Endometriosis: Women in the Workplace
Bell Ribeiro-Addy Excerpts(2 weeks, 3 days ago)
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Gill Furniss
I thank the right hon. Member for that intervention, and I absolutely agree. I pay tribute to you, Madam Deputy Speaker, and to the right hon. Member for the efforts he has put in over many years.
Stigma and a lack of awareness by employers means that reproductive health conditions can have a significant effect on women’s experiences at work. It is almost impossible to remain at work when suffering from chronic pain and the mental toll that these conditions cause.
Bell Ribeiro-Addy (Clapham and Brixton Hill) (Lab)
I thank my hon. Friend for the fantastic speech she is making. Endometriosis UK, which provides the secretariat of the all-party parliamentary group on endometriosis, of which I am the chair, released a report last year that found that 47% of women had visited their GP 10 or more times with symptoms prior to diagnosis. Many of those women are likely to face issues with getting time off work to attend these appointments, or experience some form of disciplinary action because of it. Does my hon. Friend agree that being understanding and tolerant about the number of appointments needed to secure a diagnosis is critical to being an endometriosis-friendly employer, and that, ultimately, we need to take steps to ensure that the process does not take several years and so many appointments?
Gill Furniss
I thank my hon. Friend. The average length of time taken is now eight years, which is not good.
Many women feel unable to speak openly about endometriosis as they would other conditions, as if it were something to be ashamed of. Research shows that 23% of women take time off work because of period health issues while 80% lie about reasons for absence if they are related to periods. Having said that, endometriosis is not just about periods; it is a whole-body complaint. I do not think there is an organ in the body up to the chest that has not been found to be affected by what is a crippling disease.
World AIDS Day
Bell Ribeiro-Addy Excerpts(2 months ago)
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Bell Ribeiro-Addy (Clapham and Brixton Hill) (Lab)
I thank my hon. Friend the Member for Uxbridge and South Ruislip (Danny Beales) for bringing forward this crucial debate. I will start by commending campaigners and activists who have worked tirelessly to ensure that we have international awareness of HIV and AIDS.
The legacy of racism surrounding the AIDS pandemic casts a long and enduring shadow for communities such as mine in Lambeth, and indeed across Africa and the Caribbean. Although the impact of the virus and our understanding of it has evolved, the legacy of racist attitudes towards AIDS continues to have consequences for black communities in the healthcare system. HIV-related racism and stigma increases vulnerability to infection in black communities, and those who are HIV-positive are less likely to come forward to be tested or to access treatment and health services.
Last year, more than one in three HIV diagnoses in Lambeth was classified as late, meaning that the immune system had already suffered damage. Across England, 44% of diagnoses are late and women are 51% more likely to receive such delayed diagnoses. Early detection saves lives, offering effective treatment that ensures that those living with HIV can lead long and healthy lives and not pass on the virus once it is suppressed.
People who are not infected are still at high risk because HIV stigma can prevent them from accessing information and education. Cultural taboos linked to sex and sexually transmitted diseases in black communities can also have an impact on people’s access to HIV prevention and education, which directly increases the vulnerability of those who are not infected.
Racist assumptions around HIV and AIDS have also had consequences in other areas of the healthcare system. As recently as 2021, the NHS had a discriminatory blood donation ban on black donors due to flawed science around HIV. The ban had a direct impact on sufferers of sickle cell, an illness that predominantly affects black communities. Treatment is dependent on blood transfusions, particularly for a rare blood group such as Ro, which is common in black people.
The legacy of those rules has resulted in a reluctance among the black community to come forward and donate blood. That is why I commend the work done by organisations such as the Terrence Higgins Trust, which makes a concerted effort to combat outdated and discriminatory policies and all the damage that they cause. I could not allow this opportunity to pass without mentioning the new Brixton blood donation centre in my constituency, which is opening in a few weeks. I extend an invitation to the Minister, and all Members, to come and visit the new clinic and to open their veins and donate. It is so important that we challenge the misgivings around blood donation and encourage people to donate.
Ending new HIV cases is not just a medical issue; it is a social justice issue. We have to challenge the racism and discrimination that prevents individuals from accessing care, education and support.
Oral Answers to Questions
Bell Ribeiro-Addy Excerpts(6 months, 1 week ago)
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Wes Streeting
I welcome the hon. Lady back to her place. We worked constructively on the Opposition Benches together and, regardless of the size of the Government’s majority, we intend to work constructively with her on this side of the election, too. By extension, I congratulate her colleagues on their election. I have discovered that I have 72 new pen pals, all sitting there on the Liberal Democrat Benches, and they have been writing to me about a whole manner of projects. My colleagues and I will get back to them.
The hon. Lady is right that this is not just about the new hospitals programme, important though that is; the condition of the whole NHS estate is poor. In fact, backlog maintenance, the direct cost of bringing the estate into compliance with mandatory fire safety requirements and statutory safety legislation, currently stands at £11.6 billion. That is the legacy of the last Conservative Government.
Bell Ribeiro-Addy (Clapham and Brixton Hill) (Lab)
The Minister for Secondary Care (Karin Smyth)
I congratulate my hon. Friend on her re-election and thank her for raising this important issue. It is not right that three out of four parents are not able to stay with their critically ill baby overnight at such an important point in that new relationship. NHS England recently concluded a review of neonatal estates. It is in the early stages of analysing the findings, which will be used to inform the next steps. We are all determined to support parents to be involved in every aspect of their baby’s care.
Bell Ribeiro-Addy
I congratulate my right hon. and hon. Friends on their re-elections and on taking their places. Recent research from the charity Bliss showed that when a baby receives neonatal care, their parents are routinely expected to leave them in hospital overnight for weeks or even months at a time. Its research found that for every 10 babies who need to stay overnight in neonatal care, there is only one room available for a parent to stay with them. How will the Minister ensure that the existing guidance about facilities for families is followed, and how will she ensure that trusts can access the resources they need to stop the separation of babies and their parents?
Karin Smyth
My hon. Friend is absolutely right that the separation of babies and their parents at that time is not acceptable, and about the shocking state of the estate, as we have just heard. We will look at the findings of the NHS review very quickly, and I will be happy to get back to her on those specific points.
Oral Answers to Questions
Bell Ribeiro-Addy Excerpts(9 months, 1 week ago)
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Andrew Stephenson
Thanks in part to the sterling work of my hon. Friend, monthly average patient recruitment to commercial clinical trials is almost five times the figure it was back in June 2023. That is hugely positive, but there is clearly more to do in this space.
Bell Ribeiro-Addy (Streatham) (Lab)
For over a decade, the Camberwell dialysis unit has provided high-quality NHS care to patients in south London, so my constituents were shocked to hear that these services are to be outsourced to Diaverum, a multinational for-profit health corporation, which has already had one of its clinics rated inadequate and put into special measures. Does the Minister accept that privatising the NHS bit by bit has disastrous implications for care, and will he listen to patients in my constituency and commit to maintaining our NHS dialysis provision?
Andrew Stephenson
That sums up the usual contradiction on privatisation between Labour Front Benchers and Back Benchers. Any service changes should be based on clear evidence that they will deliver better patient outcomes. In Lambeth, patients who receive dialysis at the new site in Brixton will receive care in a significantly improved environment with brand new facilities, in a great example of an innovative public-private partnership. NHS England has established the renal services transformation programme to reduce unwarranted variation in the quality of access to renal care.
Hospice Funding
Bell Ribeiro-Addy Excerpts(9 months, 1 week ago)
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Sally-Ann Hart
I agree. It is important to point out that most hospices do not want 100% funding from the Government because they need the flexibility to do what they want. Fundraising is a really important part of the local community effort, bringing people together, but when the dependence on fundraising is so vast we might need to intervene to provide extra funding.
End of life care is an essential service that so many of us will need, but the situation is made worse by inflationary pressures and rising demand. We have an excellent ICB in Sussex—NHS Sussex, led by Adam Doyle—which has highlighted that hospices are recognised as having become increasingly fragile in recent years, due to a lack of resilience in their funding model, which is heavily reliant on gifted income alongside NHS grants.
Bell Ribeiro-Addy (Streatham) (Lab)
Royal Trinity Hospice in my constituency supports people across central and south-west London to live and die well. Next year it will cost it £19 million to deliver care for its around 2,500 patients and support for their nearly 1,000 loved ones—a 20% on-year increase. Meanwhile, the NHS funding that it receives will decrease in real terms to 24% of the costs of running its services. Does the hon. Member agree that the Government should commit to maintaining the funding levels that hospices such as Royal Trinity require to ensure that people receive the quality of end of life care and the dignified death that they deserve?
Sally-Ann Hart
This is the point of the debate: to work out what sort of funding models we need. ICBs also need to be given the freedom to assess the priorities in their local areas, but I take that on board.
We have eight hospices across Sussex, and in 2019 seven of them formed the Sussex hospice collaborative—partnership working to ensure that the hospices’ combined resources can be used to maximise the impact, reach and cost-effectiveness of their activities. NHS Sussex works closely with that collaborative arrangement, which has supported the ability to have collective conversations. In January, the APPG on hospice and end of life care published a report on Government funding for hospices. The inquiry found that despite the introduction of a legal requirement for integrated care boards to commission palliative and end of life care, ICB commissioning of hospice services is currently not fit for purpose, and the value that hospices provide to individuals in the wider health system is at risk.
Hospice funding has historically not risen in line with inflation, which has been brought starkly to light during the periods of high inflation in recent years. Costs to keep palliative services running have increased rapidly over the past few years, but that is not reflected in the Government funding that hospices receive to deliver the services, which has increased by only 1% each year on average.
NHS Workforce
Bell Ribeiro-Addy Excerpts(2 years, 1 month ago)
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Bell Ribeiro-Addy (Streatham) (Lab)
The importance of this debate should not be understated because the NHS is in a dire state, and that is largely the result of a severe staffing crisis. Other than the generally inept economic policies we have seen from the Government, there is no denying that the Brexit deal has had a direct impact on staffing numbers, and that chronically low pay and poor working conditions have resulted in an exodus of staff leaving the NHS to work in the private sector, work abroad or leave the healthcare profession entirely.
I would like to start with one of the most undervalued groups in our NHS, which is the first that most of us meet in modern Britain—the midwife. The Royal College of Midwives has estimated that it has an existing and long-standing shortage of more than 2,000 midwives, and that for every 30 who are trained, NHS England loses 29. Vacancies for nurse positions are estimated to be at an all-time high, with a survey at the start of the year finding that 57% of nursing staff across healthcare settings are thinking about quitting or actively planning to quit their jobs.
With figures such as these, we cannot blame existing staff for wanting to leave or blame others for not wanting to fill these vacancies, particularly when we see the TUC’s estimates that, since the Conservatives took office in 2010, midwives have had a total real-terms pay cut of £5,657, nurses’ pay is down by £4,310 in real terms and the pay of all doctors is down by about 7.4%. We cannot forget the thousands of non-medical staff, who are often overlooked, but are integral to keeping the NHS running. Cleaners, security guards, porters and other important workers have, along with other NHS staff, faced real-terms cuts in pay since 2010.
Is it any wonder that the NHS waiting list has now tipped to over 7 million? When we hear of the scale of the vacancies, can we really be surprised that some A&E patients are left waiting for over 12 hours, or that ambulances are repeatedly failing to meet their target response times? The staffing crisis in the NHS is having a dire impact on patient safety, and if we are going to tackle the NHS backlog, address the crisis in staff recruitment and retention, and bring the NHS back to the standard it should be, we first and foremost have to address pay. We cannot be gaslighting nurses by saying that they should drop their pay demands to send a message to Putin, which is absolutely ridiculous.
We have to pay nurses what they are worth, and if the Government were not aware of what they are worth, the pandemic should have shown them. We called them key workers because we could not do without them, yet the Government justify their pay by calling them low-skilled workers. There is no such thing as low-skilled work; there is only low-paid work. All work is skilled when it is done well, and our NHS staff are the best example of this. On the contrary, Ministers, who are paid multiple times more but who have shown little skill in running the country, if the cost of living crisis and the economic situation are anything to go by, are completely different. They get paid so much more, but we cannot see their sense of skill in running this country.
In the past year, a number of NHS personnel have been taking strike action against low pay, and nurses will be striking later this month for the first time in the Royal College of Nursing’s 106-year history, while ambulance staff have announced their strike today. If that does not show us the scale of the crisis facing workers in the NHS, I do not know what does. No one wants to have to take strike action, least of all the workers in our NHS, but the dire situation of chronic underpayment and poor conditions is leaving them no choice. This Government have left them no choice. When we have 27% of NHS trusts operating food banks for their staff, when one in three nurses is taking out a loan to feed their family and when NHS staff across the board are severely underpaid, of course they are at the point of saying that enough is enough.
No one goes to work for the NHS for the money, but it cannot be fair to expect people to live on poverty wages. If the Government want to address this crisis in recruitment and retention, they must get over this ideological aversion to paying public sector workers what they are worth. That means committing to a proper cost of living pay rise, and setting out plans to reverse a decade of real-term cuts in pay for our NHS workers.
Baby Loss and Safe Staffing in Maternity Care
Bell Ribeiro-Addy Excerpts(2 years, 3 months ago)
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Bell Ribeiro-Addy (Streatham) (Lab)
It is a pleasure to serve under your chairmanship, Mr Davies. I congratulate the hon. Member for Hartlepool (Jill Mortimer) on securing this important debate.
The loss of a baby at any stage of pregnancy or after birth can be an incredibly painful experience for any parent. I pay tribute to everyone who has and will share their experience of baby loss in this Chamber. It takes a lot to relive that trauma, but I have heard that it means so much to everyone listening when we speak about such issues in this House. Sadly, when baby loss happens, people are often told, “It is one of those things” or “It just happens”. I remember being told in my grief that I was not the first woman that this happened to and that it was one of those things. It is heartbreaking that women continue to be gaslit in this way when we know that negative pregnancy and birthing experiences can drastically or even fatally change outcomes. We have to accept that it is not always “one of those things” and work to come up with solutions to end it.
I want to touch on two things. The first is a report conducted by Five X More—the black maternal health awareness campaign. It conducted the largest nationwide study of black women’s experiences of maternity services in the UK, and the results make for some shocking reading. The report will be presented to Parliament next Tuesday, and will be followed by a lobbying event by the campaign—where it will reiterate the call on the Government to set a target to address disparities and close the gap in mortality rates—to which all hon. Members have been invited. I put that request to set a target to the Minister again today.
The report encompasses the views of more than 1,300 black and black mixed-heritage women and their maternity experiences, including a number of black women who have experienced baby loss. As some will know, black women are four times more likely to die during pregnancy, labour or post partum; Asian women are twice as likely; and women of mixed heritage three times more likely. Black women are 40% more likely to experience a miscarriage, and black babies have a 50% increased risk of neonatal death and a 121% increased risk of stillbirth.
The Five X More report highlights all the negative interactions that women experience with healthcare professionals: feeling discriminated against in their care; receiving a poor standard of care, putting their safety at risk; and being denied pain relief. After experiencing negative maternity outcomes, 61% of the women surveyed reported that they were not even offered additional support to deal with the outcome of their pregnancy—something that, as we have heard today, is widespread. It is vital that we acknowledge these racial biases when we discuss maternity care.
To make maternity care safe for all patients, it is vital that the level of staffing and the treatment of staff is looked at. For every 30 midwives trained in this country, 29 are lost—what an indictment of the state of maternity services in this country. That is one of the reasons I am proud to support March with Midwives and the awareness it is trying to raise of the dire conditions midwives are facing. Midwives are overstretched, under strain and working in situations they know are unsafe, but pushing ahead anyway at a risk to their physical and mental health. They do not do it for the big bucks, but the least we can do is pay them decently—something that we know we are not doing.
All we ask from the Minister today is to address the pay conditions and shortages that midwives are facing. Everybody in this room owes their life or the life of one of their loved ones to a midwife. They deserve better, as do the women and babies they aim to care for.
The Parliamentary Under-Secretary of State for Health and Social Care (Dr Caroline Johnson)
First, I thank all the Members who have taken the time to attend the debate and those who have spoken so openly about their own, and their constituents’, experiences and concerns. I particularly thank my hon. Friend the Member for Hartlepool (Jill Mortimer) for securing the debate and enabling us to have this important conversation.
Let me take this opportunity to recognise the work of everyone who has been involved in Baby Loss Awareness Week. It is important that we make it easier to speak about pregnancy loss and enable people to have open conversations about their experiences, which in turn can help those who have experienced the tragic loss of a baby. I also take this opportunity to commend the work of the charities that provide excellent support to families experiencing baby loss, including all the members of the Baby Loss Awareness Alliance and the Lily Mae Foundation, which was mentioned by my hon. Friend the Member for Meriden (Saqib Bhatti).
As we take time to reflect, I want to acknowledge how difficult the loss of a baby is. Everyone’s grief will be different. It is a personal, individual process, which people will try to navigate in many different ways. Although it can be challenging to reflect on such tragic losses, this week provides an opportunity for people to remember, reflect, share and seek support and comfort from other people.
This is the seventh year in a row that a debate has been held to mark Baby Loss Awareness Week. I am honoured to take part as the new Parliamentary Under-Secretary of State at the Department of Health and Social Care and to work with everyone to continue making a difference in an area as vital as maternity and neonatal safety.
The independent review into maternity and neonatal services at East Kent Hospitals University NHS Foundation Trust, as mentioned by my right hon. Friend the Member for North Thanet (Sir Roger Gale), was published last Wednesday. I take this opportunity to extend my condolences to the families who suffered due to the care they received and express my gratitude to the individuals who were instrumental in establishing the review and to the inquiry team for carrying out the review to such a high standard. The Government and I take the findings and recommendations of that report extremely seriously, and I am committed to preventing families from experiencing the same pain in the future.
Our maternity safety ambition, as mentioned by my hon. Friend the Member for Hartlepool, is to achieve half the 2010 rates of stillbirths, neonatal and maternal deaths, and brain injuries in babies occurring soon after birth. Since 2010, the rate of stillbirths has reduced by 19.3%, the rate of neonatal mortality for babies born over 24 weeks gestational age has reduced by 36% and maternal mortality has reduced by 17%. However, it is important to note that there was an increase in the rate of stillbirths between 2020 and 2021. This increase occurred at the same time as the covid pandemic, and detailed work is going on to establish why that was the case. I reassure hon. Members that we remain committed to our maternity safety ambition.
Every woman giving birth has the right to a safe birth, and the Government and NHS England are committed to providing women with personalised and individual maternity care. The role of NHS staff in maternity services is critical to safe care for families, and I recognise all the great, hard work by teams across the country and thank them for it.
Members on both sides of the Chamber have talked about funding and workforce. NHS England has invested £127 million in bolstering the maternity workforce even further and in programmes to strengthen leadership and retention and provide capital for neonatal maternity care. We will keep that funding under review. That investment is on top of the £95 million investment made last year in the establishment of 1,200 more midwifery posts and 100 more consultant obstetrician posts. There are increasing numbers of midwifery and obs and gynae trainees.
I am grateful to the APPGs on maternity and on baby loss for producing their report into the maternity workforce, and I acknowledge the important themes in it. The hon. Member for Enfield North (Feryal Clark) raised the issue of retention. NHS England has established a nursing and midwifery retention programme, supporting organisations to assess themselves against a bundle of interventions aligned to the NHS people promise and it will use the outcomes to develop high-quality local retention improvement plans. In addition, in 2022-23 we made £50,000 available for each maternity unit in England to enhance retention and pastoral support activities.
Dr Johnson
I will not, because I have a lot of questions to get through in a really short time.
Many hon. Members talked about bereavement. In the difficult scenario of baby loss, we understand that bereavement care for women and families is critical. We continue to engage closely with the bereavement sector to assess what is needed to ensure that bereaved families and individuals receive the support that they need. This year we have provided £2.26 million of national funding to support trusts, expand the number of staff trained in bereavement care and directly support trusts to increase the number of days of specialist bereavement provision that families can access.
In the women’s health strategy, which hon. Members mentioned, published earlier this year, we discussed the introduction of pregnancy loss certificates for England. This will allow a non-statutory, voluntary scheme to enable parents who have experienced a pre-24 weeks pregnancy loss to record and receive a certificate to provide recognition of their baby’s potential life. The certificate will not be a legal document, but it will be an important acknowledgement of a life lost, and we hope that it will provide comfort and support by validating a loss.
We understand the impact of pregnancy and childbirth on mental health, especially for those affected by the loss of a baby, and we are committed to expanding and transforming our mental health services so that people can receive the support that they need when they need it.
As part of the NHS long-term plan, we are looking to improve the access to and quality of perinatal mental health care for mothers and their partners. Mental health services around England are being expanded to include new mental health hubs for new, expectant, or bereaved mothers. These will offer physical health checks and psychological therapy in one building.
Oral Answers to Questions
Bell Ribeiro-Addy Excerpts(2 years, 9 months ago)
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Sajid Javid
I share my hon. Friend’s concerns, which is why the NHS commissioned this review from one of our top paediatricians. It is already clear to me from her interim findings and the other evidence I have seen that NHS services in this area are too narrow; they are overly affirmative and in fact are bordering on ideological. That is why in this emerging area, of course we need to be absolutely sensitive, but we also need to make sure that holistic care is provided, that there is not a one-way street and that all medical interventions are based on the best clinical evidence.
Bell Ribeiro-Addy (Streatham) (Lab)
The Minister for Care and Mental Health (Gillian Keegan)
The hon. Lady raises a very important question. We want a society in which every person with dementia and their families and carers receive high-quality, compassionate care from diagnosis through to end of life. We have provided £17 million this financial year to NHS England and NHS Improvement to increase the number of diagnoses. That funding was spent in a range of ways, including investing in the workforce to increase capacity in memory assessment services.
Children’s Mental Health
Bell Ribeiro-Addy Excerpts(2 years, 11 months ago)
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Bell Ribeiro-Addy (Streatham) (Lab)
This morning I visited a school in my constituency, Harris Academy Clapham, and I had the opportunity to speak to young people about their mental health challenges during lockdown, to meet Mabel, the cockerdoodle support dog, and to find out more about what they are doing during their wellbeing week. It is one of the few schools fortunate enough to provide an onsite counselling service, and not just to children, but to parents and teachers where needed. That is through the organisation Place2Be, the founders of Children’s Mental Health Week. But even in schools such as that, that is simply not enough to meet the demand: the schools that are able to offer that take it upon themselves, stretching already slashed pupil premiums or sometimes funding from their local authorities, whose funding has also been severely cut. There is no dedicated funding from the Government specifically to provide that service at this time.
The reality is that we do not have the capacity to treat the rising levels of mental health issues, because this Government simply will not invest in it. Between 2010 and 2015, spending on children’s mental health services fell by nearly £50 million. That is more than 6% in real terms. The early intervention grant, which was originally set at £2.79 billion for 2010-11, has since been cut by almost £1 billion.
Listening to the Minister speak earlier, I was reminded of something that my hon. Friend the Member for Luton South (Rachel Hopkins) was saying. If someone has £10 and I take that away from them and give them £1 back, I do not expect them to be grateful, but that is exactly what the Government seem to do every single day. Cuts, with austerity, real-terms cuts, and privatisation that ends up costing more and delivering less all mixed in for extra measure—that is the complete sum of this Government’s economic policy.
In the sixth largest economy in the world, every crisis in public services, including this mental health crisis, is a political choice. We are seeing nearly 1,500 children a week presenting with mental health problems, while specialist services turn away one in four children referred to them. Around 75% of young people experiencing a mental health problem are forced to wait so long that their condition worsens, or they do not receive any treatment at all.
All Members will no doubt agree that our mental health services are as important as our physical health services, so why do we not treat them that way? While various announcements sound good on paper, they are all completely tokenistic if they are not combined with systematic support. There has to be long-term investment in mental health and education and the focus cannot be solely on training teachers, who are there to teach. We need specialist services.
For every £1 spent on intervening early, there is a cost saving to individuals and society of £6.20. At the moment, there is so much pressure on all our services, and preventive support is obviously the most cost-effective way of targeting funding. It is vital if we are to tackle the spiralling mental health crisis across the country.
Sickle Cell Treatment
Bell Ribeiro-Addy Excerpts(3 years, 1 month ago)
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Bell Ribeiro-Addy (Streatham) (Lab)
It is a pleasure to serve under your chairship, Mrs Miller. I congratulate my right hon. Friend the Member for Wolverhampton South East (Mr McFadden) on securing this debate and on his sterling work as the chair of the sickle cell and thalassaemia all-party parliamentary group. I also commend my neighbour, my hon. Friend the Member for Vauxhall (Florence Eshalomi). She always speaks with such affection about her mother, and I hope that she knows that her mum would be so incredibly proud of her if she were alive today.
The APPG’s landmark report, which was triggered by the tragic and avoidable death of Evan Nathan Smith in North Middlesex hospital, reveals the terrible truth of sickle cell treatment: the substandard care, the stigmatisation and the lack of prioritisation of this condition. As an officer of the group, I was pleased not only that the report came out, but to be able to give evidence as somebody who cared for someone with sickle cell—as someone who lost a loved one, my friend Adjuah, to negligent care. I sat with her through many hospital admissions, and I witnessed mistakes and mistreatment. She said to me on more than one occasion, “One day this hospital is going to kill me,” and one day it actually did. I hope that the Minister has read the report, has taken into account its many recommendations and will outline what steps the Government will take to improve the treatment of sickle cell and the overall experience of sickle cell patients in our national health service.
I also hope that the Minister will touch on what steps the Government will take specifically to improve the treatment of black sickle cell patients. Unfortunately, for those of African and Caribbean heritage, the experience of sickle cell is made far worse by the prevalence of institutional racism. In several past debates and in various inquiries, reports and personal accounts, we have heard how racist attitudes have a negative impact on a patient’s healthcare and experience: lack of research, which is certainly a major issue with sickle cell; biased perceptions of pain tolerance, drug habits and medical knowledge; and experiences of overt racism. All of that makes the experience of living with any condition difficult, but it makes living with sickle cell even harder.
When we talk about institutional racism in the NHS, we are sometimes met with Conservative Members saying, “Why are you calling our NHS staff racist?”. We are not calling NHS staff racist; we value our NHS staff. We are recognising that the institution of the NHS, which is governed by the Government, has issues when it comes to race, and that the policies and practices create biases that cause us problems. We want to know what the Government are doing about that.
Sickle cell is often referred to as an invisible illness, because of how the pain is experienced—often it is invisible to others. However, there is also a distinct lack of education and public awareness of the condition and the symptoms. I point specifically to the issue of education. I studied biomedical sciences and specialised in cellular pathology as an undergraduate. Because of the amount I knew about sickle cell before I went to university, I was struck by just how much it was used as an example but just how little those teaching me knew about its practical aspects. If we do not improve the education of those who treat people, we are never going to improve the outcomes. That definitely needs to be looked at.
The recent removal of discriminatory blood donation restrictions on black donors was a massive step in the right direction, which I really welcome. The largest beneficiaries of the change will be those patients who are often treated through blood transfusions and need rare blood subgroups, such as Ro, that are more common in black people. I have that blood group, so I give blood. Blood donations have gone down rapidly during the pandemic, but they are needed no less at the moment. I encourage all people from the black community, and from all communities, to give blood. I would love to see a blood donation stand in Parliament one day; there are so many of us here, and we should all be able to roll up our sleeves and give a pint or two.
Jim Shannon
I think that the Government have been keen to have blood donations, and the hon. Lady has very kindly volunteered and has been donating. She could perhaps be a poster lady for the campaign. Maybe the Minister will take that on board.
Bell Ribeiro-Addy
I thank the hon. Gentleman for his contribution, and look forward to seeing him roll up his sleeve as well.
Maintaining those discriminatory blood donation rules for so long was really poor. They were based on outdated HIV science and denied thousands of black sickle cell patients the treatment that they needed, but not only that; the legacy of those rules resulted in a reluctance among the black community to come forward to donate blood. The restrictions have resulted in a shortage of black blood donors and have had a severe effect on the willingness of the black community to donate overall. We have to undo that damage.
I call on the Minister to promise all of us here, and those who are keenly watching the debate, that the Government will act to improve the quality of care and treatment of sickle cell patients. Words are good, but action is better. My hon. Friends have touched on prescriptions and the barriers to receiving proper care. We want action on that. Those watching the debate at home do so in eager anticipation of something that will give them hope of better treatment. I sincerely hope that the Minister will not let them down.
Maria Caulfield
The hon. Member makes an excellent point. The HCCs—the 10 specialist networks that have been set up around the country—will do just that. People will be registered, so that anyone who lives where there is a sickle cell community but no specialist provision is available can feed in and advice can be passed back and forth. This is the start of the process of making that happen in practice. There has not yet been an evaluation because the service is very new, but it is expected that when it publishes the results of its activity a significant improvement in standards will be seen. The results will be used to target areas of concern. We will see where improvements have been made and where improvements still need to be made. Once the service starts to report back, I think colleagues will be pleased with the progress.
The education and awareness of medical professionals was raised by everyone in the debate, and was highlighted in the “No One’s Listening” report. Health Education England has recently made improvements to the medical curriculum in relation to sickle cell and thalassaemia, and now the curriculum has, as core competencies, modules on those. Health Education England has held discussions with royal colleges to ensure that the curriculum is delivered to all four nations.
There are now two e-learning modules with sickle cell content—NHS screening programmes and the maternity support worker programme—and other e-learning programmes on wider areas, such as anaesthesia, radiology and pain management, are also including sessions on sickle cell. We are making some progress on that, but for me, as someone who has worked in healthcare, that education needs to be ongoing. It is great for people to get some education when they are students, but if they do not come across a sickle cell patient for five or six years, that learning might be at the back of their mind. We also need to focus on ongoing education.
NHS Blood and Transplant is working really hard to improve the service experienced by patients. Given that, until recently, blood transfusions were one of only two treatments for these conditions, much work has been done on that. NHS Blood and Transplant submitted, I believe, evidence to the report and described a number of areas in which it is involved that could be improved. Some of that is being worked on right now, including improving matching of more donors of African descent, improving co-ordination of care and improving consistent access to red cell exchange services. Some work is being done specifically on that area.
As has been mentioned by many colleagues, we know that sickle cell disease is particularly common in people with African or Caribbean family backgrounds. Health inequalities are made much worse if someone has sickle cell or has experienced covid, and we know that in maternity, women from black and Asian ethnic groups have disproportionately negative outcomes. I am meeting the Equalities Minister fairly soon to look at the specific areas of health where black communities in particular are disproportionately affected and have poorer outcomes. I am happy to update colleagues—we are very keen to look at those areas—and to work jointly with the Equalities Minister to improve outcomes in those areas.
The Office for Health Improvement and Disparities, launched this October, plans to tackle health disparities across the UK. The NHS Race and Health Observatory has also developed a new evidence-focused remit to tackle ethnic health inequalities, and sickle cell is one area that it is looking at. Coinciding with the launch of the APPG report in November, the observatory appointed a sickle cell expert, Dr Carl Reynolds, to drive forward work in this area. He is reviewing the evidence that contrasts sickle cell care with other rare genetic diseases, to examine the robustness of sickle cell patient care pathways within the NHS. That work will additionally support the work of other organisations and build on many of the report’s findings.
I will just touch on research and treatment. As, I think, the right hon. Member for Wolverhampton South East said, a new drug has been developed, and recommended by NICE, for sickle cell disease—the first in more than 20 years. It is expected to reduce the number of times that a patient will end up in A&E and go through a crisis. Research is vital to develop new drugs and improve treatments, and I want to reassure colleagues that funding is available.
The National Institute for Health Research has £1 billion per year set aside for research, researchers on any condition can apply for funding from that pot. It is often the case that researchers for rare diseases such as sickle cell do not come forward with proposals because there tend to be far more researchers and clinicians for better-known conditions, and far more charities driving researchers forward to apply for research funding. Not only funding, but help and guidance is available. If there is research that clinicians or academics want to do in this area, we are very keen to see them come forward and apply for that funding. If they are not successful, they will receive feedback as to why that was. Funding is available; it is not ringfenced for any particular condition, so researchers on all conditions may apply.
In conclusion, I again thank all members of the APPG for their hard work on behalf of the sickle cell community, but also for their important report, which highlights many of the discrepancies and gaps that sickle cell patients have been facing. Deaths such as Evan’s, simply because of a lack of care and expertise when he was admitted to hospital, are unacceptable, and we want to change that. I think that today’s debate really highlights how much work there is to do
Bell Ribeiro-Addy
Before the Minister sits down, there is one point that I do not believe she has touched on—prescriptions. I should be grateful if she would let us know whether the Government have any plans to make prescriptions free for people who require medication for sickle cell.
Maria Caulfield
The hon. Member makes a good point. Most patients are probably young, of working age, and have to pay for their prescriptions, but around 89% of all community prescriptions are not paid for—they are free at the moment—and for those with long-term conditions, such as sickle cell, there are the prepayment certificates covering prescriptions for around £2 per week, no matter how many items they have to order. If, say, someone needed three items, that gives a saving of around £228 per year. I know that that does not give free prescriptions, but it is an existing system that patients are often not told about, and it can offer huge savings. I am happy to discuss that with the hon. Member after this debate.
I want to reassure colleagues that a huge amount is being done by the Department to improve the treatment of sickle cell patients. Clear and positive work is under way. It is quite new and innovative, and we hope it will make a difference in a very short space of time. There are still gaps in the provision of services.