The family’s perspective: A True Story

‘Family win £37 million from the NHS for birth negligence’. Well, they are the headlines we see, BUT is that the reality? Do those families actually ‘win’ £37 million to spend as they wish to improve the life of their child damaged by negligence?

Let’s break this down a bit.

At the heart of this is a child who will never have a ‘normal’ life due to proven errors made by clinicians when they were born. BUT for the injury, what would/ could their lives have been? The mother who gave birth amidst a clinical emergency may be physically damaged herself and certainly suffer from PTSD at the least.

The father watching in horror at the emergency unfolding and scared for the life of his partner and new child. Close family and friends concerned and worried for their loved ones.

Often the mum never goes back to work, or if they do, they end up part time at the most. Their child naturally comes first and needs someone to provide the additional care and attend all the appointments and fight their corner. The ripples of that incident go on and on.

Early years struggles wanting a diagnosis, knowing something isn’t right, endless appointments with consultants. A child with complex needs is 24/7 care, 365 days a year.

Marriages and partnerships break down with the strain. Siblings of the child miss out and parents constantly worry if their other children are getting the parenting they need.

Usually, litigation starts by parents questioning what actually happened. A healthy pregnancy without warning turns into a clinical emergency. In my own case, I initially believed the practitioners who said it was my fault. I was overweight, unhealthy, under tremendous stress from a family dispute and that had all impacted-on babies’ health.

Parent blaming is usually first port of call. I still have the letter from the hospital my son was born in after I asked for an internal investigation when he was around 2 yrs. old. It states breezily “thorough investigation and everything was done correctly here, just one of those things, enjoy your baby”. The later Litigation process proved there were many errors despite records going missing or being altered. I am forever grateful to the legal team and experts for unravelling the mess of my sons birth.

Often a legal case isn’t started until the child is older. The parents are exhausted and in shock from what happened and the harsh daily realities of caring for a child with additional needs. But one day they pick up the phone and make that call and litigation starts. You are told the case is for the child and you are litigation friend, you don’t fully understand the meaning of that initially but understand only too well as the case goes on. The Office of the Public Guardian recently defined the parents’ role to me as that of an ‘interested third party’.

The process itself is long and can go on for years. Meanwhile parents are fighting for support, for diagnosis and treatment, for access to an education, for equipment. They get used to putting a note on the calendar when they are told when to next expect something to happen, Endless expert reports, assessments, meetings, witness statements to be written. NHS delaying and inevitably requesting extensions. Eventually it may come to admissions. The NHS accepting breech of care is usually easy enough. Causality i.e., NHS negligence ’caused’ the damage to the child, is fiercely defended. Often parents accept a percentage when the NHS accept their negligence caused some, but not all of the damage. It is 100% admissions when the NHS accept their negligence caused all of the damage the child now has.

The interim or quantum stage as it is known, then begins. This is a period of time when costs for life for the child are quantified. Interim can be a short period or last for many years if the child is still young and the prognosis into adulthood unclear.

Interim is brutal for families

Lack of capacity is pushed very quickly and a Court of Protection Deputy to manage finance and property needs to be appointed you are told. Your friendly litigation team will recommend using one of their own in-house Deputies to make everything easier for the families. You later realise this is actually ‘double dipping’ on fees and means litigation teams earn massive fees for the case and then lifelong fees acting as a Deputy. Not necessarily best interest for the family or the child but certainly a good income for many years for the legal firm.

Interim payments are made to the legal team or Deputy when appointed, to provide care and therapies for your child. The premise being to spend a lot of money in the name of the child to prove lifelong costs. To access those funds, you are told you need to have a case manager to arrange what is needed. Parents breathe a sigh of relief, finally someone who will support us and make our lives easier.

A case manager is recommended by the solicitors and one is appointed

An initial report is eagerly awaited after lengthy discussions with the family who usually have a good idea what would help their child. After all, parents have been to all the appointments, asked the questions, done their own research into the child’s condition, joined many online support groups to tap into the extraordinary fount of knowledge of other parents/ carers in the same position. They are the experts in their child’s needs and often have a good idea of what is needed but hope the case manager will also make recommendations.

A report comes back recommending Occupational Therapy, Speech and Language Therapy, Carers/ Buddy/ maybe some equipment. Parents are a little surprised the hydro therapy they have been successfully using isn’t mentioned, but ok, they go with the process as their litigation solicitors advise. Amazingly most reports are based on this from a child with brain injury but physically fit, to a child who is completely immobile, nonverbal and is peg fed. Case Managers working with legal teams know what is easier for a Judge to accept in terms of costs, not always what is in the best interest of the child.

Good case managers are the best thing to happen to a family and make a massive difference to theirs and the child’s life. Providing much needed professional carers, therapies, support for the family. If good, they are often retained post settlement as the family rely on them. Removal of the non-productive ones are usually one of the first changes a parent will insist on post settlement. Others will stay on, as the Deputy will tell the families they have to have a case manager. We now know different.

Bad case managers make the families lives hell and compound the incredible stress they already live with. Case managers are not regulated, often not qualified clinically yet decide with the deputy how the Childs funds will be spent, all whilst charging massive amounts in their own fees. When a family changes a case manager due to poor performance, the family themselves are often labelled as difficult. A disgruntled case manager losing a lucrative stream of income has even reported the family to social services under the guise of ‘safeguarding’. I have been on a few online meetings where social services were not aware of the fees case managers can earn or that indeed, they are paid case managers and have been vexatious in their claims.

If lucky a family may be provided with some support and much-needed equipment. Case Managers are often absent yet still manage to invoice large amounts for mysterious research or reports. That friendly phone call asking how you are? It’s chargeable and often bumps up the monthly invoice if looking a bit low. Often families don’t even see the invoices, appointing a Deputy means they are often no longer privy to such information.

Case managers are not actually a legal requirement yet families are told they have to have one otherwise they will ruin their child’s case, an often-made comment adding to parents’ stress. There is a positive development to Case Managers though, some have recognised themselves that being a member of an association you pay a fee to join without any need to prove professional competency or qualifications isn’t appropriate. There is a recently formed association that does require competencies in a positive attempt to improve and regulate the sector. A very positive move forward in a previously unregulated industry.

Often families are not privy to nor have access to how the money is being spent, they are told to trust the process during interim to ensure the Childs costs are proven. It will be worth it in the end they are told. If they don’t comply the often-used threat of – you will ruin your child’s case, is used.

The parents are focused on ensuring their child will have financial security and therefore personal support and security for life. They will already have had or still having endless battles with local authorities for support or access to an education. The parents are exhausted with it all. With the case manager, therapists and carers comes lack of family privacy in unsuitable small houses. “But you have to have carers and therapist in to prove costs” families are told… or you will ruin your child’s case.

That means strangers in your small home often through the night. No privacy for family, siblings coming home to strangers in the kitchen when they want to bring friends home. The family struggle on and put up with it hoping they will be able to purchase the ‘forever home’. A house paid for by the claim which would be large enough to provide the child with the care package that is needed and maybe give the family back some semblance of a private life at home.

Often carers don’t turn up, leave their posts without notice or in recent years, can be impossible to recruit. Parents pick up all the care again, hence unable to work themselves. They grin and bare it for the love of their child whilst surviving on carers benefit and trying to ignore all the funds being spent on fee earners. It will be worth it in the end they think. My child will be safe for life.

Sometimes, mums will have their own case for their own damage running alongside. They may receive a small amount for the physical damage they have suffered. Secondary victims such as the father who witnessed the trauma rarely receive anything. Secondary victim rules are currently being challenged in the High Court; we hope for progress there.

Alongside this are endless expert appointments and assessments for the case, both defence and claimant side. Necessary to prove the case but a big commitment and intrusion into the exhausted families’ lives amid ongoing medical care and life or death emergencies for the child.

Marriages and partnerships break up under the strain. Friends and family fade away as they jealously believe they will soon be millionaires and have nothing to complain about. The struggle goes on whilst the family is more isolated. Warned by their legal teams not to talk about anything as it will ‘ruin their child’s case’. It will be better once the case is settled; the parents tell themselves.

After many years (in my case 13) which is not unusual and often needed to ensure post puberty changes in a child are recognised, the day at High court and final settlement being ‘rubber stamped’ comes around.

As an afterthought almost at the end of the process, parents are allocated an amount called Past Care. A lump sum based on the care they have given to the child over and above that of the average child. It is calculated by a care expert and quibbled over by barristers.

It doesn’t compensate for lost careers, loss of earnings, financial security or pensions, but by this time the parents are too exhausted to question. They are made to feel guilty by all those high fee earners for daring to want money for themselves and profit from their child’s misfortune. Families are legally prevented from benefiting from their child’s claim. They also do not have independent legal advice to consult with.

Only once have I heard of a Judge question this amount and ask the parents if they have had legal advice, the parent confused looked at the negligence legal team who looked the other way. The Judge reiterated, they are acting on behalf of your child only, YOU need legal representation for yourself.

I know of no parents, myself included in all the years I have been supporting hundreds if not thousands of families, who have had their own legal representation. Parents rely on the negligence team only and hope for the best, they assume the legal team are acting on their behalf as well. Only then do they understand what a litigation friend actually is. The case and focus are only on the child. Families are dismissed as money grabbers by all involved, including the press.

Case is settled, millions are awarded and the parents exhausted raise a small glass to celebrate but mostly break down and cry. It is a bitter sweet moment. The reality that their child was actually damaged by those they should have been able to trust, truly hits home at this point. Theirs and their families’ lives were changed forever because of someone’s negligence starts to sink in. It is not a celebration; it is real and overwhelming sadness and grief for the loss of the child’s and their own lives…BUT FOR the injury what would life have been?

Then what happens?

Things can and often do work out well. Life goes on, the families live in large houses that are the envy of any friends they might have left. The child is cared for by a team of specialists and life becomes calmer. Court of Protection Deputies are supportive and work well with the family. All is calm and healing starts.

The other reality?

Parents have no legal rights to live in the house without the child’s consent. They are reminded of this often. They are often told they have to pay a percentage of the utility bills for these massive houses by the Deputies. After all, everyone has to pay their way …well yes, but everyone else has a chance to earn a living themselves. A parent’s life has been focused on this child that needed 24/7/365 care. They often use their own past care settlement to pay ‘their share’. Past care monies being the only small amount of funds they will have for their own old age.

Living with a child with complex needs means probably the parents will have a home for life. Living with a child who is physically fit yet needs support and rehabilitation due to brain injury, means the parents desperately want their child to be independent yet know, the child being independent means they themselves and possibly younger siblings will be homeless. Tenants have more legal rights than a parent in this situation.

They are told they have choice over the house purchase…as long as the accommodation expert, case manager, OT sometimes and the Deputy decide it is suitable and can be afforded. Often families can be waiting years for a suitable house to be agreed on and purchased. House prices have rocketed massively these past few years and sometimes, now make it impossible to purchase what they need. In the meantime, they are seen as millionaires yet struggle on caring for a child day and night with complex needs in an unsuitable house and with little support. They won against the NHS, rolling in it others whisper.

Families are judged badly if they include in the plans for the house a separate annexe area for the child and carers. It means carers and therapists don’t intrude into the family side. The child and family themselves have full access to the whole house but it gives some privacy back to the family when carers are with the child. It gives the child going into adulthood, independence and control over their own personal living space.

The often said comments from professionals or carers visiting for the first time “poor thing is stuck on one side of the house on their own” is common and demonstrates the appalling lack of understanding and compassion for a family desperate for privacy, a young adult to have independence they otherwise could not have and the need for some kind of normality. Carers and professionals are needed and embraced for the child, but we all deserve family privacy as well. Families are judged by all they come into contact with.

Disability equipment is expensive, family thinks finally we can now purchase the expensive wheelchair that costs around £8k.

Case Manger has to submit report to Deputy supporting the purchase, report approx. £2k. If purchase is agreed, the Deputy prefers the case manager to order it. Adding on their time arrange and maybe a little bit on top of the purchase price as well.

OT has to be instructed to recommend three wheelchairs, another £2k for their report.

The Deputy has to be seen to be approving payments in ‘Best Interest’ of the child. Court of protection has to approve any costs over £5k and three examples are to be provided to show the Deputy Is making a good choice. Deputy fees and court of protection application fees add up to maybe another £2k.

That £8k wheelchair now costs around £16k and many months for the family waiting for approval and then purchase, if at all.

Of course, we are told as families all costs should be proportionate so we do the research ourselves and find 3 examples to provide the case manager or Deputy directly with. We project manage building work to save costs for our child. We do our own research still into everything. We don’t get paid for this. Families are legally prevented from being paid professional fees and must be grateful for the small amount they receive as ‘gratuitous care’.

Deputies can refuse to provide accounts to parents or the child if over 18. They don’t have to give any reasons, at the most they can just say it is in the child’s Best Interests to not disclose. All of those millions yet the family can have no idea what has happened to it or what it is spent on. Have no access to it, never see a bank statement and no security of tenure in the house they live in. No real compensation for themselves.

They struggle on.

For a parent to instruct a new Deputy, be a joint Deputy themselves with one of the few firms that will do that or appoint themselves as a Deputy is a long and costly process.

Not all families are perfect, there are the rogue ones who want to profit from the child, although I have yet to come across one. Having being privileged and possibly unique in speaking and supporting hundreds of families over the last few years, there are many more families confused, beaten and angered by the unfairness of the litigation process. Insult is added to the initial injury they suffered.

A snapshot in to some of the issues some of these families deal with. Apparently, the family WON all those millions. But did they really?

A snapshot into the realities some families suffer on those big medical negligence claims, taking money from the NHS the neighbour’s whisper.

Quotes from some families still at interim:

“In our situation we had to work as had we given up our jobs they said (we voluntarily gave them up) so wouldn’t get any benefits – if we gave up our home because we couldn’t afford the mortgage – again would get no housing as we had (voluntarily) given up a good home. Family (ageing parents) unable to childmind as they had with our older children because they couldn’t cope with medical/ physical needs of damaged child! So, we had to work and pay out for childminders or nursery. 1 employer brilliant and understood the number of appointments or time off when child ended up yet again in ICU – the other employer disciplined dad for time off caring for his damaged child. Mental health suffered not only of parents but siblings missing out on parents taking to clubs or watching them play rugby at weekend because so exhausted from the week working and caring or it wasn’t accessible for the damaged child. No longer visiting other people because their houses weren’t accessible for damaged child. Changing child on floor of disabled toilet because “changing places” are few and far between”.


“When we saw an expert a while ago, I had to take my child in the manual wheelchair and carry them up a flight of steps into the building – expert was on 3rd floor, child alone in wheelchair could fit in the small lift – we had to put them in lift, press 3 then leg it up the stairs”


“I once asked our case manager – who checks invoices and time sheets of the carers? – as no one had asked me when carers from the agency had actually been in the house (we had a lot of no shows over a period of months). They looked at me in surprise and said “we trust other professionals; we don’t need to check”. I pointed out we had been let down by professionals when our child was born. Did they not check the receipt when they go shopping to check they were charged correctly? Basic admin and accountability are just never considered. Present an invoice to a Deputy and it will be paid. OPG check annual accounts, invoice presented and paid. Done. No one checks with the parents have they actually had that service. We later discovered the case manager had been invoicing for full carers for months and the Deputy paying it without even checking with us. We hadn’t had any carers at all at that point for 6 months!”


This article was written by a mum who achieved a settlement for her son after medical negligence at birth. Admin of large private and public online support groups for many years talking and supporting hundreds of families going through litigation for birth negligence. Now one of the Directors of a charity solely set up to support other families going through litigation.

To top