'My non-verbal son has up to 5 seizures a day but is left waiting 8 months for an NHS hospital appointment'

A South London mum whose 36-year-old non-verbal son has up to five epileptic seizures a day and who needs round-the-clock care due to his disabilities has said they face waits of up to eight months to get an NHS hospital appointment. Nabila Tahar, 63, who lives in Tooting, South London, is the primary carer for son Saquib, who has severe autism, learning disabilities, epilepsy and a heart disorder.

She said he is non-verbal, requires care 24/7 and has seizures at least twice a day although this can increase to five which can happen at any time and cause "severe" injuries. Nabila claims she is often told they have to wait several months up to "eight months sometimes" for an NHS hospital appointment, making her feel Saquib is "never given priority".

She said most of Saquib's appointments are at St George's Hospital and, if there is a cancellation, this can exacerbate his health conditions and anxiety and place enormous strain on her. She said waiting for appointments and crowded waiting rooms can make Saquib "distressed", and on one occasion, after a last-minute cancellation, she said "all hell broke loose".

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Nabila told PA Real Life: "Recently, he had an appointment with the epileptic nurse, so I told him, 'Saquib, we are not going to the day centre'. He was all ready to go and then she rings me and tells me, 'Sorry, I can't come to the hospital today because of a family emergency, so I'll do a phone appointment later in the afternoon'."

She continued: "When I told Saquib we are not going to the hospital, because he didn't understand and he was all prepared to go, all hell broke loose in our household. He got so angry, he was shouting, throwing things at us. He doesn't like last-minute changes and I understand things happen, but it's not good for Saquib."

Nabila explained that Saquib was not hitting certain milestones during his childhood, and this led to autism and epilepsy diagnoses at the age of five and six respectively. "He was developing slowly compared to other babies, but the epilepsy came after the autism diagnosis," she said. "We didn't know it was epilepsy because, when it first started, he would vomit and then go to sleep but then the doctor finally diagnosed it as epilepsy."

Nabila said she believes Saquib has "epilepsy which does not respond to medication", as she has seen little improvement over the years and his condition is still "very active". He is taking three medications for epilepsy but has experienced numerous side effects, including swollen ankles, feet and legs known as oedema and incontinence.

For the oedema, Nabila claims they had to wait four months for a hospital appointment before he was seen. She explained that Saquib has at least two epileptic seizures every day, and they can happen while he is eating or on the toilet, meaning she "always has to be alert".

The seizures last on average around six or seven seconds, with the longest being one minute, and she said he is often "very confused" afterwards. On one occasion, she said Saquib had a seizure at the top of the stairs and "came tumbling down", landing him in hospital for several days. "I had to call an ambulance, he was unconscious, he lost two teeth, and he was in hospital for many days and had such bad bruising," she said.

One of the challenges Nabila faces is that, if Saquib falls, she struggles to pick him up on her own particularly as she is getting older and had back surgery two years ago. Given Saquib cannot "express his feelings" or tell her when he is in pain, Nabila has to read his body language and facial expressions and this can be challenging.

"It's sad but he can't tell me that he's got a headache or something's bothering him. We just have to see by his body language and behaviour that something's not right," she said. "You just wish that he'd be able to tell you, 'Mummy, my back is hurting' or 'My tummy is hurting'."

Nabila adores her son but said "life is not easy" as he requires "constant supervision" and he often "lashes out" if plans change last-minute, especially as it takes him a long time to process information. She said her whole world revolves around Saquib she helps to feed, wash and dress him, and assists with his toileting needs and she does not have external help as he does not respond well to new carers.

While he has been given a hospital bed to use at home, which is padded and prevents injuries if Saquib has a seizure, Nabila said the delays in NHS hospital appointments can make her feel "anxious". She is particularly fearful about the future, adding: "God forbid something happens to me and I might end up in hospital, then what's going to happen with Saquib?"

Nabila said Saquib enjoys arts and crafts and puzzles, and he attends the centres Generate UK and Workshop 305 several times a week, where he does a range of activities including pottery and cooking. She wants to raise awareness of Saquib's health conditions and hopes hospital appointments will become more regular and consistent to help give Saquib the best quality of life possible.

Nabila said: "It has been a hard, hard journey for me and Saquib, especially now that he is getting older, I am getting older. I don't know what's going to happen in the future, but I'm hoping things will be good for us, for me and Saquib, especially for Saquib if I'm no longer around to look after him."

She continued: "I hope the NHS, the community, the GPs will all work together and look after him. The NHS is doing wonderful work... but I just want Saquib to have the best quality of life because he's going to have these issues for the rest of his life, they're not going to go away."

A St George's spokesperson said: "We are really sorry to hear about Saquib's experience and our specialist learning disability team has now been in touch to see what support we can offer the family to avoid this happening in future. We make every effort to avoid cancelling appointments, however, regrettably there are some instances that are unavoidable and we apologise for the inconvenience and distress this can cause, particularly for those with learning disabilities."

Saquib and his family are working with leading healthcare technology company Deep Medical and the NHS to help support the nation to help tackle health inequality. To find out more, visit: deep-medical.ai.

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