Hear my voice | The right diagnosis is vital for the right support

Liane Iles wanted to share her experience of being a carer for her Dad. Liane not only reflects on the care her father received, but also highlights the importance of an accurate diagnosis. She also shares two videos produced with the help of Southend Hospital NHS Trust:

IMG_0691“I cared for my Dad, John Iles, for about two years before he died. He was a dental surgeon, a very intelligent and gentle man. At first he thought he might have Parkinson’s. He was told he had Alzheimer’s. His family were, however, not convinced as his symptoms included Parkinsonian traits like shuffling steps, a stoop, quiet voice, hallucinations and huge fluctuations in his cognition, often from one moment to the next, so we read up on the various dementias, and ascertained my Dad had Lewy Body Dementia (LBD).

The importance of getting the diagnosis right has a vital influence on the types of treatment given. Prescribing an individual who has LBD a certain anti-psychotic could kill them, whereas someone with Alzheimer’s would not react adversely in the same way. I have since set up a charity, the Lewy Body Dementia Iles Association LBDIA, which advises people to do their own investigations and respectfully work with the consultant to ensure patients get the right diagnosis from the off.

Towards the end of Dad’s life he ended up in hospital with inhalation- pneumonia. The staff there didn’t understand how to communicate with someone with dementia, nor did they prompt him for the basic things, like drinking, eating and asking whether he needed help going to the toilet. As a result he ended up on a drip with dehydration, despite us being there sometimes up to 12 hours a day.

The most upsetting experience was when Dad was in hospital and needed to go to the commode. We had been asked not to assist in his care due to Health and Safety and his risk of falling, but no staff were around and didn’t understand the purpose of the call button. Dad was getting quite uncomfortable, so I tried to get the nurses to come over but they were sitting there looking at something on the internet – not work-related. In the end it got so distressing for Dad that I got him up and as soon as I got him up he soiled himself. I talked to the CEO of Southend Hospital. They admitted nursing negligence. The Head of nursing was in tears by the end of the time I had related it all to her.Logo LBDIA

I am still working through my charity and with Southend Hospital to ensure this sad story is never repeated.”

– Liane Iles

You can view the two videos Liane produced with the help of Southend Hospital NHS Trust on YouTube entitled ‘Just John’ and ‘Making a Difference’.