The Tizard * centre at Kent university has existed for 28 years. It describes itself as “at the forefront of research into autism, intellectual disability and community care.” It says its work is “highly influential and has helped to improve lives across the UK and internationally.” Two current research projects (on vaccination and on-line experiences) indicate the relevance of the Centre’s work. They are described below. But first, should we believe claims universities make about themselves?
In the global competition for brains, universities always say they are best. The UK Research Excellence Framework Rankings provide instead more independent measures of quality. 2014 is the latest year for which data are available. Out of 126 universities and institutions, Oxford is ranked number 1. Leeds Trinity university is last. Kent university comes in at 30 using the Framework’s ‘research power’ measure.
This is a highly respectable score. The framework ranks 25% of Kent’s submitted research as ‘world-leading’, 48% as ‘internationally excellent’, 24% as ‘internationally recognised’ and 3% as ‘nationally recognised’. However, the data do not attribute scores to specialist centres within universities.
Vaccination and Covid 19 – making adjustments, giving consent
Two projects at the Tizard Centre are (to the present author at least) impressive. They demonstrate potential for ‘real world’ benefits, although results could take years to show up in public policy or better practice. The first is led by Kit Harding. Kit worked as a special needs tutor for adults and teenagers with learning disabilities. They were educated at home. His research is supervised by Paraskevi Triantafyllopoulou at the Tizard Centre. It seeks to discover the prevalence of vaccinations for Covid 19 and other conditions affecting people with learning disabilities. It also seeks to record individual experiences of vaccination at a human level.
It is hardly surprising that very little is known about this topic. In an emergency the collection of data about minority groups may not be seen as a priority. When the long-promised government enquiry into the Covid 19 pandemic takes place, such research might play a useful role. But what do we know already?
We know that people with learning disabilities have increased health risks compared to the general population. We know they are at higher risk of premature death. Adults with learning disabilities have been offered vaccines for influenza, pneumococcal pneumonia and shingles; whooping cough vaccine (for pregnant women with learning disabilities), and Covid-19. Yet in 2017-18, according to NHS Digital, only 44.9 % of patients with learning disabilities received an influenza vaccine. It is not clear from other studies whether vaccination coverage is generally lower in adults with learning disabilities.
The Tizard study aims
- to explore the experiences of adults with learning disabilities about vaccination and identify how many people with learning disabilities can access vaccination.
- to explore the decision-making process for vaccination in case an individual lacks capacity.
- to compare the findings from individuals with learning disabilities with the general population.
Readers are invited to contribute their experiences to this research project.
The on-line world – risks and benefits
The second project is quite different. In a project funded by the school for social care research at the national institute for health research, principal investigator Paraskevi Triantafyllopoulou (assisted by Jessie Newsome) is looking at promoting safer online lives and internet use by adults with intellectual disabilities.
Many people with intellectual disabilities have internet access and use social media. New homes (such as those encouraged by Coral Living) include fast broadband as standard. The internet can be life-enhancing. It promotes independence of thought and action. It is both educative and entertaining. But it also comes with risks, as any parent knows. These include cyber-bullying and forms of criminal exploitation.
The government is bringing forward new statutory protections and regulations to make the internet safer but what are the issues affecting people with learning disabilities? So far, more than 500 responses have been received to the on-line survey. Interviews have been conducted and focus groups held with carers, individuals and professionals. An interactive mobile App is envisaged for the last part of the study.
Please visit the University of Kent website for more information about the Safer Online Lives project.
*Jack Tizard (1919 – 1979) was a professor of child development and president of the British Psychological Society. He was among the first psychologists to study experimentally the learning potential of adults with learning disabilities and promote the de-institutionalisation of people with learning disabilities.