News

Weekly news round up week commencing 4th February 2019

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 28th January 2019

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 21st January 2019

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 14th January 2019

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 7th January 2019

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 31st December 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 17th December 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 10th December 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

In the news

New research on the effects of magnesium sulphate in premature women is helping to reduce the cases of cerebral palsy in babies, it has been shown. The programme, which has been shaped by the experiences of pregnant women, aims to empower mothers by offering the sulphate, which can reduce rates of the disorder by 30 per cent. 

Weekly news round up week commencing 3rd December 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 26th November 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 19th November 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 5th November 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Amanda and Caroline return from their tour of Australia

A chance to reflect...

"With regard to early intervention, it was clear that in Australia,there is a strong commitment to high quality, family-centred holistic early childhood support for children with developmental challenges"

Find out more on our blog

 

Tuesday 6th November 2018

Weekly news round up week commencing 15th October 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 8th October 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up week commencing 1st October 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

World Cerebral Palsy Day 2018

Action Cerebral Palsy is celebrating World Cerebral Palsy Day Today. Cerebral palsy is the most common childhood disability in young people, and Action CP is working to ensure that improving cerebral palsy provision remains a Government priority. This summer, Action CP met with Bambos Charalambous MP and Marie Rimmer MP, and highlighted the need for a cerebral palsy register and improved teacher training. 

Follow Amanda and Caroline's tour of Australia on their blog

Action Cerebral Palsy Chief Executive, Amanda Richardson, and Director of Communication and Policy, Caroline O’Shea have regularly updated their blog whilst in Australia, on a tour to examine cerebral palsy best practice, sponsored by the Winston Churchill Memorial Trust.

Highlights include:

  • Meeting with Dr Sarah McIntyre at the world-renowned Cerebral Palsy Alliance Research Institute

  • Investigating early intervention with Professor Nadia Badawi, at the Grace Centre for Newborn Care

  • Visiting an early detection clinic and speaking to another Winston Churchill Memorial Trustee, Dr Prue Golland, at the Marconi Centre

Read more about their Australia tour on their dedicated blog.

 

Wednesday 4th October 2018

Latest published cerebral palsy research - 24th September

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Weekly news round up week commencing 24th September 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Follow Amanda & Caroline's blog of their Australian tour here

Action Cerebral Palsy Chief Executive, Amanda Richardson, and Director of Communication and Policy, Caroline O’Shea have launched a blog to highlight, record and share all the insightful research and groundbreaking from their Australian tour, sponsored by the Winston Churchill Memorial Trust.

Amanda and Caroline will be documenting their travels, updating the blog with photos and snippets from their meetings with clinicians, policy experts and politicians. Visit their blog here  to learn more about their travels.

 

Friday 28th September 2018

Action Cerebral Palsy visits Australia to investigate pioneering intervention model and the Australian CP register

Action Cerebral Palsy Chief Executive, Amanda Richardson, and Director of Communication and Policy, Caroline O’Shea, will travel to Australia, the world leader in cerebral palsy research, next week as part of their Winston Churchill Memorial Fellowship 2018 award.

They will explore Australia’s pioneering intervention models for children with Cerebral Palsy, gaining a greater understanding of the impact the country’s cerebral palsy register has had on improving education and health provision for young people.

The research trip will see the pair meet with leading clinicians from the world-renowned Cerebral Palsy Alliance Research Institute, as well as parents and government officials. They will examine how best practice in clinical techniques, technology and policy have improved outcomes for children with CP in Australia. Amanda and Caroline will also use their time to investigate Australia’s CP register, and will assess how easily one could be set up in the UK.

Amanda and Caroline were awarded the Winston Churchill Memorial Fellowship in March this year to undertake the trip and understand how Australia had become the global leader on cerebral palsy research. Action Cerebral Palsy will compile a report on the learnings and is set to present to MPs and health and education policy makers in the UK in January, at a landmark Parliamentary event.

The award, which the Fellowship gives to “inspiring individuals who possess the passion and commitment to make a real difference”, comes following the launch of the charity’s ‘Identify Intervene Impact’ campaign, which aims to improve the early identification of cerebral palsy, to secure timely health and educational intervention to treat and manage it, and to ultimately better the outcomes of all children with the condition.

Monday 24th September 2018

Latest published cerebral palsy research - 24th September

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Weekly news round up 17th September 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up 10th September 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 10th September

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Weekly news round up 17th August 2018

Weekly news round up 03rd September 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up 27th August 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 27 August 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Weekly news round up 20th August 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 14 August 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Weekly news round up 17th August 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up 3rd August 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up 10th August 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 1 August 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Weekly news round up - 27th July 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 23rd July 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Weekly news round up 20th July 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 17 July 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Latest published cerebral palsy research - 11 July 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Weekly news round up 13th July 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Council for Disabled Children: June 2018 newsletter

The Council for Disabled Children's June newsletter, including details of the CDC's new Information, Advice and Support Programme, and its annual Stakeholder Survey, can now be accessed here.

Weekly news round up - 2nd July 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

SEN magazine: How can the NICE guidelines help in treatment of cerebral palsy?

Action Cerebral Palsy's Chief Executive Amanda Richardson MBE discusses the role the recent NICE guidelines can play in early diagnosis and intervention of cerebral palsy, in an in-depth article for SEN magazine.

The article can be accessed below:

Weekly news round up - 29th June 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 22th June 2018

Weekly news round up 22nd June 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 15th June 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 14 June 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Action Cerebral Palsy produces guide for MPs

Action Cerebral Palsy has launched a new resource to help MPs across the country guide their constituents on what to do if they think their child has cerebral palsy, as part of its campaign to improve early identification and treatment of the condition to secure better outcomes for children across the country.

 

The guide, intended for use by MPs and their Parliamentary Caseworkers, explains the signs that indicate that a child may have cerebral palsy, three key milestones in a child’s development that parents should watch out for, and who parents should be advised to turn to if their child has or is suspected of having cerebral palsy. 

 

The charity's 'Identify, Intervene, Impact' campaign aims to improve the early identification of cerebral palsy, to secure timely health and educational intervention to treat and manage it, and to ultimately better the outcomes of all children with the condition. It calls for better training on early identification for education and healthcare workers in contact with children at risk of cerebral palsy, a national register of the number of children affected by it and the health and care provision available to support them, and an introduction of best practice guidance for education and health professionals to implement integrated health and educational pathways and specialist educational support for children with CP.

Weekly news round up - 8th June 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 7 June 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Weekly news round up - 01st June 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 25th May 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 24 May 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's latest free weekly bulletin, which can be accessed here.

Weekly news round up - 18th May 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 17 May 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's lates free weekly bulletin, which can be accessed here.

Weekly news round up - 11th May 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 10 May 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's lates free weekly bulletin, which can be accessed here.

Weekly news round up - 3rd May 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 30 April 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's lates free weekly bulletin, which can be accessed here.

Weekly news round up - 27 April 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 20 April 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 18 April 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's lates free weekly bulletin, which can be accessed here.

Weekly news round up - 13 April 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 10 April 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's lates free weekly bulletin, which can be accessed here.

Weekly news round up - 6 April 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 29th March 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 23rd March 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 16th March 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Latest published cerebral palsy research - 13th March 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's lates free weekly bulletin, which can be accessed here.

Weekly news round up - 9th March 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Action Cerebral Palsy awarded Winston Churchill Memorial Fellowship

 

9 March 2018. The Chief Executive of Action Cerebral Palsy has been awarded a Winston Churchill Memorial Fellowship for 2018.

 

The Fellowship, awarded by the Winston Churchill Memorial Trust, is one of only 150 to be granted each year to UK citizens. The programme allows them to travel overseas to explore international best practice in the issues facing Britain today, and to bring back global insights to improve communities and professions across the UK.

 

Action Cerebral Palsy Chief Executive Amanda Richardson will travel to Australia, which currently leads the way globally on cerebral palsy research, to investigate its national cerebral palsy register and best practice intervention models for children with the condition, in an effort to influence practice in the UK. The charity hopes to be able to collect the supporting evidence needed by UK government departments to make the case for much-needed investment in early intervention for children with the condition.

 

This follows the launch of the charity’s ‘Identify Intervene Impact’ campaign in late 2017, which aims to improve the early identification of cerebral palsy, to secure timely health and educational intervention to treat and manage it, and to ultimately better the outcomes of all children with the condition. It calls for better training on early identification for education and healthcare workers in contact with children at risk of cerebral palsy, a national register of the number of children affected by it and the health and care provision available to support them, and an introduction of best practice guidance for education and health professionals to implement integrated health and educational pathways and specialist educational support for children with CP.

 

 

Amanda Richardson, MBE, Chief Executive of Action Cerebral Palsy said:

 

“There are approximately 30,000 children in the UK with cerebral palsy and yet we lack a cohesive model for support for these children and their families. Key to enabling their full potential is the early identification of the condition and subsequent intervention, but cerebral palsy practitioners in the UK face barriers to implementing early intervention because of a lack of evidence of its clinical, educational and cost benefits.

 

We hope that this project will highlight evidence from Australia to the UK government to argue for this investment. We will be working closely with the Cerebral Palsy Alliance to explore the Australian Cerebral Palsy Register (ACPR), the most comprehensive register of information on children with cerebral palsy. This register identifies the proportion of children with cerebral palsy born prematurely and those who developed the condition before or after birth, highlighting the need for these cohorts to be monitored for cerebral palsy and to receive early intervention if needed. We will also discuss current evidence-based early intervention and best practice in the country; how this is monitored; and whether this is carried out regionally or nationally.

 

We are thrilled to have been awarded this opportunity and hope that, by describing a proven model as implemented in Australia, the Department of Health will support a change in policy and practice which will enable all children who may be at risk of cerebral palsy to be identified as early as possible, and to receive the life changing interventions they require.”

 

Julia Weston, Chief Executive of the Winston Churchill Memorial Trust, said:

 

“Churchill Fellows search the world for ways to improve their communities and professions. We have great confidence that Amanda will use the insights she gains from her time in Australia to make a positive difference to children with cerebral palsy in the UK.”

Latest published cerebral palsy research - 8th March 2018

 

Interested in the latest published research into cerebral palsy? Then make sure you read the Cerebral Palsy Alliance's lates free weekly bulletin, which can be accessed here.

Weekly news round up - 2nd March 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 23rd February 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 16th February 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 9th February 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 2nd February 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Have your say in Paediatric Orthopaedic Lower Limb surgery - a survey.

Have your say in where paediatric orthopaedic lower limb surgery research should be directed! 


A survey is under way as part of a consultation led by the British Society for Children’s Orthopaedic Surgery (BSCOS), the British Orthopaedic Association (BOA) and the Oxford University Biomedical Research Unit, bringing together organisations, individuals with childhood lower limb problems, carers and clinicians to identify research priorities in this field.

 
To all individuals, parents and/or professionals involved or affected by childhood lower limb problems: we encourage you to take part in the survey and to circulate the link amongst your networks to ensure that every group within the community is heard. The survey takes just 5 minutes to complete and is open to anyone with a personal or professional connection to pediatric lower limb surgery.
 
This is an independent and transparent James Lind Alliance initiative, well-respected by the National Institute for Health Research (NIHR) and other research funders as it is an inclusive consultation giving the whole community the opportunity to develop a list of Top 10 research priorities. The aim is to increase government funding for paediatric lower limb surgery research and the process has a track record of success, incentivising researchers to respond to patient and health care professionals priorities and bringing greater cohesion amongst organisations. 

The survey can be accessed through the website.

For more information, watch this short animation here

Weekly news round up - 26th January 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 19th January 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 12th January 2018

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

Weekly news round up - 5th January 2018

Click here to access our weekly round up of health and education news, summarising the most important stories of the week. With Parliament still on its Christmas recess, the NHS has been dominating the headlines this week!

Early identification and intervention crucial to cerebral palsy treatment

Weekly news round up - 8th December 2017

Action Cerebral Palsy has launched a new resource to help parents easily identify if their child under two might be at risk of cerebral palsy, as part of a wider campaign to improve early identification and treatment of the condition to secure better outcomes for children across the country.

 

The resource, which explains three key milestones in their child’s development that parents should watch out for, and which is available for download online, is part of Action Cerebral Palsy’s ‘Identify, Intervene, Impact’ campaign which was launched in a parliamentary event in London on Tuesday.

 

The campaign aims to improve the early identification of cerebral palsy, to secure timely health and educational intervention to treat and manage it, and to ultimately better the outcomes of all children with the condition. It will call for better training on early identification for education and healthcare workers in contact with children at risk of cerebral palsy, a national register of the number of children affected by it and the health and care provision available to support them, and an introduction of best practice guidance for education and health professionals to implement integrated health and educational pathways and specialist educational support for children with CP.

 

Amanda Richardson, MBE, Chief Executive of Action Cerebral Palsy said:

 

“Our vision is that every child and young person in the UK with cerebral palsy can access, from birth, the best possible intervention, care, education and support to meet their complex and

changing needs. We have been working hard to achieve this for years but now it’s time to make our campaign public and to get everyone affected involved. Early identification of cerebral palsy is the first, and in many ways most crucial, step towards making an impact on the life of a child with the condition, and we urge all parents to make use of this guidance to monitor their child’s development. Talk to your GP or health visitor about it and seek a referral to a child development service for further assessment if you’re concerned.”

 

“We will be producing many more similar resources throughout the campaign to guide not only parents, but also education and healthcare professionals, on how they can help achieve our vision for children with cerebral palsy. In the meantime, we urge the Government to take action on our recommendations as to how the variable provision of cerebral palsy across the country can be improved.”

 

Caroline O’Shea, Director of Policy and Communications for Action Cerebral Palsy said:

 

“Early identification followed by early intervention is essential to ensure the best outcomes for children with cerebral palsy, as their brains are at their most malleable during their first 2-3 years of life and so can benefit most from intervention. Specific therapies including physiotherapy, speech and language therapy and occupational therapy have been shown to contribute to infants’ physical, cognitive, social and emotional development. Early identification very much depends on the knowledge and experience of early years’ practitioners, but parents play a very important role too, which is why we’ve produced this resource to help guide them.

 

“Better information and signposting won’t achieve our vision, however, if early years’ practitioners and clinicians aren’t also on board, and it is therefore fundamental that they undergo training and continued professional development to ensure they’re aware of the latest in the world of cerebral palsy. We will be using this campaign to raise awareness of and support for this crucial issue to help us enable the potential of every child with cerebral palsy.”

 

Central to the campaign will be the development of materials to raise awareness of how the condition can be better managed, and will include a comprehensive guide for parents, developed in collaboration with parents, on what to expect when their child is diagnosed with cerebral palsy, including information on quality of care and how to raise concerns if these standards aren’t met.

Weekly news round up - 8th December 2017

Action Cerebral Palsy keeps up to date with the latest political, parliamentary and industry developments affecting the cerebral palsy community - you can find a summary of this week's developments here:

ACP Welcomes publication of cerebral palsy quality standard

NICE Guidelines - Cerebral Palsy in children and young people now published

Action Cerebral Palsy has welcomed the publication of a new quality standard on cerebral palsy by the National Institute for Health and Care Excellence (NICE), which aims to set out the high standards expected to improve the diagnosis, assessment and management of cerebral palsy in children and young people.

 

The guidance makes a number of recommendations, including that children not sitting by eight months, using one hand more than the other before 12 months, or not walking by 18 months, should be referred to specialist services for assessment.

 

The quality standard also said that children with significant risk factors – such as babies born before 18 weeks or with a low birth weight, should be given additional follow-up to help spot the signs of cerebral palsy earlier.

 

Action Cerebral Palsy was quoted in support of the statement in the Birmingham Mail, saying “"It's essential this leads to improved follow-up for children with major risk factors for cerebral palsy; prompt referral for children with delayed motor milestones; better information for parents and carers of children and young people with cerebral palsy; and personal folders tracking the development of these children.

 

"This will enable parents and health practitioners to intervene at the earliest stage, with the confidence that they are receiving the best care for their child."

 

More information on the quality standard can be found on the NICE website.

NICE Guidelines: Cerebral Palsy in children and young people has been published.

Listen to ACP supporter Bert Martin talking about his own experience on BBC Three Counties Radio

Listen to ACP supporter Bert Martin talking about his own experience of cerebral palsy on the Health Show with Nana Akua on BBC Three Counties Radio.

Bert was born at 28 weeks and diagnosed with cerebral palsy at 10 months, and has benefited from early intervention which has allowed him to develop his motor skills as well as his academic skills. Bert also talks about the Identify, Intervene, Impact campaign which we’ll be launching in the autumn.

 

You can listen to Bert from 9 minutes in.

Action Cerebral Palsy’s Chief Executive recognised for her contribution to Cerebral Palsy in the Queen’s birthday honours list 2017 with an MBE

Commenting on this announcement, Amanda said:  

“I feel so honoured to have been nominated and awarded an MBE for services to children with special educational needs.   This recognition belongs to all the dedicated people I work with and to the vision we share.   I intend to use this honour to redouble Action Cerebral Palsy’s efforts to improve outcomes for children and young people with cerebral palsies and their families through the promotion of best practice and policy reform.”

 

Amanda has over thirty years' experience of working with children with special educational needs in both mainstream and special school settings.  She is passionate about improving outcomes for children and young people with cerebral palsy and providing support for their families.  In 1995, Amanda joined Pace, a charity and specialist centre based in Aylesbury for children with motor disorders such as cerebral palsy and their families, initially working directly with the children as a teacher.  In 2002, she became Head Teacher of Pace and Chief Executive in 2012.  In 2013, Pace joined forces with nine other charities to form a consortium called Action Cerebral Palsy which is now an independent national charity focused on the legislative, clinical and family needs of children with cerebral palsy.

 

Amanda played a key role in the Parliamentary Inquiry on Cerebral Palsy resulting in January 2015 in the report "Enabling Potential - Achieving a New Deal for Children with Cerebral Palsy".  

Sign up today for the Action CP / Brainwave Spring Conference on April 10th: Early Intervention - The First 1001 Days

Action CP / Brainwave Spring Conference - Early Intervention - The First 1001 Days

NICE Guidelines - Cerebral Palsy in under 25s: Assessment and Management

Action Cerebral Palsy were delighted to be stakeholders in the recently published NICE guidelines on Cerebral Palsy - Cerebral Palsy in under 25: Assessment and Management. 

Action Cerebral Palsy launched its latest report Variations in Care: an analysis of cerebral palsy provision’ at the Houses of Parliament

On Wednesday 13th  July Action Cerebral Palsy launched its latest report ‘Variations in Care: an analysis of cerebral palsy provision’ at the Houses of Parliament.

 

The report outlines the findings of Action Cerebral Palsy’s 2016 Freedom of Information (FOI) study into the provision of cerebral palsy services (identification and ongoing treatment) across England carried out between February and May, 2016. It systematically questioned the levels of cerebral palsy care provided by every Clinical Commissioning Group, Local Authority and NHS Trust in an effort to enhance our understanding of the disparities in available care.

 

Action Cerebral Palsy’s investigations revealed four clear trends:

 

1. The majority of CCGs, LAs and Trusts struggled to provide any information as to the number of children diagnosed with cerebral palsy, the service and care pathways available to them or the total cost of cerebral palsy care.

 

2. Extremely limited information was received on the level of cerebral palsy training available to health professionals. For example, of those Local Authorities that responded to Freedom of Information requests, just 6% were able to provide details of the ‘training and advice provided to health visitors on identifying and referring children suspected of having cerebral palsy, outside of that provided as part of undergraduate training.’ This raises the question as to the quality of service received by children with cerebral palsy and their families, and whether referral routes are being used efficiently.

 

3. Little information was available as to the specialist providers from whom children with cerebral palsy could receive care. Where information was received, clear disparities in provision became clear. It was notable that the service available even in some major conurbations, for example Leeds, was extremely poor, as were several rural areas such as Cornwall.

 

4. Integration of services remains low across the country with disparate bodies operating across geographies and few identifiable mechanisms for exchange between them.

 

These trends illustrate the fractured nature of cerebral palsy care in England and highlight that many children will not receive the quality of care they require. For example, one of the most significant features of cerebral palsy is the impact that early diagnosis and intervention, particularly in the first 24 months, can have on later-life outcomes.

 

However, without nationally agreed protocols for identification, assessment, diagnosis and analysis, some children will be forced to wait longer for treatment than others. Given the disproportionate allocation of specialists and specialist training across England, this situation will be exacerbated and requires stronger intervention.

 

Commenting on the report, Action Cerebral Palsy Chief Executive, Amanda Richardson, said: “This report highlights the diversity of levels of care received by children with cerebral palsy and their families across England. While there are some areas, such as County Durham and Bristol, where care standards and access to services is extremely high, we are concerned that some children, particularly those in rural areas, may not be receiving the care they require.”

 

“The report demonstrates the challenges of provision faced by many children with cerebral palsy and their families, and the need for minimum nationwide standards to ensure that all children with cerebral palsy can reach their potential.

 

“We are extremely grateful to Jamie Reed and his staff for the support they have given in the drafting of this report and in helping to organise our most recent Parliamentary event.”

 

“We hope that the report will be a starting point in raising standards of care for children with cerebral palsy across England and that it will provide an opportunity to encourage the sharing of best practice so as to ensure that every child can access the services that they need.”

EU Referendum Results

It was announced this morning that the referendum on the UK’s membership of the EU has seen ‘Leave’ secure a win by a narrow margin. 51.9% of the population voted for Britain to leave the EU, with 48.1% voting to remain.


In an official statement, the Prime Minister announced that he will resign by the Conservative Party conference, which will take place on 2nd – 5th October. The formal process of withdrawing from the EU will then begin under a new leader. David Cameron’s confirmation that the Cabinet will meet on Monday suggests that there will not be a reshuffle for the time being.


The new Prime Minister will need to establish a stable Government as soon as possible in order to calm financial markets, and begin in earnest the UK’s EU exit negotiations. It is also likely that there will be an Emergency Budget in the coming months to announce measures to manage the UK’s departure from the EU. The timing of the UK’s EU exit will now hinge on a decision as to when to invoke Article 50 of the of the Treaty of the European Union, which triggers a departure process which may last up to two years.


Although there will be an attempt to continue the legislative agenda as outlined in the recent Queen’s Speech, it is likely that both the direct and indirect repercussions of the vote to depart the EU will dominate the political landscape.


As health, education and social care are largely outside of the realm of the EU’s competence, the direct impact of this decision on Action Cerebral Palsy will be minimal. There is speculation that the wider economic consequences of this result could result in the Government enacting further spending cuts – including in the health, education and social care sectors. There are also questions now to be resolved over the migration status of the many thousands of EU workers in the NHS, and how the Government will recruit further workers in future. There have been suggestions from the ‘Leave’ campaign this morning that further investment promised for the NHS may not materialise – which when accompanied by potential spending cuts from an Emergency Budget, could worsen pressure on the health sector. This is undoubtedly speculation at present, with more certainties likely to emerge over the coming days.

NHS England Chief Executive calls for additional funding for social care

The Chief Executive of NHS England has said there is a “strong argument” to direct any additional public funding for health to social care rather than the NHS. In a speech to the NHS Confederation, Simon Stevens clarified that while additional funding from the Government is unlikely to be offered, he believes that “The social care funding piece is unfinished business. It is obvious that there is going to be a widening gap between need and funding.” He indicated that this opinion was built on a growing national awareness of the difficulties faced by social care that he and his colleagues are now looking to rectify.

Mr Stevens also suggested that the Government is going to intervene to “re-set” the money available for the NHS in July, which will entail setting final control totals for trusts and providers to adhere to – without any additional funding being provided. He further argued that the extra £8 billion requested of the Government in the Five Year Forward View was dependent on “continuing access to social care, relative to need”, as well as support for public health and capital spending.

Local authorities welcome the transfer of child public health commissioning from national government

Local authority directors of public health and children's services have welcomed the transfer of commissioning responsibilities for child public health services from national government.

 

Debbie Barnes, director of children's services at Lincolnshire County Council, called the changes a "huge opportunity" and said that these will enable more services to be commissioned around local authority population boundaries. She said that commissioning changes will lead to the development of closer links between services like children's centres and health visiting, as well as school nursing services. She said that the current system of having a health visitor working with 0-5s and schools nurses working with 5-16s was a model that required more cohesion.

 

Dr Bruce Laurence, director of public health for Bath and North East Somerset, said that any changes will not be made "just for the hell of it". He added that councils working with their local CCGs will now control "pretty much all of the child health world".

 

Dominic Harrison, director of public health at Blackburn and Darwen, said that local authorities should not insist on numbers of professionals, but should instead insist on the achievement of "x, y and z outcomes". Dr Virginia Pearson, director of public health at Devon County Council said that the recommissioning of services should focus on "creative solutions".

Children’s Minister Ed Timpson addresses Council for Disabled Children annual conference

Children's Minister Ed Timpson has addressed the Council for Disabled Children's annual conference, which centred upon addressing questions relating to the future of SEND reform.

 

In his address, Timpson re-stated his three reasons for the SEND reforms which were introduced last year. He noted, firstly, that families were having to fight too hard for resources within a system which does not work for them; secondly, that children with SEN do not do as well in early years education as they should do; and thirdly, that the system as it previously stood did not encourage education, health and social care agencies to work together for the benefit of children and families.

 

He was keen to emphasise that it had been "emboldening" to see so many people who have worked hard in support of the Government’s reforms, but stated that they were still very much a work in progress. Timpson said: “We know that these reforms will take a while to embed but with continued support – and challenge – from the parents, children and young people at the heart of them, I’m confident we will continue to see changes which empower, support and enable children and young people reach their full potential.”

 

Specific issues he raised as being in need of further work were the quality of local offers; areas relating to accountability; and the plans to implement joint Ofsted and Care Quality Commission local area inspections. Timpson also noted the priority his department was placing on children's mental health, and highlighted the commencement this month of a joint pilot with NHS England to train single points of contact across 27 Child and Adolescent Mental Health Services (CAMHS) areas and in more than 250 schools.

 

He concluded by stating that he was prepared to "keep listening, make adjustments where necessary, but above all, continue to put the case for why the vision set out almost five years ago has to be made a reality".

                                                                   For enquiries, please contact amanda.richardson@actioncp.org   07721 372499

Registered Address:  Units 1 and 2, Field View, Baynards Green, Bicester, Oxon, OX27 7SG 

Registered Charity: number 1165217