A busy few weeks...

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