BAME Blood, Stem Cell and Organ Donation

Colleen Fletcher Excerpts

Wednesday 27th June 2018 Westminster Hall

[Tulip Siddiq (Hampstead and Kilburn) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Henry. I thank my hon. Friend the Member for Bedford (Mohammad Yasin) for securing this debate on an issue that is so important to my constituents in Hampstead and Kilburn. I will speak briefly.

More than 2,000 incredible people from Hampstead and Kilburn are on the Anthony Nolan stem cell register, a large proportion of whom are from BAME backgrounds. I mention that fact because, as Members from across the House have said, only 20% of patients from BAME backgrounds will get a perfect match, compared with 69% of people from white northern European backgrounds.

[Colleen Fletcher (Coventry North East) (Lab)]

I declare an interest: my husband had a stem cell transplant three years ago. His donor came from this country. Does my hon. Friend agree that, if we are to meet the needs of BAME patients who require a stem cell transplant, we must work with international registers? Increasing BAME donation in the UK alone is not enough. Some 60% of UK patients already receive stem cell transplants from international donors. That is made possible by Anthony Nolan’s incredible volunteer couriers, who collect donated stem cells around the world and transport them to patients. I hope the Minister will explain what steps the Government will take to support international registers.

[Tulip Siddiq]

My hon. Friend has stolen one of the questions I was going to ask the Minister, but I will forgive her.

In 2016, a young woman in my constituency called Lara, who was 27 years old and from a BAME background, needed a stem cell donor. The constituency snapped into action and organised the Match4Lara campaign. Elana Wall and Jacob Haddad, the volunteer co-ordinators for Anthony Nolan, co-ordinated 40 volunteers who spent their evenings packing spit kits and organising spit drives and spit drive socials. I went to a spit drive in the O2 Centre on Finchley Road, and I was impressed by the enthusiasm of the youngsters—especially those from a BAME background—who realised that if they took the spit test on the spot, there was a chance they could save a life. My younger sister, Azmina, participated and said that she found the science very accessible. She understood that she needed to raise awareness of the issue among young people. She has recently had a call to say that she could be a potential match for a patient.

Will the Minister address the request to integrate awareness-raising into the school curriculum? Will she talk about how the Department of Health and Social Care can work with international donor banks? That issue has been raised a few times already. How does she intend to spread the word about stem cell donation among young people, especially those from BAME backgrounds?

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

It is a pleasure to serve under your chairmanship, Sir Henry. I thank the hon. Member for Bedford (Mohammad Yasin) for securing this important debate on an issue that has been exercising me for the past year. Since I became Minister with responsibility for this area, the disparity in access for people from black and minority ethnic communities to blood, organs and stem cells has been of great concern to me. I have been working with NHSBT on this theme for the past year, and I hope I can give the hon. Gentleman some comfort. We are making some progress, but I want to assure all hon. Members that I am under no illusions about how big this challenge is, for a host of reasons that I will come on to.

I thank the hon. Member for Wolverhampton South West (Eleanor Smith) for being here. I read her report with interest and agreed with every word. The principles she articulated are key to increasing donation. If I were to highlight one particular issue, it would be the culture of normalising donation in those communities. The hon. Member for Hampstead and Kilburn (Tulip Siddiq) has just given a beautiful example of how local leadership can do that, and that is something we can all take away.

Whenever we debate a subject like organ and blood donation, everyone brings their own personal story, because we have all been touched by people who have needed a transplant. That is what brings the issue alive for us; it is about saving lives.

My overall objective is to increase the rate of donation across the board. Although it is true that a person is more likely to die waiting for a transplant if they are from a black and minority ethnic community, the fact is that we are losing too many people who are waiting for a transplant. We need a concerted effort to improve the rate of donation from all parts of our society. There is much we can do to achieve that. Hon. Members will be aware of the private Member’s Bill from the hon. Member for Coventry North West (Mr Robinson), which seeks to change the opt-out system. It will be a big help, but it will not solve the problem by itself. There is a lot more we need to do to educate the public about the importance of donation and to dispel the fears and myths about it.

[Colleen Fletcher]

The Minister mentioned the private Member’s Bill of my hon. Friend the Member for Coventry North West (Mr Robinson). I hope she is aware that stem cell transplantation is very much done when the person is alive, which is what makes it so easy. People do not have to die to donate. I just want to make sure people listening to this debate know that.

[Jackie Doyle-Price]

That is a point well made. It is the same for blood, of course—donors do not have to die to give blood. People who give blood do so regularly because they get into the habit and it has become normal. Perhaps we need to do a lot more about stem cell transplants.

I am particularly moved to be having this debate today because only this weekend I lost a very good friend of mine to lymphoma at the age of 47. That brings home how cancer and illness can kill people at a very young age. It will be in honour of my dear friend David Furze that I will do something to reboot stem cell donation.

On the barriers to more donation, some have serious concerns about faith and religious beliefs. Tackling those concerns is a big challenge for us in Government, because of the element of trust. The hon. Member for Bedford mentioned that quite often people do not trust medical professionals, but they trust Government even less. We must find innovative ways of getting that message out. We need the right messengers. Dare I say, the people in this Chamber are among the right messengers? Most of us have respect in our communities and are able to show leadership in our communities. We can go out, speak, raise awareness and encourage donation. I have given NHSBT the challenge to do exactly that.

Cancer Strategy

Colleen Fletcher Excerpts

Thursday 22nd February 2018 Commons Chamber

[Colleen Fletcher (Coventry North East) (Lab)]

It is a pleasure to follow the hon. Member for Bosworth (David Tredinnick), who made an interesting speech. I also thank the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) for securing this important debate.

We all know someone who has had, or has been affected by, cancer. My family is no exception: both my parents had cancer and my husband lives with cancer every day of his life, and I could talk about cancer forever—but, Madam Deputy Speaker, I will try to limit myself to the recommended time.

The cancer strategy sets out strategic priorities and recommendations that aim to improve radically the outcomes that the NHS delivers for people affected by cancer, yet we also know that the specific needs of blood cancer patients are not being fully met by the cancer strategy. That is primarily because the experience of blood cancer patients is different from that of solid tumour cancer patients, so general cancer services are not always effective in meeting their needs.

These unmet needs occur in a number of priority areas identified in the cancer strategy, including awareness and early diagnosis, patient experience, living with and beyond cancer, access to new treatments and research, and NHS commissioning. Today, I want to focus on one particular issue: the need to improve post stem cell transplant care for blood cancer patients. This issue overlaps with a number of the aforementioned priority areas: patient experience, living with and beyond cancer, and NHS commissioning.

It is estimated that by 2020 there will be more than 16,000 people in the UK living post transplant, many of whom will be experiencing both physical and psychological side-effects from their treatment which can last for months or even years. The side-effects can include graft versus host disease, second cancers, infertility, depression, isolation and post-traumatic stress disorder.

Unfortunately, we know that there are worrying gaps in the care and support available to stem cell transplant patients after treatment. It is particularly concerning that only half of those who need psychological support actually receive it. The same is true for practical support: one in five are not offered any specialist care to help with elements of their physical recovery. These statistics are reflected in the experiences of many blood cancer patients, who feel that the level of support available to them falls away when they are sent home after their transplant. They feel that they have no one to talk to about the effects of the transplant, the challenges of late complications, the psychological burden of living with and beyond cancer and its treatment, their dietary needs, their infertility problems or practical issues such as when they can start to resume the everyday activities that they enjoyed before their treatment started.

This is happening because the commissioning of post transplant services is simply not working for every patient. After 100 days, responsibility transfers from NHS England to the clinical commissioning groups, but evidence suggests that this arbitrary cut-off can lead to fragmentation and gaps in the care and support offered to patients. To remedy this situation, there must be a review of the 100-day cut-off, as well as of the care currently provided to patients after a stem cell transplant, to ensure that all patients can access the support they need. This includes ensuring that all patients have access to appropriate emotional and psychological support services and to a clinical nurse specialist or the equivalent model of support, both of which are pledges in the cancer strategy.

This issue very much ties into what the cancer strategy says about the commissioning of cancer services being “highly fragmented”. The strategy recommended

“setting clearer expectations, by the end of 2015, for how cancer services should be commissioned”,

and as we head rapidly towards 2020, it is important that we continue to work hard to resolve the confusion that still exists. I hope that the Minister will be able to update us on how work in that area is progressing. I have outlined just a few of the priority areas where much more needs to be done to ensure that blood cancers and the needs of blood cancer patients are appropriately addressed by the cancer strategy. I believe that thorough and robust action in these and a number of other key areas will have a significant impact on outcomes for blood cancer patients, improving care on their journey from diagnosis to treatment and through to recovery.

NHS Blood Cancer Care

Colleen Fletcher Excerpts

Wednesday 17th January 2018 Westminster Hall

[Colleen Fletcher (Coventry North East) (Lab)]

Thank you, Mr Wilson. It is a pleasure to serve under your chairmanship. I commend the hon. Member for Crawley (Henry Smith) on securing the debate, which, as we have heard, is particularly timely, given today’s launch of the report by the APPG on blood cancer, “The ‘Hidden’ Cancer: The need to improve blood cancer care”. I was happy to be a small part of that. The report makes significant recommendations, all of which I, as a member of the APPG, fully endorse, about improving care for blood cancer patients on their journey from diagnosis to treatment and through to recovery.

I shall focus my comments today on the commissioning of stem cell transplantation and the inconsistencies in post-transplant care. There is a common misconception that if a blood cancer patient finds a matching donor and undergoes a stem cell transplant, they are out of danger—that that is the beginning of the end of their journey, the point from which they get better. In reality, nothing could be further from the truth. Although a stem cell transplant is a potentially curative treatment for blood cancer patients, recovery can be a long and difficult journey. Many of those living post transplant will experience severe and debilitating physiological and psychological side effects from their treatment, not only in the first few days, weeks and months after the transplant, but many years down the line. Indeed, a transplant patient is often described as “a patient for life”.

The side effects include physiological problems, such as graft versus host disease and a higher risk of second cancers, infections, infertility, premature menopause and fatigue, as well as psychological effects, including isolation, depression, anxiety and post-traumatic stress disorder. Patients dealing with the impact of a stem cell transplant, and particularly those receiving an allogeneic transplant, therefore require ongoing support from appropriately qualified health professionals.

The problem is that the provision of high-quality post-transplant care varies significantly across the country, leaving vulnerable patients at the mercy of the often fragmented and inequitable postcode lottery NHS, in which some get very good support but others get very little.

Recent research by the charity Anthony Nolan reveals that many patients are struggling to access the services that they need post transplant. It is particularly concerning that only half those who need psychological support, such as counselling or group therapy, receive it. The same is true for practical support, such as help at home or with getting back to work; and one in five is not offered any specialist care to help with elements of their physiological recovery, which includes access to physio- therapists, dieticians and fertility experts.

To address the areas of unmet need, we must reform the commissioning of post-transplant care. Currently, responsibility for commissioning services transfers from NHS England to CCGs after only 100 days. There is evidence that that arbitrary cut-off leads to gaps and variation in the care and support that hospitals are able to provide, despite their best efforts. That increases the burden on patients and their families, making their recovery much more difficult. As recommended by both the APPG report and Anthony Nolan, it is essential that NHS England reviews the 100-day cut-off in order to eliminate the inconsistencies and fragmentation in post-transplant care across the country. I hope that the Minister addresses that point in winding up the debate.

As part of the process, we should consider the creation of a national care pathway for patients for at least five years post transplant. That pathway should ensure that patients have access not only to the full range of physiological, psychological and practical support services after their transplant as well as before and during, but to a clinical nurse specialist—or equivalent model of support—who can help them through their recovery journey, managing their care and plugging some of the gaps that would otherwise exist.

[Mr Gregory Campbell (East Londonderry) (DUP)]

The hon. Lady is talking about the system required in a post-transplant period. Does she agree that every individual is obviously significantly different and there may well be a significant difference in the amount of time required immediately after the transplant and subsequently for a period of years, and that that needs to be taken into account as we go forward?

[Colleen Fletcher]

I thank the hon. Gentleman for that intervention. Yes, I agree. People are totally different. Some, I know, have sailed through with few problems, and others have had many problems occur after the 100 days.

People may know that my husband, Ian, had a stem cell transplant more than three years ago, just after being diagnosed with acute myeloid leukaemia. What I have said today reflects his journey. He has been a beneficiary of cutting-edge research, which has allowed his cure, but we have also experienced some of the inconsistencies along a journey that has been too long to narrate today. It is from that experience, and from my heart, that I ask the Minister to look at a fully funded care pathway for at least five years post transplant, with the specialist care needed to allow people the chance to live their lives again as fully as they can.

Children’s Oral Health

Colleen Fletcher Excerpts

Tuesday 31st October 2017 Westminster Hall

[Colleen Fletcher (Coventry North East) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Bone.

I congratulate my hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe) on securing this debate on child oral health and tooth decay. I agree with all his comments, in particular those about sugar consumption and supermarket offers on high-sugar products. Anyone who has been in a supermarket over the past couple of weeks will have seen the huge amount of Halloween offers on sugar products for children for trick or treating—“two for one” or “buy one and get four free” and so on.

Poor oral health is an extremely important yet too often ignored issue that represents a major public health challenge, both in relation to its adverse impact on our children’s health and wellbeing and to the NHS budget and wider resources. We have already heard that when it comes to oral health, too many of our children quite literally have nothing whatever to smile about. Every area of the country is affected by poor childhood oral health to varying degrees, including Coventry, the city that I represent. The proportion of five-year-olds in Coventry with tooth decay stands at almost 30%, which is considerably higher than the England national average of 25%. Worryingly, the proportion of hospital admissions for tooth extractions in the city has increased by a massive 60% since 2010.

Children with poor oral health are likely to have decayed, missing and filled teeth that can cause severe pain, infection, sleepless nights, weight loss and developmental problems. But not just their physical health is adversely affected; they also often experience psychological problems such as low self-esteem, a lack of confidence, conduct disorders, reduced school performance and social functioning, and an increase in bullying. These physical and psychological problems combined are likely to have a huge impact on a child’s life and even on their long-term life chances, as we have heard.

There are significant pressures on NHS services and finances. Tooth decay is the leading cause of hospital admissions for young children and the NHS wastes hundreds of hours and millions of pounds each year dealing with the consequences of the problem through tooth extractions that range from a single tooth to full mouth clearances—a dreadful thought in children so young. All that proves that the economic costs of childhood tooth decay are as unsustainable for the NHS as the human costs are unacceptable for the child.

We can stop tooth decay in its tracks, because it is almost entirely preventable, as we have heard. We can tackle the problem by providing better oral health education, by improving public awareness of and access to children’s dental services and by addressing poor diet—particularly excessive sugar consumption. I agree with all the measures to prevent tooth decay that have been mentioned. But clearly, the statistics show that more needs to be done. Simple preventive steps and accessible information can mitigate the impact of poor oral health both on the individual and on our health services. Surely we can all get behind that.

Tobacco Control Plan

Colleen Fletcher Excerpts

Thursday 19th October 2017 Commons Chamber

[Stephen Kerr (Stirling) (Con)]

With your kind permission, Madam Deputy Speaker, as a Scottish MP I hope to make a short contribution to the debate on a tobacco control plan for England. I shall make some reference to the situation in Scotland, to highlight the cost of smoking in human suffering and death, as well as the cost impact on public health budgets and the overall economy. I welcome the debate on this vitally important matter and congratulate the right hon. Member for Rother Valley (Sir Kevin Barron) on securing it. I also applaud the Backbench Business Committee for granting the time.

The tobacco control plan builds on the successes of the previous control plan, established by the coalition Government, and aims to herald a smoke-free generation—I say that while recognising that much yet needs to be done. I wholeheartedly support the principle of preventative spending on early intervention, which can prevent negative health outcomes later in life. I also welcome the investment in tackling ill health and recognise that it has the potential to save a significant amount of public spending in the long term and can help to reduce health inequalities. I do not underestimate the power of addiction. For that reason, I feel that where there is a will to stop smoking we should do everything possible to help people to help themselves.

I welcome recent falls in the number of adults who smoke in England and Scotland, and the number of children exposed to second-hand smoke. However, smoking rates in Scotland are still higher than in England, and we must be prepared to do much more to reduce this figure. Currently in Scotland, tobacco use is linked to 10,000 deaths a year.

On e-cigarettes, I am a firm supporter of having a robust regulatory framework, which ensures all devices are safe and acknowledges their potential use in smoking-cessation programmes. I welcome the fact that earlier this year the Scottish Parliament voted to ban the sale of e-cigarettes to under-18s and to limit advertising, moves I fully support because they will protect the health of our young people.

On the tobacco control plan for England, I acknowledge that the previous plan reduced adult smoking rates in England from 20.1% to 15.5%. That is indeed progress. I also applaud the ambition in the plan to reduce adult smoking rates from 15.5% to 12% or less by 2022. It is welcome that the plan is supported by the British Heart Foundation, which recognises it as an important tool in reducing the rate of strokes and heart disease. I compliment the Government on the fact that the World Health Organisation has designated England as one of the best places in the world to give up smoking. The strategy is based on a joined-up approach between the NHS, the Department of Health and local government. That can only be good, too.

I welcome the ambition of the plan to reduce the number of 15-year-olds who regularly smoke from 8% to 3% or less; reduce the smoking rates among adults in England to 12% or less; reduce the inequality gap in smoking prevalence between those in lower paid, routine and manual occupations, and those in higher paid professional and managerial occupations; and reduce the prevalence of smoking in pregnancy from 10.7% to 6% or less. I also applaud making all mental health in-patient service sites smoke-free by 2018, as was mentioned by my hon. Friend the Member for Witney (Robert Courts). It has been a source of frustration for me for many years, as I am sure it has been for other Members, to visit hospitals for various reasons and find people congregated around the entrances, often having been escorted there by health workers who I am sure would prefer to be doing more productive things. I also welcome the ambition of permitting innovative technologies than minimise the risk of harm and maximise the availability of safer alternatives to smoking.

I hope we all support the idea of creating a smoke-free generation without any reservation. Effectively enforcing existing legislation on proxy purchasing and standardised packaging to reduce the uptake of smoking among young people is a very noble objective. Supporting pregnant smokers to quit, which will undoubtedly increase the life prospects of children yet unborn, and reviewing the sanctions for retailers who consistently break the law designated to protect young people from smoking, is welcome. As the right hon. Member for Rother Valley mentioned in his opening speech, in 2016 it was estimated that 2 million people had used e-cigarettes and had completely stopped smoking—that must be very good news—while at the time a further 470,000 were using them as an aid to quit.

In 2013, the Scottish Government introduced a five-year tobacco control strategy entitled “Creating a Tobacco-free Generation”. It set the target to reduce smoking prevalence in Scotland to 5% or less by 2034—again, a very ambitious and welcome target. The strategy set out a range of measures to support young people to choose not to smoke, to protect children and all people from second-hand smoke, and to continue to support those who do smoke to quit. Actions taken by the Scottish Parliament in recent years to control tobacco, and to limit and tackle the harm caused by tobacco, include legislation to prohibit smoking in public places, which came into effect in March 2006; raising the age of sale for tobacco from 16 to 18 in 2007; implementation of a tobacco retail register in 2011; a ban on self-service sales from vending machines in 2013; and the introduction of a tobacco display ban in shops from 2013.

I turn now to the impact of smoking. According to Scottish Government statistics, tobacco use in Scotland is associated with more than 10,000 deaths and about 128,000 hospital admissions every year. According to the Office for National Statistics, smoking prevalence in Scotland among over-16s was 17.7% in 2016—an estimated 942,644 smokers—compared with the UK-wide smoking prevalence of 15.8%. Smoking prevalence in Scotland fell between 2003 and 2013 but has remained fairly static since. Some 35% of adults in the most-deprived quintile of the Scottish index of multiple deprivation smoke compared with 11% in the least-deprived quintile.

According to ASH Scotland, on average lifelong smokers die about 10 years sooner than non-smokers. The estimated cost to the NHS in Scotland alone is £323 million. According to the Scottish Public Health Observatory, for every 1 percentage point by which smoking prevalence is reduced, the NHS could save £13.4 million. One last set of numbers underlines the cost of smoking: ASH Scotland estimates that smoking costs Scotland around £1.1 billion annually, including £271 million in healthcare costs, £692 million in productivity losses due to active smoking, £60 million in productivity losses due to passive smoking, £34 million in clearing smoking-related litter and £12 million in fires caused by smoking in commercial properties.

[Colleen Fletcher (Coventry North East) (Lab)]

As an ex-smoker who went cold turkey many years ago, I agree with most of what has been said. Like many others, however, I come from a family where parents and grandparents smoked. I welcome all measures to help people to stop smoking. Does the hon. Gentleman agree that we need more investment in prevention, not least through public health budgets, but that those are now in the hands of local authorities, the cuts to which have been abominable over the years? Does he agree that more money needs to be invested in public health?

[Stephen Kerr]

I note in the plan the £16 billion commitment to funding public health programmes, in conjunction with local authorities in England, which is surely welcome news.