The heart-warming story of US-born Matthew Walzer is a fantastic example of how those live with Cerebral Palsy can live an independent life.
Matthew wrote an open letter to the CEO of Nike, Mark Parker, explaining that a lack of flexibility in his hand muscles led to difficulty in tying his shoe laces. Common symptoms of CP in babies and children include difficulty swallowing, lack of co-ordination, slow speech, a curved spine, and a lack of muscle control.
Matthew suggested that Nike create a brand new trainer that can benefit those with CP and similar disabilities. Amazingly, over a three-year period, Nike created a series of shoes with a revolutionary strap system. Matthew chose not only to accept the challenges of his condition, but to face them too, and find a way to make life easier for himself and others with similar disabilities.
In the UK, an estimated 30,000 children live with CP, and approximately 1 ,800 are diagnosed every year. Of those diagnosed, 20% are due to negligence, whilst the remaining 80% are due to congenital factors or difficulties during pregnancy.
Rosamund Rhodes-Kemp, Head of Clinical Negligence and Personal Injury at Hudgell Solicitors in London, specialises in CP cases including children. She has represented families in many high-profile CP cases and spoke of her experiences in the field:
Q. What made you interested in pursuing complex claimant cases, in particular cerebral palsy?
Rosamund: I nursed children in my previous career and had applied for, and been accepted on, a midwifery course at the John Radcliffe Hospital, when I opted for law instead. I have also been a special needs governor at a primary school for 15 years.As a nurse, you are used to dealing with a multidisciplinary team, and that is exactly what you do with cerebral palsy or other maximum severity cases. If you have a great legal and health professional team, it is often possible to secure an admission of responsibility and then apply for an interim payment, so that the injured person receives compensation before the final settlement and can start to rebuild their lives. Frankly, there is little that is as satisfying in the work that we do.
Q. Do you feel that your experience as a former nurse has given you an insight into these types of medical cases?
Rosamunnd: Undoubtedly. Not least is the knowledge and understanding of medical records and, in cerebral palsy cases particularly, the midwifery and nursing records. It is obviously vital to understand what has been the cause, but equally important to understand what has been missed out and the significance of both. But also understanding complex medical terminology, anatomy, and physiology, and the interaction of drugs. Most importantly though, is how mistakes can happen in any given situation. Picturing yourself in the scene at the time and then working backwards to see what could have been done differently, or what would have avoided the mistake.
These cases are also incredibly stressful and you carry a huge emotional burden for the family throughout the lifetime of the case, and nursing prepares you for that, because you carry the burden of the patient’s anxieties, illness, and recovery when you are looking after them, because they are at their lowest ebb.
Q. What was the most remarkable case related to CP that you have worked on and why?
Rosamund: I am still actually working on my most memorable case! it is memorable for lots of reasons. Firstly, because when it first came into the department I was working in at the time, a colleague of mine put it in the discarded cases pile. I got it out and had a look and thought there was something in it. A few months later, having obtained the records and an expert report, we received full admissions of responsibility from the Trust. It is also memorable because of the complex family dynamics – these have made it particularly challenging and tested every possible area of knowledge, expertise, and diplomacy.
Q. What needs to change regarding prevention and support?
Rosamund: The most common reason for negligently caused cerebral palsy is the misinterpretation of CTG traces, and so priority should be given to regular and high quality teaching on the interpretation of CTGs. Also poor staffing levels and lack of consultant cover.
Moves have been taken to ensure there is 24-hour consultant cover in obstetric units and proper staffing levels, but there is a shortage of midwives and a shortage of funds, and it is going to be difficult to change because training, consultant cover, and staff shortages are all going to necessitate additional funds being made available at a time when NHS resources are stretched to the limit.
However, what I would say is that prevention is far better than trying to deal with the problem when it occurs. The cost of looking after a child with profound cerebral palsy is enormous to society, to the family, and to the NHS. So it is surely better to invest more funds in preventing these tragedies occurring in the first place.
With greater technology and advances in medicine, it is getting easier to detect problems during pregnancy, so that steps can be taken to minimise the risks of labour. But you will still need competent staff and enough of them or risks will still materialise. It also makes economic sense to invest heavily in these children when they are tiny, because they do far better if they are surrounded by a multidisciplinary team, providing support and therapy for all of their needs. So, for example, a team for a profoundly affected child would include:
- Speech and Language therapy
- Occupational therapy
- Community Nurse
- Social Services regarding adaptations to housing
The top of the wish list would have to be that every child with cerebral palsy would get some compensation, rather than the lottery, which means that some children, who have been affected by negligence, will get a substantial award, whereas other children get nothing.