A new online tool to help you plan ahead – Dr Kathryn Mannix

Categories: Care, People & Places, and Research.

I’ve always believed that we are the best people to solve our own difficulties. We may need advice from experts, support from friends and time to mull things over, but we are far more likely to solve a problem successfully if we do it ‘our way.’

That’s true whether we are trying to choose a new car or kitchen gadget, adapt to big life changes like a bereavement or developing a health problem, give up a habit we’ve had for years, or tackle the mess in the attic (perhaps that tells you a lot about my attic).

The same applies when our doctors advise us to take an important step like plan ahead for future ill-health, infirmity or even for the way we would like to be looked after at the very end of our life.

The very best person to decide our priorities isn’t that doctor, no matter how well she or he know us. It isn’t our best friend, spouse or partner, either. The doctor’s expert advice, and the friendly support of people who know us well, are important as we mull over the different possibilities for care, treatments, where to live, where to die. But the decisions are ours.

Planning ahead for future health challenges is important, but it’s hard to know quite what to plan for. The younger and healthier we are, the less important those decisions seem. But if we were to walk around the A&E department of a busy hospital on any day of the year, we would meet dozens of people who wished they had planned ahead.

Some already knew they had significant health problems, from heart trouble to cancer to problems with lungs, kidneys, joints or significant mental health challenges. Others thought all those problems were far away in their future, yet today they are suddenly injured or seriously ill. And, of course, Covid-19 has really added to the uncertainty we all live with.

During the UK’s first surge of Covid-19, a group of people shared their concern about how difficult it was for everyone to get access to simple, helpful information about the treatment choices that might lie ahead for anyone made seriously ill by the new virus.

The group included some IT experts, a nurse and a doctor. They put their heads together to devise a simple online tool to provide information about those possible Covid-19 decisions like ‘Would I choose home or hospital?’ ‘Would I agree to a ventilator?’

This ‘citizen project’ then received help from a whole variety of organisations who wanted to support their helpful tool*, and so the Planning Ahead tool   was born. It still includes covid-related information, but it has grown to include more general health-related decisions, too.

A development group (now a mix of medical/nursing/end of life care experts and IT experts) wants help from the public, to ensure that tool offers the right kind of information in the easiest way to use.

Could you help them? Simply by using the tool, you could begin your own conversations with family, friends and the medical experts who know you best, to Plan Ahead.

If you wish, you can also complete an online questionnaire after using the tool, to help the development group to keep improving the tool. If you agree, you might also be contacted to speak to a member of the team so they can understand better what you found helpful and how you think the tool could be improved.

Anyone can use the tool and volunteering to give feedback is optional. If you’d like to take a look you can find it online  .

In all my years of looking after people at the very end of their lives, I met many people and families who regretted that they had not planned ahead or thought through their options. Of the people I met who had planned ahead, no-one regretted it.

So why not think about it? The link will give you things to think about, but the decisions you reach are all yours.

This blog was first published on 

Re-published with permission.

*supporting organisations include Marie Curie, HospiceUK, the Royal College of Nursing, the Royal College of General Practitioners, the Royal College of Physicians, the Faculty of Intensive Care Medicine, the Association for Palliative Medicine, the British Geriatrics Society, the Universities of Aston, Cardiff and York (whose researchers are helping to refine the tool from users’ feedback) and others are still coming on board. All are welcome!

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