Providing bespoke care nationwide for clients with spinal injuries and neurological conditions
The term ‘complex care’ encompasses a range of needs requiring ongoing essential specialist support. In the past, people with complex needs were confined to formal care settings and their care was highly medicalised. People with complex needs have one or more conditions which mean they are dependent on specially trained carers. ‘Complex’ means they may be also dependent on medical technology and may require full time care[i]. In addition to their complex needs, they are also likely to need support with their basic care needs.
Advances in technology have enabled people with even very profound additional needs to remain in their own homes while receiving essential treatment and ongoing adaptive management of their conditions.
Enabling people with complex care needs to live in their own home and live the kind of life they want requires some careful planning. Plans of care must be based on a thorough assessment and understanding of the person needing care. This assessment should follow a holistic framework – i.e. it should be a ‘whole person’ approach which takes social and societal needs and desires into account as much as physical and medical requirements[ii].
Planning a complex package of care is a multi-disciplinary health and social care team undertaking.[iii] When planning a discharge home from a rehabilitation setting or a transfer from another care provider, all the needs of the individual should be assessed, and this requires input from a range of professionals. Additionally, a person-centred approach means putting the actual wishes of the individual at the forefront of all decisions made.[iv]
When a person is leaving hospital or a rehab facility with new complex care needs, their medical team will be heavily involved in discharge planning. Physiotherapists are essential contributors to long-term care planning, as they take responsibility for the care of respiratory conditions, ventilation and cough-assist devices as well as movement and physical therapy. Occupational therapists are a key part of the team involved in getting a person into their own home or an adapted living environment with every aid to accessibility and ease of care. Nurses and social care managers take all the different needs of the individual into account to make the best possible plan for their day-to-day care going forward.
Meeting an individual’s needs in the community
Creating an environment where a person can return to their home and have all their care needs met requires a practical assessment of their basic care needs, social and emotional needs, and their complex or medical requirements. Understanding what an individual needs is the first step towards meeting those needs through an adaptive and professional care package.
When creating plans for care, healthcare professionals often talk about ‘ADLs’, or ‘Activities of Daily Living’. The ADLs are, broadly, a person’s most basic requirements to remain comfortable and in the best possible physical health. The care team must, as a minimum, ensure that any ADLs that a person is unable to manage independently are met by carers. The basic ADLs are usually considered to be:
Hygiene: many people require assistance in their own homes with washing and bathing, teeth, nails and haircare. Carers who assist with these needs should aim to maintain the standards that the individual would maintain themselves if they were able to.
Nutrition: Whether unable to acquire food and prepare meals or physically feed themselves, meeting nutritional needs is an incredibly important part of a carer’s role. Liaising with dieticians and nutritionists may be required for people at risk of under-nourishment. Observing the dietary preferences, ethical and religious choices people make in their diets is essential and an absolute human right which could be easily overlooked for people who are unable to advocate for themselves. The role of a carer is to advocate in the person’s best interests, in line with their choices.
Movement: Someone with reduced or little control over their own mobility may require regular positional changes and pressure area care to prevent wounds. Following physiotherapy plans to maintain healthy muscles and joints can fall under the remit of formal or informal carers. Carers who are dedicated to a single client can become well versed in their need for movement and mobility aids, helping them to maintain as active a lifestyle as possible, and enabling continued outdoor time, travel, social interactions and more.
Continence: Meeting care needs includes assistance with continence aids and managing basic bowel and bladder care.
Dressing: Not only part of a person’s physical personal care needs, dressing and choosing clothing and appearance is socially and culturally incredibly important. The way we dress can express a lot about who we are. Carers who can really get to know an individual and their family and social circle are well-placed to help maintain the social as well as physical aspects of their client’s appearance.
In addition to universal basic care needs, everyone should have the right to try and attain the kind of lifestyle they desire. If it’s possible for a person with extra care needs to continue to maintain their position in their family and friendship groups, social interests, career ambitions and education, then putting care in place to enable these goals to be realised is essential.[v]
The social and emotional needs of any person must be valued just as highly as the physical needs. Meeting the basic activities of daily living is only the absolute baseline to enable a person with complex care needs to return to or begin the style of life they wish to lead.
Somebody with a significant congenital or acquired need for assistance in their everyday lives is also likely to need help with shopping, maintaining their living conditions and managing practicalities like utility bills and finances.
The conditions which make a person’s care needs complex may have a significant impact on their verbal and non-verbal communication abilities. Everyone involved in their care has a responsibility to make sure they’re helping to meet that person’s needs and desires, but communication issues can be a barrier to engaging the client – the most important member of the team – in vital decisions about their life. The value of long-term carers who become part of the larger support network of that person cannot be overstated. The way a carer advocates for their client is more likely to be aligned with that person’s actual desires when they know each other well.
When someone has new complex care needs, they face choices over the best way to meet their needs while enabling them to live the kind of life they desire. For some, a care home type setting or assisted living facility might be the best choice[vi], but choosing a complete care package that enables them to live safely and in their own home is very often the most desirable choice.
In addition to basic personal care and social care needs, complex care needs that can be met at home include:
Respiratory care: From people with high spinal cord injuries meaning that they require specialist tracheostomy care and are unable to breathe without continuous mechanical ventilation, to people with mildly reduced diaphragm control who may need occasional cough assistance. Respiratory care needs requiring mechanical devices, continuous monitoring or specially trained carers will come under the umbrella of ‘complex care’.
Enteral nutrition: For people who cannot meet their nutritional needs with oral diet due to, for example, their ventilation and tracheostomy needs or a compromised swallow reflex after a brain injury. Home carers can deliver bolus percutaneous endoscopic gastrostomy (PEG) or nasogastric tube (NG) feed, medications and fluids, or can manage continuous mechanical pump feeds. Carers with clients who are PEG fed receive specialist training in PEG care and troubleshooting.
Bowel and bladder management: from simple catheter care and continence aids and management to specialist management of complex bowel conditions, home care providers can help people stay in their own homes even with significant continence needs.
Problem-solving: caring for people with complex needs requires a good head for problem-solving and identifying issues despite communication barriers. Carers need to be able to recognise potentially serious complications of complex needs, such as autonomic dysreflexia or urinary retention.
A formal care team is instrumental in meeting a person’s desire to stay in their own home and have their complex care needs safely managed. The role of informal carers – normally family members or close friends – should also be valued, and the strain of being an informal carer for a family member should also be acknowledged[vii]. The level of involvement family members want in complex personal or medical care varies from person to person, and the wishes of the family and the person requiring care should be honoured.
Getting the right care package means that continuous support can be integrated within the family or household setting. Members of the family and social circle of the person needing care can feel like they have responsibility to learn to be a formal carer and assume that role[viii]. In fact, a good care package should be able to support families in taking whatever role they want to while enjoying being part of the everyday life of someone with complex care needs.
Family members and other informal caregivers, if they feel confident in their loved one’s care package and team members, can go back to their incredibly important roles as partners, parents, children or friends of the individual needing care. Taking on a significant portion of the practicalities of caring for someone with complex needs can put undue pressure on a family member.
The emotional and physical stress of becoming an informal carer can be compounded by concerns over finances, quality of life, loss of income and health anxiety[ix]. Formal care packages can take a lot of that stress away. Some people want to be closely involved with the medical and personal care of their loved ones, whereas other clients and their families feel that having formal carers to make up any deficits in self-care ability means that they can enjoy a more ‘normal’ relationship without the pressures of supporting extra care needs.
People with complex care needs are part of larger family and social circles, and any good support package should recognise and value the importance of each person’s connection.
Carers undergo specialist training to meet the needs of their individual client – the primary reason for this is to enhance the safety and experience of the person receiving care. A secondary result of providing specialist education for paid carers is that it shows that their work is valued, and that their expertise and skill set are important and worthwhile.
When choosing a care provider for long-term, full-time care, it is essential to ask about what kind of support they give their staff, and what their staff turnover is. A care provider which values its employees and the jobs they do will have happier, more engaged staff and better client outcomes. Employee retention is better when people are appreciated at work, which translates to a happy, stable workforce, the benefits of continuity of care, and the best possible care given.
Nursing and formal care packages need to be adaptable for people with fluctuating conditions or those at risk of deterioration. As people with complex needs often require ongoing medical input, a care package should make provisions for access to medical services such as outpatient clinics and planned or emergency hospital admissions.
Having a small and dedicated long-term care team means that the carers and the person receiving care get to know each other well. Carers who know their clients well are best placed to notice when something isn’t right and manage that appropriately. This can help to avoid hospital admissions or can mean prompt evaluation and treatment of illnesses or changing care needs.
Having a full-time care package enables safe, continuous management of almost any condition while enabling people with complex care needs to live full and satisfying lives. Carers can make up any deficit in a person’s ability to care for themself. Good carers make it possible for the person receiving care to continue to socialise, undertake work or education, and generally enjoy life.
Having formal carers does not take away a person’s independence; a good package of care enables independence, despite restrictions.
[iii]Kuluski, K., Ho, J. W., Hans, P. K., & Nelson, M. L. (2017). Community care for people with complex care needs: bridging the gap between health and social care. International journal of integrated care, 17(4). https://dx.doi.org/10.5334%2Fijic.2944
[iv] Bunn, F., Goodman, C., Russell, B., Wilson, P., Manthorpe, J., Rait, G., … & Durand, M. A. (2018). Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis. BMC geriatrics, 18(1), 165. https://doi.org/10.1186/s12877-018-0853-9
[v] Vrijhoef, H., and R. Thorlby. “Developing care for a changing population: supporting patients with costly, complex needs.” Nuffield Trust (2016). https://www.nuffieldtrust.org.uk/research/developing-care-for-a-changing-population-supporting-patients-with-costly-complex-needs
[vi]British Society of Rehabilitation Medicine. (2013). Specialist nursing home care for people with complex neurological disability: guidance to best practice. https://www.bsrm.org.uk/downloads/bsrm-guide-to-best-practice-36pp-final-4-12-13.pdf
[vii] Sara M. Moorman, PhD, Cameron Macdonald, PhD, Medically Complex Home Care and Caregiver Strain, The Gerontologist, Volume 53, Issue 3, June 2013, Pages 407–417, https://doi.org/10.1093/geront/gns067
[viii] Kreitzer, N., Bakas, T., Kurowski, B., Lindsell, C. J., Ferioli, S., Foreman, B., … & Adeoye, O. (2020). The experience of caregivers following a moderate to severe traumatic brain injury requiring ICU admission. The Journal of Head Trauma Rehabilitation, 35(3), E299-E309. http://doi.org/10.1097/HTR.0000000000000525
[ix] Smith, C. E., Piamjariyakul, U., Yadrich, D. M., Ross, V. M., Gajewski, B., & Williams, A. R. (2010). Complex home care: part III-economic impact on family caregiver quality of life and patients’ clinical outcomes. Nursing economic$, 28(6), 393. https://www.ncbi.nlm.nih.gov/pubmed/21291060