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23 December 2014

Sometimes, a simple NHS prescription form can be as potent as the medicine

Dr Phil Whitaker’s Health Matters column. 

By Phil Whitaker

Megan’s and Shaun’s daughter, Rosie, was born with severe cerebral palsy – her intellect is intact but spasticity affects her muscles, distorting her trunk and contracting her limbs and rendering her speech slow and barely comprehensible. She is wheelchair-bound and, as she has grown bigger, she has come to need hoisting in and out of her bed, her chair, the bathroom and the adapted car.

She’s intelligent, loves her tech and is acutely aware of the world beyond her home and her special school. Like most teenagers, Rosie wants to fit in with her peers and she has struggled with how profoundly her body prevents her from enjoying the kind of life she would love to be living and from belonging to a group of firm friends.

A couple of years ago, Rosie began taking out her frustration and anger on her parents, particularly on Megan – Shaun works long hours as an engineer with a top motor racing team. The relationship between mother and daughter became progressively more dysfunctional, with Megan feeling cowed by Rosie’s tirades and her aggressive non-co-operation. Practicalities and deep-seated guilt made it hard for Megan to impose effective boundaries on Rosie’s behaviour, with the result that Rosie became akin to a tyrant.

The control she was able to exert over her mother made her feel horribly insecure, so she pushed ever harder, craving a fixed boundary. Megan felt powerless to exert authority and was filled with self-loathing for the resentment she often harboured towards her daughter.

Things came to a head when Rosie started to refuse school by means of some profoundly challenging behaviour. Care fell almost entirely on Megan’s already bowed shoulders. She consulted with me about something trivial, initially presenting the same cheerful coping face that she wears when dealing with the rest of the world. But the facade soon dropped, exposing the miserable entrapment she felt and the agitated hostility that was overwhelming her. She was desperate to get out, to run away, but paralysed by guilt and obligation and fear of other people’s condemnation. Suicide was the only escape she could see and thoughts of it were increasingly preoccupying her.

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I wondered about prescribing an antidepressant but what she badly needed was respite: some time away from Rosie. Although social services were offering to support this, Shaun was implacably opposed to it, believing it would be another negative experience for Rosie.

We discussed things and I discovered that, as a child, Megan had loved holidaying with an aunt in south Wales. I opened the prescribing module on my computer and typed in: “A week’s break in Pembrokeshire, one to be taken every six to eight weeks.” I printed this out on the green NHS prescription form and told Megan to give it to Shaun and not to take no for an answer.

To my amazement, it worked. Although Shaun continued to dislike the idea, he grudgingly agreed to social services caring for Rosie to allow Megan a series of breaks. Her elderly aunt spoiled her and, for a week at a time, she drank deeply of freedom and the chance to be nurtured. She would return with her head above water and it never quite sank beneath the waves again before the next trip came around.

Although the situation still has its difficulties, Rosie eventually returned to school, Megan regained some daily “me time” and the relationship between them has gradually improved. Rosie has just had a change of social worker. In discussing needs with the new incumbent, Megan showed her the prescription from a couple of years ago. The young social worker expressed surprise that anyone could get holidays prescribed on the NHS and it tickled Megan no end to explain what it had been about. She thanked me again for writing it, because her impression was that the new social worker had also taken it very seriously and had assured her that respite care would continue to be funded. Sometimes the power of a prescription lies not just in the medicine but in the words themselves.