Sunday, 16 December 2012

Should Parents Intervene in their Child's Medical Treatment?

Yesterday, with typical hand-clasp posture, hat on indoors and sleeves rolled up

This question ignited fierce debate when Sally Roberts ran away with her 7-year old son to prevent his radiotherapy cancer treatment for a brain tumour.

However, I believe that Sally Roberts deserves sympathy, not condemnation, especially by ill-informed people online who hadn’t read the whole story. She is obviously frightened & has her son's best interest at heart, even if she may be misguided. Having your child’s life under threat is the most terrifying prospect ever and I can see how it could temporarily unbalance your mind.

I completely understand the need for the courts to step in - parents should have a say in their children's treatment but not necessarily the final decision. I’ve often felt like running away with Chrissy to take charge of her treatment but common sense has prevailed and enabled me to take the longer view. Such an impulsive act could lose me my Deputyship, which means that I’m appointed by the courts to make decisions on Chrissy’s behalf as she lacks capacity to manage her own welfare and affairs. Ultimately, this could leave me powerless to protect her interests in future.

Having said that, I have at times taken a very strong stance over Chrissy’s medical treatment, and it has led to clashes. I know my child’s long, complex medical history better than anyone and always fight her corner if I disagree with her doctors.

I know all too well the feelings of helplessness & desperation when you fear that your child's medical treatment could be doing them more harm than good. Primal instincts take over - I made a rash decision on holiday to stop a treatment that I felt was causing ill-effects – Chrissy's antipsychotic. I held my hands up afterwards & acknowledged that it was a step too far but there had been so many bureaucratic delays over starting the process that I felt desperate. Although her clinicians put her back on the antipsychotic when she returned to the assessment and treatment unit, my actions had the desired effect - although I hadn't done it from a conscious desire to manipulate events. A tapered withdrawal process was started immediately.

Since then, Chrissy has gone from strength to strength. Re-reading my blog post from that holiday, I see that I said Chrissy’s mobility had declined with age – although she’s only 28. I was wrong. Now her meds are sorted out her agility has improved. I’m not sure why, as she's still overweight - maybe she felt dizzy or had vertigo? Her life has been transformed by these long-awaited medication changes. The high levels of self-injury and disrobing that effectively imprisoned her have now reduced so significantly that she is able to go out and about again routinely. As I write this, Chrissy is sitting contentedly next to me turning the pages of her Argos catalogue and pointing out different pictures she likes. Her concentration span and focus have improved no end and she can amuse herself quietly for long periods of time now. Her quirky personality and sense of humour has returned. She laughs, dances and sings again, and notices everything that goes on around her. Last time I blogged about how she was settled enough to cope with a four-hour drive up to Staffordshire to visit her grandma for the first time in around four years.

Chrissy still has her ups and downs, and always will, and her epilepsy is a huge concern, but she is now back to her old self. I can’t emphasise enough how changed she was while on inappropriate medication. She rejected activities that she previously enjoyed, was too unsettled and unfocused to engage in anything for any length of time, and her cognitive abilities and vocabulary had shrunk along with her quality of life. She lost her personality. We thought we had lost her.

What on earth was it like for her? The only way she could express her torment was through violent self-injurious behaviour. There were times that she missed out on weekly visits home because she was so agitated and confused that she didn’t know what was going on, and I couldn’t even get her into my car. This was completely out of character - she looks forward to her home visits all week. Her younger sister even questioned whether her life was worth living at one point because she was suffering such a continual high level of distress. Behaviours included ripping her hair out of her head, leaving her partially bald, breaking her heel by banging it on the floor, gouging and biting her skin until it bled, and sustaining a multitude of bruises, swellings and lacerations all over her body and face through punching, pinching and throwing herself around. She also lashed out at other people, which she only does on occasion when extremely distressed.

Now her hair has grown back and her body is rarely marked from self-injury. Her face has lost its haunted look.

Chrissy can’t express how she feels, and Ian and I often speculate on how she must have felt when she was so distressed on inappropriate medication. There’s nothing worse than watching your child suffer and until you are in a situation like Sally Roberts’s you can’t say what you would or wouldn't do.

I am a SWAN UK (Syndromes without a Name) blogger


  1. I think it is always an awkward situation where the communication between clinicians and parents/carers is not the best.
    I have spoken to a few different people myself about the relationship between carers and clinicians and I think there are always going to be problems when there is not a mutual appreciation of opinion and feelings.

    Often the feelings and concerns of the carer are dismissed as being irrational or over protective by clinicians but they fail to recognise that this person has been the 'expert' dealing with their patient every day. On the other hand sometimes the carer is so personally involved with their charge that they can't distance themselves to see what is ultimately the best form of treatment.

    Without a mutual agreement between all of the parties and a mutual understanding their will be no resolution and rash actions may be the result as in this case you mention.

    Personally I can fully understand why she felt the need to go to such rash actions but I cant help that feel if there had been good communication between all parties then there may have been a different result.

    Of course nobody can say how they would act until they have found themselves in a similar situation as you say.

    1. I agree Keith. Trust & communication must have broken down long before it got to this point, & I'm sure both sides played a part. God forbid any of us are ever put in that terrible position...

  2. I agree Jane, no one knows how they would behave in any given situation and our strongest urge as parents is to protect our children at all costs. The image of chrissy so distressed was very disturbing and must have been terrible to coe with. I am delighted to hear though that the medication changes are having such a positive effect. Long may it continue.

    1. Thanks LittleMamma. Yes it was very difficult - worse looking back. I think I became quite desensitised while Chrissy was suffering distress in order to deal with the situation. Then, at other times, the reality would catch me unawares & I'd find myself in bits.