“Nicci, what would you say to mothers in your position?” the journalist asks, waving a microphone in her face.
“I wouldn’t need to say anything, because they’d understand.” She replies. “Because they, like me, have spent their entire lives fighting. For money, for wheelchairs. For breathing equipment, for night-time support, for educational support...”
Discovering that your child has a serious or life-limiting condition is devastating for any family, but the additional practical and financial challenges it can bring are mountainous.
Like the family in Best Interests, many Demelza families express having to continually ‘fight’ for their child. The ongoing struggle can be both isolating and exhausting.
That’s why Demelza has a team of Family Liaison Practitioners and Transition Navigators. They can provide expert support and advice to advocate on a family’s behalf and enable that family to have a ‘voice’ when they feel unheard.
A 2019 study by Scope found that families with disabled children face an average of £581 a month of extra costs, which has only increased in recent years with the cost-of-living crisis. Additionally, many families find that with the specialist care needs and unpredictability of their child’s health, they are no longer able to work or to work the same hours as they had previously.
The financial pressures can be immense. Demelza is able to support families in identifying and applying for grants that can alleviate some of these pressures, helping with things like equipment or adaptations in the home.
Demelza also has a practical support service, offering families help from redecorating and gardening, to driving to hospice and hospital appointments.
In a 2022 Bliss survey, half of parents with a baby currently in neonatal care said that the rising cost of living was impacting their ability to pay rent, bills, or mortgage and 84% said it had impacted their ability to pay for travel to and from the hospital.
“Demelza’s practical support drivers were always ready to step up if I needed assistance getting Zelcia to the hospice, or even to a hospital appointment somewhere in London,” says Priscilla, mum to Zelcia. “The drivers were some of the nicest, most genuine people I’ve ever met and as a single parent, who often had no one else to turn to, they were a lifeline.”
Demelza Family Support staff are available to listen, to help understand the complex needs of the children we support, and to offer the right support to parents and carers as they navigate the pathways of a multitude of health, social care and educational organisations.
Demelza can also be there to help them understand the emotional and physical strain they are under. We can liaise with funeral directors, registry offices and benefits agencies when families only have the energy and space to grieve the loss of their child. Sam and Hua, parents to Henry who sadly died of acute myeloid leukaemia when he was eight years old, shared their experiences of being supported in the days following his death:
“Demelza staff were there for us the whole time, offering their quiet support. Some helped us begin to organise the avalanche of practical elements that had to be undertaken. Others, in the bereavement and care teams, simply gave us the chance to talk, about Henry and about ourselves.”
Alternatively, it may be to help families navigate the mountains of paperwork or forms that are intrinsic to the process of trying to access support and services.
Lisa is mum to Matilda, who has a rare genetic condition (one of only four diagnosed cases in the UK) that causes severe epilepsy, as well as a separate and serious heart condition. She shares what difference our family support services have made to her family as they navigate Matilda’s condition:
“Liz (Demelza Family Liaison Practitioner) has been so great. I don’t think a lot of people understand that the second something is tailored for special needs or a child with a disability, the cost just skyrockets. Liz sat down with us and figured out where we could get grant funding for different things, and she helped us fill out paperwork and get it signed off by the relevant people. It’s a massive load off our shoulders, knowing that Matilda is getting what she needs but we don’t have to foot the cost of all this specialist equipment.”
Whilst the family in Best Interests may be fictional, there are many real families in similar circumstances who can benefit from Demelza’s support, which is as unique as every family we help and designed to wrap around their specific requirements and circumstances.