Marty - A Cautionary Tale

Author: Bob Rhodes

It may seem obvious, but risk-laden, congregate institutionalisation won’t end because we keep bringing people back to their communities. Concurrently we have to stop people, often during childhood, being railroaded into congregate holding pens that mask as therapeutic services in the first place.

It seems to me that we need to honestly address some very thorny issues:

Can the professions which assert knowledge and expertise in working therapeutically with, in particular, children and young people who have acquired extremely challenging reputations provide evidence that their interventions can terminate the apparently inevitable journey’s that so many of these youngsters traverse into the oblivion of congregate containment?
Would government and the professional services world commit unequivocally to ensuring the right of all children and young people to receive the care, support, and professional services they may need within their local communities and, by default, within the auspices of a caring family?
Is a social services system based upon making and managing a market in social care suited to securing and sustaining local, person-centred capacity?
Do we need to acknowledge that, as things stand, institutionalisation of ‘hard to be with’ children and adults is the statutory default position? “I was put away” is a phrase we hear all too frequently.

All of these questions are raised and informed by the following true story which I believe exemplifies the dilemma confronted by too many young people and their exhausted and despairing parents.

In 2021, a multidisciplinary Commissioning Team with a ‘Whole Life’ brief sought assistance from LivesthroughFriends. We were asked to prepare and support the implementation of a long term Good Life Support Plan for a then 16-year old Marty whose circumstances were subject to the oversight of the Court of Protection. Marty was ‘introduced’ to us by reference to his diagnoses of autism, moderate learning disability, and anxiety disorder. The situation in which we found Marty and his family was dire. His parents, consequent upon two, as they insisted, ‘failed’ specialist service residential placements had brought him home to their terraced house. In short order, Marty had trashed the family home, causing war zone-like damage during his frequent bouts of distressed behaviour. This had necessitated his parents moving into a neighbours’ property next door. Marty continued to be contained in the ruined property with his frequently vulnerable father providing the majority of his direct care and support. A specialist nursing agency had been engaged to provide 5 staff per day shift and 3 overnight, later rising to 5, however staff interaction with Marty was typically limited to handing medication through the doorway and intervening physically to respond to challenging behaviour, often using restrictive physical interventions and supine floor restraint. Additionally, Marty sometimes coped with staff presence at a distance so that he could get out for a drive and walk with his father.

Marty was unable to tolerate agency staff in the house during the day and so a flimsy gazebo had been erected near the back door where staff huddled awaiting the next incident. At night 3 staff stayed in the wreckage of the ground floor of the family home, calling Marty’s father to replace them when Marty stirred each morning. My meetings with Marty’s parents took place very early in the morning as Dad would no longer be available as soon as Marty wanted his breakfast! Their home and their finances in ruins, Marty’s parents were sleep-deprived, physically worn-out, and emotionally hag-ridden.

Yet, despite their exhaustion, they continued to fight for Marty’s best interests and contribute, at our early morning sessions, to our efforts to discover a workable way forward.

As the work unfolded we found that most of the members of the agency team were travelling long distances to their shifts and were frequently also working in other ‘crisis intervention teams’ in other parts of the country. While we had prima facie been engaged to develop and lead the implementation of a Good Life Plan, it was quickly apparent that we, primarily via the Specialist Behavioural Practitioner, Gerry, in the team I had assembled, were the key ‘supervisors’ of day to day practice and we, at Commissioners’ requests, provided essential engagement, inclusion and low arousal/behavioural support training to the agency’s staff on two occasions. The second course was very quickly required given the fervid churn of agency workers.

The arrangements within which we found ourselves seemed to be overseen by a highly ‘qualified’ multidisciplinary team convened by the commissioning lead. While there was evidence of work with Marty’s parents we were unaware of any therapeutic interventions with Marty. It was perhaps not surprising that he seemed to be labelled as ‘too hard’. Certainly it was the case that we were initially warned off trying to engage with Marty by everyone including his father. Nonetheless we knew that we would be unable to develop a cogent and progressive support plan without getting to know him and building elements of a trusting relationship. Fortunately, unlike our Commissioners, we were blessed with knowledgeable, skilled, resourceful, experienced and therefore confident behavioural and relational practitioners.

It didn’t take long for Gerry to engage Marty in pre-planned and well-telegraphed, purposeful 1:1 sessions developed around his plentiful interests and for the seeds of trust to be planted. We soon came to appreciate that Marty is a sociable young man who, despite finding time with others extremely challenging and spending significant time alone, enjoys spending short periods of ‘quality’ time with people of his choosing, providing that interactions are based around his interests and strengths and allow him a high degree of choice and control. We also recognised that Marty was living with intense levels of stress and hyper-vigilance which were repeatedly ‘topped-up’ by the trauma associated with frequent bouts of physical restraint. Consequently, the presence of staff – rather than being experienced as a source of support and relationship – rapidly increased his physiological arousal making ‘incidents’ more likely. Trusting relationships with individual staff would be essential to the success of Marty’s support, including the behavioural elements.

Suffice to report that, as Gerry’s sessions with Marty burgeoned, we learned a great deal about how to be with and support Marty, how to help him manage and reduce his stress levels, and the environmental conditions best suited to his needs. Frantic efforts to find an alternative to the devasted family home bore fruit when a house on a council farm holding was sourced and we were by then in a position to submit a very detailed and costed “Good Life Plan for a Young Person with his life before him”. We were detailed and explicit in explaining the necessity to commission a support provider with the potential to ‘make a fist’ of the demanding support plan produced.

We described the agency as follows (in the secure knowledge of a number of organisations that met significant parts of the brief):

"Practitioner-led – key decisions are taken by leaders who know Marty well and are invested in his plan and future
Committed to building and sustaining robust and resilient, interdependent teams
Grounded in strong, inclusive leadership with associated systems and structures
Proven in partnership work with families and wider communities
A strong person-centred approach visa-vie Autism
An avowedly learning organisation
Person/’customer’ centred – a track record in tenacity and subordinated commercial priorities
Committed to delivering ‘Good Lives’ and very clear about what that entails
Committed to the abolition of restraint and seclusion in human services and competent in Low Arousal informed practice
Strong staff retention practices, including the provision of pension benefits comparable to the public sector/NHSStrong on planning, organisation and communication
NB. Service leadership and management needs to be vested in the support Provider and not the MDT."

From our perspective it was self-evident that securing and sustaining a change in Marty’s fortunes required a creative partnership with and long-term commitment from an organisation very different from the crisis-intervention focused Nursing Agency which had been engaged in extremis, met few of the above criteria and, notably, majored in physical restraints and distant, inaccessible leadership.

Our organisation specification was very clear about the importance of practitioner leadership:

“The specific(on-site) Support Team Design will major on:
Leadership with ownership/personal responsibility
A structure of Leader, Deputy Leader, proven practitioners, and ‘apprentices in development’
Key resources devolved to service leadership
A Team with complementary knowledge, skills and gifts
A robust Team building approach with bi-weekly team meetings and a culture of debriefing subsequent to incidents of concern.”

Throughout our work with Marty, and long before submitting the Good Life Plan, we, and associated local clinicians, had repeatedly expressed concerns to the commissioners about:

the lack of a meaningful management and leadership structure in the arrangements commissioned from the Nursing Agency – it seemed that direction was vested in a Clinical Nurse Adviser who visited once a week and had other projects to oversee. (In due course following repeated requests, shift leaders were identified but, in our opinion, without the necessary organisational infrastructure and management authority)
the inappropriateness, given established best practice in supporting people with autism/sensory issues, of the large numbers of agency staff involved (our plan recommended 2:1 staffing levels enabling 1:1 engagement)
the commissioning of a ‘support’ regime focused upon incidents and control involving frequent restraint episodes.

And in conversations with MDT members and the lead commissioner we had repeated expressed concerns regarding the absence of a care organisation mindset. This was painfully evident when Marty moved to the farm. Where a Care Provider would in everyday circumstances take the lead in ensuring that everything was in place for his move this was not the case. Lots of basics had not been addressed when Marty moved in and the resultant chaos had inevitable behavioural consequences.

The move was ineffectively curated by MDT meetings and responsibilities and accountabilities were unclear. From our bystander perspective, it seemed that the system was acknowledging that the Nursing Agency primary role was providing specialist personnel skilled in physical restraints and crisis management. Our assertion that commissioners should urgently set about introducing an organisation with the potential to implement our proposals was countered with their protest that they had previously contacted large numbers of providers without success. We responded saying that we would have no difficulty introducing them to a number of proven organisations in the context of delivering the plan they had commissioned from us. This offer was not taken up.

Instead we were asked for a Word version of Marty’s Good Life Plan (we habitually provide our advice in formats that cannot be changed without our consent) in order that amendments could be made and our involvement was abruptly terminated when we were disinvited to an MDT meeting called to progress the implementation of Marty’s plan.

I do not know what caused decision makers to act as they did but would hazard that:

ambition for people with complex and challenging reputations was in short supply amongst them
feelings of hopelessness tinged with unacknowledged eugenic assumptions erroneously inform their thinking; reinforcing notions that ‘these people’ are not susceptible to change and have to be ‘managed’
ongoing commitments been made to the nursing agency provider when they were initially engaged without consideration of the long term implications for Marty.

I have no doubt that cost was not a determinant. Our proposals would have been significantly less expensive than those associated with retaining the agency.

After our ‘sacking’ Marty’s family and a number of involved professionals continued to seek our advice given their concerns that without a clear ‘roadmap’ and commitment to realise bespoke ambitious support arrangements for Marty his future would continue to be defined in terms of restraint and containment. Inter-alia, at their request, we signposted Marty's parents to both legal and independent advocacy advice; and undertook to do what we could to draw attention to Marty’s situation. Subsequently we engaged with the higher echelons of NHSE and, we thought, received a concerned and sympathetic hearing.

To the best of our knowledge, nothing ensued from that intervention. Some months afterwards Marty’s parents advised me that the possibility of engaging LivesthroughFriends for yet more training of the agency’s staff had been mooted by the commissioners. We didn’t hear from them, and would have restated our concerns on Marty’s behalf had we been contacted. After that the trail went cold.

In the opening remarks of our report to NHSE we made the following observation:

“We do not believe that those involved in decisions that will, in our not inexperienced opinions, exacerbate an already totally unacceptable situation are acting unthinkingly or with malice. We do, however, take the view that ignorance of best practice in this area of endeavour, low expectations, a services menu mentality, and counter-productive market management and commercial considerations take priority in the decisions they take. These prejudices over-ride clinical and social care considerations and have no normative basis.”