by
Maine » Tue Jan 28, 2020 1:56 am
This is my story on this subject and CHC. Been trying to sort it out since 2017 and the Council had disallowed any complaint about it. Health have done the same.
.EXPLANATORY MEMORANDUM TO THE CARE AND SUPPORT (DIRECT PAYMENTS) REGULATIONS 2014 2014 No. 2871
7.4. The 2009 regulations provide that direct payments cannot be used to pay for care from close family members living in the same household, unless the local authority determines this is necessary to meet needs.
This instrument retains this provision, but introduces a related provision to allow a direct payments to be used to pay a close family member living in the same household for administration and management support, or services for the purpose of enabling the person to whom direct payments are made to comply with their legal obligations, such as duties owed to an employee (if they employ, for example a personal assistant), or to monitor their receipt and expenditure of the direct payments. Again, this is only allowed if the local authority considers it is necessary to pay a close family member to provide such services. This change is intended to allow local authorities to make managing direct payments less onerous by allowing a nominal payment to be paid to a family carer, similar to the way direct payment holders can pay agencies to manage aspects of the payment on their behalf. This can be helpful where a person may have multiple, complex needs and may have several different care workers to arrange and manage.
Above is from The Care Act. and that is an Act of Law that has been decided, so therefore it is a law of the land named The Care Act. It is what the Council and Nhs should adhere to.
The Council via Social services adult team for complex needs have totally refused to acknowledge the wording of the Care Act regarding direct payments in my son’s case. They have ignored exceptional circumstances and also repeatedly quoted ‘there is no legislation in place’ that says they can look into allowing carers to be paid for care the Authority is offering via direct payments. It is difficult to get paid carers to care for people with complex needs, especially adults.
The Council also insists on not paying any additional amounts for night care and refuses to allow more than £9.00 an hour, which makes it increasingly difficult to able to hire staff who are willing to give up their whole night up to care. More especially is the case where the person is requiring numerous and continuous care throughout the night. It also makes it impossible to find an agency to do it as they charge more than double what the Council allocates as a direct payment.
Agencies also charge more than £9.00 for an hourly day rate, so the direct payment is not at all flexible. Even less flexible if the care is calculated via direct payments, and is in place for 117 aftercare.
117 aftercare is what professionals determine is necessary for care, as a result of discharge from a hospital after Section 3 of the Mental Health Act. has been applied, to a long hospital stay.
The flexibility for direct payments and finding staff for complex cases is not in place in order to easily gain consistency of staff, as rarely do staff stay long when the amount of pay is £9.00 an hour. Especially if the care has to be provided constantly for multiple needs and for all aspects of care for someone like my son who needs constant 24 hr care.
That care consists of multiple tasks that are continuous.
The other aspect of this, in my son’s case, is carer’s having to deal with complex partial seizures which are also known as Temporal lobe epilepsy.
Apparently, complex partial seizures is the new term for Temporal lobe epilepsy, so I’m told. I’m not so sure these aren’t 2 simular but separate terms used mainly for convenience reasons. I do know that an M.R.I. scan, dated 2004, indicated T.L.E. in my son’s case.
Temporal lobe epilepsy (TLE) is a chronic disorder of the nervous system characterized by recurrent, unprovoked focal seizures that originate in the temporal lobe of the brain and last about one or two minutes. TLE is the most common form of epilepsy with focal seizures.[1] A focal seizure in the temporal lobe may spread to other areas in the brain when it may become a focal to bilateral seizure.
Complex partial seizures.
A Complex partial seizure is a seizure that is associated with unilateral cerebral hemisphere involvement and causes impairment of awareness or responsiveness, i.e. alteration of consciousness.
Presentation
Complex partial seizures are often preceded by an aura.The seizure aura is a focal aware seizure. The aura may manifest itself as a feeling of déjà vu, jamais vu, fear, euphoria or depersonalization.The aura might also occur as a visual disturbance, such as tunnel vision or a change in the perceived size of objects.[14] Once consciousness is impaired, the person may display automatisms, such as lip smacking, chewing or swallowing.[13] There may also be loss of memory (amnesia) surrounding the seizural event.[12] The person may still be able to perform routine tasks such as walking, although such movements are not purposeful or planned. Witnesses may not recognize that anything is wrong. The person may or may not even realize that they experienced a seizure.
Complex partial seizures might arise from any lobe of the brain.[12] They most commonly arise from the mesial temporal lobe, particularly the amygdala, hippocampus, and neocortical regions.[15] A common associated brain abnormality is mesial temporal sclerosis.[13] Mesial temporal sclerosis is a specific pattern of hippocampal neuronal loss accompanied by hippocampal gliosis and atrophy.[16] Complex partial seizures occur when excessive and synchronous electrical brain activity causes the impaired awareness and responsiveness.[17] The abnormal electrical activity might spread to the rest of the brain and cause a focal to bilateral seizure or a generalized tonic–clonic seizure.[18] The newer classification of 2017 groups only focal and generalized seizures, and generalized seizures are those that involve both sides of the brain from the onset.[6][5]
Extracts from Wikipedia above.
In my son’s case, there is a ‘probably’ included, which really doesn’t help the actual diagnosis. Especially when attempting to put my case forward, for exceptional care consideration to the Council (and to health) who also ignore. The whole situation of ‘probably’ has caused major loopholes for the confusion card to be played, by the Council’s social services department and it remains as only recently they quoted, that my son’s seizures and not part of his epilepsy. So much so, that an Ombudsman has also quoted this. Of course, this Ombudsman can try and back-track and say her ‘fact-finding’ is on the basis of the Councils say so. However, I have brought the matter up to her as not being a factually correct statement concerning my son and one she ought to remove.
I alerted this Ombudsman to this matter before she quoted it in a so-called final decision.
I also asked the clinician for his advice on this quote and he was deliberately unhelpful after knowing it had been used by the Council and in the manner it has been used. He even went so far as saying social services have their own definition for assessment. The thing is my son’s health and care needs are currently split by both and are under what is called Joint solutions.
Defining a joint package of health and social care
A joint package of health and social care is an arrangement between the Local Authority and the local Clinical Commissioning Group (CCG) to:
Work together to arrange, manage and review a person’s support and services; and
Share the cost of those services; when
A person has complex health needs; but
Does not meet the threshold for NHS Continuing Healthcare funding.
Of course, that is another issue. My son does meet the threshold for NHS Continuing Healthcare but it seems once a Continuing Healthcare NURSE assessor (from Nhs) is allocated on 117 cases, then there is a refusal to allow full continuing healthcare and regardless of if someone like my son actually does meet the priority/high threshold. Which he does most certainly.
The nurse assessor makes the ultimate decision on this and the nurse assessor doesn’t even properly know the person they are assessing…Plus they take absolutely no notice whatsoever of anything said by carers like myself who in my case have been caring 34 years…and the majority of my whole adult life.
And then I go back to the main issue of The Council ignoring The Care Act…and making up their own ‘rules’ and inforcing these ‘rules’, by not allowing any determination of exceptional care. Always based on their made-up rules regarding this, that NOBODY living in the same household ever qualifies for being paid to care.
Should this be questioned, all complaints will be disregarded to the point of ‘you’ve been told we do not allow this’ and ultimately someone like me is actually FORCED to accept it. Regardless of actual exceptional care, taking place, in the home.
Care which was actually forced to take place in the household, as all Council facilities and Health couldn’t manage.
