It's not just talk

July 5th, 2016 by Home Group client Mark Ellerby in Features

Home Group client Mark Ellerby explains how talking to link workers helps him live with the everyday aspects associated with schizophrenia.

Going walking with a link worker is an excellent way of exercising. With good conversation the miles just fly by. This is a much more effective way of spending one’s time than sitting in the staff office talking.

I do not see my link worker every day but the others will come to have a knowledge and understanding of every resident’s problems. This is important because one assigned staff member will not always be working at the same project every day.

I try to involve my link worker when I see my Community Psychiatric Nurse (CPN) and at a less frequent event, my psychiatrist. I feel they understand my problems a lot better and gain fresh perspective from bringing them along to meetings. Although project workers are not medically trained I think their views are listened to seriously by doctors and nurses.

Sadly, link workers spend a lot of time doing paper work. I often talk while they are filling out a form or other official administration duties. Sometimes I have to seek them out rather than the other way. They literally have to do two things at once – both talking and writing for example, which a few residents find off putting.

Although they do not give a diagnosis or other medical input, what they do supply are ample amounts of common sense. I talk to my link worker a lot about my delusions. As I try to analyse them to make them seem less overwhelming he can agree with what I am saying or otherwise offer criticism on what I say.

This has helped me greatly and so I think I should offer an example. I think I am responsible for wars and the like. Wars however happen because there are political reasons. As we proceed to look at the world politically I do not feel so bad about it all.

By building on my capacity for ‘insight’ and looking at things logically this makes me feel a lot better. It does not take a CPN to do this just someone whose opinion you trust. This is where the project worker is crucial because all this talking takes up much of my time and medical personal simple cannot give it that amount of attention.

Then there are the other non-symptomatic effects of schizophrenia – the most important of which is maintaining a positive view of life and of yourself. I have got to know my project worker well on a personal level and this gives me all kinds of positive feedback about my life and self.

Confidence is often the first casualty in the battle with schizophrenia. Paranoia can do this or voices criticising your bad points. The main issues I have with confidence getting out and about. It is easy to believe that others are thinking negative thoughts and this triggers my psychoses. This sets my brain and adrenalin racing. Having someone to trust to go with has helped me keep in struggling with this in the past.

I feel that if someone knows me on a personal level then I will not be talked about and criticised. Outside people can form first impressions and may react to the contents of my mind and the delusions that preoccupy me. I feel that if I am thinking about a war somewhere they can detect that and think negative things about me. This is the absurd side of the illness to the lay man but it all seems pretty real to me. Looked at another way this is the fine detail of schizophrenia which I rarely see written down.

Another key role for a link worker is to provide social support and develop people skills for independent living. This proceeds initially through the conversation and especially for me through talking about life experiences. It gives a kind of reference point from which to compare.

Some of my project workers have been highly qualified or else successful in business and as such I have been fortunate to have them.

The nature of the conversation has a down side though. I think the best and most visible example of how much you can come to rely on this sort of support occurs when the staff go home for the weekend. Then the mood of the project changes, the conversation proceeds less easily and the time starts to drag. Boredom set in and people’s mood can drop dramatically.

I think it is interesting to compare sheltered accommodation to hospital in this respect. There, the staff in hospital are much busier and very much less familiar with you as a person. I prefer the project to hospital by far for this reason. Often I feel I can be ill just as well at home as I can be in a hospital setting. I think hospital should have project workers to chat more on the ward.

When you live with a severe mental illness having someone to talk to is also vital not just because it is therapeutic or reassuring but simply because everyone needs social and here I must stress non-parental social contact. There are things you can tell a project worker that you cannot tell your parents. We all, I believe, need friends and family and this is the real nature of ‘social support.’

So there you have it all. There are a variety of ways where simply talking is possibly the best for the patient in all kinds of ways. I know there are psychologists who attempt ‘talking treatments’ which comes pretty close to the mark in many ways. However, for me a psychologist is not required and having more time to talk to a link worker instead seems on the face of it much more valuable resource.