Shine news

Shine's plans for using '1000 Voices' Survey information

21st October 2021


In 2020, Shine surveyed its members with spina bifida. All adults over 25 were asked for their experiences of living with their condition, changes as they age, their health services, and how their needs are met by health services. Over 1000 responses were received, and the full report was recently published.

You can read the summary and full report by clicking on the buttons below.

Summary findings           Full report


Thank you to everyone who so generously shared their experiences of life and health with spina bifida last year. We want to share with you how we plan to use the data you’ve given us, to improve our information for members and professionals on health issues, to improve our support, and to campaign for better health services for you.


Improved information

We will write a handbook in 2021-22 on spina bifida in adulthood with sections on:

  • Bladder
  • Bowels
  • Tethered cord
  • Chiari II
  • Skin and tissues
  • Mobility/bone health/orthopaedics
  • Pain
  • Sleep apnoea
  • Mental wellbeing
  • Pain
  • General health

Each chapter will include a summary at the end for health care professionals and relevant best practice guidance.

You told us that pressure sores were an important issue, beginning often in childhood, and are a major cause of hospitalisation and reducing your quality of life. A Shine staff group has already begun work, collecting information, in order to produce age-appropriate information and resources to help prevent pressure sores, aimed at parents, teenagers/young adults, and older adults. We will be working with groups of members of different ages to make sure the resources are as useful as possible.

In 2021-22, we will update the driving leaflet to include health information, and write new web information on employment and spina bifida to include health issues.

In 2022-23, we will write a book to replace Below the Belt, with age-appropriate information on spina bifida and preparing to take ownership of health and based on 1000 Voices. We want to inform young people aged 13-18 about their condition, prepare them to manage their health, detect changes early and prevent the complications members have told us about. There will be information on the same categories as the above book, plus sections on:

  • Food, drink, keeping a healthy weight
  • Sex and relationships
  • Working towards independence
  • Moving out/going to University


Improved support

Based on the information you gave us, we will begin emailing targeted messages prompting check-ups for blood pressure, blood tests, screening programmes, wheelchair/seating checks, bone density tests and more.

The Health Team, working with our Adult Wellbeing Co-ordinator, will develop services to support members with anxiety and depression, in closed Zoom groups, and pilot a group for people living with pain.

We have developed a Hospital Passport for people without learning issues, to complement the one we currently have, to help improve communication with your health services, carers etc, on your needs and how they are best met in hospital.

We will introduce virtual health checks, using the issues raised in the 1000 Voices Survey to support you in planning your health care, and providing advice and resources to help prevent deterioration.


Improved health services

The original report based on the findings from the 1000 Voices Survey has been edited specifically for healthcare professionals and will be distributed to hospitals with Neurosurgery Centres and Neurological Rehabilitation Services. The Health Team will follow up to identify with them how services can be set up, or improved to offer proactive, multidisciplinary care through the transition to adult services. It will also be shared as part of our Professionals Engagement Strategy, on our Professionals’ Area of the website, and you can share it with your GPs.

PSSAG (Prescribed Specialist Services Advisory Group) considered a request from NHS England for Nationally Commissioned Services for adults with spina bifida. After several years’ deliberation, they decided that they would not recommend nationally commissioned services, as some aspects of care (such as specialised urology and neurosurgery) were already covered. They informed Shine they would only reconsider if we presented new and compelling evidence of the need for nationally commissioned services. We believe the 1000 Voices Survey report contains this evidence. Tethered cord and Chiari II are conditions specific to our members with spina bifida, which are resulting in significant changes in health, lifestyle and employment. The report highlights the complexity and interaction between aspects of the condition that make a compelling case for coordinated services, and we will put that case to PSSAG later this year.

The Rare Diseases strategy and framework present opportunities for improvements to services. The strategy in particular highlights the need for coordination and multidisciplinary working to support people with rare conditions. We will also work with national data services, such as NCARDRS to collect data on trends, e.g. hospital admissions for potentially preventable ill-health (pressure sores, urinary tract infections/sepsis) and calculate an approximate cost to the NHS, to help us campaign for change.

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