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Introducing SCYSS

Sickle Cell and Young Stroke Survivors (SCYSS) was set up by Carol Ossai in 2005. Carol’s son Daniel was diagnosed with both sickle cell disease and moyamoya disease, causing him to have his first stroke at the age of 6 and another 5 strokes since.

At the time of his first stroke, most resources available focused on adulthood stroke, and subsequently there was very little support available for paediatric patients. Over time, Carol collected information from doctors, conferences and the internet, finding information such as how to deal with paralysis without medical assistance, and best practice in the event of a stroke episode. When nurses started referring new families to Carol for information, Carol set up SCYSS as a patient group and later registered as a charity, so that she could share information more widely.

The existing childhood stroke guidelines

The original childhood stroke guidelines were published by the Royal College of Physicians in October 2004. However, these guidelines had clear gaps in their recommendations e.g. they focused on ischemic stroke as opposed to haemorrhagic stroke.

In addition, it was apparent that these guidelines had not been incorporated into routine care of childhood stroke patients and disjointed practice between hospitals was evident. At one of the hospitals Daniel was taken to during a stroke, medical staff were not aware of the guidelines and subsequently had to ask him, while he was in intense pain, how he would normally be treated.

The new guidelines

In a project spearheaded by the Royal College of Paediatrics and Child Health (RCPCH) and funded by the Stroke Association, the 2004 guidelines were re-written and published in May 2017 with NICE accreditation. The full guideline and supporting awareness posters can be found on the RCPCH webpage.

The aims behind the guideline update were to:

  • Reduce misdiagnosis of childhood stroke
  • Prevent future strokes
  • Provide medics with the most up-to-date information
  • Ensure consistent procedure between hospitals
  • Ensure patients are referred to clinicians with appropriate expertise
  • Raise awareness among the general public
  • Provide information to parents
  • Improve care
  • Reduce emotional impact on the child and their family
  • Improve quality of life

The committee also developed a shorter A5 version of the guideline for parents, carers and families. This version was intended to help parents understand what a stroke is, why they occur, and how young people should be treated and cared for. Crucially, this version is small enough for parents to keep with them at all times; having the information to-hand and being able to pass it onto paramedics and emergency doctors can be crucial to patient survival.

Carol’s involvement

A large team of clinicians from across the UK came together to form a Scientific Advisory Committee for the guideline development. As one of three parent representatives on the committee, Carol was heavily involved in the recommendations that were made. She understood the areas of unmet need and was able to provide a different perspective to that of healthcare professionals and other stakeholders.

More specifically, Carol’s role involved:

  • Providing input into the development of the draft guidelines
  • Participating in two focus groups which captured her personal experience
  • Supporting the development of lay materials
  • Supporting the dissemination of the guidelines

There was a large time-commitment associated with involvement:

  • 10 x 4 hour meetings
  • 30 hours reviewing research papers for data extraction (1,500 pieces of literature were reviewed)
  • 20 hours reviewing emails, documentation and correspondence

Carol says that key challenges were:

  • Emotional burden, due to the recollection of distressing events
  • Large time commitment
  • Logistical challenges associated with travel to meetings
  • Understanding research documentation and medical terms

Carol was very grateful for the opportunity to be involved and appreciates that by putting systems into place for other families, she has helped to save other children’s lives.