Learning disabled woman challenges lack of incontinence pads Advocate supports woman with a learning disability to successfully challenge decision to stop use of incontinence pads Expand Lynne has complex needs, including a learning disability. She lives in an NHS hospital. Lynne needed to use incontinence pads overnight, but the hospital decided to stop providing them. This meant that Lynne was often left in soiled sheets until morning. This was extremely distressing and embarrassing for Lynne, was affecting her skin and she thought she was being treated in this way as a form of punishment. Lynne's advocate had been trained by BIHR and recognised that this could infringe Lynne's right to be free from degrading treatment (protected by Article 3 in the Human Rights Act). The advocate also saw that Lynne needed support to understand what was happening, in order to protect her autonomy (covered by Article 8 in the Human Rights Act). Lynne's advocate created a short storyboard to talk through the issue with Lynne and explain about her rights. Lynne was pleased someone had understood how she felt and agreed that the advocate could discuss her rights with the hospital. As a result, the hospital re-instated the use of incontinence pads so that Lynne would not face hours of discomfort and embarrassment each night. Example from BIHR’s protect Care and Support: A Human Rights Approach to Advocacy
Woman challenges lack of treatment as degrading Woman uses human rights to get treatment for severe tinnitus which was causing serious mental health issues Expand Moira was in her 40s and had suffered with severe tinnitus and deafness in one ear for three years. This caused an incessant loud noise in her head which was having a significant impact on her mental health. Moira’s consultant thought that she could benefit from a cochlear implant and was willing to perform the operation but the Clinical Commissioning Group (CCG) repeatedly refused to fund it. Moira and her family were severely depressed by the situation. Moira felt that her life was no longer worth living, and at one stage attempted to take her own life. Moira was in touch with an advocate who had attended one of our project learning events. This advocate supported her to go back to her GP to explain the impact the CCG’s decision was having on her. Armed with some research that showed how someone in a similar situation had benefitted from a cochlear implant, Moira used her right to be free from inhuman and degrading treatment (protected by Article 3 of the Human Rights Act) and told her GP that she thought it would be inhumane to leave her suffering when treatment was available. The GP eventually managed to secure funding for her treatment from an alternative source. Moira and her family were overjoyed. Moira felt that she was getting her life back and her children were getting their mum back. Example from BIHR’s protect Care and Support: A Human Rights Approach to Advocacy This story is also shared in BIHR's booklet Mental Health, Mental Capacity: Raising a Human Rights Issue
Couple in mental health hospital challenge ban on relationship A couple detained in a mental health hospital use human rights to ensure they can continue their relationship, and hospital re-write their policy Expand Christine is detained in a mental health hospital and is in a relationship with another patient, Anthony. Christine asks her doctor, Simone, if she can meet with Anthony inside the hospital. Simone refuses, saying that she thinks the risks are too high as it might be detrimental to their wellbeing. The hospital’s policy is based on risk management and prohibits any sexual activity. Christine is upset and feels it is detrimental to her well-being not to see Anthony. She has an Independent Mental Health Advocate, Daniel, who had been trained by BIHR. Daniel speaks to Simone, explaining that the decision is interfering with the couple’s right to private and family life (Article 8 in the Human Rights Act). Whilst this right could be restricted by the hospital to protect their wellbeing, the response still needs to be proportionate. Daniel points out that the decision to refuse all meetings seems disproportionate and that the relationship could improve Christine’s well-being. Simone dismisses this and refers back to the hospital’s policy. Daniel meets the Clinical Service Manager to discuss the couple’s human rights. As a result the hospital agree to reassess their decision. Balancing the risk to the couple’s well-being and their right to private and family life, it is agreed that the couple can meet on the ward. They can have physical contact during the meetings and this could increase over time (working towards joint leave away from the hospital). The hospital also changed its policy on relationships. It now refers to balancing human rights and risk. Example from BIHR’s protect Care and Support: A Human Rights Approach to Advocacy This story is also shared in BIHR's booklet Mental Health, Mental Capacity: Raising a Human Rights Issue
Family carer and her parents supported Family carer and her older parents suppported to get the care they all need Expand Barbara and Jerry are married and in their late 70s. They live together but in separate living quarters, and haven't lived as man and wife for 30 years. They both have physical health issues and difficulties moving around. Their daughter, Susan, lives elsewhere but provides all of their care. A Carer Support Worker, Lemar, visits Barbara and Jerry's home to conduct a Carers Assessment. Susan was is present for the meeting. During the meeting it becomes clear to Lemar that Barbara, Jerry and Susan disagree about their care and that Susan's strong views were causing conflict between her and her parents and the relationship was breaking down. Lemar is concerned that Susan is speaking on behalf of her parents and that she was making decisions for them. Lemar has attended training on human rights from the British Institute of Human Rights and recognises that this is potentially interfering with Barbara and Jerry's autonomy (protected by Article 8 in the Human Rights Act). Lemar gently asks Susan to step out of the meeting so that he can speak to her parents separately. Lemar speaks to Barbara and Jerry, explaining that they have a right to autonomy; to make their own decisions and have their views and wishes respected. Lemar also explains that they can have separate carers assessments, but they decided to proceed with a joint assessment. Jerry's health is deteriorating and he expresses a wish to move into a residential setting so that he can spend his last days comfortably. Barbara wishes to stay at home and tells Lemar that Susan wants both parents to stay at home so that she can continue to care for them. In the past, Susan has called Barbara’s GP if she’s not happy with the decisions her mother makes. The GP had previously assessed Barbara as having capacity and encouraged Susan to respect her mother’s decisions. It becomes clear to Lemar that both parents aren't speaking up for themselves because of a fear of Susan's views and her making decisions for them. Both Barbara and Jerry say this is causing them a great deal of stress and anxiety and they can't see a way forward. After the assessments, Lemar gets permission from Barbara and Jerry to speak to Susan privately to present their views and wishes to her. Lemar explains to Susan that her parents have a right to autonomy and to have their views heard and make their own choices. Susan accepts that she needs to hear and respect their views. It becomes clear to Lemar that Susan is struggling to cope as the primary carer of both her parents and needs some support herself. This is impacting on Susan's personal relationships and her relationship with her parents. Lemar speaks to Susan about her rights as a carer and its agreed that all of them will meet together to discuss how to move forward. The family openly discuss the situation with Lemar present and all agreed to support each other. Barbara and Jerry decide to trial having paid carers visit them at home and to continue to live together as they realised that they would find it hard to live apart. Lemar makes a referral to have an assessment of need by the local authority for Barbara and Jerry and a Carers Assessment for Susan so that they can receive the support they need. Example from BIHR’s protect Care and Support: A Human Rights Approach to Advocacy Watch a short video about this story here. This story is also shared in BIHR's booklet Mental Health, Mental Capacity: Raising a Human Rights Issue
Young woman in mental health hospital moved closer to family A young woman with mental health issues uses her right to family life to get moved to a hosptial closer to her family Expand Nina, a young woman with mental health issues, had been living in an adolescent unit close to her family home where her mum, grandmother and two younger brothers lived. When Nina turned 18 she was moved to an age appropriate facility, but the only bed available was 200 miles away from home. Now that she lives so far away from home, Nina’s mum and grandmother have to take it in turns visiting her, using public transport. It takes them a whole day to make the trip and is very expensive. Nina stays in the new facility for over a year. Her two younger brothers are too young to make the journey so Nina doesn’t see them at all during this time. Nina’s mum has mental health issues too and has to arrange childcare for the young brothers whenever she visits her daughter. Nina is very distressed by losing contact with her younger brothers as they had previously had a very strong relationship and she misses them. Nina begins self-harming, and as the hospital has a rule stating there will be no family visits within 48 hours of self-harm, this leads to even less family access and her mum and grandmother’s visits being cancelled at the last minute. Nina has an Independent Mental Health Advocate, Donald, supporting her. Donald had been trained by the British Institute of Human Rights and recognised that this was a human rights issue. With the consent of Nina, Donald arranges a meeting with the social worker. Donald explains that this is interfering with Nina’s right to respect for family life, protected by Article 8 in the Human Rights Act. The social worker had being trying to get this resolved for months, so was pleased to hear that she might be able to use Nina’s right to family life to get things moving. The social worker and Donald work together to write to Commissioners to challenge Nina’s placement. They explain in the letter that the CCG has a duty to respect Nina’s right to family life, and what impact this was having on Nina and her family which had, by this time, being going on for 18 months. The letter points out that the CCG weren’t doing all they could to protect this right. Within a few days the CCG had sent a different doctor to assess Nina. Within two weeks of the assessment Nina was transferred to a unit closer to home. As it was within 40 miles of her family, it was close enough for her brothers to visit and Nina will be able to have home visits. As a result Nina is much happier. Example from BIHR’s project Care and Support: A Human Rights Approach to Advocacy This example is also shared in BIHR's booklet Mental Health, Mental Capacity: My human rights
Older woman protected from abuse in care home Advocate uses human rights to ensure older woman being abused in care is protected Expand Elsie is in her 70s and has a learning disability and communication difficulties. She is living in an approved care home and her care is funded by the local authority. Elsie has an advocate, Joshua, who has been supporting her to take back control of her finances and open a bank account in her own name. Elsie tells Joshua that the care home was forcing her to go to church, and that she doesn’t want to go. During this visit, Joshua also spots bruises on Elsie’s arms. Joshua had human rights training from BIHR and recognised that this was about Elsie’s right to be free from abuse (protected by Article 3 in the Human Rights Act). Elsie told Joshua she was being abused by the manager/owner of the care home. Joshua raised this with his manager and social services were alerted, as well as the Care Quality Commission. The care home was investigated and the CQC are considering taking enforcement action against the home. The police are also investigating the abuse. Example from BIHR’s project Care and Support: A Human Rights Approach to Advocacy This example is also shared in BIHR's booklet Mental Health, Mental Capacity: My human rights
Woman challenges use of bucket as toilet in hospital Woman uses human rights to successfully challenge using a bucket as a toilet in a mental health hospital Expand Lorraine was detained under the Mental Health Act in hospital. When she was admitted there were no bedrooms available. The hospital were in the process of turning a meeting room into an extra bedroom for patients, and as there were no other beds available at that time in the Trust, Lorraine was admitted into this unfinished room. The meeting room had a window on the door, with no curtain, so staff (and potentially other patients) could see into her room at all times. Unlike the other bedrooms on this ward, there was no bathroom in the room, and Lorraine had continence problems which meant she needed to use the toilet throughout the night. The communal toilet for the ward in the corridor was locked during the night for safety reasons, which meant she would have to call the night staff to take her to the toilet and wait outside. The night staff were not happy about this procedure, so instead gave Lorraine a bucket to use as a toilet in her room. Lorraine was very embarrassed about using the bucket. She found it even more distressing that she had to empty and clean the bucket herself (as she was too embarrassed to continuously ask staff to do so on her behalf), by carrying it to the communal toilet in the corridor in view of staff and patients on the ward. Lorraine had an advocate, Rajesh, supporting her. Rajesh had received training on human rights from BIHR. He recognised this as a human rights issue and raised it at the ward review with the responsible clinician and the primary nurse, using Lorraine’s right to be free from inhuman and degrading treatment (protected by Article 3 in the HRA). It hadn’t occurred to the staff until then that it was a human rights issue at all, but once Rajesh raised it as such, the staff agreed and immediately acted. They moved Lorraine to another room with a toilet (which had since become free) and didn’t use the meeting room as a bedroom again until a toilet had been installed in the room. Rajesh also wrote a letter to the modern matron about the issue, to make sure the concerns raised were on record. Example from BIHR’s project Care and Support: A Human Rights Approach to Advocacy Watch a short video about this story here. This story is also shared in BIHR's booklet Mental Health, Mental Capacity: Raising a Human Rights Issue
Woman with dementia retains relationship with partner in care A woman affected by dementia retains her relationship with her partner whilst living in care Expand Erin is in her late 70s and is afftected by dementia, living in a care home. Her partner, Patrick, visits her regularly in the care home. During a visit Patrick is seen touching Erin in a sexual way. Staff are concerned about this and raise it with the local authority. The local authority start a safeguarding enquiry. The social worker carries out a mental capacity assessment and Erin is assessed as having capacity to decide if she wants to have contact with Patrick (including kissing and hugging) but not sexual contact. Erin is also assessed as not having capacity to take full part in the enquiry because of her advanced dementia. Erin’s friend is keen for the relationship with Patrick to be limited or stopped altogether and is pressing the local authority to restrict his visits. Erin has a Care Act Advocate supporting her through the safeguarding enquiry. The advocate had taken part in training by BIHR and recognised this was engaging Erin’s right to respect for family life, protected by Article 8 in the Human Rights Act. The advocate had seen the positive impact the relationship with Patrick appeared to have on Erin. Representing Erin on this issue on a non-instructed basis, the advocate met with the social worker conducting the enquiry and raised Erin’s right to family life. The social worker agreed that Erin’s right to family life was engaged and took this into account during her enquiry, which concluded that the local authority would not prevent Patrick from visiting Erin and that the care home staff would not intervene if they kiss and hug. Example from BIHR’s project Care and Support: A Human Rights Approach to Advocacy This example is also shared in BIHR's booklet Mental Health, Mental Capacity: My human rights
Woman with learning disability moved to appropriate care setting Local Healthwatch take action to ensure woman with learning disability has her right to liberty respected Expand Gemma is in her late 40s and has a learning disability. She had previously been living with her mum but after her mum passed away, the local authority paid for Gemma to be placed in a local care home. The home was inappropriate for Gemma as it was a home for older people and didn’t provide the kind of support she needed. The care home had a locked door, to prevent people affected by dementia from leaving without the correct support. This meant that Gemma wasn’t able to come and go from the home freely as she had previously been able to do when living with her mum. Gemma was also contributing weekly to funds for financial activities at the home, but was told by staff that she was not allowed to take part in the activities as they were not age appropriate for her. Gemma was very distressed by living in an inappropriate setting, especially as it had happened after her mum died, and by not being able to come and go from the home as she wished. Gemma didn’t want to raise this directly with the care home so she contacted her local Healthwatch about this. Healthwatch staff had attended human rights training by the British Institute of Human Rights and recognised this as a human rights issue. The Healthwatch staff decided to arrange a series of ‘Enter and View’ visits to five local care homes, so as not to identify Gemma directly. They talked to staff and people living in the homes about their human rights and whether they were able to come and go as they like, which is part of their right to liberty (protected by Article 5 in the Human Rights Act). The local Healthwatch wrote a report on each home. Amongst the findings, the report uncovered that Gemma was living in an inappropriate setting. As a result, the local authority now support Gemma to live independently in her own flat where she is much happier. Example from Healthwatch Blackburn with Darwen, a partner on BIHR's project Care and Support: A Human Rights Approach to Advocacy This story is also shared in BIHR's booklet Mental Health, Mental Capacity: Raising a Human Rights Issue
Treatment withheld from man with learning disabilities Advocate challenges GPs refusal to treat physical health issue of man with severe learning disabilities Expand Bryn was 60 years old and lived in supported living. He had severe learning disabilities, epilepsy, was non-communicative and blind. Bryn wasn’t lying down to go to sleep, but was sleeping sitting up in a chair. As this can be an indication of a heart condition, staff at the home called a doctor from the local NHS surgery who came to visit Bryn. Bryn had an Independent Mental Capacity Advocate who was supporting him. The advocate attended a multiple disciplinary meeting to represent Bryn. At this meeting the GP stated that he would not be arranging a heart scan for Bryn as ‘he has a learning disability and no quality of life’. Bryn’s advocate had attended a BIHR learning event on human rights and challenged the doctor’s decision at the meeting. The advocate raised Bryn’s right to life (protected by Article 2 in the Human Rights Act) and his right to be free from discrimination (protected by Article 14 in the Human Rights Act). The advocate asked the doctor if he would arrange a heart scan if anyone else in the room was in this situation, and the GP said yes he would. This led to a change in decision and it was agreed that Bryn would have a heart scan. However, the scan was not arranged and the advocate had to raise this three times with the GP and other professionals before the scan eventually took place. Sadly Bryn passed away as a result of his heart condition before any treatment could take place. Example from Solent Mind, participants in BIHR’s project Care and Support: A Human Rights Approach to Advocacy This example is also shared in BIHR's booklet Mental Health, Mental Capacity: My human rights
Empowering patients about the right to vote Advocacy organisation produces leaflet on right to vote for women detained in mental health hospital Expand Following a session with BIHR about human rights, an advocate at Wish (a user-led charity providing independent advocacy to women with mental health needs) decided to produce a leaflet for women detained in a mental health hospital about their right to take part in an upcoming general election. The advocate produced a leaflet about the rights of the women on the ward (detained under section 3 of the Mental Health Act) to take part in elections, protected by Article 3, Protocol 1 of the Human Rights Act. The hospital staff were supportive of this information being circulated and as a result several of the women decided to register to vote for the general election.
Woman successfully challenges restraint by male staff A woman detained in a mental health hospital who had self-injured used human rights to challenge restraints being applied by male staff Expand Maria Clara was detained in a mental health hospital. She had self-injured and had a major wound on her neck. It had been treated and bandaged but she had attempted to re-open the wound. The staff at the hospital had agreed that the woman needed to be restrained due to the high risk of the wound re-opening. The hospital used restraints to prevent her from re-opening the wound but two male staff applied these restraints. Maria Clara found it very distressing to be restrained by men. Maria Clara told her advocate that she was experiencing flashbacks which she believed were due to the two male staff carrying out the restraints. The advocate spoke to the hospital staff and raised this as a human rights issue. As a result the hospital agreed to only use female members of staff to restrain Maria Clara, to allow her wound to heal. Example from BIHR’s protect Care and Support: A Human Rights Approach to Advocacy
Detained patients empowered about their rights Patients detained in a mental health hospital empowered about their rights in the Code of Practice Expand NSUN (a service user/survivor led organisation) were invited to deliver a learning session for patients on a secure unit, organised by the West London Mental Health NHS Trust. The aim was to inform patients about their rights in the revised Mental Health Code of Practice (April 2015), specifically the new chapters 4-12 on Protecting Patients’ Rights and Autonomy. It became clear that both staff and patients were unaware of rights and patients raised examples of their rights not being respected, such as access to IT communications, lack of appropriate visiting spaces and being told they would lose privileges if they were non-compliant. NSUN produced a short leaflet on the human rights of people using mental health services. The leaflet was designed to empower people using mental health services about what rights they have and how these are outlined in the revised Code of Practice. In addition NSUN organised some training for staff members on human rights, to empower staff members about rights and to try and avoid any unintentional breaches of people’s rights. NSUN are a partner on BIHR’s protect Care and Support: A Human Rights Approach to Advocacy
Local Healthwatch raise human rights concerns with hospital A local Healthwatch raise poor treatment of patient with NHS Trust Expand A man was admitted to hospital unconscious. His family found him left in soiled sheets which they complained to the hospital staff about. They also told the hospital that he had a tooth loose which needed treatment. The dentist visited but told the family that the tooth couldn’t be removed without the patient’s consent, which couldn’t be given as he was unconscious. The tooth came loose and ended up on the man’s lung and he now lives with brain damage. The man’s daughter contacted the local Healthwatch to report their experiences at the hospital and the poor treatment of her father, to try and avoid it happening again. The Chief Executive of the local Healthwatch has monthly meetings with the NHS Trust to discuss any concerns that have been raised by local residents. After training from BIHR, the local Healthwatch staff recognised this as a human rights issue, and will discuss this with the NHS Trust raising about the father’s well-being (Article 8 in the Human Rights Act) and the family’s right to be consulted and listened to about their father’s care and treatment (Article 8 in the Human Rights Act). Example from BIHR’s protect Care and Support: A Human Rights Approach to Advocacy
Respect for right to education in mental health hospital Woman challenges barriers to enrolling on university course Expand Dara is detained in a mental health hospital. She wants to enroll on an Open University course. She begins the enrollment procedure but discovers she needs the hospital staff to provide some information and to confirm that she is able to make the commitments required by the course. Dara asks the hospital staff to do this but they say they are too busy and keep dismissing her requests. Dara tells her independent mental health advocate, Connor, about this. Connor has attended BIHR training on human rights and talks to Dara about her right to education (protected by Article 2, Protocol 1 in the Human Rights Act). At the next ward review Dara and Connor raise the enrollment again and talk to staff about her right to education. As a result the ward staff call the university to complete Dara’s enrollment and the doctor agrees to adjust her leave so that Dara can access a computer at the local library. Example from BIHR’s project Care and Support: A Human Rights Approach to Advocacy
Respecting religious beliefs in mental health hospitals Man detained in mental health hospital challenges lack of respect for religious beliefs Expand Remy is detained in hospital under the Mental Health Act. On arrival he told the hospital staff about his religion which requires him to follow a Ketogenic diet. The hospital tell him they are unable to meet his dietary requirements due to budget constraints. Remy is distressed by this and talks to his mental health advocate, Karina. Karina has attended BIHR training on human rights and recognises that this could be an interference with Remy’s right to freedom of thought, conscience and religion (protected by Article 9 in the Human Rights Act). Karina talks to Remy about this and then arranges a meeting for him with the staff to discuss this. At the meeting Karina talks to the staff about Remy’s right to freedom of religion. Although this is not an absolute right, and can be restricted, the restriction needs to be proportionate. Remy asks if the staff have considered other ways of supporting him to protect this right. After discussing some options, the staff agree that they can facilitate Remy cooking his own meals, which he is happy to do. They also refer Remy to the Occupational Therapist so that they can discuss getting him some help with the costs of the food. Example from BIHR’s project Care and Support: A Human Rights Approach to Advocacy
Using human rights to secure discharge from hospital Woman challenges decision not to discharge her from hospital Expand Yaling had been detained under the Mental Health Act for 4 months. During her detention Yaling had been on leave from the hospital and had taken recreational drugs. When the hospital staff became aware of this they revoked her leave. Towards the end of Yaling’s detention, her mental health and her medication regime were stable. Yaling felt ready to leave the hospital but staff were not discussing discharge arrangements as her leave continued to be revoked due to drug use. Yaling’s mental health advocate had been trained by the British Institute of Human Rights. The advocate spoke to Yaling about her right to autonomy (protected by Article 8 in the Human Rights Act) and to make decisions others might consider unwise, and about her right to liberty (protected by Article 5 in the Human Rights Act). Yaling spoke to the hospital staff about her rights and her concern that her detention under the MHA had become about preventing her taking recreational drugs rather than for treatment for her mental health issue. She also spoke to them about her right to liberty as she no longer fit the criteria for detention under the MHA. The hospital staff reviewed Yaling’s case and, taking into account her human rights, began making plans for discharge. Yaling was discharged a few days later. Example from BIHR’s project Care and Support: A Human Rights Approach to Advocacy
Preventing physical health needs becoming degrading Woman with mental capacity issues supported to prevent degrading treatment in hospital Expand Kalpana has mental capacity issues and is in hospital. Whilst the hospital are able to meet her mental capacity needs, the nursing staff are unable to meet her physical health needs and are trying to arrange for Kalpana to be moved to another hospital. Kalpana is overweight and the nurses do not have the equipment to move her to wash her properly. Kalpana is incontinent and is developing pressure sores. Kalpana is being supported by an Independent Mental Capacity Advocate who agrees with the hospital staff that Kalpana’s physical health needs are outweighing her mental health needs. The hospital staff are in discussions with NHS England to try and find a new placement for Kalpana, but the decision is taking a long time and concern for her health is increasing. At the next meeting with the funding team, Kalpana’s advocate raises this as a human rights issue. The advocate raises her concerns about Kalpana’s physical health, using the right to be free from inhuman and degrading treatment (protected by Article 3 in the Human Rights Act). The funding team at NHS England agreed that Kalpana should be moved, to prevent the situation becoming degrading. Once human rights concerns were raised, the Commissioner took action. Kalpana was moved to a more suitable placement which better met her physical health needs. Example from BIHR's project Care and Support: A Human Rights Approach to Advocacy