There are many questions that need to be answered relating to the shoddy and ridiculous mess the services have created by their stubborn ignorance over the past 3 years.
It may be all well and good for social services to have baled out and the learning disability team too…and to have not addressed issues since, in any form nor fashion. Still, in 2020, they are following the former ignorance, they have subjected me to, persistently in the past 3 years plus now.
I want to know why I haven’t had any sight of the support plan after completing my carer’s assessment in 2018 and why I have persistently been sent ‘a copy of the carers assessment’ instead, by the Council, whenever I have asked for a support plan to be produced. I have the right to receive support in my own right as a carer and they have denied me this.
Over a large number of years, the situation has been an ongoing issue, which has never been resolved by dogmatic individuals who have been allocated and their managers who are always ignoring it. Many managers and staff working for both The Council and the Heath team, at this time held and also hold rigidly dogmatic views.
What they fail on all scores to realise, is that there can be no progress until they address the main issues.
I recently received an encrypted email from someone who very well fits into this category of persistent refusal to acknowledge the situation and who also chose to use sparse communications in order to ‘justify’ his lack of duty of care towards my son. He used a referral he’d made around 20 months ago to a neurologist who hasn’t so much as sent an appointment. Then he excused himself by mentioning ‘community nursing’ as an excuse for not bothering with my son.
The matter has to be addressed before any suggestions are made of the implying of more professionals visiting. The fact that I am the main carer who is currently in a position of none support of a support plan for my needs that aren’t being met, is an issue that must be resolved.
I am, for example, expected to cover paid carers for 19 weeks in total annual leave which by Law I have to allow. That leaves me in a position having to do this unpaid and with no consideration of exceptional circumstances being even considered. The package itself isn’t adequate to provide a double 19 weeks pay in order to employ another carer for 19 weeks of a year. Plus there is the issue of sickness which also is sudden and random and at any moment’s notice, it can forcibly make me have to care unpaid for long periods of time without a break. That is on top of the care I am made to provide myself which totals way over what would be considered working unpaid full-time plus in fact.
All these general facts make it impossible to form any agreement to even have more unnecessary and proven useless ‘nurses’ coming into my home. I need to rest when I’m not caring and I’m entitled to at least 8 hours of sleep.
Although that was acknowledged by the professional who withholds my son’s services, on the next breath he’s breaching this situation by attempting to force a previously terrible nursing service, into my home.
Not only has it proved to be a terrible service I have had no choice but to have to complain about it and those complaints have not in any respect been resolved or properly addressed, as yet.
Nurse A) Underhandedly, caused safeguard complaint behind my back, when she had been visiting on a regular basis for many years. Suddenly, she met with a certain social services individual (who had never met me or come to visit but was about to) and this nurse actually created a safeguard visit about ‘it was cold’ in my house. The nurse had been visiting for many years but had never mentioned this before. Not only that but in attempting ‘to keep her nose clean’ she also caused the individual from social services to do the nasty act…and then allowed this service to back up their unreasonable actions with her name attached.
Of course, it was a waste of social services time, as they already knew it would be. For one, it was untrue and for another, it was found to be untrue.
Nevertheless, neither service apologised for it’s doing. In fact, it was brought right up by the professional from Health who refuses his duty of care to my son, at a much later ‘meeting’. Even though it was dropped by the service who uphold their actions in just turning up wasting my time and energy and backing up their actions via a totally untrustworthy nurse.
The best part of this, was the mention just at the beginning of last year of that same nurse ‘coming out’ on a regular basis. Who in their right mind would simply agree to that?
That nurse actually caused me to heat my home all the time and accrue a 15 hundred pound fuel bill, due to the worry she created by spitefully making a malicious accusation to social services. This is a bill I can’t afford to pay as an unpaid carer. It is on a payment schedule…until 2038.
Next, there was nurse 
A slimy two-faced git who was drafted in by the said professional who disregards his own duty of care towards my son. This nurse did a phone assessment with paid carers and I was asked to have him visit to discuss ‘the assessment’ along with the elusive dogmatic professional and then I found out the visit was used as a medication review, which in my eyes did not take place at all on that day.
Of course, this nurse upheld the professional and backed up what he said.
Then this particular nurse was found to be invited many months later (even though he didn’t know my son and hadn’t visited) to a multi-disciplinary meeting, to decide on my son’s continuing health care. This nurse left the meeting at a crucial stage and then backed up the C.H.C assessor whose intentions were to refuse full Continuing Health Care for my son.
I was then expected to manage to work with this person and expected to have them visit my home. After the aftermath of what they’d already done, I mean. Who in their right mind would accept that to be okay?
Almost lastly, there is nurse C) This one was given ‘the job’ of arranging a 117 aftercare meeting which she did on a withheld phone number, on the phone. I attended to find the said nurse (who I was told was allocated, but had never visited my son) was out ‘on a visit’ and the other professional who has been persistently ignoring me for years was in clinic at a totally different establishment.
I had not been told anything had been cancelled as this nurse had not informed me, and when I had tried to get some form of communication about the said meeting before it didn’t actually take place and I was ignored by the other one involved in it.
Since then 2 months ago, I have received zero communication by nurse C, and I now recall she was the obstruction artist who has been on duty the day my son was sent home after his last stay at a health facility. The said nurse left me for many hours without support…even turning the duty phone off, at the time. She caused distress and risk to me by acting in that way and that can’t be forgotten.
Why exactly would I even wish to give such an ignorant professional my trust in the care of my son as she is too rude and above herself to even explain the mess up she caused and waste of money and time for me getting there?
And in between all this was the attempted allocation of the exact nurse who was formally involved in my son’s detention on the pretence of it ‘being for respite’. Not only was my son contained and deprived of his liberty and assaulted via many illegal restraint technics which aren’t taught…but he also endured this for having behaviour associated with Temporal lobe seizures…and he had his freedom taken away for around 17 months. This also included his 21st Birthday.
This all being said, and as the icing on the cake, the Health service was asked to provide copies of files under SAR which they did not do properly and still haven’t.
I care for my son who very often screams and wails for many hours during the day and at night. It can be for many consecutive days and nights. I live in the situation as care was forced to take place at home for cost reasons, many years ago.
Only in the last few years have I asked for additional support and I have been treated appallingly and I have found my son has had clinical services removed…with a demand of ‘a nurse’.
To end this, I have many times offered the service to come in…after 9pm for that idea to be totally rejected. It’s not ideal, but nor is a nursing service. My son should have had access to a specialist epilepsy service, not a mainstream community nurse service which is full of nurses who have absolutely no understanding or proper training in autism…let alone learning disabilities, autism, and seizures.
There are still many issues outstanding with both social services and health services to be yet addressed. Those issues are hampering assistance and someone is still attempting to ignore it. These are services ignoring the duty of care and not just towards my son.