None payment of agreed direct payments and medication

I urgently need some help, advice, and support regarding this.
I’m sorry it’s long.
Under the cover of COVID and long before, Health has decided to just not bother themselves to pay in my son’s direct payment they agreed, to increase, for 1 carer for night care. They’d agreed in November last year to provide funding and that was confirmed to me in an email from the previous social worker. The situation of Nhs health not paying as promised now leaves my son’s P.A.’s without wages this month and me having liability as a forced employer, under the forced direct payments scheme, social services made me have to agree to, in 2016.

I am an unpaid carer who has been forced to be an employer by social services.

Not only has the direct payment not been paid but all my respite for the whole year has been taken and has covered Health’s already cheapskate part of the delivery of the daycare but not night care they agreed to. It has all been swallowed up now with employing someone for the nights, that health has failed to pay for under 117 aftercare. The best part is, they haven’t made a payment for this agreed night care since November last year. So that is an 8 month period of non-payment.

The whole situation that has been caused is now threatening my son’s complete package of support. I’m hoping this will be sorted out sooner rather than later.

The allocated social worker who has not bothered to get in contact all the way through lockdown was contacted, by myself, today at some considerable difficulty. It isn’t rocket science to sort this out, as health has to be contacted and told to pay their considerable 24 thousand pound shortfall of funding immediately.

Unfortunately, due to being ignored some time ago about being given a contact number for health commissioners, I have been unable to contact them myself, to sort this terrible mess out.

I have contacted the nurse today who says ‘the social worker’ is dealing with it. The social worker, however, says ‘the nurse’ is dealing with this on the health side.

If you ask me neither are willing to deal with it, as if they were, the matter would already have been sorted out.

Meanwhile, the trust that manages all the funding to pay wages, have told me P.A.’s can not be paid in full, this month. This trust has failed to inform me previously, that there has been more money paid out than is going into the account. They have also denied knowing about the night care funding. Even though, I have an email from the previous social worker who says the trust accountancy was told of the payments starting from November last year. The problem is no funding went in, from December 2019 to right now.

They should have let me know and not just let me find out when funding going in, had dried-up. It’s total incompetence via all 3 organisations.

The social worker has even suggested ‘I have to’ cover the nights, myself and alone and unpaid while she ‘looks into it’ and the trust managing the funding has made a demand ‘of separate completed timesheets for holidays etc’, instead of one all-in-one, for each of 3 paid personal assistants for my son. Not only that, but these timesheets have to be completed by hand, every 4 weeks. By me, who is expected to manage day and night care, in addition to covering all paid carer’s sickness, annual leave and absences for whatever reason?

On top of this, I have been told P.A.’s can not work their annual leave, so no chance of me getting away with not having to cover, every single annual leave taken now, for 3 carers.

To add to this situation, the locum consultant expects me to manage a new medication he has chosen for my son. At the same time, I haven’t got correct funding in place for my son’s health needs.

He has advised ARIPIPRAZOLE as below, for my son who has High cholesterol, A heart murmur, seizures, and epilepsy AND diabetes.

Tell your doctor if you have ever had:

liver or kidney disease;
heart disease, high or low blood pressure, heart rhythm problems;
high cholesterol or triglycerides (a type of fat in the blood);
low white blood cell (WBC) counts;
a heart attack or stroke;
seizures or epilepsy;
trouble swallowing;
diabetes (in you or a family member); or
obsessive-compulsive disorder, impulse-control disorder, or addictive behaviors.
Some people have thoughts about suicide while taking A…… Your doctor will need to check your progress at regular visits. Your family or other caregivers should also be alert to changes in your mood or symptoms.

side effects
Get emergency medical help if you have signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have:

severe agitation, distress, or restless feeling;
twitching or uncontrollable movements of your eyes, lips, tongue, face, arms, or legs;
mask-like appearance of the face, trouble swallowing, problems with speech;
seizure (convulsions);
thoughts about suicide or hurting yourself;
severe nervous system reaction–very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors, feeling like you might pass out;
low blood cell counts–fever, chills, sore throat, mouth sores, skin sores, sore throat, cough, trouble breathing, feeling light-headed; or
high blood sugar–increased thirst, increased urination, dry mouth, fruity breath odor.
You may have increased sexual urges, unusual urges to gamble, or other intense urges while taking this medicine. Talk with your doctor if this occurs.

Common side effects may include:

uncontrolled muscle movements, anxiety, feeling restless;
weight gain;
nausea, vomiting, constipation;
increased appetite;
headache, dizziness, drowsiness, feeling tired;
sleep problems (insomnia); or
stuffy nose, sore throat.
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Oral route (Tablet; Tablet, Disintegrating; Solution)

Warning: Increased Mortality In Elderly Patients With Dementia-Related Psychosis And Suicidal Thoughts And Behaviors With this medication. Elderly patients with dementia-related psychosis treated with this medication are at an increased risk of death. A……. is not approved for the treatment of patients with dementia-related psychosis. This medication increased the risk of suicidal thoughts and behavior in children, adolescents, and young adults in short-term studies. These studies did not show an increase in the risk of suicidal thoughts and behavior with this medication use in patients over age 24; there was a reduction in risk with this medication use in patients aged 65 and older. In patients of all ages who are started on this medication therapy, monitor closely for worsening, and for emergence of suicidal thoughts and behaviors. Advise families and caregivers of the need for close observation and communication with the prescriber. The safety and efficacy of a…… have not been established in pediatric patients.

Side effects requiring immediate medical attention
Along with its needed effects, may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur while taking ……….:

More common

Difficulty with speaking
loss of balance control
muscle trembling, jerking, or stiffness
shuffling walk
stiffness of the limbs
twisting movements of the body
uncontrolled movements, especially of the face, neck, and back
Less common

Blurred vision
inability to move the eyes
increased blinking or spasms of the eyelid
pounding in the ears
slow or fast heartbeat
sticking out the tongue
trouble with breathing or swallowing
unusual facial expressions

High fever
high or low blood pressure
increased sweating
lip smacking or puckering
loss of bladder control
muscle spasm or jerking of all extremities
puffing of the cheeks
rapid or worm-like movements of the tongue
severe muscle stiffness
sudden loss of consciousness
uncontrolled chewing movements
uncontrolled movements of the arms and legs
unusually pale skin
Incidence not known

Hives or welts, itching, or skin rash
itching, puffiness, or swelling of the eyelids or around the eyes, face, lips, or tongue
large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
redness of the skin
tightness in the chest
unusual tiredness or weakness
Side effects not requiring immediate medical attention
Some side effects of …… may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects.

Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common

blurred vision
difficulty having a bowel movement
dry mouth
inability to sit still
need to keep moving
runny nose
sore throat
stomach discomfort, upset, or pain
trouble sleeping
weight gain
Less common

Accidental injury
bloating or swelling of the face, arms, hands, lower legs, or feet
body aches or pain
difficulty with moving
dryness or soreness of the throat
increased appetite
increased salivation
joint pain
muscle aching or cramping
muscle pains or stiffness
rapid weight gain
stuffy nose
swollen joints
tender, swollen glands in the neck
tingling of the hands or feet
unusual weight gain or loss
voice changes
I have to ask myself, what sort of freak of a professional would even prescribe this sort of medication to someone with Autism and learning disability, let alone knowing they have diabetes, heart murmur, seizures, and epilepsy.

It’s hard to know this week already, who is the biggest freak of the professionals’ incompetence of the week.

Frankly, I think the award should be shared between all professionals who are involved in this absolutely disgraceful shambles of services. Who are paid professionals, directly supposed to be supportive of my son who’s on a 117 aftercare package and is severely disabled.

And not what it appears to be, by attempting to sabotage his support and his wellbeing.

hello there - I really feel or you and share your frustration. My adult daughter who also relies on PCAs and now needs night care has not been getting it since February. I’ve had to borrow money to pay for two nights a week as this is the only way I can get a night off. I’m also working full-time, otherwise I wouldn’t be able to afford any of this, and it’s only because we’re all working from home that I haven’t had to give up work.

My daughter also has her funding from continuing healthcare and the local authority and there are always trying to fob me off to the other one. They are currently reviewing my daughters care package and I’m praying that they increase her funding to cover the night care.

I think they rely on parents like us who pick up the slack but it’s really unfair and there should be proper funding in place for adults with disabilities to live independently and not force us into the role of unpaid carer with all the stress that brings.

I don’t have any solutions for you, I’m afraid, but wanted to to let you know you are not alone and I really hope you get the situation sorted very soon.
Best wishes

Hiya Loraine, Yes it’s really difficult when they agree to fund and then they just don’t pay it in. I’m sorry to hear you are a victim of the same situation. I’m not surprised though as it seems to be a common practice. I am still trying to get this sorted out. It doesn’t help when they also close ranks and ignore when there’s a problem. I’m just worried about my son’s package and the PA’s not being paid. My son relies on this and I couldn’t manage him without support.