In the dictionary to ‘Speak Out’ is ‘to express one’s beliefs and opinions boldly, freely, and frankly’
Parents and carers of children with complex care needs are so often expected to speak out on their child’s behalf, be their advocate, to fight for their rights. But how easy is it to take on this role? Being thrust in to a new environment where you are expected to challenge professionals, negotiate with commissioners and challenge service providers can be extremely daunting. Throw in the fact that at this highly emotional time you are expected to remain calm and eloquent and communicate effectively when you are boiling inside, and it can all become stressful and complex.
So, what can you do to help in this situation?
Carers UK have produced a brilliant document Being Heard – a self-advocacy guide for carers which has advice to help you get prepared and get your voice heard. They have editions for England, Wales, Scotland and Northern Ireland. The Council for Disabled Children run an Expert Parent Programme designed to empower parents of disabled children and young people to become more confident and resilient when engaging with health services. It includes face-to-face training, e-modules and access to a toolkit of online resources. 92% of parents that completed the course said the training helped them understand and communicate better with health professionals. Open Learning World also offers free online courses in The Art of Effective Communication, Assertiveness Training and Building Self Confidence.
Julia Rowe, a member of our WellChild Family Tree network made some great recommendations to help empower parents when meeting with professionals:
- Always ask to be included in emails/reports
- Take a dairy so that you can check if certain tasks have been completed
- Wear a name badge so not referred to as ‘Mum’
- Look at guidance on how to write emails/letters
- Arrange for meetings to happen at your home where possible – don’t try to keep everyone happy by allowing meeting to happen on others’ terms that overstretches you.
- Keep everything in writing so you can refer back when things aren’t happening. Also makes everything transparent, and people accountable.
- Take a friend/family member with you to help you concentrate – e.g. helping with suctioning.
And, what about children and young people who struggle to get their voices and opinions heard? The Council for Disabled Children have developed children and young people’s guides to SEND reforms that include information about planning support, making decisions and appealing decisions. Get Your Rights also have a great website that clearly explains how children and young people can be involved in all decisions surrounding their care, including using the NHS and making sure you are being heard and treated with respect.
Professionals should also be encouraging children and young people to be involved in their care plans, and the Decision Making Toolkit, developed by the Department of Education and the Council for Disabled Children, focuses on supporting young people with special educational needs and disabilities to make their own decisions and to be engaged in the best interests decision making process.
If like Julia you have any top tips for how you work with professionals or handle meetings, please share in our online forum or let us know firstname.lastname@example.org