Powered by the people who have lived it

[Posted on 10th January 2023 by Helen Minnis]

In the last seven months, I have learned more than ever about how difficulties in families can quickly turn into disasters – and how the simplest interventions, offered with respect, can sometimes prevent those disasters.

With Matt Forde, Partnerships and Development Director at NSPCC (a leading UK children’s charity), I am co-leading a new study called Partnership for Change based in Glasgow and London. We are coproducing a new infant mental health service for parents of young children who have been allocated a social worker, but who do not have an identified child protection concern. Ourcoproduction partners are, themselves, parents of children with a social worker. NSPCC has a vision that “together, we can stop child abuse and neglect”  Matt and I have been working for years together on this mission, including on a study evaluating infant mental health services in the UK children’s social care system . We have learned a lot together since we first met in 2009. 

But I think it is fair to say that Matt and I started on our steepest learning curve when we began working with Sharon Graham. Sharon is a researcher at the University of Glasgow, and she is also coinvestigator and Patient and Public lead for Partnership for Change. Several years ago, she had the terrible experience of having her little boy adopted in the context of her own addictions. Before Sharon developed addictions, she had successfully brought up two daughters and, now that her boy is older, she is back in touch with him and his adoptive parents. Since Sharon started her recovery journey more than 7 years ago, she has worked with countless struggling families in an advocacy and support role, so she has a wealth of experience to offer. With colleagues from social work and infant mental health, and with two groups of Parent Collaborators – one in Glasgow and one in London – we are coproducing a new infant mental health service called “Infant Parent Support (IPS)”. The two teams (in Glasgow and London) are already experienced in offering evidence-based relationship-focused interventions to struggling families.  We are introducing two new aspects to the IPS teams – neurodevelopment awareness, and poverty awareness.

Readers of this blog will probably understand why we want the IPS teams to be aware of neurodevelopmental conditions like ADHD, Autism and intellectual disabilities: we already know that children who have experienced adversity in early life are more likely to have these conditions , and that having these conditions increases their risk of abuse and neglect. Because neurodevelopmental conditions run in families, it is crucial to think about both parents’ and children’s neurodevelopmental profile, because understanding how neurodevelopment impacts parenting can help us support families better . Parent collaborators have welcomed this new lens through which to think about the challenges they have encountered: many have children with diagnoses or being assessed for neurodevelopmental conditions, and they are well aware of the challenges these conditions can introduce to family life.  

For clinicians and social workers in the team, the steepest learning curve has been poverty awareness. If you have a decent income, it is hard to imagine all the myriad ways in which a lack of resources can prevent families taking sensible next steps to address problems. For example, how can a parent get their child to a health appointment without the bus fare?

One of our Parent Collaborators (let’s call her Lucy) gave us a painful example of how poverty and neurodevelopment can interact. Lucy is an experienced nurse, by profession.  Although she has a diagnosis of autism, this did not cause her major problems in her life - she was happily married and loved her job. Then she had a daughter with autism who was more severely impaired than she was. She had to give up her job to care for her daughter, and the family fell into poverty. Lucy vividly described how, after her daughter had repeatedly gone to school in a worn school uniform and ill-fitting shoes, a social worker had made a visit to the home.  The social worker was horrified that the couple did not have a bed to sleep in, only a mattress on the floor. When the social worker looked in the fridge and found little food, she decided that there was child neglect.  If the social worker had asked Lucy, she would have told the her that they didn’t have money for a parental bed, and that they were happy sleeping on the floor since they had decided to spend their scare resources on a lovely bed for their daughter. They had always made sure their daughter had enough nutritious food to eat, sometimes going without themselves. Sadly, the social worker’s observations catapulted the family into the child protection system.

Sharon, Matt and I believe that parents are an invisible force that we, as clinicians and practitioners, usually ignore.

Yet this amazing parent-power could help us shape our services for the better.  Sharon and I interviewed each other about this recently for an NSPCC conference. In the video (which you can watch in full here ), Sharon says:

“This can happen to anybody at any time…and these people who sit in judgement – you just don’t know when it could be you”.

For me, working with Sharon and her Parent Collaborator colleagues has helped me realise how new services should focus more on setting the agenda collaboratively with parents and how, often, fixing the small things first might make next steps much easier. As I said to Sharon in our interview:

“There are so many ways into this, and there are so many blindingly obvious ways of helping that just haven’t occurred to us”

Matt and I – as well as many of our colleagues – are on an incredibly steep learning curve. Luckily, we are in the good hands of parents who often wish they could wind the clock back, and who are willing and able to guide us to offer families better services in the future. We will be moving into the randomised controlled trial phase of Partnership for Change early next year, to examine whether IPS teams can work in practice. Let’s hope we can bring this new service into reality, powered by high-octane parental fuel.

Our motto is that Partnership for Change is “powered by the people who have lived it”.

[This is a blog. The purpose of the blog is to provide information and raise awareness concerning important issues. All views and opinions expressed are those of the writer and not necessarily shared by the GNC.]