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Understanding the complexity of ABI

Acquired Brain Injury (ABI) is an extremely complex, multi-faceted condition that can vary widely in how it presents from individual to individual.  It is also a long term condition for many (often life-long) that requires ongoing specialist support over time.

For many people with ABI, there will be no physical indicators of impairment, but some may experience a range of physical difficulties including ‘loss of co-ordination, muscle rigidity, paralysis, epilepsy, difficulty in speaking, loss of sight, smell or taste, fatigue, and sexual problems’.  ABI may also cause cognitive difficulties such as problems with memory and reduced speed of information processing by the brain and/or executive functioning. Executive functioning may impact on many areas of daily life such as; ‘planning and organisation; flexible thinking; monitoring performance; multi-tasking; solving unusual problems; self-awareness; learning rules; social behaviour; making decisions; motivation; initiating appropriate behaviour; inhibiting inappropriate behaviour; controlling emotions; concentrating and taking in information’ (Headway, 2014b).

In addition to these difficulties, people with ABI are often noted to have a ‘changed personality’. Loss of capacity for empathy, increased egocentricity, blunted emotional responses and emotional instability. The above difficulties are often further compounded by lack of insight on the part of the person with ABI; that is to say, they remain partially or wholly unaware of their changed abilities and emotional responses.

It is this complexity that sets those affected by ABI apart from people with other types of cognitive impairment: unlike learning disabilities, ABI does not necessarily affect intellectual ability; unlike mental health difficulties, ABI is permanent; unlike dementia, ABI is—or becomes in time—a

stable condition; unlike any of these other forms of cognitive impairment, ABI can occur instantaneously, after a single traumatic event (Holloway & Fyson 2015)

Personalisation and ABI

ABI represents a small but very costly percentage of the health and social care population. The financial impact of deterioration of individual conditions within this group is therefore amplified above that of many other health related conditions, costing a significant amount per person of the ABI population. To maximise the efficient use of resources, Prevention must be a key aspect of any services commissioned.

The intention of OCC to only provide social care to those for whom OCC have a legal requirement to do so, is again very short sighted as a business case and lacks insight into the complexity of ABI.

The Assessment system around eligibility for care and subsequent award of a personal budget is not geared up for ABI or other conditions for which fluctuation in cognition, executive functioning, insight and the management of personal affairs is likely to be a major barrier. The processes and systems therein, are not fit for purpose. In addition Social Care staff are not sufficiently trained to understand or work with ABI and therefore the outcome of assessments are often insufficient or unrealistic to meet the level of care needed, even if they are found to be eligible. This is inequitable, unfair and potentially challengeable in law.

In the 2015 report:  Acquired Brain Injury, Social Work and the Challenges of Personalisation, it states:

“ABI highlights some of the inherent tensions and contradictions between personalisation as practice and personalisation as a bureaucratic process. Personalised practice remains essential to good outcomes: it ensures that the unique situation of each person with ABI is considered and that they are actively involved in deciding how any necessary support can most usefully be integrated into their lives. By contrast, personalisation as a bureaucratic process may be highly problematic: privileging notions of autonomy and self-determination, at least in the early stages of post-injury rehabilitation, is likely to be at best unrealistic and at worst dangerous” (Holloway & Fyson 2015).

Prevention and monitoring of condition

In addition, as already described, ABI can be/is often a widely fluctuating condition with changes in levels and complexities of need.  Those that present as being non-eligible today may be eligible tomorrow and visa-versa. It is therefore imperative for both the wellbeing of those affected by ABI and the cost effectiveness of the service provision, that there is some preventative service available that monitors and reacts to these fluctuations as well as prevents deterioration in the meantime (if possible).

The population of those affected by ABI will grow exponentially over the coming years, as longevity of life is not necessarily impacted by ABI and annual numbers continue to rise. According to Headway UK research, nationally, hospital admissions for ABI increased by 10% in 2013-14. There were 3855 admissions in Oxfordshire’s hospitals last year. Oxford Head Injury Services’s capacity to support these individuals will be severely reduced in June 2016 if these proposed cuts take place. We anticipate at least a 50% cut in staff and it is a real possibility that the organisation will no longer be sustainable at all, meaning the closure of the only practical and tangible support service for some of the most complex and vulnerable people in our community.

Oxford Head Injury Services as Part of the Solution

To maximise the potential for positive outcomes, it is essential that rehabilitation take place as soon as possible (after the brain injury is acquired) and for a period of time necessary and appropriate to the individual needs. Formal rehabilitation must be supported with repetitive activity and socialisation that allows for the practicing of real world skills, helping individuals to re-adjust to a changed life.

It is also important that the individual’s condition is monitored as physical, psychological, cognitive and the associated social impacts of brain injury can fluctuate widely over any period of time.

Oxford Head Injury Services provides a highly regarded, trusted and extremely cost effect complimentary service that provides solutions to the complex problems above. OHIS’s services:

• Support the potential for earlier discharge from hospitals (relieving bed stay days)
• Provide complimentary rehabilitation, activity and socialisation for up-skilling and reskilling, supporting adjustment to a changed life and improving independence longer term
• Monitor ongoing health and wellbeing, enabling us to respond to fluctuations in and deterioration of condition, thus avoiding crises scenarios from developing and the need for further costly formal statutory intervention. In addition, when there is no other option but to refer back to health services (e.g. serious decline in health such as further strokes etc.) this can be done in a timely way that can minimise the impact on the individual and save the need for more long term costly interventions.
• Have a proven track record of being truly effective in supporting service users, carers and families to better cope with the change in their lives. The high quality of service provision has been recognised by Oxfordshire County Counsel, Clinical Commissioners, the Big Lottery, a host of other statutory partners and most importantly our service users themselves “the doctors saved my life but Headway made my life worth living”.
• A systematic service delivery design that offers opportunities to step down through the service as support needs decrease and independence increases but also the opportunity to re-refer easily if/when there is a need for further intervention.
• Are extremely cost effective. By utilising our charity status we are able to add very significant value in direct financial contribution (through donations, grants, fundraising activity etc.) and volunteer hours. There is even greater potential for savings if OHIS were appropriately funded and embedded within a pathway of care for ABI locally.

We would like to express our huge thanks to the Big Lottery for their ongoing belief in the quality and necessity of our work. This is our fourth successful application over the past decade. The Abi Satellite Service builds on the success of our previous Community Brain Injury Projects and now offers the addition of a number of Satellite centres across the county, bringing our services nearer to those that need them, within their own community.

The service provides essential support for those affected by brain injury in adjusting to a changed life. Information, advocacy and practical and tangible support can be offered to individuals, their families and carers. There are some 3500 new cases of acquired brain injury across Oxfordshire every year and those affected can have very complex needs that can vary enormously. Our team have the expertise to support this group effectively and efficiently.

The success of this bid could have not come at a time of more need, given the proposed catastrophic cuts being implemented by Oxfordshire County Council in their latest round of cuts. Oxford Head Injury Services is one of many voluntary sector providers of social care services within the Oxfordshire community who have been told that their funding is being withdrawn as from 2016. Despite this fantastic Big Lottery grant Oxford Head Injury Services will at the very least be cutting its services next year and quite possibly be unable to sustain ANY services going forward, without further investment and support from commissioners and the community at large.

I would like to ask all those living in the county to join Oxford Head Injury Services in condemning these cuts to the most vulnerable members of our community by sending their views into OCC via the “spending options paper”  that can be found on the OCC website.