ARE ADULTS WITH CEREBRAL PALSY SECOND CLASS CITIZENS?

Ahead Of Cerebral Palsy Awareness Month, starting 1 March 2021

ARE ADULTS WITH CEREBRAL PALSY SECOND CLASS CITIZENS?

  • 130,000 UK adults living with Cerebral Palsy are treated like ‘Second Class Citizens’ due to inequality in healthcare provision
  • Mock ‘Second Class Stamps’ launched featuring comedian Rosie Jones, comedian Francesca Martinez, actor James Moore, Britain’s Got Talent winner ‘Lost Voice Guy’ Lee Ridley, Paralympian David Smith MBE and para-Dressage rider Tegan Vincent-Cooke unveiled – designed by illustrator Eve Lacey
  • Created to raise awareness of gap in healthcare provision for adults with Cerebral Palsy (CP) – which means they are treated like Second Class Citizens – and ask for the inequality to be stamped out
  • Campaign demands government action – which could contribute £422mn to the economy
  • Stamps serve as world’s smallest petition with a simple demand: CARE PARITY FOR CP

Ahead of Cerebral Palsy Awareness month (1 March): A charity has unveiled a set of mock ‘Second Class Stamps’ featuring six personalities from the worlds of comedy, acting and sport: comedian Rosie Jones, comedian Francesca Martinez, actor James Moore, Britain’s Got Talent winner ‘Lost Voice Guy’ Lee Ridley, Paralympian David Smith MBE and para-Dressage rider Tegan Vincent-Cooke – all of whom have Cerebral Palsy (CP).

The ‘stamps’ have been launched to raise awareness of how adults with CP are treated like ‘Second Class Citizens’ when it comes to healthcare.  Charity Adult CP Hub is asking the Government to ‘stamp out’ this inequality and insisting the NICE (National Institute for Health & Care Excellence) guidelines are adopted, to improve life for the 130,000 adults in the UK living with CP. Or, in short they want, Care Parity for CP. The charity calculates the gross economic employment benefit of stamping out the gap in healthcare provision is £422mn.

NICE guidelines already exist for England, Wales and, effectively, Northern Ireland but the government has yet to adopt them across the NHS. In Scotland, no SIGN guidelines (equivalent to the NICE guidelines) even exist for adults with CP – an even further inequality in care parity.

Emma Livingstone from Adult Cerebral Palsy Hub, the charity behind the campaign, which inputted to the NICE quality standards for adults with CP, explains: “Adults with CP are treated like second class citizens when it comes to healthcare. We do not get joined-up healthcare like other adults with life-long conditions and there are no clear care pathways. At the age of 18, we are basically just told to ‘get on with it’. NICE guidelines have been developed recommending this is changed to provide joined-up healthcare with dedicated CP specialists, which is what happens for other long-term conditions. However, the guidelines have yet to be adopted across the NHS. Our campaign aims to ‘stamp out’ this gap.”

Conservative life peer Baroness Stephanie Fraser of Craigmaddie, who is also Chief Executive of charity CP Scotland, which also inputted to and supported the development of the NICE guidelines, is supporting the campaign. She adds: “The answers to closing this gap already exist. There is absolutely no reason not to adopt the NICE guidelines and there is also no reason not to adapt those to SIGN guidelines for Scotland and adopt them.”

The mock stamps, featuring illustrations of six leading personalities from the world of comedy, sport and acting, were designed by Eve Lacey, 28 from Essex who is a professional Orthoptist and keen illustrator. She has first-hand experience of the difficulty of moving from joined-up paediatric CP care to the ‘cliff edge’ where support simply ends for adults. The stamps have been designed to both raise awareness and act as ‘the world’s smallest petition’, with the reverse featuring Adult CP Hub’s simple request, Care Parity for CP. Small touches, such as the use of purple to denote the value of the ‘purple pound’ and green to represent CP give further powerful messages.

Emma adds: “We’re asking for something incredibly simple: Care Parity for CP. It can literally be written on the back of a stamp, it’s the world’s smallest petition. In simple terms it means: specialist services for adults with CP, adoption of the NICE guidelines and quality standards universally across all the NHS services. This change will deliver a huge impact for adults living with CP and for the NHS and the economy. We believe an investment of £20mn into joined up healthcare for adults with CP could give £422mn back to the economy in gross employment benefits. At a time when the healthcare system and economy is under unprecedented pressure, this actually offers a way to save money.”

The public is being asked to visit https://you.38degrees.org.uk/petitions/care-parity-for-adults-with-cerebral-palsy and sign the charity’s petition.

By World Cerebral Palsy Day on 6th October, the charity hopes to have 100,000 signatures so the issue can be discussed in Parliament. Subject to lockdown restrictions, it will also deliver its ‘petition on a postage stamp’ to Downing Street.

Comedian Rosie Jones says:  “I’m shocked and concerned at the gap in healthcare for people CP versus other life-long conditions. It is discrimination versus other conditions, and we must change this.”

Comedian Francesca Martinez adds: “Adopting these guidelines will greatly benefit not only wobbly adults but also wider society. I hope everyone will get behind this campaign and see that this one simple change will make a huge difference.”

Actor James Moore says: “Whether or not you have or know someone with CP, please sign this petition. It makes sense for the NHS and the economy and it will help the 130,000 adults with CP.”

Britain’s Got Talent winner, comedian Lee Ridley aka ‘Lost Voice Guy’ adds: “Please: stamp out the gap. Sign this petition and help adults with CP get care parity.”

Paralympian David Smith MBE says: “Providing joined-up healthcare means a chance for people to live healthier, happier lives, with less strain on the NHS and more opportunity to stay in employment. It doesn’t make sense to not adopt the NICE guidelines.”

Para-Dressage athlete Tegan Vincent-Cooke adds: “I’m a busy, active person and want to be able to stay fit and healthy throughout my life. It’s much harder to do that without ongoing expert care that understands all the support you need and makes sure it’s joined up. The gap in care now I’m 19 versus when I was 17 is shocking.”

The campaign can also be supported by following @adultcphub and using #StampOutTheGap

 

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About Adult CP and its campaign

About Emma Livingstone & Adult Cerebral Palsy Hub

Emma, a mother of three living with Cerebral Palsy, had the idea to set up the charity in 2016 when she was recovering from hip surgery. Emma had seen a significant decline in her mobility in her late 30’s, which led to several surgeries and her having to give up work. In 2018, she and Miriam Creeger, her physiotherapist, founded the charity to campaign for better support and services, and to give a voice to the adult Cerebral Palsy community.

Adult CP Hub was established by Emma Livingstone and Miriam Creeger to create a ‘home’ for adults with Cerebral Palsy and put their needs at the forefront of the minds of the medical and research community.  Miriam is a physiotherapist and friend of Emma.  Having both the personal experience of healthcare and the practitioner’s view has provided a powerful point of view for the charity.

About Baroness Stephanie Fraser of Craigmaddie, Chief Executive of charity CP Scotland

Stephanie Fraser joined Cerebral Palsy Scotland as Chief Executive in January 2012. Stephanie is Chair of the Scottish Government’s National Advisory Group for Neurological Conditions and a member of the Executive Committee of the Neurological Alliance of Scotland.  She is also a Board Member of Creative Scotland and the Scottish Charity Regulator (OSCR).

About Rosie Jones

‘RoJo’ is a comedian, writer and actor, who has appeared on 8 out of 10 Cats, 8 out of 10 Cats does Countdown, The Last Leg and Comedy Central’s Roast Battle, as well as Serena in a Silent Witness two part-special. She wrote for the second series of Sex Education and has two sitcoms in development.

About Eve Lacey

Eve Lacey, 28 from Essex illustrated the stamps. She is an Orthoptist by profession but started illustrating when she was four years old, inspired by her father, a technical illustrator. She enjoys hand-drawn illustration and acrylic painting but was inspired to try new techniques of digital painting for this project. Eve describes her personal experience as “As a child my care was co-ordinated, it was smooth sailing. When I turned 18 it was like I didn’t exist anymore in terms of healthcare. Nobody knew what to do with me. It has taken me ten years to try to get a definitive answer on chronic pain. There is no cohesion, no multi-disciplinary team to access professionals who know about CP. It’s not like CP gives you a reduced life expectancy, so it’s incredible adults are just left by the wayside.”

About Francesca Martinez

Francesca Martinez is an award-winning “wobbly” comedian, actress, writer and campaigner.

In 2000, she became the first female comic to win the prestigious Daily Telegraph Open Mic Award at the Edinburgh Festival. Since then she has toured the world and appeared on TV shows such as Live at the Apollo, The Jonathan Ross Show and Extras. Her first book What The **** Is Normal?! was published in 2014 to critical acclaim and was nominated for two national book awards. She has supported Frankie Boyle on his UK tour, and is currently working on several TV and theatre commissions. Her new play, All of Us, was due to debut at the National Theatre in 2021 but has been postponed due to the pandemic. An active campaigner, she regularly speaks out on many of the most pressing issues of our times.

About James Moore

James Moore is an actor, who played Ryan Stocks in Emmerdale and has appeared in productions for the National Youth Theatre and The Playhouse and in Channel 4’s Random Acts. He won an NTA Best Newcomer Award in 2019 for the role, as well as a Daily Star Soap Newcomer Award. He is also a drummer, rapper, spoken word artist and filmmaker.

About Lee Ridley (Lost Voice Guy)

Lee Ridley was a journalist before embarking on a career in comedy in 2012 and winning the BBC New Comedy Award in 2014. He was the first Comedian to win Britain’s Got Talent and he has since appeared on The Royal Variety Performance, Live At The Apollo, The Last Leg and America’s Got Talent: The Champions. His BBC Radio 4 sitcom, Ability, which he co-wrote and in which he also stars, is currently back on air for a third series and his debut book, I’m Only In It For The Parking, will be released in paperback in March. In 2019, Lee was named Ents24’s Hardest Working Comedian, and in 2019 and 2020 he was named in The Shaw Trust Power 100 List of the UK’s most influential disabled people.

About David Smith MBE

David Smith MBE is a Paralympian and the joint most successful British Boccia player in history. He was part of the British Boccia team that won gold in 2008, in 2012 won a bronze in the team event and silver in the individual event, in front of a record Boccia crowd and in 2016 won individual gold.

About Tegan Vincent-Cooke

Tegan is a Para-dressage rider, has won seven national titles and is currently riding for British Dressage at a silver level. She wasn’t a sporty child, until she took up riding after going to a local stables. Inspired by 2012 Sophie Christiansen’s triple-gold medal winning performance at London 2012, she took up dressage and is now on a mission to help more people of all backgrounds, shapes and sizes into the sport and to be the first black woman to represent Great Britain in an equestrian team at a Paralympic Games. Currently also a student at the University of Bath, Tegan has 300,000 followers on Tik Tok, who appreciate her entertaining and self-deprecating approach to documenting her life.

About NICE & SIGN

NICE is the National Institute for Health and Care Excellence. NICE guidelines set out the care and services suitable for most people with a specific condition or need, and people in particular circumstances or settings, helping health and social care professionals prevent ill health, promote and protect good health, improve the quality of care and services, adapt and provide health and social care services.

NICE guidelines for adults with cerebral palsy were issued in 2019 but have yet to be adopted across the NHS. Adult CP Hub is insisting they are adopted, to #StampOutTheGap in healthcare provision for adults with CP vs other lifelong conditions. Adopting the guidelines would ensure a clear care pathway with joined-up healthcare, with a specialist co-ordinating care across other services. At the moment, at the age of 18 adults with CP say their care ‘falls off a cliff’.

NICE guidelines apply to England, Wales and, effectively, Northern Ireland. In Scotland, there is an equivalent called SIGN guidelines. SIGN is the Scottish Intercollegiate Guidelines Network. Its objective is to improve the quality of health care for patients in Scotland by reducing variation in practice and outcome, through the development and dissemination of national clinical guidelines containing recommendations for effective practice based on current evidence.

There are currently no SIGN guidelines for adults with cerebral palsy – a further inequality. Adult CP Hub is also insisting that the NICE guidelines can and should be adapted as SIGN guidelines and adopted in Scotland.