So I am now in a position where my son’s medication is being withheld. I can’t order it because it has to be reviewed by the consultant. This decision has been made at short notice by the G.P. and just when he is about to run out of meds. The G.P. only allows a repeat prescription when the meds have almost run out and the request has to be made online. I found out about this situation of not being able to order them over this weekend.
The consultant ignores and won’t respond to me and when he has, he’s misquoted what I have said on every occasion I have ever had contact with him. He has also right from the offset misinterpreted in a deliberate manner my son’s medical presentation and misinformed other professionals regarding my son’s health needs. He also allowed the emailing of a clinic letter addressed to my G.P. and allowed it to be sent to social services. I have complained to his service but for many months I have had no response.
He decided before he had even met my son how he was and placed it down in writing. Incidentally, he still hadn’t met him and he still misinforms other professionals, including my son’s G.P. By writing letters containing false information in order to misguide my son’s health needs.
He has busily been ignoring everything I say and is refusing by ignoring to rectify or correct any of the incorrect or misleading information. He has been constant in actions to derail my son’s health or ability to allow any referrals to another specialist to take place. This is all due to his incorrect assumptions regarding my son.
For example, when asked, by him, I answered the question about my son’s current ability to go out into the community. By informing him that my son will only go for a walk on the same short route because his seizures are so problematic that on a number of occasions he had serious seizure activity whilst in public. I explained my son is very anxious regarding this and being autistic on the lower end, that he had become phobic about it a large number of years ago. I also mentioned that my son goes out in the car and will not leave the car to go anywhere other than back in his home afterward.
The result of this was the consultant deciding to write informing other professionals that my son sometimes doesn’t leave the car. Due to this, the neurology department sent out an appointment for my son to attend a clinic that he was unable to access. Not only this, but a neurology fellow was placed on my son’s case, then wrote stating my son was ‘reluctant’ to go to his clinic appointment and that she would send another appointment for him to attend.
Thus, this then left my son in a position of not being able to access treatment. He has learning disabilities and autism so would not be aware of this situation or what it would mean. This consultant had created a situation where he was ensuring my son received no adjustments to be made for my son’s health needs.
To top all this, the consultant refused to allow me to view his referral to the neurology department for my son. On the basis of my son’s lack of capacity. The truth be known that the referral was inadequate or factually incorrect and that has to be the case, as neurology are definitely under the impression that my son can manage an outpatient appointment for an E.E.G. and at a busy sit and wait clinic. If there was mention of the situation, then they wouldn’t be persistently sending out clinic appointments he could never attend.
This, of course, is holding up any possible specialist treatment for my son and his uncontrolled epilepsy. A medical issue that is so severe it has already caused my son great distress and immense suffering. Not helped by the last consultant who mirrored the very same, by referring to neurology and ignoring his role in my son’s health care. By the very same method.
It takes years to get a neurology appointment or any response from that service. Especially when a different ‘specialist’ consultant doesn’t relay any urgency to the situation. Which then causes a low priority to the patient by other specialists. This is what has happened to my son.
Worst still is the fact he should have been referred on to neurology decades ago and not just in the last 4 years as a tool for a consultant who is holding my son’s case to totally ignore him. Quoting a neurology department as ‘the lead’ when they haven’t troubled themselves to give an appointment he can access.
One telephone appointment in 4 years amounts to poor service. Not even a follow-up or a virtual meeting either. Not even so to gauge the need of their client or even ask about the problem with attending a clinic. Simply nothing from the neurology student controlling my son’s case without actual neurology clinician involvement.
In a case as severe as my son’s if proper information had been sent upon referral I have to ask myself would a student be dealing with my son’s case at all? And the answer is a definite no. It is because the referrer hasn’t properly referred in the first place and that is a fact. That consultant isn’t doing his job properly and disregarding my son’s health in the process.
And his services managers and a director is allowing this to happen and also disregarding my son and his health. In a very discriminating manner towards him. They are trusting a bad consultant and of course, only the unpaid carer who also happens to be his mother cannot have their word trusted by a biased NHS service.
It couldn’t possibly be them at fault. The thing is that it’s very much a gang effort on behalf of the learning disability team. They are renowned for inadequate services towards people like my son with complex disabilities that they much prefer to palm off on a parent. Especially an unpaid one.
Also passing the buck of the bulk of care and using terminology not to work with a parent but against them. All while being content to leave the full situation at home behind closed doors. While the ‘service’ is freed up for the less disabled population to access. Under normal circumstances that is.
Right now they gleefully rub their hands while they cash in on clients’ closed services, making zero effort to make services available for even the chosen ones.
They recently wrote to my son (who can’t read or write) to tell him about services closures and how sorry they were and that Covid was the cause.
Naturally, they knew very well it would be me who would read this junk mail. Why it was sent is another story of the standard covid letter, with the latest excuses for non-service to those it would affect. It was purely sent to me as a reminder of all the services my son was completely excluded from back in 2012.
Exactly why would I need to know about the services they’ve closed for others due to the Coronavirus? These services have been specifically closed to my son since 2012 and their ‘specialist day centre completely non-available before that. Not to mention, a number of years with simply no respite between the years 2007-2012 due to respite unit closures.
Now they ‘protect themselves’ further by constructively preventing my son’s medication and during a national lockdown.