Lived experiences shared with the IHRAR Panel on 23 June 2020. Below you can find all 10 of the lived experiences shared with the IHRAR Panel on 23 June 2020. Ian About Ian: Ian is a carer for his wife and son, who have a range of health and medical needs, including learning disabilities, dementia and autism. He also works with NHS England’s Care, Education and Treatment programme as an expert by experience, is a local champion for the Challenging Behaviour Foundation and volunteer for a number of charities and groups such as The Carers Trust, Healthwatch, Mind Ed, and a national charity called Bringing Us Together What Ian shared with the Panel about his use of the Human Rights Act: Ian shared how he has used the Human Rights Act legal duties to challenge a range of poor practice in health and care in everyday advocacy. He has used the Human Right Act, as a carer and an advocate for others, to: Raise concerns around restraining people in mental health hospitals (right not to be treated in an inhuman and degrading way, Article 3) Raise issues around maintaining family contact (right to private and family life, home and correspondence, Article 8) Make a successful advocacy challenge using the Human Rights Act around blanket policies on sanitary pads in an inpatient setting. Challenge the misapplication of the law and the importance of the HRA in ensuring other laws are applied compatibly with human rights. In Ian’s own words: “Human Rights are so important, to help us ensure that public services do the right thing. My most important plea to the Panel is that the Review in no way reduces people’s human rights under the Human Rights Act. If anything, we should end up with something which is more robust and inclusive.” Sarah About Sarah Sarah is the Equality, Diversity and Human Rights lead for Tees, Esk and Wear Valleys NHS Foundation Trust a large mental health and learning disabilities trust. She has been involved in Human Rights Act work since 2014 when the Trust took part in the Connecting Human Rights to the Frontline project with BIHR and has developed this work into a range of areas. What Sarah shared with the Panel about her use of the Human Rights Act: Sarah works in a large NHS Trust which has been using the Human Rights Act to create positive change for people accessing services. The Trust has been doing specific work around restraint, seclusion and restrictive practices using the framework provided by the HRA for rights-respecting decision making and better outcomes for individuals and their families/loved ones. In Sarah’s own words: "I work in a large Mental Health and Learning disability trust and we provide care for people with LD and severe and enduring mental health issues many of whom have experienced trauma and abuse. As you can imagine many people are have times when they are extremely distressed and may want to take their own lives and we are very aware of the need to ensure that the interventions we use do not retraumatise them. The duty to protect the right to life means that sometimes we will use restrictive practices to keep the person safe and alive so we will use interventions such as restraint and seclusion. The HRA provides us with an objective legal framework for examining those decisions and ensuring that what we are doing and how we are doing it is a lawful, legitimate and proportionate restriction of Articles 8 (psychological and physical integrity) and 5 (liberty) and that we don’t risk breaching people’s Article 3 rights freedom from inhuman and degrading treatment. I think consideration of the proportionality of the intervention is particularly important as it encourages us to explore other less restrictive interventions. So, for example we can restrain someone in a compassionate, caring way by talking to them when they are well about how to do it, talking to them all the way through the restraint and debriefing them afterwards. In short, the Human Rights Act has given us a legal, objective, decision making framework, provided by no other law or policy, to ensure rights are protected and people and staff are safe. We’ve made human rights part of the Trust’s strategic aims. In its current form, the law is powerful and a framework for positive change for people and families accessing Trust services.” Kirsten About Kirsten Kirsten is a single parent of an autistic son who has been held in mental health hospitals and subjected to restrictive practices, including mechanical restraint and long periods in seclusion. Kirsten has secured his discharge, with a bespoke package of care and he now lives happily and independently and is attending college. What Kirsten shared with the Panel about her use of the Human Rights Act: Kirsten’s son experienced inhuman and degrading treatment (Article 3) and limits on private and family life (Article 8). This led her to see the importance of section 3 of the HRA in how the Mental Health Act (MHA) is applied and how decisions made under the MHA can be challenged if they are not compatible with convention rights. Kirsten now sits on a range of national working groups within the NHS and other organisations and holds public bodies to account using the duties in the HRA. In Kirsten’s own words: “Without the HRA, the MHA could trump people’s rights. The HRA means that MHA decisions can be challenged where not right-respecting. As a parent, the HRA gives you the legal framework to challenge decisions. Decisions around where someone is housed, contact with family, being turned away from services leaving a person at risk of harm. The JCHR recently referred to families as” “human rights defenders”. If you take away or dilute the HRA, you take away the tool to challenge for people and their families/loved ones.” Fazeela About Fazeela Fazeela Hafejee has over 20 years’ senior strategic leadership experience in the Health and Social Care field as a Social Worker. She qualified as one of the first independent Mental Capacity Act (IMCA) professionals in 2005. Fazeela has extensive experience of supporting individuals who need care and support, their families and/or carers and organisations to meet their needs. She is passionate about social justice, human rights, collective responsibility and respect for diversity and inclusion. What Fazeela shared with the Panel about her use of the Human Rights Act: Fazeela uses the HRA in decisions involving capacity and detention ensuring that any restriction of the right to liberty is lawful, legitimate and proportionate. Fazeela shared with the Panel that social work teams across the UK, use the HRA every day to make crucial decisions about care and support for individuals and their loved ones. In Fazeela’s own words: “Social Workers are working within the HRA every day, every decision. My team and I use the HRA as a legal framework for making right-respecting decisions. There is a specific focus on the right to life, the right to liberty and to private and family life within social work practice. My fear is that changing the HRA could water down protections that social workers use every day to uphold rights in practice.” Joe About Joe Joe is the Chief Executive of 'All Wales People First' the united voice of self-advocacy groups and people with learning disabilities in Wales. Joe takes his direction from the All-Wales People First National Council (elected members) and the Board of Directors. Joe is also a Trustee of BIHR. Joe is the Chief Executive of 'All Wales People First' the united voice of self-advocacy groups and people with learning disabilities in Wales. Joe has learning disabilities and has both personal and professional experience of what happens when people’s rights are not respected. What Joe shared with the Panel about her use of the Human Rights Act: Joe and members of All Wales People first use the HRA to challenge services and create positive change in people’s lives. The example he shared on the Roundtable was of a challenge to the isolation policies of a supported living unit which did not respect the right to liberty (Article 5) or the right to private life (Article 8). In Joe’s own words: “After attending a BIHR training session, myself and a member of All Wales People First used the HRA to challenge a Local Authority. The member was living in supported living run by the Local Authority, any time they left the supporting living unit, staff told them that they would have to isolate in their room. BIHR supported us to challenge by raising that this was a restriction of the right to liberty (Article 5) and the right to private life (Article 8). We raised that this was not a lawful, legitimate or proportionate restriction of this right. Although this issue had been going on for a while, it was resolved the day after raising the legal duty under the HRA.” I want to be clear that the barriers faced by people with learning disabilities have always been there, this stuff isn’t new, but the Human Rights Act is a positive framework to challenge some of these barriers.” Angela About Angela: Angela is Adrian Jennings’ mother. Adrian was pronounced dead on arrival at hospital at the age of 32, two weeks after his discharge from an inpatient mental health unit. Adrian’s inquest concluded that his death had been contributed to by a failure to implement and communicate an effective support plan following discharge from hospital. Angela had to rely on Article 2 of the Human Rights Act to secure an inquest that would investigate what happened, and hold the NHS Trust, the Commissioning Group and the Police to account for their failures to protect Adrian’s life. Find our more here. and watch Angela’s appearance at the APPG on Legal Aid here. What Angela shared with the Panel about her use of the Human Rights Act: Enactment of Article 2 of the HRA allowed us to bring the inadequacies of the systems in place within local acute health services and mental health services out of the shadows. Applying Article 2 provided us with a forum to shine a light on procedural and system failures. Succeeded in ensuring matters that contributed to her son's death were acknowledged and consequently improvements were made to prevent future deaths. In Angela’s own words: “We’re now helping lots of people and preventing unnecessary deaths, and thankfully, we were able to do that because of applying Article 2. Craig About Craig: Craig is the father of Cameron Mathieson, a child with severe disabilities. Cameron’s family were denied a disability benefit after Cameron had been in hospital for 84 days. Used Article 14 ECHR to successfully challenge this withdrawal of benefits in the Supreme Court, find out more here. What Craig shared with the Panel about his use of the Human Rights Act: Craig and his family did not claim the benefits they were entitled to until both parents had to give up work to care for their children, had sold all their assets and spent all their savings. The Supreme Court ultimately unanimously ruled that the Secretary of State had breached Cameron’s rights under Article 14, read with Article 1 of Protocol 1 and Article 8. The 84-day rule was repealed 11 months later for everybody under the age of 18. Cameron’s legal aid was stopped while the case was ongoing. Craig asserted that the lack of properly available legal aid makes the HRA only accessible in theory. In Craig’s own words: “What I would ask you to recommend from the bottom of my heart is that the Human Rights Act and access to justice for all should be strengthened, not hollowed out even further. Because in a free and democratic society, what possible reason could those elected to serve us have to fear having to be fair and honest in their dealings with us?” M About M: M acted as a litigation friend to her disabled daughter in an HRA challenge relating to charging for council-provided care. Their identities were ruled not to be disclosed, so she took part anonymously and avoided specifics of her case. What M shared with the Panel about her use of the Human Rights Act: M’s daughter was charged at such a high rate that it was having a detrimental effect on her quality of life. She had no way of supplementing her benefits as she was unable to work. The court found that the policy discriminated against M’s daughter as a severely disabled person, contrary to Article 14, read with Article 1 of Protocol 1 and Article 8 M and other affected people spent a long-time campaigning on the issue before eventually taking legal action. The facts were the same all along, but nothing changed until she used the Human Rights Act. In M’s own words: “I can confidently declare that had we not been able to use the HRA, then severely disabled people would still be in this dire state. The issue I see if that this should be made more accessible, not less.” Diane and Liam About Diane and Liam Diane is a widow who was not allowed to record her deceased husband as the father of their two children on their birth certificates. She used Articles 8 and 14 to challenge this rule. The decision is unreported, but it resulted in Parliament amending the law by the Human Fertilisation and Embryology (Deceased Fathers) Act 2003. Liam is Diane’s son, who won the right to have his father listed on his birth certificate. The JCHR summarises the case here. What Diane shared with the Panel about her use of the Human Rights Act: Experience of two court cases, before and after the HRA to secure family life rights. The first case enabled Diane to conceive her husband’s child, following his death. She won on EU law, but without the HRA in effect, she was frustrated at the barriers to bringing human rights arguments. Diane argued in the media for the introduction of the HRA, and after it came into effect, she was able to rely on it to ensure that Liam and Joel’s father could be named on their birth certificates. In Diane’s own words: “We are all human. Human rights law is the thread running through my life. It unites – or should unite – us all. You never know when you’re going to come to have to rely on it.” What Liam shared with the Panel about his use of the Human Rights Act: Having his father on his birth certificate gave him an identity and a sense of who he was. Now currently works in education, where he is given mandatory training in, for example, safeguarding and GDPR, but never in human rights. He finds that there is a lack of knowledge and understanding about human rights. In Liam’s own words: “For quite a lot of people, where the Human Rights Act comes into play isn’t necessarily something that they decide upon, it’s something that’s invoked by their circumstances or disability or ethnic group”.