Access to health care difficult for people with disabilities
20 February 2009 -- People with disabilities make up more than 10% of the world's population. In this episode we find out the challenges they face while trying to get health care services.
Transcript of the podcast
Veronica Riemer: You’re listening to the WHO podcast, and my name is Veronica Riemer. In this episode, we find out the challenges people with disabilities face while trying to get health care services.
People with disabilities make up more than 10% of the world's population. Too often though, they are unable to access healthcare services. This is not about just the physical access to buildings, but also access to services, information, care and support.
Liz Sayce is the Chief Executive of RADAR -- the Royal Association for Disability Rights -- in the United Kingdom. In her previous job at the UK Disability Rights Commission, she researched health inequalities experienced by people with disabilities. She talked to Tom Shakespeare from WHO's Department on Disability and Rehabilitation about the findings from the research.
Liz Sayce: We commissioned a university to look at eight million primary care records in order to indentify whether if you had, say, schizophrenia or bipolar disorder, you were more likely to have physical health problems like heart disease or cancer. Also whether you were likely to get the recommended treatments for those, and how long were you likely to live. We did qualitative interviews with all the players in the system, people using the services, people providing the services, relatives, advocacy organizations to get a really rich picture of what were the barriers that people were facing to accessing health promotion, health assessment, treatment and what were the areas of good practise and suggestions for change.
Tom Shakespeare: Great, that's what you did, but what did you find?
Liz Sayce: We found that people with long-term mental health problems or learning disabilities were more likely than other citizens to get some of the major killer diseases of our time, things like heart disease, stroke, diabetes, and some cancers. There were some completely new findings like people with schizophrenia were twice as likely to get bowel cancer as other citizens which hadn't been found anywhere before to our knowledge. We found that people were more likely to get these diseases at a young age and once they got them, more likely to die of them within five years.
Tom Shakespeare: We think that people with learning disabilities are more likely to suffer from things like obesity, lack of exercise and poor diet.
Liz Sayce: Yes, that's right. We found in relation to people with learning disabilities, that there were problems of obesity, lifestyle difficulties, but also there were some areas where we could see that the health services were not responding adequately. For example, there were much lower rates of cancer screening and poorer management of people with diabetes.
Tom Shakespeare: What needs to change? What can we do about this?
Liz Sayce: At a very practical level we made recommendations for primary care. Things like, if people have particular access requirements, they can record those, so that they don't have to explain them again and again.
Tom Shakespeare: By access requirements, you mean, for example, they may not understand or they may not be able to read because of visual impairment or they may be deaf? You mean producing information in different formats, is that right?
Liz Sayce: Yes, it is about producing information in different formats but it could also be, for example, somebody with a mental health difficulty or a learning disability who finds it difficult to remember when an appointment is, to turn up at the right time or maybe they get scared when they get there by waiting in a crowed room. We found good practice where receptionists had worked with people - said "OK, I could text you a reminder if that would help you." Or, "OK, you find it difficult to wait in the waiting room. You can wait somewhere else. Do you want to be in café next door, or in your car if you are driving, whatever, and we will ring you on your mobile when it is time for you to come through." Those things made a difference between people turning up or not turning up.
Tom Shakespeare: Presumably you are talking about a range of measures which aren't necessarily very expensive to implement, but can make a real difference to people's health.
Liz Sayce: We found that often health service providers understood disability access much more in terms of physical access which is very important, but a lot of the changes that we are talking about were simple changes in systems and behaviour.
And, for governments, we urge them to introduce regular health checks for people with learning disabilities. Also to give much stronger guidance and inspection as well on how health services were commissioning for these really at-risk groups.
Tom Shakespeare: So Liz, what you found in the UK, therefore, was health inequality, people not getting the services they needed, diagnostic overshadowing so that people were seen in terms of their disability not in terms of their general health needs. If that is the case in the UK, what do you think the situation, can we hypothesize, what that might be like worldwide?
Liz Sayce: We have a pretty good primary care service. But even in a country like the UK we are not getting the services right for people who are really excluded and at real risk of developing serious health conditions and dying young. If that's the case in the UK, the worry is that it could be at least as bad in countries that don't have the advantages of quite such a systemized national health service as Britain does. There's some international evidence that suggests, for example, people with long-term mental health problems do tend to die younger than others internationally. We think this is an issue of huge international concern and one that really needs to go up the policy agenda.
Tom Shakespeare: And absolutely in line with the Convention on the Rights of Persons with Disabilities. Liz, thank you very much.
Veronica Riemer: If you would like to learn more on this subject, look for the links on the transcript of this page of this podcast.
That's all for this episode of the WHO podcast. Thanks for listening. If you would like more information on this topic, you can find links on the transcript page of this episode.
If you have any comments on our podcast or have any suggestions for future health topics drop us a line. Our email address is Podcast@who.int.
For the World Health Organization, this is Veronica Riemer in Geneva.