SNJ note: Parent-carer of a child with complex needs and SEND campaigner, Rachel Adam Smith, joins us as a columnist. Her article is followed by the views of a paediatric physio. Rachel wants to emphasise that she entirely supports the families of brain-injured children being financially compensated for the avoidable damage done. Her article is intended to highlight the true cost it reveals of caring for a child with complex needs.
No one begins pregnancy expecting their baby to have severe disabilities. Yet some are born disabled while others, sadly, are injured at birth. Either way it's devastating, but for several years, I've noticed a clear disparity between families who have few issues purchasing expensive equipment such as the right wheelchairs, or paying for much-needed regular therapy such as physiotherapy and speech therapy.
This is often because after some years of struggle while a claim is assessed, birth-injured children eventually receive a financial pay-out, enabling access to the right equipment, therapy, carers, accessible homes, and education. While this is deserved, families of children born with a life-long disability are not able to make any similar claim because it was no one's fault.
What does this say about the way society functions, and how it provides for disabled children? Does awarding compensation mean one family is actually more 'deserving' than another? Shouldn’t both be treated equally and given the same opportunities, whether their disability is congenital or acquired? If judges in birth injury cases can recognise that a child requires significant sums to fund therapy, housing, and equipment, why do governments not recognise the same is true no matter how a child is disabled?
A careless society
Birth injury pay-outs from medical negligence will include what's needed for support. But would such high levels of pay-out be necessary if society provided adequately for all disabled children in the first place? I have noticed lawyers stating interim payments can be made to meet the child’s needs. This illustrates society is failing so many disabled children who are born disabled, because why would interim payments be needed if the governments provided adequately for them in the first place? We only need to watch programmes such as DIY SOS to see how many families are in desperate situations in unsuitable housing, left reliant on disability grants or entertainment programmes coming to their rescue.
You knew and you still had her? 🤬
On many occasions in the early years of my daughter’s life, I was asked by medical professionals, “Did you not know before she was born?” Even when I asked a doctor for help when I was exhausted, his heartless response was, “You decided to have her.” I have heard of other families who've had similar things said to them. I'm sure this attitude wouldn't be taken with parents of birth-injured children.
Recently, £37 million was awarded to the family of a brain-damaged child. and I'm sure this was a just settlement to an avoidable tragedy. However, many children whose genetic conditions were undetectable before birth require a similarly high level of 24-hour care. These families will never get the help that they so desperately need. They will be left having to apply for charity handouts for equipment, they may never be able to have an accessible home, and their child may mis out on the same standard of educational provision or therapy.
Should it matter if there's someone to blame?
Does the ability to assign fault mean that one child should get more chance at success than another? Should one child be left unable to develop because of a lack of therapy? Should one child be left unable to bath or shower adequately due to their inaccessible home? Should one family get adequate rest because they are able to pay carers a higher rate of pay, while another family is left exhausted?
Early intervention is so important for any child’s long-term outcome. The UN Declaration of Human Rights says, “All human beings are born free and equal in dignity and rights.” But they're not, are they?
A paediatric physiotherapist writes...
I am a paediatric physiotherapist with over 30 years' cross-sector experience. I have worked with many children over the years with complex physical and learning difficulties as a result of birth trauma, accidents, or from birth due to genetic or unknown reasons that give rise to physical and cognitive disabilities. I act as both treating physiotherapist and expert witness for those entering the litigation process in ‘at fault’ cases all over the UK and abroad.
Families I've worked with come from all socioeconomic backgrounds, from the children of hedge fund analysts, barristers, and CEOs, to families who struggle daily to feed, clothe and house their children. While childhood disability doesn't discriminate, how their needs are met does---but not in the way you'd think.
Those who seek compensation if there is a party at fault, seek to ‘place the child in the position that they would have been were it not for the index incident.’ Successful litigation will fund care, therapy, equipment and housing to do that. While this never returns the ‘lost’ child, life generally is improved and for some, the financial position exceeds that which they may have had previously.
No fault = endless struggle
Those who have no one to blame enter into a lifetime of battling to get the services and equipment they need. Grants from statutory services to help adapt homes and pay towards care are never, in my opinion, enough to cover what's needed.
Therapy services are underfunded and constantly spread thinner and thinner. Even the clinicians believe their skills are no longer unique, with the mantra of ‘cascading training’ that rarely meets the need. It is interesting that many of these therapists leave the NHS to provide highly skilled private sessions on a regular basis to these clients if they can pay, taking their expertise with them.
As a paediatric physiotherapist, it's my desire to help all children with disabilities achieve their full potential but my hope is that all children regardless of the aetiology of their condition should have the same opportunity to do so.
Cost of Birth Injury Claims to the NHS
The failures in maternity care over the past decade has left more than 1,200 children permanently brain-damaged and cost taxpayers more than £4 billion in compensation. According to NHS Resolution, the number of maternity claims has increased dramatically from 391 in 2009 to 765 in 2019-2020. 
Every baby born in the NHS in England now incurs indemnity costs of £1100. Roughly, there are 600,000 births annually and the NHS pays around £12.7 million a week for the costs of obstetric harm. The rise in costs is unsustainable. Spending on clinical negligence is increasing much faster than funding for the NHS, tripling in the decade from 2009. That means that the proportion of scarce NHS resources is going to cover the costs of litigation instead of care. This is worsening.
If care was improved by improving staffing levels, competence and clinical decisions then I would hope that not as much money would need to be paid out for birth injuries. This money could be diverted into improving care and into equipment and therapy for all with disabilities.
Costs of raising a disabled child in the UK
Life costs more raising a disabled child. Research from Scope shows that on average, a family with a disabled child would have to pay £581 a month to have the same standard of living as a family with a non-disabled child. For 1 in 5 families, these extra costs come to more than £1000 a month. 
According to Scope, extra costs mean disabled people have a lower standard of living than non-disabled people even when they earn the same.
All disabled children should matter and have equal chance. It is incredibly sad when a baby is injured at birth, devasting for both the baby and the family. But it is equally devasting for a baby who is born disabled and their family. Both should be given the same levels of support, without the need to fight every step of the way.
- BBC One - DIY SOS
- Family wins £37m in one of the largest maternity negligence claims in NHS history. The Independent
- The Australian National Disability Insurance Scheme for cerebral palsy: an end to the "forensic lottery"? - PubMed (nih.gov)
- Maternity compensation claims cost NHS £4 billion The Independent
- Clinical negligence costs: taking action to safeguard NHS sustainability. BMJ
- Life costs more for disabled children and their families. Scope UK
- UK government is failing disabled children says United Nations
- Councils wasted £253 million fighting parents at the SEND Tribunal since 2014 reforms
- Foetal Alcohol Spectrum Disorder: What doctors and schools need to know
- Partnering with clinicians to reverse Rett, my daughter’s rare disease
- Ten Top tips for when your child is diagnosed with a rare disease
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