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A carer's guide to getting organised with professionals

Elizabeth shares her experience of getting organised and getting the most out of your interactions with professionals.

As carers we often have to deal with many professionals. When we feel a professional has not explained things clearly, does not see the whole picture, orisn’t doing what’s best for the person we’re caring for, we can be left feeling frustrated and powerless.

A carer's guide:

I don’t know when I started caring; I was always helping my mum. Even as a child I would look after my brother, who was eight years younger than me. By the time I was 20 my mum had been diagnosed with arthritis and with my dad away for work a lot, the role of looking after mum fell on me.carers guide organised

Then, my youngest son John was born with the umbilical cord around his neck. He wasn’t breathing for a few minutes, which left him brain damaged. Of course, it was natural for me to care for him. Things weren’t very easy back then, both sets of grandparents refused to accept John and it took doctors eight years to diagnose him correctly. I was repeatedly blamed for being a ‘bad mother’.

Over the years both our other parents started to decline and my husband Joe and I were not only looking after John, a growing and challenging child with severe learningdifficulties - but also my mum and dad and Joe’s parents too. Between them there were two heart failures, prostate cancer, bowel cancer, Alzheimer’s, three joint replacements… to name just a few of their ailments!

My husband and I were seen as something equivalent to ‘handmaidens’ at that time.

We were expected, by the authorities, to do whatever the patient wanted, regardless of our own situation.

From my early career in social work, degrees in business studies and law, and experience of running my own business, I am a highly organised person - something which serves me well as a carer. I had to appeal to the Secretary of Education to get John the schooling he needed, and have had many other battles since then. Even with the confidence I have, I’ve found it a real struggle at times. I don’t want people to fall into the same holes as I did.

As an adult, John now lives on his own in residential care, but he has reading, writing and speech problems, so I still help out a lot. Hugh, my eldest son will look after John when he’s at home, but I would never ask him to provide the care that I have had to over my lifetime.

John’s needs haven’t been assessed correctly and I struggle to support him even with the agency care he has. I’m currently battling with social services to have his needs reassessed. Sometimes it seems that bureaucracy and its different authorities can disempower the very people they are trying to empower. I hope I live long enough to see the scales tip in the other direction.

Elizabeth's top tips for getting organised

Start a diary

Don’t call anyone without noting down who you’re speaking to, what the date is and what the agreed outcome of the phone call was. If people have a deadline to do something and they don’t do it then you can chase them if you have their name written down and the details of you call. In the firefighting situation that a lot of public bodies are in, it’s often the case of he who shouts loudest that wins.

Do your reading

Sometimes staff aren’t fully versed on their own policies on issues such as how they prioritise need in social care. Quoting from these policies makes people sit up and listen to what you have to say.

Don’t feel defeated

I’ve never asked a professional to do anything other than what they should be doing as part of their job. You have a right to make these requests and make sure that you and whoever you’re caring for have lives of your own and are as healthy, happy and solvent as possible!

Write down what’s worrying you or what you need to do

Put each task or worry on a big piece of paper and then put the pieces of paper in order. When my husband died I was overwhelmed with everything I needed to do both in our personal life and for the business we ran. This technique made me feel much better.

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