A first-of-its-kind programme for patients who survive a bleed on the brain has reached its 15 year milestone, supporting over 500 patients during that time.
The Road to Recovery course was founded in 2007 by a group of specialist staff at The Walton Centre NHS Foundation Trust, who identified that people who experienced Subarachnoid Haemorrhages (SAH) – a potentially life-threatening bleed on the surface of the brain – needed a higher level of support after initial treatment.
At the time, whilst physical treatment of SAH was comprehensive, the social, psychological and practical needs of those patients surviving the trauma were lacking.
From this realisation, a project involving patients and the wider public was launched, resulting in the creation of the Road to Recovery course – a course aimed at informing patients and their families and bringing them together to share their knowledge and experience.
The Road to Recovery course was the first of its kind when it was created, with many other centres nationally following their lead in the 15 years since. The course is now also offered remotely by The Walton Centre.
Groups such as The Brain Charity and the Brain Haemorrhage Support Group (BHSG) take part in the course, which is led by specialist nurse practitioners and interventional neuroradiologists, psychologists, occupational therapists, physiotherapists and neurosurgeons.
The course covers coiling an aneurysm – the main treatment for SAH – the psychological effects of SAH and gives practical help on common issues such as fatigue and exercise as well as talks from people living with the effects of an aneurysm.
Neurovascular advanced nurse practitioner Cathy Stoneley was part of the team which launched the course in 2007 and is still helping to deliver the course today.
“It’s been an amazing journey to see the course grow from strength to strength,” she said.
“Patients always give really positive feedback about the content of the course and the opportunity to meet people who are in the same boat, so to speak.
“The Walton Centre treats about 150 patients a year for SAH, so it’s vital that these patients get ongoing support for their rehabilitation.
“The work we do is ever-changing, and the pandemic was a particular challenge as they’re usually in-person sessions. To adapt, we made the courses available online – with huge success!”
SAH is most common in people between the ages of 40 and 60, usually affecting women more than men.
In May 2021, Darryl Hyde from Warrington blacked out after he fell in the garden.
Darryl had a SAH and had an emergency endovascular coiling performed. He and his wife Louise attended the Road to Recovery course recently.
Darryl said: “It was incredibly useful for us to be able to take part in these sessions.
“For me, it was great to meet people who were at different stages of their recovery after a bleed on the brain.
“I’ve experienced fatigue and other side effects and to meet and talk to other people who have too helped to normalise many if the issues I faced.
“Louise has been a rock throughout my rehabilitation, but it is so reassuring to know that there are other people going through similar experiences after SAH.
“For Louise, the course was informative and gave her a great insight into what treatments I received, and also the coiling procedure which saved my life.
“The sessions on practical help with recovery from the occupational therapists and physiotherapists was very useful too.
“I’m so thankful for The Walton Centre, the continuity provided from first admission all the way through to the course six months later was amazing, I truly feel that the staff at The Walton Centre can relate to my case on a personal level – Cathy and Debbie the specialist nurses: I am very thankful for all their support.”
The Walton Centre’s medical director, Dr Andrew Nicolson, said: “I’m delighted that a course of this nature has lasted so long and has helped so many patients.
“SAH is often a life-changing event in someone’s life, even if they make a full recovery. I’m proud that our clinicians have used this course to put patients together, to foster a sense of community and enable them to be reassured by each other’s experiences.
“I very much look forward to seeing what the next 15 years holds.”
