Irene Tuffrey-Wijne
Why we need to think about assisted dying and people with learning disabilities
In future people with learning disabilities could be granted euthanasia requests too easily
The benefits of gaining research experience through a secondment
This article describes one learning disability nurse’s experience of being seconded to work on a research project in a university setting. The nurse Tracey Rose and her academic manager Irene Tuffrey-Wijne argue that the benefits of such a secondment go beyond the obvious advantages for the nurse, who gained research skills. The delivery of evidence-based care and support is enhanced when learning disability nurses are engaged in research. Creating opportunities for a secondment can support nurses’ career progression and may also help promote staff retention. For the academic partner, a close link with clinical practice can keep the research grounded and help to clarify the impact of research on practice. The authors also discuss the challenges in making this type of secondment work.
Breaking bad news to people with learning disabilities and dementia
People with learning disabilities are now enjoying a longer life expectancy than ever before as a result of enhanced medical and social interventions and improved quality of life. Some, particularly individuals with Down’s syndrome, are susceptible to dementia at a significantly younger age than the average age of onset in the rest of the population. Currently, there is limited guidance on how to talk to people with learning disabilities about dementia and, until such information is shared, individuals cannot be positioned as an authority on their own condition. The new model presented here suggests a way of supporting staff and families to have enabling conversations about dementia that centre on the person’s current situation, level of understanding and capacity.
The preferred place of care for people who are dying
This article considers the factors that influence where people with learning disabilities are cared for at the end of life, and where they die. It is based on the findings of an in-depth study of 13 people with learning disabilities who had cancer, ten of whom died. Dying at home was not always the best option. Features of a good place of care included being in safe surroundings with familiar people, being free from pain and anxiety, and having carers who were well supported. People’s own preference were a factor influencing the place of care; others were the illness trajectory and availability of social and outside support. The author argues that understanding the person’s wishes and needs requires careful listening, plus consideration of the realistic options, with constant adjustments to a changing situation. There should be no assumptions about what is best.
‘Getting on’ with cancer
Most people worry when they are told they have cancer. They also become anxious if somebody close to them develops the condition. Typical questions include: ‘What is cancer?’ ‘What are the treatments for?’, ‘Do I have to take the medication?’ or ‘Will the treatment work?’ Information about cancer should be given in a format that can be understood, and people with learning disabilities often find it difficult to access mainstream information materials. In addition, they are often not given enough information about their condition by those around them, while some are completely excluded from the truth.
Care of the terminally ill
There are various reasons why residential care homes for people with a learning disability may feel unable to care for a terminally ill resident.