*Warning distressing content*
PACC has always championed and promoted the term ‘Parent Carer’ to highlight the additional responsibility and challenges faced by parent of children and young people who have special educational needs and/or disabilities (SEND). This recognition is important for a number reasons;
- Parent Carers have historically experienced being denied support because ‘they are parents and should therefore just look after their child like all other parents do’
- Carers support needs are recognised by the system and there are duties to consider Carers wellbeing. Parent Carers were given the same consideration through the Children and Families Act 2014
- Talking about Parent Carers helps parents of SEND children and young people understand the additional responsibilities they undertake and how that might impact them
- To promote to the SEND System the importance of providing support for Parent Carers and an understand of why support is needed.
There has been increased research on how being a Parent Carer can impact your physical and mental health and why support for this group is so important. Affinity Hub offers emotional support for parent carers of disabled children and adults. Their work suggests many Parent Carers experience traumatic events, both major events (‘Big T’ trauma) and ‘small t’ cumulative and ongoing traumas (Griffin, 2021; Emerson, 2019). For example;
- A parent whose child displays behaviours that challenge, and the parent is regularly hit at home. They feel ashamed and don’t share this with anyone. Help is not easy to access. The parents manage this by very rarely going out, they lose contact with friends and support networks.
- A parent who experienced birth trauma having to regularly attend the same hospital, or similar, where the initial trauma happened. A father who witnessed his partner and child almost dying due to birth complications. Factors such as stressful waits for appointments, witnessing invasive medical procedures or having to repeat difficult histories can retrigger the initial trauma. Even seemingly small incidents (a report being lost) take on heightened sense of ‘risk’. For some parent’s birth trauma is compounded by how information about their child’s diagnosis or prognosis has been delivered.
- A parent becomes battle weary due to the constant “fight” for services or respite and negotiating across complex appeal systems and multiple agencies. They feel ostracised, misunderstood and sometimes not believed. Sometimes the hard-fought-for service requires great effort to maintain on the part of the already exhausted parent.
You can read more about this work here
More recently Birmingham University has carried out specific research into Parent Carer suicide risk, which has inspired a short film called More than A Parent. You can find out more about the research and watch the film on a new campaign website launched by the University, where there is an option for people to send a letter to their MP, highlighting the research and calling for change.
Please note that film may be distressing for those of you who are parent carers – please only watch it if you feel able and reach out to the Samaritans on 116 123 if you need support.