Cerebral Palsy – What’s preventing early intervention?
Jackie Linehan, Legal Director at Enable Law, and Ian Sansbury, Chief Executive of Pace, the charity for children with disabilities, have recently collaborated on a paper for the All-Party Parliamentary Group on Cerebral Palsy. The Group is sponsored by the charity Action CP and is making recordings of the sessions available on the APPG YouTube channel. The full paper is reproduced below.
Addressing barriers and incentives to early intervention for babies and toddlers with cerebral palsy and associated neurodisabilities
A joint submission to the All Party Parliamentary Group on Cerebral Palsy – by Enable Law and The Pace Centre
Despite the variability in the causes of cerebral palsy and associated neurodisabilities, those conditions have been widely demonstrated to be highly responsive to early intervention, when plasticity in the child’s developing brain is at its greatest. The role of this joint submission is not to add to the wealth of evidence from many expert providers and practitioners on the critical importance of early intervention for such children but to reflect on some of the barriers and potential incentives to delivery of such provision.
Public Sector Barriers
Despite a wealth of research evidence in its favour, intensive early intervention for children with cerebral palsy still remains the exception rather than the norm across the UK. Providers, whether NHS community therapy teams or voluntary sector providers, are too often under-resourced and struggle to deliver intervention with appropriate levels of scale and intensity. Provision is also geographically variant across the UK, with high quality provision typically focused on a relatively small number of centres of excellence – typically university hospitals or specialist charities. As a result, not only are beneficial outcomes for children and families are being lost but opportunities to make savings for the public purse, in the form of lower future education, health and social care costs for those individuals, are also being squandered.
While the case for early intervention has been widely made through academic research, we believe that three key public sector barriers currently prevent the proper, scalable and widespread development and commissioning of early intervention practice for babies and toddlers with neurodisabilities:
- Models of best practice provision have not been articulated with sufficient clarity to allow providers to coalesce around, and replicate, what works. That lack of standardisation makes it difficult for commissioners to back appropriate provision with any level of confidence that it represents good value for money.
- Research evidence has typically been expressed in overwhelmingly clinical terms, rather than in language with which local authority and health commissioners can engage. In particular, there is a need to quantify the economic costs and benefits that early intervention provides.
- Early intervention, like most forms of prevention commissioning, requires an investment-mindset in which the initial ‘investor-commissioner’ recognises and accepts that the future benefits (in terms of lower future health, education and social care costs) will accrue to other budget-holders. Innovative commissioning models, which incentivise long-term, investment-based approaches to prevention are required if early intervention is to scale appropriately.
Other Barriers to Access
Practitioner Awareness and Early Diagnosis: The route to appropriate provision within the UK health and social care system is to secure a diagnosis. Whilst parents often have a sense that their child is not developing normally, it can too often take many months (or even years) to secure a diagnosis. The risks of a ‘wait and see’ approach among non-specialist health professionals, such as GPs, community paediatricians, health visitors and social workers, are well rehearsed and can, and should, be remedied through better training and awareness.
- Parental Awareness and Training: In addition to practitioner awareness, parents lack the resources that will help them to spot the signs of early developmental challenges. They also need to understand, with real clarity, what appropriate provision for their child should look like, particularly immediately following diagnosis. Pace hears from far too many families who complain of a lack of proper explanation of their child’s condition by professionals, inadequate signposting (typically only to overstretched statutory services with no suggestion of voluntary sector alternatives) and inconsistent early therapy input. There remains a lack of clarity for parents, navigating an incredibly complex system, of what ‘good’ looks like. It is therefore, typically, the most resilient families who seek out appropriate provision, while the most vulnerable tend to accept the less intensive intervention that is too often offered as the default.
- Cost: The mixed economy that exists in provision for children with cerebral palsy, across NHS, voluntary sector and private sector delivery, means that not all provision is available free at point of delivery. Those who have the financial resources (either through their personal circumstances or through a clinical negligence settlement) are typically more able to access more intensive private or charitably subsidised voluntary sector provision. Those who are less well resourced will again typically have to accept less intensive statutory provision, creating significant inequities.
- Ease of Access and Parental Exhaustion: Parents with children with additional needs find that they need to navigate multiple services, with many different access points, often having to fight at each point of entry to secure what their child needs. They are typically exhausted by those processes and their wellbeing and mental health is often impacted negatively by the experience. Again, it is typically the more resilient parents who have the energy to seek out appropriate provision for their child.
Better integration is an obvious answer. Pace, for instance, delivers a highly integrated approach, with families able to access all elements of therapeutic delivery (occupational therapy, physiotherapy, speech and language therapy and conductive education) in one place – with the therapists working very closely together to cater for the child’s (and the family’s) holistic needs. Support for family members (particularly parents and primary carers) are at the heart of Pace’s delivery – given the critical role they play in their child’s development and learning.
Barriers Created by the Legal Framework
For those with a potential legal claim, seeking legal advice is usually a route of last resort. Parents are usually coping with their child’s needs on their own and worry about what will happen if they are no longer around to provide care, not wishing to leave that burden upon a sibling or to trust their child to relatively limited state provision. They fight hard for every input that their child needs. It is often their inability to secure a piece of equipment, correct nursery provision or their concern about the future that leads them to seek legal advice and to enter the litigation framework.
A 2018 Report by NHS-Resolution, ‘Behavioural insights into patient motivation to make a claim for clinical negligence’, identified the following personal or ‘intrinsic’ motivations to bring a claim:
- Wanting to prevent similar things happening to others.
- Wanting to receive an apology or an explanation for the incident, or to trigger a detailed investigation of the incident.
- Wanting the clinicians involved to be held to account.
- Cognitive biases: sunk costs, loss aversion, optimism bias.
- Emotional responses (e.g. frustration and anger) brought about by poor incident or complaint handling.
- Financial compensation.
Finance appears to be the driver only in limited circumstances. However, it can often become the goal because our default statutory provision for children with cerebral palsy is relatively limited. There is good reason to believe that better overall provision for all children with cerebral palsy may lead to lower claim incidence and even lower overall costs for the NHS. This potential is worthy of detailed research and quantification.
Better access to early intervention, properly funded by NHS or by insurers as appropriate, would also help to improve outcomes for children and reduce the amount of any settlement (as the long-term impact of any injury would be reduced). The challenge, however, is that the legal machine takes years to work through. Unless there is an early acceptance of liability by the injuring party (be that the treating hospital, or the insurers of an employer or driver), there will be a fight through the litigation process to achieve some liability agreement. This will ordinarily take several years and take a family beyond the ideal early intervention window before any compensation is available.
This issue has been addressed head on by parts of the legal community where commercial insurers are involved. In claims involving personal injury the Rehabilitation Code provides an approved framework for injury claims that enables claimant representatives and compensators to work together. Its aim is to promote the use of rehabilitation and early intervention in the compensation process so that the injured person makes the best and quickest possible medical, social and psychological recovery. This is the case regardless of a liability admission and recognises that money spent early is likely to save legal costs and damages payments in the long run.
These legal framework barriers to early and intensive intervention can potentially be mitigated by earlier identification and acceptance that a problem has occurred and by identifying alternative routes to remedy:
Early recognition of a potential problem by NHS:
- The Healthcare Safety Investigation Branch may provide a potential and at least partial solution. Their maternity investigation programme is part of a national plan to make maternity safer and they undertake early investigations into defined categories of birth to learn from mistakes. They aim to start investigation within 4 weeks of an incident and are reliant upon hospitals to report qualifying incidents to them. These early investigations are co-ordinated with family input. Not only does this highlight to the family that there may have been an adverse outcome but also there may be an early admission of liability. This might allow funding to be made available earlier for those families where our legal system provides compensation.
- Duty of candour: Every healthcare professional must be open and honest with patients when something that goes wrong with their treatment or care causes, or has the potential to cause, harm or distress. They must apologise to the patient (or, where appropriate, the patient’s advocate, carer or family). The receipt of a Duty of Candour letter should, at that early stage, highlight to a family the potential need for more input or investigation and potentially early intervention.
An alternative route to remedy:
The NHS-Resolution study shows that discontent with explanation and complaints handling are a key driver leading to claims. A change of emphasis to apology, explanation, prevention and early treatment to limit the impact of loss would all be in the gift of the NHS and could significantly lessen the cost of clinical negligence claims both in terms of legal cost and compensation needed. It would also result in better outcomes for children, who would benefit substantially from early and intensive intervention.
This opportunity, however, takes us back to the barriers outlined above. For dysfunction in the system to be removed, an investment mindset is needed, in which the initial ‘investor-commissioner’ recognises and accepts that the future benefits (in terms of lower future legal, health, education and social care costs) will accrue to other budget-holders. This has been accepted by the insurance industry as evidenced in the Rehabilitation Code. A similar approach by NHS-Resolution in those cases involving birth brain injury could result in a significant improvement in outcomes for children affected by negligent management at birth. Furthermore, a universal approach which, in common with the Rehabilitation Code, does not require an admission of liability, could see a wider improvement in outcomes for all children impacted by early brain injury.
Innovative commissioning models, which incentivise long-term, investment-based approaches to prevention, investigation and communication after an incident and pro-active rehabilitation are required if early intervention is to scale appropriately.