Dark Side of Medicine™

Getting older has made me think about things I would probably rather not have to think about.

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For most of my daughters' lives, I have been there. I have been the person who remembers their history, explains their needs, notices when something isn't right and, when necessary, challenges decisions being made about them.

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Over the years, I have accumulated an enormous amount of knowledge about my daughters. Not just their diagnoses, the medicines they take or the care they need, but the ordinary things that make them who they are. What makes them anxious. What helps. What they enjoy. How they communicate when something is wrong. What they can manage for themselves and where they need support.

Much of that information lives in my head.

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As I have got older and experienced changes in my own wellbeing, I have begun to realise how vulnerable that makes all of us. It is not just our children whose health and circumstances can change. Mothers get older too. I have my own long-term health problems and have spent most of my life taking medicines. I cannot assume that I will always be able to do what I do now.

When something happens to me, it doesn't just affect me

This was perhaps one of the harder things for me to recognise.

Changes in my own wellbeing can boomerang into my daughters' lives.

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If I am unwell, tired, unable to remember something, unable to attend an appointment or simply not there to explain, the consequences do not necessarily stop with me. My daughters may lose the person who would normally fill in the gaps, notice that something has been misunderstood or say, "No, that isn't how she communicates," or "There is a reason she needs this."

I began to realise that I needed to get more of what I knew out of my head and into a form that could stay with my daughters.

Experience made that feel increasingly important

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My concerns did not come simply from worrying about some distant future.

There have been times when carers have not understood or respected my daughters' needs in the way I would have expected. I have also encountered assumptions about their disabilities which did not reflect the women I know.

There have been times when I have raised concerns about my girls safety and what I have said has been ignored. On occasions, I believe this has put one of my daughters at risk.

That frightened me.

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A diagnosis can tell somebody something about a person's disability. It cannot tell them who that person is.

It cannot tell them what makes her laugh, what frightens her, how she shows that she is in pain, whether silence means she is happy or overwhelmed, what she wants to do tomorrow, or what she hopes for in the future.

When somebody has difficulties communicating, remembering or explaining what has happened to them, those details become even more important.

They can also be part of keeping someone safe.

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I have witnessed my daughter confused and trusting in another person, being persuaded that no harm had been done, until someone else confirmed that she had indeed been put at risk.

That experience stayed with me.

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It made me think much more seriously about vulnerability and the potential for abuse. What happens if somebody doesn't understand what my daughter is trying to communicate? What happens if her distress is dismissed as part of her disability? What happens if somebody makes an assumption about what she is capable of, rather than asking her?

And, importantly, how would somebody else know that something wasn't right?

Care is about more than what somebody needs help with

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I also began looking differently at care plans.

Of course they need to contain information about health, medicines, risks and the support somebody requires. But that isn't enough.

My daughters need support to live their lives, not simply to have their basic needs met.

Increasingly, I worry about what happens when the easiest or most cost-effective option for a service is not the option that is right for the individual.

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Something may be easier to organise. It may require fewer staff hours. It may cost less. But none of those things necessarily tells us whether it is what the person wants, whether it meets their needs, or whether it will give them a good life.

There are other complexities too. One of my daughters has a partner whose support needs are greater than her own. Without the right support and understanding of her needs, there is a risk that she could gradually find herself taking on the role of a carer, despite having significant support needs of her own.

That is exactly why knowing the whole person matters. Looking at what someone appears able to do at one moment does not necessarily tell us what they can sustain, what it costs them to do it, or what support they need to have a life of their own.

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It made me think about the information we record.

Alongside "What support does she need?", shouldn't we also be asking:

What does she want?

What matters to her?

What makes her feel safe?

Who matters to her?

What does she enjoy?

What does she want her life to look like?

That is where the My Life Series began

I wanted somewhere to record the information that can so easily disappear between medical records, social care assessments, support plans and people's memories.

But I didn't want to create another professional assessment.

I wanted something centred on the person.

The My Life Series therefore looks at different parts of everyday life — health, communication, interests, food, routines, friends and support, places people go, daily living, goals and dreams, and planning for the future.

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The pages do not all have to be completed. People can choose what is useful to them, add to it gradually and change it as their lives change.

Where possible, the person themselves should be involved in deciding what goes into it. For people who need support to do that, those who know them well can help.

Most importantly, it should remain their story.

Looking towards a future I cannot completely control

I cannot know what my daughters' lives will look like in ten, twenty or thirty years.

I cannot know who will be supporting them, what services will look like or how much I will be able to do.

That is difficult to acknowledge.

But I can begin making sure that the knowledge accumulated over their lifetimes does not disappear because I become ill, my memory changes, I can no longer advocate as I do now, or one day I simply am not there.

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The My Life Series cannot guarantee that every future decision will be the right one. It cannot guarantee that everybody will listen.

But perhaps it can make it harder for the person herself to become lost amongst diagnoses, assessments, budgets and care plans.

My daughters are more than the support they need.

They have preferences, relationships, histories, personalities, hopes and futures of their own.

And ultimately, that is what the My Life Series is about: helping to preserve the knowledge of who a person is, what matters to them and how they want to live, so that their voice remains part of decisions about their life - even when the person who has always helped to make that voice heard can no longer be there.