Georgia and Rachel are both some of the founding members of AbleOTUK, last year in October the hosted a twitter campaign to explain ways they do occupations differently because of the impact of their cerebral palsy.

This year they have sought out other occupational therapists with lived experiences of cerebral palsy, from around the world, having set up a WhatsApp group for OT’s with lived experiences of cerebral palsy, some in the group have worked on videos and social media content for this years world cerebral palsy day.

Thought-out the day information about cerebral palsy will be shared on AbleOTUK’s twitter and instagram, along with a video made to celebrate this years theme of accessible technology solutions .

Millions of Reasons for accessible technology solutions

World Cerebral Palsy Day on 6 October was created by the Cerebral Palsy Alliance in 2012 and now brings together people living with cerebral palsy, their families, allies, supporters and organisations across more than 100 countries. All with the aim to ensure a future in which children and adults with cerebral palsy have the same rights, access and opportunities as anyone else in our society.

 World Cerebral Palsy day Team CP OT take over #BeAnAbleOTUKally

Team CP OT have made a video taking about some accessible solutions they personally use both at work and in their home life, to manage the impact of cerebral palsy.

Be an AbleOTUK ally is a running campaign members of AbleOTUK have used to highlight the need for better allyship within the profession. As unfortunately those in the profession relatively report ableist views and actions by colleagues.

Allyship the status or role of a person who advocates and actively works for the inclusion of a marginalised or politicised group in all areas of society, not as a member of that group but in solidarity with its struggle and point of view and under its leadership: Genuine allyship does not come with special recognition—we do not get awards for confronting issues people have to live with every day. Dictionary.com

Cerebral Palsy Facts

Cerebral palsy (CP) is the umbrella term used for a heterogeneous group of etiologies that occur to a developing fetal or infant brain. It is a condition that affects muscle control and movement. It is usually caused by an injury to the brain before, during or after birth, but there may be no obvious single reason.  The main causes include: infection in the early part of pregnancy, lack of oxygen to the brain, abnormal brain development and a genetic link but this is quite rare.

Types of cerebral palsy include; Dyskinectic, Ataxic, & Spastic which can impact  all or parts of the body Monoplegia (1 limb affected) Quadriplegia (4 limbs affected) Hemiplegia (1 side of the body affected) Diplegia (2 limbs affected)

CP: Associated Conditions – Some people may have associated conditions; while others may not. These can include: Learning Difficulty, Epilepsy, Hearing Impairment, Visual impairment, Problems with sleep, Communication Difficulties, Feeding Difficulties, Drooling, Problems with toileting, Challenging Behaviour, and Periventricular Leukomalacia (PVL)

So how might CP impact a person’s engagement in occupations?  

Mental health – A Recent studies have shown adults with cerebral palsy have a higher risk of experiencing impacts on their mental health, and that those who work in the field need educating on this fact.  

Cerebral Palsy & Mental Health

 “It is very important for the CP community to be very clear when they seek (mental health) therapy of any sort to educate the provider about the scope of CP of their functioning. Clarify issues that are related to CP and that are separate. Become your own advocate and educate your providers.” Isabella Shultz, PhD

Fatigue and tiredness can have an impact on those with CP.  Remember to conditioner this when working alongside someone with CP. Fatigue is:  becoming easily tired, having no energy, being exhausted, losing stamina during physical activity. Walking or pushing a wheelchair could make a person feel fatigued more quickly. Signs of fatigue include; muscle aches or cramps; irritability or anger; feeling sleepy; not being able to concentrate. 

Ageing and CP still needs some research but here are some of the known impacts. https://www.scope.org.uk/advice-and-support/ageing-and-cerebral-palsy/#Problems-people-with-CP-report-as-they-get-older-click

Some long-term effects of ageing and CP can include: Increased levels of pain and discomfort #Osteoarthritis (pain and stiffness in the joints), Increase in spasms, Increase in contractures (shortening of muscles), Tight muscles, Digestion problems, New or increased back pain, Incontinence. Scope have also found that people with cerebral palsy often find that recovery after an injury or illness can take much longer as you get older https://www.scope.org.uk/advice-and-support/ageing-and-cerebral-palsy/

Cerebral Palsy is often thought of as a childhood condition,  with resources for support stopping once a person becomes an adult. This is now being looked at by an all party parliamentary group.  Lead by Two MP’s with lived experiences of CP https://www.parallelparliament.co.uk/APPG/cerebral-palsy

In the UK an All Party Parliamentary Group for Cerebral Palsy was first registered: 16/12/2020. It’s aim is to provide a forum for Parliamentarians to better understand the challenges faced by individuals and families affected by Cerebral Palsy. Action Cerebral Palsy lauched strategy and impact report in April 2022 which sets out its aims to work collaboratively across the public, private and third sectors to #improve awareness and understanding of cerebral palsy. – read it here. 

Click to access ACP-Strategy-and-Impact-Report-2022-2027.pdf

Blog post written by Rachel Booth-Gardiner @OT_rach