Observation Levels: Our Perspective

Health improvement Scotland. Patient Safety Program. IOP steering group.

GLASGOW

OBSERVATION LEVELS: THE PERSPECTIVE OF PEOPLE WITH LIVED EXPERIENCE AND THEIR FRIENDS AND RELATIVES

I am going to spend a brief fifteen minutes talking about work we have been doing with HIS on observation levels and the views of people with lived experience and their friends and relatives about this.

First of all some background.

I work with the Mental Welfare Commission as their Participation and Engagement Officer with Lived Experience and have done so for about a year and half, I also work with HUG (action for mental health) as their special advisor and used to be the manager there.

About six months ago I had a wee bit of free time at work and noticed an e.mail from Samantha asking for people to pass on their experiences of being on different levels of observation in hospital.

This is a subject dear to my heart, even though it is some time since I was last in hospital. Each time I get sectioned I end up on constant or special obs, sometimes I am not sure which of these I am on as practice does not always seem to meet the definitions I read about.

Anyway I happily wrote down wee snippets about the embarrassment of going to the toilet in front of strangers, the yearning you can have for darkness when the light in your room has been on for 24 hours a day for the last seven weeks and the desire you can have just to touch to grass, the trees, to feel the rain or the wind; all those things which I am sure you are all familiar with. I also wrote that I felt constant obs had kept me alive and that sometimes it seems like some sort of complicated dance we lead with unwritten rules of behaviour that may or may not benefit us.

I sent it all away and not long after heard back from Samantha and then met up to discuss where you had got with the new policy.

After meeting up we thought it would be a good idea to try to meet people with lived experience at their own group meetings as that tends to be a good way to have open conversations and to attract people to talk to us.

We drew up a small list of basic questions which are were designed to encourage discussion about peoples current experiences of Obs and how to improve it and then we heard from HIS about their thinking so far on the subject and had further debate about what we think of this thinking.

We have so far only met 20 people in meetings in Edinburgh, Arbroath and West Lothian involving people with lived experience, carers and family members and advocacy workers. A few people have experience of special obs and constant obs but this has not tended to be very recently though the discussion and the experiences have all still felt relevant. We have further meetings planned for Glasgow, Lochaber and Dumfries which we hope will add to the picture that we are developing of peoples’ opinions and ideas.

In two of the groups we visited people said that they were very pleased that they had had a chance to discuss this subject and that they felt the voice of people with lived experience and their friends and relatives on subjects such as this was very important and that being able to express opinions was very satisfying. In the other group there was some comment that patients did not tend to see the subject of observation levels as being particularly important with some queries as to whether this was a debate stemming from the views of staff rather than people with lived experience and some comment that people were far more interested in being able to get out for a cigarette rather than developing the sort of relationship that might make them interested in engaging in care planning.

Now for the views of people about obs.

Some people who had been on obs were keen to point out that it was very necessary as they needed it to keep safe and secure from their own desire to harm themselves. They also said that the very act of observation could create feelings of safety and lead to conversations and relationships which were instrumental in their recovery.

However on the flip side some people said that it felt intrusive, that they didn’t like being watched and that when they were on obs it was hard to speak to other patients, sometimes admittedly because they were too ill and sometimes because other patients felt awkward talking to them in front of staff members. There was also some consternation that the aim of creating safety was sometimes cancelled out by the noise and distress of fellow patients who were nearby and in one meeting a worry that although, at the time of constant obs, people were kept safe that they felt very unsafe when taken off of obs and that this action may in itself precipitate self harm and suicide attempts.

One person was extremely angry at the fact that he had been detained and did not acknowledge the authority of psychiatry in any way and by extension appeared not to accept that observation levels could have any possible positive role in his life.

When we came to discuss the ways in which observations could be improved we found people very quickly moved onto a discussion of the whole ward environment and the feeling that it could only be seen in that context and sometimes in the context of the wider community.

An overwhelming feeling was that we need to remove the them and us atmosphere that people feel is prevalent on mental health settings, people want staff to do things with people with care and compassion which would involve a dismantling of some of the professional barriers that many staff see as essential to their own professionalism, they want staff to connect as fellow humans with an investment in a shared humanity.

Sadly they felt that although there were wonderful staff who came into the profession as a vocation and gave huge amounts to patients they also felt that many staff were playing lip service to the role they needed to have with patients in distress and by doing so were causing harm to patients.

People had a number of comments on this, first of all they wanted staff appraisal and training to cater for this side of their conduct with patients, secondly they felt that for many staff the pressure of work and the lack of time and staff to carry out their role in a humane way was one of the reasons that they could not do so and was a symptom of austerity and the culture of the NHS. Lastly they felt that for staff to develop relationships with patients and to see them in positive ways that they also needed assistance with their own mental health which could involve their own conditions of and ways of working.

People felt that it would be good to have descriptions of the staff and who they were as people available on the ward and that not only should staff be finding out the interests skills and hobbies and background of patients but they should be matching staff with similar interests to patients and recognising that certain staff will get on well with some people and not others and that this needs responded to sensitively.

People wanted staff to be aware of the stereotypes that they can build up about certain patients, the wanted them to clearly demonstrate compassion and interest in the people they were looking after and to value them. They wanted them to be aware of body language and to see beyond the idea of patient to people who may have a rich and vibrant and talented life outside of hospital that needs recognised responded to and encouraged.

People wanted there to be a sense of community and belonging, for instance that there could be shared meals and quiz nights and activities that made patients want to bond with each other as well as staff.

In keeping with the idea of breaking down barriers of ‘them and us’ there were a number of suggestions, one of which was to acknowledge that patients have detailed understanding of how each other is managing and could usefully help fellow patients access help and raise concerns about safety with staff, this could also be enhanced by the increased role of peer workers and by access to advocacy and advance statements that would help staff gain a clearer idea of the needs and wishes of patients.

Some carers were keen to say that hospital represents a safe haven that is essential when their loved ones are very ill and can no longer cope at home, it provides safety for their loved ones but also relief and comfort to the carers. Many people said that friends and relatives and other people in the community often have a detailed and insightful understanding of their friends and relatives. They felt that staff in hospital could usefully access this knowledge which would all serve to increase the ability of staff to develop positive relationships. Despite this some carers felt excluded and some were very doubtful about hospital as a safe place as they knew people who had died in hospital when they were patients. Some people said that carers may approach their relatives stay in hospital with suspicion and anxiety and many preconceptions about what a hospital is like and that it is necessary for staff to reach out to them and demonstrate that hospital can be a positive and helpful experience.

When thinking about trying to change the atmosphere in hospital so that observations could be carried out in a better way people had a number of suggestions to make, first of all, although there need to be ways of keeping certain patients in view all the time which involves the design of the ward there is also a need to create wards that are warm, friendly welcoming environments, where staff are not hidden by uniforms and where there is colour and light. To create an environment like this, maybe by drawing on the experience of Maggies centres patients would feel less alienated and more likely to be at ease on the ward.

By the same token people said that there should be things to do, and that these should cater to the wide range of people that come onto the ward, so painting stained glass may have a function but so does football and badminton and poetry and art work and creative writing. In addition people said that it would be good for OT to be available throughout the week, that it does not make sense to provide this Monday to Friday when people are resident all week.

On the same theme people suggested that connections with the community should be encouraged both for people to get out into the grounds or the town but also for community organisations to be encouraged to make connections with the hospital.

Many people feel worthless when in hospital and can struggle to communicate or feel good about themselves and yet there may be simple things that could make a difference such as bringing pets onto the ward that people can stroke and look after.

There was also discussion about risk, are hospitals too risk averse? Are patients also risk averse and should they take on more responsibility themselves?

When we discussed the proposals that are being made I hope you can see that the initial discussion with people shows that they would also like to see many of the themes you are also suggesting should happen in hospital. Key to this is a sense of equality and common purpose and humanity, a culture where people no longer see hospital as a sign of punishment and instead see it as a place of recovery and safety, a place where laughter can occur. When this happens then patients will more than likely be able to accept enhance levels of care and to want to engage with the nurses who are trying to care for them.

However people did not unanimously think these plans were achievable, they felt it would need widespread culture change, it would need investment in staff and proper resourcing for mental health both in and out of hospital. We would need to accept that not all wards would respond positively to the proposed changes and may in fact become less safe. Some people felt that acute wards have such a high turn over and are so intense that the ideal of building relationships, activity, community and belonging is unlikely to be possible and therefore the bed rock that would allow observation practice to change would be uncertain.

However, despite these reservations, many people felt that the ideas that they heard could be a breath of fresh air to the experience people have in hospital and mean that peoples experience of observation becomes a more positive and liberating experience.

I’ll finish with a quote from one of the carers.

‘He made a cardboard cut out of himself and put it on the chair to show he didn’t feel listened to. One young nurse came along and said ‘I will help him get to the meeting’ He gave him a cup of tea and toast and was very positive and my son went into his first meeting in years because someone took an interest in him and gave him some warmth and courage to go to the meeting and the knowledge that it was his meeting.’

https://www.mwcscot.org.uk/ for more information