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BSF organises UK's first SAH conference for patients and carers

On 5 November 2016, the Brain & Spine Foundation organised the UK’s first conference for patients and carers dedicated exclusively to subarachnoid haemorrhage – a rare but often deadly kind of stroke – as part of the charity’s commitment of supporting people affected by neurological conditions.

The Life after a Subarachnoid Haemorrhage conference brought together people at the National Hospital for Neurology and Neurosurgery to meet and share stories and hear from experts in order to understand how SAH can affect their lives and how to manage the long term side effects.

Over 120 people turned up for the event from all corners of the UK with families and couples filling up the lecture theatre at 33 Queen Square. Our CEO Alice Doyle kicked off the conference by giving an overview of BSF’s work and stating the importance of this kind of event for the community of SAH survivors, to share information and meet others with similar experiences. Alice also announced the creation of a Facebook Group for people affected by SAH which BSF will launch in the coming weeks.

The chair for the day was neurovascular nurse specialist Lesley Foulkes from the Wessex Neurological Centre in Southampton who also gave a talk on the role of clinical nurse specialists (CNS) in supporting SAH patients which among other things include: providing individualised care, early identification of longer term problems and being an advocate for patient and family.

Lesley was followed by Dr Lakshmi Kanagarajah, an Interventional Neuroradiology Fellow, who talked about diagnosis, prognosis and treatments of SAH and brain aneurysms. Dr Lakshmi’s informative presentation provided the audience with a detailed medical analysis of SAH and included the most up-to-date figures on the condition such as the fact that spontaneous SAH affects 6-9 people per 100,000 per year, accounting for only 6% of all strokes but its mortality rate is 50% with 10-15% of patients dying before they reach hospital.

The next talk was given by Clinical Neuropsychologist Dr Lynne Aitkenhead on memory and cognitive problems after a SAH. Throughout her presentation she stressed the fact that short term memory loss and attention problems are extremely common after a SAH but there are many things you can do to improve your memory such as keeping a diary and using certain mobile apps that help manage daily life.

Following Dr Aitkenhead, Clinical Psychologist Dr Sabah Khan gave her presentation on relationships after a SAH. Her talk was focused mainly on analysing feelings and psychological behaviour of couples affected by a SAH. She explained the processes and stages which people go through if they themselves have gone through a SAH and how it affects their loved ones.

After lunch, Kavita Basi shared with the audience her story of having survived a SAH. Her first-hand experience resonated with many people. She offered tips and pointers on how to manage common post-SAH problems such as memory loss, fatigue and self-confidence. Her emotional talk was followed by another personal one, this time by a carer. Lionel Winyward shared with the room, in a humorous and heart-lifting way, the story of his wife’s SAH and how he dealt with it at the time it happened. 

The last presentation of the day was given by Clinical Specialist Occupational Therapist, Dr Kate Hayward on fatigue following a SAH. Dr Hayward reiterated the fact that fatigue is not the same as tiredness, providing the audience information on a range of fatigue management therapies. She also stressed the importance of rests – even of forced rests, during recovery.

Before the conference came to a close, the panellists replied to queries from the audience through the questions cards that they had previously filled in. A lively discussion took place with many people sharing their personal SAH experiences.  

We received a lot of feedback on the conference and we were extremely pleased to hear that the huge majority of people who attended found the event useful and informative. People commented on the fact that they had never actually met other people affected by the same condition, and some made clear that there is a huge need for this event for their community.

Some quotes from people who attended...

I loved the whole conference from start to finish and it has given me a lot to think about and help in understanding what I am going through which I'm sure is the same for others. It was very well organised and put together.

Thank you to everyone involved in organising and helping with the event. Having an SAH can be isolating and I think these kind of events help to pull people together-actually feel less isolated after the event

Much needed! May there be many more in the future...

We at the Brain & Spine Foundation were delighted to hear these positive reactions. We look forward to working together with health professionals and patients of not only SAH but other neurological conditions to organise more events like this one in the future. In the meantime, our helpline continues to offer specialised support and expert information for anyone affected by a neurological problem.

Thank you to Christchurch Group for kindly sponsoring the event and to Queen Square Private Healthcare for providing the venue and facilities. 

You can download and the presentations' slides and watch Kavita's story here.