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‘Put families at heart of ABI Strategy’

Calls for a family-centred approach to be taken to mapping out the future of brain injury provision



Calls have been made for family-centred care to run throughout the ABI Strategy, to support the wellbeing of survivors and their networks and to ensure best outcomes for whole families in moving forward in their lives. 

Through the publication of the eagerly-awaited ABI Strategy later this year, significant advances are set to be made in care and support for ABI survivors in the community, through the creation of a cross-departmental approach to better support the needs of people living with brain injury. 

But while the strategy will concentrate on the needs of the survivors, it is essential that provision is also made for wider families and support networks, to ensure it has the maximum impact, says Anchor Point, a special interest group dedicated to promoting family-centred approach to brain injury. 

Anchor Point contributed to the Call for Evidence for the ABI Strategy – led by Sir Chris Bryant MP, a prominent campaigner on brain injury and chair of the All Party Parliamentary Group on ABI, whose Private Members Bill led to the Government giving the go-ahead for the Strategy – through compiling research, family member contributions and findings from its groups. 

“We are looking for family to be a core thread throughout the whole document,” Dr Charlie Whiffin, chair of Anchor Point, tells NR Times. 

“We’d really like to see family-centred care featuring, because if everything is focused on person-centred care, I think in this field it misses the point and loses the focus on the integral place that family members occupy in this space. 

“If you don’t start from a family-centred position, then you’re already lost because you’re a step behind. You need to put these approaches right at the centre of everything, so that you’re recognising that the patient is part of a network – and that network has to be self sustaining. 

“I was speaking to someone recently who told me families in their area are waiting a year for community rehab, and that’s terrifying. We need to make whole families a priority.”

Dr Whiffin highlights the need for the wellbeing of families to be safeguarded, as well as supporting them in their role in caring for their loved one. 

“I’d also really like to see family member needs accounted for and advocated for in their own right,” she says. 

“So not just that we need to help them so that they can help the person with brain injury, but actually we need to help them because they may be severely traumatised themselves, or may already live with significant mental health or physical problems themselves. 

“If we look at it on a human level, then we need to be extending the support to families for this reason too.”

As well as its contribution to the ABI Strategy, Anchor Point has assembled a group of professionals within the field of brain injury and neuro-rehab, alongside family members, to make change to the current situation through focusing on the family RIPPLES: research, information, people, lives, education, and support.

Through capitalising on the expert knowledge and experience of the group, long-term change can be influenced for the benefit of families, says Dr Whiffin. 

“We are all strategically placed within the landscape of ABI, whether we are senior academics, clinicians, family members themselves. And we all want to use our position to influence change and to influence others, to drive change within this landscape,” she says.

“We hope that in this way, we can maximise the focus on families and highlight the great need for change to happen.”