Human Rights in Action: The importance of visitors for residents and patients

Sally is a single mother with an autistic son. Sally’s ex-husband, though not in regular contact with his son, had raised spurious, malicious safeguarding concerns with social services in the past as a way to hurt Sally.

Her son was admitted to a mental health hospital when he was 14 as a result of a mental health crisis.  The admission wasn’t planned and both Sally and her son were quite frightened and upset during the first few days he was in hospital.

When Sally visited her son in hospital, staff observed him sitting close to her on the sofa and cuddling her, seeking reassurance and affection.  This staff member reported to the hospital team that they felt this behaviour was inappropriate for a boy of his age.  The staff member said that they felt Sally and her son had an ‘inappropriate relationship’.

Without sense checking this with Sally, the hospital raised a safeguarding concern and Sally’s visits were curtailed. This had a devastating impact on Sally and her son.  Sally insisted on her right to maintain contact with her child, so visits were allowed but were observed at all times.

It took months for Sally to prove the relationship with her son was in no way ‘unnatural’ and for regular, private visits with her son to be re-instated. 

This is particularly a risk for families who have been involved with Social Services in the past. Families may have been blamed for their child’s behaviour and/or labelled as a “family that’s struggling” – particularly an issue for single parents without good support networks, or families from marginalised groups or low socio-economic status.

Amrita had mental health problems and increasingly struggled following the death of her husband. She was placed in 24-hour supported care and her children were fostered. It was agreed that the children could visit their mother three times each week, but these visits were gradually reduced to one per week on the basis that the authority did not have enough staff to supervise the visits. Both the children and their mother were greatly distressed by this. The mother’s advocate noticed that the local children’s services department was not present during a care programme approach meeting and that the children’s interests were not being properly represented. After attending a BIHR training session, he invoked the children’s right to respect for family life and convinced the mental health team to invite children’s services to the next meeting. The three visits each week were restored as a result. From this point onwards, the manager of the children’s care team personally saw to it that each visit occurred. The mother and her children have remained very close and recently secured funding to enjoy an overseas holiday together.

Caitlin had been admitted to a paediatric ward in general hospital following a suicide attempt. Her Community Mental Health Team had found her a bed on a CAMHS ward, and she was due to be transferred in the morning. Caitlin was having a visit from one of her school friends, but was visibly anxious about the transfer. The ward staff allowed Caitlin’s friend to stay overnight with her in hospital, as they had recliner chairs available, and thought this would ease Caitlin’s anxiety. Caitlin was successfully able to calm down and distract herself with her friend there. 

Jared had mental health problems and was placed in residential care on a short-term basis. During a visit one day, his parents noticed unexplained bruising on his body. They raised the issue with managers at the home but their concerns were dismissed. They were also told that they were no longer permitted to visit their son. After participating in a BIHR training session, the parents approached the care home once again and invoked their son’s right not to be treated in an inhuman and degrading way and their right to respect for family life. As a result, the ban on their visits was revoked and an investigation was conducted into the bruising on their son’s body.

Amira has autism, and had been detained on a CAMHS inpatient ward for 6 months. One of her closest school friends wanted to visit her, however this required a lot of practical planning as her friend was diagnosed with cerebral palsy, and could only visit at a time suitable for her parents to drop her off and pick her up. On the day her friend was due to visit, Amira seemed to be struggling with self harm and had difficulty communicating with staff on the ward. Later in the day, she asked one of the nurses if they knew when her friend was going to arrive. The nurse told her she had cancelled the visit due to Amira’s unsettled behaviour. This made Amira very angry and unsettled, as the visit had been planned for a very long time and she felt that the visit had been cancelled as a form of behavioural punishment, rather than because of any risk to herself or others.

It is recognised that people who are autistic and learning disabled may spend long periods of time in hospital. For some, over 10 years. During this time, they may become disconnected from society and their mental health suffers as a result. This is particularly the case for those patients who don’t have close family visiting them. Some patients may have no friends or family they keep in contact with so they may be completely isolated and subject to severe restrictions on their liberty.

A new pilot programme from the British Institute of Learning Disabilities (BILD), called “Buddies”, facilitates people with lived experience of being in hospital to act as befrienders to patients who are cut off from regular visitors and may be subject to high levels of restrictive practice (e.g. long term segregation).  They provide a weekly 50-minute call from a Buddy to a patient online via Teams. The patient has the chance to develop a trusting relationship with that same person over several weeks. Calls are confidential and safeguarding is ensured by a Buddy Helper who shadows the call without being involved in the conversation.

Patients have reflected they find the Buddies service invaluable for a number of reasons:

• the unconditional positive from the Buddy makes the patient feel ‘seen’, valued and understood;
• the human connection with someone who isn’t a member of staff or professional or part of their treatment – an interaction with a person who doesn’t judge them or have power over them;
• it gives the patient a reason to get up in the morning and they look forward to their session throughout the week; and
• they gain confidence in their social skills and feel more confident when thinking about life after hospital.

BIHR has a long-standing relationship supporting Mersey Care NHS Trust to put human rights at the heart of its mental health and learning disability services. The Trust recognised that it was difficult for children to visit their relatives in secure mental health settings. Children were finding the ward environment unwelcoming, chaotic and frightening, and this was affecting their rights to family life as well as the mental well-being protected by private life. The Trust, supported by a local youth organisation, worked directly with the young people to address this issue and ensure human rights were being respected. This resulted in children being involved in designing specialised visiting areas for families with children. Children told them that it was important that the rooms were away from the ward environment, comfortable and ‘home like’, and contained toys and things to play with. Young people were involved in the design and décor of these rooms and invited to ‘inspect’ the quality of the family rooms provided by the Trust, before awarding the ‘Jelly Baby’ kite mark to ensure they were meeting the standards set out by young people. As Cait, a young person involved in the project said: “You need to have privacy, and going on those wards is pretty scary, you need time together, and just getting a little space away can make all the difference when so much is happening. You know your mum is ill but she is still your mum and just being with her really helped me and her too”.

Edna is 83 and lives in residential care; her daughter Emily visits most days after work. Following a Covid-19 outbreak, the home put a no visiting policy in place and Emily was unable to visit for over a month, leaving Edna lonely and isolated. Emily used BIHR’s resources to advocate for her and her mum’s right to private and family life, including protection of their wellbeing. The care home manager agreed that a blanket ban on visiting was not proportionate and staff worked to put into place less restrictive measures, including PPE provision for visitors, a gazebo in the garden and video calls. Emily was able to visit in the garden once a week. The care home were therefore able to balance Edna and Emily’s rights with the rights of other residents and the need to keep everyone safe, coming up with proportionate solutions.

Robert was 79 and living with dementia when he had a fall at home. He was taken to hospital but his wife, Muriel, was not allowed to go in the ambulance with him. Robert stayed in intensive care for 12 weeks, but Muriel was not allowed to visit him. After leaving hospital, Robert was discharged to a residential care home which was then locked down because of a positive Covid test so Muriel again could not visit. For four months after Muriel watched Robert leave in an ambulance, they had no contact; Robert was too distressed to talk on the phone, and his mental and physical health deteriorated drastically. The thought that she might not get to say goodbye kept Muriel awake at night.

A support group that has worked with BIHR advised that the severe impact this was having on both Muriel and Robert risked breaching the right to be free from inhuman or degrading treatment. Muriel wrote to the care home explaining this and pointing out their legal duty to protect Robert and Muriel’s rights. The care home then arranged for Muriel to be provided with full PPE so that she could visit Robert regularly and ensured that she was vaccinated together with staff so that she could spend time with Robert as he neared the end of his life.

During a BIHR workshop, a staff member working in a children’s and young people’s mental health unit said that when people were admitted, their phones were taken away and they were given basic phones with no internet access. Another staff member shared that they used to have the same policy in their unit but during the Covid-19 lockdown allowed young people to keep their smartphones so they could make regular video calls. Young people having their phones didn’t cause any issues on the unit and this made the staff realise that taking away smartphones was not proportionate. This made the first staff member decide to reconsider her unit’s policy.

Staff from a children and young people’s mental health service underwent training with BIHR and realised their blanket policy of taking away young people’s phones on arrival was not proportionate as it had not been individually risk assessed. . They instead worked with the young people to come up with “contracts” setting out rules for using phones and consequences for breaking them.

Emmett had been admitted to a general hospital paediatric ward after having experienced a mental health crisis. During his one-month stay in general hospital, he had begun working with a new intensive community support team. However, they felt that Emmett’s risk could not be managed in the community, and he needed to be admitted to a CAMHS psychiatric ward. Throughout his admission, Emmett’s key workers from the community team would visit the ward twice a week. For the first month, Emmett refused to see his key workers as he was angry and blamed them for his admission. Nevertheless, they continued to visit at least once a week. Eventually, Emmett agreed to see them, and throughout his eight-month admission managed to develop and strong, trusting therapeutic relationship with them. Emmett was discharged after having turned 18, and was due to begin working with the adult outpatient team. However, he had several weeks of sessions with his CAMHS key workers. These sessions proved significant in helping Emmett readjust to life outside of hospital and would not have been able to take place if Emmett’s key workers were not allowed to visit after Emmett had refused to see them.

In this case, if the provider/ward staff had restricted the visiting rights of Emmett’s key workers after he initially did not want to see them, there would not have been the opportunity for Emmett to develop a strong therapeutic relationship with them. This would mean he would have had less support post-discharge, which increases the chances of readmission (E.Owusu et al., 2022).