Storytime

A story to ponder when thinking about consultations.

Once upon a time there was a mother who had a severely disabled son. He was 12 years old but unable to do anything for himself. They were in receipt of support services through their local social service community care team.

One day she received a letter saying that as of the first of the next month they would have a cut in these services due to a cut in funding from the government. She was invited to a meeting at her local Town Hall where the Director of the Social Services and the Senior community care manager would be present to answer questions. This consultation was an opportunity for service users to contribute to the direction of the service for the future.

Her first thought was "What a load of trollop. This happening to me now and anyway their minds are made up already. What a waste of time and money". "They don't care about me and my son whatever they say".

All sorts of emotions began to well up. Hopelessness, fear, money worries, despair, and finally real anger. "What do they really know about me, and what do they really think is important to us as a family". "My son is a human being, he has rights, as do I." "I shall attend their meeting, I shall speak from my heart and I shall also write to my MP".

In the night - sleepless as usual, she had a light bulb idea. "These high ups have no idea what it is like - they make decisions and forget who is affected by them. I am going to get up early, get my son ready for the day, get us both into the car and drive to the main offices of Social Care. I will go and see them face to face"

In the morning she followed her plan - a 5am wake up, 2 hours to get them both ready and another hour to have breakfast and get them into the car. Had she got everything? Wheelchair, nappies, mobile phone, drinks, lunch. Petrol in the car? Oh she was so tired already, but it must be done.

An hour later she arrived, unpacked the car, taking all the essentials, got her son into his wheelchair and entered the foyer. The receptionist said that the Director was in a meeting. She would wait. And wait. And wait. Finally her patience ran out. She bundled them into the lift, found the Directors office - knocked but there was no answer.

Now what. So determined was this mother that she continued to wait. Eventually the Director arrived. Surprised, he invited her into his office. She outlined her situation, her concerns and fears. She introduced her son and explained his problems.

The Director was thoughtful. "You know" he said, "I have never met anyone who has a real disability and I have never really talked to someone caring for someone like you son." He paused, "I am humbled and ashamed to say this and I promise to personally investigate your situation and what we can do to help you and the many others in your situation. I would like you to advise me what to do from your experience."

The mother replied "Perhaps now you know someone who is affected by your high up decisions you will consider talking properly to us before you make these decisions. Just because you hold the purse strings doesn't give you the right to think you know best". "Only someone who lives and experiences the situation day by day can make good decisions, so the next best thing is to talk to us and listen properly before making up your minds. Thank you"

The end to this story is that despite budget cuts this particular Director was able to make informed decisions because he began to understand and not assume. The mother won her fight and had the care reinstated and now feels more in control of what happens to her son.

Pie in the sky? No, a true story. Opting out if you care about something is not an option!