“There’s No Roadmap!” Journey to Family Care

Sarah Ambe

By Sarah Ambe

I distinctly remember back in 2014, a conversation at an event, with a Child and Adolescent Mental Health Commissioner, just after the launch of the Children’s and Families’ Act 2014. The conversation was along the lines of that the Act promised to deliver more support for the families of children and young people who do not get enough support each and every day with short breaks and respite. The commissioner asked me, as a parent carer, rather than a professional, what I would do if I was commissioning services. My answer was, “look after the parents first, the next of kin, because if they don’t get enough opportunity to be strong for their child, then the whole thing can be unbalanced and fall over.”

the benefits of live in carer include

It can be a difficult, vicious circle, and very isolating. Caring can affect a carer’s emotional wellbeing, and they are more likely to experience stress, anxiety, and depression than non-carers. A Carer’s UK study in 2015 mentioned that 84% of parent carers feel more stressed than non carers. Whether caring for a very sick child with life limiting prognosis, or a child that is displaying violent challenging behaviour, either of these are extreme stressors that will take us to the edge of our mental wellbeing, everyone’s caring journey is unique and carries its own challenges. My eldest was diagnosed with Dyspraxia in 2005 when she was 7 years old, and we were fortunate to have someone explain how to work together with occupational therapy to ensure we had the right input to support her. It was not easy at school, mathematics and science areas where support fell short, and school labelled her a “troublemaker” rather than someone who needed more help in those areas. Anyone who has worked with a family who has a disabled child understands that every single person has unique individual needs, and to break the needs down into a “social prescription” of need can help that parent or child’s journey. Imagine also being a hospital inpatient for 25 years sectioned, and wishing to return to a home that that person has not seen for all that time, how can we enable someone to pick up a meaningful life again?

Without being political, local authority and central government budgets have been squeezed when it comes to support for families and siblings of disabled children and adults. Parents never get a roadmap either of knowing what their rights are unless they seek it out and do lots of research. At Catalyst Care Group across our Communities brands of Leaf Complex Care, Nurseline Community Services and Unique Community Services, we work support our Registered Managers with a Family Relationship Manager who does a lot of the day-to-day support, care plans and liaison with the clinicians who support the service user. However, when I joined Catalyst over 4 months’ ago, we realised that there was a need to do more to support families. That is when we decided to create a role for a Family Care Navigator.

Fast forward over 7 years and a pandemic later, parents and families have had to move to a more virtual world of support access, where their needs are real and tangible every day. They cannot virtually care for their children, and their need for support is greater than ever. During therapeutic work in advocacy, advice, and support, I would often ask a parent, “when did you last have a date night, or did something for yourself?” The answers were usually accompanied with a snort or shrugging of the shoulders. Self-care is something that we parent carers often have last on a very long list of tasks that must be completed for our child every day.

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Vanessa joined us in July 2021 to support more families more holistically with a 360 wraparound of services that we can support and signpost to. This includes benefits, accommodation/housing, emotional, social and access to further support, whether that is access to activities, short breaks, or even advocating on behalf of a family to gain further support or interventions for the individual or wider family group. This is a journey we are excited to be on in partnership with our families, perhaps with training and development for parents to be able to advocate for their own needs, looking what a longer-term picture might look like for them, access to education, training, or work, enabling a brighter future that does not include just caring. I have always believed in the mantra “knowledge is power!” and that is true of my own parent carer journey, it has equipped me for the career that I love and chose, to help support other people to live their best lives.

To continue the conversation or to find out more, please get in touch!