My little girl with the big voice

Pauline shares her experience as the mum and carer of her daughter and what self management means to her.

In 2010 I gave birth 9 weeks early to my beautiful daughter, Caitlin.  We were catapulted into a life I had never considered when pregnant and, I ashamedly admit, had pitied when I saw out in the community. My daughter had brain damage; I had a disabled daughter now.  I was told to enjoy what I did have as she would not achieve much.

Such a bleak picture was painted for us at the start by NHS staff.  After 200 appointments in 2 years, my mental health deteriorating and my daughter so anxious at the mere age of 2 I had to do something!  With the support of my parents I used the little voice I had left to speak for my child and say enough is enough.  We simply had no life.

I began to find out about self management and educated myself for both of us; we needed a shift in the culture within the NHS.  That shift had to be Caitlin’s voice being heard and healthcare professionals actively listening and not treating Caitlin like a textbook case because my daughter is her own person.  At appointments NHS staff would not address Caitlin and would do their job but not communicate.  This hit me hard, this hit my daughter hard, and this I realised was her human rights simply not being met.  What was I to do?

My best support and what I needed to maintain my sanity was education, courses, communication, raw and emotional honesty.  I signed up to courses; I watched my daughter and learned from her.  Caitlin has been my best teacher, the instigator for my light bulb moments and my catalyst.

When I got Caitlin’s Co-ordinated Support Plan I realised that it spoke about Caitlin’s needs but not Caitlin the person, my girl’s voice was missing from a legal document about her.  This fuelled me to support her to have her voice heard.  For me and many others who are carers this is the vital piece missing from appointments, our loved ones voices being heard.

By the time I had reached the Head of Specialist Children’s Services at NHSGGC I was exasperated.  I had been through a poor meeting with education, there was conflict over wording of the document and I was ready for a fight.  I didn’t want to fight; I just wanted my daughter to be listened to.  For that reason I took my 7 year old child to this important meeting.

For me this was a gamble as Caitlin is fully aware of what is being said about her, I had never met this professional before and didn’t know how he would react to a mother bringing her child to a meeting and expecting him to listen to her which takes time for her to get her voice going.

I was on edge and he knew it but what Caitlin and I were presented with was not a professional in a senior position but a human being who looked at my daughter, who actually addressed her and who listened.  We had compassion, we had understanding and we had raw, honest communication.  For once I was not made to feel like an annoying parent, I felt listened to and I never felt like we were hurried along. 

Significantly, the result of this positive meeting led to Caitlin’s voice being heard and my daughter having a legal document that outlines Caitlin the person, her likes/dislikes and her healthcare needs as well as her options and choices.  I saw a shift that day and I respect that because when I see it at a senior level I know there is hope for it to flow down the chain.  This situation left me feeling positive about the future of my little girl with the big voice being heard.

To conclude, reflecting on our lives I believe that self management works best when it is person centred and not tokenistic.  We need to build the confidence in our loved ones but also in each other as carers and human beings so that the voice of the lived experience is heard to truly influence a genuine change and shift in our culture and discourse.

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