THE UK’S 130,000 ADULTS WITH CEREBRAL PALSY ARE INVISIBLE TO THE NHS
We are always working for our community’s voice to be heard that CP is #lifelong. With the advent of the new Goverment, this is a very important moment for us to move this message up the political agenda. We’re joining with several major CP charities and groups to put forward the Cerebral Palsy Charter which we are aiming to get the new Government to commit to.
Click to download the Cerebral Palsy Charter
Click to download the All-Party Parliamentary Group (APPG) on Cerebral Palsy Report
Below is a summary:
RECOGNISING CEREBRAL PALSY AS A LIFELONG CONDITION AND THEREFORE …
1. Enabling access to the framework used by GPs to identify individuals with long term conditions, and offering annual medical reviews.
2. Implementing systematic reviews leading to specialist neuro rehabilitation pathways for health interventions and for accessing and staying in work.
3. Funding dedicated key professionals to advocate, coordinate and support individuals with CP to live and age well.
4. Investing in recruitment and training to increase specialist knowledge of Cerebral Palsy across health and social care.
EXECUTIVE SUMMARY
1 Studies show that many individuals with a childhood onset disability (COD) such as cerebral palsy may experience near-normal life expectancies; however, healthcare coordination, clinical interventions, and research efforts remain largely focused on children with these conditions.
2 For many individuals living with cerebral palsy, adult life comes with challenges in housing, employment, relationships, family life, and overall participation1. The ability to participate in society without restrictions and a sense of belonging is rated as an important aspect of “meanings of citizenship”2. This requires access to person-centered rehabilitation, social services and in many cases access to personal assistance3.
3 Current services for people of all ages with cerebral palsy in the UK fall short of the NICE guidelines. Coordinated care and services for children and young people are stretched or inadequate, and these stop on transition to adulthood. Indeed, the UK’s 130,000 adults with cerebral palsy are invisible to the NHS.
4 In March 2022, a report from the All-Party Parliamentary Group (APPG) on Cerebral Palsy, co-sponsored by this charity, set out the minimum requirements for proper coordinated healthcare for adults with cerebral palsy.
It called for NHS England, social care, education, and employment specialists to agree a national service specification for adult cerebral palsy to be used to commission dedicated specialist services based on the needs of local populations within the 42 new Integrated Care Board (ICB) areas.
None of the report’s recommendations have been implemented, leaving care for anyone with cerebral palsy falling off a cliff when they turn 18.
5 A health economics study commissioned by this charity calculated the cost of the package needed to provide proper healthcare support for adults with cerebral palsy would be approximately £20m per annum, equivalent to 42p per day for each of the UK’s 130,000 adults with cerebral palsy.
6 We are calling on the Government to recognise cerebral palsy as a lifelong condition. We are also asking the Government to pledge to ensure all adults with cerebral palsy will get enhanced health and social care support, including an annual medical review.
Join the Campaign
Join us in this campaign to move CP up the political agenda. You can play your part in the campaign in one or more of the following ways:
- Write to your MP. You can download this model letter/email, which you can then change to make it more personal to you.
- Sign up in the box below to add your name in support of the CP Charter
- Share this page in your social media accounts
- Sign up to the newsletter in the box at the foot of this page, to be kept up to date
Adults with Cerebral Palsy have some fundamental needs
THE NEED TO TREAT CEREBRAL PALSY AS A LIFELONG CONDITION
Diagnosed at two with Cerebral Palsy, Emma Livingstone was discharged from medical services at 16, being told that she was the best she would ever be. But her physical problems increased in adulthood, without any integrated care from the authorities. Emma had seen a significant decline in her mobility in her late 30’s which had led to several surgeries and her having to give up her work as a Speech and Language Therapist.
Cerebral Palsy is not treated as a lifelong condition, but as a childhood condition. As a result, after reaching the age of 18, specialised treatment largely ceases and care becomes reactive rather than proactive. Diagnosis and treatment is often delayed and leaves no room for preventative or long term maintenance programmes.
Emma couldn’t understand why support for adults with Cerebral Palsy was so threadbare, and uncoordinated. That frustration expressed itself in a blog post titled “From Complainer to Campaigner” where she started to reach out to the medical and CP communities, and began setting an agenda for changing this. This led to starting UP – The Adult Cerebral Palsy Movement, to help those in the adult CP community who like her, were struggling to get the right kind of help.
THE NEED FOR SUPPORT TO WORK
Clive Gilbert is a leading policy expert on assistive technology for disabled people, drawing in part, on his own experiences living with Cerebral Palsy.
He says: “I’ve got Cerebral Palsy which affects my whole body. I can’t walk, I have limited fine motor control. I can do some basic tasks with my hands, such as pressing buttons, but not much beyond that. I have speech impairment too.
It defines my path in life and my job. So I work in assistive technology and disability and I require a lot of support from various people. I live with my parents and the house has been adapted, and carers come at certain points. And I work with a couple of personal assistants who assist me with my job. And I use a variety of technology.
There’s no pathway of support once you reach adulthood, so you feel that you’re on your own quite often in managing your disability, and trying to understand how that might change in the future. There’s no one to go to consult on how to of manage your disability, so that results in a lot of uncertainty.”
THE NEED FOR A SPECIALIST MULTIDISCIPLINARY TEAM
Carrie-Ann Lightley has managed to put together her own multidisciplinary team.
She says: “From the age of 16, the only contact I had with the medical world was via my GP. I didn’t have any other specialist support at all. And then, when I got to my early thirties and started struggling a bit more and started doing my own research, then I took it upon myself try and get some support from people like neuro physio, occupational therapy, to get some consults with a neurologist and then to see the musculoskeletal team.
I sit here a few years later having achieved all of that, having managed to pull together my own multidisciplinary team. But I don’t think I can emphasise enough how much work that has taken, how much tenacity, how much not listening when I was told, ‘no, no, you can’t be referred to this service, they can’t help you’. And how I’ve had to make myself fit into boxes that ultimately aren’t cerebral palsy. It shouldn’t be that way, shouldn’t take that much. It shouldn’t be down to us as individuals to have to fight for the services that we need to support us.”
THE NEED FOR ACCESS TO MENTAL HEALTH SERVICES
Georgia Hamer is 29, and is a passionate advocate for greater understanding of Cerebral Palsy.
She says: “I have spastic athetoid quad cerebral palsy, which is two types of Cerebral Palsy in one. I use an electric wheelchair for nearly all my movement, and I use hoists and stuff to get around when I’m not in my chair. I live with my parents and I have a care team for when they’re not around because I require someone 24 hours a day.
I have a fair few down days and diagnosis of mental health issues that come alongside the CP, and are also a direct cause of the CP. I have a diagnosis of PTSD (Post Traumatic Stress Disorder) because of all the procedures and operations I have had to have. There’s a definite correlation between my CP and my mental health – whenever my CP is worse, my mental health is worse and then because my mental health is worse, my CP is worse – every time I get anxious or angry or emotional, the pain goes up in my body and it makes life not the easiest to handle.”