Demanding better care

Adult CP Hub founders Emma Livingstone (left) and Miriam Creegar (centre)
Adult CP Hub founders Emma Livingstone (left) and Miriam Creegar (centre)

Southgate resident Emma Livingstone is campaigning on behalf of people living with cerebral palsy

I’m a mother of three living with cerebral palsy (CP); an umbrella term for a group of lifelong conditions that affect movement and co-ordination caused by problems in the brain before, during or soon after birth.

Around 111,000 people have the condition in the UK, similar to the number with multiple sclerosis or Parkinson’s disease. However, co-ordinated and specialist services unfortunately do not exist today for adults with cerebral palsy.

Because it is traditionally thought of as a non-progressive condition and life expectancy is similar to the general population, attention is mostly focused on services for children. However, CP is still degenerative and needs ongoing treatment to offset medical issues, such as early joint degeneration, that can be extremely debilitating if left untreated.

To help pressure the medical profession and politicians to improve care for adults with CP, last year myself and my physiotherapist Miriam Creeger founded the charity Adult Cerebral Palsy Hub to campaign for better support and services and give a voice to the CP community.

The idea for the charity emerged in early 2016 when I was recovering from hip surgery. I had seen a significant decline in my mobility in my late 30s, which had led to several surgeries and having to give up work as a speech and language therapist.

As a charity we are endeavouring to bring people together and create the space for conversations around CP. We believe that by sharing experiences and demonstrating how practice could be done differently, we can galvanise support and begin to change what people imagine is possible.

In January this year the National Institute for Health and Care Excellence (NICE) published guidelines for the care and support of adults with CP, for the first time. This is an important framework to shape improvements to services and although there is no compulsion on health commissioners to implement these changes, we believe services could and should be different.

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In April, we held a discussion with representatives from leading London hospitals and NHS special commissioning to talk openly about the issues involved in meeting the lifelong needs of adults with CP. I have also taken our campaign to parliament and in August myself, Miriam and Paralympian Leon Taylor, an Adult CP Hub ambassador, met shadow disabilities minister Marsha De Cordova.

To mark World Cerebral Palsy Day last month Adult CP Hub ran a family fun day at Chickenshed Theatre in Cockfosters to promote the benefits of activity and exercise to help support mobility and delay degeneration. Mayor of Enfield Kate Analoue attended the event along with more than 100 members of the adult CP community, plus friends and families.

Finally, this month we are running a conference bringing together medical professionals, researchers, charities and members of the adult CP community to discuss what good practice looks like. We believe that things could and should be different and if we get people to talk about it, things can change.

For more information about Adult Cerebral Palsy Hub:
Visit adultcphub.org

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