Action Cerebral Palsy

Action Cerebral Palsy

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I invite you to learn how to adapt the toys that your child wants or already has. (without spending a lot of money).
Remember to rate the course to upload more content
I invite you to learn how to adapt the toys that your child wants or already has. (without spending a lot of money).
Remember to rate the course to upload more content
Fix W-sitting position.

WBANDAGE reinforce correct pelvic joint positioning, enhance training of leg muscles function and assist with forming the walking reflex for children with cerebral palsy and everyone who needs.

https://www.amazon.com/dp/B08GLLVLLB?ref=myi_title_dp
Don't give to red nose give to Katnat free Disabled Equipment for disabled children
Researchers at Oxford University @NDCNOxford are seeking parents and guardians of children with cerebral palsy for an online survey of your experience of lockdown in the United Kingdom. If you are interested in participating in this study you can access the survey at: https://is.gd/cpathome or contact us [email protected]
New research project on sleep patterns of children with neurodisability and their siblings. Please consider participating! https://uclioe.eu.qualtrics.com/jfe/form/SV_2atRBVwSLWyQOG1
New research project on sleep patterns of children with neurodisability and their siblings. Please consider participating. https://uclioe.eu.qualtrics.com/jfe/preview/SV_2atRBVwSLWyQOG1?Q_SurveyVersionID=current&Q_CHL=preview
Are you a parent of a child aged 9 - 17 with cerebral palsy. Please consider participating in this research project;
If you are a parent of a child with cerebral palsy aged 9-17 or know someone who is, please consider participating in a University of Bristol research study looking at the link between CP, anxiety and everyday participation. For further details see https://www.actioncp.org/news. #cerebralpalsy Thanks
To all our followers, stay well and look after your children. Coronavirus advice for people with cerebral palsy;
Action Cerebral Palsy salutes all those living with cerebral palsy and all those who support them in the UK and across the world #worldcerebralpalsyday
After fighting to get CCG to reinstate Continuing healthcare, repsite care and physiotherapy plus hydrotherapy for 3643 days nearly 10 years today we have been told he is eligible

Action CP works towards improving public, professional and political awareness of the issues facing children and young people with cerebral palsies.

Our vision is that every child with cerebral palsy in the UK can reach their full potential in life through early intervention and intensive educational and clinical input appropriate to their needs throughout their growing years. We also aim to ensure that the families of children with cerebral palsy receive the support they need to sustain their children’s development and upbringing and promote

Operating as usual

APPG on Cerebral Palsy on Twitter 10/08/2021

APPG on Cerebral Palsy on Twitter

APPG on Cerebral Palsy on Twitter “Following her evidence to #APPGonCP in May on being the parent on a child with #cerebralpalsy, Dr Helen Hunt has spoken to @the__chez for @theipaper. Find out more here: https://t.co/3n0X6JE8U1”

05/08/2021

Please consider helping with the project below.
https://bit.ly/2WV6aZv
#CerebralPalsy #disability

Please consider helping with the project below.
https://bit.ly/2WV6aZv
#CerebralPalsy #disability

26/07/2021

Microsoft Forms

Do you have a child with cerebral palsy? Only 26% of parents receive info on CP when they get a diagnosis for their child. Was this your experience? We would like to hear from more parents of children with cerebral palsy about their child's health and educational provision to help us campaign on behalf of your children. Please take 10 minutes to complete our parent survey and pass on to your networks. Thank you! https://forms.office.com/r/38XiXPRZGc #CerebralPalsy @CP_Sport @MumsnetTowers @specialneedsps

Microsoft Forms

19/07/2021

Microsoft Forms

Are you a parent of a child/young person with CP? Please complete Action Cerebral Palsy's survey to help us campaign for better provision for your children https://lnkd.in/djUW2bg #cerebralpalsy #SEND #disabledchildren

Microsoft Forms

APPG on Cerebral Palsy on Twitter 24/06/2021

APPG on Cerebral Palsy on Twitter

The APPG on Cerebral Palsy particularly welcomes submissions from recent school students with cerebral palsy and their parents. Please see terms of reference for details.
https://connectpa.co.uk/appg-cerebral-palsy/ #cerebralpalsy #SEND

APPG on Cerebral Palsy on Twitter “The All-Party Parliamentary Group on Cerebral Palsy is calling for evidence from professionals and those with experiences of Cerebral Palsy across the UK. More info here: https://t.co/em1ege8It3 #APPGonCP”

[06/04/21]   In this Volunteers' week, Action Cerebral Palsy salutes all those kind people who have helped us with our work, from the amazing fundraisers and donors who have helped to raised much needed funds through donations and sponsored events, to those who have freely given their time and knowledge to support our campaigns and policy advancement work and to our valued Trustees and supporters. You are wonderful - thank you, thank you, thank you!

All-Party Parliamentary Group on Cerebral Palsy - Connect 04/05/2021

All-Party Parliamentary Group on Cerebral Palsy - Connect

APPG on Cerebral Palsy https://connectpa.co.uk/appg-cerebral-palsy/
Action Cerebral Palsy is pleased to report that the Government has responded to parliamentary questions tabled by two of the APPG’s officers concerning recommendations made in the first report. Vice-Chairs, Greg Smith MP and Dr Lisa Cameron MP, raised questions of the Department for Health and Social Care and the Department for Education. You can view the questions, alongside the responses from ministers at https://connectpa.co.uk/appg-cerebral-palsy/ .
In response to the APPG’s call to improve data collection on babies and children with cerebral palsy and other neurodisabilities, Care Minister Helen Whatley said:
'NHS England and NHS Improvement will be meeting in due course to consider the recommendations to improve early detection and treatment pathways for cerebral palsy set out in the report, ‘Early identification, intervention and pathways of care of infants and young children with cerebral palsy: The case for reform and investment’, published by the All-Party Parliamentary Group on Cerebral Palsy in March 2021.’
The APPG will continue to monitor progress in this area and awaits NHSE/I’s response to the report.

All-Party Parliamentary Group on Cerebral Palsy - Connect The All Party Parliamentary Water Group brings together Parliamentarians and stakeholders from across the UK water sector to discuss the issues impacting the sector.

All-Party Parliamentary Group on Cerebral Palsy - Connect 19/04/2021

All-Party Parliamentary Group on Cerebral Palsy - Connect

APPG on Cerebral Palsy. Action Cerebral Palsy is delighted that the Call for Evidence for the APPG on Cerebral Palsy sessions 3. Education, Health and Care Plans (EHCPs) for children with cerebral palsy (25 May, 2 p.m.) and 4. Best Practices in Teaching and Learning for children with cerebral palsy (6 July, 2pm) has now been released.

Please see https://connectpa.co.uk/appg-cerebral-palsy/
for further details and terms of reference. Please share this with all interested networks and stakeholders.

All-Party Parliamentary Group on Cerebral Palsy - Connect The All Party Parliamentary Water Group brings together Parliamentarians and stakeholders from across the UK water sector to discuss the issues impacting the sector.

13/04/2021

Adolescent Disability, Education, and Work

The University of Warwick are looking for post-16 students with cerebral palsy to participate in a research project on transition https://warwick.ac.uk/fac/soc/sociology/research/currentresearch/educationalpathways/.

Adolescent Disability, Education, and Work This page hosts the Leverhulme-funded research project "Educational Pathways and Work Outcomes of Disabled Young People in England" led by Dr. Stella Chatzitheochari

25/03/2021

On International Cerebral Palsy Awareness Day, Action Cerebral Palsy is delighted to share the report of the first sessions of the All-Party Parliamentary Group on Cerebral Palsy which calls for streamlined national pathways of care for infants and children at risk of cerebral palsy and for better public and professional awareness of signs of the condition. To view the report, see https://tinyurl.com/petvyewf
#cerebralpalsy #cerebralpalsyawareness #StampOutTheGap #earlyintervention #APPGonCP

On International Cerebral Palsy Awareness Day, Action Cerebral Palsy is delighted to share the report of the first sessions of the All-Party Parliamentary Group on Cerebral Palsy which calls for streamlined national pathways of care for infants and children at risk of cerebral palsy and for better public and professional awareness of signs of the condition. To view the report, see https://tinyurl.com/petvyewf
#cerebralpalsy #cerebralpalsyawareness #StampOutTheGap #earlyintervention #APPGonCP

22/03/2021

StimCP: We are looking for children with Cerebral Palsy aged 10-16 for a study to improve arm and leg movement. For more info please click here or email the research team at [email protected]

StimCP: We are looking for children with Cerebral Palsy aged 10-16 for a study to improve arm and leg movement. For more info please click here or email the research team at [email protected]

Help raise £3000 to Providing equipment to help disabled children improve there motor skills & future development 10/03/2021

Help raise £3000 to Providing equipment to help disabled children improve there motor skills & future development

https://www.justgiving.com/crowdfunding/nathaleneandkatiecpfoundation

Help raise £3000 to Providing equipment to help disabled children improve there motor skills & future development Weʼre raising money to Providing equipment to help disabled children improve there motor skills & future development. Support this JustGiving Crowdfunding Page.

Sign now to demand care parity for adults with Cerebral Palsy 26/02/2021

Sign now to demand care parity for adults with Cerebral Palsy

Action Cerebral Palsy is proud to support Adult CP Hub's campaign to raise awareness of the challenges and inequalities facing people living with cerebral palsy. Please sign the petition!
#StampOutTheGap https://tinyurl.com/vn9fj5mh
#cerebralpalsy #cerebralpalsyawareness

Sign now to demand care parity for adults with Cerebral Palsy I've just signed this petition to #StampOutTheGap calling for care parity for adults living with Cerebral Palsy in the UK, will you add your name too?

Call for evidence - Committees - UK Parliament 22/02/2021

Call for evidence - Committees - UK Parliament

Do you work with children with cerebral palsy or are you a parent of a child with cp? The Government is calling for evidence on the role of public services and the charity sector in addressing child vulnerability. Please see https://committees.parliament.uk/call-for-evidence/408/the-role-of-public-services-in-addressing-child-vulnerability/

Call for evidence - Committees - UK Parliament Call for evidence

18/01/2021
youtube.com 17/12/2020

Pathways of Care and Centres of Excellence

The second APPG session on Cerebral Palsy - Early Intervention and Pathways of Care took place yesterday, chaired by Mary Foy MP. This session heard evidence from experts about the need for better pathways of care and centres of excellence for infants and young children with cerebral palsy and their families. The deadline for submissions on this topic is December 23rd. For details see wwwactioncp.org. The session can be viewed at https://www.youtube.com/watch?v=H7NS3Gl_pUw&feature=youtu.be. #cerebralpalsy #childhooddisability #earlyinterventionworks

youtube.com This meeting examined standard national pathways of care and centres of excellence for infants and young children with cerebral palsy. We heard from clinicia...

bpna.org.uk 16/12/2020

British Paediatric Neurology Association

Action cerebral Palsy has been asked to share this letter to parents by the British Paediatric Neurology Association:
Dear Parents and Carers
We have asked this charity to help us to contact you so that we can gain your valuable views on the hospital doctors providing medical care for your child.
We are writing from the British Paediatric Neurology Association. Paediatric Neurologists are specialist doctors who care for children with a range of neurological disorders including children with conditions affecting their brain, nerves, muscles and spinal cord [eg neuromuscular disorders, epilepsy etc]. We would like to hear about the impact of the Consultant paediatric neurologist in your child’s care and would be very grateful if you could complete our survey. It will take you about 3-5 minutes.
https://www.surveymonkey.co.uk/r/W3ZZMJL
Please tell us what you think...
Take this survey powered by surveymonkey.com.
There is pressure to the reduce the length and depth of training paediatric neurologists receive. We are concerned that this may have a detrimental effect upon the level of care children with complex neurological conditions will receive in the future. We would like to know what you think.
We think it is important that the views of children, young people and their carers are taken into account when making decisions about the services that are provided, including the level of training and expertise of the doctors who will lead on providing care. We value your opinion and we will use the results of the survey to identify how important it is for parents and carers of children with neurological disorders feel it is to have access to paediatric neurologists with highly specialist training.
Many thanks for your time.
Kind regards
Philippa Rodie
Executive Director
British Paediatric Neurology Association (charity number 1159115)
[email protected] www.BPNA.org.uk

bpna.org.uk British Paediatric Neurology Association

[12/08/20]   The new All-Party Parliamentary Group on Cerebral Palsy is holding the second of two virtual sessions which will examine the need for standard national pathways of care and centres of excellence for infants and young children with cerebral palsy on Wednesday 16 December at 2 p.m. To view this session please contact [email protected]
We welcome organisations who wish to contribute written evidence and the deadline for submissions for our report to Parliamentarians is Wednesday 23 December. We welcome input from any interested stakeholder on the topics below. This evidence will be used to inform the recommendations the APPG makes to Government.
We therefore welcome concise responses that focus on policy recommendations as well as key facts and figures.
Submissions:
Please limit your submission to two sides of A4 and send with the subject line: APPG on Cerebral Palsy – call for evidence, to [email protected]
The key themes we seek evidence on are:
· The importance of surveillance of infants at risk of cerebral palsy, the early identification of signs of cerebral palsy and onward referral for assessment and intervention.
· Why infants at risk of cerebral palsy are not being referred quickly enough for assessment and intervention.
· The state of health visiting, primary health care and local paediatric services, and their role in the early identification, referral and intervention of infants and young children at risk of cerebral palsy, and how their services could be improved.
· Workforce skills and knowledge of cerebral palsy and abnormal motor development in primary healthcare, health visitors and early years practitioners.
· How could communication and support networks around the family during the assessment and diagnostic process and beyond be strengthened?
· Why and how the Cerebral Palsy in Children and Young People Quality Standard [QS162] October 2017 should be implemented as standard across all regions and the impact of this not being the case on children with or at risk of cerebral palsy and their families.
· What changes are required so that care for infants and young children at risk of, or with, cerebral palsy and their families provides a continuum of swift and seamless pathways between local paediatric services and centres of excellence, in which multi or trans-disciplinary teams of cerebral palsy specialists work together on assessment, monitoring, therapy and treatment.
· Why it is crucial that such pathways are centrally funded, rather than reliant on regional commissioning models.
· What the Government can do to ensure national standard best practice pathways of care for all infants and young children at risk or with cerebral palsy across the UK
#cerebralpalsy #earlyinterventionworks #earlyintervention #childhooddisability

rcslt.org 07/12/2020

RCSLT - The Royal College of Speech and Language Therapists

The Royal College of Speech and Language Therapists (RCSLT) is concerned about how the COVID-19 pandemic and in particular the UK-wide lockdown (March-June 2020) has affected people’s access to speech and language therapy.
To understand the issue better and so we can all work together to advocate for the speech and language therapy you need, the RCSLT has just launched a survey about how the pandemic has affected you. They want to hear from you on three key questions:
· How did lockdown affect your speech and language therapy?
· What impact did this have on you?
· What are your thoughts about the future?
By filling out the survey, you can make your voice heard and help us to influence Governments across the United Kingdom on the need for you to have access to speech and language therapy services and the difference it makes to your life.
The survey is open until 5pm on Friday, 5th February 2021 and can be accessed via this link: https://www.rcslt.org/learning/has-coronavirus-affected-your-access-to-speech-and-language-therapy#section-1 #cerebralpalsy #sltsurvey

rcslt.org The RCSLT is the professional body for Speech and Language Therapists. Our role is to provide leadership for the speech and language therapy profession

actioncp.org 20/11/2020

Action Cerebral Palsy

An excellent first session of the APPG on Cerebral Palsy chaired by Mary Foy MP and Paul Maynard MP https://www.youtube.com/watch?v=vG4YQ7ER23c&feature=youtu.be Many thanks to all who took part and supported. The next session on pathways of care and centres of excellence will take place on Wednesday 16th December at 2pm. Please contact [email protected] if you would like to attend. Deadline for written evidence for both sessions is December 23rd 2020. See www.actioncp.org for terms of reference.
#cerebralpalsy #earlyintervention #childhooddisability

actioncp.org Action CP works towards improving public, professional and political awareness of the issues facing children and young people with cerebral palsies.

actioncp.org 18/11/2020

Action Cerebral Palsy

Today is the first of two APPG sessions which will examine early identification and intervention for infants with or at risk of CP. Thank you to Mary Foy MP and Paul Maynard MP for co-chairing, the officers, speakers and expert witnesses and all those who are supporting this important work on behalf of children with or at risk of cerebral palsy and their families. If you wish to view the session please contact [email protected] #cerebralpalsy #EarlyIntervention www.actioncp.org

actioncp.org Action CP works towards improving public, professional and political awareness of the issues facing children and young people with cerebral palsies.

actioncp.org 16/11/2020

Action Cerebral Palsy

It's not too late to register to view the first of two virtual APPG sessions on cerebral palsy, which will examine early identification, assessment and intervention for infants at risk of cerebral palsy, which will take place on Wednesday 18th November at 2pm. If you would like to join this session as an observer, please contact [email protected]. Details of the call for evidence (deadline December 23rd) and terms of reference at www.actioncp.org #cerebralpalsy #earlyintervention

actioncp.org Action CP works towards improving public, professional and political awareness of the issues facing children and young people with cerebral palsies.

actioncp.org 11/11/2020

Action Cerebral Palsy

Action Cerebral Palsy is pleased to announce that the first of two virtual APPG sessions on cerebral palsy, which will examine early identification, assessment and intervention for infants at risk of cerebral palsy, will take place on Wednesday 18th November at 2pm. If you would like to join this session as an observer, please contact [email protected]. Details of the call for evidence and terms of reference at www.actioncp.org #cerebralpalsy #earlyintervention

actioncp.org Action CP works towards improving public, professional and political awareness of the issues facing children and young people with cerebral palsies.

Videos (show all)

Early Intervention
Sunday Politics Wales: Cerebral Palsy Register

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