Cumbria County Council

It was only a matter of weeks after my dad went into the care home that I was called to a meeting where it was obvious they wanted to administer antipsychotics to my dad. They said he was agitated and was sometimes rude to staff. It was clear to my partner and I that it was not necessary but when I asked for evidence of this the management shouted over me. It felt like the GP’s relationship with the care home management was too comfortable and it seemed far too easy for the GP to prescribe the strong antipsychotics to my father. I later found out that antipsychotics should never be given to elderly patients with dementia because they are so dangerous for them. However, not only did the GP ignore national prescribing instructions, he didn’t even bother to see dad before he prescribed this dangerous drug, he simply quickly did as the care home wanted when they rung him.

In a matter of weeks dad’s room was also downgraded and he was moved to an awful room with no view, looking out onto a dim alleyway, and it was then clear to me that profit was the main priority. Dad was paying a lot of money to be given poor quality food, to have medical symptoms and his obvious distress ignored and to frequently be left in a depressing dark room. However, there was little I could do except write letters as lockdown was started and I could not move dad despite me working on his home to make the boiler and electrics safe and also spending time trying to find an alternative placement. Dad was frequently unshaven, had food on his clothes, smelled and showed symptoms of pain in his bladder or groin area.

Looking back, since his diagnosis dad had been given lots of medications; several of which did not seem to be necessary and just led to more medications being needed because of unwanted side effects. I learned later that several of his medications contributed to the shortening of his life. They depleted his potassium levels and caused dehydration and UTIs. I desperately wanted to move my dad but he was stuck where he was due to lockdown. I didn’t even get to see him properly for three months, so it was a very stressful and upsetting time.

In June, I expressed my concerns after seeing my father face to face in our only garden visit. He was breathless and very pale. I raised my concerns. A couple of days later, he was still the same. The care home management ignored my concerns and said it was only a dip in my father’s dementia. I felt helpless but had to intervene, so I handed a letter to the GP surgery, asking for the third time that the antipsychotic be stopped. The Practice Manager had to take heed as I said I would hold them accountable and I held Power of Attorney, which is supposed to allow me to make such decisions for my father. It was too little too late.

I had been against the prescription from the outset and could see what was going wrong in the care home but I felt my hands were tied, as I was unable to visit dad due to lockdown and was worried that if I made a bigger fuss that he might be ill-treated. I had made arrangements for dad to either be moved to another home once lockdown was lifted or for him to be move back to his own home but lockdown in care homes dragged on.

I saw my dad again on a Sunday four months after he moved into the care home and I also spoke with him the next day. He was coherent and not in pain, just breathless and a little confused. He asked about when I would have his home safe enough for him to return to, as his gas boiler and electrics needed updating. I was desperate to get dad, who called the care home a prison, home and reassured him the work was being done. I also raised my concerns about dad’s health with the care home staff who initially just downplayed these concerns.

Eventually, when my dad had worsened, the care home staff called a GP and blood samples were taken and it was finally discovered that dad had low potassium levels, something that should have been being monitored as this was an ongoing problem. However, instead of being transferred to hospital and treating the low potassium with a drip as had happened before, the GP said he’d be better left in the care home and told them to give dad bananas and tomato juice. The GP did prescribe potassium replacement tablets but I found out later they were never even given to my father.

The following day, I was briefly ushered in to see my father. Instead of being a given drip or even medication to treat the low potassium, he had been sedated with Lorazepam, a medication that can worsen low potassium and would mask the agitation he was suffering as a result of the low potassium. As a result, he couldn’t even communicate with me properly. I asked to stay with him but the care home refused. It was the first time I had been near my dad in 3 months. The next thing I know, the GP phoned me and told me that dad was dying. This seemed incomprehensible, as he’d been eating and chatting the day before.

I was finally allowed to sit with my father. Even though he was dying, the care home only allowed him to have one visitor and I felt very alone. And it all felt wrong. What effort had been made to save him? Why was he not transferred to hospital where his heart should have been monitored and he could have had the simple potassium drip that had worked so quickly and successfully five months earlier.

I have since looked at all my father’s records and have learned that, despite previous low potassium levels, the GP had never reviewed his medications, several of which can lead to low potassium and even death. The anti-psychotic I had been so concerned about was one of those drugs. I also discovered that my father was actually being illegally imprisoned in the care home against his wishes, as the Deprivation of Liberty Safeguards Authorisation process, necessary to keep him in the care home, had simply never been completed.

However, most shockingly, I have since learned that despite only suffering with easily treated low potassium, instead of being transferred to hospital and being treated, the GP and care home simply started my father on the end-of-life drug Midazolam. I have since learned of huge numbers of other families who’s loved ones lives have been prematurely ended with this drug and I now have a legal case pending.

Despite me having got all the work at his home finally completed, my father never got to go home because he was killed by the drugs that day. This haunts me every day and every day I still cry for my father and all that was done to him.