. For a surgeon, knowing that an operation that they were trained to carry out, and performed in good faith, has caused harm is one of the worst things that can happen. I remember how I felt in the mid-1980s when we began to realise the impact of contaminated blood. It had a huge impact on how I operated. I used special diathermy techniques to avoid blood transfusion in all elective circumstances, and that is something I carried on throughout my time doing breast cancer surgery.
In this case, there may well have been doctors who were dealing with device companies and so on—that regulatory declaration is absolutely needed—but there will be a much greater number of surgeons who were using a device that was licensed and was given to them as the correct, safe device to use.
I find it shocking that although the report was commissioned by the Government, they have accepted fewer than half of its recommendations. The others directly relate to patients who have suffered harm, whether that is the women who had vaginal meshes inserted, or the mothers of children who were harmed by the use of Primodos or sodium valproate.
Sodium valproate is still an excellent anti-epileptic and will not disappear, but it is not a matter for specialist centres. It is so widely used that it is critical that within primary care and on product boxes it is made clear that women who are looking to conceive or who are of child-bearing age should not be left on Epilim; that should be discussed with them right from when they are young teenagers, so they can think about the impact later on.
The recommendations that have not been accepted are not to do with reorganising licensing, or a yellow card system; they are all recommendations that relate to women. That is really disappointing. The redress for them—the setting up of specialist centres to try to repair the damage as far as possible—is what is not being provided. The Government should look at the fact that those are the recommendations they have skirted around and not accepted. These women and the children affected have gone through enough.
It is quite right that we articulate once again the suffering that was the genesis of the review. The hon. Members for Nottingham North and for Central Ayrshire spoke with passion on the issue. We are talking about procedures that had a dreadful impact on individuals and their families.
The Government recognise the effect that the independent medicines and medical devices safety review, and the lived experiences behind it, has had on all the women and children impacted, and their families. That is why, on the day after the review was published, the Government issued a full and unreserved apology on behalf of the health and care sector for the time it took to listen and respond.
I am grateful to Baroness Cumberlege for all the time and effort she put into her report. As hon. Members will be aware, that sentiment was expressed at the time by the Minister responsible for responding to the report, who is now of course the Secretary of State for Digital, Culture, Media and Sport.
The Government published our response to the review on 21 July this year, after carefully considering each of the review’s nine strategic recommendations and the 50 actions for improvement in greater depth. Our response set out an ambitious programme for change that, at its core, is focused on improving patient safety.
The Government accepted the vast majority of the strategic recommendations and actions for improvement. I reassure the Committee that we are committed to making progress on all accepted recommendations at pace. That is why, in our response to the review, we committed to publishing an update on our progress in implementing the accepted recommendations 12 months after the initial response. I know that hon. and right hon. Members from across the House will rightly vigorously continue to hold the Government to account on that. I reassure them that the Government take very seriously our responsibility to implement the accepted recommendations at pace.
Many of the recommendations will introduce large-scale changes to patient safety, and we have a duty to get their implementation right. I hope it will encourage hon. Members to hear that the Government have already made strong progress on implementing many of the accepted recommendations of the review. I will turn to those in more detail, because I think it is important that we update the Committee and the House.
The hon. Lady may be about to agree with me; she is welcome to do so.
When we debated vaginal mesh, Primodos and valproate in the Chamber, one of the big issues that came up—I certainly spoke about it—was the issue within medicine, with doctors. What work will be done with Health Education England and medical schools to ensure that young student doctors, and doctors in early training, recognise this terrible dismissal of women’s concerns about all aspects of their health? The menopause is a classic, but there are many others.
The hon. Lady is absolutely right to raise that. We need to get across, loud and clear, to our future clinicians almost right from the start—from their training and early education—the message that everyone’s health concerns matter equally, subject, obviously, to clinical decision making. I hope and believe that HEE and others will engage with that process in the context of the women’s health strategy. We do not want it to be a document that just sits on a shelf, or want it to look at issues in a siloed way; it should look at them across the piece. Over many years, there have been strategies on particular aspects of health. In the strategy, we seek to bring together a whole range of factors, so that we can look at how women interact with the healthcare system, and how to meet their needs holistically.
We want to maximise the independence of ICBs, so that they function in the way that best suits the needs of their patients and their organisations. We are therefore keeping their legislative obligations proportionate; that brings us back to a debate that the Committee has had multiple times about the permissive nature of the legislation. I agree that appropriate representation is essential in healthcare planning. I fear that the new clause is overly specific and not necessarily in keeping with the obligations on ICBs set out in clause 19 on general functions.
The Bill already puts obligations on ICBs that will help to ensure that relevant groups are fully represented and consulted in decision making. In particular, ICBs will need to ensure that they have taken appropriate advice from a broad range of those with professional expertise. As the work of ICBs will inevitably cover reproductive health, that requirement ensures that relevant groups are included in this work. Furthermore, as we discussed in the opening sittings of the Committee, local areas will have the flexibility to determine any further membership of the ICB beyond the minimum for which we have legislated. That discretion will allow local areas to ensure appropriate representation.
On working in partnership with the non-profit sector and local community groups, I recognise the essential role that those organisations and groups play, and agree that they should be involved in strategic decision making where appropriate. Each ICB and their partner local authorities will be required to establish an integrated care partnership. We expect the ICP to bring together organisations from across health, social care and public health, and representatives from wider areas where appropriate. That could include organisations from the voluntary and community sector. The ICP will be tasked with promoting partnership arrangements and developing a plan to address the health, social care and public health needs in its area. As that will include reproductive healthcare needs, we would expect relevant local groups to be represented. The ICB and local authorities will have to have regard to that plan when making decisions. That will enable more joined-up planning and provision, both in the NHS and by local authorities, which will enhance the services that people receive.
Existing and proposed duties already address the concerns underlying the new clause and ensure effective public involvement. We have concerns about imposing additional duties on individual services. Our approach enables local NHS bodies, supported by national guidance, to decide how best to involve patients and the public in the planning of commissioning arrangements, and in developing and considering proposals to change them, so we are not convinced that the additions in the new clause in respect of reproductive healthcare are necessary.
I beg to move, that the clause be read a Second time.
I keep going, Ms Elliott. Again, you can perhaps file this under gluttony for punishment. I do not intend to talk for very long about this new clause. I am sure that the Minister will be able to give us comfort easily on the point of new clause 54. It is just to develop the point about data one last time before our carriages turn into pumpkins.
A specific part of the Bill deals with data, and we had some very good conversations at that point. I will not repeat any of that. I will explain what I am chancing my arm at in new clause 54. I talked previously about systems and the problems with systems talking to one another. Here, we are asking integrated care boards to develop
“single whole-system IT systems”.
That is perhaps at the top end in terms of what should be aspirational and what is in fact achievable, but I do want to pursue the point a little.
Data is critical, as we have said before, in driving improvements. NHS England’s own website talks about the need to use it to improve services and decision making, to identify trends and patterns, to draw comparisons, to predict future events and outcomes and to evaluate services. But to do that, we have to have some sense of consistency. I will not repeat the arguments around the General Data Protection Regulation—we had those at length—but that shows the challenges if we do not get it right.
Going down to ICS level, if we are going to have a system that really does harness all the information, we need systems that talk to one another. Therefore, the prescription in proposed new subsection (a) is that it is a single system. As I have said, that is the stretch target. What I am hoping to get from the Minister is a sense of where he thinks this will land. Is it the same organisations using the same systems but trying to find a new way to do them, or will there be some new, novel approach to how we support footprints to do that? It is an established fact that data is going to be really important to local systems, so we want to give them the fairest wind to make the best use of it that they can.
On new clause 54, I just want to speak to proposed new subsection (d)—the use of data to assess performance against outcomes. Between 2009 and 2019, there was really no significant national audit of quality of breast cancer services in England, even though some of that audit had been carried out in previous years. Part of that was due to the fracturing of the system from the social care Act. There might be only one breast unit within an area, and quality was left to commissioners. How can commissioners measure whether a local breast unit is treating people properly or achieving the aspired-to targets?
In Scotland, 19 of the commonest cancers are audited; I was involved in developing the breast cancer standards in 2000, and they have been updated many times since. They are assessed annually with an annual peer review conference, where clinicians will openly discuss the challenges they face and therefore will share the solutions many of them have come up with. The clinical things that we know will affect the survival and outcomes of our women in the future are all set as national benchmarks. It is important that, while data would be collected locally, it is benchmarked against national standards.
The Getting It Right First Time project was restarted in England a few years ago but, to my knowledge, although the Getting It Right First Time for breast cancer report was completed at the end of 2019, I have not seen it published. That appeared to be due to the election in December 2019; perhaps the Minister can clarify whether the breast cancer GIRFT report has now been published, when it might be published and what other GIRFT reports have come out.
The problem is that, even if that report were published now, two years after its completion, it would largely be based on data from 2018, and therefore clinicians would shrug their shoulders and say, “Out of date.” It is important that data is used in a timeous manner to audit as quickly as possible, so that the audit loop can be closed and services improved. Having led on this process in Scotland, I saw the change in standards between 2001, when we began the first assessment, and 2005, and it is an incredibly satisfying, not frightening, thing for clinicians to see year on year the quality of care delivered by their unit driven up. There must be national standards, but local audit.
This new clause would create an obligation on ICBs to develop system-wide data-sharing IT systems. It would also require them to set and report on targets linked to outputs from this system. I recognise the importance of effective IT systems for the efficient delivery of services and for holding systems to account. However, we must set that against seeking to maximise the independence of ICBs to function in a manner that best suits the needs of their patients and organisations.
The obligations set out in the Bill are designed to establish a framework which ensures that ICBs fulfil their functions properly, while granting them as much discretion as possible in how they do so. The provisions in the Bill strike the balance between conferring the necessary duties and functions on ICBs to operate safely and effectively, and avoiding being overly prescriptive in any specific area. By placing too many statutory duties on ICBs, the risk is that innovation and locally led solutions may be stymied and focus may be taken away from their primary function of arranging for the provision of health services.
Of course, ICBs should be committed to improving patient pathways. However, we believe the duties already set out in the Bill are sufficient to ensure this happens. Further to the requirements set out in the Bill, there are already specific relevant provisions elsewhere in legislation. Section 251B of the Health and Social Care Act 2012 places a duty on certain health or social care organisations, which would include ICBs, to share information about an individual with certain persons where this will facilitate the provision of health services or care to the individual and is in the individual’s best interests.
In addition, there is significant work already under way on data strategy, which will have a direct impact on ICBs. The data strategy “Data Saves Lives: Reshaping health and social care with data” sets out commitments to transform the way that data is used across the health and care system, giving patients control of their health data and enabling staff to save more lives through improved care and treatment. It recognises that ICBs will help the NHS to join up data and delivery more seamlessly, working side by side with local government, third sector partners, and the wider health and care system to address long-term challenges, and sets out that each ICB will be expected to use digital and data to drive systems working, connect health and care providers, improve outcomes and put the citizen at the heart of their own care.
The data strategy was published in draft for engagement in June and a final version will be published by the end of the year. It sets out a range of commitments to ensure that health and care professionals have the data they need to provide the best possible care, that local and national decision makers are supported with data, and that data for adult social care are improved. It also includes commitments on every ICB having shared care records in place, and commitments in relation to data sharing between NHS organisations and supporting the underpinning infrastructure in order to ease data sharing.
New clause 57 seeks to commission, as the shadow Minister has said, a new cancer strategy and to designate a Minister or appoint a national lead with responsibility for enacting its implementation. The Government’s current cancer strategy is incorporated in the NHS long-term plan, published in 2019. That plan sets out ambitions that by 2028 the proportion of cancers diagnosed at stages 1 and 2 will rise from around 54% to 75% of cancer patients, and 55,000 more people each year will survive their cancer for at least five years after diagnosis. The shadow Minister is right to highlight the importance of the issue as something that touches everyone in some way, directly or indirectly. In the midst of the pandemic last year, I lost my uncle to cancer, and I suspect families all over the country are experiencing something similar among their family and friends. That is in the nature of the disease that we are talking about.
The NHS long-term plan contains a series of commitments to support the ambition. It focuses primarily on fast and early diagnosis, raising greater awareness of the symptoms of cancer, lowering the threshold for referral by GPs, accelerating access to diagnosis and treatment, and maximising the number of cancers that we can identify through screening. That ambition was intentionally set at a stretching level. Achieving it requires material progress in all of the long-term plan’s activities as well as successful innovation. The covid-19 pandemic has made the ambition even more challenging because of the additional pressure it has put on the NHS. It is still too early to assess the extent of the pandemic’s effect on that ambition in the long term. We remain absolutely committed to the need to prioritise earlier diagnosis to improve cancer outcomes. This ambition was strongly supported by the many cancer charities that worked with us to agree the priorities for the NHS cancer programme, and I pay tribute to them all.
I understand the intention behind the new clause. The covid-19 pandemic affected all NHS services in creating an environment unforeseen at the time by the long-term plan. In response to the pandemic, NHS England and NHS Improvement set up the cancer recovery taskforce, which provided advice and guidance on the national strategy for the recovery of cancer services. It monitored progress against the aims of restoring demand, reducing waiting times and ensuring sufficient capacity for cancer diagnosis and treatment. The taskforce published the cancer recovery plan in December last year, which fed into NHS operational and planning guidance outlining how the NHS would return to its pre-pandemic cancer performance within the long-term plan. It is thanks to the taskforce and forward planning that the CQC’s “State of Care 2020/21” report says that cancer services have achieved the best response and recovery, generally closing the gap in access on pre-pandemic levels more than any other area, although it notes that this still leaves a large backlog, which the recovery plan is focused on tackling.
The long-term plan commits NHS England and NHS Improvement to speed up the path from innovation to business as usual, spreading proven new techniques and technologies and reducing variations. I therefore consider the new clause, while it covers an important issue and quite rightly draws it to the attention of the Committee, not strictly necessary, because an ambitious cancer plan is already embedded in the long-term plan, with clear plans in place to support the recovery of cancer services from the pandemic specifically. We are fully committed to the actions within these plans and to seeing the long-term plan to its conclusion.
The Minister has not mentioned the workforce, specifically in radiology, which is very much the central specialty in diagnosing cancer. The data show that, once someone has been recognised as a cancer patient, they are still being treated relatively quickly—as he highlights, there is a shorter gap—but the problem is actually diagnosing someone, and the radiology workforce has a drastic shortage.
I am grateful to the hon. Lady, who is distinguished in this field herself, from her previous career. She quite rightly highlights the importance of the workforce. Since 2010, in both radiology and radiography, there have been significant percentage increases in the workforce of those specialist professions. However, she is right to highlight that, while we have seen a significant percentage increase, in absolute terms we still need to do more to grow those professions. We have plans in place to do that, but that is a slow task; it can, in some cases, take up to 10 or 12 years to become an experienced specialist in that field.
On those increases since 2010, the Government would argue that we put measures in place, but it is also important to recognise that the previous Labour Government were working on this as well, hence the pull-through; those radiologists and radiographers did not magically appear immediately after 2010. There were programmes in place before and after that, so it is right that we recognise the contribution of the Opposition when they were in Government.
Finally, the new clause also seeks to place a Minister or national leader in charge of that new cancer plan. My ministerial role includes responsibility for elective recovery and recovery from the pandemic—our plan to tackle those waiting lists. As the shadow Minister knows, my hon. Friend the Member for Bury St Edmunds (Jo Churchill), the former Under-Secretary of State for Health, who briefly sat on this Committee, had responsibility for cancer services specifically, as does the new Under-Secretary. Dame Cally Palmer is the national lead as the national cancer director at NHS England and NHS Improvement. She has a distinguished career as chief executive of the Royal Marsden Hospital in parallel. We are jointly responsible for the current cancer plan. It is therefore unnecessary to include that new duty when we already have those accountabilities.
I will move on briefly to new clause 64, which we are considering with new clause 57. It seeks to legislate for an additional duty on the Secretary of State to publish data on cancer waiting lists, cancer diagnoses and action being taken to reduce the number of patients waiting for cancer treatment in England. Again, I understand the intention behind the new clause. Cancer is one of the greatest challenges to people’s health, as we set out. I would like to highlight first the fact that the Government are already delivering on the request for monthly publication of cancer performance data. Ensuring transparency of data is a priority. Each month, we publish official statistics on waiting list data, including the number of patients who began cancer treatment and waited longer than 62 days for treatment. NHS England also publishes monthly management data on the number of people currently waiting longer than 62 days for diagnosis or treatment. The new clause calls for data that is very similar to what is already published, and we therefore consider that it would be duplicative.
Secondly, on the request to publish predictions—that is not something that is currently done. Doing so would likely result in unhelpful poor-quality assumptions or modelling that could lead to expectations or an understanding that is not reflected in the reality of the data that comes through. While we look at all data sources internally, it would not be in the best interests of scrutiny and, potentially, patients to publish poor-quality predictions with a limited confidence factor.
Thirdly, there is no evidence of need. Following the success of campaigns such as Help Us, Help You, we have seen the public seek medical attention for symptoms that might be cancer, while cancer referrals from GPs have been at record levels since March. At the same time, the NHS has been delivering high-quality and innovative solutions to improve cancer care and treatment. We have announced funding for elective recovery, including cancer services, of £2 billion this year and £8 billion over the next three years, which will increase activity and deliver millions more checks, scans, procedures and treatments. We will continue to publish and review the monthly official statistics to monitor progress.
Finally, on the request for the Secretary of State to publish a report every six months on the actions taken to reduce the number of patients awaiting cancer treatment, I should state that the NHS has already undertaken extensive work to reduce the number of patients waiting for treatment and to continue progress in delivering the long-term plan ambitions for cancer. We will publish the elective recovery delivery plan later this year, which will set out how the NHS will deliver increased elective capacity and how cancer patients will be prioritised for access.
Furthermore, the NHS cancer programme already regularly reports on progress through both NHSEI and DHSC governance structures, through publication of monthly data on cancer waiting times and through regular communications products. We would therefore argue that the new clause is duplicative. While I assure the Committee that we are taking urgent action to reduce cancer waiting lists, we consider the new clause to be unnecessary.