It has been a busy few weeks and I can now honestly say I am on the campaign trail...
Thanks to fantastic feedback from both this blog and my guest blog on the scope forum, I am now more convinced than ever that my experiences are not unique and that the UK is lagging behind other countries in both service provision, education of medics and research in this field.
Over the last few weeks I have been in touch with politicians, charities and centres here and abroad that are excited by the prospect of making changes for the better for adults with CP. Their enthusiasm, along with days spent pouring over my computer researching has helped to focus my thinking.
This is my proposal... have a read, if nothing else the figures are fascinating.
I would love to know your thoughts and more so any ideas or expertise you may have to help me take this forward.
Creating a medical hub for adults with
Cerebral Palsy
Adults with Cerebral Palsy (CP) are failed in the UK by
lack of dedicated and co-ordinated medical provision. The lack of recognition and
knowledge of the degenerative impact of CP results in adults not benefiting
from the timely monitoring, maintenance and intervention required to enable
them to fulfil their full life potential.
The key barriers for successful healthcare are
·
No obvious transition pathway from paediatric to
adult services
·
No best practice guidance on the treatment and
management of adults with CP
·
Lack of knowledge and understanding of long term
impact of living with CP
Our mission is to
1. Create
a centre of excellence in the UK for provision of medical services for adults
with CP
2. Improve
education within medical profession and beyond of CP in adults
3. Extend
knowledge base of CP in adults through research
4. Create
register of medical professionals with experience and expertise in treating
adults with CP
Insight
Adults with CP face unique challenges that often require
specialised care e.g. pain management, mobility problems, and aging-related
conditions such as osteoarthritis and osteoporosis. Yet, co-ordinated services
stop on transition to adulthood.
Often responsibility for coordinating care falls to the
GP. This model necessitates that GP’s have sufficient knowledge of CP to make
appropriate and timely referrals. The problem is further compounded by a lack
of research and sharing amongst professionals into how to manage and treat conditions
associated with ageing in persons with underlying neurological conditions. The
negative effects of ageing can also be accelerated by inadequate rehabilitation
following surgery or the constant use of support equipment.
The impact of these failings is unnecessary pain, reduced
quality of life and avoidable medical problems for sufferers and increased cost
and strain on already stretched health and social care services.
“Medical issues that are almost unsolvable when patients
come to us in their 40s could be averted if spotted earlier. While CP is not a
progressive condition, it does necessitate ongoing medical treatment into
adulthood to offset medical issues, such as early joint degeneration, that can
be extremely debilitating if left untreated.” Professor David Roye, Jr, MD, a leading paediatric orthopaedic surgeon
and the director of the Weinberg Family Cerebral Palsy Center
These issues are not unique to the UK. In the US for
example, the Weinberg Family Cerebral Palsy Center was set up in New York in
2013 to offer dedicated transitional care for cerebral palsy.
Too big a
population to ignore
·
111,000 people have CP in the UK (similar
population to MS and Parkinsons)
·
The current UK incidence rate is around 1 in 400
births (making it three times more common than Down syndrome and nearly 30
times more common than muscular dystrophy)
·
Approximately 1,800 children are diagnosed with
cerebral palsy every year
·
There are an estimated 30,000 children with
cerebral palsy in the UK
·
Research indicates that most will have a similar
life expectancy to non-disabled people
The cost of
cerebral palsy
·
Care Commissioning Groups, Local Authorities and
Trusts struggle to provide any information as to the number of children
diagnosed with CP, the service and care pathways available to them or the total
cost of cerebral palsy care (2016 study by Action Cerebral Palsy)
·
The lifetime costs for children born in 2016
with cerebral palsy is estimated to total £2bn. This is based on international benchmarks,
with 20% related to medical costs and 80% to indirect factors such as reduced
employment opportunities and premature mortality
·
Over 20% of CP sufferers will experience a
decline in mobility by the time they reach 40
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ReplyDeleteHi Emma, just saw your statement at EACD in Georgia. Excellent work. Thanks for sharing.
ReplyDeleteThank you. It is really lovely to get some feedback, it was such a shame that I couldn't be there in person. I would love to know more about your work.
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