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

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    Events & Meetings

    November 2018

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    Our Committee


    Co-Chair :         Dianne Rigby

    Co-Chair:          Linda O'Hara

    Co-Secretary:   Alan Clark

    Co-Secretary:   Maureen Mellor

    Treasurer:        Glyn Faulkner


                       

    About the BHSG


    We are an independent voluntary group based in Liverpool with a membership drawn from a much wider geographical area. Although the majority of our members have been treated at Walton Centre NHS Foundation Trust, we welcome anybody who has been directly or indirectly affected by brain haemorrhage. This invitation is offered regardless of whether you suffered a brain haemorrhage recently or in the distant past.
     

    What are the aims of the group?

    We aim to provide both practical and emotional support for people affected by brain haemorrhage. We bring together those affected by the condition to identify and address common issues. The intention is to reduce the negative impact brain haemorrhage has on people’s lives. We want to help restore people’s self-confidence and wellbeing by removing some of the barriers and understandable anxieties. Ultimately, we hope to speed their progress, independence and recovery. The founder members of the BHSG are themselves brain haemorrhage survivors and their families.

    • We aim to provide essential information and facilitate educational activities and resources about the condition.
    • We aim to raise the awareness about the impact the condition may have on people’s lives. This includes the often forgotten carers and family perspective.
    • We aim to use our collective voice to highlight areas where services need improving (e.g. access to psychological assessment and support).

     

    What activities and services do the BHSG provide?

    • The ‘Road to Recovery’ course is perhaps the flagship of the group’s activities (see R2R link for full information). In partnership with the Walton Centre we help to present and fund four, two hour, informal information sessions. Here people are introduced to the BHSG and the Neurovascular Nurse Specialist. They have Q&A opportunities with Neurosurgeon and Neuropsychologist guest speakers. A welfare benefits advisor will also be made available. The course is designed to support every aspect of people’s recovery.
    • We also hold four Support Group Meetings each year (see link for details). Here we present a mix of informative forums encouraging peer group self-help. We allow time for people to share their experiences. Guest speakers and health professionals (including the Neurovascular Nurse specialist) are often present at the meetings.
    • There is a BHSG Helpline for people who would like to speak to someone with personal and general experience of the condition. The Helpline is also intended for carers and family who are perhaps themselves in need of a little support. Apart from receiving general enquiries about the BHSG, we use the helpline to direct people to other services such as those provided by ‘Neurosupport’ (see ‘Useful links’).
    • The BHSG produce a ‘Milestones’ Diary.  This is freely available at the Walton Centre and group meetings to patients who have suffered a brain haemorrhage. It is designed to encourage patients to record even the smallest milestone in their recovery. It aims to promote a positive outlook especially when progress may appear to be slow. There is a section in the diary for family and friends to use while visiting.  Sometimes patients have worrying gaps in their memory and this can help. (See Milestones link).
    • The BHSG are on Facebook where the members do the social networking thing, often offering mutual support and some lighthearted relief!
    • We have a small library of books relating to brain haemorrhage. Some of our members have written a personal account of their own story (see Personal Stories link).

     

    Is the BHSG backed by the Health Professionals?

    • Yes!  We are privileged to have Consultant Neurosurgeon, Mr. Mohsen Javadpour as the Patron of the group*. He speaks regularly at the ‘Road to Recovery’ courses and other group meetings. The members regard his informal question and answer sessions as invaluable. We owe a debt of gratitude to him and several other neurosurgeons who give their valuable time to the group. (See ‘Acknowledgements’). *Mr Javadpour has since gone to work in Ireland.
    • Consultant Neuropsychologist, Dr. Peter Murphy has made a huge contribution to the wellbeing of the BHSG’s members. He regularly talks to the group about the psychological effects of brain haemorrhage and offers strategies to help cope with them.
    • Catherine Stoneley is the Neurovascular Nurse Specialist at the Walton Centre. She works closely with the BHSG committee and is a vital link between the group and the Walton Centre.  She plays a key role in helping to organize the ‘Road to Recovery’ course and is often guest speaker at the general group meetings.
    • Is the BHSG funded by the NHS?
    • No. The group is independent. We fund the ‘Support Group Meetings’ and ‘Road to Recovery’ courses with social and community fund grants. Working hard on various fundraising activities also allows us to continue with our work. Several donations from benefactors who appreciate our voluntary work have been much appreciated.

     

    Does the group offer medical advice?

    No. We offer practical and emotional support but do not give medical advice. We provide general information about brain haemorrhage and invite medical experts to speak about the condition. However you should only seek individual medical advice from an appropriate health professional such as your consultant, nurse specialist or your GP.


    Not a ‘Support Group’ type of person?

    Neither were we!  At least not until dire necessity demanded that we form our own support group! Our members tell us just how much the group has helped them, so why not give it a try?

    Everybody has their own unique experience of brain haemorrhage and we do not presume to tell anybody what they need to do.  But it is really helpful to see the bigger picture; to learn how others feel and how they may have dealt with similar problems.

    Our founder members direct the meetings with sensitivity. We provide essential information while being careful not to burden people with unnecessary anxieties. With all the information and mutual support it’s easier to see the light at the end of the tunnel.