Throughout childhood there is one team which deals with everything that the patient would need. As the children continue to grow, we wonder what will happen to them when they are too old to be cared for by the same team. So, what do we do with young patients who have been cared for very intimately by the paediatricians?
When they become adults, they could potentially find themselves thrown into a whole new world of healthcare which is not as homely, or as individualistic, as they would have experienced in the children’s services?
This particular demographic of patients faces plenty of challenges when transitioning to the complexity of adult life and, subsequently, adult responsibilities. Those individuals with complex physical and psychological health needs have additional difficulties in the road to transition. These needs would previously have been met by the same handful of individuals but, as they transition to the adult healthcare system, they will find themselves being transferred around multiple departments to provide them with the specialist care they require.
The introduction of transitional processes should probably start early around the ages of 12 to 14 to allow for a period of discussion and acclimatisation to ensure greater confidence in services by the ages of 16 to 18. The time required depends entirely on the individual and the complexity of care required. Some young people can transfer almost immediately to adult services whereas others require years of transition to ensure the optimal manner of transfer.
The process and team working on providing transitional services will differ from place to place. There will be qualified individuals responsible for ensuring the transition is as complete and as comprehensive as possible. There is no one definite system but each one works towards a common goal of providing a smooth and seamless “handover” of care from the Paediatrics team to Adult Health services.
All young people going through a process of transition should be provided with a written transition plan which would summarise and outline the key phases of the transition process. This should also have the names of the persons responsible for the specific aspects of the ongoing care needs. Should anyone not be sure of the process they are going through there will always be a main point of contact for clarification and explanation.
Some services will provide site and process visits to allow young people to experience the travel to a service and the site of the service itself. In some situations, depending on availability, they may be able to meet with some of the teams who may be providing them with care in the future.
Other aspects potentially covered could include medication as the young adult may be required to take on responsibilities including self-administration of medicines and treatments just as they would need to take on responsibilities in other areas of their lives.
The transition teams will also involve the parents or responsible adults in the transitional process as it would also take time for these responsible individuals to get to grips with the process of “letting go” of aspects of care which would previously have been their responsibilities.
The ultimate goal of any transition service is to ensure that the young person has all the skills and contacts available to ensure comfort and confidence in their transfer to adult health care services. This will feel somewhat like being “thrown” into a great unknown at time for all involved. The CQC had published a document with overviews and case studies of previous transition patients which is definitely worth a read by anyone going through this same process.
Just as the healthcare service plans to discuss transition early on, it would be ideal if families could have similar discussions at home around common themes such as;
- Learning the names and methods of taking medication, how much to take and asking the reason for taking the medication
- Seeing Health Care Professionals on their own for all or part of their clinic reviews
- Staying at hospital overnight on their own
- Monitoring hospital appointments
- Any questions around current and future healthcare needs
- How their condition may have impacts upon their lives in the future such as, for example, direct impacts on career, relationships, and intimacy.
It is essential that all people involved in the care of the young person, including the young person, should continue to ask questions around their care and to raise concerns with the relevant adult teams to ensure the best care going forward.
- Dr Jonathan Mamo is a Consultant in Neurorehabilitation at Renovo Care South Newton. He is also the Clinical Lead and Consultant for the Royal Berkshire Hospitals NHS Foundation Trust, Training Program Director for Health Education England Thames Valley and Clinical Panel Member for the Individual Funding Request Board for NHSE.
‘Don’t count the days, make the days count’
In our latest interview with the Brain Injury team at St Andrew’s Healthcare, we meet Dr Lorraine Childs, a Consultant Clinical Psychologist on Rose ward, one of only three secure neurobehavioural units in the country.
Dr Childs and the team on Rose use a neurobehavioural approach that supports people who have a forensic background to re-learn skills that have been impacted by their brain injury.
As she explains: “Unfortunately, brain injury can result in an increase in aggression, so we do a lot of work to identify what a patient’s goals are and help them to achieve their aspirations in pro-social ways that preclude the use of aggression.”
Co-production between patients and the clinical team has led to the development of programmes such as ‘Better Lives’, used to encourage people to take an active role in decisions about their care. These type of approaches are transferable across all settings where people are receiving support and rehabilitation following a brain injury.
We spoke to Lorraine to find out more.
What is your experience in mental health?
I have worked in mental health for over 25 years. I have worked across the UK including St Andrew’s, Broadmoor, Rampton and in New Zealand.
I specialise in Forensic Brain Injury. I used to specialise in LD but became very interested in the etiology of learning disabilities and people who had ABI from an early age.
What are the challenges in your role?
People who have a brain injury and require secure care tend to benefit from consistent, structured treatment.
Many of our patients are negatively affected by change and inconsistency. Working with large groups of staff can make it difficult to keep things consistent and this has been especially pronounced during the pandemic. I try to counter this by keeping things simple and comprehensive.
What do you most enjoy about your role?
Working with a team of staff and patients. Creating things together, that are meaningful and purposeful.
On Rose we have a really good structured neurobehavioral programme, developed by staff and patients, which works at both a group and individual level.
Describe the service you work in and some of the approaches that you use.
Rose is a medium secure neurobehavioral ward for people who have forensic backgrounds. Unfortunately, aggression is one of the things which can accompany brain injury and this is why some people need secure care to keep them safe.
We work with a neurobehavioural paradigm, helping people to learn new skills or relearn skills that have been affected by brain injury. We give patients opportunities through extensive vocational options and a range of therapies.
Our ‘Better Lives’ programme provides people with opportunities to learn life skills. Patients really understand that they are here as part of their journey to achieve a better life.
In fact, our ward icon and motto is Muhammad Ali and his quote; ‘Don’t count the days, Make the days count’. In other words, the patients can influence their own future every day.
Co-production is key to this programme. For example, as a result of ‘Better Lives’ sessions we have co-produced a ward clinical treatment philosophy, a healthy-living programme and an information leaflet for newcomers. Patients requested for this to include information about timetables, events, contacting family and there is a poem written by a patient about their experience of moving here. Feedback about this is positive, one new patient said “it is informative and puts the mind at ease”.
We encourage patients to take an active role in decisions about their own care, especially via Positive Behavioural Support Plans and utilising feedback. Increasing involvement encourages ownership and responsibility, even within a necessarily restrictive setting, and can help equip patients for their future in settings of lower security and community.
Describe a typical patient presentation.
There is a very diverse group of patients on Rose ward. Ages range from late teens to 60s. If I had to describe a ‘typical’ patient it would be a male in his 40s who had a brain injury in his 20s, usually because of a road traffic accident or substance related, leading to a loss of functioning, cognition, social and physical abilities.
Most people who come to Rose have spent up to 10 years in standard psychiatric inpatient units and often well over a year in prisons. In fact, 100 per cent have been in psychiatric units and 70 per cent in prisons but only 16 per cent have had any psychological or neurorehabilitation.
So for many, St Andrew’s is the first time they have had some treatment support for their brain injury needs.
What is the difference between Rose ward and a general neurorehabilitation ward:
Rose is very unique due to the forensic aspect of the ward. Rose specialises in working with people with high levels of aggression and working with people to help them to find alternative ways to express themselves and achieve goals.
What are the main interventions used:
Our key intervention is the neurorehabilitation programme. This aims to assist patients in compensating for the deficits they have in communication, volition and motivation, by providing a scaffold structure where they can safely develop skills required for daily life that are lost because of their brain injury or lack of opportunities in early life.
We also do a lot of health promotion and healthy living work on Rose and have presented at conferences and won awards for our work. I think lockdown had a negative impact on most of our waistlines and so we have an opportunity for staff and patients to work together to improve our diet and wellbeing.
What sets St Andrew’s apart:
St Andrew’s provides a clear and structured pathway for neurorehabilitation patients, with evidence-based success for patient outcomes.
This shows how patients progress in terms of increased levels of cognition, social skills, reduced levels of aggression, and increased levels of leave within the community.
Most importantly however, the patients have the opportunity to move towards their life goals. 50 per cent of patients from our Medium Secure Unit go straight to community rehabilitation. Most others advance to low secure. All go closer to home. This is what we are here to do. We do it well and help to shape Better Lives.
St Andrew’s Neuropsychiatric service provides specialist pathways for brain injury, dementia and Huntington’s disease across secure, non-secure and step-down settings. To find out more visit the website HERE
‘Better psychological support needed for frontline healthcare workers’
Frontline healthcare workers need a range of ‘flexible’, ‘easily accessible’ and ‘consistent’ psychological support to overcome the significant mental health burden resulting from the COVID-19 pandemic.
A team of psychiatrists and psychologists, who formed the Covid Trauma Response Working Group, say there needs to be an increase in mental health awareness training for all staff in health and social care settings, supported by more assertive outreach to identify those most in need.
In addition, more sustained funding is needed for psychological support services – not just during crises – and equity of access to support needs to be ensured between different teams, services and localities, across the entire health and social care sector.
Dr Jo Billings, associate professor at UCL Division of Psychiatry, who led the study, said: “In the UK, it has been estimated that 45 to 58 per cent of the frontline health and social care workforce met criteria for clinically significant levels of anxiety, depression and/or PTSD shortly following the first wave of the pandemic.
“This is amongst a workforce already under considerable strain pre-COVID-19, as evidenced by the growing incidence of stress, burnout, depression, drug and alcohol dependence and suicide across all groups of health professionals, worldwide.
“The need to support the mental health of frontline staff during Covid-19 has been recognised, however this pandemic has also highlighted a paucity of research on the mental health needs of frontline health and social care workers, and a lack of evidence-based guidance about what psychosocial support might be most effective in helping them.”
For the in-depth qualitative interview study, 25 frontline staff (17 female, eight male) from a range of professions, services and localities – but who all worked directly with Covid-19 patients – were interviewed between June 1st and July 23rd, 2020.
Health and social care workers were asked to describe their experiences and views about psychosocial support during the pandemic.
Support from psychological services, when available, was largely valued, and those who had accessed them, or knew others who had, spoke positively about them. However, there appeared to be large disparities in what was available and significant barriers to access.
Many described service provision as confusing and poorly communicated, leading to a lack of awareness about services available. It was also described as inflexible with some services only available Monday to Friday in working hours, which did not correspond to the shift patterns that most staff worked during the pandemic.
Further, many said they were too busy to access support services during the available times.
The interviews revealed there were ‘striking inconsistencies’ in the provision of mental health support across healthcare services, noted by those who moved between locations and specialties.
There were particular barriers to access for staff who were not employed by the NHS, restricting access to many NHS based services for social care staff and agency staff not on NHS contracts.
Participants also referenced an ongoing reluctance and stigma, summed up by Nathan, a junior doctor: “The problem with healthcare is that mental health is slightly stigmatised in healthcare workers and people don’t want to admit that there is a problem…they stress a culture of resilience and I don’t think anyone wants to be seen as being unable to cope with anything.”
Dr Billings, who is also a consultant clinical psychologist, said: “Significant steps need to be urgently taken to improve the psychological wellbeing and morale of the UK health and social care workforce and to ensure that the services they deliver to the UK population are sustainable, during the COVID-19 pandemic and beyond.
“Resources for support need to be made consistently available, and easily accessible to all staff.
“However, systemic and cultural barriers to access need to be addressed to ensure that accessing such resources is not inadvertently stigmatising.
“Access to resources also needs to be equitable, within different teams and localities and across the health and social care workforce.”
Other recommendations put forward by the group included staff having ‘protected time’ during work to access wellbeing and psychological services; staff who are redeployed between teams need additional support; role modelling by senior staff and culture change are needed to increase willingness to talk; and a flexible combination of peer, organisational and professional support, is most likely to be acceptable and effective.
Co-author, Dr Michael Bloomfield, UCL Division of Psychiatry and consultant NHS psychiatrist, added: “The results of this study show that a ‘one-size fits all’ approach to providing support is unlikely to be helpful. Nevertheless, these systems of support need to be coherent, consistently communicated and easily accessible.”
Nexgear Tango: increasing options on orthotics
As clinicians, when we consider our orthotic treatment options for users with neurological conditions, we should not be blinkered in our thinking and limit our treatment to a solid ankle foot orthosis (AFO).
Biomechanically we understand the theory and practical success of solid AFOs, however, focusing all of our clinical aims and attention on these principles can be doing our orthotic users an injustice.
In the same way that no two people are truly the same, no two neurological conditions are the same. Treating a child with hemiplegic cerebral palsy should be considered and managed very differently from an adult user with secondary progressive multiple sclerosis.
As clinicians, we often draw on our knowledge of one condition to support our decision making in treatment of another condition, but treating all patients with, (for use of a generic term ‘foot drop’) using the same prescription is not considering each patient as an individual.
In time and cost pressured clinical environments, it is easy to settle on a treatment plan by using our previously acquired experience or theoretical knowledge and not focus on what else is out there to help meet our end users functional goals.
The subject of individual treatment brings us nicely onto the use of ankle joints in custom made AFOs. The use of an ankle joint can be considered from the acute stages of a condition through to the long-term management of both stable and progressive neurological conditions. For a user with ankle range of motion (ROM), or even those with very restricted ROM, an ankle joint may help to improve multiple aspects of their daily lives; getting in and out of a car, increase their walking speed and improve the number of footwear options available to them.
From a clinician’s perspective, an ankle joint can help to encourage equal weight bearing, ease sit to stand, improved tibial progression, maintain or re-establish the rockers of the foot and ankle, to name just a small number of the many benefits.
The Nexgear Tango is an ankle joint with multiple functional options. Initially it could be used in rehabilitation with ROM stops, acting as a solid AFO and as a user’s stability and proximal strength improves, the mechanical ROM at the ankle can be increased, to allow the muscles to work through either a part of or their full ROM. The Nexgear Tango allows a clinician to manipulate the ground reaction force (GRF), which is the force exerted by the ground as an opposite reaction to the patients weight and acceleration. An anterior stop, which limits dorsiflexion in weight bearing, can be used to create a plantar flexed position of the foot and ankle and in turn offers increased stability to a knee joint affected by quadriceps weakness. A posterior reaction module can support propulsion into swing phase and compensate for week knee or hip flexors aiding ground clearance during swing phase.
Depending on the modular set up of the Nexgear Tango, the joint can offer restriction to ROM, active assistance to dorsiflexion in swing phase and active assistance or resistance to dorsiflexion and plantarflexion throughout the stance phase of gait. In practical terms, this might be to provide bilateral knee extension to a user with crouched gait due to diplegic cerebral palsy, or propulsion into swing phase and improved ground clearance for user with spina bifida presenting with triceps surae weakness. The options for set up and use are multiple and can be adapted throughout the long-term treatment process.
In many clinical instances, the Nexgear Tango is drawn upon after repeated failures of solid AFOs or less supportive and adaptable ankle joints have not provided the resolution to an active AFO user’s orthotic wear and tear. Clinical experience suggests the joint should be one of the first thoughts on a clinicians mind when looking to optimise a patient’s gait cycle and manufacture a robust and practical AFO. In the long-term treatment plan, the Nexgear Tango may save both time and money by preventing the need for repeated orthotic manufacture to accommodate changes in prescriptions and in turn reduce the number of clinical appointments. It will also provide the patient with an AFO that works to reliably support their functional goals.
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