#LetsTalkCerebralPalsy for CP Awareness Month — Scope | Disability forum
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#LetsTalkCerebralPalsy for CP Awareness Month

Richard_Scope
Richard_Scope Posts: 3,615 Scope online community team
edited March 2022 in Cerebral palsy

March is Cerebral Palsy Awareness month, which is dedicated to the 17 million people diagnosed with cerebral palsy around the world. 

Young person RaceRunning on track

Cerebral palsy affects many people in the UK and is more common than some people realise. Around 2-2.5 in every 1000 children in the UK are born with cerebral palsy and there are an estimated 130,00 adults and 30,000 children with cerebral palsy in the UK. 

For Cerebral Palsy Sport, CP Awareness Month is an opportunity to raise awareness about cerebral palsy and the work carried out by the charity.  

CP Sport is the country’s leading national disability sports organisation improving the health and emotional wellbeing of children and adults with cerebral palsy through physical activity, and engaging the community in a number of programmes and interventions. 

It is well recognised that sport provides many benefits socially, physically and mentally and this March CP Sport is highlighting the impact sport can have on an individual’s day to day experience of cerebral palsy as well. A number of members, ambassadors and athletes with cerebral palsy have shared their personal experiences saying that regular exercise and developing strength can have a variety of effects for them, which include improved handwriting, reduced spasms, or helping them sit up unaided. Some said that lockdown and a drop off in regular activity has made their cerebral palsy ‘worse’. CP Sport will be showcasing these personal insights throughout the month on social media.  

Cerebral Palsy Sport is also commencing its celebrations of 20 years of the charity and will be sharing more about its journey over two decades and hearing first-hand accounts about the impact it has had for individuals and families involved in its programmes through participation, volunteering, fundraising and working for the charity.  

Cerebral palsy and physical activity 

Cerebral palsy is the most common form of physical disability in the world and affects muscle control, coordination and motor skills. In addition to a range of physical impairments, many people with cerebral palsy report feelings of isolation and exclusion from activities that can impact well-being and self-belief. 

People with cerebral palsy are significantly more likely to encounter barriers that can prevent them from accessing sport which can make them feel marginalised, isolated and disengaged from their peers and the local community. Typical barriers include lack of accessibility and inclusive opportunities, lack of support and a shortfall of skills from professionals around enabling people with cerebral palsy to engage in sports. 

Those with cerebral palsy and other physical disabilities might be very passionate about sports and enjoy watching and supporting a team, but may have had very few real opportunities to participate. As children, they may have negative experiences of being excluded from taking part, or they are the last person to be picked or their participation is tokenistic which can leave them feeling isolated and excluded.

The inclusive work of CP Sport aims to address these disadvantages by enabling people to engage in a range of adapted activities that seek to maximise potential and improve skills and well-being. Every year CP Sport gives hundreds of children, young people and adults with cerebral palsy the chance to access physical activity and social interaction that is an important part of sport. All this is only achievable because of the kindness and generosity of organisations and individuals who support the charity. 

The impact of COVID-19 

It is important to consider those who have felt too anxious, scared or unable to exercise during the pandemic, something many of us have been able to confidently keep doing or even start doing. Exercise has been consistently encouraged during the pandemic as an essential part of our health and wellbeing. However, for disabled people, like individuals with cerebral palsy, this is not so simple. They may need specialist equipment, a coach to support them or may have been shielding.  

Evidence shows that disabled people’s lives have been the hardest hit by COVID-19. Accounting for two-thirds of the deaths from coronavirus, this is a national crisis for public health and one that is being felt most sharply by disabled people. It has led to many disabled people, who count for one in five of the population, feeling more fearful and ignored. (Activity Alliance Annual Disability and Activity Survey 2020-21)

Lockdown has also highlighted the impact a decrease in exercise can have on an individual's cerebral palsy. One member told us that less regular walking has caused an increase in ankle and hamstring pain when trying to walk any distance. Another member said;  

“I noticed after the first lockdown spending 12 weeks inside shielding and only using my chair a minimal amount, I really struggled to push my chair and my hand function was worse as I wasn’t used to using the muscles to that extent anymore. It took a good few months to build that back up”. 

During lockdown, CP Sport has continued to work hard to keep people with cerebral palsy active and connected through free virtual cafes and fitness classes, virtual challenges with expert coaches and speakers, and equipment rental services with ongoing support. The feedback from participants and families has been extremely encouraging;

"The opportunity to hire a RaceRunner was amazing. I would never have had the opportunity to try RaceRunning without this service and really picked up the hang of it after two hours!"
"Lucas has joined the virtual cafes which have been brilliant to meet up with other children with cp in a safe and welcoming environment.”
"Our daughter found her smile again and gained confidence from being part of an organisation that really cares."

A full list of events can be found on the CP Sport website.   

Following the announcement by the Prime Minister on 22nd February, CP Sport COO Adi Fawcett said:

“We were pleased to see the announcement from the Prime Minister on 22nd February setting out the roadmap towards the end of lockdown, and to see sport and physical activity featured during each of the 4 steps towards 21 June and the removal of all legal limits on social contact. We will continue with our planning towards the delivery of events on the ground, taking into account the government and national governing body advice and work with our partners to deliver events when it is safe and appropriate to do so. In the meantime, we will continue to encourage everyone to be active and stay socially connected through our virtual classes, cafes and events. We look forward to seeing everyone again and supporting our community in confidently returning to sport.” 

Support Cerebral Palsy Sport this March  

Help CP Sport encourage and provide more opportunities for more people with cerebral palsy to be active at home and have the confidence to return to safe spaces after lockdown so they can enjoy all the social, emotional and physical benefits of sport whether that's virtually or together.  

CP Sport are encouraging members of the public to get involved in ‘Twenty Miles This March’ and help the charity reach and encourage more children and young people with cerebral palsy into being physically active.    

Anyone can take part. 20 miles of running is the challenge for the month of March, however, participants can tailor it to suit them whether that’s walking, cycling, pushing or  going for a different distance. There is a whole month to complete it and for those people who are on Facebook, they can simply join the event  Facebook group and follow the steps to start fundraising. Alternatively for those not on Facebook, it’s easy to set up a Just Giving page or simply make a donation to CP Sport. There is also a 'club' on Strava here. Participants can get a free t-shirt and if they raise £200 or more, a medal.  

More activity this CP Awareness Month

Green is the colour people recognise as being associated with cerebral palsy awareness so show your support this March by proudly wearing green.  

CP Sport is working in partnership with Scope for virtual cafes and the Bobath Centre for the Twenty Miles This March Fundraiser. This CP Awareness month Scope is talking about what living with CP is like in 2021, jobs, education, love, parenthood. Join the conversation on the online community and use hashtags, #LetsTalkCerebralPalsy #CPAwarenessMonth.

Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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