Across the UK, thousands of parents, siblings and carers are delivering high levels of medical care to their children at home. For many, the physical, emotional and financial strain is unseen, unrecognised and often misunderstood.
#notanurse_but gives parents a voice and aims to shine a light on the reality of life behind closed doors for these families. Its goal is to gather evidence and highlight the massive gaps in support to decision makers.
#notanurse_but is campaigning for a reality where at the start of every day, parents and carers have:
- the services and support staff that are vital in helping them to care for their child
- the skills, confidence and information to provide the care their child needs 24/7
- the emotional support to help them when times get tough.
"For me the biggest achievement so far is seeing so many families coming forward and sharing their experiences. We are not nurses, but do whatever it takes to keep our children safe and well at home"
#notanurse_but began by supporting a group of parents in sharing their personal stories via a series of powerful video diaries. The films have now been viewed over 120,000 times and have gained widespread media coverage, helping us to connect with more families across the UK.
The video diaries cover a range of issues faced by parent’s caring for their child at home, including the need to provide invasive procedures, being their child’s advocate, making difficult decisions, the availability of care and support, and the impact on siblings. They give a real insight into their day to day lives and the challenges they often face.
Watch all the video diaries in the playlists below.
Leanne’s story – 14 videos
Jill’s story – eight videos
Faith’s story – four videos
Hayley’s story – two videos
Care at home
#notanurse_but aims to ensure that a consistent level of care and support is available to parents 24/7 so that they can care for their child with exceptional health needs at home.
Challenges that parents and carers face are often linked to the availability and competency of paid carers; the accountability of private agencies; the lack of provision and breakdowns in packages of care; and the need for more information and consistency in criteria, eligibility and assessment.
#notanurse_but coffee mornings took place across the UK from 2015 to 2018, enabling parents and carers to meet up and share their experiences. Discussions at the coffee mornings highlighted the impact that the right support can have on families, but also the significant gaps in support available to families caring for children with exceptional health needs. They also provided an opportunity for professionals working with or on behalf of families to come along to find out more about the campaign and how they can support us.
Due to social distancing measures put in place because of the Covid-19 pandemic, in person coffee mornings have since stopped. However, the WellChild Family Tree continues to run comparable virtual events for parents and carers. Find out more about our events and how you can join in here >>