Why Advocacy Matters: Navigating the UK Healthcare System When Your Child Has Complex Needs
Most parents of a disabled child do not make the conscious decision to become a case manager. It somehow comes to pass, in the space of the third missed referral in an EHCP review, and it tends to be the families that fare best that learn to think of each appointment, letter, diagnosis as part of one great document, one extended argument to make the pieces slot together
Parents who have to become coordinators whether they want to or not
Nobody puts a job description in front of you saying that you must be the coordinator and manager of your child’s needs, but it is a job nonetheless, one that takes hours. Physio referrals and speech and language therapy waiting lists take time, as does pulling the relevant bits from last year’s occupational therapy notes for this year’s EHCP review. Then there is the benefits form to fill in, based on the recommendation last year from the same OT who thinks you might qualify for a specialist bed for your child. This is all before Monday morning. Each of these items will land on a different desk with different responsibilities, perhaps in different organisations with little or no shared oversight.
This is not because they are inept or uncaring; most will be working to capacity with limited administrative help, with a region’s budget to balance, and this is the reality they have to work within.
It falls to you or nobody to keep an overview of your child’s needs, to know what is due to whom and what you might need to ask for in turn.
A fractured system that requires a single point of contact
The responsibility for a child with complex needs cuts across maternity, neonatal and paediatric trusts, Integrated Care Boards and local authorities, schools and social services, each with their own remit, budgets and paperwork. A therapy commissioned by one NHS Trust may be refused by another, a social care assessment may be stalled because it is not clear whether it is a health or education responsibility, or an education need. The family is the only one that can see across this paperwork and become the central point of information for everyone else. An advocate who can see the joins and gaps can get the necessary information on to the table for others, or cut the time spent on these administrative logjams considerably.
Medical evidence is what tips the scales in these considerations
When it comes to getting a service, decision makers tend to be persuaded by actual medical evidence, as distinct from arguments in general.
The difference between a refused referral and one that has been successful will frequently come down to a letter, one stating that the child “would benefit from further support” and another that goes into detail on the child’s presenting problems, their impact on function, the strategies currently in use and the outcomes on ceasing that support. The same applies to the SEND Tribunal, where consultant reports are the deciding factor on an EHCP appeal, and frequently the only evidence the Local Authority will accept. Courts and tribunals are aware of the challenges faced by families and the pressure they are under, but the evidence on the table, namely consultant reports, tips the scales when it comes to funding decisions. This makes the production of the correct reports, and their timing, crucial.
When a difficult birth is part of the story
Most causes of cerebral palsy occur prior to birth, but some are associated with birth trauma and hypoxic ischaemic encephalopathy, where oxygen deprivation around the time of birth can lead to brain damage and neurological conditions. If you have had a difficult birth, had concerns at the time, or feel that your child was in any way compromised around the time of their birth, there may be evidence here.
The evidence needed is likely to be on file already, as maternity records are extensive and detailed, covering every aspect of labour and delivery. By virtue of a birth, you have a right to these records under data protection legislation, free of charge, and it is advisable to obtain a copy of them in full as soon as possible, even if only for your own peace of mind. You will also find that a complete set of notes helps considerably in discussions with NHS organisations, whether it is a review of your child’s needs or a referral. The records are in place and can be referenced, rather than asking people to provide information based on somebody’s recollection of an event long in the past.
The two tests in a clinical negligence claim and why medical evidence helps
If it is decided to pursue a claim for clinical negligence, two issues need to be established by evidence, and medical evidence helps substantiate both of them.
The first issue is usually breach of duty, which means proving that the standard of care provided was lower than that of a competent professional. This includes adherence to professional guidelines, such as Nice guidance on perinatal care. The second issue is causation, which means proving that the negligence caused the injury, or increased the risk of it, rather than the injury occurring independently. Either way, a difficult birth is not in itself sufficient grounds for a claim, as there may be alternative explanations. Courts and NHS trusts rely on expert evidence, which means that accounts from parents, for all their detail and accuracy, carry less weight. This is why speaking to a specialist Cerebral Palsy Solicitor about your options is a vital step in any claim, as they can advise you on what evidence is likely to be required to prove breach of duty and causation. They can also advise you on speaking to clinical experts to help establish these issues, as an independent expert opinion from obstetricians, neonatologists, or paediatric neurologists can be vital in proving a claim.
Most birth injury claims fall into the category of “Claims brought against the NHS” within the clinical negligence sphere, and are responsible for approximately 10% of claims but 50% of the value of all claims nationwide (NHS Resolution).
One file not five
Here is something that many families forget, or overlook in the short term, when dealing with the day to day practicalities of supporting a disabled child. The file that gets a child the NHS therapy they need is the same one that gets them an EHCP, and the same one that a solicitor will look at if there is a potential claim. The letters from consultants, the assessments, the school records, the hospital discharge summaries, they all go to the same place, and can serve more than one purpose.
Having this in place can save an enormous amount of hassle in due course, not least when it comes to a tribunal on an EHCP appeal, if and when that arises. This is why keeping everything together in one folder is a good idea, along with all the paperwork that goes with it. This way you are not left trying to recall events in due course, or trying to track down letters and documents. Keeping copies of letters sent and received, and filing them in chronological order, sounds like a good thing to do, and it is, not least because very few people actually do it. Maintaining good records allows you to move through the process more quickly and efficiently, whether it comes to your EHCP, a benefits appeal or a review of the events surrounding your child’s birth. The habits are good for everyone concerned, regardless of the eventual outcome, and there is no particular reason to wait to develop them.
A few practical tips, suitable for all-comers
There are a few practical steps that most families can take to help them regardless of the challenges they face. Keeping a dated record of appointments, calls, conversations, decisions, all help you keep track of what has been done and what needs to be done. Filing all letters, even the ones that appear to be innocuous, allows you to do the same. In addition, asking for records early rather than waiting for a particular event or the advice of a solicitor is also a good way to keep things on track. It is not always easy to retrieve records, obtain information and keep track of people at a later date, particularly if staff have moved on. There is no need for you to use a solicitor for these things if you don’t want to, but you should know that they can help you and will be able to act on your behalf when the time comes, if that is your wish.
Statutory advocacy rights are also available to families, as set out in the Care Act 2014 and other legislation, which can be a useful supplement to informal advocacy when funding decisions are being made. Knowing your rights and how to exercise them is part of the job, alongside maintaining your records.
Time limits on claims provide a sensible timeframe for seeking advice, rather than demanding immediate action
Claims for clinical negligence tend to have strict time limits, which generally apply to the date of the incident itself, or, in the case of children, their 18th birthday (or when they reach capacity to understand, if later). This sounds like a long time, and in many ways it is, but there are limitations. As with any litigation, there are advantages to taking prompt action once the decision has been made to proceed. This includes preserving evidence, which becomes harder to obtain the further time passes. It is not uncommon for staff to move on from a trust or organisation, or for your own recollection of events to become hazy further in the future. Having a specialist look at your situation as soon as possible gives you plenty of time to make any further decisions, and is in no way an admission of fault or wrongdoing on your part. It is no different from taking the practical steps to obtain your own records, to prepare for any tribunal relating to your EHCP, to understand what may or may not have gone wrong when your child was born. It is all part of the process, and understanding that is key to managing it.
Advocacy for a child with complex needs rarely has a beginning or an end, as it runs through every stage of need, funding, review or appeal. It is the same for a family looking to understand if and how a particular incident contributed to a birth injury claim. Having the right information, in the right format, at the right time, is the common element in all these challenges, which is why families that keep these things in perspective tend to find themselves better prepared for any subsequent stage.
