Anna Walker, parent and founding partner of the Expert Parent Programme, talks about why she helped set up the programme and how she sought to empower fellow parents and carers with essential skills to navigate their way through the SEND system.
With 23 years of caring for a child with complex needs I’ve had to find my own way bouncing between health, education, social care and numerous voluntary sector services. It was after my daughter moved from children’s services to adult’s services that I realised I had become an expert in navigating my way through children’s services and now needed to start again with adults! My acquired knowledge after using children’s services had certainly helped me grasp a better understanding of how systems worked which was in itself helpful to secure support for my own daughter.
As services become much more person-centred, parents are increasingly finding that they have to be experts in everything about their child’s care.
Parenting and caring for a disabled child often helps parents develop extensive knowledge of the systems and services in place to support their child and unique skills to secure them. In my experience, developing effective strategies and techniques to get listened to, building positive partnerships with professionals by considering how you can most effectively communicate your hopes, aspirations and concerns are all really important to get the best for your child. You need these to feel confident in a world led by professionals.
So all this got me thinking. How can we harness these skills and knowledge to help other parents?
As my own disabled daughter approaches her 24th birthday and is soon to move into her own home I often find myself saying ‘If only I’d known then what I know now'. It is this sentiment that was the basis for the development of the Expert Parent Programme.
The programme’s aim is to support parents of disabled children to navigate the health system by helping them acquire and apply the skills and knowledge that they often already have or need to make the system work more effectively for their child and their family. It has been developed in partnership with a wide range of parent carers.
The privilege of working alongside such an amazing group in the development of the programme contributed to my further learning as everyone shared their knowledge, wisdom, strategies and experiences. We harnessed and packaged this up into the workshop in the hope that it would help and equip those in our footsteps with Some of the knowledge and strategies that have helped us get the right support for our children.
There is a bit of a myth out there that when parents get together they use their time to moan and criticise services.
Some professionals felt a slight nervousness at the prospect of this but I can assure them that usually when parents are offered an opportunity to attend training together they use the time incredibly effectively and come away engaged, enthused and empowered through the support and sharing that goes on in the room.
At the end of 2013, I found myself in the unique position of testing my own theory following my 16 year old son receiving a devastating diagnosis of Anorexia Nervosa requiring me once again to navigate a whole new system. CAMHS beckoned but this time I felt far more confident and clued up about the questions I needed to be asking and the key information I needed to be sharing. This time I knew I had some tricks up my sleeve to get people listening and acknowledging our fears leading to a quick referral and timely treatment.
As my son continues on his journey of recovery, it’s my hope that fellow parents could can benefit from some of our experiences and move towards more positive outcomes for their families.
Since the development of the original workshop CDC has been approached to tailor the contents towards more specific conditions or services, namely:
- For Children and Young People with ASD/LD and Challenging Behaviour
- Deaf Children ( in partnership with the NDCS)
- CAMHS services
Please do take a look at the events calendar for information on when these are taking place and I look forward to meeting more parents starting their SEND journey.