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Our Rights in Mind pathway is designed to help staff in mental health services ensure that patients have their human rights respected at key points in their treatment.

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As part of the Patients’ Rights Pathway project, we interviewed Claire – not her real name - to find out more about her time as a patient, and asked her to talk about her experience of human rights on a mental health ward.

A mother talks about her experience of caring for her son, who has a diagnosis of schizophrenia.

 

A forensic patient's experience

19 April 2018

This is the testimony of a forensic patient; how he felt and how he feels about his rights at different stages in his hospital care and treatment.

Admission

My understanding is that when someone is admitted to hospital they have the right to have their property looked after by the local authority for a given period of time. In my case this right was not respected. There was a mistake, the housing authority thought I'd abandoned it, so my flat was emptied of all contents. This was not the fault of the hospital, the mistake was elsewhere, but I was completely gutted.

In my admission to hospital itself, I remember someone told me about my right to appeal my detention, but I don't remember receiving any more information about my rights at that time. I do tend to ask a lot of questions though, and I probably gathered most of my information that way. 

I always appreciate it when the manager of a ward I have just arrived in makes a point of introducing himself or herself to me, and this did happen, more often than not. I think it is good when they do that because then they come across as more approachable and the patient feels that bit more welcome. But I actually think they should go a bit further: I think they should make it explicit, when introducing themselves, that the patient can come to them with anything they are unhappy about, or anything they think is wrong with their care. I think the onus is on them to make themselves as approachable as possible. Obviously patients should always feel they can speak to the nurses about any issues they have, but with the more senior nurses it's a bit different. They are sometimes able to help with issues that others can't (such as nursing conduct) but I think are potentially seen by some to be less approachable, due to their seniority and the fact that their job involves spending a lot of time in offices, on computers.

On the ward 

Rights in Mind talks about restrictions on the ward. There is a level of strictness in forensic units that is not typical in acute wards. We are told it is for the safety of all concerned and to a large extent I accept this to be true. But there has always been a tension between this concern and allowing patients the freedom to live as happily and unhindered as possible. I understand the need for keys and locked doors but when I've moved from hemmed in conditions to a more relaxed conditions, I've noticed an increase in my confidence levels. 

Rights in Mind also talks about a patient's rights to activities for therapy and recreation on the ward. In my experience, forensic units have usually had sufficient numbers of staff to provide therapeutic activities, access to education, and to facilitate Pass. These are essential to alleviate boredom, to give patients a sense of purpose and achievement, and sometimes to rehabilitate or teach us skills. Through my work with the Patients' Council I have learned that in other parts of the hospital, such as acute wards, resources are much more limited. 

The most expensive resource is staff and they are often the most necessary; for getting out for a walk, but also just to talk to. For people who often aren't feeling their best, this is help that is sorely missed on a busy, under-staffed ward.

Involvement

One positive thing has been the extent to which senior nurses have generally been very happy to listen and talk to me about the various issues I've had with life on the ward - about my own care, or how the ward is run. Sometimes the ward manager will have a word with a member of staff, or he'll take on board a point and a certain practice will stop, start, or change, and life for patients will improve in some small way. Even if they don't agree with me, he or she will usually explain why, which I appreciate.

There have been great opportunities to be involved more formally in decision making. In one hospital, a group of patients met twice weekly to work with a small team of staff to make patients' voices heard. The meetings were chaired by an elected patient, and sometimes individual patients would attend meetings that were otherwise solely comprised of staff. This group was instrumental in advancing patients' rights in the hospital, and demonstrated that staff were actively trying to work with patients to improve their lives as far as possible in that environment.

Group advocacy

In my current hospital, which is not just for forensic patients, I am part of a group advocacy project, called The Patients Council, consisting of volunteers who are, or were, patients, and two paid members of staff who are completely independent of the NHS. It helps present patients' views, and fight for their rights at meetings we attend with professionals in the hospital, or with organisations and authorities in the community. 

It is one of our rights, in law, to have access to independent advocacy. I believe all hospitals now provide an independent advocacy service, but many, including the one I may be moving to next, do not provide group advocacy. I think that is bad, because the advocacy work we do here is so beneficial to patients. I find this work very fulfilling - I believe I am quite good at it and I know others value it.

UNCRPD 

A good example of our group advocacy's work on human rights is our campaign to raise awareness of the fact that the United Nations Committee on the Rights of People with Disabilities (UNCRPD) recently stated that it is actually against our human rights for compulsion and force, and even detention, to be used against patients, just because we have a disability (mental illness). It is a very thorny issue, one I struggle with myself. But there's a small, and growing, body of evidence and precedents to show that even people with intractable mental health issues can be successfully treated by alternative methods which don't involve the use of force or, sometimes, even medication. 

Independent advocacy

As well as the group advocacy work that I've discussed, there are of course also advocacy services that offer help to patients on a one-to-one basis. Lots of patients take advantage of their help to deal with their doctor, clinical team, tribunals or whoever else - they are all about helping individual patients have their voices heard. I found them helpful in a variety of situations, such as advising me of the best way to communicate effectively with those in positions of power outwith the hospital. The advocate worker I dealt with was very experienced, and able to give good guidance. There are advocacy services in the community as well, which I think is a good thing, as it's not just people in hospital who need help. 

Whatever the context, I believe that if people's voices are better heard, then they are better able to fight for their rights and, sometimes, the rights of others.

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