Action Cerebral Palsy

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

Operating as usual

03/06/2024

Our thanks to David Kirby and all of the patrons of The White Horse for your generous fundraising efforts for Action Cerebral Palsy.

Photos from Action Cerebral Palsy's post 14/05/2024

Tuesday Gratitude to our fearless fundraiser, Amy Simpson, who is back on the ground after completing a tandem skydive on Saturday. In the process, Amy has celebrated her goddaughter, marked a milestone birthday and raised an astounding £800 for Action Cerebral Palsy. If Amy has inspired you to get involved, please get in touch!
https://www.gofundme.com/f/im-raising-money-for-action-cerebral-palsy

Donate to Supporting Action Cerebral Palsy, organized by Kath Jensen 11/04/2024

We are very grateful to our fundraisers, Kath Jensen and David Cross, who are going to be running an incredible 100km in July's Race to the Stones for Action Cerebral Palsy. To warm up, Kath has decided to run this Sunday's Manchester Marathon. Please give her a big cheer if you are there on Sunday.

Donate to Supporting Action Cerebral Palsy, organized by Kath Jensen In July I will be joining David Cross, my trail running buddy in tackling the 100k Race T… Kath Jensen needs your support for Supporting Action Cerebral Palsy

Wizzybug - Designability 04/04/2024

Calling all parents of young children with physical disabilities. Did you know your child may be suitable for a FREE Wizzybug Powered Wheelchair? Wizzybug is provided Free of Charge by the charity Designability to children all over the UK. It is suitable for children with mobility challenges from the age of 14 months.
It is designed specifically for young disabled children to give them greater independence, freedom and choice but especially lots of fun! Families can apply to the scheme by completing the application form on our website. Appointments take place at our HQ in Bath or the William Merritt Centre near Leeds. We also have an Access Fund so that families on low income can apply for help with the cost of attending their appointment, including overnight accommodation if required.
Wizzybug is easily adjusted as your child grows so you can keep it for as long as it is safe and suitable for your child. It is then returned to us to be refurbished ready for another family to enjoy.
More information is available on our website and follow us on social media to see lots of lovely clips of children whose lives have been transformed by having a Wizzybug. https://designability.org.uk/assistive-solutions/wizzybug/

Wizzybug - Designability Wizzybug is a powered wheelchair for disabled children under 5. It helps those with any condition or developmental delay that affects their ability to walk.

25/03/2024

Calling families affected by . For month, Action Cerebral Palsy wants to know, despite all the challenges, what has worked well for you across statutory and voluntary services so we can share and celebrate best practice where it exists. Please contact us at [email protected] with your story and where you live. Thank you!

15/03/2024

AAction Cerebral Palsywere delighted to be at the excellent conference yesterday and to present on Cerebral Palsy and Early Identification. Our health visitors are a vital safety net for vulnerable infants and their families. It was a privilege to be with such a committed group of professionals who do a fantastic job often under challenging conditions.For more information about our campaign and on the signs of cerebral palsy see https://actioncp.org/awareness-campaign/

04/03/2024

Please see important call for evidence from anyone affected by preterm birth below:
The House of Lords Preterm Birth Committee has published its call for evidence. The Committee is inviting individuals and organisations to share their views on a series of topics related to its inquiry. We are keen to hear from health professionals, academics, charities and other organisations, and those with lived experience, and would be grateful if you would consider submitting a response.
The Committee is interested to hear about topics including:
Treatments and interventions that can assist in the prediction and prevention of preterm birth
Neonatal and longer-term care and support for babies born preterm
Existing clinical guidance relating to preterm birth, and how this is implemented
The ethnic and socioeconomic inequalities seen in relation to preterm birth, and how these could be reduced
Priority areas for research to prevent preterm birth and improve care for mothers and babies.
Further details can be found here: https://lnkd.in/eDDe4ENb.
The deadline for submissions is 5pm on Wednesday 27 March.
The Committee is currently also gathering evidence through a programme of public evidence sessions. These are all available to view online at https://lnkd.in/efh4MsKt.
You can follow the progress of the Committee’s inquiry via its website (https://lnkd.in/eWxVTRPy) or by following the Committee on X ().
Please bring this call for evidence to the attention of other groups and individuals in your network who may not have received a copy directly.
If you have any queries about the Committee’s work, contact us by email at [email protected].
Call for Evidence - Committees - UK Parliament
committees.parliament.uk

Consensus Standards for the use of medications in the management of childhood dystonia 19/02/2024

Your help is needed to improve the care of children with Dystonia!
A new project has been launched aiming to improve the care of children with dystonia by improving how medications are prescribed. Led by the British Paediatric Neurology Association, we are aiming over the next few months to develop guidelines on how medications can be used more safely and effectively. We are inviting everyone involved in the care of children with dystonia to suggest standards for how medications should be used. We want to hear the views of children, parents and carers, and as many different professional groups as possible to ensure that we reach the best set of standards (i.e. rules for how medications are used).
Please follow the link below to find out more about this project, and to suggest standards:
https://www.surveymonkey.com/r/VWH3GCH

Consensus Standards for the use of medications in the management of childhood dystonia Take this survey powered by surveymonkey.com. Create your own surveys for free.

13/02/2024

Kerry, the Founding Director of Discover Inclusion, is looking for children and young people to take part in a video expressing their views and experiences on education. The video will be featured as part of a conference called ‘Access to Academic Learning’ and help to give the educators attending an understanding about how young people are feeling about their school experience. If you and your child/ young person would be interested in taking part please contact Kerry for more information. Whatsapp: 07753 892 647 or email [email protected]

Call to party leaders: #LetsTalkCommunication | RCSLT 08/02/2024

Action Cerebral Palsy believes that ALL methods of communication, including AAC for those who require it, are key to a child's well being and attainment and we therefore support the RCSLT assertion that spoken language and communication is central to children and young people’s attainment and life chances.
The next government must ensure that the impact of the pandemic and the cost of living crisis on children and young people's education is addressed through supporting good spoken language and communication skills for all. We urge all three major UK parties to seize this opportunity, so all children and young people are able to achieve their potential, both in school and life.
That is why we are joining over 50 organisations in urging Rishi Sunak, Sir Keir Starmer, and Sir Ed Davey

Call to party leaders: #LetsTalkCommunication | RCSLT 8 February 2024The RCSLT is helping to lead the coalition, which is calling for spoken language and communication to be at the heart of parties’ 2024 election manifestos Ahead of the General Election, the Royal College of Speech and Language Therapists (RCSLT), Speech and La...

What is your experience with spoken communication difficulties? 19/01/2024

Smartbox is doing some research into the factors that might cause people to stop using their AAC device. They have created a survey and are looking for people to take part in some interviews with them. Smartbox is keen to hear from:
• People with complex communication needs
• Family and friends supporting people with complex communication needs
• Professionals who have worked with people who use AAC, including those who have started on their AAC journey but for some reason have not continued

This research project is a collaboration between Smartbox and SpeakUnique, with help from the Communication Matters AAC Advisory Group and supporters.

Take the survey: https://6dzrgg40sjq.typeform.com/to/w5Bq7C5y (typeform.com)

Read more: blog: bit.ly/Smartbox-research-project

What is your experience with spoken communication difficulties? This survey is part of a research project by Smartbox Assistive Technology and SpeakUnique. It is funded by UK Research and Innovation.

21/12/2023

Action Cerebral Palsy wish all our friends, colleagues and supporters a very happy Christmas and New Year. We thank you for your support and look forward to continuing our advocacy for all children and young people in the UK with with you in 2024!

28/11/2023

AAction Cerebral Palsy were delighted to meet AAndrew Jones MPin Westminster yesterday to discuss the needs of children and young people with and the changes required to promote early intervention, health, development and wellbeing.

10/11/2023

Have you seen any improvement in the Cost of Living Crisis? Are finances a cause for concern? Take part in Nathional Bobath Centre's anonymous survey for people with cerebral palsy and their families; you could make a difference.
https://ow.ly/NNXn50PZFBz Deadline now extended to 13th November

Have you seen any improvement in the Cost of Living Crisis? Are finances a cause for concern? Take part in our anonymous survey for people with cerebral palsy and their families; you could make a difference. Deadline 10th November
https://ow.ly/NNXn50PZFBz

02/11/2023

One week to go to the NHS England Parent Engagement Session for parents and carers of children aged up to 10 years old and with a primary diagnosis of cerebral palsy. NHS England would like to hear from you about your experiences of the NHS care and services your child has received. Please help to improve the health services for CYP with CP - Thursday, 9th November from 1 - 2 p.m. If you would like to join, please contact us at [email protected].

Chit & Chat - Transition Special | cpteensuk 26/10/2023

We are pleased to be able to join CP Teens UK on Wednesday, 8th November for a Transitions Special Chit & Chat session from 5 - 6 p.m. We want to hear about the issues you are experiencing and your concerns as you prepare to transition from a child to an adult with cerebral palsy in the NHS. For more about this session or to sign up to participate, please see:

Chit & Chat - Transition Special | cpteensuk Join us and Action Cerebral Palsy for this Chit & Chat special on Transition! Online informal, interactive session discussing your issues & concerns on transitioning from child to adult with Cerebral Palsy in the NHS. Action Cerebral Palsy & CP Teens UK are part of an NHS group looking to make impro...

24/10/2023

If you are a parent or carer of a child aged from birth to 10 years old with cerebral palsy, and would like to help improve health services for children and young people with with CP, please get in touch via [email protected]. There are a few remaining places for Action Cerebral Palsy NHS England engagement session on Thurs 9th Nov 1 pm – 2 pm.

Photos from CP Teens UK's post 17/10/2023

Congratulations to Ellie and CP Teens UK on their 10th anniversary today. Action Cerebral Palsy is going to be joining an upcoming CP Teens Chit & Chat session on 8th November for a transition to adulthood and adult services special!

16/10/2023

Action Cerebral Palsy has been invited by NHS England to help ensure that the work that they are doing now captures the voices of children and young people with cerebral palsy and their families and carers. NHS England is leading on the development of a framework that will help commissioners to improve services for children and young people with cerebral palsy. They are at an early stage in their framework development, and are working with organisations such as Action Cerebral Palsy, Scope and Whizz Kidz to engage with young people, parents and carers about their experiences of the NHS care and services that they have received.

In partnership with NHS England Action Cerebral Palsy will be hosting a virtual parent and carer engagement session on: Thursday, 9th November from 1 - 2 p.m. If you are a parent or carer of a child with cerebral who is aged from birth to 10 years, and would like to share your views of navigating NHS Cerebral Palsy services, please us email on: [email protected].

Our session will be run via Zoom on Thursday, 9th November at 1p.m. - 2 p.m. with up to 10 parents and carers.

Photos from Action Cerebral Palsy's post 10/10/2023

A Tuesday celebration and deep gratitude to the incredible Daphne Highfield and her family Indya Maidwell who chose to fundraise for Action Cerebral Palsy by sky-diving! They raised an incredible £740 for our charity. Daphne, long may your adventures continue. You are an inspiration! {I don't know if I mentioned, but Daphne is a very youthful 91 years old!}

Action Cerebral Palsy | World CP Day 2023 06/10/2023

Today, on , Action Cerebral Palsy has written to every MP, Peer and Local Authority calling on them to work with parents and carers to improve the service offering for children and young people living with cerebral palsy in their areas. To see these letters and learn more about what we are asking, click here - https://actioncp.org/world-cp-day-2023/. If you would like to get involved in this conversation, please contact us directly.

Action Cerebral Palsy | World CP Day 2023 On World CP Day 2023, Action Cerebral Palsy calls on MPs, Peers and Local Authorities asking them to improve workforce skills and knowledge of cerebral palsy, engage with parents, carers and young people living with cerebral palsy, and share information about the early warning signs.

Daddy and Ollie climb Snowdon , organized by Daniel Lane 05/10/2023

A huge thank you to Daniel and his seven year old son, Ollie, who climbed Snowdon - Yr Wyddfa - on 15th September and have already raised an incredible £760 for Action Cerebral Palsy. Thank you for choosing to share your story. With your help, we are working to improve workforce skills and understanding so that no more young children are missed out and instead can get access to the best possible intervention, care, education and support which meets their complex and changing needs. All the best to you and your family!

Daddy and Ollie climb Snowdon , organized by Daniel Lane A little bit about us: We are a family of 6. Daddy, Mummy, Ollie (7), Albie (6), Riley (2)… Daniel Lane needs your support for Daddy and Ollie climb Snowdon

04/10/2023

Toad Productions -the production company behind a new series of Channel 4 short films about disability and how non-disabled people can be better allies are looking for 18 - 35 year olds who might like to feature in these films.

Disability Action Plan 2023 to 2024 03/10/2023

Action Cerebral Palsy welcomed the opportunity to meet with the Department for Work and Pensions - DWP Minister for Disabled People, Health and Work Tom Pursglove MP and participate in a number of recent Disability Unit Roundtable discussions. Today we submitted our response to the Consultation and are calling for Government to collaborate much more closely with parents and carers of children and young people with cerebral palsy to improve workforce skills and understanding of this complex, lifelong neurological condition. Thank you to all the parents and carers who have helped us to shape this response. There is still time for you to have your say – the consultation closes this Friday, 6th October - .

Disability Action Plan 2023 to 2024 We are seeking views on the proposed Disability Action Plan and the new areas for action it includes. We want to hear from as many people as possible.

02/10/2023

Join us for the GREATEST dance afternoon at the GREATEST dance studio with the GREATEST “Artist in Residence” Leo Haines from the community.

Movement is medicine, and dance can be one of the most joyful and fun forms of movement. Yet, too often, dance can be inaccessible for people with CP.

To book you online place follow this link: https://upmovement.org.uk/exclusive-pineapple-dance-studios-event/



20/09/2023

With Kidz to Adultz Wales and West only 2 days away here is a run down of everything you need to know:

Event Showguide - Having the showguide in advance can help you plan and make the most of your day which you can view on our website: https://bit.ly/461AtvS

Parking - if booked in advance parking is heavily reduced to £6 per day. Book via the pre-paid link below:
https://iccwales.celtic-collection-events.com/parking/order/

Born to perform - will be back to deliver their popular dance workshops at Kidz to Adultz Wales & West. They will also be performing between 1 & 2 pm!

If you havent done so already, register for free online: bit.ly/3ZgBqy4

15/09/2023

We are so proud to be one of the Eton Action chosen charities this year. Please join us tomorrow at the fantastic Eton Action Fair! Come by and see us at stall number 3!! Thank you Eton Action.

Disability Action Plan 2023 to 2024 31/07/2023

Disability Action Plan https://gov.uk/government/consultations/disability-action-plan-2023-to-2024
Action Cerebral Palsy urges the CP community to use this chance to get our voices heard and improve the lives of people living with cerebral palsy by responding to this important consultation by Oct 6th.

Disability Action Plan 2023 to 2024 We are seeking views on the proposed Disability Action Plan and the new areas for action it includes. We want to hear from as many people as possible.

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