Campaigns and Awareness
The needs of the child and their family/carers are at the heart of Newlife. Daily we hear from families who are dedicated, determined and resourceful, but still the difficulties they face pose significant challenges to their lives. They support their child with outstanding levels of care, but alongside this commitment they have to fight to get the help they need. They tell us ‘everything is a struggle’ because of lack of support and recognition of their child’s needs. Every parent is doing the best they can for their child. A child who faces disability or a terminal condition often relies on his or her parents/carers for higher levels of assistance and for daily healthcare help. They often rely on their family for longer than children without a disability. All this pressure on a daily basis.
That’s why the Newlife Nurses are, as one mother wrote “ ...Brilliant, just to be able to call the Nurses is a relief. At last we have someone batting in our corner, someone who understands the systems and can see me through this journey”
In doing this vital job, we learn through our Nurses about the real life needs of real families. This information guides our dedicated and determined awareness and campaigning activities. We receive no Government funds and so we are truly independent and can speak freely with the real voices of real families, ordinary people who tell it like it really is.
When we heard from families that they were having trouble accessing services, we campaigned to understand why so few had a key worker/social worker. This awareness activity continues.
When we heard of the isolation of families, we widened our resources to ensure we had access to locals services, groups and organisations in local areas where we could link families to support close to home – This campaign to put people in touch with services and contacts continues and we hope to fund a developed service ensuring families are ‘plugged in’ to all the services on offer locally and nationally.
When we heard the law on car seats for all children was changing and that families couldn’t afford the high specifications for the specialist car seats they needed for their disabled child to comply with the law, we campaigned for these to become classed as “essential equipment” supplied by statutory services. This campaign continues.
When we heard that families have difficulty in getting people to understand their child’s conditions and that this isolates and segregates them, we formed a working partnership with families to highlight conditions through the media so people will be more understanding of the needs and behaviours of disabled and terminally ill children. This awareness activity continues.
When we heard that thousands of families and children were being denied and facing lengthy waits to get vital equipment we not only launched our equipment grants service to help out the most urgent cases, but we also launched a national campaign called – ‘it’s not too much to ask – that disabled children get the equipment they need’. This has had Government and statutory bodies responding and taking action. This national campaign continues.
When we heard that children’s rights to essential equipment were being compromised, we commissioned a barrister to give a legal opinion. Our ‘the law protects’ activity informs people of their rights. This awareness activity continues.
When we heard that statutory services had a responsibility, defined in law to provide equipment to disabled children we began our equipment intervention programme and began to analyse all applications for equipment grants, challenging the responsible local body to fulfil these requirements as a primary responsibility. If they refuse then Newlife Nurses will consider the applications, but along the way we are constantly challenging the limiting criteria and unfair rationing to affect policy long-term in those areas. This intervention awareness activity continues.
We recognise the excellent work done at face to face level by many thousands of health, social care and other professionals. Many work with us to help families and their children and in carrying out their dedicated roles, they too often struggle to get the best for those in their care. Our ‘let them do their job’ awareness activity highlights the important role that (our often undervalued) professionals have in the lives of disabled families and children. It supports them to overcome the daily difficulties they face, from bureaucracy to rationing, which impacts on their ability to do their job. This awareness activity continues
The needs of the child and their family/carers are at the heart of Newlife. The voices of families are reflected in our campaigns. We will continue to voice the real life experiences of real families and their children.
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