‘Our Bodies, Our Rights’: Women with Learning Disabilities experiences of reproductive health and wellbeing, by Dr Phillippa Wiseman

The ‘Our Bodies, Our Rights’ project was undertaken to address the invisibility of disabled women’s reproductive rights and wellbeing, including those with learning disabilities. The SLDO formed a part of the advisory board as well as carrying out collaborative research with lead organisation, Engender Scotland. Women with learning disabilities disproportionately experience reproductive health and social inequalities compared to other women. They experience significant barriers to parenting, are much more likely to be excluded from reproductive and relationship health education, and are disproportionately likely to experience intimate partner and gender-based violence.  It was imperative to have targeted research that ensured the voices of women with learning disabilities were heard.

The Observatory collaborated with Engender Scotland and Dr Jo Ferrie at the University of Glasgow,  to develop an easy ready survey to include women with learning disabilities.  Of the 95 survey respondents, 21 women had learning disabilities, survey respondents were aged between 16 and 78. Of the 21 survey respondents with learning disabilities, 20 reported poor or no sexual health or relationship education at school or as adults. This was compounded by the fact that when education was provided it was very rarely in accessible formats or made accessible to girls or women with learning disabilities.

The Observatory also ran 3 focus groups with members of self-advocacy organisations which were comprised of 12 women in total. The focus group agenda was co-designed with women with learning disabilities and emphasis was placed on anonymity and informed consent. The focus group respondents were between the ages of 18 and 78. All focus group participants (12) with learning disabilities reported poor or no sexual health or relationship education at school or as adults. Some support was offered by parents, but this was not robust or comprehensive in explaining issues to do with consent, menstruation, sexual health, sexually transmitted infections, contraception, pregnancy or reproductive health screenings. None of the focus group participants felt they knew why they menstruate or what the purpose of menstruation was (see findings report for detailed findings). They had not been told that menstruation was linked to fertility, pregnancy or reproductive health and none of them were formally educated on how to manage menstruation using menstrual products. This was echoed by survey respondents who reported poor menstrual health education in school.

None of the participants had received formal education on relationships, wellbeing or consent and all of the focus group participants, and 16 survey respondents, reported sexual violence, intimate partner violence or gender-based violence that had occurred throughout their lives. This included domestic violence and rape. Of the 8 women with learning disabilities who had had children, 7 reported having their children removed in to permanent care. This reflects research that indicates that women with learning disabilities are disproportionately likely to have their children removed from their care against their wishes and all participants reported extremely poor emotional, physical and mental health as a result of having children removed from their care.

All participants reported a need for accessible, targeted sexual and relationship education for girls and women with learning disabilities at all stages of their lives.

These findings demonstrate that women with learning disabilities experience overwhelming exclusion from mainstream sexual health education, relationship education, information on menstruation and menopause, routine sexual health screenings, information about consent and coercive sexual relationships and information and support on parenting, pregnancy and post-pregnancy. Women reported ongoing experiences of gender-based violence and felt that they were not believed or taken seriously when they did report to health and social care services. The reproductive health and wellbeing of women with learning disabilities is not robust, systematic or inclusive and places women at greater risk of poor reproductive health outcomes. This was particularly evident when considering menstrual health, where women reported not knowing how long to wear menstrual products for, when to change them, what was abnormal bleeding or clotting. Similarly, poor education on contraception and sexually transmitted infections placed women with learning disabilities at risk of reproductive infections. This project underscores the urgent need to address reproductive and sexual health inequalities experienced by with learning disabilities and demonstrates that they are essential to understanding the wider determinants of health for women with learning disabilities in Scotland.

Detailed project information, methods and analysis of the data can be found at https://www.sldo.ac.uk/media/1772/our-bodies-our-rights-additional-research-report.pdf

MOTHERS ID-ABC: Using linked data to understand the mental health of mothers

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EW photoDr Ewelina Rydzewska, Research Associate at the Scottish Learning Disabilities Observatory talks about the newly funded  Economic and Social Research Council (ESRC) project MOTHERS ID-ABC led by Dr Deborah Kinnear.

We know that one in four people in the UK will experience a mental health problem in any given year and it is therefore a hugely important issue. One area that requires urgent attention is the mental health of mothers who care for a son or daughter with learning disabilities. Whilst there is some evidence to suggest that providing unpaid care and support for a person with a learning disability can be mentally and physically challenging, studies are mostly limited to very small groups of carers and this is why our new project is particularly important.

Understanding more about mothers’ mental health will enable us to provide information that will support services to deliver the right support, in the right place and in the right environment to those when it is needed most.

MOTHERS ID-ABC will use Scotland’s Census 2011 to identify all mothers of people with learning disabilities in Scotland. Amongst many other things, the Census will tell us how old they are, how they rate their own health and whether they report to have a mental health condition.

We will link the Census with other datasets to find out what medications mothers of people with learning disabilities have been prescribed by their doctors, whether they have ever used mental health services and if their child with a learning disability has died since Scotland’s Census in 2011. Linking different datasets together will not only allow us to look at the group of all mothers of children with learning disabilities living in Scotland, but also to investigate if they experience any additional mental health problems at different stages of the care pathway. For example, during childhood/youth, carers have to navigate educational systems, mental health problems start to emerge in children and young people, and puberty impacts; at age 16 the transition from school into adult services can cause considerable stress for parent carers, who also have to learn to balance the tensions of protection versus supporting independence of their child. To allow us to explore the specific effects of caring for children with learning disabilities we will also compare outcomes with those of mothers who do not have a child with a learning disability and women without children.

Similarly, as part of a PhD project, one of the Observatory researchers, Kirsty Dunn will be looking at the mental health of fathers of people with learning disabilities, using various datasets linked with the Census information.

We believe that both these pieces of work are extremely important in that they will investigate a currently neglected area of research on a national scale; hence providing a unique and much needed insight into health of carers of people with learning disabilities. It is extremely important that all voices are heard in the conversation about how best to address the needs of people with mental health conditions, especially when they are used to putting the sometimes complex care and support needs of their children first. Our ultimate aim is to help raise awareness of mental health and wellbeing and to support the development of practical tools to support families. To achieve that for carers of people with learning disabilities, we need to take a step back and find out more about their mental health first.

This project is conducted in partnership with:




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Why is oral health so important for people with learning disabilities?

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Dr Laura Ward, Research Assistant at the Scottish Learning Disabilities Observatory talks about her oral health project.

Oral health isn’t just about healthy teeth, it is also about being able to eat and swallow whatever we want, speak clearly, have normal digestion, and be pain and disease free.  People with learning disabilities experience significant health inequalities and it is not surprising that we know so little about their oral health.

I am among the many people who understand that brushing my teeth is important to avoid dental decay (caries) and gum disease – the two main diseases affecting oral health. But can I really be bothered to floss, have a ‘daily oral hygiene program’ and visit the dentist twice a year? Yet these actions are important for my health and me. So, what must it be like for someone who needs support from other people to provide them with daily oral health care? Or someone who can’t attend a dentist? Or even someone who does not have adequate accessible information about the importance of oral hygiene? There are many barriers that affect so many people in our community, including adults with learning disabilities.

We know that adults with learning disabilities are more likely to have poor dental health – more tooth loss, untreated dental caries/ low rate of restorative care (fillings). But why is this? We don’t have any definitive answers from science and the Scottish Government have highlighted oral health as important in improving the quality of life for those with learning disabilities. So we, at the Scottish Learning Disabilities Observatory, are doing a research project to find these answers. We’re using data linkage techniques to combine data collected by NHS dentists, GPs, pharmacists, and hospitals. We’ll gather all these different pieces of information about each person and put this together to gain an overall picture of the oral health of people with learning disabilities. The Observatory has permission to access anonymised information for almost 4,000 adults with learning disabilities (we won’t have access to anything that will allow us to find out who people are, like their name or their address). All of this data will give us the opportunity to learn why it is that people with learning disabilities experience poorer oral health compared to other people.

Our study will focus on the following possible risk factors:

  1. Prescribed Medications

Some drugs that are prescribed to people can have an effect on oral health. For example, people may be taking two or more medicines that interact badly and cause serious side effects, or they may be taking liquid medicines that contain sugar. Certain drugs can also cause dry mouth, reducing the protective effect of saliva, leading to tooth decay

    2.  Long term health problems

Some diseases and health conditions have oral symptoms. For example, Diabetes, Chronic Obstructive Pulmonary Disease (COPD), and Coronary Heart Disease (CHD) have all been linked to poor gum health. There is even research to suggest a two-way relationship between gum disease, diabetes, and respiratory diseases. Many people with learning disabilities have many other long-term health conditions which may affect oral health.

Although these factors are potentially preventable, i.e. we can make positive changes to address these, they are all too common in adults with learning disabilities. It is therefore crucial for us as researchers to find the answers that will potentially help. Our study will use the unique health systems in Scotland to help us understand why the oral health of adults with learning disabilities isn’t as good as people in the general population. And yes, I have started to improve my ‘daily oral hygiene program’ since working on this project!

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Reflections upon finishing my PhD and leaving the Scottish Learning Disabilities Observatory by Genevieve Young-Southward

My time at the Scottish Learning Disabilities Observatory will soon be coming to an end; I have submitted my PhD thesis and will be moving on to study for a Doctorate in Clinical Psychology. My PhD focussed on the impact of transition to adulthood on health and wellbeing in young people with learning disabilities. Working in this area has equipped me with knowledge and skills that I hope will serve me well as I begin my clinical career.

One component of my PhD work involved interviewing young people with learning disabilities and their families about their experiences of transition. I am fortunate to have been permitted insights into this highly personal and often emotional experience, and have learnt a number of valuable lessons through working with families in this way. It was important to me at the start of my PhD to ensure that people with learning disabilities were given a voice throughout my research, but this wasn’t always easy, and I had to balance the need for family members to support their children with the need for young people with learning disabilities to tell their own stories. Ultimately, I have come to respect the importance of listening to both people with learning disabilities and their families or carers, even in contexts where disagreement or even conflict is apparent.

Central to this issue is having confidence in communicating effectively with people with learning disabilities and their families or carers. When I finish my training in clinical psychology I’ll be working as a psychologist in the NHS, and undoubtedly with people with learning disabilities. I know that working therapeutically with people with learning disabilities is something that I will receive teaching on during my clinical training, but I know from friends already following the route to becoming a clinical psychologist that this is an area that a lot of people feel nervous about. There is still much work to be done in terms of demystifying effective and compassionate communication with people with learning disabilities and the Observatory is doing important work in bringing the need for effective communication in healthcare contexts to attention.

The other component of my PhD involved analysis of Scotland’s Census data. It is important to identify trends in the health of people with learning disabilities in order to highlight widespread problems or inequalities, to then identify strategies to improve the lives of people with learning disabilities in the future. Combining analysis of a population level dataset with interviews with individual families helped me to keep in mind the personal stories behind each individual included in the larger dataset. In the context of my research, every data point represented a family who were potentially experiencing the difficulties during transition that the families I interviewed described to me. This focus on the individual as well as the population underlines how important the work of the Observatory is in helping to combat the problems experienced by people with learning disabilities and their families.

My PhD research would not have been possible without the institutions, including schools and third sector organisations, which put me in touch with families who were interested in taking part in my research. I was fortunate to be involved with numerous organisations involved in caring and advocating for people with learning disabilities, and saw first-hand the hard work that so many people are putting into this area, often in the context of very limited funding. This is something that I will continue to bear in mind when collaborating with other organisations in the future. I hope that the continued work of the Observatory will help to bring about necessary changes in the allocation of funds and services to people with learning disabilities, so that we can ultimately help to decrease the health inequalities experienced by this population.

Reflections on the changing face of autism – what’s next for autism research?


Research Associate, Ewelina Rydzewska, talks about Professor Volkmar’s recent lecture on the autism research.

Recently, as part of my work for the Scottish Learning Disabilities Observatory, I had an opportunity to travel to Sweden – a country, which similar to Scotland, is well known for its cold and rainy weather. There is, however, another less well known fact about Sweden and that is its vibrant autism research community, to a great extent centred around the Gillberg Neuropsychiatry Centre at the University of Gothenburg.

One of the initiatives introduced by the Centre is the Birgit Olsson lecture, a yearly event featuring a talk given by a distinguished autism, ADHD or anorexia nervosa researcher. This year the invitee was Professor Fred R. Volkmar, M.D. who is Irving B. Harris Professor of Child Psychiatry, Pediatrics, and Psychology at the Yale University Child Study Center, School of Medicine.

Professor Volkmar is a world authority in the field of autism research. He has published over 200 scientific papers as well as a number of books and book chapters in the field of autism spectrum disorder focusing on genetics and other neurobiological aspects, diagnostic issues, treatment, course and outcome, adaptive skills, somatic comorbidity and language impairment. What is more, Professor Volkmar was the primary author of the American Psychiatric Association’s DSM-IV autism and pervasive developmental disorders section.

He also happens to be a very charismatic speaker with an incredible skill of taking an audience on a captivating journey through the world of autism research. Apart from giving an overview of the most important developments in the field of autism research, diagnosis and practice, Professor Volkmar also added a personal touch to his speech by reflecting on all the life lessons he had been privileged to learn from his patients with autism over the years. I found myself absolutely immersed in the story he was telling us all in that lecture theatre on a rainy afternoon in Gothenburg. Based on his clinical and research practice, Professor Volkmar talked at length about the importance of establishing a relationship of mutual respect for each other as unique human beings, both with colleagues and patients, as well as seeing the world from a perspective that’s potentially different or opposing to ours, yet so enriching and humbling in its dissimilarity.

Professor Volkmar also pointed out that despite all the effort and work which has gone into improving the quality of life for people with autism over the last few decades, there are still significant gaps both in autism research and practice. We still don’t know enough about suicidality and mortality in autism or what health and social problems people on the spectrum face in older age. Some other research priorities for autism have recently been named by Autistica through their collaborative initiative with the James Lind Alliance and other autism related partnership organisations. One of these priorities includes research on interventions improving or reducing mental health problems in people with autism. Our forthcoming Newsletter (you can catch up on previous issues here) is also centred around the theme of research into mental health problems for people with learning disabilities and/or autism. We’ll be discussing a number of projects currently underway in the Observatory, so please watch this space if you want to know more!

New NICE guidelines on supporting people with learning disabilities and mental health problems

It is shocking how little we know about the mental health problems of people with learning disabilities.

The new clinical guideline published today by the National Institute of Health and Care Excellence (NICE) shows mental ill-health is a big problem for people with learning disabilities, but research on it is severely limited. This means mental health needs are often overlooked and left untreated.

To be clear, the new guideline is a thorough and important document outlining what we do and don’t know. Among the 382 pages of evidence the guideline group compiled over the last 20 months, are important recommendations to help improve mental health outcomes for people with learning disabilities. The guideline also points out that we need much more research to help people with learning disabilities.

NICE provides national evidence-based guidance and advice to improve health and social care. It was set up in 1999 to reduce variation in availability and quality of NHS care. In 2012, its remit expanded to include social care. NICE recommendations are evidence-based, and they explicitly consider value for money.

The Department of Health, England, and the Welsh Assembly asked NICE to prepare the clinical guideline in recognition that for people with learning disabilities, mental health problems are too frequently overlooked or misattributed. This has meant that people with learning disabilities aren’t getting the right treatments when they need them, or get the wrong treatments. Poor access to services and variability in service provision often makes matters worse.

The guideline is an important step forward, and could make a real difference to the lives of people with learning disabilities. It covers prevention of mental health problems as well as assessment and treatment. The guideline covers all ages, and all settings in which care is provided, and importantly recognises the vital role that families and paid carers play in helping to identify and manage mental health problems. This comprehensive focus is essential as we need to implement change across the whole system from education, health, and social care, through to the criminal justice system if we are to enable all people with learning disabilities to have access to the best quality of care at the right time and in the right setting.

NICE guidance is officially for England, but there are agreements to provide some NICE products and services to Wales, Scotland, and Northern Ireland.

So what does this guideline mean for services in Scotland?

Many if not all of the issues identified by the guideline are the same for people with learning disabilities in Scotland.

The recommendations are built on a thorough evaluation of what we know and what we don’t know, so the recommendations set out in this document present a real opportunity to improve mental health for people with learning disabilities here in Scotland.

Can Scotland deliver on the new NICE recommendations?

Here is a taste of some of them.

All people with learning disabilities and a serious mental illness should have a key worker.

Health, social care, and education services should train all staff who may come into contact with people with learning disabilities to be aware about their mental health problems. (This recommendation is for all staff, not just those working in learning disabilities services.)

Health, social care, and education services should support people to live where and with whom they want.

People with learning disabilities should be offered an annual health check by GP practices.

Parent training programmes specifically designed for parents or carers of children with learning disabilities should be considered to prevent or treat mental health problems in the child, and to support carer wellbeing.

Family members and carers should be advised about their right to a formal assessment of their own needs and health, and their right to short breaks and respite care, and how to get them.

Only specialists with expertise in treating mental health problems in people with learning disabilities should start medication to treat a mental health problem in adults with more severe learning disabilities, and children and young people with any learning disabilities.

Consider reducing or stopping anti-psychotic drugs in people who are not psychotic, or document the reasons for not doing so.

As well as the lengthy full guideline, NICE have published a short version which includes all the recommendations. There is also an easy-read version, a “what care you should expect” version for carers, a financial assessment of the recommendations, and a care pathway on the NICE website.

Read the recommendations – these are the good practice things that should be happening in your locality.

We better go and do some research now – so much more is needed!

Anna Cooper & Angela Henderson

Health inequalities and autism

Dr Ewelina Rydzewska is a Research Associate at the Scottish Learning Disabilities Observatory. In her first blog as a member of the Observatory team, Ewelina reflects on the importance of building evidence on the health inequalities experienced by people with autism.

As some of you may know already, our latest newsletter talks about some of the work we are undertaking to better understand the health and healthcare of people with autism. In 2011, the Scottish Government launched a ten year autism strategy, focusing on the need to improve access to diagnosis and assessment, deliver consistent service standards and to underpin these with evidence. Over the last decade, the Scottish Government has invested in the development of diagnostic assessment services for children with autism, which has led to an associated substantial increase in the awareness of autism. However, we still know little about health outcomes for people with autism, especially in adults.

This month the Westminster Commission on Autism have launched their report presenting findings from an inquiry into access to healthcare for people with autism in England. The investigation has revealed a number of problems that people with autism face when accessing healthcare. Their survey of people with autism, parent-advocates and professionals, found that 74% of all respondents feel people with autism receive ‘worse’ or ‘much worse’ healthcare than people without autism and 88% of the respondents with autism do not think that health professionals understand their needs as an autistic person.

Our own research showed that only 37% of people who reported to have autism through the Scotland’s Census 2011 rated their own health as very good compared with 52% of the rest of the population. Our work around reviewing existing research on additional health needs in autism also showed that mental health problems and epilepsy are very common in these population groups, but some findings on other conditions in autism can be contradictory or not very robust. For example, recent reviews of studies on anxiety and psychosis report wide ranges in the rates of these conditions for people with autism.

At the Observatory, we’ve got an important role to play in supporting the goal of health improvement for people with autism, which is why we have been focusing a lot of our efforts on identifying these population groups within routinely collected data. This work includes a significant number of people with both autism and learning disabilities, as 18% of people who reported to have autism through the Census also said they had a learning disability.

The Observatory has a vital role to play in generating a better understanding of the specific health needs of people with autism. This information is essential in steering the development of effective supports and services. To achieve this, we need to communicate our work to a wide range of audiences, including professionals who are involved in commissioning and developing services as well as autistic people and carers. Information is available on our website, where you can search for autism data across lots of different topics, read accessible reports and find out about all of our programmes of work. We are always keen to receive feedback, so if you have any comments about our work, please do get in touch. Ultimately, we hope that by working in partnership with people with autism as well as those who provide support, we will be able to address some of the current gaps in evidence and make a positive contribution to the health and wellbeing of people with autism across Scotland.

You can get a copy of our Newsletter below:

Newsletter Volume 3

Easy Read Newsletter Volume 3

Allowing young people with learning disabilities to tell their own transition stories

Genevieve Young-Southward is a PhD student at University of Glasgow and in her first blog for the Scottish Learning Disabilities Observatory she shares some of her experiences relating to her research project.  

My PhD research concerns the impact that transition to adulthood (involving leaving school, moving from child to adult services, and adjusting to adult roles and environments) has on the health and wellbeing of young people with learning disabilities. As part of my research I am conducting interviews with young people with learning disabilities and their parents or carers to gain insights in to their personal stories of transition to adulthood. It is important to include people with learning disabilities in research about them; giving young people a voice on this subject is crucial because transition is such a pivotal point in a young person’s life, and it can be a highly personal experience.

Including young people with learning disabilities in my research hasn’t always been easy, though. The interviews for my study take place in interviewees’ homes, with separate questions for young people and their parents or carers. I’m finding so far that the majority of parents seem to prefer to stay in the room with the young person while they answer my questions, which is completely understandable: I am a stranger, after all, and parents might not feel comfortable leaving their son or daughter on their own with me. Transition is a point in a young person’s life during which they are on the cusp of adulthood, and although many parents may be attempting to encourage and facilitate independence in their child, they may not be at a stage where they feel comfortable allowing them to speak to me by themselves. Parents may also be accustomed to advocating on their son or daughter’s behalf, which in many cases is vital for ensuring that they have access to the services and support that they need. This might mean that being left out of a discussion concerning such a huge part of their child’s life feels uncomfortable for some parents.

However, this situation might result in young people’s voices remaining unheard. Although families are a central aspect of many young people’s transition experiences, as for any young person it may be difficult for them to discuss their experiences in relation to sensitive or personal issues, such as relationships or mental health, in the presence of their families. Both of these examples have crucial implications for transition, and are covered in my interviews. In my experience of conducting these interviews so far, parents have in some cases found it difficult to step back and allow their son or daughter to speak for themselves, and while in some instances this might be a necessity, it is also important that young people are given the freedom to express themselves.

We are accustomed to making assumptions about what young people with learning disabilities want, and advocating on their behalf, and while this is hugely important, it is also crucial to take time to listen to what young people themselves have to say. In my own experience the young people I have spoken to have provided valuable and thought provoking insights in to their transition experiences, even if it was only through a single word.

This discussion has implications for both research and clinical practice. Future research seeking the views of young people with learning disabilities might benefit from having interviews or focus groups take place in a space that is still safe and familiar for young people, such as a school or college, but that is outside of the family home, to give young people the space and autonomy to express themselves independently. In terms of clinical practice, this discussion emphasises the necessity of health professionals taking the time to listen to young people themselves during appointments, as well as to parents or carers, in order to ensure that everybody’s voice is heard.

Thanks for reading!



Welcome to the new Scottish Learning Disabilities Observatory website!

What sort of lives are people with learning disabilities and people with autism living in Scotland? Where do they live? How old are they? Are they in work? How do they describe their health?

At the Scottish Learning Disability Observatory, we think answering some of these questions is the first step to understanding how we can help improve the health and wellbeing of people in these groups. With a clear picture of the issues faced by people with a learning disability or people with autism, we can start to think of effective policies and actions that can really make a difference, knowing that these are based on a strong evidence base.

That’s why we’re really excited about the launch of the new Scottish Learning Disabilities Observatory  website this week. For the first time, we can present detailed answers to the questions above in a clear, accessible format. If you scroll through the pages of the site you can find data that’s broken down by health board and local authority area; you can pull up statistics that describe how many people are in and out of work or whether they feel they feel healthy or not. With this information we can start to explore some quite difficult questions, for example whether living in a rural area affects the chances of getting a job for people with learning disabilities more than it would for people living in less rural areas.

We think this will be a really important tool for everyone in Scotland who wants to help improve the lives of people with autism and people with learning disabilities. Doctors, social care workers, individuals and families, local authorities, researchers, government policy makers, charities, employers, academics…. there is a long list of people and organisations for whom we hope this data will be useful.

The data presented on the Observatory website comes from the 2011 Scotland Census. This is a fantastic resource which contains a wealth of information about everyone living in Scotland: if they work, how they travel to work, how old they are and who they live with. One of the really useful aspects of this survey is that it asked people whether they had a learning disability or autism. Nowhere else in the UK has this question been asked, in this way of the whole population.

But turning this into information that is easy to access and understand hasn’t been straightforward. We hope that we have developed something that is informative and useful, and as we expand and diversify the content we want this to become a resource that can help us all take action to ensure that people with learning disabilities and people with autism have the chance to live healthier, longer lives.

You can view the new site at: www.sldo.ac.uk 

Please let us know if this is useful to you or if there are any particular aspects of census data that you would find useful – get in touch!



Scotland’s 2021 Census Consultation. Have your say!


12th January 2016

Laura Hughes-McCormack is a Research Assistant with the Scottish Learning Disabilities Observatory. In her work at the Observatory she is investigating health needs of people with learning disabilities. She is currently looking at Scotland’s Census data around learning disabilities, which is the topic of this most recent blog.

National Records of Scotland is currently holding a topic consultation for the planning of Scotland’s 2021 Census. We would encourage anybody who is interested in this vital source of information about the population in Scotland to take up this opportunity to influence the next census by the 15th of January 2016 deadline. See Scotland’s 2021 Census Consultation.

Publication of data from the last Scottish Census in 2011 has certainly kept the team at the Observatory busy in recent months, with the publication of data drawn from the newly added question on long term health conditions and disabilities. Question 20 asked people whether they had a learning disability or autism. This data is highly relevant to the Observatory and findings have the potential to provide incredibly useful insights into the lives of people with learning disabilities and autism in Scotland.

Detailed information about all aspects of peoples’ lives is captured in the Census, for example where they were born, where they live and who they live with, jobs, education and health. From the Census 2011, 26,349 (0.5%) people identified themselves as having learning disabilities from the total Scottish population (n=5,295,403). This includes 15,149 (57.5%) males and 11,200 females (42.5%). Of this, 5,234 were children (0-15 years), and 21,115 (16-85+ years) are adults. Also 31,712 people identified themselves as having autism (0.6% of the total population), including 24,490 (77.2%) males and 7,222 (22.8%) females.

By comparing all this information for people with learning disabilities and people with autism to the general population, we can better understand the inequalities that people with learning disabilities and autism face. For example, we were able to find out how people with learning disabilities and/or autism, rated their general health, which is a good predictor of future demands on health services. We found that children and adults with learning disabilities reported poorer health (47.9% and 40.3%), compared to children and adults in the general population (2.1% and 13.8%). We have not found any other data source that can provide this level of information about the lives and health of people with learning disabilities compared to people in the general population across the lifespan.

The National Records of Scotland is calling out for the Scottish public to give their views on the topics to be included in the 2021 Census questionnaire. Here at the Observatory, we are currently drafting our response to the topic consultation and we will continue to work with National records of Scotland to help build the quality of information available about the lives of people with learning disabilities and autism from Census data. The Scotland’s census only happens once every 10 years and plays a vital role in understanding Scotland and its citizens. Don’t miss out on this opportunity to have your say!

The census 2011 has been a key part of the Observatory’s work programme so far and will be a central feature of our new interactive website, to be launched in February. We look forward to continuing to build upon the success of Scotland’s 2011 Census.

You can find out more about my work at the SLDO here.