“All of us who provide support to people with developmental, cognitive disabilities will learn a great deal. These are wise guidelines deeply embedded in scholarly research and direct patient care and I commend it to everyone concerned about someone with intellectual disability and their future. Moreover I predict that Irene’s ground-breaking guidelines will have a profound influence beyond her current field of practice.”
Professor Baroness Sheila Hollins, Professor of Psychiatry of Intellectual Disability and member of House of Lords, UK
“As a parent, I wish I had been able to use these guidelines by Dr Irene Tuffrey-Wijne when my daughter was slowly dying. Her guidelines are realistic, reassuring and rooted in a deep understanding of the highly individual needs of people with intellectual disabilities. It makes total sense to me that breaking bad news is a process, not an event. It demonstrates that it is possible to support someone with intellectual disabilities to come to terms with painful issues.”
Jan Sunman, parent carer, UK
“I found the book a pleasurable read, despite the delicate subject matter. It is clearly written and is full of examples that are instantly recognisable in my daily practice. The guidelines highlight the importance of helping clients understand bad news situations regardless of their level of intellectual disability. It proves how including a client’s support network in the process can be crucial in ensuring that bad news is successfully relayed. Practical and easily accessible, we are finally provided with a set of solid guidelines to support our practice.”
Marja Oud, palliative care lead and unit manager in a residential facility for people with intellectual disabilities, Netherlands
“As a palliative care social worker I have been in many situations where I have had to break bad news to someone with an intellectual disability. I agree that simply using step by step protocols is not straightforward. I often hear staff from residential homes say “what is the point, they don’t understand anyway”. I shall direct people to this website. I really like these guidelines. They are easy enough to understand without being patronising. It has a direct no nonsense feel to it. I look forward to sharing this with the palliative care doctors I work with. I think all ward staff, including health care assistants and domestic staff, would benefit from some training or workshops on this.”
Jason Davidson, Senior Hospice Social Worker, UK
“These guidelines are good, written in a style that professionals will be used to but still accessible to family carers like me. If the medical profession accept these ideas and follow them, then you will have created a much happier experience for so many people.”
Pete Crane, father, UK
“These guidelines for breaking bad news give us a tool to break down and then build back up any manner of bad news. The bad news is turned into a framework of information which helps our clients and their families/carers to gradually take on the news at their pace, and to their understanding. This maximises someone’s ability to make their own decisions. It also helps us to clearly identify where gaps in knowledge are, and take action to change this if we can. If someone lacks capacity to take on, or make use of information, the framework acts as a clear map of how we can enable them to be as involved as possible in making decisions that affect their lives.
For families afraid of bad news being given bluntly, the guidelines have enabled me to show families how we are going to support their relative to understand information, and to reassure them that we would not arbitrarily give someone information they do not or cannot understand. We use the guidelines to build up someone’s knowledge.
I’ve started to use the guidelines in a number of different scenarios – with a someone in renal failure, building on concrete understanding of what is happening now; with a terminally ill client to try and help her understand what was happening, and to help her family come to terms with her prognosis; and more recently with a client who was in hospital, and needed to move home. The guidelines helped us to establish his level of comprehension, and the way in which his world works.
With the website and book, I am looking forward to taking the guidelines out into the multidisciplinary team, and to be able to provide them with the links and tools they need to use it.”
Sue Marsden, Community Intellectual DisabilityTeam, UK