Helping disabled children prepare for school - A Personal Reflection by Dame Philippa Russell

Philippa RussellMy oldest son Simon is fifty in two weeks time. Half centuries are good times in which to reflect both on the past and on the future. As the parent of a son with brain damage and learning disability, I have lived through many challenges; Nurses – community and hospital based – have played a big part in my family’s life. Perhaps their biggest achievement has been to make life ‘ordinary’ for us. Many readers will know Philip Larkin’s poem to a friend’s newborn daughter. ‘Let her be ordinary’ he wrote, ‘nothing extraordinary’. We live in an outcome-focussed society but for many families, being ‘ordinary’ seems an unattainable ambition.

Simon’s life has been both ordinary and extraordinary. I remember the school nurse who gently encouraged us to ‘let go’ and allow Simon to make the first walk outside on his own. I never told her that I tracked him from tree to tree but equally Simon would never have gone down the garden path on his own without her encouragement! I remember the community nurse who, amongst all the busy professionals, had time to sit down and ask me ‘how are you?’ And I value the community learning disability nurse, the district nurse and other nurses who now play such a big part in our lives. Perhaps their greatest gift to us is that they listened to and respected both my son and the rest of the family and they saw us in, and understood, own, particular brand of family life.

On Wednesday I was privileged to meet an impressive group of school and other community nurses at an event held by the QNI to raise the profile of ‘nurse champions’ for young carers. I was hugely impressed by the level of commitment and the sheer creativity that these ‘nurse champions’ were bringing to their work with young carers.

As Chair of the Standing Commission on Carers, I am very well aware of the roles, responsibilities and sometimes the overwhelming responsibilities that over 166,000 young carers take on every day. Too often they are indeed a ‘hidden army’ and I remember with sadness a young carer at an event in the North East of the country who told me that ‘he hadn’t had a childhood, and he wished he had’. But ‘Michael’ (not his real name) went on to say that he had found a real advocate in his school nurse. ‘She’s the one person who listens to me about Mum’ he said, ‘I can tell her anything and she really respects me. I think we are good together’.

He and his school nurse had changed the culture of a school where bullying was rife. ‘Michael’, caring for a mother with mental health and substance misuse problems, had been bullied; missed homework targets and felt totally isolated from his peers. With the school nurse, he had established a young carers group in the school; together with confidential ‘let’s talk’ sessions for young carers and the opportunity to talk to his class and later the whole school about what caring meant for him. The bullying had stopped and he was planning his own future with confidence. As he said, ‘Together we changed the world.’

The world has moved on in my son’s half century and I think we need a new form of leadership to address demographic change and rapidly changing expectations. Today, at the launch of CQC’s annual report on ‘The State of Health Care and Adult Social Care in England,' David Behan talked about ‘distributive leadership’, a new form of leadership from within our health and social care systems. As we move to more inclusive, personalised and better integrated support for disabled people like my son and for young carers, I hope and believe that community nurses can and should take on this new ‘distributive leadership’ role. As carers, our health and well-being depends on it.

Dame Philippa Russell is Chair of the Standing Commission on Carers

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