I remember sitting down on holiday and having this overwhelming feeling. It felt like I had a heavy backpack on, and had just taken it off for a very brief moment. It then occurred to me that I had carried this backpack continually and it was very hard to remember a time when I didn’t carry it.
My backpack is the weight of carrying my son’s additional needs. I carry worry, stress, anxiety, guilt, nervousness, upset, trauma, all of his history, and I am his advocate. I actually cannot and would not ever want to put down the backpack, as it is part of my inner core now and part of who I am. I love my son endlessly.
Many families in Somerset and indeed across the UK carry backpacks, and, added to the weight of the backpack, is the struggle to get what they need and what they are entitled to. I feel injustice daily for families, I have felt the injustice myself, and some days it can feel very real and very raw.
It’s hard for families to find out what kind of support they can get and are entitled to. It can seem like a maze of red tape, bureaucracy and jargon, which is hard to navigate and understand.
Families can end up feeling alone, stressed and helpless. The word ‘no’ is the expected response.
So who am I? Who is this mum carrying the backpack? I am mum to Jude and Finn. Jude is an almost 10-year old boy with learning disabilities, autism, and epilepsy, who is registered blind. My son’s behaviour can be challenging and I therefore have a real passion and interest to understand as much as I can about Visual Processing Disorder and challenging behaviour. I am very keen to learn as much as I can regarding how the correct environment can really support an individual to lead to a happy and fulfilling life.
I Joined Discovery as a Family Consultant in September, moving across from my previous role with the HFT Family Carer Support Service, where I supported families in advocating their rights. I have a really good understanding of the Care Act so made sure that families knew what they needed to know to get the right amount of support.
I built some wonderful relationships with families and understood the range of challenges and difficulties they were facing. I have also worked as Trustee and Chair for various charities, all of which means I have a lot of experience, knowledge and compassion to bring to my new role for Discovery.
Amanda Watson is the other Family Consultant, who has been advising Discovery for two years. We will be working together on a job share, helping families to get the support they need and to give them more of a voice. Our work will not be a tick box exercise as we really want to work in partnership with families.
Listening to families gives Discovery the best chance of getting things right for the people we support. One of the first projects Amanda and I have organised is a family working group called the ‘Family Path’, bringing together families and colleagues from Discovery. The first session was attended by 17 people including the Discovery Managing Director, Luke Joy-Smith, Board members and families of the people we support.
The original 17 attendees have now formed a working group, but we would welcome new members if any other families are interested. The group will meet every six weeks for the foreseeable future, for at least 12 months. We will publish regular updates on the Discovery website and in letters from Luke. If you’d like to be involved, please contact us on 0300 303 9013.