Have your experiences of hospital bowel care improved?

In 1974, Baroness Masham founded SIA to support spinal cord injured (SCI) people who were receiving poor care in district general hospitals. Forty-five years later, this is still central to the support we offer SCI people.

Prime amongst complaints is the bowel care (or lack of) that SCI people receive when being admitted to non-specialist hospitals. In 2017, SIA raised this perennial issue with NHS Improvement so that something could be done to improve the health and dignity of people who require manual bowel evacuation. We worked closely with the NHS and Royal College of Nursing to address this issue, and in 2018 a Patient Safety Alert was sent to all NHS Trusts – or their equivalents – in England, Wales and Northern Ireland. The Alert demanded that they update policies and provide manual bowel evacuation to SCI people and training for staff to undertake the process.

The evidence of SCI people was crucial in achieving this, and we were able to take examples from our Advocacy, SCI Nurse Specialist and Peer Support services to help make real change to the way this support is provided.

January 2020 will mark a full year since NHS Trusts were requested to update their bowel management procedures and policies – but has this worked? We would love to hear from you about your experiences in 2019. Your stories are important for us to understand the effect we have had and where we must use our influence to get further action from the NHS. If you have received bowel management in a non-specialist hospital in 2019 –whether good or bad – then please tell us about it.

You can also contact our Advice Line, which can help you to raise your concerns with the NHS and the Care Quality Commission. This reporting is crucial to our ongoing work, flagging up to the NHS that there is still a long way to go before SCI people can truly trust the care that they receive in non-specialist hospitals. All evidence is anonymous, and you could dramatically improve treatment for other SCI people who use that hospital.

For those newly injured people who are not lucky enough to make it to a specialist SCI Centre, treatment in district general hospitals or other non-specialist settings remains poor, not only limiting the chance of an independent life, but also sometimes leading to life threatening complications. Unfortunately, there is no quick fix to this problem in a severely under-resourced NHS and SIA works with a number of partners, agencies and politicians to try to improve the capacity of specialist services to meet unprecedented need. Since 2016, we have lobbied for NHS England to establish a new network of SCI Centres, health commissioners and healthcare professionals from the wider patient pathway to focus on the patient journey, standards of care and methods of extending the care of specialist services beyond the four walls of the SCI Centres. In the summer, it was announced that an Operational Development Network would be created, with SIA having a seat at the table to represent SCI people.

We have met with government ministers and senior civil servants, and have taken various MPs to visit their local SCI Centres to raise the profile of the SCI service and the issues it faces.

SCI people across the country are helping us to get meetings with their MPs. Do you live in the same constituency as an SCI Centre? Then you have a real opportunity to help all SCI people get access to the specialist services they so desperately need.

Please contact our Campaigns Team to see how you may be able to help us meet with your MP. Email [email protected] or call 01908 604 191.