The Acquired Brain Injury Strategy Post 2
By Alyson Norman
As many people will already know, we here at Anchor Point are looking forward to the publication of the long-awaited ABI Government strategy. We still don’t know when this will take place, but it is anticipated before the end of the year.
So why are we so keen on having an ABI government strategy and why is it so important for families? Currently there are no specific and clear pathways for individuals who have experienced an Acquired Brain Injury (ABI) within the UK. Some individuals who are very seriously injured may get transported to a major trauma centre on injury, whereas others are more likely to be taken to their local hospital where specialist care is limited. Furthermore, there are individuals who may not even be admitted to hospital or are admitted and discharged shortly after with little or no support or intervention. Access to neurorehabilitation is patchy across the UK, with many individuals not managing to gain access to much-needed inpatient support. Discharge from hospital can also vary depending on postcode, with some experiencing a stable and well-planned discharge to community services and others being discharged with no real community support at all.
Once individuals reach the community setting, access to services becomes even more problematic with many individuals across the UK reporting having difficulties accessing vital rehabilitation services like physiotherapy, speech and language therapy or psychological support, and not getting suitable support with applying for welfare, return to work benefits, or access to social care packages.
This paints a clear picture of need for an ABI Strategy that helps to address these inequalities and gaps in service provision over time. But what about families, how would a strategy be useful for them?
In the hospital setting, some families receive support and information about their loved ones’ condition from healthcare professionals. Others, however, tell us that they aren’t given this basic information and little attention is given to their own emotional needs during this traumatic time. During rehabilitation treatment, families are often not included in these processes. This means that they have little understanding about the care needs of their loved one or the sorts of support they may need in the future. On discharge, medical professionals regularly make decisions about an individual’s fitness for discharge without any consideration of a family’s ability to support the care needs of that individual. Families aren’t given information about the long-term picture of life after brain injury. This means they are expected to learn from scratch what they can expect from life with their loved one. They aren’t given information about support services, welfare etc meaning that they often have to carry the burden of having to support their loved one through these processes. Professionals also fail to provide information about their own rights in terms of things like carer’s assessments and welfare benefits and, again, little or no recognition is made of the psychological impact of this injury on family members. So, in short, family members are invisible within the process of care after brain injury even though they are an essential linchpin.
Our vision for the ABI strategy is that family needs will be specifically outlined, and consideration will be given to how these family needs can be met by health and social care professionals. We want to see consideration of how family’s mental health and wellbeing will be protected and how their financial security is maintained. We don’t expect these things to change overnight but we want recognition from the Government that failing to address these issues has a huge impact on society more generally. It impacts the long-term of individuals with ABI, it impacts the economy through issues such as family members having to give up work or go part time, and it puts further pressure on our health and social care services as family members buckle under the pressure of providing support to their loved ones without aid.
As yet, we do not know what to expect from the ABI strategy, but we are clear on the importance of such a strategy document for family members. The hope now is that the Government also appreciates its importance and takes this opportunity to push forward an agenda for change for both individuals with ABI and their families.