Anchor Point – increasing support for families affected by ABI
A national initiative has been launched to help increase the support, advice and resources for families affected by acquired brain injury (ABI).
Anchor Point has been created to raise awareness of the needs of families of people with a brain injury, identify their unmet needs and deliver research, information and education required to make a positive difference.
The Special Interest Group (SIG) unites professionals working in healthcare and academia across the country and has ambitious long-term plans about how to change the reality for the family support network whose lives are blown apart in the wake of a brain injury to their loved one.
Among the initiatives Anchor Point hopes to introduce are the creation of a resource of patient stories to help and inspire others, a buddy mentoring scheme for families to give peer to peer support, and the creation of an education and resource pack to collate all of the resources a family affected by ABI may need.
Anchor Point has been created by Dr Charlotte (Charlie) Whiffin, an adult nurse and senior lecturer at the University of Derby, after realising the significant gap in provision.
“I did my PhD ten years ago and looked at the family experience of head injury and realised that nothing had really changed since then. There is some very good work being done where the primary concern is the injured person, but there is a need for something where the primary interest is the family,” Dr Whiffin tells NR Times.
“It’s a really impossible situation for family members, and nothing is truly going to prepare them for their loved one being discharged from hospital, but at the minute it feels like an abyss for many of these families – it doesn’t have to be this hard. There needs to be more scaffolding around them, so instead of the freefall down the hole, there is a ladder for them to get back up.
“Over the past ten years an increasing number of studies have looked at how family members are affected by the impact of acquired brain injury and their crucial role in neurorehabilitation and long-term support. It is now well recognised that the experience of family members can be complex and enduring.
“Brain injury has a far-reaching impact on the family. The injury can be a life-long condition and for family members to provide the best possible care and support, they need access to accurate information. It is apparent that as health and social care professionals, we need to work together to pool our knowledge and experiences and improve the support available to families.”
Anchor Point is aiming to bring about change through its working groups focusing on family RIPPLES – resources, information, people, policy, life, education and support – which will bring together professionals to look at the improvements that need to be made.
“We will look around the country and find where things are being done really well, we will map the pockets of excellent practice and want to work really closely with organisations to replicate that,” says Dr Whiffin.
“We plan to grow organically and our aims will evolve every year in terms of what more we feel is needed. I’d love to create a resource to collate patient stories which cover the different types of brain injury and the different stages – the impact at one month will be very different to two years.
“It’s also love to have a mentoring scheme to create support between families, where you can have a safe space to express how you feel to someone else who understands without judgement.
While there may be other people outside of the family in the normal reliable support network, the impact of brain injury means that often doesn’t work anymore, so peer to peer support is very important.
“Our ambitions for this are really big but are staggered across a number of years. The idea originated in Derby but we now have a national focus and would love to look internationally at some point – there is very good practice in Australia and America, which is the long-term goal, and there is particularly scope for international collaboration on research.
“But for now, we are focusing our efforts here and hope to make a difference to the lives of families affected by ABI.”
Anchor Point is being supported by UK Acquired Brain Injury Forum, which is also hosting its website.
“We are delighted to work with Anchor Point to provide a much-needed service to families affected by brain injury – we know just how vital a role families can play in the on-going support and care of individuals with an acquired brain injury,” says Chloe Hayward, executive director of UKABIF.
“People can join Anchor Point via our website. Through active participation of family members and health care professionals it will create a space where people with different knowledge and experiences can connect to work together to research, contribute, inform and improve service provision.”
For more information about Anchor Point, visit its website here or email anchorpoint@ukabif.org.uk
