Hiya Londonbound, It's not just practical help it's also health care that's completely lacking..even when someone like my son is on aftercare....I'm busy logging the avoidance services are using.
The latest.
So another week of many with no significant changes in the attitude of a learning disabilities team ignoring that my son is having numerous seizures both day and night.
His allocated consultant has had the chance to view recent videos to review him, but he hasn’t even bothered to acknowledge my email containing the videos.
It is deplorable that someone allocated to my son’s case and collecting a substantial wage from the NHS trust he works for could be allowed to ignore my son and his seizures for almost a year and do absolutely nothing to assist medically with any medication to help alleviate the distress these particular type of seizures are causing to my son who is a man of 35 with learning disabilities and autism and who is a client.
This level of ignoring is also being overseen by an Acting Divisional Director of Nursing and Therapies who is well aware by having involved herself during most of the past year. No doubt her managers are also responsible and aware this is happening. She has confidently informed me that I can contact the Chief Executive of the service who she calls by his first name when she’s mentioned him.
You are of course welcome to contact Richard, please let me know if you would like his details.
However, she did not provide me with the Chief Executive's email address or details when she said she would do so. When I confirmed I would like these details I wrote my reply to her on 6th October 2020. She hasn’t provided them since then.
It is no use asking this Director to sort anything out as she replies in a parrot-like fashion to even the request to have the ignoring consultant changed with a continuous quote of various sorts:
That he will remain for consistency for my son.
THAT MEANS THE CONSULTANT WHO IGNORES WILL REMAIN CONSISTENT IN IGNORING MY SON’S NEEDS AND ALL WHILST BEING OVERSEEN CONTINUING TO AGGRAVATE BY HIS SOLID REFUSAL TO REMOVE THE INFORMATION HE WROTE IN CLINIC LETTERS WHICH HAS BEEN FLAGGED AS INAPPROPRIATE, OFFENSIVE, AND MISINFORMATION BY MYSELF. INFORMATION ON ONE OCCASION WHICH HE WROTE ENSURING WOULDN’T BE CIRCULATED AND, IT WAS IN ITS UNCHANGED VERSION. SO I ASSUME CONSISTENCY CONSISTS OF A CONTINUATION AS IT HAS SO FAR BEEN A CONSISTENT SITUATION OF MISINFORMATION BEING WRITTEN IN CONTRAST TO WHAT I HAVE SAID TO HIM OR ANYTHING I DO SAY TO HIM,
It all went wrong the minute he was actually allocated to my son’s case and from the very first attendance, he made to a 117 annual meeting.
Once everybody at this multi-agency meeting had been introduced a minute/ note-taker also walked in and sat at the meeting. Later it was found this person was a Business Support Manager.
She informed me that :
She attended the meeting to take minutes, the notes she made for the meeting informed the consultant’s clinic letter, this clinic letter is the only minutes of the meeting.
MY QUESTION HAS BEEN SHOULD A RANDOM BUSINESS SUPPORT MANAGER CONTRIBUTE TO A CONSULTANT’S CLINIC LETTER REGARDING A CLIENT WHEN SHE ISN’T EVEN PART OF THE COMMUNITY TEAM FOR MY SON. IS IT EVEN ETHICAL PRACTICE FOR HER TO HAVE PRODUCED NOTES AND WITHOUT INFORMING ME OR EVEN GIVING ME THE CHANCE TO COMMENT. GIVEN THEM TO A CONSULTANT THAT HAD NEVER EVER HAD ANY CLINICAL OR OTHERWISE CONTACT WITH MY SON BEFORE EVEN. SO HE COULD USE THOSE MINUTES/NOTES AND CONCOCT A CLINIC LETTER WHICH HE WOULD LATER ALLOW TO BE CIRCULATED TO ANOTHER ORGANISATION (NON- HEALTH) THE CLINIC LETTER CONTAINED MEDICATION NOTIFICATION AND HIS DIAGNOSIS AS WELL AS PERSONAL DETAILS CONCERNING MY DECEASED MOTHER (SHE HAD DIED 38 YEARS AGO). INCLUDING LOGGING IN MY SON’S HEALTH FILES MY MOTHERS SPECIFIC FEMALE CANCER.
She cannot provide any further information and again would request that you direct all further inquiries to Acting Divisional Director of Nursing and Therapies or my son’s clinical team who will be able to support.
SO SHE WAS THEN AFTER TELLING ME THE ABOVE DIRECTING ME TO THE CONSULTANT AND THE ACTING DIVISIONAL DIRECTOR OF NURSING AND THERAPIES WHO ARE CURRENTLY WORKING SIDE BY SIDE TO IGNORE AND OBSTRUCT TREATMENT FOR MY SON AND IN DOING THAT ARE ACTING TO DELAY HIS HEALTH CARE NEEDS BY THE IGNORING PROCESS.
The ignoring process is part of the consistency. It is used at all times I request support for my son from the community team and they now expect to leave it as it is as a point of contact. While my son has endless amounts of seizures during the day and night.
He is not on a therapeutic amount of medication so he’s in major distress while he has these seizures causing hallucinations on a very daily and nightly regular basis. For example, he was thrashing around all night from midnight to 5 am early yesterday morning. He was too frantic to be calmed and too noise-sensitive (noise-sensitive from seizure activity in the temporal lobes).
By the time myself and a P.A. managed to enter his room safely he was soaking wet from sweating as he had been so distressed. He had to be changed, his bedding and he was hyperventilating. He had been terrified by seizure activity and was still shaking severely. He was also exhausted as was both the P.A. and myself dealing with this all night.
One person couldn’t possibly cope with that alone. In this case, one person is paid and the other is not.
The thing is, maybe it could have been easier if the consultant had reviewed his client during last week and offered some kind of help while there is an endless wait for neurology. What only appears to be on offer is a virtual review and that was the week before with me and I am not my son the client. Besides, every time I personally have accommodated a review, my words have been twisted by the consultant. Which in turn has left my son without proper treatment and incorrect guidance, of his medical presentation which is then placed, in writing, within my son’s medical file. In order to keep in tune with the last ones which are also incorrect. It has been going on for years. However, this is this new consultant’s first objective, way in front of my son’s medical treatment.
What the learning disabilities service needs to understand is that due their negligent lack of commitment towards my son’s medical care that they are depriving my son of his liberties. They are failing to treat my son’s epilepsy and failing to ensure he’s not experiencing the distress he is being left with through their failings to acknowledge it and negligent ongoing ignorance (Which incidentally is extremely abusive)
They need to understand it is not acceptable to falsify his presentation by concocting false accounts of it only serving as being useful to uphold a massive amount of wrongdoing on their part. They need to stop using my son’s lack of capacity to secretly write lies about him and hide it within health files they aren’t allowing me to view as his mother and lifelong carer.
This organisation is not working with me and fully expects me to provide them with information and in return full information is being withheld by them. They aren’t allowed to do that and they should be open and honest. It is obvious they aren’t being and don’t intend to be either.
Then I found out this:
After emailing the consultant (who I had been told I had to contact if my son needs assistance: note son also on 117 aftercare) This is also the allocated consultant and ‘ health team’
Who blacklisted my contact with him (not my choice to contact him)
The sender IP Address is blacklisted. (in
reply to RCPT TO command)
THEY NEED TO SORT THEIR CONSULTANT OUT AS BEING FIT FOR HIS JOB. TO ADD TO THIS THE ACTING DIVISIONAL DIRECTOR OF NURSING AND THERAPIES HAD ALSO BLACKLISTED CONTACT BY EXACTLY THE SAME METHOD.
Their actions confirm all I have said so far.
The evidence is their problem now.