We love sharing good practice with you that can help both parents and professionals offer improve the lives of children with disabilities.
Andrea Selly, is the mum of twins and also a children's physiotherapist who worked in the NHS for 25 years. She's passionate about family-centred care and believes that parents really are the experts when it comes to understanding what their children need.
Today she's writing about her personal experience and the lessons she has learned about person-centred care in child services.
I’m Andrea I’m a mum of twin boys and also a children’s’ physiotherapist. I was always a motivated and committed physio, but the journey I have been on as a mum has taught me so much I have taken into my practice. The most important thing I have learnt is that mums matter.
If I want to provide great physiotherapy and make a real difference to children, I need one key value and skill. It is not specialist technical ability (hands-on magic) or vast research knowledge. Rather it is empathy and an ability to communicate.
I’d like to share with you some of our experiences. These have remained with me and guide my dos and don’ts in practice.
I was tired and anxious, I was 18 hours into a difficult twin labour, my babies heart traces were dipping and not recovering. The midwife called the registrar. Calmly, but firmly, I said, "My consultant promised if there were any concerns during labour we would proceed to C-Section. I need a C-Section."
"Okay," she exclaimed, abruptly. "But when these babies are delivered kicking and screaming, you will have had surgery for no reason." Both my boys were not breathing at birth and had to be resuscitated.
The next two days were so intensely emotional. Ethan was with me on the ward but Isaac was in special care. I remember the distress and struggle. A midwife came to my bedside with a pump. "Come on," she said. "Your baby is hungry." I felt such a failure. The C-Section and hungry baby comments caused me great distress.
What may be a throwaway comment for a member of staff can stay a lifetime with a vulnerable parent. I now always try to choose my words with care.
The boys were less than a month old and we had been home from hospital for two weeks. Ethan began crying; an odd cry that lasted all morning. I knew something was not right. By early afternoon we were at a walk-in centre from where we were blue-lighted to the children’s hospital. Ethan had sepsis.
It was terrifying. To add to the worry, the hospital would not admit Isaac. I was torn and distressed. I would not sleep at night because I wanted to watch over and feed Ethan. Joan was like an angel. She was an older auxiliary nurse who was so kind to me. She put her arm around me and said, "My love, you need to sleep."
She promised me she would be with Ethan all night, she would give him one bottle of formula and would wake me if anything changed. She reassured me that it would not put pay to my efforts to breastfeed. Joan was on for three nights and I got three precious night’s sleeps. I am eternally grateful for the kindness of Joan.
I learned that however busy I am in work, I must not lose compassion and kindness.
During Ethan’s admission, there were times when ‘huddles’ of staff stood at the bottom of the cot discussing him in hushed tones. On several occasions, they seemed to think they were speaking in medical code but I ‘got’ most of it. It was scary and isolating. By this point my usual confidence to challenge and pitch in was all gone.
I remembered this feeling to try to involve parents. What do you know and understand? Is there anything you’d like me to explain? Do you have any questions?
We were inpatients in the children’s hospital for a just over six weeks. They did eventually admit Isaac too. It astounds me looking back that they did not make a way for Isaac and my mum to stay on the premises sooner. The poor decision-making and lack of compassion further risked my health, Isaac’s health and my mum.
It is vital that services for sick or disabled children take account of the wider family.
It really bothered me that staff who had known me for weeks called me 'Mum' and not Andrea. I promised myself when I returned to work I would try to remember names. If I forgot I would get over my embarrassment and simply ask again.
Names matter, they respect a person and help build relationship.
Simplicity and reality matter
When Isaac was two, he was referred to speech therapy. After a lengthy assessment, we were given a programme of exercises to do at home. As a therapist, you would have thought I’d have been all over these, but I wasn’t. I didn’t really understand them and wasn’t sure we were doing them right. To be honest, they were low down my priority list. We were frequently rushing to hospital with Ethan who was picking up infections and struggling with breathing difficulties. Complex sound exercises for Isaac just did not seem important. I am somewhat ashamed to admit we were discharged for non-attendance.
I try to remember in practice my priority for a patient may not be a mum’s priority at that time.
Remember parents, you are vital to your child's well-being
I would like to encourage all mums and dads reading this that you are vital. Care should centre on your family as well as your child. If you would like to know more, Can Child have great work on family-centred care and a project called the ‘F’ words.
I would also like to encourage health professionals that a family-centred approach is rewarding and leads to gains for the professional as well as the family.
You can find more information and links to Can Child on my website: www.synergy-now.com