Leprosy Mission Scotland
The final item of business today is a members’ business debate on motion S4M-05260, in the name of Bruce Crawford, on the Leprosy Mission Scotland. The debate will be concluded without any question being put.
Motion debated,
That the Parliament recognises what it considers the vital work being carried out by The Leprosy Mission (TLM) Scotland, based in Stirling, in helping people across the globe with leprosy, a disease that, it understands, affects one person every two minutes, particularly those living in extreme poverty; acknowledges the impact that TLM Scotland is having in the TLM Global Partnership, helping to achieve freedom from stigma and poverty, and hopes that World Leprosy Day 2013 will assist in bringing awareness and increased recognition to this cause.
17:10
I thank the members who signed the motion—a good number did so—and those who will participate in the debate or are here to listen.
I very much welcome Linda Todd and staff and volunteers at the Leprosy Mission Scotland, which is based in my constituency, to this important debate. The staff and the many volunteers at the Stirling office do a remarkable job. During my visits to the premises I have always been hugely impressed by their compassion, commitment and enthusiasm, as I know has Anne McGuire, the local MP. The fantastic work that the organisation carries out is supported by more than 4,000 individuals and 350 churches and groups.
On 27 January, more than 100 countries around the world will mark world leprosy day. World leprosy day falls on the anniversary of the death of Mahatma Gandhi, a human being who showed true compassion for people affected by leprosy worldwide. Gandhi not only preached to people that they should help people afflicted by the disease but was personally involved in the work. This year, world leprosy day celebrates its 59th year.
Meanwhile, the Leprosy Mission Scotland continues to bring healing and justice to people who are affected by the disease in around 30 countries, in Africa, Asia and around the Pacific. It is the biggest and oldest organisation that specialises in the causes and consequences of leprosy worldwide. It is well known and respected by not just local communities but the large, established agencies that work in international development. It currently funds projects in Angola, Bangladesh, India, Myanmar, Nepal, Nigeria and South Sudan.
Thank goodness for the Leprosy Mission Scotland’s work. The disabilities that leprosy causes affect around 4 million people worldwide and around 10 million people live disadvantaged lives as a result of the disease. Today, between 600 and 700 people will be diagnosed with leprosy—one person every two minutes. However, it is not all bad news. During the past 20 years, more than 14 million people have been cured of leprosy and the disease has been eliminated from 119 countries.
According to the World Health Organization, more than half the newly reported cases are in India, and high levels are still found in Bangladesh, Brazil, China, Democratic Republic of Congo, Ethiopia, Indonesia, Madagascar, Mozambique, Myanmar, Nepal, Nigeria, Sri Lanka, Philippines, Sudan, Tanzania and Timor-Leste—I read out the list to show members the scale of the problem.
As we know, leprosy can be permanently cured, through a six to 12-month course of multidrug therapy. Early diagnosis and treatment can prevent the spiral of physical, social and psychological despair that people can find themselves plunged into, but many cases still go undetected each year, particularly for people who live in rural and remote places where even basic healthcare is limited. However, to cure and care for someone with leprosy for a year costs as little as 40p a day or £12 a month.
The Leprosy Mission Scotland works hard to raise the resources to help transform the lives of people affected by leprosy, taking people affected from rejection to acceptance and from poverty to economic independence. It is a truly global fellowship, with the ultimate goal to eradicate the causes and consequences of leprosy.
Linda Todd, chief executive of the Leprosy Mission Scotland, visited South Sudan in September. Shockingly, Linda told me that, if the mission returns to that area of South Sedan, it will be the first organisation to do so. The Leprosy Mission Scotland has rightly made it its aim to return and help the people whom it met.
In 2010, the Leprosy Mission Scotland was awarded three years of funding from the Scottish Government south Asia development programme, totalling more than £199,000. The funding is being used to fund the project in Chittagong in Bangladesh, transforming the lives of the leprosy sufferers in hill districts of Chittagong.
Leprosy is a cruel, cruel disease that affects the poorest in society, particularly women, robbing people of not only their physical health and wellbeing but often of their most basic entitlements. Fear, prejudice and superstition in many communities mean that people affected by leprosy have to cope with not just the effects of the disease but the stigma attached to it. Stigmatisation and alienation from the families and communities that form the fabric of their lives add to leprosy sufferers’ devastation. As a former leprosy sufferer said:
“Leprosy is a ruthless thief, which first turns off all the lights before you notice that there is an intruder. Then in the total blackout it viciously created, it robs you of every single irreplaceable treasure you possess.”
On behalf of all my MSP colleagues, I thank from the bottom of my heart the Leprosy Mission Scotland for all its hard work and for helping to remind us that, with the right resources and investments, we can achieve a world without leprosy. It is now up to people like us to respond.
17:17
First, I give a warm welcome to the Parliament tonight to the Leprosy Mission Scotland, which is based in Stirling. I am delighted to contribute to this debate on the work of charities tackling the disease of leprosy. I thank Bruce Crawford for securing parliamentary time to recognise the importance of world leprosy day, which is to be held on 27 January 2013.
Leprosy is a debilitating disease that affects the lives of millions of people all over the world and devastates families who have no access to the appropriate medical treatment. Developments in modern medicine have allowed sufferers of leprosy to be cured entirely, though tragically the medical resources are too often unavailable in the areas where the disease is most prevalent. Communities across the developing world are hardest hit by leprosy, which is usually a cause of extreme poverty and, if left untreated, can reduce the lifespan of a sufferer by up to 50 per cent.
The Leprosy Mission has worked to tackle the misunderstanding and stigma associated with leprosy and has raised awareness of the plight of millions of people worldwide who continue to suffer from the disease. The world leprosy day event will provide another platform to increase the profile of the disease and potentially secure the kind of resources that would make a difference to those without access to medical treatment or even the knowledge that the disease is curable.
The Leprosy Mission Scotland works internationally across 30 countries from Africa to Asia and in many nations in between, with the goal of eradicating the causes and consequences of leprosy. Volunteers here in Scotland have recognised the devastating effect that the disease continues to have in the 21st century. I am sure that the entire Parliament would join me in recognising the importance of those efforts as part of the wider action to tackle poverty and disadvantage in developing nations.
The prevalence of leprosy represents more than the disease itself. It highlights the extreme poverty that so many people in developing nations endure, without access to appropriate medical or financial support—even in the most pressing times of need. It is entirely unacceptable that so many individuals should suffer from curable diseases in the 21st century and it is tragic that that suffering is compounded by the misunderstanding and stigma that still surround leprosy worldwide.
Through the proper support and recognition of movements such as the Leprosy Mission Scotland, the international community can make a real impact on that unnecessary suffering. Once again, I commend the efforts of all the activists and volunteers who have raised the profile of the disease, here in Scotland and across the world.
17:20
I congratulate Bruce Crawford on securing this debate on the terrible disease that is leprosy and the vital work that the Leprosy Mission Scotland is undertaking to tackle the suffering that leprosy causes across the globe.
To many, leprosy is an archaic disease that they may have heard of only through its depiction in popular culture. That portrayal is, of course, completely inaccurate and helps only to entrench the common misconceptions and stigmas that surround the disease, which is sadly still prevalent in the 21st century, as we have heard.
Leprosy has been with us a long time. A recent study reported the discovery of a 4,000-year-old skeleton in India with the hallmark ravages of the disease, which indicates that leprosy was present some 1,500 years further back than was once thought. It is now believed that the disease first appeared in the subcontinent and spread as urbanisation and trade routes grew.
The disease was once prevalent in Scotland and, of course, our very own Robert the Bruce was afflicted by it.
The disease is caused by the mycobacterium leprae bacterium, which attacks and destroys nerves, particularly in the peripheries of the body. Lesions on the skin are the main external symptom of the disease and the one with which most people associate leprosy. However, left untreated the disease can cause loss of sight, loss of feeling in the limbs and permanent disability.
Although scientific understanding of the disease has improved and effective treatments have been established, the disease is, sadly, by no means a disease of the past, as we have heard. In 2010, the WHO reported that over 212,000 new cases of leprosy had been detected. Of those, it is estimated that around half of sufferers developed irreversible deformities and/or disabilities. Failure to treat the disease at an early stage has resulted in millions of people across the world living with the permanent effects of leprosy. The vast majority of those cases are in India and Brazil: two of the world’s fastest growing economies, yet countries with deep-seated poverty. Unfortunately, due to the stigma and fear that surround the disease, which Anne McTaggart highlighted, many cases go unreported and it is therefore likely that the true figures are far higher.
Beyond the physical impairments that are caused by leprosy, it is clear that misinformation and superstition have created a disease that is, in effect, a taboo subject for many. In the middle ages, that led to the widespread creation of leper colonies, in which sufferers were segregated from society for fear of contamination. Although leprosy is infectious, 95 per cent of people are naturally immune and, despite misconceptions, the disease is very difficult to contract and cannot be spread by touch. Despite that, it is appalling to note that leper colonies still exist in many countries, with 1,000 estimated to remain in India alone.
We hear heart-breaking stories of family members, young and old, being disowned and cast out of their communities for fear that their condition will bring shame upon the family. Tackling that ignorance and the social segregation that is suffered by those who have ended their battle with the disease is surely as important as enhancing the availability of treatment against the disease.
Although the situation remains very serious, it is encouraging to note that real progress has been made in recent decades. Medical advances in the late 80s and in the 90s found effective vaccines to fight the disease and saw the establishment of multidrug therapy regimens. Those advances have been hugely effective and sufferers are no longer infectious after a matter of days and are free from the disease after a course of drugs that lasts around 12 months.
As a result of international initiatives through the WHO and the United Nations, coupled with scientific advances and the hard work of charitable organisations, 108 of the 122 countries in which the disease was considered endemic in 1985 have now realised the goal of eliminating leprosy. That represents tremendous progress and it is interesting that many of the countries that Bruce Crawford mentioned are those in which conflict prevents leprosy being adequately dealt with.
The work of the Leprosy Mission Scotland and its endeavours to bring about a world free from leprosy have been integral to that success. Through educating people about what leprosy is and tackling ignorance surrounding what it is not, the work of the Leprosy Mission Scotland continues to help remove the stigma attached to the disease and encourages those affected to seek treatment at the earliest possible opportunity. The Leprosy Mission Scotland’s charitable collections and its membership of the Leprosy Mission International have undoubtedly improved the availability of treatment, given that around 22,000 patients affected by leprosy have been treated at Leprosy Mission hospitals and tens of thousands more have been assisted financially. That has made a tremendous impact in combating the disease.
In conclusion, although there is clearly more to be done to eliminate leprosy, I am hugely encouraged that medical advances, improved education and the dedication of charitable organisations such as the Leprosy Mission Scotland will result in leprosy being completely eliminated and consigned to the history books, where it rightly belongs.
17:25
I, too, welcome the debate and congratulate Bruce Crawford on bringing the issue to the chamber this evening.
Even today, for many people leprosy is something associated with biblical times, when it was believed that conditions resulting in disfigurement were afflictions sent by God as punishment for sin. Similarly, people still often associate leprosy with the leper colonies that emerged in the middle ages, when the prevailing thinking was that the condition—which actually covered a multitude of ailments—was highly contagious so it was better to ship people off to remote locations in the mountains or on islands than to risk infection.
Of course, we in Scotland do not talk about leper colonies these days, but it may interest members to know that, as a young medical student nearly 50 years ago, on a public health scholarship to Yugoslavia I visited what was then called the leper hospital in Sarajevo. Thankfully, that was the only time that I have seen patients suffering from the effects of leprosy.
Obviously, what we might term biblical or medieval leprosy is far removed from the modern condition, but leprosy is not yet a disease of the past, as we have heard this evening. What is now known as Hansen’s disease still affects the lives of at least 3 million people worldwide. That is probably a very conservative estimate if we consider how difficult it is to obtain accurate and reliable data from some of the less well-developed countries. The stark fact is that, should this debate last 40 minutes, in that time 20 people will have been diagnosed as suffering from leprosy.
The motion rightly points to the work of the Leprosy Mission Scotland—an organisation with strong Celtic roots stretching back over a century—in tackling the stigma associated with people suffering from leprosy. These days, the term “leper” is rarely used for obvious reasons, given its connotations with outcasts. People suffering from leprosy should never be considered as outcasts. I note that the mission’s delete the L word campaign has gone some way towards persuading broadcasters that “leper” is now regarded as an offensive term.
Breaking the mindset, often fuelled by fear and ignorance, that leprosy sufferers somehow pose a danger to society is at the forefront of the mission’s aims and objectives. The sad fact is that in certain countries obstacles still remain for people diagnosed with the condition: sufferers are unable to use public transport; children are denied their education; splits occur in families if a wife is diagnosed or a child with leprosy is rejected; and employment is hard to find because of a misplaced fear of infection.
The Leprosy Mission Scotland is an organisation dedicated to eradicating the condition in many countries across Africa, south Asia and south-east Asia through various programmes, including treatment and general healthcare, prevention of disability by teaching people self-care and hospital treatment in clean environments where ulcers are treated, surgeries are undertaken and intensive physiotherapy sessions take place. Community rehabilitation is an important aspect, too.
The work of the Leprosy Mission Scotland is driven by Gospel teaching, compassion and prayer. The 4,000 individuals in 350 churches and groups in Scotland who give up their time for efforts to eradicate leprosy are an example to us all of the true meaning of voluntary service.
Although the Leprosy Mission Scotland is based in Stirling, its work is carried out across the country. As a North East Scotland MSP, I was interested to learn of the work of the mission’s Aberdeen area committee. Through coffee mornings and events in local churches, the Aberdeen area has raised more than £60,000 since the late 1990s for leprosy projects across the world, with the most recent work being in Angola.
For this Sunday’s world leprosy day, perhaps the message that we should keep at the forefront of our minds is that leprosy is and remains a 21st century problem.
17:29
I am pleased to have the opportunity to close the debate. All the members who spoke—Bruce Crawford, Anne McTaggart, Kenneth Gibson and Nanette Milne—made good speeches. The fundamental core that ran through their speeches is that leprosy is not a disease of the past, but is very much a 21st century problem that we must continue to tackle.
I congratulate Bruce Crawford on getting parliamentary time to debate this important issue. I reiterate his welcome to the Parliament to the staff of the Leprosy Mission Scotland, and I thank them for their incredibly hard work. I am, of course, very happy to support the motion on the work of the Leprosy Mission Scotland and to recognise the importance of world leprosy day in raising awareness of the condition.
At the invitation of the Leprosy Mission Scotland and Bruce Crawford, I had the great pleasure of visiting the Scotland versus poverty exhibition that the organisation hosted in Stirling. In the first few months of my new-ish ministerial role—I do not know whether I am allowed to say that it is new any more, because I have been in it for coming up to six months—I had the pleasure of meeting Linda Todd a number of times. She and her team are to be commended for the passion and determination that they display in helping some of the world’s poorest and most vulnerable people. I hope that she does not mind my saying that she is tenacious in taking the issue forward and ferocious in her determination to do her best for the Leprosy Mission Scotland.
Bruce Crawford referred to the Leprosy Mission Scotland project that is being funded by the Scottish Government. The generating income project in Chittagong has helped to improve the socioeconomic status of marginalised communities, especially those that have been affected by leprosy or disability. The project has created self-help groups and provided loans and training on income-generating activities. It has also raised awareness of leprosy in sessions targeted at local communities, their leaders and relevant members of the Government.
The project has had incredibly significant achievements. To date, it has formed 75 self-help groups involving 603 members, provided income-generating activity for more than 500 group members and training in agricultural methods, and promoted environmentally sustainable practices. The project has also granted small loans to 251 people, built 15 new houses in partnership with the community and held meetings with more than 4,000 participants to raise awareness of disability and human rights issues. Those are huge achievements. It is important to remember that behind those statistics are real people whose lives have been changed for the better by the project.
Projects of that size may not be able to single-handedly solve an enormous problem such as leprosy, but they have the ability to make a significant improvement for individuals and entire communities. We also have the opportunity to share the learning from such projects and to ensure that they are aligned to broader global efforts to eradicate leprosy. In that sense, the Leprosy Mission Scotland is well placed to influence international efforts in the field as it is part of the global development organisation, the Leprosy Mission.
The Leprosy Mission’s noteworthy holistic approach is worth looking at. By recognising that leprosy is a disease that stigmatises—that word was used by all the speakers in the debate—marginalises and impoverishes, the Leprosy Mission considers that the leprosy patient’s needs are holistic in the round, not only in relation to their medical needs, but in relation to support for vocational training, rehabilitation and counselling. Such measures help return dignity to a person who is suffering from leprosy. It is important to highlight the important role that non-governmental organisations play in civil society in relation to international development and that that holistic approach would not be adopted by anyone else if they were not there.
Organisations such as the Leprosy Mission Scotland pay a critical role in the fight for global justice. Such NGOs and civil society development agencies are important in a number of ways. Of course, NGOs can be a lot more fleet of foot than Government. Government can often find quick responses difficult, whereas NGOs can be quick to respond to the needs of citizens in partner countries. They often play a role as mediator or facilitator between excluded citizens and their states but, by helping specific individuals or communities, NGOs create bonds of trust and networks of co-operation that often transcend national boundaries.
When I visited the Scotland versus poverty exhibition in Stirling, I saw a number of people from the Leprosy Mission across the world who had come to Scotland—they were very brave to have done so, given that it was towards the end of the year. The fact that they came showed that the network of co-operation truly transcends national boundaries. I believe that it is critical that we support and bolster such links through our approach to international development, rather than try to work around them.
Civil society organisations and NGOs are important in other ways. Those who are motivated by compassion for others—who, of course, include people of faith—are often moved to consider why things are as they are. As has been mentioned in the debate, people ask why tropical diseases such as leprosy persist when they are curable and manageable. People’s motivation to search for the causes of such inequality leads to a lifetime of engagement in development issues and the fight against global injustice. I always say that once someone gets involved in such work, which is about helping others, they find that it is quite an infectious bug—it is extremely difficult to let go. The dedicated team at the Leprosy Mission Scotland have that quality in abundance.
I know that it has been said that there is still much work to be done, but there is cause for optimism, as leprosy can be cured and eradicated. Over the past 10 years, levels of prevalence have fallen by 75 per cent, thanks to the work of many organisations, including the Leprosy Mission. With ultimate success in sight, now is the time to redouble our efforts.
NGOs have a vital role to play, because they tell the world what kind of nation we aspire to be and what kind of country we are. The Leprosy Mission Scotland tells the world that Scotland is a compassionate and caring nation, and one that is ready to help the world’s most vulnerable people. I wish the organisation well in its endeavours, and I again thank Bruce Crawford for lodging the motion. The Scottish Government stands behind the continuing global efforts to eradicate leprosy, and we look forward to the day when we can consign world leprosy day to the past.
Meeting closed at 17:37.