The most important thing to remember is that everyone deals with bad news differently. “It’s not a recipe book,” says Irene, “you really have to look at each person and the people around them.”
Not everyone wants to be told certain things, because it would be too upsetting. “If people have previously said they don’t want to know something, absolutely don’t tell them – people have a right not to be told, but it has to come from them,” says Irene.
Those who are told need to be told at the right time. To be able to do that, you have to find out what the person already knows. “You build on someone’s framework of knowledge – how they see the world, what they know about life and what’s been going on,” explains Irene. “You just have to work with what you’ve got and what they need to understand next to make sense of the situation.”
The only exception to this rule is if there’s an immediate change in someone’s circumstances. “You have to tell them straight away,” says Irene, “and build their understanding of it afterwards. You have to do that very simply and clearly – you can’t say ‘we’ve lost dad’, because they will think you can find him. They take things literally.”
So, who should break the news? “I don’t think you can prescribe that,” says Irene. “It’s got to be somebody who knows the person, knows the issue, knows what the bad news is.”
Obviously, it depends on the situation. For most people, it’s the doctor who tells you if you’ve got cancer, for example, but that’s not true for people with a learning disability. “Usually it’s their families,” says Irene, “and they haven’t got the training. There may be situations where it may be advised that it comes from the doctor, but you might want to have someone else there to explain things more clearly.” There’s also the Mental Capacity Act to consider – if the person has capacity, the doctor should tell them first.
It is difficult for families to break bad news, as often it is upsetting for them too, but sometimes, that’s the best thing for that person. “A lot of mothers say ‘I want to be the one telling him’, but they would have to be well supported by professionals in order to do it,” explains Irene.
Whoever breaks the bad news in the end, Irene believes that everyone – from the family and carers to the doctor – needs to be involved in finding the most appropriate solution.
As real as possible
When it comes to bereavement, support for the person with a learning disability should continue after the death, to ensure the person understands what has happened and what that means for the future. That involves making the loss feel as real as possible.
The most important thing is to keep the person involved in the grieving rituals – everything from reading sympathy cards to attending the funeral. It’s also helpful for the person to be able to do these things and share their loss with others, “to make it clear that everyone has different ways of reacting and every way is fine”, says Irene.
It is also important that people can remember the person who’s died – by looking at photos, creating a memory book or just talking about them. “It’s often really helpful to reminisce, so it’s providing those opportunities,” says Noelle Blackman. “Not forgetting anniversaries and birthdays is really important.”
When a family member dies, there are often associated losses – moving house or changing routines – which can be just as difficult to deal with. Where possible, for example if a carer has a terminal illness, families should make plans for the future. “Then there doesn’t have to be emergency changes. And the changes are things that the person knows will happen and is happy about,” says Noelle.
“But not everything should change. If there is a change in where the person is living, it’s important to keep the other frameworks of their life similar – the same workplace, education centre or church.”
The fact that this advice is available illustrates that we’ve come a long way in dealing with bad news, but there is still more work to be done. “Services have got much better at recognising issues around supporting people with bereavement, but I don’t think we’ve got good enough and I think staff still find it incredibly difficult,” says Noelle.
Respond offers training courses to professionals, and Noelle is developing a bereavement needs assessment screening tool. This will allow families and professionals to recognise vulnerability that may cause complex grieving for people with a learning disability and equip them to support them. And Irene’s book ‘How to break bad news to people with intellectual disabilities: a guide for carers and professionals’ will be published in the autumn by Jessica Kingsley Publishers.
But we also need to tackle society’s general reluctance to talk about death. “If you are faced with issues of loss and death, you are also faced with your own,” says Irene. “People find that very difficult.”
The Dying Matters campaign aims to change that and even parliament is getting involved. In a debate in the House of Commons, in January, Conservative MP David Burrowes, said: “As a nation, we need to get better at talking about dying, death and bereavement.”
Email Irene to find out more about the guidelines