Incompetence nearly killed my mum!

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I feel like I have been staring at a blank page for days, trying to process feelings I have locked away in order to stay strong and level headed – now it comes to write them all down I’m struggling – how do you process something that hasn’t happened to myself but to someone you’ve loved unconditionally your whole life. – I feel so much rage and hurt, helplessness, disrespected, fear, discussed, ignored, anxiety even hate. There isn’t an emotion I haven’t felt/feel. With one I just haven’t been able to suppress thought out this whole situation the worst feeling of them all ‘Failure’ the Constant feeling that I’m failing as a daughter to protect my mum from the very people that are meant to care and protect her as they would their own family.

I feel like my life is being held hostage by Caremark – someone please help me!

When you have carers/agencies you’re passing all of your care needs over to them, you’re entrusting your whole life to them. We all know that’s not an easy thing to do, so imagine losing all trust in the care agency.

Apologies don’t make a blind bit of difference anymore from this care agency ‘Caremark’ When I’ve witnessed them constantly continuing to be ableist, full of excuses, disrespectful, character assassination, lied, bullied, avoided the truth and quick to blame others for their lack of management, training and common sense.

Time to speak ‘MY TRUTH’ they nearly stole my mum from us because of their incompetence.

WHY – The level of care Caremark provide or lack thereof is classed as Domiciliary care whereas my mum needs are complex care/nursing care as she needs a cough assist machine and ventilator – domiciliary and complex care are polar opposite here’s why:

Domiciliary care is defined as the range of services put in place to support an individual in their own home. Services may involve routine household tasks within or outside the home, personal care and other associated domestic services necessary to maintain an individual in an acceptable level of health, hygiene, dignity, safety and ease in their home.

Complex care, also known as long-term care or continuing care, is given to patients with significant, continuing healthcare issues such as chronic illness and disabilities These health care issues could include muscular dystrophy, ventilators. Complex care requires the carer to be proficient in an array of specific caring methods, which can be learnt and taught at dedicated training centres. As well as providing complex care, carers should also consider facilitating patients to lead independent, active, and fulfilled lives whenever possible Carers can provide complex care to patients but, as mentioned above, they need to be proficient in specialist care techniques. These could include enteral/PEG feeding, stoma care, gastrostomy feeding, nasopharyngeal suctioning, oral suctioning, bowel management, oxygen therapy and tracheostomy care.

Caremark have made me feel so helpless on numerous occasions because of their openness to neglect and unwillingness to rectify their mistakes let alone admit they have made more than one mistake.

My mum is worth more than your bottom line and lining your pockets!!

There will never be any justification for their confident lack of not giving a sh*t who they send in, I’ve been so angry and broken-hearted so many times I’ve lost count like 6 hours of constantly calling the office and speaking to the manager ‘J’ I shouldn’t have to explain until what felt like I was blue in the face, that if a carer can’t even provide basic care needs they should not be sent. Which became an ongoing theme of leaving my mum with no fluids, medication, food, cold, in pain, no light, no repositioning or ventilator sometimes for hours or days. Yet numerous times Caremark was told of inadequate care.

Many times I have threatened safeguarding and calling the authorities as this wasn’t just neglect it was cruelty. My blood boils at the thought of how anyone knowingly treats another human being with such disregard and neglect, especially knowing this person is unable to move their own limbs and care for themselves. The simple FACT is they had knowingly put my mum in danger on multiple occasions.

Safeguarding have been called more than a hand full of times by different people, even another care agency.

If my brothers care team had not done an emergency step in, when my mum was found barely breathing and slipping in and out of consciousness with the Caremark’s carer doing NOTHING, even after my brother’s team stepped in this carer still didn’t report to Caremark that there was a serious situation – finding out this news broke me into a million pieces the one weekend I thought it was safe to not check-in like I normally do, this CARE agency very nearly stole my mum from myself and my brother because of their negligence sending inadequate and untrained staff. What makes it even worse is they continued to send this carer in the following days after this incident knowing they nearly killed my mum, THAT scared me. Whats even more concerning is that wasn’t the last time they sent this carer.

I’m now so petrified that every time I speak to my mum this will be our last conversation, my last memory, the last time I get to say I love you.

The lack of care from Caremark stems even from their supervisor ‘T’ – ‘this so called’ carer took what seemed great pleasure character assassinating my mum for 45 minutes on the phone trying to convince me that my mum is the issue, that she is rude, abusive and how carers didn’t want to go back. T told me that all they have ever done is be caring and helpful followed with I even scrubbed your mum’s infected toe with a toothbrush. I came off that call inconsolable and so angry how dare T be that disrespectful who on earth do they think they are, no child should ever be put though anything like that, especially when you know it’s all lies. It was at that point I realised Caremark just didn’t want to understand or ever going to understand let along admit or take responsibility for their actions. For the lack of training, language barrier or admit their carers have told them they didn’t want to do complex carer. No, it’s easier for Caremark to push ALL blame on the vulnerable disabled person.

Several occasions I have had to keep my mum company via the phone, one time was nearly 6 1/2 hours long until 3am talking, because we both knew it was going to be a ruff night for her. I cried myself to sleep yet every hour woke up to check my phone just to make sure I hadn’t missed a text or call. I’ve cried myself to sleep most nights or lost sleep in the fear of getting a message or worse a phone call.

Terrifyingly ruff days and nights aren’t the only issue, being told my mum has no care for hours is apparently acceptable to Caremark.

It’s been a constant mentally draining battle with Caremark to try and get adequate care, you would think I was asking for the impossible – If it wasn’t a language barrier it was lack of training or just rude bullying staff. We’ve all watched an undercover Panorama or Ch4 documentary on care agencies that provided home care with family members breaking their hearts watching video footage of their family member being mistreatment. Never did I ever think I would be that Family member I’ve watched hours of heartbreaking video footage – of numerous carers just being rude and bullying one example a carer could be seen repeatedly bullying saying ‘say my name, can you not say my name I can say yours’ with mum begging her to leave and stop or she’ll report her, the carers response was ‘report me, I’ve done nothing wrong!’. My blood has boiled on more than one occasion where complaints are not taken seriously even with evidence. Caremark are quick to report statements sent in by their carers, yet never called to check and see if mum was ok or hear Mums side of the story, is that because they would have to admit they lied on more than one occasion?

My heart sinks, my anxiety kicks in every time the phone rings or a message flashes up on the echo so worried to pick up or listen.

I had to sit back and watch Caremark make idle threats and backhanded comments to pull the care in emails for weeks, knowing that if I react there’s a very high change my actions could be taken out on my mum. It frustrates me there is never any repercussions with care agencies like Caremark. Even after you constantly complain to the people that are meant to be there to help you.

False promises with no action or repercussions.

I’ve been so physically and emotionally drained I’m unable to function some days where my husband and my own pa’s have been so worried about me putting my own health at risk. Having muscular dystrophy myself it hasn’t helped my mental health, but I knew I had to put my mum’s needs before mine. For the first time she needed me, my mum needed me to be strong for her, she had never felt like she could confide in me before now, as much as it is breaking my heart listening to the treatment my mum was having to injure I needed to be strong.

Do they even acknowledge or understand the lasting hurt and damage they have caused my mum, myself, my brother and family.

Your time is up, it’s time to truly hold your hand up and say you FAILED – stop hiding behind your lies and the CCG.

As for me I will continue fighting and supporting my mum because she’s worth more and deserves better than Caremark!

Kisses K

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