-
Disability Pride 2025
What does Disability Pride mean to me? Sara Edwards CP Specialist When I first heard the term Disability Pride, I was confused by its meaning. In June we celebrate the LGBTQIA+ community and hold Pride events. I assumed Disability Pride was an extension of this, celebrating the LGBTQIA+ disabled community. In 2024 I was…
-
Take the CQC's Short Survey to Help Improve health and Social Care
Use this form to tell us about: an experience of care - it can be good or bad a concern about a service you work for Give feedback on care - Care Quality Commission Your feedback helps make care better We use what people tell us to understand the quality of care they get from services like care homes, care agencies,…
-
World Wellbeing Week
On the last day of World Wellbeing Week, here is a simple and effective technique to help manage negative thinking. We live in a world filled with uncertainties and it's all too common to be overwhelmed by stress and anxiety. This state of being can often lead to negative views of feeling worthless or unloved. Emotions…
-
Creative Pathways is back for 2025!
Creative Pathways is back!! In association with Scope and The Rosie Jones Foundation. 28 & 29 August @ Here East, London. FREE!!! We’re back with another amazing lineup of creative professionals to move and inspire you!! Including the incredible Rosie Jones! If you’re between 11-19 (secondary & above) and have cerebral…
-
Why the Moro (Startle) Reflex Persists in Cerebral Palsy (CP)
A blog by Liz Whitely of Liz Whitely Counselling and Psychotherapy Understanding the Startle Reflex The startle reflex, which is also known as the Moro reflex, is a natural response that we often see in newborns. When a baby suddenly hears a loud noise or feels unexpected movement, they instinctively stretch out their arms…
-
British Pediatric Neurology Association- Approaching Children's Tone Seminar
On Thursday 12 June and Friday 13 June, I attended a two-day Public Patient Involvement (PPI) called Approaching Children’s Tone. It was hosted by the British Paediatric Neurology Association (BPNA). I was invited as a professional with lived experience of children presenting with tone concerns and to contribute to this…
-
Publication of Commissioning Framework for Children and Young People with Cerebral Palsy
After working with NHS England and other key stakeholders, the most important of which were families, Scope is very pleased to announce that the Commissioning Framework for Children and Young People with Cerebral Palsy was published at the start of May. The framework can be found here: NHS England » Commissioning framework…
-
Cerebral Palsy and Early Menopause Article
Cerebral Palsy and Early Menopause – Sara Edwards-Cerebral Palsy Specialist When it comes to women's health, many topics remain shrouded in silence, particularly for those living with disabilities. As someone with cerebral palsy and epilepsy, my journey through gynaecological health has been fraught with…
-
CP Network and Cerebral Palsy Adult Advice UK. Wrexham Meeting
On Monday 12 May 2025, Scope's CP Network and CPAAUK held the first face to face gathering in Wrexham. It was great to meet those who attended. We had meaningful conversations about CP and life in general. Attendees enjoyed the session and left wanting to share news of the group with friends and colleagues in their…
-
Mental Wellbeing and Disability
Mental Health & Disabilities Mental health is often left out of the disability conversation. Mental illness is the leading cause of disability worldwide, affecting 264 million people. Mental health conditions are a common by-product of living with other forms of disability. Mental health should be a crucial part of…
-
Do You Have Difficulty Having Sex Due to Tight Muscles?
No subject is off-limits for Sam at Inclusfit! This subject was brought up by a few of my PT clients. Those with spastic cerebral palsy have high spasticity in their muscles. This means we get tight muscles very quickly and this can also mean we get a lot of pain. This also limits our movement & what we can do. Those with…
-
CP Network and Epilepsy Action Collaboration-Interview with Jan Paterson Epilepsy Action
As part of Cerebral Palsy Awareness month, we are discussing CP and co-existing conditions. Janet Paterson from Epilepsy Action Cymru is hosting an insightful presentation on March 12 2025, "Epilepsy-It's not one type of seizure." Please register at to attend this event. I recently interviewed Jan where we discussed her…
-
Cerebral Palsy -social media advice page for young people
It's natural for teenagers and young adults to want to be part of a friendship group or community. Some find this networking activity an easy process, but for others it can be particularly difficult to find where they belong. Some young people with cerebral palsy can face challenges with building social networks. They…
-
Assistive Equipment & Bespoke Solutions - Sharing Sources of Support
Able2Wear Wheelchair Clothing – Able2wear supplies specialised wheelchair clothing and accessories and have a unique collection of garments that ranges from waterproofs to underwear. They can also make something unique to suit your needs. Allied Mobility – Allied Mobility is the leading wheelchair accessible vehicles…
-
The world of inaccessible footwear
This month, for our CP Network theme was fashion. We discussed the difficulty of footwear and cerebral palsy. Samantha Sekirsky joined us. She is studying a master’s in Strategic Fashion Marketing. If you wear Ankle Foot Orthotics (AFOs), Knee Ankle Foot Orthotics (KAFOs), or are generally unsteady on your feet! You know…
-
Hi, my name is Rosies_Dad! Just received a CP diagnosis for my daughter, any book recommendations?
Yesterday I took my twin daughters to Hospital for a routine physio appt and was blind sided with a Cerebral Palsy diagnosis for Rosie it now makes sense why she can’t walk. My wife is away with the Army so wasn’t there is person. We are now waiting to go back for more physio and hopefully some sort of walker. Can anyone…
-
Experience of Tizanidine vs Baclofen
Background: When i was a child i used to take delicious sugary like raspberry but no raspberries in it bacolfen. Transitioned to boring tablets and then off everything but recently increasing stiffness. Did a brief search and obviously increasing physical activity is a must (got appointment next week), but does any have…
-
Turning a Mini Passion into a Big Dream
This month, we’re celebrating amazing people in CP Network Meet Sam, 28, from Manchester. Sam runs an art business called sh3dart and has been supported by The King’s Trust Enterprise Programme. He’s even been featured in the London Daily News and on the King’s Trust Blog. Lucy: Hi Sam! Thanks for joining us. Can you tell…
-
Hello :)
Hello everyone, I wanted to introduce myself as I joined this community today. I am 33 years old and I have Spastic Cerebral Palsy. I found out about having CP when I was 24 years old. It affects my right side of my body, mostly pain, spasms and stiffness in my ankle, calf, lower back and hips. I am also Dyslexic. For the…
-
Join us at CPotential for Intensive Therapy during the Summer Holidays:
Join us at CPotential for Intensive Therapy during the Summer Holidays: Weeks 1 and 2 – Monday 28th July to Friday 8th August Weeks 3 and 4 – Monday 11th August to Friday 22nd August. Summer intensives are generally 10-day blocks, starting Monday 28th July or Monday 11th August. However, if you are hoping to book a shorter…
-
Oldest person with CP?
We have been asked: "I
have had Cerebral Palsy since Birth. I am now 78 Years old and will be 79 in
July. Could you tell me if I am the oldest person with thus condition. If not
can you tell me the age of the longest living survivor of this condition?" I think the oldest person we interviewed for
Speaking for Ourselves was…
-
School Staff training
I'm a senco at a mainstream school. We have an 11 yr old in a wheelchair with cerebral palsy. New staff with no experience/training. Any idea where we can get staff training for moving and handling young adults and/or wheelchair training? He does not need a hoist - South west UK
-
Could You Help with Standing Frame Research?
Hi! I am a researcher who is looking to co-design research around standing frames. It would help me to know about your experiences of standing frames. How did your children find using a stander to begin with? How is it now? How was it for you as a caregiver when you were introduced to supporting your child to use a…
-
‘They get more confrontational’: A painter’s self-portraits capture life, and art, with cerebral pal
By Leah Dolan, From CNN Lucy Jones painted her first nude self-portrait at 50. She was in New York with her husband Peter Leach, she said, when he “took a picture of my backside. I thought, ‘Well I don’t look too bad from the back, so maybe I’ll paint it!’” Jones is sitting on a wooden chair the middle of a white-washed…
-
Please sign our open letter to the Secretary of State for Health and Social Care,
Tell the government: we need action now, not words Thank you for your continuing interest in the work of The Neurological Alliance.Earlier in July, we published the results of the 2024 My Neuro Survey, our national survey of people affected by neurological conditions, including adults, children and carers. The message is…
-
Participants needed!
Are you physically disabled? If so, please consider taking time to be a participant for this research project. Attached is a QR code which will ask you some questions and if you are eligible and happy to be interviewed that would be appreciated to contribute to physically disabled daily lives.
-
UPs response to the 10 year Health Plan
As many of you will have seen, the Government’s 10-Year Health and Disability Plan was recently published. While there are some positive developments, the plan does not meaningfully acknowledge the needs or lived experiences of adults with cerebral palsy—a gap that we believe needs urgent attention. As a member of the…
-
Disability Pride '25
As we celebrate Disability Pride—a celebration that is as much about recognising our strengths as it is about acknowledging a shared journey. I want to discuss what Disability Pride means, why it matters, and how each of us can contribute to a more inclusive society. What Is Disability Pride? Disability Pride is more than…
-
Ageing and cerebral palsy
Hello I’ve just joined this community and I’m hoping to discuss ageing and Cerebral Palsy. As an adult I feel support and information for people with Cerebral Palsy as they get older is lacking. I’ve noticed a lot of changes such as more memory loss, increased pain, being unable to do tasks as well as I’ve got older.…
-
Free London Art Exhibition in July
'Fruiting Bodies' - Free Art Exhibition by Yasmine Rana Yasmine Rana is a traditional artist from London, UK. She was born with cerebral palsy and has lived over half of her life with other chronic illnesses as well. These impact not only the subject matter of her work, but also how she paints, making each piece a unique…
-
How an eBay find has helped to transform the life of a man from Tyneside living with cerebral palsy
Cory Hall has had treatments and surgery to try to ease his clenched fist, but none solved the issue until a budget find on eBay changed his life. Watch on ITV
-
Government SEND Review
As part of their wider SEND review, the Government is considering reforms to EHCPs. This potentially could change how needs are identified and supported, particularly in mainstream schools. If you are a parent of a child with CP who has an EHCP or a young person with CP who has an EHCP, we would love to hear what your EHCP…
-
CP Network meets Matt Stabb
Lucy had the pleasure of interviewing CP network member Matt Stabb. He has written a book about living with Cerebral Palsy. Lucy: Hi Matt, thank you for speaking with us about your new book, Keep on Keeping on: Cerebral Palsy. It’s about your life living with Cerebral Palsy. As someone with CP myself, it was refreshing to…
-
Children with Speech Issues Risk Poor Mental Health.
Children struggling with their speech and language are at greater risk of developing mental health problems like anxiety and depression, the charity Speech and Language UK has warned in a report seen exclusively by the BBC. BBC News Speech and Language Issues Related to Poor Mental Health
