This case study forms part of the publication, Bespoke support for people with learning disabilities and autistic people, an evaluation on the impact consequence for local authorities and councils of delivering bespoke support to autistic people and people with a learning disability, including people who have been detained under the Mental Health Act (or at risk of being detained).
The support I have here is second to none, but I can’t tell you how much work it takes”
Janet, Direct Payment User
Janet is the parent of a young man with learning disabilities and bipolar disorder, David. Janet shares her journey of trying to get the right support in place for David so that he never again has to experience the trauma and distress of being in an inpatient facility.
Janet started by sharing a video she had made about David.
In the video, a collection of photographs was shared with subtitles telling David’s story. David had always had a small direct payment, but for his family to safely keep and maintain their home while they provided his primary support, they needed additional staff and repairs costed into his budget.
Without this, eventually there was an incident where Janet was seriously injured, and this resulted in David being admitted to an ATU. He had grown up in the family home surrounded by friends and family, but a significant deterioration in his mental health led to him being moved away from his local area to a mental health hospital setting, because there was nowhere available for him close to home. David was transported for two and a half hours, 180 miles away from home, in a caged ambulance and without a seatbelt.
While in hospital, he experienced significant abuse, physical restraint, and restrictions on visits from family.
Upon admission to hospital, David was physically fine, but within a month he developed a severe condition called Tardive Dyskinesia due to the side effects of the various medications he was being administered in hospital. David lost over 14kg in bodyweight. He regressed in his living and independence skills and became doubly incontinent. During the course of his inpatient journey, David experienced long periods of segregation, seclusion, and physical injury as a direct impact of the inpatient settings he was in.
Between the ages of 16 and 23, David stayed in a number of different mental health institutions.
Every inpatient setting David had stayed in were later either subject to investigations or closure, due to the exposure of poor and/or unsafe practices. The family knew that he had experienced a terrifying and traumatic time whilst away from home."
Even though he is now living back at home, and now with excellent support in place, David is still experiencing trauma from this period in his life.
David’s family were determined to fight for him to return home and knew that the best care he could get would be through a direct payment arrangement, which would enable them to self-direct David’s support arrangements themselves. The family came up with all sorts of creative solutions along the way, but they were all ignored by commissioners. Janet identified numerous properties and put them forward for consideration. The family had explored the possibility of building a bespoke home for David in their back garden, but this was not achievable due to the severity of his needs and the space available to them.
They even purchased a plot of land next door to their home with the intention to build bespoke accommodation and approached NHS England and the local authority to offer this as a way of supporting the development of accommodation which would work for David and others in need of similar accommodation. This discussion did not progress.
In his last hospital admission, more concerns were raised about poor care, and the hospital took the action of serving David notice. The alternative residence the hospital team were discussing moving him to would be intended as a permanent placement and was even further away from his family and all of his connections. It was another locked inpatient facility which would be a long-term and permanent placement for David.
Janet was determined this would not happen to David, so the family fought for more appropriate local housing options to be explored and were eventually successful in getting agreement that he could be housed locally and be supported under a direct payment arrangement again. Initially a bungalow was found about 20 miles from David’s home, so a discharge date was set. However, the adaptations needed for the bungalow to be appropriate were substantial, and it became very evident to the family that, due to the trauma and harm from admissions, the property was not sufficient to meet David’s needs.
It took two years of fighting for the eventual decision and a Strengths, Weaknesses, Opportunities and Threats (SWOT) analysis meeting for it to be agreed that the safest and best place for David to live was in his own home in the place he had grown up in."
Eventually, a property was identified on the same street as the family home. After lengthy discussion and negotiation, a Transforming Care grant from NHS England has been agreed to purchase the property, and David will be the sole tenant. The property is being adapted for his specific living requirements, to create a comfortable home, which will be a safe and robust environment for him to live in, supported by a bespoke team.
The staff who now support David at home have been recruited and selected by his family and people who know him best. They have been selected on the basis of values, character traits, interests and skills which will enrich David’s life and enable him to progress and develop. They are helping David to rebuild his skills and his confidence, whilst they wait for his new home to be adapted specifically for David and his needs.
At the moment, the staff team provide support to David from his family home as a base. Janet is coordinating and managing the staff team, via the direct payment they receive for David’s support.
Janet does everything that the support staff do, plus she completes all the coordination of shifts, rota management and payroll. Janet explains that most of her days supporting David and coordinating his team are around 18 hours long. It is really hard work. Janet and David’s team write all of the care plans and risk assessments themselves, and the only clinical support involved over the
past two years is an intensive interaction specialist - this was only put in place because Janet sought it out herself. This arrangement provides excellent support to the staff and gives them the opportunity to reflect on the skills they have developed to communicate with and support David really well. This helps the staff to feel valued.
Janet is working towards transitioning David’s support package and the personal assistants that they employ with his direct payment over to a small, local and independent provider organisation, which is newly registered and has supported David and Janet to develop his support and liaise with the MDT.
Janet is keen to provide protection for the staff team, who have been so key in David’s good support, and ensure that what is working so well for him now will be sustained for the foreseeable future.
As a direct payment user, if David goes into hospital at any time, the direct payment will be taken away from them after one month, and Janet would be unable to continue paying the staff in order to retain them. By transitioning over to a provider organisation, this offers longer-term job security for the staff, which promotes continuity of care and support for David. The small provider taking on David’s support package has been set up by somebody who worked with him many years ago and knows David and his family really well. There is trust between them. Janet has also recognised the need for the staff to receive supervision and support from someone who is not a family member of David’s.
David is currently waiting for the adaptations to be completed on his new home so that he can move in with his trusted supported team."