To sue NHS for delayed treatment and diagnosis

[SENmom17]

Hello, I am considering suing my local hospital for a series of incidents some of which aren't related but were negligent.

I have a son who is 3years and 6 months old who has had a tough couple of years. My son has a developmental delay, severe autism, non verbal and epileptic

January 2023 my son had a prolonged seizure (45min) status epilepticus whereby he had to be admitted into the PICU for a couple of days. Following this he was discharged to the community development centre CDC for neurological investigations (MRI and EEG). These neurological investigations weren’t offered to my son I complained 5 times verbally but still wasn’t acknowledged until I took him to another hospital following a febrile seizure, the drs at the hospital were shocked that my son didn’t have any neurological testing after the status epilepticus, the hospital booked him In for a 20min EEG that showed he has low electrical activity for his age and was given medicine 9months after his first seizure. in between this my son was having multiple absent seizures daily which was picked up in the scan. I feel like this was neglect because the community drs didn’t follow up any investigations and didn’t care about the concerns I had. During this time my son wasn’t able to consistently attend physiotherapy (he wasn’t walking) at all.

now my son is still having absent seizures and isn’t sleeping well (sleeps 3 hours) was sleeping for 12 hours before. I spoke with his paediatrician yesterday who advised I up his dosage and then discharged me to another team who he tried to discharge me to last year but still hasn’t responded to him (his words not mine) the paediatrician also said to me that there’s nothing he can do to help my son at all with the sleeplessness and dismissed all of my other concerns.

In March last year the same hospital misdiagnosed my son with croup 5 times and gave my son antibiotics and oral steroids and the blue asthma pump to help with my sons breathing (he wasn’t breathing properly, wasn’t eating at all and lost his voice completely). We returned to hospital 5 times 2 of which he was admitted for a couple of days and was given oral steroids and oxygen. the last time I took him to that hospital I demanded that they take a blood test as my son was in and out of consciousness and was barely breathing they then found out that his kidney was leaking acid and then I demanded a ENT exam whereby they found that he had a very large granuloma growing in his breathing tube which had blocked his breathing due to injury from an intubation! he had to be rushed to surgery in GOSH whereby the dr said if I had taken my son to the hospital 1 day later he would’ve died. Our hospital found the mass in throat after 2 months of consecutively going to A&E and me demanding a blood test and a internal throat examination.

I feel so hopeless! I have complained enough and it has been dismissed. Should I contact a lawyer/solicitor what should I do!

I would liaise with the hospital's patient advice and liaison service PALS) to receive a full copy of all of his records then assess it in the cold light of day with a legal bod if you feel there may be enough there to progress with.

It sounds like your ds has been through the mill and this has been compounded by his disabilities.
My suggestion is that you ask your GP for a long appointment where you wish to have a discussion about what’s gone wrong with your DSs treatment. I’ve found with parents of children with complex needs, it’s really easy to misunderstand what’s being said, especially in the rush of a busy hospital clinic / ward. You need to be able to sit down quietly and go through his medical notes with the GP. The other route is, as has been suggested, to contact PALS. Again, they should be able to support you in understanding what has happened to your DS.
Try to remember, with such a complex health history, any treatment for your DS will also be complex. With epilepsy in infants, treatment will look very different from one child to the next. If you’re searching for info online, you may be getting mixed messages. Just try to remember, the medical professionals your DS sees all want to help him, they are doing a difficult job in challenging circumstances. It sounds like you have a long journey ahead of you with your DSs needs and you want to work with the medics rather than it becoming a battle. Suing a hospital will cost you tens of thousands of £. I hope you get the answers you want and wish your DS well.

That is horrendous - poor you, and your little one.

People have successfully sued the NHS before for failing to progress diagnostic tests in a timely manner. Your case is complex, with multiple factors; you will need to speak to a solicitor to get advice on your prospects of success. Many will work on a no win no fee basis if that’s a more affordable option for you (but consider that in this model a sizeable percentage of any damages awarded will go to your solicitor). You can also get ATE insurance which protects you again an adverse costs award, if you have a sufficiently strong case.

I hope your son’s care is more straightforward from now on, you both deserve better.