Anyone who knows me will confirm that I am not afraid to speak up, firmly but fairly, if something is wrong. With TV programmes and magazines extolling the rights of the consumer, complaining about goods and services is something most people will do without hesitation. When it comes to complaints about issues of health and social care, however, a chilling fear of the malevolent intentions others may have as a result of what you are going to do or say can put you in that most impossible of positions – do you speak up, and if you do, will there be unexpected consequences?
Over the course of my father’s 19 years with vascular dementia there were numerous occasions when things went wrong, particularly in care homes. Small issues like missing clothes, giving the wrong food or drinks, or not showering him enough were easy to tackle with staff who, whilst often overworked, were generally conscientious and wanted to put things right, but much bigger problems proved far more difficult to deal with.
As a loving, caring family, you want the best for your relative, wherever they are and whoever is looking after them. People with advanced dementia cannot speak up for themselves, and whether your battles are with care home management, hospitals, care agencies, PCT’s or social services, it can easily become an all-consuming, personal quest for the care, justice and fairness your loved one deserves.
Generally most official complaints procedures would like you to start and end your complaint with the lowest level manager that they can delegate your issue to. Often, however, this person will not have the authority to overturn decisions or will try and wrap your problems in red tape, with protocols, procedures and lengthy time scales. Going higher up the management structure will often result in more bureaucracy, if indeed you can ever actually speak to and develop an understanding with someone who can make the changes you want.
Complains in health and social care are generally very personal, yet you are often left dealing with people who have no personal feeling for the subject in question and therefore no understanding of where you are coming from. Frustrated and exhausted, do you resort to more public methods to fix the broken part of the system that you are in?
Many people have asked me why I never started D4Dementia sooner – 19 years, they say, is a long time for my father to have had dementia, and sharing those experiences along the way could have helped and supported many others on their own dementia journey at that time. Whilst this is very true, and our story has many positive aspects, starting the work I am doing now when my father was still alive would have also meant publically exposing when things went wrong, a concept that filled me with a genuine fear that my father’s care would suffer.
The care system can be very political, secretive and unnerving, and when dad’s care deteriorated to a point where he was suffering (as I wrote about here), whilst I was tempted to make his case an example to the UK, at the same time I felt the price he may pay would be unbearable. As it was, involving senior management from the care provider, and eventually CQC and other agencies in the months prior to my father’s death, left us ostracised, isolated and the subject of lies and rumours from the home management. Furthermore, given the circumstances in which the pneumonia that killed my father manifested itself, I will now always wonder if he was targeted as a resident with a family that they simply wanted to get rid of.
There is a pervasive fear amongst families of older people who cannot speak up, or indeed amongst the elderly who could speak up themselves but live in fear of doing so, that the lives of the older generation are considered to be worth less than their younger counterparts. Many elderly people often feel very vulnerable, alone and frightened, languishing in hospital beds or in care homes with problems that they would like to voice but fears that their care will suffer if they ‘get someone into trouble’.
Anonymous whistle blowing is great in theory, but often the channels for doing this are unknown or not trusted, and as a result underused. Regulatory bodies that are designed to protect vulnerable people, like CQC, can be unapproachable and unhelpful, and as we all know, sometimes it even takes undercover reporters to expose bad care.
When you put your head above the parapet you should be assured of knowing that you will be listened to and action taken swiftly and fairly. Driving up standards only happens by finding and eradicating instances where people are at risk of harm, abuse or even death. Complaining about bad practices, decisions, poor care or management should be something people feel that they can do freely and in confidence. Sadly many people do not, and if my father was still alive I would not be sharing our experiences with you now, so there is still much to learn and change about the way the UK approaches complaints about the most important issues of all, those of life and death.
Until next time…