Rebecca and Desmond Loo, founders of the Orthotics Campaign, tell their story.
As parents of a teenager with cerebral palsy we have experienced years of NHS Orthotic care.
We watched, aghast, as our son, David, repeatedly outgrew orthoses and footwear before the NHS could get them on his feet; we saw frustrated orthotists apologise and sigh; we applied dressings to bleeding wounds caused by ill-fitting ankle foot orthoses (AFOs) while waiting weeks to see the orthotist; and we cried as we made the choice between allowing David’s ankle to get deformed or forcing him into an AFO that caused him pain and distress.
Our situation culminated when the NHS took 17 weeks to get an AFO onto David’s foot immediately after a period of serial casting. As he came out of plaster cast, his ankle was weak and wobbly. Within days, our usually boisterous, ambulant child had completely gone off his feet and couldn’t even weight-bear momentarily. It was devastating to see our son like this. It was impossible for him to attend school and for me to be at work.
Consumed with anger and frustration we launched the North Staffs Orthotics Campaign. By using “strength in numbers” and “patient stories” we found we could convince providers and commissioners that action was needed.
As we began to receive some national coverage of our work, people from all over England got in touch with us. The issues with NHS Orthotic care were certainly not limited to North Staffs!
As a result, we launched “The Orthotics Campaign” in September 2013. We have not made huge efforts to recruit members, yet both service users and clinicians continue to come forward to add their voices to ours. Maybe you could too?
The commonest issues that service users face are: unacceptable waiting times to see an orthotist; ill-fitting appliances and footwear; poor quality products; and issues which should be simple to fix dragging on for months.
There is also geographic variation on what patients are ‘allowed’ to have. Custom-made footwear seems to present a major challenge, with many patients complaining that shoes and boots simply do not fit.
After months of frustrating efforts to engage with the NHS, we eventually found a ‘way in’ through Healthwatch. They took the many ‘patient stories’ that our members allowed us to share and escalated them to NHS England.
Neil Churchill, the Director for Patient Experience at NHS England, has listened. He is taking forward a project to address the concerns we raised. He has been engaging with many stakeholders, has commissioned a data gathering exercise from the Quality Observatory and held a ‘round table event’ in March to plan the way forward.
We are now awaiting the formal report from NHS England and will continue to contribute to the process as we sit on the steering committee to guide actions and recommendations. We will not cease until the NHS finds a way to ensure that patients who need orthotic care can access an effective, quality and timely service. Join us in our fight!
Find out more and sign up at www.orthoticscampaign.org.uk