Coming Home Implementation: report from the Working Group on Complex Care and Delayed Discharge

Vision

Vision: The human rights of everybody with complex care needs are respected and protected and they are empowered to live their lives, the same as everyone else.

Mission Statement: By March 2024 we want and need to see real change with out-of-area residential placements and inappropriate hospital stays greatly reduced, to the point that out-of-area residential placements are only made through individual or family choices and people are only in hospital for as long as they require assessment and treatment.

Vision Statement:

Scotland is committed to meeting its Human Rights obligations for people with learning disabilities, which are outlined in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)

This commitment has been set out in the Scottish Government's National Performance Framework and as proposed in legislation through the Human Rights Bill.

Scotland must provide the best possible services for people with a learning disability to enable them to lead high quality lives within their family and/or their community where they experience personalised support consistent with a Human Rights Based approach.

The current situation must change. It is unacceptable that people are spending large portions of their lives in hospitals or other settings if they are medically fit for discharge. 'Care in the Community' as first mandated in The Same as You (Scottish Executive, 2000) has still not been universally realised and we are failing those who are still delayed in hospital or in inappropriate out-of-area placements through the lack of provision of proactively-planned quality care and housing in community.

The Panel Principles: Taking a Human Rights Based Approach (https://www.youtube.com/watch?v=_8Qa6GXaZgA)

All people with complex care needs must receive excellent continuity of care. Everybody with a learning disability and complex care need who can should be able to live in their own home, supported by specialist staff. Where there is a genuine therapeutic reason for individuals to stay in hospital they should receive appropriate specialist support in the short term, with a clear plan in place for them to transition out of hospital and back into their community. A nowhere else to go but hospital scenario will be extinguished.

The wishes and needs of the individual must be at the heart of this process. We want to ensure that all adults with complex needs have choice and control over the care and support that they receive. Each individual should be supported and enabled to be included, respected, treated with dignity and protected throughout their life journey.

Professional and expert support through genuine allyship is key, staying true to nothing about us, without us. This allyship must aspire to truly know the person, listen to them and their families, be ambitious with them and always act in their best interest. There must be good communication and involvement at all times.

To achieve this vision will require a transformational change through committed thinking and planning and genuine collaboration across the entire system. We recommend a new framework, underpinned by strong local and national partnerships, to deliver the innovative and quality services needed to support people with learning disabilities and complex support needs who are placed in unsuitable out-of-area placements, or who are inappropriately admitted to hospital, due to breakdown in their community-based support. This must happen without delay and there must be real visibility and accountability going forward.

Participation

People should be involved in decisions that affect their rights.

Accountability

There should be monitoring of how people’s rights are being affected, as well as remedies when things go wrong.

Non-Discrimination and Equality

All forms of discrimination must be prohibited, prevented and eliminated. People who face the biggest barriers to realising their rights should be prioritised.

Empowerment

Everyone should understand their rights, and be fully supported to take part in developing policy and practices which affect their lives.

Legality

Approaches should be grounded in the legal rights that are set out in domestic and international laws.

Case Study Louis' Life

The view from a mother: What it is like living in Scotland with a complex and profound learning disability

Louis is in his early 30's and lives with Complex and Profound learning disabilities, and is also autistic. He had enjoyed six years of high quality of life in a care home, with a stable staff team who understood his 'language' and needs, until the home's closure was announced. Ordinary Place of Residence rules meant there could be no continuation of care staff with a change of designation to 'supported living' as the local authority stood to gain responsibility for all 8 additional placements. Residents were therefore to be placed by their own authorities.

“ Ordinary Place of Residence rules meant there could be no continuation of care staff”

Louis' mother and social worker searched for an alternative placement however there was nowhere in Scotland. Louis' mother began planning for long-term solutions, but soon found nothing was achievable within the six months' notice period. As Louis faced eviction, a home was identified in England, 250 miles away. It was privately run specialising in 'challenging behaviour.' The facility was far away, institutional, but there was no alternative and so Louis was moved there. Louis' mother had no option but to travel to visit him there.

“ The facility was far away, institutional, but there was no alternative”

No transition was offered for Louis or his new care team. Instead, Louis' mother drove him there personally, staying overnight at personal cost for days and weeks to offer reassurance and love to Louis. Given her expert knowledge of caring for Louis she was able to assist with training staff and she returned weekly to support this transition for Louis. The primary barrier for Louis and staff was communication. Staff did not understand what Louis was saying and vice versa. This emphasised a power imbalance. Louis needed skilled care that accounted for his fear, bereavement and homesickness. However, staff were relatively inexperienced and unfamiliar with Louis, with no professional support for therapeutic approaches. They were required to do a job that was more skilled than they were equipped for. Louis expressed himself through the only language left to him: destructiveness towards property, and aggression to people.

Louis' challenging behaviour was managed through restraint, which was both pharmacological and physical in nature. Over three months, the cycle of restraint and protest grew. It was traumatic and injurious for Louis, his mother and staff. Professional services within the facility were later engaged including clinical psychology, speech and language therapy and occupational therapy. Louis' desire to return home was identified as a major factor in his distress in reports, along with his need for skilled communication, routines, a mix of activities, and a greater understanding of autism and complex needs. Local authority commissioners noted the consequent rise in costs. Nobody from the commissioning team ever visited.

“ a greater understanding of autism and complex needs”

As costs rose towards £6,000 per week, the local authority planned to bring Louis back to Scotland. They identified a vacant city centre flat, managed by one of their social care organisations. They proposed care provided by two organisations, one of which had previously been commissioned and another organisation, who had been originally designated for Louis' long-term care. Louis' mother objected, as did managers from the second care organisation. The flat had no garden, no safe access to outdoor spaces. Combining two care organisations created complications in delivery of services. The family and senior managers' objections were overruled.

Louis returned to Scotland to the new care provision, again without transition. Recruitment and retention of staff was a problem, even before Louis arrived. The primary barrier between staff and Louis was communication. There was a lack of skilled care suitable for Louis' complex and profound needs.

“ There was a lack of skilled care suitable for Louis’ complex and profound needs”

After seven weeks, Louis was admitted to the NHS Learning Disability Assessment Unit under non-clinical crisis following service breakdown and challenging behaviour. Louis remains in the unit 3 years later.

Louis has been detained in hospital for three years. He was declared ready for discharge in April 2021 and has been in Transition to his own home since February 2021. His experience of hospital can be characterised as 'containment', with lack of meaningful occupation, poor therapeutic understanding of his verbal communication, who he is as a person (his spiritual needs), resulting in unhappiness and protest behaviours.

Louis continues in transition to his own home. It has taken sixteen months to date. The major constraints are recruitment of care staff and development of systemic management practice to ensure all staff are skilled and confident in supporting Louis. Louis' underlying needs are profound and multiple, requiring flexibility and ongoing learning for individual carers, managers, the care organisation, commissioners, Louis, and his mother, to integrate and use available resources. As Louis' mother I have led the project, motivated by Louis' best interests. I purchased accommodation, as Deputy to the Court of Protection; I also exercise an oversight and integrating role, as Welfare Guardian.