There are a huge amount of cerebral palsy support groups in the UK, and we’ve compiled a list of them here.
Cerebral palsy is a group of lifelong conditions that affect co-ordination and movement. It’s caused just before, during or just after birth. It might happen as a result of a stroke, a birth injury, an infection in the brain, or being deprived of oxygen. It can affect people in a number of different ways, with varying severity, and is usually diagnosed in very early childhood.
Support groups for lifelong conditions can be hugely important to families and individuals. Some people use support groups to find impartial information and local recommendations for respite care or live-in care, whereas others are looking for emotional support and to connect with others who have similar experiences.
The Adult Cerebral Palsy Movement, also known as Up, was founded in 2016 by an adult with cerebral palsy and her physiotherapist. They were aware of the lack of support for adults with cerebral palsy, despite it being a lifelong neurological condition and affecting around 130,000 adults in the UK.
Formerly known as the Adult Cerebral Palsy Hub, it has four main aims:
· Raising awareness about where to find resources and how to get support
· Educating medical professionals further about the condition
· Community building among adults with cerebral palsy
· Campaigning and raising awareness with policy-makers about issues that people with cerebral palsy face
Started in 2013, CP Teens UK is run by people with cerebral palsy for people with cerebral palsy. The founder, Ellie Simpson, was finding herself increasingly isolated and struggling to find opportunities such as volunteering.
They support young people aged between 8 and 25, and aim to offer social and recreational opportunities such as boccia, meet ups and other events. They provide help and advice for young people and family support, as well as workshops and advocacy support.
Scope is one of the UK’s most well-known disability charities – they aren’t just a cerebral palsy support group. They provide information and support for disabled children, adults and families, and also campaign for changes in society.
Founded in 1952 by the parents of three disabled children, Scope has campaigned for equal access to education, employment support, and changing people’s attitudes towards disability. Their research has made major changes in policies that affect disabled people.
Scope also runs a range of charity shops, which raise money for the charity and encourage volunteering among the community. Their membership scheme allows people to join events, access an online community and get opportunities such as special discounts.
The charity has worked with famous names such as Nelson Mandela, Alex Brooker and Ben Elton.
Action Cerebral Palsy is a UK charity intended to educate parents, healthcare professionals, researchers and policy-makers. Their aim is for children and young people with cerebral palsy to receive timely and effective interventions, care and support.
Founded in 2016 from a group of specialist charities for children with cerebral palsy, Action Cerebral Palsy’s latest campaign focuses on raising awareness about signs of cerebral palsy in very young children and babies.
They have contributed to the NICE (National Institute for Health and Clinical Excellence) guidelines on cerebral palsy.
Cerebral Palsy Guide offers resources to individuals and families who are affected by cerebral palsy. Although this is a US organisation, the Cerebral Palsy Guide is full of information about the condition, and may still be useful for people looking for support in the UK.
They also offer some links to international online support groups.
Many excellent cerebral palsy support groups in the UK are smaller, regional groups. Some provide social activities, education, or grants for people with cerebral palsy and their families.
· CPotential in Muswell Hill offers support for children and young people with cerebral palsy and other movement disorders. They provide speech and language therapy, music therapy, occupational therapy and more.
· The Garwood Foundation supports adults and children in the London Boroughs of Croydon, Sutton and Bromley, through their school, day centre and residential home.
· BDCPS is based in Bedfordshire, and provides activities for young people and their families. They have a range of smaller, more local clubs too.
· Dame Vera Lynn’s Children’s Charity (DVLCC) supports children under five who have cerebral palsy, and works with families across the South East.
· White Lodge Centre in Chertsey, Surrey, offer clubs, therapy and advice for children, young people and adults.
· Whoopsadaisy supports children in Brighton and the surrounding area.
· Winchester and District Scope provides grants for people with cerebral palsy, and can signpost to local services.
· Cerebral Palsy Plus works with children and adults with cerebral palsy in Bristol and the surrounding area.
· Cerebral Palsy Midlands is an adult day service provider, offering activities such as dance, art, advocacy services and support to get out into the community.
· Cerebral Palsy Northamptonshire provides events and activities for individuals and families.
· Cerebral Palsy Today in Coventry and Warwickshire supports children and adults in the area, with social events, grants and advice from outreach workers.
· Steps Centre, based in Shepshed, Leicestershire, provides support and education for children with cerebral palsy and other conditions.
· Shropshire Cerebral Palsy Society is a grant-making charity that supports people in Shropshire, Telford and Wrekin.
· Cumbria Cerebral Palsy provides supportive living, family and individual support, day care and social activities.
· Supportability, based in Stockport and surrounding areas, offers support services at home and in day centres.
· The Hull and District Cerebral Palsy Society can provide grants, transport, legal support and can also signpost members to other necessary services.
· Lincolnshire Cerebral Palsy Society supports people across the county who have cerebral palsy, offering grants and advice about local services.
· Paces, based in Sheffield, is a specialist school for children with cerebral palsy and other neurological conditions, and also provides day provision for adults.
· Special Stars Foundation provides activities for disabled people and their families across Hull and East Yorkshire.
· Cerebral Palsy Cymru offers specialist therapies, family support and resources for children and young people up to the age of 18 in Wales.
· Cerebral Palsy Scotland supports and advocates for children and adults with cerebral palsy in Scotland. They also encourage community building among people with cerebral palsy.
If you’re looking for a support group in the UK, you may also find help from some groups not specific to cerebral palsy. These might include:
· Carers Trust, which supports and advocates for carers across the UK.
· Contact, which offers support and advice for families with disabled children.
· The Silverlining Charity, which supports people with brain injuries to take part in social activities and other exciting events.
Approximately 160,000 people have cerebral palsy in the UK, and around 1,800 children are diagnosed every year. Whether you’re a young person or adult with cerebral palsy, or a parent whose child has just been diagnosed, a local, national or online support group may help connect you to others who have had similar experiences.
Patient support groups are groups of people who share a diagnosis or similar condition. These groups offer people a chance to connect with others going through similar experiences. Support groups are usually a good place to learn more about a condition. Many support groups also work to raise public awareness or campaign for necessary changes.
Some people with cerebral palsy may benefit from speech and language therapy, physiotherapy, and occupational therapy. Cerebral palsy support groups can also signpost you to further services that may support you or your loved one. Cerebral palsy affects everyone differently, so people with cerebral palsy may not all need the same services.
Support groups can help people with cerebral palsy by connecting them with others who may have had similar experiences. They can also provide further information about their condition, social and recreational activities, and advocate with professionals and policy-makers about things that can improve their life and care.
There are a huge range of cerebral palsy support groups in the UK. Some are national, such as The Adult Cerebral Palsy Movement, and others are regional. We have compiled a list of cerebral palsy support groups on this page.
Get in touch with Tiggo Care today to see how we can help you or your loved one.