Integration White Paper
Liz Twist Excerpts(4 years, 6 months ago)
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Edward Argar
I am grateful to my hon. Friend, who quite rightly never misses an opportunity to pay tribute to his local hospital trust. As he knows, I am always happy—as is my hon. Friend the Minister for Care and Mental Health—to hear any ideas for innovation that may improve outcomes for patients and communities.
Liz Twist (Blaydon) (Lab)
As we have heard, councils and health service bodies have been taking the opportunity to work together in the absence of Government action. In Gateshead, we have a joint commissioning director for health and care, which has worked out very well. So things have been happening without the White Paper. The key to addressing integration is the workforce. With thousands of NHS vacancies and thousands of social care vacancies, we really need to address that issue. We need a comprehensive, detailed plan on restructuring the social care workforce to ensure it is recognised as much as the NHS workforce.
Edward Argar
I am grateful to the hon. Lady, although I am not entirely convinced on her point about the absence of Government action. Yes, co-operation has been happening organically from the ground up, but that has been encouraged and supported by Government action—including various pots of funding, for example relating to discharge during the pandemic—driving that activity and helping to foster that culture of co-operation. She highlights the importance of the workforce and the need for increasing numbers. That is a point I have already acknowledged. I have made clear that the Government have a plan and are already delivering increases in the workforce.
Children’s Mental Health
Liz Twist Excerpts(4 years, 6 months ago)
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Liz Twist (Blaydon) (Lab)
I am pleased to be able to speak in this hugely important debate.
The facts and figures speak for themselves: a 77% rise in the number of children needing specialist treatment in 2021; three quarters of children not being seen within four weeks of being referred to children’s mental health services, and there were half a million referrals in 2021 according to the Children’s Commissioner; and over a third of children with professional referrals being turned away from mental health services. There are also differences according to where people live and in which clinical commissioning group they are. This is not good enough for our children. We need to do more.
I echo my hon. Friend the Member for Batley and Spen (Kim Leadbeater), who said that, although we are looking at the impact of the pandemic, this problem predates the pandemic. Many of us have taken part in previous debates to ask for action and Government progress. Although the pandemic has certainly made things worse for children, this situation predates the pandemic, as the Minister knows. We need to make sure that there is early intervention for young people with mental health problems, with professional help, and we need to take local action as well.
I chair the all-party parliamentary group on suicide and self-harm prevention. The year before last, we did a report on self-harm in children, and some of the things we looked at were about having really local, low-level assistance that people could access for support. Organisations such as YoungMinds, the Mental Health Foundation and others have been talking about having drop-in hubs for mental health services, as indeed we are, but that intervention needs to start quite early as well.
I want to praise two schools in my constituency —Whickham School, a secondary academy, and Kingsmeadow Community School; I have visited both and talked to the young people there—for the efforts that they are making to tackle the mental health issues among the young people they teach. I commend them very much for their efforts. I would like to see, as we are proposing, very much more support in schools to tackle mental health problems.
On inequalities, we cannot but notice that not all of us are affected in the same way. If people suffer deprivation, poor housing and all those other inequalities, the chances are that they may be affected worse. It is really important that we recognise that when we are developing strategies to deal with it.
Research by the Mental Health Foundation has found that young people experienced especially high levels of loneliness during the pandemic, peaking at 69% in the final month of 2020. There are well-established links between loneliness and poor mental health, and we must take steps to address that through schools and throughout our communities. Most of all, we must make it a public health priority to tackle all these urgent mental health issues. We do not want people to develop mental ill health. We want people and our children to be well. I urge the Government to take action to redress the lack of support currently being provided.
Several hon. Members rose—
Cumberlege Report
Liz Twist Excerpts(4 years, 6 months ago)
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Liz Twist (Blaydon) (Lab)
It is a pleasure to serve under your chairmanship, Mr Rosindell. I congratulate the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) on securing this important debate, and I thank the Backbench Business Committee for making it possible. As the right hon. Gentleman said, over six months ago we debated this same issue in the main Chamber. We pushed the Government for responses on the recommendations of the Cumberlege report. Many Members spoke passionately at that debate.
Today I want to talk about sodium valproate and the impact it has had. I looked up my speech from last July in Hansard earlier, and my speech today is almost the same. Forgive me if I am repeating from Hansard, but I think it is worth restating these points while giving an update.
Sodium valproate has had an impact on so many people, including children and women who took the drug during pregnancy. I want to talk about my constituent Bethany Dodgson, a young woman affected by foetal valproate syndrome. She speaks up on this issue and does a brilliant job of making people aware of it. She is also a carer for her brother, who is more seriously affected by difficulties caused by foetal valproate syndrome, and does a brilliant job of that.
I want again to pay tribute to Janet Williams and Emma Murphy from In-FACT—the Independent Fetal Anti-Convulsant Trust—who have done so much to campaign on this issue, and to all those other women and other people who have campaigned. As I said last year, it is really scandalous that we still have children being affected by foetal valproate syndrome today because their mothers were not aware of the risk of taking sodium valproate during pregnancy. Emma and Janet have campaigned, as have other people; they have been through the records and talked to people. I am sure many of us here have talked to Janet and Emma as they have gone about their work. They have ensured that women are made aware of the risks if they are pregnant or considering pregnancy.
It is now 18 months on from the Cumberlege report, “First Do No Harm”, and what we have seen is one letter sent some months ago to warn women of the risk. There are still issues to be tackled, and Janet, Emma and others continue to work with GPs and others to ensure that there is awareness of the issue. There have been attempts in previous years, with greater or lesser success, to ensure that doctors were aware and warned their patients, but much more needs to be done actively to ensure that no more children are harmed.
I would like to talk, as others have, about the recommendations of Baroness Cumberlege’s report “First Do No Harm”. First, the Government have accepted the call for a patient safety commissioner; I know that it is in the process of being advertised and that an appointment will be made. That is significant and very helpful. There is some movement, as there was at the debate in July, but we still do not have a patient safety commissioner in place. I hope that will happen quickly. I urge the Minister and the Government to continue to act and to press for swifter action to ensure that a commissioner is in place and is effective in pursuing patient safety issues.
As I said in July, there must be a redress agency. That is one of the recommendations of the report. I am disappointed, as I know lots of the women are, that the Government have now said, “There will be no redress.” I said last July that going to the law for compensation or redress is no answer for people who have suffered from any of the syndromes we are talking about. They have already suffered enough, and going to law is further pain and torture. It is a trial on top of what they have experienced—and, in some cases, continue to experience, as do their children, daily. I ask the Government to think again about that.
I endorse what Baroness Cumberlege said in her report: there must be an independent redress agency, so that people are spared the pain of having to keep fighting in law for their rights. I hope the Government will think again, as the right hon. Member for Elmet and Rothwell said. I join him in calling for a redress scheme to be developed, even at this stage, to ensure that people do not continue to suffer and can cope with their conditions. These people have already had to live for years with the physical consequences for themselves or their family, without their views being heard. Please, Minister, think again, and take away from this debate the fact that there is cross-party support for a redress agency to compensate those people.
We heard about the patient reference group. When we spoke in June, it had been set up and was working. However, now that it has reported, there is no continuing involvement of patients in any successor group or body that would allow their voices to continue to be heard. I urge the Minister to look again at that, and to set up a patient reference group, or something with another name; the name does not matter. What matters is ensuring that the people going through this process are involved in what happens in the future. Please, Minister, look again at that. I am pleased that, since our last debate, the all-party parliamentary group first do no harm has been set up, and that Baroness Cumberlege continues to be involved and engaged on this issue, which is commendable. I know how hard she continues to work on this. However, that group was set up not by the Government, but by Members of this House and affected patients to ensure that their issues are not forgotten.
Finally, I will repeat what I said last year. Let us be clear: we are talking about a medical issue, but this is a women’s issue. It is an issue of women not being listened to and their concerns not being heard, and of action not being taken. Frankly—I will say it again—it is just not good enough. We need to ensure that their voice is heard. As we develop and consult on the women’s health strategy, which the Minister and I discussed in an Adjournment debate the other day, we need to make sure that we learn these lessons, and the lessons of so many other cases where the voices of women have not been heard and listened to effectively. The title of the Cumberlege report is, “First Do No Harm”. It is vital that this principle is looked at when we consider the women’s health strategy.
Maria Caulfield
I thank my right hon. Friend for making that point. Compensation can be claimed now. Our concern about setting up a specific body to oversee that is that that would not address the fundamental problem of why it is difficult to get compensation. However, it is a fundamental right of anyone who believes they suffered from clinical negligence to seek compensation, and we actively encourage that.
Liz Twist
This is really important. These people we have been talking about all afternoon are, as the right hon. Member for Hemel Hempstead (Sir Mike Penning) said, living with the consequences of those actions. Baroness Cumberlege is absolutely clear about setting up a redress agency to
“administer decisions using a non-adversarial process with determinations based on avoidable harm looking at systemic failings, rather than blaming individuals.”
Recommendation 4 is that:
“Separate schemes should be set up for each intervention…to meet the cost of providing additional care and support to those who have experienced avoidable harm and are eligible to claim.”
Going to the law is not an answer for these people. It is difficult, it causes anxiety and it is expensive. We need real action now to address the problem.
Maria Caulfield
I have addressed the points about redress, which is available. We are reforming the process of clinical negligence to make it easier for patients to get compensation without the need to go to court, and we are having some success in that. There is a very different system in place now compared with when many of these ladies were affected.
The patient safety commissioner was mentioned by some colleagues. The consultation proposed details for setting up the commissioner’s role. Baroness Cumberlege is on the recruitment panel for that position and will keep a close eye on the role of the commissioner. The advert and recruitment process is now up and running, and we expect to appoint someone very soon. I reassure colleagues that that appointment will be in place: the recruitment process has started, Baroness Cumberlege is on the panel to appoint the commissioner, and that commissioner will be independent—a point made by my right hon. Friend the Member for Maidenhead—of the Department of Health and Social Care, which will of course work closely with them. The commissioner will be able to scrutinise both the NHS and the Department itself.
On recommendation 5, about specialist mesh services, eight specialist centres are now operating in England, where women who have been affected by mesh implants can access treatment and mesh removal. A ninth is being set up in Bristol at the moment. I remain very open to colleagues’ experience of those mesh services. Women have the option to choose which centre they go to, but I recognise that that might involve great distances from where they live.
If women are not being referred to the centres, however, or if their experience of the centres is that their needs are not being met, I am keen to hear about that, because the whole point of setting the centres up was to ensure help for those women who have experienced mesh implants that have caused huge trauma—I take on board everyone’s points—to them, changing their lives and that of their families forever. If that is not working, the women’s health ambassador, the patient safety commissioner and I will look at that, because that was the whole point of setting up such services.
Maria Caulfield
Valproate should not be being used on women or girls able to have children, unless they have a pregnancy prevention programme in place. That is to ensure that patients are fully aware, if they need to take sodium valproate, of the effect on any potential pregnancy. The NHS also commissioned the paediatric neurosciences clinical reference group to support the development of pathways for care services, specifically to improve patient support and co-ordination on the pathway for sodium valproate.
Mechanisms are therefore being set up for those women and girls who need to take sodium valproate. I think my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) pointed out that, in other settings, a huge amount of work is done to ensure that those women do not get pregnant. Also, a multidisciplinary expert group with experience in responding to exposure has been established. It will report its recommendations to NHS England in March this year. We will follow up on those recommendations, but a piece of work is being done specifically on sodium valproate, which will help to prevent such problems in the future.
Recommendation 6 was on MHRA reform. The review highlighted the need for the regulatory agency to undergo substantial revision, in particular on adverse event reporting and patient engagement. As many Members said, instances were flagged many times by many different people—the women themselves, MPs in this place, charities and other bodies—but people did not listen, although the MHRA has a duty to do so.
The MHRA has now initiated a substantial programme of work to improve how it listens and responds to patients and the public, developing a much more responsive system for adverse event reporting and supporting timely and robust decisions involving patient safety. It has been consulting on a new regime for medical devices that makes patient safety, engagement and transparency more prominent.
To strengthen its commitment to patient engagement, the MHRA recently established an enhanced customer service centre to make it easier for patients to express concerns, whether about medicine or devices that are being used. The MHRA has also appointed a chief safety officer, Dr Alison Cave, who will lead its ongoing commitment to the recommendations.
On setting up a database to collect details of all implantations of devices, which is recommendation 7, we have already legislated for that through the Medicines and Medical Devices Act 2021. The Act created a power for the Secretary of State to regulate for the establishment of a UK-wide medical device information system. Alongside developing those regulations, more than £11 million has been set aside for the work, involving partners across the healthcare system to scope, test and cost options for that workstream.
On transparency for payments, which I think was raised by the hon. Member for Chesham and Amersham (Sarah Green), who spoke about the conflicts of interest between doctors and pharmaceutical companies or providers of surgical mesh, recommendation 8a highlights the need for greater transparency for payments made to doctors. The recommendation calls for a register of doctors’ interests and for recognised and accredited specialisms to be held by the General Medical Council.
As the Government set out in our response to the review, we agree that lists of doctors’ interests should be publicly available. We continue to hold the view that that information will be most accessible to patients if it is published by healthcare providers rather than by the GMC. We are taking that measure forward and it should be in place by July this year.
We are also working with professional healthcare regulators to be clear that all regulated health professionals—not just doctors—must declare their interests, and that that information must be published by their employers. That approach will give not just women but all patients the reassurance that there are no interests involved in clinical decisions made about their care. We are working with the Care Quality Commission and equivalent organisations, and with the devolved Administrations, to ensure that implementation is monitored and that there is local accountability.
Recommendation 8b touches on the mandatory reporting of the industry. It calls for the pharmaceutical and medical devices industries to establish payments made to teaching hospitals, research institutions and individual clinicians. On 24 January this year—just a few days ago—an amendment to the Health and Care Bill was tabled to give the Government the power to deliver on that important recommendation. That legislation will, I hope, come into law fairly soon. The amendment will enable the Secretary of State to make regulations requiring companies to report information about their payments to the healthcare sector. That measure will benefit patients, who will see payments made to their doctors or hospitals, and it will build on proactive initiatives by healthcare regulators and the industry.
I very much take on board Members’ feeling that it took too long to acknowledge the problems that those women have faced, whether because of mesh implants, sodium valproate or Primodos. Although this may not be of any reassurance for women who have already been affected, we now have measures in place to flag problems in the system. For maternity care and clinical negligence, for example, we have an early notification system so patterns of events around neonatal care and foetal abnormalities are picked up at an earlier stage, to get on top of the causes quickly. We are seeing improvements in maternal and neonatal outcomes as a result of that early warning notification system
We very much recognise that such problems did happen in the past, but measures are being put in place to make sure that they do not happen in the future. I certainly want to make sure that the women affected are getting the care and support that they need. I very much take on board the points raised by hon. Members. I am very happy to keep Members updated on progress. I meet Baroness Cumberlege regularly to address the issues raised in her report.
I reassure colleagues that many of these issues will feature in the women’s health strategy, which we will publish shortly. The women’s health ambassador, the patient safety commissioner and I will be working hand in glove to make sure that women’s voices are heard in relation to their healthcare, and that we end the pattern of women feeling that they are not being listened to, that they are palmed off, and that their concerns are not taken seriously.
NHS Hysteroscopy Treatment
Liz Twist Excerpts(4 years, 6 months ago)
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Ms Brown
I agree with the hon. Gentleman and I am grateful for his intervention. I know he has been in these debates with me, and he makes the same point: no woman should have to go through this. No woman should be held down while procedures happen because they are screaming with pain and they want the pain to stop.
Another woman who contacted me about a hysteroscopy that took place last year told me that she had never experienced so much pain—not from a hip operation, nor from having her spleen removed. As a result of her traumatic experience, she now has anxiety and has been prescribed tablets by her GP just to help her function with the day-to-day. Like Jane, she is losing sleep and no doubt her broader health has been harmed by this. She does not know whether she has cancer, but she told me that she is now too scared to go to the hospital for anything.
There are so many stories that I could have told today. I am sent so many of them, despite the fact that the issue does not get a huge amount of press. Women who experience this are seeking out me and the charity I work with to tell us about it. If there were more publicity, more women would come forward. I really hope that the Minister understands that this is an issue of patient safety, but also an issue of common decency. It is an issue of confidence in the medical professions and the NHS, and it will be costing us all, both in money and in lives, because problems simply are not being caught early enough.
Liz Twist (Blaydon) (Lab)
I have the privilege of co-chairing the all-party parliamentary group on women’s health. We held a meeting at the end of last year to talk about women and the health service, and I must admit that the meeting lit up when one of the medical people spoke about women’s experiences and, in particular, hysteroscopy. I could not believe what happened on my Twitter feed immediately afterwards. So many women were sharing their experiences, listening and saying, “We are entitled to have our experiences of pain validated, and to not have to go through that pain.” Does my hon. Friend agree that the women’s health strategy, which we will be talking about increasingly often, must involve accepting those experiences and seeking to listen more to women, validate their experiences and ensure that the right anaesthetic and treatments are provided?
Ms Brown
I entirely agree with my hon. Friend, and that will indeed be an ask I have of the Minister at the conclusion of my contribution. My hon. Friend is right: women are not listened to. When they tell a doctor, “This hurts. I am in pain and I can’t bear it,” their experiences are not considered valid. They are told that they are being hysterical or overreacting and that they need to be as strong as the other woman he saw last night, last week or whenever, and to not be such a baby in demanding that the procedure be stopped.
Another case from last year is that of Sandy. When Sandy was referred for a hysteroscopy, she was told that pain was a risk, but the information that followed about local pain relief gave her false reassurance. She assumed that it meant some kind of anaesthetic. When she met the clinician, he told her that it would be like period cramps. When she asked about pain relief, he just repeated, “No more than just period cramps, if there’s any pain at all.”
Sandy was well acquainted with period pains. She had had coils inserted and had given vaginal birth twice, one with no pain relief, so she knew she was tough and she thought she would be fine. But when the hysteroscope reached Sandy’s uterus, she felt
“the most incredible, searing, tearing pain I have ever experienced. I found the arms of the bed to grab onto and could hear myself shouting no no no stop stop stop.”
Madam Deputy Speaker, you will be glad to hear that on this occasion the clinician did actually stop, but I would say that by that point the damage had already been done. Sandy has no memory of any questions asked or what the clinicians said to her afterwards. She just remembers the pain, the shaking and the shock. She was completely and utterly dazed, but scant minutes after enduring this, Sandy was ushered out the door. She was given no time to rest and recover, and she was so confused because she had been made to feel that she had made a terrible fuss about nothing. Sandy then had to drive herself home. She told me that she has gone from being fearless and confident to being terrified of going back at all.
Finally, I want to mention Penny. She told me what happened after her “brutally painful failed hysteroscopy”. She strongly, and understandably, believes that she was misled about the risk of pain, because if she had known, there is no way she would have consented to having the procedure with just painkillers. Immediately after Penny went through the same agony that I have just described, she had an assessment with a nurse. The nurse told Penny how she had seen many women like her traumatised and in tears after hysteroscopies. The nurse said that she would never, ever go without a full anaesthetic herself, and that to do the procedure on women with no anaesthetic was barbaric. Penny was deeply and rightly angry to hear this, and the nurse was very clear that women were going through this without being fully informed of the risks.
Let us be really clear: the women I have spoken of today are the tip of a massive iceberg. That nurse is right, the GP I mentioned earlier in the debate is right, and there are many others within the NHS who recognise that this is simply unacceptable. So what needs to change? Frankly, there is still a massive problem with the attitude that many doctors take towards women patients. Our words and our wishes are ignored, and when our words are ignored, our rights are ignored. That has got to end, and I believe that that takes a culture of change. I do not accept that there are just a few badly trained, uncaring or even sadistic doctors. There is a broader problem that the Government and the NHS must address.
The Government have talked previously about a women’s health agenda, and before that there was the women’s health taskforce. Now, there is going to be a women’s health strategy. Believe me, the word “strategy” is music to my ears, but I want a guarantee from the Minister today that tackling painful hysteroscopy will be a core issue. That is my first ask. The patient groups that have been raising this issue so forcefully over many years must have a seat at the table in discussing and monitoring that strategy. These issues are common and the structure of the NHS is complex and obscure; it is failing to listen. So we need to find ways to ensure that patient outcomes for hysteroscopies are measured and monitored alongside the strategy.
My second ask is for all NHS trusts to offer patients who need a hysteroscopy a full range of anaesthetics and to inform them accurately about the risk factors for serious pain, so that all women can make an informed decision. That will require more anaesthetists and theatre capacity for hysteroscopy patients. My third ask is that the Government ensure that this investment is made, and that the commissioning decisions required are being made by NHS trusts. In my view, this is something that the women’s health strategy should be measuring and monitoring, alongside robust evidence on women’s experiences of NHS hysteroscopy, over the coming years.
How many hospital trusts are actually following the guidance to offer anaesthetics up front to all hysteroscopy patients? How many offer a range of effective anaesthetics and have trained staff to discuss women’s risk factors so that they are given an informed choice? How many women are forced to endure a traumatic failed hysteroscopy without pain relief, with public money wasted as a result, only to have another procedure under anaesthetic?
How many patients do not even know they are going to be asked to have a hysteroscopy until they attend an appointment, with all the pressure that that involves? Can Members imagine going to a doctor in a hospital because of a fear that they have cancer and that doctor telling them they are going to do a hysteroscopy right now? Can Members imagine how much pressure there is on a woman to accept that procedure there and then because of the fear of what might be there and how long they might have to wait? They do not want to upset the doctor, do they? They might have something really awful that needs to be attended to immediately.
Any women’s health strategy worth its name would make sure that the answers to the questions I have asked are known and that we are moving in the right direction on all those issues. I am delighted to say that the best practice tariff on hysteroscopy, which financially incentivised the mistreatment of women, is now gone. We had a system under which our hospitals were paid more for hysteroscopies done without anaesthetic than they were paid for those done with anaesthetic. I am thankful that that incentivised mistreatment of women has now gone. That is a massive achievement for the campaign.
Several previous Ministers have engaged with me on this issue—the hon. Member for Thurrock (Jackie Doyle-Price) was very good on it when we spoke—and I thank them for hearing me. One benefit is that trusts are now paid the same amount for out-patient and day-case hysteroscopies. That is far better than it was, but it can still cause problems, because day-case procedures with anaesthetic cost more. If a trust will not be compensated for the difference, it might still decide to try to limit access to pain relief, because it will know that if anaesthetic is given, it will not receive a benefit in kind to pay for that procedure. We need to know that individual trusts are actually changing their behaviour and attitude in response to the progress that has been made. If they are not, we might need further action to ensure that no trust will lose money by doing the right thing and providing the pain relief that a woman needs.
I am sure the Minister will be slightly alarmed by an increase in demand for anaesthetists and theatres, and we all understand the massive covid backlog that the Government and the NHS face. I reassure the Minister that both regional or spinal anaesthetic and intravenous sedation with anaesthesia may be good options for many hysteroscopy patients, depending on their needs and risk factors. The NHS has got to offer a real choice in the range of anaesthetics, not a false choice between a general anaesthetic and no effective pain relief at all. It is simply wrong that if a man needs a colonoscopy, the chances are that he will be offered an effective anaesthetic without question, whereas if a woman needs a hysteroscopy, they may be forced to endure such terrible trauma that it shakes them to the very core ,and then made to feel pathetic when they cry out in pain.
I am not going to stop raising this issue, and the courageous women I have been working with will not stop either. I want to work with the Minister on this issue, as I have with other Ministers in the past, and I hope the Government engage fully, because we need to end this scandal and ensure that women are treated like human beings in every single part of our NHS.
Covid-19 Update
Liz Twist Excerpts(4 years, 7 months ago)
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Sajid Javid
First, I hope that the Wray family will have many more holidays. No one wants this to be their last holiday as a family, but I am pleased that they can go ahead with their plans and that they will be able to access that proof for their children today. On the question of daily contact testing, I can confirm that people who are vaccinated—they have to be vaccinated—and isolating today will be able to move from isolation into daily contact testing from tomorrow, subject to the will of the House. On the opening hours, they will be increased, certainly for all the large vaccination centres. The minimum will be 12 hours, but many of them will be going way beyond that.
Liz Twist (Blaydon) (Lab)
The aim is to get high numbers given their booster through the booster programme by the end of the year. How will the Secretary of State ensure that inequalities are not generated by the push for numbers rather than need? I am thinking of those who may not be able to access the various systems digitally and those in areas of health inequalities.
Covid-19 Update
Liz Twist Excerpts(4 years, 8 months ago)
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Liz Twist (Blaydon) (Lab)
Thank you, Mr Speaker. The Secretary of State rightly emphasised the importance of vaccines, but the Government have fallen short of their target to offer all 12 to 15-year-olds the vaccine by October, so what will he do to ensure that programme is speeded up and rolled out?
Sajid Javid
We recently took measures to increase take-up among that age group by allowing those children, with their parents or guardians, to use the national booking system and the walk-in facilities, and that has certainly helped boost take-up.
Asthma Outcomes
Liz Twist Excerpts(4 years, 8 months ago)
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Liz Twist (Blaydon) (Lab)
It is a pleasure to serve under your chairmanship, Mr McCabe. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate. It is incredible that the subject of asthma has not been discussed more often in the House, given that it affects to so many people.
I would like to start with some key statistics on severe asthma: 5.4 million people in the UK currently receive treatment for asthma, including 5,282 people in my constituency of Blaydon, where we have a sad history of respiratory conditions, including asthma, affecting the lives of too many people.
Around 200,000 people in the UK have severe asthma, which is the most debilitating and life-threatening form of the condition, and which does not respond to conventional treatments. Four out of five people with suspected severe asthma, who should be referred to a specialist, are not getting the care that they need; 46,000 people are missing out on life-changing biologic treatments.
The north-east region has the highest oral steroid prescribing rate at 20%, prescribing two or more courses of oral corticosteroids in the previous 12 months compared with the 14% average. As we have heard, oral steroids can have very nasty side effects, including osteoporosis, weight gain and diabetes.
Severe asthma has a devastating impact on every part of someone’s life. Living with severe asthma is so much more than asthma attacks and occasional hospital admissions. People may feel isolated, lonely and scared, left without hope or the right support. The covid pandemic has clearly shown that for many people that is a very real concern, leaving many of them in isolation.
One person with severe asthma reflected on how it impacts on them:
“It’s really restricted me. I have suffered because there was a point when I refused to leave the house… So, it really affected my work, my lifestyle. Meet your friends, just even speaking to them, I would get really out of breath. I was trying to avoid all of that.”
Without specialist treatment and support, people with severe asthma end up in a never-ending cycle of emergency trips to hospital, relying on toxic oral steroids, which can have very nasty side effects. It has now been shown that as few as four courses of oral steroids over a lifetime can be associated with adverse effects. Another person with asthma, speaking to the British Lung Foundation and Asthma UK, said:
“Steroids made me able to breathe but they ruined my life. The insomnia, the racing thoughts, the weight gain. I have lost all confidence and self-esteem.”
Asthma UK’s recent survey of more than 2,000 people who used oral steroids in the last year revealed the devastating consequences on their quality of life, with 73% experiencing at least one side effect, and one third experiencing side effects relating to their mental health. Another person in the survey, a woman in her thirties, said:
“They affect my mental health really badly and the effects last for weeks or months after I finish the course. I dread taking them but do it to make my asthma better.”
That is not the kind of life that we want people to have.
However, there are some potential treatments. Life-changing biologic treatments offer hope, but only if people have access to them. Treatment in care for severe asthma has transformed over recent years. There are now five life-changing biologic treatments available that reduce, or even stop, the need for oral steroids. A person in another Asthma UK survey said:
“I just wish I had been put on this biologic a lot sooner. Because the period I was suffering, you can’t explain it in words. It was really, really hard for me. It was just so depressing that sometimes you think your life is just not worth living anymore.”
Access to those biologic treatments is poor. Asthma UK’s report, “Do No Harm: Safer and Better Treatment Options for People with Asthma” showed that an estimated 46,000 potentially eligible people are still missing out. Recent analysis by Logex showed that England is second from the bottom on biologic uptake in a comparison with similar European countries. Work is being done to improve the uptake of biologic therapies through the accelerated access collaborative, and Asthma UK has also developed a patient-facing tool, but much more needs to change to bring us in line with other European countries.
Nicki, from Oxford, has been able to access a biologic treatment early, in special circumstances, because she was not responding to other treatments for severe asthma. She says:
“My asthma was so bad that I spent my late twenties and early thirties being blue-lighted to hospital regularly with life-threatening asthma attacks, rigged up to machines to help me breathe and not knowing if I was going to see my 35th birthday. I couldn't walk anywhere due to breathlessness and had severe asthma attacks without warning. My plans for starting a family were put on hold because I was too ill and the only thing that offered any kind of relief was long-term steroid tablets, but these caused me to rapidly put on weight and I was still in and out of hospital continuously. My partner had begun to feel like my carer and I was losing my independence.
Since I have been on dupilumab, I feel like a new woman. I’ve taken part in cycling challenges, love walking my dogs, have a fantastic new job in health research and am able to finally contemplate starting a family.
It was a difficult process for me to get access to dupilumab but I know I’m one of the lucky ones—some people wait years for referrals and this can have a huge impact on their lives. It’s vital people get referred if they’re ever going to reap the benefits of this potentially life-changing treatment.”
That is a vivid illustration of the dramatic impact of new biologic treatments on those for whom they are suitable and available.
A lack of comprehensive guidelines can result in delays and missed opportunities for referral. Dedicated specialist services now offer a comprehensive systematic assessment, multidisciplinary team input and phenotyping. However, 82% of people who would benefit from seeing a specialist, according to British Thoracic Society guidelines, are not getting referred. Covid-19 will have compounded that; there was an 86% drop in referrals for respiratory disease during lockdown, and that has not fully recovered. People are unable to access these specialist services because there is a lack of awareness that severe asthma is a distinct condition that needs dedicated services and biologic therapies to treat it effectively. Furthermore, many health professionals do not know when to refer someone or understand the benefits that referral to a specialist could bring.
Other research from Asthma UK has shown that there is a variation in when clinicians think they should refer someone. This is because the current guidelines are confusing and conflicting, as we have heard. It is incomprehensible that a condition affecting over 200,000 people in the UK did not have a National Institute for Health and Care Excellence management guideline until the covid-19 pandemic, when rapid guidance was produced. That was a positive step, but a fully evidenced guideline with clear referral criteria is still urgently needed to address the huge unmet need and show the benefits of referring someone to specialist care. It is disappointing to see that severe asthma has been excluded from the upcoming NICE, British Thoracic Society and Scottish Intercollegiate Guidelines Network joint guideline draft scope on asthma. Including severe asthma, with clear referral criteria, within the NICE guidelines has the potential to transform care for people with asthma.
There are some clear policy recommendations regarding severe asthma. Repeated use of oral steroids must be seen as a failure of asthma management, and prompt urgent action and appropriate referral should be taken. Primary and secondary care clinicians need to be proactive in order to recognise and refer those with suspected severe asthma. NICE should develop a single, comprehensive severe asthma guideline on identifying, referring and treating people who may have difficult or severe asthma. We need to see the brilliant work by the accelerated access collaborative implemented, and the appropriate funding put in place, to allow severe asthma specialists to provide the right care and biologics to all who need them.
Before concluding, rather than concentrating only on severe asthma, I will touch on some broader issues about asthma. These are key points that need to be addressed. The SENTINEL study, which we heard about from the hon. Member for Strangford, is looking at the use of the blue short-acting beta agonist inhalers, and proper management for people with asthma that ensures they are properly reviewed. This is with the aim of reducing the use of SABA inhalers, and of using other anti-inflammatory inhalers properly to decrease the number of exacerbations. That has the potential to bring improvements for all asthma sufferers, not just those with severe asthma.
As we also heard from the hon. Member for Strangford, annual reviews are really important for all those with asthma. It is important that there are properly trained asthma nurses who can conduct those reviews, and that they feature in the new community diagnostic hubs that have been announced, so people can get access to these reviews. Not everyone gets access to reviews—too few people do at present.
We have talked about how the new asthma guidelines need to include severe asthma. Having that unified guideline would be very helpful. We need better access to biologic treatments for those who would benefit from them. Finally, I want to mention the impact of covid-19 and the recovery plan. I hope that the Minister will say something about what is being done to support people with asthma, and with severe asthma, and to make positive improvements in the wake of covid-19.
Edward Argar
As ever, the hon. Gentleman tempts me to be more ambitious. We have set 2023 as a realistic and achievable target. If it were possible to achieve it sooner, that would of course be a positive. Both in my Department and beyond, everyone will have been encouraged by the hon. Gentleman’s ambition and encouragement to go further and faster on that target, if they can. He makes his point well. I will make a little progress and then come back to several of the hon. Gentleman’s questions.
We recognise the particular effect of asthma on children and young people, which is why NHSEI’s children and young people’s transformation programme is promoting a systemic approach to asthma management. The first phase of the national bundle of care for children and young people with asthma has been developed with clinical and patient experts. A complete version of the bundle of care will be published in spring next year. The children and young people asthma dashboard, developed alongside the bundle, will be able to identify asthma care by race, geography, age and social deprivation, which goes to a number of points highlighted by the shadow Minister, among others. That will help ensure that children and young people with asthma who face the starkest health inequalities are prioritised.
The national care bundle has an environmental impact section that sets out three key standards around air pollution, which is an issue raised by Members on both sides of the House, including the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier), who is no longer in her place. We set out the Government’s clean air strategy in 2019, recognising the impact of air pollution on health and a range of other factors that affect people’s lives. In this space specifically, we recognise three key standards. First, all healthcare professionals working with children and young people with expected or diagnosed asthma should understand the sources and dangers of air pollution. Secondly, patients and their parents or carers should always receive information on how they can manage asthma with regards to air pollution. Thirdly, integrated care systems should ensure that they are linked with schools, where education around asthma should also be provided.
The NICE guidance, entitled “Air pollution: outdoor air quality and health”, provides advice for people with chronic respiratory or cardiovascular conditions on the impacts of air pollution. It is important that we recognise that there are ways that, in a health context, we can care for people who face those impacts. Going back to the 2019 clean air strategy, however, we as a society have a much broader obligation to tackle the root causes of those problems and to improve the quality of our air, particularly in our cities but across our whole country.
Given the pivotal role of respiratory medicine in treating patients with covid-19, some centres’ ability to commence patients on biologics may have been impacted at the peak of the surge. I think all Members will recognise that.
The pandemic obviously revolves around a respiratory illness. Those who treat respiratory illnesses, including asthma, have been on the frontline, along with all our health and care staff. I join the shadow Minister and others in paying tribute to the amazing work they have done. As we seek to recover elective services and get more routine services back to normal, we are ambitious but also recognise, in the face of uncertainties over winter and the new variant, that respiratory services can be some of the hardest to recover and bring back to normal operation, because those are the services affected by the disease and the nature of its transmission.
Liz Twist
Will the Minister be a little more specific about the opportunity for those with severe asthma to access biologic services? That is a very specific ask. Without wanting to minimise the impact of covid-19 and the size of the need for a recovery plan, that is a specific issue for a group of people.
Edward Argar
I always give way to the hon. Lady, occasionally with a little trepidation, because I know she will ask a measured and difficult question. That is a very important question. During the pandemic, specialist respiratory services for severe asthma have continued to run, but she asked a specific question about biologics, a subject raised by several colleagues. Prescription and access to biologics is co-ordinated through severe asthma centre multidisciplinary teams. They should ensure all treatments, conditions and options are considered when prescribing. I am perhaps less clear about that than she might want, because I would caveat that by saying it would be a clinical judgment.
We do recognise the value of biologics. That goes to what the hon. Member for Strangford said: all treatments and options should be considered by clinicians on an individual, case-by-case basis, rather than what may have happened in the past, which was a presumption in favour of inhalers as a way of managing the condition rather than treating it or getting to the root causes. Although not eliminating the condition, that could deliver the improvements that make a difference based on an individual’s condition.
Edward Argar
That is one of the easier things to do, given that this policy area belongs to the Minister for Care and Mental Health, my hon. Friend the Member for Chichester (Gillian Keegan), so I can commit to her writing to the hon. Lady. I am happy to do that, though I suspect that response will come back to the point about clinical judgment and decision making. I will also commit my hon. Friend to writing to the hon. Member for Strangford on the detailed and specific point he made about the annual review.
The use of remote consultations and biologic medication that can be taken at home mean we have been able to support most people with severe asthma during the pandemic. At the start of the pandemic, NICE published “COVID-19 rapid guideline: severe asthma”, which provided guidance on starting or continuing biological treatment. In writing that guidance, particular attention was paid to streamlining the process of moving patients on to biologic therapies, to compensate for any barriers that may have occurred because of changes to the NHS in response to covid-19.
The hon. Member for Strangford raised the subject of unified guidelines. NICE’s updated guidance is produced jointly with the British Thoracic Society and SIGN, so it will update all three key areas. They are working with other UK expert bodies to develop a joint guidance for the diagnosis, monitoring and management of chronic asthma, which will update and replace existing guidance.
Community diagnostic centres or CDCs—another theme raised by several hon. Members—which diagnose a number of conditions, are to be launched in place of asthma diagnostic hubs. Diagnostics for respiratory conditions are part of the proposed core services to be provided by CDCs. I hope that gives reassurance.
A review of diagnostics in the NHS long-term plan highlighted that patients with respiratory symptoms would benefit from that facility due to the number of diagnostic tests involved. At the spending review, we announced an extra £5.9 billion of capital support for elective recovery, diagnostics and technology over the next three years, with £2.3 billion of that to increase the volume of diagnostic activity and to roll out CDCs. The planned increase will allow the NHS to carry out 4.5 million additional scans by 2024-25, enhancing capacity, enabling earlier diagnosis and benefiting asthma patients.
I am conscious that I need to leave the hon. Member for Strangford at least three or four minutes for his winding-up speech. One point that has come up among hon. Members this morning has been about prescription charges: a challenging area. Currently, we have no plans to review or extend the NHS prescription charge medical exemption list to include asthma. I heard the points made by hon. Members, but a number of conditions are analogous to asthma, in terms not of their effects, but of their chronic or lifelong impact.
Equally, a balance has to be struck with proportionate charges and the contribution that makes to the NHS drugs budget to facilitate the provision of new treatment. Approximately 89% of prescriptions are dispensed free of charge already, and arrangements are in place to help those most in need. My hon. Friend the Member for Loughborough alluded to the fact that to support those who do not qualify for an exemption, the cost of prescriptions can be capped by purchasing a prescription pre-payment certificate, and that can be paid for by instalments. A holder of a 12-month certificate can get all the prescriptions they need for just over £2 a week.
When we started the debate, I wondered whether we would use the full hour and a half. It is testament to the hon. Member for Strangford, and the contributions of all hon. Members, that we have, and I should stop here to give him a few minutes to come back. To conclude, it is right for him to bring this debate to the House. I am grateful, as other hon. Members are, because asthma affects many of our constituents, day in, day out, and while we have made huge progress, it is right for him and other hon. Members to continue to press for even more ambition and even more progress. I pay tribute to him for that.
Adult Social Care
Liz Twist Excerpts(4 years, 8 months ago)
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Gillian Keegan
My right hon. Friend is absolutely right. People are in expensive hospital beds when they would rather be at home because of a lack of services, or a lack of joined-up service, and that affects hospitals throughout the country. It is a large element of the current pressures, and it happens every winter. It happened every winter when I was a hospital governor. This integration, and the Health and Care Bill which the Minister for Health, my hon. Friend the Member for Charnwood (Edward Argar), steered through the House so ably, will help to solve the problem.
Liz Twist (Blaydon) (Lab)
Our social care staff, whether they work in residential care homes or in people’s own homes, are at the heart of a real change in social care. The Minister has talked about some improvements, but does she accept that improving the pay and terms of employment of those staff is crucial to fixing the problem? What steps will she take to ensure that that is dealt with quickly?
Covid-19 Update
Liz Twist Excerpts(4 years, 8 months ago)
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Liz Twist (Blaydon) (Lab)
Shop workers and transport workers will bear the brunt of asking people to comply with these new restrictions. What measures do the Government propose to ensure those workers get the protection they deserve?
Sajid Javid
These new rules on face coverings will be enforceable by law, and the police and other law enforcement authorities will be able to issue penalty notices—I think the penalty starts at £200. That should be a last resort but, if necessary, it should be enforced.
Chronic Obstructive Pulmonary Disease
Liz Twist Excerpts(4 years, 8 months ago)
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Liz Twist (Blaydon) (Lab)
It is a pleasure to serve under you as chair, Ms Nokes. I congratulate my hon. Friend the Member for Weaver Vale (Mike Amesbury) on securing this debate on an important subject.
In my constituency of Blaydon, in the north-east of England, the figures for those diagnosed with COPD are sadly above the UK average. We know that 1.3 million across the UK have a diagnosis of COPD, but it is estimated that a similar number have undiagnosed COPD. In Blaydon, 2.9% of people have a COPD diagnosis, well above the England-wide figure of 1.9%. It is sadly in the top 10% of constituencies with the highest prevalence. The north-east is the region with the highest prevalence of COPD, at 3%. Remember, that figure is for diagnosed COPD. As I have said, it is estimated that double that number have COPD but do not have a diagnosis.
The British Lung Foundation has today—World COPD day—launched its report “Failing on the fundamentals”, based on the largest survey of those with COPD. It finds unacceptable levels of diagnosis and care for those with the condition. In the north-east, 78.1% of survey respondents reported that they had not received the five fundamentals of COPD care, as set out in NICE guidelines, and as referred to by my hon. Friend. That is 4 percentage points higher than the England-wide average of 74.1%.
Some 29.1% reported facing stigma and discrimination, which is similar to the England-wide average. A higher proportion in the north-east cited as barriers to diagnosis not wanting to know if they had COPD and not knowing the signs of potential COPD. In addition, 53% of respondents in the north-east who smoke said that they had been offered support to quit smoking in the past year, slightly lower than the 55.9% across England. As we know, stopping smoking is a key part of the treatment of COPD.
That matters because behind each of those statistics lies a real struggling person. In my constituency office, we see too many people hugely affected by COPD. As the condition develops, they face increasing disability and exacerbations or flare-ups of their condition, affecting their mobility and day-to-day life, evidenced by their need to claim disability benefits. It affects every part of their life, including their mental health. We need to get better at diagnosing and treating COPD, to stop its progression and reduce that impact on daily life. I want to speak in particular about diagnosis and what needs to be done, first, in the recovery from covid and then more generally.
As we have heard, the diagnosis of COPD is appallingly low, and the British Lung Foundation cite several reasons. More than 1.3 million people have a diagnosis of COPD and a similar number have the condition, as yet undiagnosed. The British Lung Foundation’s first annual COPD survey, which was just published, as I said earlier, shows that even before the pandemic, almost three quarters—70%—of people who have been diagnosed with COPD said that they faced barriers in getting a diagnosis. Recent Government figures demonstrate that diagnosis rates, which were already far too low, plummeted further during covid-19. In 2020, there was a 51% reduction in COPD diagnosis compared with 2019, which means that about 46,000 people in England alone missed out on a diagnosis. As we heard, that is a much higher drop than for comparable conditions.
The BLF says that diagnostic tests have still not properly resumed, so it is likely that as many as 92,000 people in England have gone undiagnosed in the past two years. While rates of cancer diagnosis are already up to, and in some areas better than, pre-pandemic levels—thank goodness for that, I hasten to add—there is no dedicated plan to address the huge backlog in respiratory care.
Spirometry is the main diagnostic test for COPD, but it was paused at the height of the pandemic because it was believed to be an aerosol-generating procedure. It has been now confirmed that that is not the case. Guidance has been published on how to conduct spirometry in a covid-safe manner, but it appears to have made little difference. By and large, spirometry testing has still not resumed in primary care, which is where most people with COPD are diagnosed.
Ruth Jones
My hon. Friend is making a powerful point. Spirometry is key, because COPD cannot be diagnosed by video link or telephone. Does she agree that it is crucial for people to be seen face to face to ensure that we fully diagnose them in future?
Liz Twist
I certainly agree. The British Lung Foundation says that there is a clear need for NHS England to intervene and work with local health services to prioritise the urgent restart of spirometry testing in primary care for the diagnosis of COPD and other respiratory conditions. The same would also be true in the other nations of the UK.
Two of the major barriers to restarting spirometry testing in primary care are a lack of capacity and, ironically, the creation of community diagnostic centres. If rolled out to the recommended scale, community diagnostic centres should help to improve diagnosis of COPD and other conditions, but people with COPD cannot afford to wait until CDCs are established for a formal diagnosis while their symptoms and wellbeing deteriorate. Unless spirometry and other diagnostic tests are restarted in general practice, the diagnostic backlog risks overwhelming CDCs as soon as they are established.
The Government and NHS England need to provide sufficient funding for enough capacity to conduct spirometry testing in primary care. Delays in diagnosis mean that too many people with COPD are seeing their condition worsen, which has the real impact on their day-to-day lives that I talked about, so the problem must be tackled urgently for the sake of my constituents with COPD, particularly those not yet diagnosed.
The Government need to properly fund our public health services. We have to make sure that stop smoking services can be easily accessed by those already diagnosed with COPD and those who may develop it, as the link between smoking and COPD is clear. The proposed updated tobacco control plan, which we are expecting, will play a key part in preventing COPD. It needs to look at the polluter pays principle, which calls on tobacco producers to pay for the damage that they cause, as recommended by the all-party parliamentary group on smoking and health.
Will the Minister agree today to implement the steps proposed by the British Lung Foundation and others to improve diagnosis of COPD as a matter of urgency? Will she commit to improve funding for public health services, in particular smoking cessation services? Will she ensure that the tobacco control plan addresses the issues raised by the APPG on smoking and health?
Gillian Keegan
Obviously, there would be a relationship between the GP and the smoker, but that can go either way. Anybody who is in those age groups needs to be made aware that they are entitled to this free lung health check, and it is the responsibility of us all to make sure those checks are available. I am sure we will all ensure that that is understood.
In 2019, 85% of deaths due to COPD were attributable to smoking, and in 2019-20, 84% of hospital admissions with COPD were attributable to smoking. The proportion and the number have remained quite similar over the past five years, and as has been mentioned by a number of hon. Members, smoking is a key factor in many cases of COPD. This Government are committed to reducing the harms caused by tobacco, and have made good long-term progress in reducing smoking rates, which are currently 13.9%, the lowest on record. However, with 6.1 million smokers in England, tobacco is still the single largest cause of preventable mortality, and a radical new approach is needed to address the stark health disparities associated with tobacco use. As such, we have set out the bold ambition for England to be smoke free by 2030. To support that ambition, we have announced the publication of a new tobacco control plan, which will include an even sharper focus on tackling health disparities and will support the Government’s levelling-up agenda.
The NHS long-term plan commits to delivering NHS-funded tobacco treatment services to all inpatients, pregnant women and people accessing long-term mental health and learning disability services by 2024. COPD is responsible for around 33% of annual deaths from respiratory diseases and is the single largest cause of occupational lung disease. There are an estimated 17,000 annual new cases of self-reported, work-related breathing or lung problems, which is why our colleagues in the Department for Work and Pensions are also helping to tackle the causes of COPD in the workplace.
Liz Twist
I thank the Minister for recognising that a proportion of COPD cases are caused by work-related issues, which will of course affect the north and the north-east most of all because of their industrial heritage. I assume she will tell us what steps the Department will be taking to pursue that.