1 Acquired Brain Injury in a Changing Environment Headway Oxford Registered charity No Presented By Jamie Miller Headway Oxfordshire

2 Identifying the Need National Figures Estimated 1 million people attend hospital A&E in the UK following head injury. Many more head injuries go unreported. Of these, around 135,000 people are admitted to hospital each year as a consequence of brain injury Estimated that across the UK there are around 500,000 adults living with long term disabilities as a result of traumatic brain injury

3 Identifying the Need Local Figures Discharges between 1/5/2010 – 30/4/2011 Oxford Radcliffe Hospitals (ALL SITES) ABI (Adults Only) = 279 Head Trauma/Bleed/Infection/Stroke = 1508 Discharges between 1/5/2010 – 30/4/2011 Oxford Radcliffe Hospital (JR Only) ABI (Adults Only) = 244 Head Trauma/Bleed/Infection/Stroke = 1336

4 Identifying the Need Experiences of Carers following an Acquired Brain Injury in the Family

Summary of Themes Uncertainty – Prognosis/Diagnosis Changed personalities – Individual/Relative/Carer Changed Relationships and roles within the family – Responsibilities/ Change of lifestyle in the family – Financial/Responsibilities Need for a break and respite – Stress/Freedom etc Transport problems Problems with hospital/care staff Coping with inadequate aftercare and bureaucracy Positive experiences of service provision

Uncertainty ‘With the brain, no-one can tell you, everybody’s different, you don’t know what will happen next’ ‘… Whether he’d live. What his life would be after the accident, or if he’d get that far’

7 Changed Personalities ‘If he can’t get his own way, threatens the pills. [He’s] hard to live with. His personality has changed; he’s not the man I married’ ‘[I’m] not the person I was; [I] was easy-going, [I’m] always stressed now; worrying about money and his health.’

8 Changed Relationships and Roles within the family It’s rather like being widowed, but you can’t grieve – you can’t do it, there’s [my husband] to look after, everything to do.’ ‘Wash him, feed him, cut his food up, everything after accident – might do it for a while, but there’s no end to this. Somebody who doesn’t recognise you, doesn’t want you, [and] used to ask to go home to the hospital’

9 Change of Lifestyle in the Family ‘A lot of the fun’s gone out of life – life used to be fun and my husband was a lot of fun to be with’ ‘The hospitals need to do more for families with a brain injury, not just the person affected. Not just his life, it’s wrecked everyone else’s… He was a successful businessman, run a [business] firm 24/7… life has completely changed; no resemblance to before’.

10 Need for a Break/Respite ‘… I don’t know if respite exists; it might be a myth.’ ‘Changed my life completely; can never really put on my coat and go out – have to plan someone to sit with him – have to plan everything – the freedom has gone’ ‘…no choice have you’

Transport Problems ‘A big issue is transport to her appointments – so it looks like she won’t be able to go to physio appointments… and public transport is crap so would be completely exhausted by the time she got there. Pointless offering it without transport, because she can’t go.’

Problems with hospital/care staff ‘I felt that my home wasn’t even my own – my home was a refuge – people coming in to do physio etc. No privacy at all.’ ‘Never known from day one, what to expect. No-one sits you down, no-one like talking about it I don’t think. Nobody has ever said he’s got brain damage. It’s written in the reports, but then we haven’t talked to that many medical people’.

‘There should be a lot more aftercare than there is… Needs to be more aftercare, needs to be more thought put into it’. ‘There should be more services for the patients like, at the OCE, should be entitled to more of what they need. People getting boob jobs on the NHS. It makes me so angry. It’s not their fault what’s happened; should get what they need.’ Coping with inadequate aftercare and bureaucracy

14 Positive experiences of Service Provision ‘It’s not all negative. Staff in the JR, NOC and Headway are fantastic. Individuals are brilliant, but systems could be improved!’ ‘[She] came to assess him, within 20 minutes had him stood up. Her mission – will walk again – did get him walking… that’s what you need, someone with determination.’ ‘Headway helped me. Headway has been [his] lifeline, and ours.’

15 What makes ABI different Catching the bus to “Independence” via “Choice” and “Control”

16 What do now? Observe & Communicate –what WORKS well now (as well as what doesn’t) – listen to services users! Pro - active and Creative - Invest in effective and efficient models that reflect the identified needs Courage and Honesty – prevention, personalisation, consultation, choice, control etc We don’t want Independence to = Isolation!!

17 Thank You