Young people
“When the hospice nurses came out to see me and my other sisters. They brought loads of gifts and explained what the hospice is and what the nursing team do for myself and what the team do for my other two sisters, and what they do for the parents as well…And they came all the way from Barnstaple!”
Parent carers
“There’s so many good people in Devon that want to get it right”
“My daughter’s primary school are very kind and work hard at a good relationship with us. I have disabilities myself and they are very understanding of the impact on my mental health as well as my child’s….”
Schools and settings
“Luckily, I’m a SENDCo across two small schools and I have the time available to allow a parent a meeting for an hour because they need to talk things through, and they want to sit with you”
Health
“…It’s about introduction. Always saying your name and what your role is so that people are really clear. Having badges to identify our roles so that people know, you know, whether they’re being seen by a physio, an assistant, or whoever. We get lots of lovely feedback…not just for physio, but our Children and Family Health, Devon Service…we get lots of compliments every month about how friendly our staff are…”
Is valued…
- Individuals who show kindness and empathy ******** (8)
- Building relationships ******* (7)
- Recognising volunteer efforts – giving tangible rewards ***
- Investing in staff wellbeing ***
- When practitioners prepare in advance prior to involvement and take the time to get to know you (be creative) **
- When there is a welcoming culture *
The narratives emphasised the importance of relationships and relational practice. Specific services across Education, Health and Care, schools, colleges and people were mentioned, particularly in the survey.
Needs to be better…
- Navigating systems can create trauma, hardship and mental health issues for young people and families ********************(20)
- More work is needed on transitions, for example to secondary school, for neurodiverse young people and to adult services ******* (7)
- Some families and young people say they have never experienced welcome and care ***
- Practices can feel combative and blaming ***
The experience of school has impacted significantly on some children and young people’s mental health and their ability to attend. There seem to be misunderstandings of masking and mental health needs which get in the way of offering support early, resulting in escalating difficulties sometimes leading to self-harm and suicide attempts, and families trying to respond feeling isolated with little access to support.
Families talked to us about waiting and then having to repeat painful stories, sometimes feeling they are not believed. There were frustrations about errors that have occurred, long waits for specialist involvement, assessments, support and the right treatment. There seems to be an overly lengthy referral process with other information sometimes being requested multiple times when life is hard enough; it was suggested that it would be helpful to have a key worker to offer support in this.
More care is needed in the use of language within communications, both spoken and written.
Parent/carers describe the impact of their experiences and/or caring responsibilities on their wellbeing and capacity to work, which can result in poverty and hardship, and impact siblings, resulting in a need for more support from services.
All of these issues erode trust.
Comments added at the Cornerstones event
- The importance of listening to listen, not necessarily to respond *
- Being pro-active rather than reactive – linked to common themes *
- Parent carers have names and are professionals too
- There are too many automated responses – talk to us!
- The ‘system’ needs to have our children’s backs
- Stop the blaming that takes place between the LA and schools
- Remember children who have disabilities but are not neurodiverse (for example children with a severe learning disability)
- How do we include children and young people who are missing in education, without a voice?
- It would be helpful to have specialised technology support for help with navigating systems, for example a parent carer Information Technology (IT) support line (‘Devon Wallet’) and the development of artificial intelligence (AI) for frequently asked questions (FAQs)
“We just want people to care”