I have an urgent matter I need help with.
I have been asking for a review of my son’s medication for at least 2 years now and have been totally ignored by two consultants and a number of managers. I made a complaint to health which has been ignored. Now my son’s G.P. is refusing to issue medication unless it’s reviewed. This has now left my son with no medication for epilepsy that causes hallucinations. He is reacting to this and becoming unmanageable. I really don’t know where to turn.
I have an urgent matter I need help with.
Oh Maine, what an appalling situation.
I’m sure others will be along with suggestions, but in the meantime, 111 or perhaps could you get him to A+E? Maybe when he has an episode phone 999. Someone has to listen!
Hi Maine, if your son’s condition has deteriorated and it is an urgent situation, could you take him to A&E, or call an ambulance? Perhaps then he’d get some meds to stabilise him and an urgent referral to be reassed?
I don’t have experience with epilepsy but I was not afraid to take my mother to a&E when she needed medical help.
This is totally unacceptable. If it was me I would ring the GP surgery urgently first thing and speak with the practice manager (apologies if you have already tried this).
Surely they should continue to prescribe until there is a consultant review. The practice manager should urgently contact a consultant.
If it is more urgent than a phone call tomorrow morning then it has to be 111.
What an appaling situation to be in.
Maine, it is dangerous to just stop taking epilepsy meds. Your GP must know this and should have been in contact with the consultant to sort this out.
I suspect your son would find A&E very stressful, therefore an ambulance could be better than taking him yourself. Without meds he must be having seizures - next seizure, call 999. When S started having seizures in his teens it was only when I started calling 999 that I got taken seriously.
What age is your son?
If he is under eighteen I would contact your local social services. This can be deemed as a child protection issue. This may sound drastic but once social services get involved. This hopefully action should take place.
You could also contact your MP.
I agree with Melly. I am reminded of a friend’s daughter who stopped taking her epilepsy meds. It can be serious so I’d like him to get some more medicine urgently.
Thanks for your replies, everybody. I have contacted the surgery this morning. I asked to speak to the practice manager but told not available. Ended up I had to speak about the problem with the receptionist. She said she would speak to the doctor. I also emailed the nurse who thinks it’s okay to ‘get back to me later’.
The whole problem has occurred due to consultants ignoring reviewing my son’s medication and instead making referrals to neurologists which takes over 18 months. My son could never manage to attend a hospital clinic and the consultant was very aware of this situation yet referred my son to a hospital 15 miles away.
Getting back to the situation of my son’s medication, the previous consultant wrote to the G.P. some time ago stating the G.P should review. She said it wasn’t her responsibility to review complex epilepsy and would write to the consultant. This was about 12 months ago. I didn’t receive a copy of the letter she sent or any update and most of all I received no appointment to review my son’s medication.
I have been bogged down with a son of 34, who’s epilepsy medication had only been controlling seizures by under an eighth. Mainly they aren’t controlled and never have been, in the 15 years he’s been on the medication. Temporal lobe epilepsy is difficult to control. It is also difficult to manage as it causes hallucinations both visual and auditory. My son has autism and learning disabilities and reacts to distortions of all the functions of the temporal lobes. It causes distortions of sight, hearing, taste, all the sensory functions. He smells burning via hallucinations, voices just like within schizophrenia disorder, only this is a very small part of the overall effects of temporal lobe epilepsy. Also, he’s housebound, by the terror he might have a seizure and the fear of going into a hospital…All places besides home are a potential hospital for him. Anxiety causes seizures and he obviously gets anxious if he thinks he’s going anywhere that might be a hospital. The seizures are dangerous to him and anyone caring because he will get so distressed and frantic he will actually fight to the death and no-one can get near him without risking very serious injury. It would be impossible to get him to A&E without massive risk. He would probably need 10 police officers to get him there and they would have their work cut out.
I hope I can resolve this issue with no medication very quickly but I am hitting the latest COVID GO SLOW SYNDROME, which is applied to almost all tasks these days.
Thank you Maine for explaining about the situation. I hope you can get something sorted out soon.
Sorry to hear that, Try and explore options available and keep persisting on trying to get some support from the people you want support from. Which are the managers and consultants.