Oral evidence: Disability and Development, HC 947-iiTuesday 21 January 2014

Oral evidence, 21 January 2014.

Witnesses

Professor Nora Groce, Director, Leonard Cheshire Disability and Inclusive Development Centre, University College London, Dr Tom Shakespeare, Senior Lecturer, Norwich Medical School, and former disability specialist, the World Health Organization, and Professor Graham Thornicroft, Professor of Community Psychiatry, King’s College London, gave evidence.

Chair

Thank you for coming in this morning. We do appreciate it and I hope those of you whom we have engaged with are pleased that we are finally getting to grips with this. Again, as I did for the last group, for the record, please introduce yourselves.

Dr Shakespeare

My name is Tom Shakespeare. I am a Senior Lecturer in medical sociology at the University of East Anglia Medical School, and previously was a Technical Officer at the World Health Organization Disability and Rehabilitation team.

Professor Groce

Hello. I am Professor Nora Groce. I am the Director and Chair at the Leonard Cheshire Centre for Disability and Inclusive Development at University College London. Our centre is one of the few in the world that specialises in applied research related to persons with disabilities in low‑ and middle‑income countries, and it is a collaboration between Leonard Cheshire Disability International, which is in 57 countries, and University College London.

Professor Thornicroft

Good morning. My name is Graham Thornicroft. I am Professor of Community Psychiatry at King’s College London, and I am also a Member of the Centre for Global Mental Health, which is a partnership between King’s and the London School of Hygiene and Tropical Medicine.

Chair

I can certainly say that you are a high‑powered academic panel. You have obviously been in on the previous discussions and you know where we have got to, so, just to pick up, it is ambition, I suppose. The World Health Organization says it wants a world where people with disabilities can enjoy the best and highest standards of health available, but frankly in low‑ and middle‑income countries many of them get no healthcare at all. The first question is: how can DFID help tackle that? Perhaps also, because we have not specifically talked about it, although it was made reference to, mental health is a major problem and yet people tend to talk about physical disabilities and almost do not even talk about mental health. I just wondered if you could address whether or not it should be incorporated right at the beginning and, if so, how. Who is going to start?

Dr Shakespeare

You started in the last conversation to talk about expensive healthcare. Certainly, what the World report on disability was talking about, in particular, was access to ordinary healthcare—healthcare on an equal basis to others. So many people in low‑income countries die because they develop an impairment that, in the West, would be easily remediable or survivable but, in a low‑income setting, is not. For example, I became spinal‑cord‑injured in 2008. In a low‑income country, I would most likely be dead by now, not because I needed life‑saving surgery or anything, but because I needed catheters and I needed to avoid pressure sores. It is those very basic things from which many, many people die and which reduce life expectancy. It is about valuing disabled people, understanding that with often fairly minor healthcare interventions they can survive, thrive and contribute, that we are looking to. If you look to the World report, one of the startling statistics was that disabled people were twice as likely to find healthcare providers, skills and equipment inadequate to meet their needs, three times as likely to be denied care and four times as likely to be treated badly. One of the things that I think is very important is training of healthcare providers. We are not talking about consultants at the top level; we are talking about basic health workers in the field treating disabled people as people worthy of services, worthy of inclusion, and meeting those basic needs.

Professor Groce

Let me just build on what Tom has said. We often have it in terms of disability prevention versus access to care but, in terms of overall programming, basic healthcare programmes, for example vaccination programmes for children, there is no reason why a deaf child should not be vaccinated or an intellectually disabled child should not be vaccinated. Too often, these children are not included in these simple preventive medicine projects that are out there that should include all children. It is the same thing with AIDS—AIDS information for people with disabilities, access to basic healthcare if you are disabled and you become infected with AIDS. Those sorts of things where there is an overlap are things that we do not think about and are very important that we include in just the basic programming that is available and funded by DFID in many communities around the world. I should also say that disability is a cross‑cutting issue. People with other types of disabilities also have mental health concerns. Sometimes when there is the cross between a physical disability and a mental health concern, the options available are even more limited, so we should think of these not in silos, but as a cross‑cutting issue that really can be addressed often at very little extra expense or no extra expense, as part of the programmes you already have and support in the field.

Professor Thornicroft

In terms of setting the scene further to what my colleagues have said, it is important to recognise that about a quarter of us across the world this year will have a mental health problem that could be diagnosed. That comes to 600 million people across the world and it means that, of a total DALY count, it is about 7%. If you look at years of lived‑with disability, it is actually much greater; it is actually 22.9% attributable to mental disorders. To take one condition, depression is the second‑biggest contributor towards disability across the world as a whole. Indeed, every day about 3,000 people commit suicide. Given the scale of that challenge, how far are we responding? Virtually not at all in global terms. In low‑income countries, about 0.5% of health budgets are spent on people with mental illness. In middle‑income countries, about 2%. The net result is what the World Health Organization described as “the mental health gap”, namely the distance between the need and the provision. The gap is across low‑ and middle‑income countries 90%. That means only about one in 10 people with mental illness actually get any treatment and, in some countries, as shown by data from Nigeria, only 2% of people with mental illness get any treatment at all. Mental illness has a huge way to go, in terms of people disabled by mental illness, bearing in mind that many have comorbid physical disabilities or physical illnesses at the same time.

Chair

In addition to that, David Cameron specifically identified dementia and said that he wanted this to be put at the heart of the future development agenda. It is a major problem everywhere. I suspect it is as much of if not a bigger problem in developing countries and possibly gets even lower priority. Does what you have just said apply to that or are there specific things for dementia?

Professor Thornicroft

At least as much so. Estimates are that the number of people across the world who are aged 60 years or over, from 2010 to 2050, will increase by 224%. That means an increase from 490 million to 1.59 billion people, among whom in that ageing population we will have increasing numbers of people with dementia, and they have their disability needs as well as their family members, so that is absolutely correct.

Chris White

My question is to Dr Shakespeare. At the WHO you worked to bring disability much more into their programmes. This might seem a strange question, but did you ever encounter something that was important but not cost‑effective? How did you respond to such arguments?

Dr Shakespeare

Yes. I went round and spoke to as many of the Directors of WHO as I could. I was working for the task force on disability, which was set up by the Director General for this purpose: to include disability and cross‑cutting in all of the programmes. The question that most directors asked me straight away was: “How many people? Why should I care?” They did not mean that because they were unkind; they meant that because they were fighting to meet all the different priorities they had at their disposal. Too often, I did not have enough data to persuade them that it was important. Yes, at WHO level, for example, you are dealing with the major common diseases, the major causes of death. For example, when I was previously an academic I was very interested in genetics in prenatal diagnosis and all the rest of it. That is not important at WHO, because these are vanishingly rare conditions. So many babies are dying of diarrhoeal infection and pneumonia, and so forth, so the idea of cystic fibrosis, muscular dystrophy or whatever I was interested in was not pertaining. Ironically, as countries rise up the development spectre, and fewer and fewer babies are dying of those preventable conditions, so the burden of genetic disease might increase and they will begin to have to deal with these questions. Of course, as you were highlighting previously in your questioning, there are matters of priorities. You cannot do everything. Just to take one statistic, I want to stress the importance of rehabilitation, for example. We want to prevent people getting injured from landmines, from road traffic injury or whatever else it is but, when they are injured, and inevitably they will be injured, we want them to get back on their feet, get the wheelchair they need, get the artificial limb they need and become productive again, which they can and do when they get that access. In a high‑income country, there is something like 14 or 15 rehabilitation therapists per 10,000. In a middle‑income country, it is four. In a low‑income country, it is less than one. There are many, for example, African countries where there is one occupational therapist for the whole country; one physiotherapist for the whole country. To up‑skill and to train mid‑level therapists to get very basic remedies to people to enable them to be productive is a good investment. It is not aiming for the moon; it is aiming for very everyday solutions to very common problems.

Chris White

Thank you. Do you think that, if you were able to gather better data, your and others’ arguments would be made stronger?

Dr Shakespeare

Yes and no. I think that everybody who has given evidence today would say, “We do not know enough; we need better evidence,” and so forth, but we do know enough to know what is not there. We do know enough to know what we need to do. It is often the case that people wait and say, “Let’s invest in an expensive survey” or “Let’s do some more research.” We can start. We can make a good start and we should evaluate what we do to see what its impact is. It stands to reason we should not invest in things that are not giving us bang for our buck and not giving us a return. We should rigorously evaluate what we are trying to do. We know what the problems are; there is no doubt that we know what the problems are, but we do not know what all the solutions are. If you look to the World report on disability, the conclusions, the recommendations of that, were very broad. We would have loved to have said, “Exactly do this. Exactly do that.” We could not; we lacked the information. I mean, we do have the information about certain things—of course we do—but, in general, the only way we are going to get that information is to try it, to evaluate it rigorously and to make decisions on the basis of that experience.

Hugh Bayley

I think it is important to base policy on data, but not to keep reinventing the wheel. 20 years ago, I wrote a proposal to create NICE. The idea was not just to exclude expensive and ineffective treatments, but to guarantee to the public that 90% of their health needs would be met. If you were looking at medication in a developing country, you would probably build a stock national formulary of 200 medicines, rather than the 900 you would have in the UK. Do you think the WHO could do a useful job listing a series of health interventions across the board that includes interventions to cope with disability that are cost‑effective? I would like to ask Dr Shakespeare and, perhaps in the mental health field, Professor Thornicroft.

Dr Shakespeare

I am bowing to my colleagues who have greater knowledge, but I do know from WHO that there is an essential medicines list and an essential health technologies list.

Hugh Bayley

I did not make myself clear. Should we go beyond that and have an approved therapies list, which may or may not be medicinal interventions?

Dr Shakespeare

Yes. I think we should expand our idea of essential medicines and essential technologies to include essential therapies. Yes, I do, but the evidence on rehabilitation is very poor. As everybody who is involved in medicine knows, it is the poor relation of medicine, even poorer than psychiatry, I think. We do need more research on exactly what works most effectively.

Professor Groce

We need to think of more information and data as a process. The more we do, the more we get out there, the more information we collect, the more informed we can be. The first example I know of of a global body trying to get data on disability was a petition for a centre on disability statistics that came before the League of Nations in 1931. They did not actually get around to doing anything, but that could be said for a lot of things related to disability; on paper it looks much better than it is in practice. We cannot wait until we get more data to begin acting now. We know what many of the key issues are. As we start crafting services, as we start including disability in development, we need to set up mechanisms such that we continue to bring in information while we are crafting these interventions, such that we become increasingly well informed and we see what does and does not work. Waiting to get the perfect list is going to be an excuse for inaction that is not warranted.

Professor Thornicroft

The head of the Mental Health Division at WHO Geneva is called Dr Shekhar Saxena. A couple of years ago, he and I led a committee to do exactly what you have just mentioned, which are the NICE equivalents. It is now published; it is called the Mental Health Gap Intervention Guide. This is now being translated into about a dozen languages and adapted for about 25 countries worldwide. It is intended precisely not for specialist mental health staff but for primary care stuff, nurses, healthcare assistants, community health workers and other doctors in low‑income and middle‑income countries, based upon all the best international evidence that is relevant to those settings, taking into account the health economic data as well as the outcomes. A lot of it is very basic, not just pharmacological but psychological and social interventions as well, in terms of what is possible, in a few minutes, for example among 400 people queuing at a primary care centre in Pakistan. It is exactly as you have said.

Chair

I take it that is a copy for the Committee.

Professor Thornicroft

Yes, it is.

Fiona O’Donnell

We are at the stage where we have the broad intention to include everyone. Dr Shakespeare, you spoke about the need for rigorous evaluation of the steps we were taking, but some experts have suggested that moving forward we should focus on a couple of sectors. First of all, do you think that is an idea? Would you make health one of those sectors or do you think that, possibly, by just focusing on a couple of sectors you miss out the link between nutrition, health, employment and training? Maybe by starting with one sector like education, a child may then through their teacher access health and is more likely to access employment because they have had education. It is a quite long question, but I thought I would just do the whole question and it would save people coming back in. Also, some of our written submissions suggested that DFID has given too much emphasis to advocacy. Dr Shakespeare, again you talked about getting people practical aids so that they can get on with their lives and start being included, so do you think the balance has been wrong between advocacy and practical interventions? Finally, in all of this, where are people with disabilities? Are they being asked this question at any point or are very clever people in the room making these decisions for them?

Dr Shakespeare

I do not need to start, but I am nearest to you, so I will. To start with where you finished, we should talk to people with disabilities in southern countries, wherever we can and as far as we can, to get their feedback on what is a priority. If you are asking me what is a priority for DFID in disability and development, I could put it back and say, “Let’s go out and ask. Let’s see what folks are wanting.” That is the first point. The second point is that, if you see different agencies around the world, they do focus on different areas and I think that is right, because they have their understanding of priorities. We have in Britain particular skills and offers that we can make to the world, from our own experience nationally, and presumably DFID would then develop a particular strength, say in education, say in employment, say in health, which it can bring to the global table. When I was at WHO, I was very sad that in a lot of the multilateral gatherings, the conferences, state parties to the convention and all of these things, there was no DFID at the table, and I know that DFID has huge strengths to bring to the conversation about disability, maybe from other areas of DFID work, like governance, economics or whatever. Bring that strength to disability and focus on that. If we need to know what it is that we do, we should look at what other bilaterals are doing, what our strengths are, what our track record is and specialise. I know from a disability rights perspective that to speak continually about health disturbs people because, rightly, they say disability is a multi‑dimensional issue, from education, employment and all the rest of it. Having said that, if you cannot survive, you cannot enjoy your other rights, so we have to have that balance, not put all our eggs in one basket, but take maybe two or three things to major in.

Professor Groce

Just echoing what Tom says, it does not have to be an either/or situation. We do not ask that of things like women or children. We are not saying, “We either specialise or we go broadly.” I think that disability needs to be a component in everything that DFID does, but there are arenas. I believe last week Lorraine made an excellent point when she said, “Pick what the strengths are and use them as the way going forward, so really concentrate.” However, it does not have to be either/or. I should also note that, AusAID is held as an example and they do very good work, but there is not a lot of pre‑eminence in this field. With not that much—I would say “not that much effort”—but with a commitment on DFID’s part, DFID could quickly become the leader or as much a leader in the field as AusAID.

Chair

You are saying we are a role model because everybody else is too far behind.

Professor Groce

There are several reasons. Certainly, it is not a highly competitive field. You could quickly take leadership and be a role model by showing a commitment to inclusion, and that means, among other things that were mentioned in the previous session, it is very important to hold people accountable. It has to be part of monitoring and evaluation, as you do with gender. You never set up an agricultural programme, put in a transportation system or set up a school system without asking how girls are included or how women are included. In the same way, there should be accountability at the end of the day where you say, just as to anybody you fund, “Give us the specifics of how you have included people with disabilities in this.” On top of that, you can have pre‑eminence in the field by selecting what you are already good at and using it as a framework within which to put disability to show how disability can really be significantly increased, often by just building on what is already there in good programming.

Fiona O’Donnell

You said in our approach to gender we will just do one thing for women. Very much the emphasis has been on education for girls. That improves their health because they do not end up getting married so young and having so many children. They are more likely to get independent employment and escape poverty. Is it similar? Do you have a priority for disability? Is there a vision of that in the same way? Is it health because of what you say—that if you do not survive the first few years—?

Dr Shakespeare

I am going to get another crack at this then. Personally from where I am coming from, I would say rehabilitation. Disability education is vitally important. There is very good work going on about it but, remember, disabled children are something like 5% of each age group. When you are getting into the older age groups, it is 10% probably of working age people and obviously up to 15% or more of older people. If we want to help people, it may be, given what other people are doing, that we could make a really good contribution in terms of rehabilitation and getting people into productive work.

Professor Thornicroft

Could I perhaps pick up your participation point please? I am working with colleagues in six Asian and sub‑Saharan African countries in a project funded by the European Union called EMERALD, part of which is strengthening mental health systems, for example through greater participation of people with mental‑illness‑related disabilities. There are huge variations. Across Uganda, there are about 17,000 people with mental illness disabilities actively involved in advocacy groups. In Ethiopia, there is virtually nothing, nobody involved, because it has just not been organised so far. DFID here might helpfully take a steer from the Department of Health in this country. I will tell you why. A couple of years ago, under the leadership of Dame Professor Sally Davies, now CMO, they did a wonderful thing in applications for funding from the National Institute of Health Research. They put in a box and they said, “Tell us the contributions to this bid by service users,” meaning patients—people with mental illness. The second box said, “If none, why not?” This has transformed the field, because now it is mainstream business for people like me bidding for grants to do mental health research—to have to talk meaningfully to people with the actual condition and for them to be partners in the bid. Basically, you do not get the grant if there is no real partnership—not tokenistic but substantial. DFID might helpfully have something parallel saying, “What partnership arrangements have you made with disabled people in this proposal. If not, why not?”

Professor Groce

Could I add just one more thing? We have been talking about individual level here, but it is important to think on a number of different levels. If there is a large grant going to a country to set up a new transportation system and you are paying for buses that are not disability‑accessible, you have missed a trick. It is not just the individual. It is easy to focus on the individual, but you should also be thinking in terms of systems—communication systems, new transportation systems. You put a lot of funding into that. It is just a tick box as people are applying or countries are applying: “Tell us exactly how people with disabilities and different types of disabilities are considered and will be full participants and full beneficiaries of this programme.” That would be a major step forward and it is not being done.

Jeremy Lefroy

Good morning. We have referred already to the fact that, in some cases, people with mental health conditions are particularly prone to stigma and marginalisation. How far do you think that some disabilities may be more marginalised than others in international development programmes and perhaps more generally? Perhaps you could suggest how that balance could be redressed.

Professor Thornicroft

It might be invidious to compare, but I could give you some perhaps helpful statistics. Recently working with colleagues in 41 countries around the world, we have carried out research on the extent of stigma discrimination against people with mental illness. We know that 95% of people with schizophrenia in many countries do report being discriminated against. We know that for about 90% of people with depression. This has a number of implications. It means exclusion from the job market. It often means exclusion from marital prospects. It can have knock‑on for family members, who may also be tainted by association and have their marital prospects harmed, but it also means that people who understand the discrimination, which is actually endemic in all our communities, may actively seek not to go for help, because they really do not want to gain a reputation of a diagnosis of mental illness. I recently visited a low‑income country where many people go to see a neurologist if they are depressed, not a psychiatrist, for example. In fact, I recently heard about colleagues in China where community mental health team staff prefer to talk to patients by telephone, not to visit them at home or in the clinic, for fear of direct proximity. We have a major problem here. We do have a commitment from the World Health Organization in their new Global Action Programme to tackle this, and we have some emerging evidence about how to do it, which is actually using people disabled by mental illness as the active change agents through social contact. That means by getting close, teaching for example primary care staff, working with policymakers. That is the best known active ingredient to reduce stigma, with the participants as the consumers.

Professor Groce

It depends on the country and the programme, as people with different types of disabilities face different types of marginalisation or stigma, depending on what the project is and what the programme is. People with intellectual disabilities, for example, are often not included in outreach efforts around issues like family planning, although they are as much in need as anyone else of family planning information. It really will depend on the type of disability and how the people who are running the programme, either through DFID or at a local or national level, conceptualise disability, which also goes back to discussions earlier this morning and some of what Tom says. The issue is that we often view administrators, decision-makers and policymakers, both at DFID’s level and at the national level, as kind of a black box: “We do not have opinions; we are just looking at it as professionals.” In fact, we also need to question the amount of knowledge, training and insight that people who are making these decisions have within the system themselves and to better educate DFID staff at all levels and also people in-country at all levels, who will get the funding, about the complexities of disability. It is not rocket science; it is understandable, but we need to do a much better job of ensuring that the burden is just not on people with disabilities or disabled people’s organisations that have to come and explain themselves. We need to think about this as a fairly nuanced issue. If it was easily solvable, we would have solved it already. The question is how to unpack and disaggregate some of this information such that we can promote and fund, and then provide monitoring and oversight, for effective policy and programmes.

Dr Shakespeare

We talked about WASH in the last session. For people who have faecal or urinary incontinence, or who have not but cannot get to the toilet and are left are in their own faeces or urine, there is obviously a lot of stigma and a lot of negative consequences from that for their whole social participation, and for women with fistula for example also. These groups face particular stigma. Stigma translates into something else sometimes, which is violence. You need to understand violence against disabled people, including people with mental health conditions, as a really important priority, both domestically but also globally. We did systematic reviews for The Lancet. People with disabilities had a 50% higher experience of violence in the past year. People with mental health conditions had a three times higher experience of violence in the past year. Children had three times higher rates of violence in their lifetimes, so there are some real issues there that we have not begun adequately to consider and face. A lot of that comes out of stigma and these negative attitudes.

Jeremy Lefroy

I return to the question that I posed to the last panel, which is the importance of engaging with representatives, particularly parliamentarians, and seeing this as not just a matter where DFID has to sort itself out, or the World Health Organization, the Global Fund or these other multilateral organisations and bilateral organisations. It is a question of parliamentarians and civil society governments in the countries in which we are operating taking responsibility and showing leadership against the stigma and discrimination that occurs, not just to the extent of passing laws, which as we have said we can all do, but actually showing leadership in their communities in support of disabled people. Perhaps you would like to comment on that and whether you have seen some good examples of that in your work.

Dr Shakespeare

On taking a leadership position, we launched the World report on disability. It has now been launched in something like 50 different countries, and I was at various of those launches. It was very encouraging to see governments. To single out one, obviously not a low‑income country, Turkey for example has really prioritised disability. It has been one of the themes of their work, and that makes a difference. When the big man says disabled people are important, people jump into line and listen a bit more closely. You are absolutely right. Graham can talk about the Prime Minister of Norway, who came out, as it were, as having had depression. When people say, “Yes, my brother is disabled. My son is disabled. I have had a mental health condition,” or whatever, it brings it out of the shadows and it helps destigmatise it, because universally disability is associated with being rubbish. When leaders in society show that they are also, both in their families and in their own selves, affected by disability or that they know how you should better deal with disabled people, that is very important. I also say that—obviously you are not denying this—at the grassroots something like a CBR programme, community‑based rehabilitation, which is really about community development and social inclusion, may not actually need to spend very much money to be there, to bring disabled people to the village meeting, to bring disabled women out from the huts to actually participate, and to make sure that parents care for their children with spina bifida. There is a great study by Warf et al. from Uganda comparing districts that had a CBR programme with districts that did not. Where there was no CBR programme, children with spina bifida died at twice the rate of other non‑disabled children. Where there was a CBR programme, they had the same mortality as other children. That is not because CBR brought great healthcare; it was because it prioritised attention to, care for and inclusion of these kids. Both at the top and at the grassroots, we need to have this change of attitudes in society.

Mr McCann

Can I just ask a quick question on that? We have recently returned from Burma and we visited a displaced person’s camp, which was related to the violence between Christians and Muslims in the country. We are meeting the Minister later this week. Hugh and I were walking around one of the camps and there was a young man who was mentally disabled, and he was tied, handcuff‑style with string, to a piece of root on the ground. We asked his mother what was going on and it was to prevent him hurting himself. In terms of practical intervention, in terms of DFID’s operations in that country, if we had a mainstreaming of disability issues in terms of a development programme, what action would you propose to deal with that practical grassroots problem that we identified? Quite frankly, I was pretty heartbroken walking away from that situation knowing that we were leaving a young man, without even giving any advice or help to that family in terms of how they could deal with those particular difficulties.

Dr Shakespeare

Graham can speak to mhGAP, which has a component about intellectual disability. CBR programmes work in the area of intellectual disability. A lot of parents of disabled children, whether it cerebral palsy, Down’s syndrome or whatever it is, are stigmatised and they just do not know what to do. Like in Britain, it is meeting other parents, having that mutual support, or having a self‑help group so that the mother is not alone—and perhaps a number of mothers can take it in turn to care for their children and so forth and so on—and can learn better how perhaps to educate him or to help him with his self‑care needs or whatever else it is; it is mutual help and mutual support. There are no extensive services, but there are options when communities understand that they can make a difference to these kids and it is not just a matter of leaving them to die.

Professor Thornicroft

Could I respond to that point in particular, please? A similar example is from when I visited a place in south-eastern Nigeria called Enugu province. I was shown a man who had thick scars from having been shackled for many years; he was a young man with a psychotic disorder. In this place, a charity, an NGO called CBM, had put in place something called a community health worker, who had gone to his village and said, “Do you realise just a mile away is a primary care centre where you can get assessment and treatment?” They did not know that, so they took him there and he was given antipsychotic medication. He improved a lot and now he is helping the family by working in the fields. Similar projects are run by BasicNeeds, by GIP and by a series of other NGOs in the field, so you can do a lot in terms of the reduction of human rights violations—chaining and caging and so on—just by connecting people if basic services are available. Can I answer the parliamentarian question as well? In the mental health field, it is relatively straightforward to engage senior officials in ministries of health. For example, I am working with colleagues at the moment in Ethiopia, India, Nepal, South Africa and Uganda in a programme that is actually DFID‑funded. It is called PRIME. We have the senior ministry officials responsible for mental health in countries directly on the steering committee coming to meetings, talking about policy change. Actually involving parliamentarians is a separate question. In this respect, we are probably in the lead in this country in the world at the moment. You will know from the Health and Social Care Bill recently, when we had these six colleagues speaking out actively about this, that was a tremendous step forward. We know that, on average, a quarter of parliamentarians will have a mental illness like everybody else but, as Tom mentioned, there is only one really prominent example in the world of this, who was the Prime Minister of Norway, Kjell Bondevik, who had a period of depression while he was prime minister, got treatment, spoke openly about it, came back in 2000 and was re‑elected. Certainly, in low‑ and middle‑income countries it would be seen as political death to be open about having a mental health disability in a politician, let alone in a minister.

Professor Groce

Could I just follow up on that parliamentary question as well? In my experience, we have worked in about 15 countries, primarily in Africa, over the past four years and certainly, repeatedly, I come across parliamentarians who are very involved and have very strong links often with the local disabled people’s organisations. They understand. They themselves may be disabled; they may have disabled members of their families. They have often been taking real leadership, so it is not an absence. It is often a lack of connection within the parliamentary systems that they work in. I do not know of many parliamentarians who have been active in specific countries who connect regionally or internationally with other parliamentarians interested in this. It would be great if there was some sort of international way that parliamentarians themselves who are passionate about this and who have a history and often great experience could share their expertise and their insights. I do not know of anything where there has been this cross‑national approach, but if one of you would like to, in your spare time, take the lead, there is a great deal of experience among parliamentarians on disability that is not being mined.

Fabian Hamilton

Can I suggest a former Member of this Committee and a former Member of Parliament who took up these issues, John Battle, who used to be the MP for West Leeds and is now retired? He has got a little bit more time, but he is an absolute expert on this and he was on this Committee for two terms, I think. He would be somebody you should contact and I can put you in touch with him. Picking up what Professor Thornicroft said earlier about parliamentarians, a watershed moment, as you rightly said, in this place was when we had that debate on mental health and a number of MPs stood up and said, “I have had mental health problems.” I thought it was very brave of them, but it was a watershed moment about the stigma attached to mental health issues, as we have all been discussing. I am glad also, Dr Shakespeare, you mentioned Turkey and the approach that they have had. I have an involvement as Chair of the All‑Party Group for Turkey. I go there regularly and I see the progress they are making. There are lots of criticisms maybe of what is happening there, but this is one area where they are really showing the rest of the world what can be done in a middle‑income country. I wanted to just continue the discussion about the stigma attached to people with mental health conditions and ask what you think can be done about the fact that so many are excluded from the disability movement itself. How can we actually counter that? Yes, we can show by example, but what can be done to make sure that those people are not stigmatised by the very movement that tries to help disabled persons?

Professor Thornicroft

I feel like a bit of a late arrival at the ball here. You will know that, a couple of years ago at the United Nations high‑level meeting on non‑communicable diseases, mental health was essentially absent. You will know that from the Millennium Development Goals, mental health is essentially absent, so it is only recently that we have actually been making the case strongly enough to be invited, for example, to meetings like this. We have now been included in the United Nations Statement ‘A Life of Dignity for All’, which includes an explicit reference to mental illness. There is now a WHO General Assembly Resolution this year, which supports a new global mental health action plan. The case is now being made increasingly, but the major difficulty of the challenge is the investment in mental health resource on the ground. As I mentioned, 0.5% on average in low‑income countries of the health budget goes towards mental health. It is clear systemic or structural discrimination before your very eyes. What can you do? One clear thing is not to say we have to completely transform mental health services, because often in sub‑Saharan countries there is no psychiatrist—not one. The key is at a primary care level. For example, recently I heard about a nurse in a clinic in rural Ethiopia who did not want to touch the case notes of a person with mental illness in case he got contaminated by just touching the case record. That is the degree of stigma we are talking about, so it is a very substantial challenge for us, first of all to think about educating primary care staff to recognise and treat people with mental illness. Having a separate vertical programme in most countries just will not work; there is no political willingness to do that. A more helpful approach is an integrated one, where you teach people in primary care to look after people with non‑communicable and chronic disorders, mental and physical. Of course, a lot of people have both at the same time. A very good example of this is in South Africa. This mental health set of guidelines has now been incorporated into generic non‑communicable disease guidelines, called PC 101, led by Dr Fairall and colleagues, and Professor Lund, which is now being taught to all primary care staff across the whole country. That is a very helpful development.

Dr Shakespeare

Could I just respond to Mr Hamilton’s comment about the disability movement? Anybody who has spent time in the disability world knows that the disability movement is not perfect. It is in fact a lot better than many movements in its efforts to make itself inclusive and representative, but disabled people are like everybody else and, if they have not personally experienced mental health conditions themselves or in their family, they will be fearful; they will wish to avoid. They will perhaps feel that, if their group is involved with these people, the whole group will be marginalised, so we need to educate folks with and without disabilities. When we work with the disability movement as DFID, we should be holding it to account, in terms of not just whether you are including people with mental illness and intellectual disability, but also are you including women? Are you including the poorest of the poor, the rural folk and all the rest of it? The disability movement rightly challenges DFID, and DFID in its own way also needs to ask questions of the disability movement to ensure that it maintains that representativeness, because disability is hugely diverse. A large proportion of disabled people are older people, and it seems to me that older people are under‑represented in the movement. I heard you talking in your previous discussion about, as it were, the alliances, the partnership, the synergies between older people and disabled people; this is a no‑brainer—this has to be the way forward. We are living in an ageing world and this is a real win‑win. If we can make places accessible for older people, they are accessible for disabled people. In terms of the International Disability Alliance, which is a global representative network of disabled people’s organisations, the World Network of Users and Survivors of Psychiatry is an honoured and valued member of that group. They have taken a leadership role in that group, so has Inclusion International, which is working with people with intellectual disability. At least formally, at the top level, those groups are at the table. You are right; in individual groups and wherever, there may be instances of prejudice, and we need to work with that or against that.

Professor Groce

It varies both by country and region, and often on a local basis as well. Again, there is a complexity to it but, just to re‑emphasise what Tom said, we should hold everyone to account for inclusion for all.

Hugh Bayley

I have two supplementary questions, not related. One follows the stigma discussion we had and the most extreme cases, where I believe a young man tied up, day after day, is a gross human rights abuse, but it was not seen that way in this camp. It was seen as a necessary response. I have seen some orphans who had been deemed child witches in the Congo being rehabilitated. The question is: amongst the other tools that we should ask DFID to work on, should we be asking them to strengthen human rights law? That is the first question. The second question, Professor Thornicroft, is you say many sub‑Saharan countries have no psychiatrists at all. You have mentioned this case, I think you said in Nigeria, where antipsychotic drugs made a huge difference to somebody’s life. Can you give us two or three examples of—how can I put it?—affordable and cost‑effective mental health interventions, not necessarily drug therapies—Dr Shakespeare has been talking about community responses—that you would draw out of your best practice guide there? Just give us some examples. There are two different questions.

Dr Shakespeare

Shall I go first? As we are all well aware around this room, the Convention on the Rights of Persons with Disabilities, which so many countries have ratified, means that they have to revise their laws in line with that. It is very easy to ratify; you could see on the day that it was first tabled not everybody but a large number of people ratified it straight away. Of course, they are not complying. They were not then and they are not now. DFID working with countries to say, “Look, you have ratified; how are you going to revise your laws? How are you going to revise your practices? How are you going to meet your obligations?” is really important. If we are going to do that, people are going to turn around and say, “United Kingdom, what are you doing and how are you meeting it?” We have to be very careful. However, there are lots of things that we have succeeded in that we can begin to export. Transport came up earlier. I got an accessible taxi here today. I could have got an accessible bus. I know that there are limitations and problems, but Britain has shown that you can have an accessible transport system and we can help particularly low‑ and middle‑income countries get that right from our experience and, therefore, meet their human rights obligations. We can share our knowledge. We can support their parliaments and their policymakers to work out what it means and how it can be delivered, but we need to do so in humility, realising that, in our own domestic situation, when we come up before the Committee on the Rights of Persons with Disabilities, they will have lots of criticisms of us.

Professor Thornicroft

Do we need a new law? No. The CRPD is a good enough framework at the moment. What is the problem? We are not implementing it, so there is no practical monitoring. Section 33 does lay down requirements for monitoring, which many countries do not actually do. The right to health is included there, covering a whole range of the issues we are talking about today, but it is actually not put into practice. Many organisations, for example in my field one called the Global Initiative on Psychiatry, are doing work exactly on the intersection of human rights and mental illness, but this is not yet sufficiently developed to have purchase at country level with governments. The framework is there; it is the question of implementation. DFID may have a role to play in developing that. On your second point about examples, we do have some. The key concept here is called task sharing so, if you do not have doctors, you cannot wait till the doctor prescribes; you give those responsibilities to nurses. If you do not have any nurses, you create a new cadre of people called community health workers, for example, and they do the basic interventions. Recently that has been tried, led by my colleague Professor Patel in India, for people with depression. We have shown that community health worker interventions for people with depression in the community are cost‑effective. Also working with him, I have led recently a trial called COPSI of people with schizophrenia in India. We are about to publish the data in The Lancet.

Hugh Bayley

What are one or two examples of the typical interventions?

Professor Thornicroft

They are a mixture of getting simple cheap medications to people, psychoeducation, which is telling the person concerned the nature of the issues, the outlook about their participation in the workforce and so on, but also supporting the family. These people of course are living with their families, and it is about helpful ways for the family to interact with the person. The expectations are set, not excluding them from the workforce, working on the farm or whatever it might be, but including them in the recovery pathway. It is a mixture of basic psychological, basic social and basic pharmacological interventions. You can deliver those in low‑income settings. You can show that they are cost‑effective, but what we have not yet done is actually scale that up across whole regions and whole countries.

Professor Groce

To add to that, in addition to allied health professionals or community health workers that can get skills like psychiatry or psychology, many countries have few or no speech therapists, audiologists or the basic allied health professionals, who translate often or can deliver direct services. Probably for the vast majority of interventions you do not need a physician. It would be nice to have one in some cases but, often, to get out there and provide most of the services, if we teach people and include people with the basic community health skills to acquire skills that have something to do with disability or can serve the disabled communities, we can immediately have effect in many of the most resource‑poor areas. We are simply not doing that. People who are trained as nurses, midwives or any number of other mid‑level health professionals or community‑based professionals receive no information about disability. Often if you talk to them, they will say, “Well, I don’t have these skills.” In fact, what they do and what we fund in terms of good basic community health services can address, I would say, the vast majority of the issues or at least the initial major blocks to fuller participation and richer, fuller and healthier lives for the people with disabilities who we deal with in developing countries. It is a low‑cost, low‑tech issue. We need more awareness and commitment, and to build it into general healthcare systems right now.

Dr Shakespeare

I was just struck by the story of the pregnant lady who was a wheelchair user, who turned up to the hospital in a West African country. Before they admitted her, all of the staff stood around and laughed at her and said, “How did you get pregnant? Ha, ha, ha.” It is about the supply, but it is also about the human rights emphasis to understand that disabled people have sex, have babies, have arthritis, have cancer. Everything that everybody else does, disabled people do. Health workers are the first people who should realise that, and yet that is not the case. I did a paper last year about what we know works to train health professionals to be inclusive of disabled people. We still need to do more of that. In this country, we have very good medical schools, as they do in other countries, but we are prioritising in our medical schools ensuring that students understand disability and that disabled people will present as pregnant, as wanting cancer screening or whatever else it is. Perhaps we can share some of that when we support medical schools in developing countries.

Mr McCann

Chair, I know we are running out of time, so I will get straight to the point. What are the main benefits or risks with community‑based approaches to rehabilitation and mental health care?

Professor Thornicroft

The benefits are you can actually reach a great proportion of the population if you have locally based care. The big problem with mental health is access in that, in many countries, 10% or fewer people are actually getting any treatment at all. Part of it is geographical access. You can actually get out and disperse services and make them available; if the government will invest in them, you can have basic skills on the ground. The risks are that usually mental health is seen as the Cinderella; they are seen as low‑tech and less of a priority. Unless you have ongoing funding, you have this invidious situation of short‑term external‑funded three‑year programmes. It is quite a good service, but stops. Another one starts and then stops. You get discontinuity, disillusionment, staff going abroad and so on, so you do not get a platform you can build with, sustain and grow over time.

Professor Groce

Can I just build on that? The benefits far outweigh the risks, and the benefits are you reach many more people and many more individuals and their families if you do this. The risk I see, to echo what was just said, is often when these services are put in at all, either for mental health, for people with disabilities or for rehabilitation, they are done as pilot projects. It is not built into the sustainable fabric of a community health centre or a community ongoing policy or programme, so you get funding for a year or two years. This is true not only for health, by the way, but for just about anything I can think of about water and sanitation, transportation or anything that has to do with people with disabilities coming through development, not just DFID, but USAID and AusAID. Often they are done as pilot projects and everybody feels great about it. You reach 20, 30, 200 or 300 people, and then it is over, so it needs to be knitted into the ongoing fabric and commitment, because it is both a right and because the term could be “enlightened self‑interest”. If you do not do it, then the downside, the risk, is that these people will not be served, and their lives and the lives of their families will be the poorer for it.

Dr Shakespeare

I agree with all that. The thing about, say, community psychiatry or rehabilitation is that it is a long‑term, complex—not “complex” difficult, but multi‑faceted—set of interventions. The risk is that it is not visible. It does not cure people. Well, it can, but largely it is not like, for example, vaccination or mine clearance, or these best buys for development actors, where they go, “Right, I’ve built that shiny hospital. I’ve inoculated all those children. We’ve eliminated polio from India.” Those are great; they look good for everybody and you get a lot of kudos for that. What we are talking about is much cheaper and will help as many people, but it is not visible so easily. It is with a section of the population who are not particularly valued or not valued at all and, also, because it is complex and long term, it is administratively complicated and there is scope for more corruption. Donors fight shy of that. They say, “Give us something easy. Give us something quick. Give us something that looks good and is a priority.” That is so much easier for them than the sorts of things that Graham, Nora and I know work and know reach tens of thousands of people.

Professor Groce

Could I just follow up on that? Let me give you the example of polio. Last year, worldwide, or in 2012, when we have the latest figures from, there was something like 223 people worldwide who got polio, give or take. In Syria there was an outbreak as well and then mass inoculations. We are very close to eliminating polio compared with, say, the late 1980s, 1987‑88, when 350,000 people per year got polio. We are down 99%. This year or next year we think that polio will, in fact, be eliminated. That is great, but 20 million people worldwide—20 million—live with some form of disability acquired by polio. Very soon, there are going to be parties all over the world to help people celebrate eliminating polio. The lives of those 20 million people are just as valuable and, unless we build them into ongoing services, they will be at a disadvantage for decades to come. Tom said it is good to have a shiny “we’ve eliminated polio”, but unless we really think critically about how to integrate people with disabilities into ongoing services, their lives will be the poorer for it and their communities will be the poorer for it. Quite frankly, all of us will be the poorer for it.

Chair

Perhaps it just brings us down to counting, measuring and collecting data. We have had slightly contradictory evidence. One says, if you do not have the data, you will not get policy to deal with it. Others say data not only costs money but implies that you have to spend money on the people you have acquired from that data. How do you ensure, first of all, that you get on with it while you are collecting the data and, secondly, that data collection does not get in the way? Indeed, governments actually say, “Let’s not count them, because that will just create a problem.”

Professor Thornicroft

Just to work that out, I have been looking closely at how colleagues in the HIV/AIDS field deal with this. Of course, they have got tremendous funding to support it, but they measure coverage. In each of the relevant recipient countries for the major donors, so it is Global Fund, PEPFAR and Gates, they can say the proportion of people who have HIV or have AIDS, per year, who are getting treated, and then they can compile a league table. They can see changes relative and absolutely. I know colleagues in ministries of health pay a lot of attention to their absolute numbers, but also their position in the league table. That follows the principle that, if you do not measure it, you cannot manage it. In mental health, we do not have those data yet, but I think they are transformative in shaping policy and investment, if you have the right light‑touch figures available.

Chair

DFID is very much focussed on targets and outcomes” “We have reached so many people; we have treated so many people.” First of all, is that the right approach? Does it actually deliver results? Is there not a danger that people will effectively fix the statistics by not identifying people or in some other way?

Professor Thornicroft

Just to follow on, it depends who wants the data. Does DFID want it or do the recipient countries want that and which numbers would they act upon? If you like, what is the minimum amount of information that could be gathered that would be truly informative to their investment decisions? Having said that, how do you validate it and make sure they are not sham data? Both are important.

Professor Groce

Just to follow on, we both collect data and we implement programmes for women, for example, or people in rural areas or people in slum communities. We do not make this distinction; in mainstream development terms, we do both, and we assume that we need to collect accurate data to better inform and target, over the course of programmes and policies, so it is not either/or. At a certain point, you probably have more data than you need, but we are far from that point. Even with something like AIDS, where there has been research and data collection for the last two decades, there is still a tremendous emphasis on learning and bringing into the fold new ideas and new approaches based on data. When we try to distinguish between the two, it is a false dichotomy. The more data that we get, as long as it is data asking good questions about on‑the‑ground issues, the more we can target, improve programming and policy, and monitor and evaluate what is going on. However, I do not think that should take away from action.

Dr Shakespeare

A lot of people talk about the Washington Group’s six questions. They are very useful, because they are quick and dirty disaggregation. When we are delivering services or when we are doing any work, we want to know what proportion of folks that are using this service are disabled, so things like those six questions do that quick, cheap and—I have to say—dirty. They measure people who have impairments, and what the disability movement says is, “Look, disability emerges from the inter‑relation of somebody with an impairment and their environment, and we historically have only measured people with impairment.” We have endless headcounts of people with an impairment, people with this, people with that. We should be looking at how many of the new buildings you are building are accessible; how many rehabilitation therapists you are providing; how many of your buses are accessible. When we are researching disability, do not just count disabled people; count disabling barriers. It is possible. We were involved in the World report on disability. I hope very much that WHO, at some point, will do a global status report on disability or maybe the UN system will do a global status report on disability. As Graham said, if you rank different countries to see how well they are doing and, say, Cambodia is doing less well than Thailand or some other neighbouring countries with similar levels of development have different outcomes, they will be spurred to improve. That is the benefit of the Committee on the Rights of Persons with Disabilities. That process has really driven change, not fast enough and not far enough, but people do not like to be named and shamed. They like to know that they are doing what is right. These are generally good people and good parliamentarians. They want to be praised, if we can measure what they are achieving and get comparable data. The WHO is doing a model disability survey, which is innovative, because it allows you to compare all sorts of people with issues of functioning to look at the role of environmental barriers. Historically, we have said, “We know who disabled people are. They are like an ethnic group or they are like women. They are a separate group.” They are not. Disability is a construct. We said they were 15% of the population. That was an intellectual decision, but it was also slightly a political decision. It is about trying to understand a meaningful figure. Actually, many countries say it is 2% or 3% and in Britain it is higher than 15%, and all the rest of it. It is what we make it. Many people do not want to identify as disabled. In Britain, only about 50% of people with what we might call disabilities identify as disabled people. I do not want to be a social scientist, deconstruct everything and tell you to do more theory, but I do want to say that there are people affected by disability. When we talk about disabled people, disabled people, disabled people, we may make the mistake of thinking that you can go into a community and go, “Right, they are disabled.” You cannot. You can generally say who is a woman and who is a man, but you cannot say who is a disabled person and who is not. What matters is how communities are responding to this challenge, the amount of health workers they have, the amount of accessible buses, the accessibility of their health systems and so forth. We can hold people to account on those figures.

Professor Groce

Maybe to just follow up quickly, many people do not identify as disabled but, even if they do not identify themselves as disabled—an older person with poor eyesight may not say, “I have a vision impairment”—that does not mean they will not benefit from the services that you put in place.

Jeremy Lefroy

Turning now to research programmes, DFID has several disability research programmes and is quite strong on research in a number of areas. One of the questions we always ask is whether this is put into action and what your experience is of the research being put into action, not just with DFID but perhaps more broadly.

Professor Thornicroft

I am involved in a DFID‑funded project, which is called PRIME, and this is across five countries in Asia and Africa. This has shown tremendous and really positive support from DFID, both in respect to the research and in capacity‑building. An explicit part of this is to develop younger investigators in those countries, who will go on in the future to lead research and then provide evidence to their own governments, in turn. It is deliberately a type of knowledge‑transfer exercise, and DFID has been tremendously supportive, so I can speak very highly of that example.

Professor Groce

We have just completed a DFID‑funded project on cross‑cutting disability and development. We are not quite as far down the road as you folks are, because we are just now coming out with the findings, but we have found that DFID, in the research capacity, has been very helpful and very responsive. The question is how much of what we bring in as research is transferred to the other components of DFID, and some areas of DFID have been more interested and responsive than others. Again, the issue is leadership from the top. If there is interest at the top and senior DFID officials are including more of this and integrating the research findings in DFID programming, that will make a major difference. Could I say one more thing?

Chair

We are running up against colleagues with other engagements, but we just have a couple of more questions.

Professor Groce

Could I say also the interest in integrating disability is important for DFID not only at headquarters levels, but at national levels with in‑country programmes. Again, it was mentioned in the previous session. Some DFID offices are very interested; some are not. It is the luck of the draw. Sometimes you will be working in a country where there will be a local DFID person who is great and very interested in disability, and sometimes you will be working in some place where the DFID person may be great, but they are not interested in disability. It becomes optional on some levels whether they are interested or not. I would think that one step forward would be more emphasis, not just from London, but also throughout the DFID system, to ensure that this is a priority, because otherwise you are left with an individual often with not well-informed opinions of disability. In some cases, it almost feels charitable: “We’ll get around to disabled people once we address other issues.” That is like saying, “We’d love to vaccinate all the children in the village, but we only have enough vaccine for the boys. We’ll get to the girls as soon as more vaccine shows up.” You cannot do that. People with disability have the same rights and, for that reason, it is important that this be, both at headquarters level and at national level, an issue that is really taken up and championed.

Chair

We are working on the assumption that, if DFID has a commitment, that has to be part of the challenge that they are going to take up. We will engage more on that.

Hugh Bayley

Finally, I would like to put to you the final question put to the last session, which is that we are on that continuum between saying, on the one hand, leave no one behind and, on the other hand, let us have a disability and development policy; would you like to see our report coming down? Dr Shakespeare, you talked about the benefits you could get from building an ageing and disability synergy. You talk about the conceptual difficulty of numbering or categorising who is disabled. 20 years ago, “health for all” was the slogan from the WHO, wasn’t it?

Dr Shakespeare

DFID invented it; it is the twin‑track strategy. We have to do both. We have to look at DFID’s portfolio of work and make sure that it is inclusive of disabled people. There are some small things that could be done, things like physical accessibility of buildings, like they have done with schools. That is fantastic. In the business case, just have a question, so all business cases have to ask, “How has it included disabled people?” There is the information accessibility and these sorts of basic cross‑cutting things. It is not elaborate; it is not rocket science to get that right. Then of course some targeted work is needed to understand the specific issues that face disabled people. As to the balance between the two, if you have your mainstream funding accessible to disabled people and fully inclusive to disabled people, that has to be the biggest change that we could possibly make, but that cannot be at the expense of forgetting that there are some specific needs that DFID is in a position to help countries meet better, like wheelchair provision. I have a wonderful wheelchair provided by my wheelchair service. I have no complaints about that. Only 15% of the people in the world who need wheelchairs have the wheelchairs that they need. Thanks to Chinese manufacturing, you can buy a wheelchair for less than $150. A wheelchair should be like a bicycle and there are bicycles everywhere in developing countries, across Africa, Asia or whatever it is. A wheelchair is not much more complicated than a bicycle. It need not be more expensive. Things like that would make a huge difference to people, so targeted and inclusive.

Professor Groce

I would just echo what Tom said. I cannot emphasise enough, before I came to the UK, for example, how everybody uses a twin‑track approach. DFID is already famous in the field for the twin‑track approach, which is disability‑inclusive and disability‑specific. You might as well build on something you are already lauded for around the world, in terms of how you position yourselves. You need maybe to reflect on your pre‑eminence in the field and put the funding in to back the pre‑eminence that you have had for many years.

Dr Shakespeare

Sorry to interrupt and to add, with DFID as a champion, the taskforce on disability worked at WHO because it had a high‑level champion and it had a low‑level agitator, which was me, and obviously representation from different sections. You need to push away at it. Having a policy to be inclusive does not work. Having a champion and having some people pushing away at it will help.

Professor Groce

It is a process.

Hugh Bayley

Who would you choose as a champion?

Dr Shakespeare

We already have Lynne Featherstone and that is wonderful. I do not understand sufficiently the structure of DFID but, in WHO, we had an Assistant Director General, so that is right, as you know, under the Director General. He chaired the meetings of the task force. When I went to have a meeting with a Director or somebody else, or the Regional Director or whatever, I would say, “My boss is Dr Ala Alwan. He is the ADG and he said … and his boss is the DG and she said...” Of course, in a civil service‑type structure, we will meet you and we will do something, because you are going to report back.

Hugh Bayley

It needs to be a minister or a director.

Chair

Ministers come and go. That is the point.

Dr Shakespeare

Well, then a director.

Professor Groce

With seniority.

Professor Thornicroft

I have this image of bicycles with the twin‑track and wheelchairs making twin tracks. In terms of mental health, I think it is genuinely cross‑cutting. If you think about the post‑2015 shifts indicated, mental health intersects with all of those. In fact, not paying attention to mental health actually stops you from achieving all of them. For example, with regard to HIV, TB and malaria in the current MDGs, if you do not pay attention to the fact that people with those conditions are twice as likely to be depressed, and that they are therefore less likely to take their antiretroviral treatment—they are more likely to die—you are actually not going to hit your targets. Similarly, there are complex interactions between poverty and mental illness, so you have to look at both in the round.

Hugh Bayley

Can I ask one last question? I know you are going to clonk me. To what extent do you deal with mental health by improving housing and improving employability?

Professor Thornicroft

In a profound sense; those are etiological factors that cause mental illness in the first place.

Dr Shakespeare

And war.

Jeremy Lefroy

I chair the All‑Party Group on Malaria and Neglected Tropical Diseases. Now, these neglected tropical diseases are some of the main causes of disability, if you think about things like lymphatic filariasis and so on. There is again so much preventable disability amongst these. In your work, do you have any interaction with the work that is being done on NTDs?

Professor Groce

Yes.

Jeremy Lefroy

That is something that clearly, over the past few years, has come up the agenda but, by their very nature, they have been neglected.

Dr Shakespeare

You did say neglected tropical diseases, yes. Back when I was at WHO, I spent a lot of time going round. Some of these, like Chagas disease, Guinea worm and all the rest of it are associated with lifelong morbidity. What is interesting is, when we measure the impact of those, not just to look at mortality but also to look at morbidity.

Professor Groce

For example river blindness: in some communities everybody above the age of 40 has lost their vision because of river blindness. In those communities, it is not unusual for blindness to be considered a part of the ageing process. It is rethinking a lot of these, and then making provisions if people are affected and have a morbidity. We are not very good at doing that and sometimes we are not very good at bringing them into the disability efficacy fold either and, again, that is where the proper programming and community interventions could make an enormous difference.

Jeremy Lefroy

I have not seen, and it is a very interesting thing I need to look into, so much link between the work being done on NTDs, which has been very much focussed on the fact that this is a very cost‑effective way of treating the 1.2 billion to 1.4 billion people who are susceptible to them. It is often a matter of a dollar a year or less. I have not seen as much made as perhaps one would think of the link between that and disability.

Professor Groce

There could be more. I sit on a WHO committee on NTDs, for example. There could be a lot more, but it is an important area to explore.

Chair

You have seen the Committee has been engaged and this evidence session and the previous evidence session have pointed to quite a lot of very clear recommendations that we can make to DFID. If it wants to act upon them, they will put substance on to the objectives. From the conversation I have had with Lynne Featherstone, I am sure she is committed. She is as aware as anybody that ministers come and go, and she wants to ensure that the Department has a structure to take forward. There will be an election next year and we want to ensure that, if it is built in, it is built in regardless. That is really the objective. We thank you very much indeed. It has been really helpful. If you have any reflections afterwards on anything, where you think you want to add to what you said, amplify or qualify, please feel free to get in touch. Polly here will be happy to engage with you.

Professor Groce

Could I just thank you for holding these sessions? We really appreciate it.

Chair

I think we appreciate that this is an issue where the Committee can make a useful contribution. People like you giving us evidence is a really important part of that.

Dr Shakespeare

It is a very timely moment globally, with the post‑MDGs. This is exactly the time to push on this issue.

Chair

Let us hope it follows through. That certainly would be our objective. Thank you very much. Oral evidence: Disability and Development, HC 947-ii 4