May 2007

This is a very difficult blog entry to write without causing offence to people whom I do not wish to offend. This post is not specifically about the way things happen in Ladan’s current care home, it is about the way in which over the last few years, as family members, we have often been accused of wrong-doing without a sound context, and warning that this seems to be, as told to me by other people who are involved in similar environments, endemic to the care profession.

I am not going to include any examples in this revised blog entry, I want to avoid upsetting the people involved in any specific incident, but you will just have to understand that I can give examples from every place that has cared for Ladan.

You would like to think that family members would work hand-in-hand with clinical staff in deciding and providing the best level of care for their loved one. Many care institutions want to offer this and try to offer this, but it is not something that they know how to do. Most people with serious neurological or physical conditions are left by their families for most of the week with just occasional visits. In cases where there is a significant rate of recovery some patients prefer a smaller amount of visiting and so this is not necessarily a bad thing, but this means that clinical teams are not familiar with a situation where the family members have a better picture of the day to day state of a person in their care than anybody else, or where they even want to contribute to the care for their relative. My objective is to get Ladan home as soon as is practical and good for her, most people prefer to leave their relative with a caring team. Carers and medics are not, therefore, very familiar with working along side a family member.

For some reason, as kind, caring, loving and friendly as nurses and care workers can be, they are generally over eager to feel that a family member is doing something wrong, they may hear a sound and guess that it is the sound of the relative doing something they shouldn’t, they may see a sign and assume it is a sign that a family member did something they shouldn’t have done, they may see something they don’t understand and assume it is something quite dangerous.

While there are a small number of people who will ask you about any suspicions they have or point out if there is something not right, it is very common for staff to chat about what they heard or saw and to share their concerns about what it might have been, these concerns, rather than the sound or sight that was actually witnessed, eventually get to somebody in a position of seniority who then decides to talk to the family about it. The family are then presented with an allegation, the senior member of staff will not have had the time to investigate the source of the allegation properly before bringing it to the family and will usually present the allegation as a statement of fact rather than a query. Sometimes the allegation itself is even broadened to be an allegation of general wrong doing in a whole area, based on one related allegation, itself generally false. Almost always, if a family member denies the allegation the denial is treated as dishonesty. If the family member is able to work out where the allegation originated, and point out the true facts, they are again accused of being dishonest.

As I am not including examples, it is important for me to repeat that everything I am writing is an accumulation of our experiences in this environment and that not everything I am saying is relevant to Ladan’s current care home.

There is usually somebody you can find in an establishment who will listen to the facts of a matter, it is not always the case, however, that they will be present when the allegations are being made. Or if too many allegations are being made at once then the opportunity may not exist to get to the bottom of each one in detail.

These instances leave me deeply hurt, insulted, and upset for long periods of time, they make me less relaxed around Ladan, which I do not believe is good for her, it winds up the rest of the family and like wise they start talking in an agitated fashion around Ladan, which is again not good for her. Friends and family tell me to get Ladan out of the place she is in, or to take serious action against them, which are not things I want to do. It makes me feel like there is no point trying to communicate with people who treat us with suspicion, blame and as dishonest. It is hard to discuss these matters with people else-where without them becoming concerned that Ladan is not in safe hands. The reality is that she is, and always has been, in generally safe hands, the staff do care, and have always cared, they just have this endemic process that leads from suspicion to blame and is fundamentally down to people not talking to the family, working as a team and feeling able to ask questions about the sight or sound that makes them suspicious rather than letting it become an allegation for which the family get blamed.

If anybody who has been involved in Ladan’s care is reading this and is upset by it then I apologise for that, this is my personal diary on the Internet, it is for friends and family to know how Ladan and I are. This problem has been a continual frustration for us and I feel it is something that should be shared. I have found all of Ladan’s carers to be wonderful people, some of them have helped us get through hard times as a family and they have looked after Ladan well. I always find it hard to understand how such difficulties of communication arise as to lead to these hurtful accusations from such nice individuals.

When I first wrote this blog entry I referred to a specific incident which had triggered me into writing the article, the person involved in that incident was identifiable to many people whom I was not aware were reading this page and, although I later went on to say that the same person is very good at getting to the facts of a matter after a false allegation has been made, they were upset by this inclusion in my blog. I can understand that and do not want to imply in any way that they are not doing their job well, they are a very good listener and have always made time to listen to our concerns. If ever things feel wrong here, they are the life-line and it is incorrect and improper if they are seen as a main player in the problems I have detailed above because of the examples I used. These matters arise everywhere and the person I referenced is one of those who can be sought to help sort them out, there should be no doubt of that.