Providing practical and emotional
support for all people affected
by brain haemorrhage

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    History of the BHSG


    If necessity was the mother of the BHSG, then perhaps Tony Murphy was the Daddy! When he retired from his position as the Walton Centre’s ‘PALS’ manager in 2010, the BHSG presented Tony with a totally inadequate retirement gift. It was a small glass plaque inscribed with the words  “To a man who made a difference”.
     

    Tony’s experience had given him insight into the impact neurological conditions have on people’s lives. Back in 2003, we had talked with him about the ‘sense of abandonment’ experienced by us and other brain haemorrhage survivors following discharge from hospital.  We believed that it was simply unacceptable that the system appeared to be unaware of the extent of the long-term problems endured by some survivors. Meetings he’d arranged confirmed this consensus. People had nowhere to turn.

     

    ‘The job’s not done!’

    Following a meeting (in 2003) for people affected by brain haemorrhage, a letter was sent to Tony by one of the group’s founder members, which commented on this distressing situation. In summary the letter stated…
     

    ‘The Walton Centre gives families a second chance to remain as families. We will never forget that.  Many of us owe our lives to the neurosurgeons. But their laudable achievements and life saving skills are devalued if the system ultimately fails patients by considering it ‘job done’ when patients are discharged from hospital. Patients receive excellent medical follow up, but there is no follow up to address their complex emotional, psychological and practical problems’.
     

    We felt compelled to do something about it. Tony’s experience working with other groups helped provide a framework. By adopting the holistic, all-inclusive format of the ‘Road to Recovery’ course, most aspects of the problems facing brain haemorrhage survivors could be acknowledged and broadly addressed: ideally at the newly diagnosed stage.

    The Walton Centre’s Neurosurgeons and Neuropsychologists committed their essential support. We could then offer ongoing long-term help to people by developing additional support group activities.
     

    The ‘Road to Recovery’ course, which the BHSG funds and helps to run in partnership with the Walton Centre, is Tony’s legacy to brain haemorrhage survivors. With the essential help of the Walton Centre the BHSG hope to maintain the course for future brain haemorrhage survivors.
     

    Progress

    A small number of us were determined that our negative experience after hospital discharge should not be repeated.  Despite the fact that some of us were still very vulnerable, there was work to be done.
     

    Denny Macaulay-Gamble and Maureen Mellor had both survived particularly traumatic brain haemorrhage experiences. Along with Sue Brougham, Alan Clarke and Paul Gamble they became the founder members of the Brain Haemorrhage Support Group.
     

    During the next few years we invited hundreds of people who had been affected by brain haemorrhage to our meetings. ‘Neurosupport’s generosity in allowing the group free use of their facilities until we could secure funding proved to be crucial to our development.
     

    Our work had left us well positioned to apply for funding.  Having formalized the group with a ‘Constitution’ and a plan of action we successfully applied for funding, receiving £7,293.00 in January 2009.  The BHSG were now supported by the ‘European Social Fund’ through the ‘Community Foundation for Merseyside’s Employable Communities Fund’ in partnership with ‘Merseyside’s Expanding Horizons’ and ‘Merseyside Disability Federation’!
     

    The BHSG Committee was formed. Maureen Mellor and Denny Macaulay-Gamble were joined by Brenda Beaven, who had also survived a brain haemorrhage. They adopted the roles of ‘Chair’, ‘Treasurer’ and ‘Secretary’ respectively. The other founder members initially formed the remainder of the committee, which in time time welcomed the help of one or two other brain haemorrhage survivors. These new committee members included Jackie Doolan who has done a wonderful job as the BHSG Facebook administrator, enabling online mutual support for our ever growing membership.  Nandy Allen, Maureen Wiles (now treasurer) and Paul McCarrick are the remaining committee members offering essential support to the BHSG.
     

    Chris Wardle of Merseyside Disability Federation played a significant role in the group’s development. Her advice and capacity building work allowed us to grow in confidence and remain focused.

     

     

    The Big Picture  

    By continuing to bring brain haemorrhage survivors together in an atmosphere of mutual support, the real issues can be more clearly identified. When repeated over several years by many different people, individual anecdotes can become unmistakable themes. They are truths spoken with an authoritative collective voice. That voice can identify what needs to be done and influence the future direction the BHSG. More importantly, that collective voice can help improve the wellbeing of future brain haemorrhage survivors.