Adult Cerebral Palsy Hub takes their campaign for Better Health Care for Adults with Cerebral Palsy to Westminster

Adult Cerebral Palsy Hub trustees Emma Livingstone and Miriam Creeger secured the support of Shadow Disabilities Minister Marsha De Cordoba when they met her at the Houses of Parliament last week.

One of the driving forces behind Adult Cerebral Palsy Hub is our work towards securing improved medical care for Adults with Cerebral Palsy. We believe that to provide optimum care for adults with Cerebral Palsy, change is required to reconfigure health care services to meet the requirements as laid out in the guidelines published by The National Institute of Clinical Excellence (NICE) in January of this year.

We recognise that to make change within the structures of the NHS is not a simple task. Over the past few months we have worked hard to galvanise the medical community into action. However, it has become very clear that in order to achieve clear integrated care pathways dedicated to adults with Cerebral Palsy, pressure needs to come from outside the healthcare system as well.

We need to raise the profile of the needs of adults with Cerebral Palsy in Parliament and ask for support with the development of a National Framework of care.

Last week thanks to the tenacity of ex Para-Olympian and Adult Cerebral Palsy Hub Ambassador Leon Taylor, Emma and Miriam together with Leon and his wife met with The Shadow Disabilities Minister, Marsha De Cordoba to make this case.

The meeting went very well and the Minister, seemed generally surprised at the numbers of people affected by Cerebral Palsy in this country and recognised the disparity in profile of cerebral palsy in comparison with other condition such as Multiple Sclerosis, Parkinson’s Disease and Autism.

Marsha De Cordoba was incredibly engaged with the issues and took pains to understand what the changes have been in the understanding of Cerebral Palsy and why this necessitates better and different health care for adults. She recognised that the issues for adults with Cerebral Palsy are multi-faceted and understood why we needed to raise the profile of Cerebral Palsy as a lifelong condition amongst her parliamentary colleagues.

To help us with this in the first instance, she offered us the opportunity to host a reception at Parliament to coincide with World CP Day; which takes place this year on Sunday 6th October, in order to raise the profile of the issues we addressed. She also agreed to helping us with introductions to members of the Health and Social Care Committee and to address this directly to government ministers through posing oral and written questions in Parliament. We also discussed that unlike many other conditions, there is not currently an All Parliamentary Group for Cerebral Palsy and she offered to guide us in establishing one.

We left the meeting feeling very positive and that the Shadow Minister for Disabilities, had clearly heard and understood the issues and challenges faced by adults like Leon and Emma. We are grateful for her support in building the political dialogue we require for the development of a National Framework of Care, and we will be working hard to take some of her suggestions forward, starting with organising an event in parliament to celebrate World CP day in October.

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

Complainer to Campaigner - better services for adults with CP

I am a 40 year old mother of 3 and until last year was working as a Speech and Language Therapist. I have become increasingly frustrated at the services available for adults with CP and I believe my exprience is not unique.

It is very difficult to know where to begin as some one who now spends a great deal of time at home, following major hip surgery. However I began talking through my thoughts with some close friends and my husband, Derek and far from thinking that my ideas were pie in the sky they were both supportive and enthusiastic, and so I find myself transformed from Complainer to Campaigner.

A lack of adult services for Cerebral Palsy

In my experience, first as a child with cerebral palsy and today as a professional working with children with cerebral palsy (CP), services for children with CP are well established and co-ordinated, even if they may not be perfect. Unfortunately, this has not been my experience as an adult with CP.

Unlike most neurological conditions, there is no one lead consultant with specialist knowledge of cerebral palsy who takes the lead with patients. Transition pathways to adult services are poor and the access to services limited. Responsibility for coordinating care falls to the GP.

There are issues with your GP becoming the gatekeeper to access to services. It is dependent on the GP having sufficient knowledge and understanding of cerebral palsy to make appropriate and timely referrals and to manage pain. It also means that there is no immediate access to services during an acute episode. For example, access to physiotherapy to help control acute episodes of spasm is impossible because of the long NHS wait times and no opportunity for immediate care.

As a result of this system, care becomes reactive rather than proactive. Diagnosis and treatment is often delayed and leaves no room for preventative or long term maintenance programmes. Statistics for the number of adults who have cerebral palsy are hard to come by, but with an estimated 30,000 children in the UK having CP, it’s easy to conclude that a great many people are currently struggling within this system.

A difficult transition for adults with cerebral palsy

After the transition to adult services, care becomes siloed specialty care, and the providers don’t always have knowledge about cerebral palsy. For example, many of the orthopaedic surgeons I have met have treated me like just another orthopaedic case. They have been unable to consider the effects of my underlying neurology when diagnosing and suggesting treatment, and they neglect to consider the impact of the treatment. Some seem to feel unable to offer advice and put everything down to the fact that I have CP.

As a result of the lack of a lead consultant for my cerebral palsy and the difficulties accessing knowledge and services, I feel I have spent much of my adult life:

• Trying to get people to acknowledge that things are getting more difficult for me (and that I am neither anaemic or depressed)
• Not knowing where to go when I need help (and having to be the person to suggest treatment options to my GP)
• Not being able to access services when I need them, nor finding specialist consultants in whom I feel confident and who understand the functional impact of my difficulties.

The main issues for adults with CP

• Lack of clear transition pathways
• Lack of understanding of the longer term impact of living with CP
• No individual practitioners who hold a specialised knowledge of Adults with CP
• No co-ordinated services to allow access to immediate treatment at key times
• Difficulty accessing specialist knowledge

A possible solution to the lack of adult cerebral palsy services?

These issues are likely not unique to the UK, but in some places there have been positive moves to address this. 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. It provides integrated, coordinated, and multidisciplinary health care that includes paediatric, transitional, and adult care. It was funded by the Weinberg family to address their son’s needs as he transitioned into adult services.

The Weinberg Family Cerebral Palsy Center describes their service as providing “transitional & lifetime care” – integrated care and best treatment options by a network of adult care specialists knowledgeable about CP. I would like to see a centre like this in the UK as one possible solution and I plan to raise awareness, galvanise support, and fundraise in order to make it happen.

To do this I first need to find out about other peoples experiences? Am I unique?
What is your experience as an adult with CP?
What works, what has not worked, how would you like services to be different?

Please let me know in the comments below.

And if you feel as passionately as I do about the need for dedicated adult services, and you are able to help in anyway, please contact me directly. Follow my progress on my blog – and on Facebook (page to follow).