About this event

  • Date and time Thu 7 Jul 2022 from 1:30pm to 5:20pm
  • Location Royal Society of Medicine
  • Organised by Medicine and Me, UP - The Adult Cerebral Palsy Movement

We would like to thank our anonymous donor for their generous support enabling this platform for patient focused charities and free access to the Medicine and Me series.

This event is an opportunity to understand cerebral palsy as a lifelong condition, including the consequences of aging and the associated co-morbidities. It will consider the challenges faced by the 130,000 community of adults with CP, the lack of coordinated care, and how this impacts them achieving full-life participation. It will also explore innovative solutions for a better future, using insights from professionals and patients living and working with the condition.

“You become 18 and then [all support] stops. But your Cerebral Palsy doesn’t disappear when you’re 18, but the services seem to stop.”
Barriers for adults with Cerebral Palsy on achieving full life participation: access to healthcare services and progressing at work, a report of the All-Party Parliamentary Group on Cerebral Palsy, March 2022

During this meeting you will:

  • Be informed of the latest research regarding adults with cerebral palsy and co-morbidities, ageing well with a disability, and the patient experience
  • Gain insight into specialist centre innovations in the UK and the international landscape
  • Learn the NICE guidelines and parliamentary recommendations around the APPG on cerebral palsy
  • Discuss what optimum health care and support could and should look like for this community

This is a unique chance to connect and engage with the adult cerebral palsy community. Delegates will have the opportunity to hear some personal and professional experiences of living and working with cerebral palsy, and understand how best to manage this condition. Topics include the consequences of aging and associated co-morbidities, innovative solutions, APPG report recommendations, and more.

 

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Show Virtual / In Person rates

Agenda

View the programme (In Person)

Registration, tea and coffee

Welcome and introduction

Samantha Simmonds, News Presenter

My life with cerebral palsy

Scarlett Murray, Writer

Understanding healthcare needs for adults with cerebral palsy

Dr Mark Peterson, Associate Professor, University of Michigan Medicine

Cognitive functiong and mental health in young people with cerebral palsy: The MyStory project

Professor Jan Willem Gorter, Head and Professor of Pediatric Rehabilitation Medicine, University Medical Centre Utrecht, Department of Rehabilitation, Physical Therapy Science and Sports, Wilhelmina Children's Hospital and Princess Maxima Center

Patient experiences
Presentation 1

Mrs Natalie South-Law, Disability Lead, Sported

Presentation 2

Dr Kirsty Colquhoun, Consultant Geriatrician, NHS Greater Glasgow and Clyde

I’m still here, 70 years on

Mrs Jean Martin, Retired Podiatrist

Panel discussion
Comfort break

Welcome back

Samantha Simmonds

Future innovations
The why’s and how’s of implementing a systematic follow-up of adults with cerebral palsy

Dr Elisabet Rodby Bousquet, Lund University, Uppsala University Sweden

Group intervention for cerebral palsy transition

Liz Keenan, Clinical Nurse Specialist, National Hospital for Neurology and Neurosurgery and Dr Dipesh Patel, Psychologist, Department of Neuropsychiatry and Department of Neuropsychology, University College London Hospital NHS Foundation Trust and National Hospital for Neurology and Neurosurgery

Future innovations – knowledge and understanding

Lily Collison, Programme Director, Gillette Children’s Press

Management of orthopaedic problems in adult patients with cerebral palsy

Mr Michail Kokkinakis, Consultant Paediatric Orthopaedic Surgeon, Evelina London Children’s Hospital

Panel discussion
Patient story

Carrie-Ann Lightley, Head of Marketing, AccessAble

Where do services for adults with cerebral palsy fit within the UK policy context?

Baroness Fraser of Craigmaddie, Chief Executive Officer, Cerebral Palsy Scotland

Building a movement for change

Emma Livingstone, Founder and Chief Executive Officer, Adult Cerebral Palsy Hub

Close of meeting

Drinks reception

View the programme (Virtual)

Welcome and introduction

Samantha Simmonds, News Presenter

My life with cerebral palsy

Scarlett Murray, Writer

What is cerebral palsy - health, sleep and physical activity

Dr Mark Peterson, Associate Professor, University of Michigan Medicine

Cognitive functiong and mental health in young people with cerebral palsy: The MyStory project

Professor Jan Willem Gorter, Head and Professor of Pediatric Rehabilitation Medicine, University Medical Centre Utrecht, Department of Rehabilitation, Physical Therapy Science and Sports, Wilhelmina Children's Hospital and Princess Maxima Center

Patient experiences
Presentation 1

Mrs Natalie South-Law, Disability Lead, Sported

Presentation 2

Dr Kirsty Colquhoun, Consultant Geriatrician, NHS Greater Glasgow and Clyde

I’m still here, 70 years on

Mrs Jean Martin, Retired Podiatrist

Panel discussion
Comfort break

Welcome back

Samantha Simmonds

Future innovations
The why’s and how’s of implementing a systematic follow-up of adults with cerebral palsy

Dr Elisabet Rodby Bousquet, Associate Professor, Lund University, Uppsala University Sweden

Group intervention for cerebral palsy transition

Liz Keenan, Clinical Nurse Specialist, National Hospital for Neurology and Neurosurgery and Dr Dipesh Patel, Psychologist, Department of Neuropsychiatry and Department of Neuropsychology, University College London Hospital NHS Foundation Trust and National Hospital for Neurology and Neurosurgery

Future innovations – knowledge and understanding

Lily Collison, Programme Director, Gillette Children’s Press

Management of orthopaedic problems in adult patients with cerebral palsy

Mr Michail Kokkinakis, Consultant Paediatric Orthopaedic Surgeon, Evelina London Children’s Hospital

Panel discussion
Patient story

Carrie-Ann Lightley, Head of Marketing, AccessAble

Where do services for adults with cerebral palsy fit within the UK policy context?

Baroness Fraser of Craigmaddie, Chief Executive Officer, Cerebral Palsy Scotland

Building a movement for change

Emma Livingstone, Founder and Chief Executive Officer, Adult Cerebral Palsy Hub

Close of meeting

Drinks reception

Location

Royal Society of Medicine, 1 Wimpole St, Marylebone, London, W1G 0AE, United Kingdom

Registration for this event will close on Wednesday 6 July 2022 at 01:00am. Late registrations will not be accepted. 

The agenda is subject to change at any time.  

All views expressed at this event are of the speakers themselves and not of the Royal Society of Medicine, nor the speaker's organisations. 

We are only able to share presentations that we have received permission to share. This is at the presenter and the RSM’s discretion. 

This event will be recorded and stored by the Royal Society of Medicine and may be distributed in future on various internet channels. 

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