At ABIL committee meetings, conferences and during networking, we frequently seem to find ourselves talking about what needs to change in the brain injury world. What needs to change to improve a whole bunch of things not only for survivors, families and carer’s but also for professionals. The brushstroke is broad, the ideas are varied and the solutions can range from simple to complex. Taking these forward never seems to be easy. There seem to be common enduring themes around people falling through the net, not being able to access the support they need when they need it, limited services and resources, funding limitations and frankly the list goes on and on. ABIL felt it was time to host a conference that brought a number of these issues under one roof and the result was our September Conference to focus on Brain Injury – What Needs to Change?
We were delighted to put together a strong programme of speakers presenting on a range of issues. Of course it was not possible to cover everything in one afternoon but there was much to gain and learn from the areas that were covered and a large number of delegates attended.
Chris Bryant, MP for Rhondda and Chair of the All Party Parliamentary Group for Acquired Brain Injury, brought us up to date with the aims of the group and the progress it has made in just under a year as well as future plans. The first report from the APPG was due to be launched in October – and has now been published under the not dissimilar title ‘Time for Change’ – see https://www.abil.co.uk/party-parliamentary-group-acquired-brain-injury-report-published/. and will address a number of key issues, including the lack of sufficient neurorehabilitation at the right time. It will be a must read. It was great to hear Chris’s passion and enthusiasm and it is important we all support him and UKABIF and the work of the APPG as much as we can. He dealt with a whole range of questions in a straightforward, direct and honest way.
Kate Gravett talked about the everyday challenges of supporting a child with an acquired brain injury, and how the life of the family had changed forever. It was an incredibly moving and powerful presentation. At a time when people need support and understanding, Kate’s experience indicates something closer to the opposite as the system contrives to make everything more difficult. She talked about the day to day struggles and frustrations, the bureaucracy and constantly ‘having to prove’ things and the child growing up as a teenager who experiences difficulty with judgment and the knowledge that this will be ongoing. When Kate said ‘our family lives in a snow globe – it’s cold and isolated’ it felt like an incredibly sad and powerful message and underpins the view that an ongoing scaffolding of support and the right services are imperative.
Research into homelessness and brain injury has been gathering pace and Leigh Andrews of Change Communication reported on the work she has been doing on the Westminster Brain Injury and Communication Project. Research has shown that ABI exists in the homeless community and it’s not just TBI. Brain injuries acquired in earlier life can lead to homelessness, and the impact of ABI maintains the homelessness. Leigh cited the need for routine use of the brain injury screening index, advocacy and legal support to challenge decisions to refuse services and brain injury champions to drive forward change in homelessness.
Assessments for those affected by brain injury has been an ongoing and often contentious issue and Dr Mark Holloway, Brain Injury Case Manager, Headfirst talked about supporting social workers to undertake these more effectively. Mark talked about ABI being a process and not a one off event. He talked about the importance of ‘awareness of limitations’ and ‘knowing what you don’t know’. He cited an often ‘over estimation of capacity’. The assessment process is hindered by absence of knowledge, lack of continuity and lack of 3rd party evidence being taken into account and people being pushed from pillar to post. Mark urged everyone to read ‘The frontal lobe Paradox’ by Melanie George and Sam Gilbert. Effective assessment is not a one off 20 minute visit and social work training needs to provide much more knowledge of brain injury.
Dr Clare Mills – Public Affairs Manager at Headway – the brain injury association – spoke about the challenges facing the third sector, looking at Headway in particular. Headway’s two-fold role was: to promote understanding of all aspects of brain injury and to influence politicians and policy-makers across the UK when the issues they work on affect people with ABI, their families and carers, or when their work will have an impact on the incidence of ABI; and to support the affiliated groups and branches in providing services to improve the lives of brain injury survivors and family members/carers across the UK (there are 6 groups in London), and also to help them develop positive, effective relationships with their local politicians and decision-makers.
She said that the many regional groups around the country face considerable the challenges in continuing to provide services – in the face of public sector budget cuts – in particular with Local Government experiencing over 40% cut from their central government grant since the start of austerity. There was no current concept of spending money in the right way and at the right time to save money, as well as make lives better!
She spoke about the need for better data regarding the incidence of brain injury, including mild TBI, so that government policy can be based on an accurate assessment of the scale of the problem. And the importance of evaluating our work, – building evaluation in from the beginning, as has been done for the Headway UK HATS Nurse project and the Justice Project.
Dr Karen Hoffman, Head of Trauma Rehabilitation Research, Barts Centre for Trauma Research has investigated rehabilitation needs and recovery of trauma patients and provided a summary of the work she had carried out which looked at measuring rehab needs and questioned a number of things such as ‘what are we measuring’? ‘what are the recovery needs from the patient’s perspective’? ‘what does specialist rehab look like on a national level’? The research found that Rehab Prescriptions are very ‘inpatient focused’ and that ongoing rehab and support as an outpatient are paramount and there continues to be a postcode lottery of services. She referred during her presentation to the After Trauma website http://www.aftertrauma.org/ that connects and supports survivors of traumatic injury and their families. This includes an on-line forum http://www.aftertrauma.org/forum/index.php
A packed programme came to an end, but there was a real buzz afterwards as delegates chatted amongst themselves and with the presenters and the ABIL Committee. A large number of evaluation forms were completed and handed in and the feedback was amazing. We are also aware there were some technical issues around microphones etc and we will address these. On behalf of ABIL I would like to thank all the wonderful presenters and the delegates as well as Irwin Mitchell for their ongoing support and look forward to our next conference on Tuesday 4 December 2018.
The programme and following presentations and slides can be downloaded here:
Tony Hart – Chair of ABIL