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Providing expert support to people affected by neurological problems

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BSF 2016/17 User Survey results reveal high levels of satisfaction

 "My condition was so unusual my GP had never seen it in 25 years. It was so good to talk to someone who understood."

On 30 November 2016 we launched a survey to hear from our service users about their experience of using Brain & Spine Foundation’s services such as our Helpline, publications, online communities and website information.

We wanted to understand what you as our service users want and need from BSF and the feedback provided is vital for our charity to grow and improve as an organisation focused on providing expert support to people affected by neurological problems. 

290 people responded to the survey which ran for around 2 months – that’s over 80% more responses than our 2014/15 survey. 85% of respondents were people with a neurological problem or condition, and the remainder were friends/ family members or carers. The people who responded are affected by 81 different conditions, including many with multiple neurological conditions, showing the breadth of work we do across neurology. The most common condition mentioned was subarachnoid haemorrhage (24% of respondents), an area of particular expertise in the charity.

“I so wish I had known about you when I first left hospital”

We were delighted to see that overall there is a very high satisfaction level with our services and a great deal of positive feedback. 82% told us they felt more informed after using our services, 83% were satisfied or very satisfied overall with the support and services they’ve received.

In addition, 93% of people who told us they’d used the helpline were satisfied or very satisfied and 95% for the booklets and factsheets. 

More people noted that they were looking for medical information, rather than practical or emotional support, which reflects the specialist support we provide. In free text responses people often mentioned that they had accessed “expert” help, from “nurses” and indicated that they weren’t able to find this information or support elsewhere. 

“The advice on the website was clear and practical, not terrifying!  When I phoned for medical advice everyone I spoke to was very comforting and I didn't feel rushed - I felt I was listened to.” 

There are, of course, areas in which we need to work on.  When making suggestions about how we could improve on what we do, or what would be most valuable to them, a wide range of responses were given, although some key themes emerged:

  • Some respondents have used our website and services although wanted more information about their specific condition
  • Many noted the lack of knowledge of health professionals and/ or would like us to focus on improving awareness with this group
  • Similarly many noted that we could work to improve public awareness of neurological conditions 
  • Finding support and information sooner was another key theme
  • There is a general lack of emotional and psychological support and many noted that this would be valuable to them. 

We want to thank everyone who took part in this survey for taking the time to provide vital feedback.

We’re working to develop our plans in response to the feedback you gave us, and you’ll be able to read more about our strategy for the year ahead in next month's newsletter. 

“The Brain & Spine Foundation helped me and my husband/carer so much so they saved my life - this is no understatement”