Total Community Care - Specialists in spinal & neurological care

Providing bespoke care nationwide for clients with spinal injuries and neurological conditions

02 Sep

Managing Complex Care Needs at Home

Complex care can encompass all or any of a range of support services, including physical, social, and emotional support with normal daily activities. These kinds of medical and social needs can arise due to traumatic injury, degenerative illness, or congenital conditions – some people’s care needs can also fluctuate with time and aren’t always predictable.

New care needs and their impact on a person’s quality of life can, and should, be managed well with a holistic, individualised care plan and well-trained, dedicated care staff. Managing complex care needs at home requires a multi-disciplinary, joined-up and cohesive approach[i].

Living a full and satisfying life with complex care needs is possible and everyone should have the right to attempt to live the kind of life they want – but when a person needs significant extra support, it can take some planning, preparation and adaptation to achieve safely and successfully.

Planning for discharging a person with complex care needs from hospital to their own home also requires a pragmatic approach and a frank evaluation of the risks, benefits and possible alternatives to care at home. Aligning expectations and hopes with realistic solutions can sometimes be a challenge as the home also becomes a place of work whereby specialist care staff operate.[ii]

The value of ‘home’

Highly trained, specialised care teams and the availability of increasingly sophisticated supportive equipment means that practically all health care needs can be met in almost any environment. This means that more and more people even with extremely complex needs can be supported in their own homes, giving them their best chance for freedom, flexibility and quality of life.

Conditions that would be severely life-limiting in the past which would previously have meant a lifetime confined to highly medicalised specialist care institutions, are now often managed and supported in the community. Advances in technology, rehabilitation and treatment, along with increased understanding, mean that clients with complex needs working together with their care teams manage even profound long-term conditions at home.[iii] Moreover, changes in attitudes and the mechanics of healthcare provision have meant that home care is not only possible, but that the choices and wishes of the people receiving the care are more valued than ever.

Going home with complex care needs

Getting home with new complex needs is a process that cannot be rushed – if the care needs arise after an acute event or a sudden change in condition, getting home from hospital requires a joined-up yet multi-faceted approach.

After an acute event which leaves somebody with new significant care needs, ongoing rehabilitation in a specialist treatment centre is likely to follow an acute hospital admission.

A rehabilitation centre’s aim is to support a person while their condition and abilities are stabilised to the point where they can go home. This rehabilitation can include physical movement and coordination practice, continence management and attempting to wean mechanical ventilation where possible. [iv]

Depending on the specific needs of the individual, adaptations may need to be made to their home or more suitable accommodation found – moving into a flat or bungalow, for example. Equipment will need to be installed and caregivers – both formal and informal – may need training in its use.

The right care team also needs to be assembled. This can involve informal carers such as family members; a specialised care team, however, is also essential for a person with complex needs. Nurse-led, and with highly trained carers, a care team should be able to safely manage any of the medical and care needs of their client. They should be able to recognise when there are problems to be solved and respond appropriately to unexpected changes.

Getting home from a hospital, rehabilitation centre or other assisted living facility takes planning – sometimes ingenuity – and it can take some time for everything to come together.

What complex needs can be managed in a home environment?

To be suitable for management at home, a person’s care needs must be reasonably stable which can require some time in a rehabilitation centre or similar setting. In effect, a team including physiotherapists, occupational therapists, speech and language therapists, consultants and nurses will work together with the rehabilitating person and their circle of family and friends. The rehabilitation team help to get the person to their best possible physical condition and ability, then plan for management of any deficits in their ability to care for themselves.

Complex care needs that can be managed at home include:

  • Respiratory care: people with high spinal cord injuries usually need some level of respiratory support. This can range from needing to use a cough assist device occasionally to help clear the lungs, to having a tracheostomy and being ventilator-dependent 24 hours a day. When someone is dependent on a ventilator, that also usually means being dependent on the people around them to look after the equipment, as well as the person. Carers supporting someone dependent on mechanical ventilation need to be fully trained and confident in troubleshooting; ensuring that the equipment is functioning, clean, charged up or plugged in, and can be repaired or replaced without delay.
     
  • Tracheostomy - Complex CareTracheostomy care: for managing tracheostomies at home, carers need to be trained and experienced in tracheostomy care, including having a good understanding of the anatomy and function, risks and troubleshooting, suctioning, connecting other equipment and so on.[v]

    Managing infection risk is of the utmost importance in tracheostomy care, so anyone involved in caregiving must understand personal protective equipment. Having a consistent, dedicated care team makes it easier for carers to stay up-to-date with changes in guidelines, such as increased precautions since the Covid-19 pandemic when performing potentially aerosol-generating procedures like suctioning.[vi]
     

  • Continence management: continence needs and aids can vary widely from person to person. The physical tools of bowel and urinary management can include ileostomies and colostomies, urostomies, suprapubic and urethral catheters, and simple pads and continence checks. People with reduced control or sensation can require bowel management through the use of laxatives, suppositories, enemas, and digital rectal stimulation and evacuation – all procedures requiring training, expertise and sensitivity.
     
  • Nutritional and fluid intake: for people with, for example, compromised swallow, a tracheostomy, or without the physical ability to feed themselves. Oral intake is impossible for some people with brain or high spinal cord injuries, however, their nutritional needs can be met at home through NG (nasogastric) tube feeding – a fine tube fed into the stomach through the nose, or PEG tube – a short tube that passes through the abdomen into the stomach. Dispersed or liquid medications, special liquid feeds and fluids can be given safely this way, with training given to carers to meet the needs of their individual clients.
     
  • Skin and pressure area care: people with limited mobility can be at risk of developing pressure damage or ‘bed sores’. Care teams and good planning helps to prevent pressure damage through the use of special mattresses and cushions, good continence care and moisture control and regular assisted positional changes.
     
  • Pain: chronic pain is a problem for many people with serious health conditions and complex needs. Careful management of the causes of pain can sometimes alleviate symptoms and pain without a treatable cause can be managed with medication. Specialist pain teams are dedicated to the safe and effective management of all kinds of pain and may recommend a range of solutions including passive or active movement exercises and the right combination of medicines. Cognitive therapies can also have good results in helping people to accept and live with their chronic conditions, including pain.
     
  • Communication: members of a care team who are dedicated to supporting one person are best placed to develop a rapport and understanding with that person. This can take the form of conventional verbal and non-verbal communication, or can involve more supportive or alternative forms of communication for people whose speech and movement are affected by their condition.[vii] Difficulties in communication, particularly after some forms of brain injury, can sometimes be associated with challenging behaviour. Again, a specialised support team who can really get to know the person as an individual over a period of time are the best people to help to look after someone with a need for emotional, behavioural, and communicative support.
     

Expecting the unexpected

With a team of dedicated and consistent carers, fluctuations in healthcare needs can often be met, and sometimes even anticipated. Longer-term employment of carers means that the person requiring care and the people giving care can develop good relationships and can also gain insight into identifying and managing normal fluctuations in health and needs.

Even with the best care and condition management, anyone can become unwell – someone with complex respiratory needs, for example, may be prone to chest infections, and more likely to become seriously ill with them. Managing acute illness at home is often possible with the right equipment and support, but unplanned hospital admissions are sometimes necessary.

With an individual, personal care team, clients can be accompanied in hospital by their long-term carers, who can continue their well-practiced individual care and support. Team members who are dedicated to the care of an individual can become knowledgeable advocates for their client when they’re unwell, providing continuity and stability at difficult times.

Person-centred care

Anyone living at home with complex health and care requirements should be able to expect a quality of life and comfort that’s acceptable, even desirable, to themselves and their close family. Facilitating a person’s desired lifestyle when they’re living with complex care needs requires careful individual care planning – a person-centred plan of care and a highly co-ordinated multidisciplinary team.[viii]

With an individual care package, a care team can be carefully managed to ensure that they understand their client’s medical and physical needs. Individualised assessment means that everyone involved can have highly specialised training and be competent and confident in managing even very complex physical needs, aids and equipment.

An individual assessment takes in more than just the physical and medical needs of the client; it involves all of the most important people in their life – family and friends – to develop a rounded picture of the individual and their lifestyle needs.[ix]

The best quality of care means the best quality of life

Facilitating good quality of life for someone with complex care needs is an ongoing process and it starts with understanding what’s important to the client.[x] The professionals involved in planning care need to appreciate the value of a ‘normal’ life, of a home and family, perhaps going back to work or pursuing dreams of travel and adventure.

‘Home’ means something different to everyone, and good care means valuing someone’s idea of a home life, family, social networks and their individual place in their community. Someone with profound care needs must continue to be valued to the people around them – as a friend, parent, partner, sibling or child. The importance of home, of family, of ambition and pleasure cannot be underestimated.

Quality care for you

At Total Community Care we help our clients and their loved ones choose the right people and the right plan to suit their needs and the lives they want to live. We think you should have the ultimate decision over the people you allow into your home and your trust. We believe that having a dedicated and consistent care team means better care for you and a happier group of carers.

We base our assessments and care plans on your needs and your wishes, and we facilitate meetings and interviews to build a care team where everyone’s personalities mesh and responsibilities are clear. This allows us to give the best, most individualised and person-centred care.

With Total Community Care, your health and happiness are paramount.

 

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IMPORTANT NOTE

Total Community Care provides care packages for individuals who require a minimum of no less than 70 hours per week.

[i] https://nam.edu/wp-content/uploads/2017/06/Characteristics-of-Successful-Care-MOdels.pdf

[ii] Dybwik, K., Tollåli, T., Nielsen, E.W. et al. “Fighting the system”: Families caring for ventilator-dependent children and adults with complex health care needs at home. BMC Health Serv Res 11, 156 (2011). https://doi.org/10.1186/1472-6963-11-156

[iii] Bennett, L., Honeyman, M., & Bottery, S. (2018). New models of home care. London, UK: The King’s Fund. https://www.kingsfund.org.uk/sites/default/files/2018-12/New-models-of-home-care.pdf

[iv] https://www.england.nhs.uk/wp-content/uploads/2018/08/Complex-home-ventilation-adult.pdf

[v] https://www.stgeorges.nhs.uk/wp-content/uploads/2013/08/appendix-5.pdf

[vi]http://www.tracheostomy.org.uk/storage/files/NTSP%20Advice%20for%20patients%20with%20a%20tracheostomy%20in%20the%20Coronavirus%20pandemic.pdf

[vii] Int J Lang Commun Disord. (2016) Impact of voice and communication deficits for individuals with cervical spinal cord injury living in the community https://doi.org/10.1111/1460-6984.12232

[viii] https://nam.edu/wp-content/uploads/2017/06/Effective-Care-for-High-Need-Patients.pdf

[ix] Kuluski K, Ho JW, Hans PK, Nelson M. Community Care for People with Complex Care Needs: Bridging the Gap between Health and Social Care. Int J Integr Care. 2017;17(4):2. Published 2017 Jul 21. https://dx.doi.org/10.5334%2Fijic.2944

[x] https://www.healthaffairs.org/do/10.1377/hblog20180622.306574/full/