Funding for Spinal Injury and Neurological Care and Support

Funding for Spinal Injury and Neurological Care and Support

What are the different types of funding available for spinal injury and neurological care, and what’s the best way to get funding?

Spinal injury, neurological rehab and ongoing care and support are extremely specialist, complex and multi-faceted. No two people are the same, and everyone has their own priorities and their own ways of living their life. When it comes to making decisions about ongoing support, choice is key.

Having choice over the way you are helped to live your life is such a basic and fundamental need that it is essential that funding shouldn’t restrict the way you live your life but rather enhance it. There’s a lot of information out there detailing the kinds of funding available, but it can seem daunting and complicated, right at a time when things need to go smoothly.

Here at Total Community Care (TCC) we want to ensure you’re getting the right funding to help you get the support you need to live the life you want. These are uncertain times, as political priorities realign and budgets for health and care are under scrutiny. The opportunities for funding are not always guaranteed to stay the same and we will always endeavour to be abreast of the changes to point our current and future clients toward the best financial advice for their needs.

From a pragmatic point of view, getting the right funding in place will allow for the best package of care in your own home. This should cover the whole 24 hours and all of your identified care and rehab needs.  Such packages not only enhance your life and independence, but also reduce the likelihood of unnecessary admissions to hospital or extended stays within them.

The extent of your needs will influence the kind of help and care you are entitled to. The presentation of your needs is crucial in accessing the correct funding. Accessing all the funding that you’re entitled to can give you the freedom to make choices – to choose care coordinators with experience in your condition, to choose your own priorities, to choose the people you’re comfortable with allowing into your home, to choose the opportunities you follow.

The routes for funding ongoing care needs can seem complicated; there is a mixture of resources available from different authorities – local government, various NHS initiatives, personal health insurance and more. Everyone should be able to request an assessment for care funding and have the ultimate decision regarding the direction their funding takes them and the care they receive.

The current opportunities for help towards funding are, in a nutshell:

1. Statutory Funding

Statutory funding can come out of one of two state budgets – the budget for health, and the budget for social care. Obtaining funding involves an assessment of your needs before a decision on the level of funding you are eligible to receive can be calculated.

Specific complex and long-term health needs are met by NHS funding, whereas social care needs may be funded by local authorities. It is important to note a vital distinction in that NHS funding is free whilst that which comes from Local Authorities (most often Social Services Department) is means tested. It is entirely possible to receive a jointly funded package to provide for both your health and social care needs.

Some individuals who receive only social care funding might receive it through Direct Payments.  This again intends to allow the individual as much flexibility as possibility in choosing the right care for themselves.

Statutory health funding may be accessed through the Clinical Commissioning Group (CCG) through Continuing Healthcare (CHC).  Eligibility for this type of funding is based on specific objective criteria relating to the intensity, nature, complexity, and unpredictability of your condition and needs. At some stage there is an assessment process involving a Decision Support Tool (DST) which looks at your needs in a range of areas or domains.

Ongoing basic care needs which are considered out of the remit of NHS funding for nursing and specific or complex health care are met by a social care budget, and can include help with things like looking after your home, cleaning, shopping and cooking, as well as personal care and other aspects of supported living. These costs are met by your local authority, and local council websites can offer some specific guidance for your area.

A health and social care assessment can be daunting, and it is likely to lead to a decision that impacts significantly on your life and health. It is possible to challenge any decision that you feel is unfair or wrong, and there are clear routes in place for you to do this.

Statutory funding can help meet any needs either at home or, if it is more appropriate, in an assisted living or care facility. There has been a huge drive towards holistic, individualised care and flexibility in the services offered by care managers, teams and organisations.

Many individuals can find the process of accessing the correct funding for themselves, or a loved one, a daunting process.  There are a range of advocacy services that exist to support people through this process and it might well be useful to consider using their services.

2. Personal Health Budget

A Personal Health Budget (PHB) is an NHS initiative to use the money needed for care in a different way, giving the individual far greater control over the care they receive. This control is largely based upon the freedom and flexibility in how to spend the funding in an agreed way that is best suited to your individual circumstances.

The individual should be central to development of care plans in any situation and all decisions should be led by the person needing support. Good care is well planned, goal-oriented and adaptable, and a thorough appraisal of both needs and desires should inform plans. Care managers and teams are there to ensure that the individual understands all the options available, how they can be tailored to their needs, and how their PHB can be used to best achieve realistic goals and desired lifestyles.

Everyone who has ongoing health care needs which are eligible for CHC funding should now be offered a PHB. In exceptional circumstances, where people are unable to make clear choices for themselves, their care budget can still be met with a PHB through a third party.

3. Self-Funding

There may be limits to the statutory funding you receive that mean you have a shortfall in some care or treatment you want. In theory, any real care needs should be met by statutory funding and the proforma for making these decisions should not allow for interpretation on the part of the assessors. If funding covers, for example, your social care needs but does not stretch to an aspect of rehab or treatment, it may be possible to self-fund for that part of your care. Experienced TCC advisors are available to discuss your care needs wherever your funding comes from, and offer a wide range of services and links to the appropriate specialists for you.

Following Legal Proceedings

For some individuals with injuries arising from an accident, legal action may be appropriate resulting in a settlement or payment covering costs of ongoing health and social care needs, as well as loss of income, adaptations to your home or accessible housing, and other financial impacts. Where your care needs are met through a legal or insurance settlement, this will be treated by CCGs as self-funding.

There may be other additional funding still due to those with ongoing care needs; so there’s no need to compromise on your quality of life. TCC has a great deal of experience working with individuals who have sustained such an injury wherein there might be a compensation claim.  TCC has a close working relationship with a number of expert case managers and legal firms in assisting the injured individual getting the correct amount of financial compensation for their future care,

Getting an Assessment for Statutory Funding

An initial assessment for eligibility for statutory funding can be completed by a healthcare professional or social worker involved in your care. Often this is done in hospital or another care facility, and can be arranged by the staff there. There is often a delay between being medically fit for discharge and having appropriate care in place to go home with, and it is in everyone’s best interests to keep this delay to a minimum. This initial appraisal will trigger eligibility assessment for Continuing Healthcare, NHS funded nursing care, or local authority funded social care.

If the initial assessment finds that the person may be eligible for care funding, a secondary assessment is undertaken, with a more complete picture gained of the person’s needs. At this stage, a local authority care manager with a background in health or social care will become involved and can begin to help make arrangements for the most appropriate package of care to enable a timely discharge from hospital.

If the individual who may be eligible for funded care is already living at home – with or without care – or in a nursing home or other care facility, their GP or social worker, can start the assessment process, or anyone can contact their local CCG directly to ask for an assessment. Guidelines state that the assessments should be performed as soon as possible, and a decision made within 28 days.

Being assessed as eligible for a larger care package or being entitled to more funding towards care should not negatively impact on the care already being received. Having a PHB means that care can come from the same providers, just with a different funding stream.

Personal Independence Payments – PIP (formerly DLA)

Personal Independence Payments (PIP), which replace the Disability Living Allowance (DLA) are not designed to cover care needs and are an entirely separate assessment and undertaking to the funding for care needs. PIP is, however, another state allowance designed to make life easier for people with extra needs, and so it is worth bearing it in mind when accessing the help available to you. PIP requires a separate assessment arranged by your local benefits office and entitles you to support with costs for travel, council tax and more. Being eligible for care funding does not automatically make you eligible for PIP, or vice versa.

After Securing Funding…

Having the funds to get the care and support you’ll need going forward means that you can choose the right care.

TCC is a specialist care provider with a great wealth of experience in providing bespoke complex care packages, often of a health nature, to support individuals in their own homes.  All of our individuals have access to registered nurses employed by TCC to ensure that its staff is fully competent in meeting a range of needs including ventilatory care.  All staff receive highly evaluated training specific to the individual needs of the client they are contracted to work with.

TCC , if appropriate to your situation, can help by assigning you a personal care manager who will help you to assemble a team of specialists and carers to best suit your needs. We take pride in ensuring that everyone we work with is well trained, experienced, and actively interested in their specialty, and in enabling our clients to take an active role in choosing their own team.

Getting you home or to the most appropriate place of care should be the priority of everyone involved in this process, and we believe that arranging a safe, specialist care team is the most important part of that.

TCC helps people living in England, Scotland or Wales to make informed decisions about their care and choose the team that’s right for them. We believe that people should have choices over who they welcome into their homes and about the partnerships they create to cover their care needs, which can be intimate and all-encompassing. TCC are proud of the fact that its services have only ever been evaluated as good or outstanding by the Care Quality Commission (CQC).

We value our employees and have stringent recruitment and training process to ensure we only provide the absolute best care. We offer solutions to cover all the hours you may need care, including on holidays and throughout hospital stays. It’s your life, so you take the lead.

Choosing the right care provider is one of the most important decisions you can make, and our advisors are on hand to answer any of your questions and make every part of your journey as smooth as possible.

 

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Specialist neurological care and support in times of a pandemic

In less than six months the world has changed in so many ways with the arrival of Covid-19. I wonder whether in future we will talk of life pre and post virus times? One thing that is absolutely certain is care and support have had to change to reflect these times.

Many clients went into forms of lockdown before the national lockdown was formally announced by the government. The single biggest risk of infection was often reduced to the necessary workers continuing to come into the homes to provide personal care for lengthy periods of time.

As I am sure many will remember clearly there were national shortages of PPE which was a pressing concern; along with panic buying from antibacterial gels to toilet rolls. Many staff worked tirelessly to keep their clients safe and in the vast majority took every precautionary step. There were real and understandable fears that clients could become infected from staff and equally staff were fearful that they could become infected by going to work. Care staff along with other key workers were the true heroines and heroes of this age. TCC staff exemplified the very best of this spirit; continuing to go to work in all circumstances and safeguarding their clients.

For many clients those early days were amongst the most anxiety provoking of times with media stories being told that people with underlying health conditions might not be admitted to hospital yet alone be able to access ventilatory care. Some of these worst fears did not come to pass for our clients unlike others who were deemed vulnerable with underlying health conditions receiving care in institutional settings.

However, it was indisputable that the safest place was staying at home, with a dedicated team of workers, who minimised the risk of transmission by limiting footfall and the exposure to other people and environments. Very early on TCC took the decision to adopt this approach as a central policy along with not using agency staff who we could not be certain about the risks that they might bring.

We cannot be certain as how the pandemic will progress with the long awaited easing of lockdowns and waiting for medical advances and in particular a vaccine. However, it is certain that there will be future challenges but we can be confident that staff will continue in providing services to the very best of their abilities.

Reg Perrins, Commercial Director

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How the care package is sustained in the event of carer sickness

Our care teams and rotas are set up to be sustainable and self-sufficient. Contingency planning is in place from the outset, with sufficient staff being recruited to ensure the care provision is robust and sustainable regardless of circumstances such as sickness and annual leave.

The aim of this individualised approach with robust sickness policy and procedures is to ensure the totality of the care is provided by staff contracted and known to the client.  This avoids the usage of external agencies, or unknown staff.

Often this requires the team to have more contracted staff than are required day to day to ensure that they can sustain the care provision. The support workers are contracted to work for individual clients, this reinforces the responsibility of the position and the requirement to safeguard the client at all times.

In exceptional circumstances where emergency cover may be required then roving support workers are utilised who have the required skills to support individuals with a range of neurological conditions, in particular that of spinal cord injury, brain injury and including progressive illnesses.

“Eighteen months on and I have a care team of three people working to my personalised rota to fit in with my life requirements. I haven’t seen any agency or unfamiliar staff.  My monthly invoices are correct; my staff are paid on time and correctly.  Long may this continue in making my life hassle free and with a much higher level standard of care.”

Ben, SCI C4/5

(Picture courtesy of Back Up)

 

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Dedicated Care Manager for each package of care

Do you manage a care package that is taking up a huge amount of your time?  Total Community Care can help you with this.  Included in our costings is a dedicated Care Manager for each individual care package.

This means you have one simple and easy point of contact who can help deal with any potential issues very quickly.

We have designed a flow chart detailing the care package which outlines our proven, full process. You can find it in the FAQ section,

Each dedicated Care Manager has overall responsibility for the care package including:

  • Day to day management
  • Liaison with appropriate professionals
  • Identification of clinical issues
  • Rotas
  • Staff support and supervisions
  • Monitoring
  • Assist with individualised recruitment and training

The core strength of our Care Managers is the relationships and trust they build up with our clients and families. They have the time to really understand how a client wants their care package to be managed.

“The TCC Care Manager has always had good communication with our case managers. They always act in a positive and timely manner where issues are raised within the package. I can highly recommend their service and they are one of our two ‘go to’ providers in complex spinal care.”

Case Manager

 

“The support and advice I received from Lana our Care Manager and Paula our Trainer has been brilliant. You can tell they genuinely care about my Dad. To sum it up my Mam and I could not have asked for anything better as a Care team when we selected TCC.”

Robert, Colin’s son – SCI C2/3 Incomplete and Hypoxic Brain Injury

 

More testimonials from our Care Managers.

 

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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.

     

    Like to know more?

    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/

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What are the Specialist Measures for Providing Home Care for our Ventilator Clients?

Going home from hospital with new care needs can be daunting for everyone involved. The intervention that we hear the most questions about is one of the most complex: home ventilation.

This is a naturally emotive issue as breathing difficulties can be some of the most frightening, both to the person having the problem and their families. Added to that is dependence on a piece of equipment that, at first, looks very complicated and technical. Like all technology, however, a little practice and education make its use second nature.

Home ventilation doesn’t have to be daunting, and transitioning from a full-time care setting like hospital or a rehabilitation unit into your home will involve a lot of learning for everyone. Anyone going home with additional needs and their caregivers will be given ample time and support with equipment and care techniques alongside experts in a safe environment.

The aim of community care is to enable people to live safely and comfortably in their own homes, with all their needs supported. As more intensive care needs are being met in the community, we’re seeing huge improvements in people’s quality of life, a reduction in hospital admissions, and an improvement in the long-term health of people with complex needs.

The planning for a complex discharge to home care usually starts in hospital or in a specialist rehabilitation unit, where representatives of all aspects of your care discuss the best way to get you home safely. Total Community Care’s care managers can get involved in this process as early as possible and start to plan for your care. They will work with you to assemble the right team of nurses, carers and other healthcare professionals for your needs once you’re home.

Ventilation at home: the client

Your team both in hospital and in the community will work together to create the best environment for you to come home to. No two people are the same and our assessments, plans of care and the teams we assemble reflect that. When it comes to ventilation and assisted breathing, different people have different needs.

We work with a range of clients; some are more and some less dependent on mechanically assisted breathing, and we work with people needing different ventilation pressures, different oxygen concentrations, different types of mask and a whole spectrum of variables.

nurse attending tracheotomy client at homePeople’s reasons for needing mechanical ventilation can be varied, too. We work with clients with high spinal cord injury, clients with tracheostomies, those who have breathing difficulties due to neuromuscular conditions or chest wall and diaphragm problems, and more.

Conditions needing ventilation may be stable or progressive. The team that Total Community Care help you assemble will include professionals able to continually assess changes in condition or needs and make adjustments or recommendations accordingly.

Ventilation at home: the equipment

The equipment for mechanically assisted breathing can look quite technical at first, but it’s easy once you know how. The most basic requirements for set up at home are a dedicated – and organised – area for the equipment and access to electrical sockets. Access to reliable telephone lines is also essential, for advice and troubleshooting.

Whichever ventilator system is decided as best suited for your needs, consideration will also be given to make sure it can be used outside your home environment in the wider community.  It is important to remember that the equipment is designed to facilitate independence whether for jobs, leisure activities or travelling.  Full support and training will be given to you and your support team to enable this.

When your respiratory needs are stable, the appropriate equipment will be set up at your home. This will include:

  • The ventilator – mains powered with a cable and either internal or external battery options. Some people with significant dependence on ventilators will need to have a back-up machine, or a separate portable device.
  • If you require supplementary oxygen, an oxygen concentrator and spare canisters of oxygen will be supplied, with instructions on restocking and managing medical gases. People with increased oxygen requirements will always be advised to avoid the use of flammable paraffin-based ointments around their mask. Smoking and flames should be strictly avoided around oxygen equipment.

 

illustration of a tracheotomy machine linked up to a patient

  • All the connective tubing required for ventilation – wide bore tubing for between the ventilator and the mask, and narrower tubing to attach oxygen if required.
  • A mask – specially chosen and fitted to meet your needs. You may have a face or nasal mask, or if you have a tracheostomy you may have continuous ventilation given using a special adaptor. Spare masks and tracheostomy equipment should be available. Sometimes masks take a little bit of adjustment to find the most comfortable way to put them on and wear them, and having an experienced team on hand can reduce the risk of getting sores from uncomfortable masks or other settling-in problems with the equipment.
  • Additional equipment might include a suction machine and cough assist device to help clear any secretions. Some people – particularly those who require full-time ventilation and always those with tracheostomies – need the air they receive to be humidified, as ventilation can be drying to the sensitive tissues of the respiratory system.
  • Some special emergency equipment should be available in the homes of people who are ventilator-dependent and your team will be trained for emergencies.
  • Monitoring equipment – small pulse oximeters which clip onto the finger are commonly used for regular assessment of oxygen levels, particularly for people who have problems clearing their chest or who have primary pulmonary conditions.

There are a wide variety of ventilators, and you, your caregivers and team will be able to learn to use your particular model.

Ventilation at home: the team

Whether your ventilation care is entirely met by trained carers and professionals, or whether your family or other informal caregivers want to take a bigger role in the handling of the equipment can influence the way we arrange care.

Living at home with any degree of dependence on a ventilator requires extra thought and care, but can be managed with excellent results. You are likely to need input from lots of different members of a multi-disciplinary team while being stabilised on ventilation in an acute care setting, and some of these professionals will be on-hand for regular check-ups and expert advice.

Some of the people you are likely to have input from when preparing for home ventilation include:

  • Doctors: your medical team will be made up of specialists and juniors – the specialties will vary depending on your medical background and the reason you need mechanically assisted breathing, but will include respiratory physicians. Respiratory specialists will oversee the development of a plan for home care, and will make sure that your ventilation requirements are stable.
  • Physiotherapists: in hospital, the care of non-invasive ventilation is increasingly under the remit of specialist respiratory physiotherapists. They will help assess your needs and make adjustments to your ventilator settings. They can help teach your family and other caregivers about the ventilator upkeep, cough assist devices and suctioning, and advise on fitting and position for the most effective ventilation.
  • Speech and Language Therapists (SALT team) – particularly for tracheostomy-ventilated people, the SALT team assess and manage swallowing and communication difficulties, risks associated with eating and drinking for people who are unable to effectively cough and clear their airways.
  • Nurses and carers – with special training in managing mechanically ventilated people, the nurses and carers are the people you’ll see day-to-day, and will help with any personal care and daily living needs as well as daily management of your breathing equipment.
  • Your family or friends – we value the input of informal carers and the people who are close to you – and anyone who is important in your life. There’s no right or wrong answer for how much your family want to be involved in any care needs you have – we are here to undertake any and all of your care needs, but we understand that sometimes loved ones want to be part of it. That’s up to you.

Total Community Care creates a bespoke service for each of our clients, and we aim to work as closely as possible with other allied health professionals to ensure that your care is seamless and worry-free.

Specific concerns

We understand that going home with mechanical ventilation can be nerve-wracking, but you’re not alone; your specialist team may be able to point you towards local support networks. The internet can be a valuable tool for finding support and information, and there are online support groups for almost every condition and treatment. Remember that the quality of material online can vary, and your support team should be able to help you find good sources for information and help.

Ventilator-dependent people have been able to live safely at home for many years now, improving quality of life and reducing the risks associated with lengthy or repeated hospital admissions. Risk assessment and management is an important part of any care plan and decision making, and is part of an individualised plan.

Management of equipment, safe suctioning and tracheostomy care will all be part of comprehensive hands-on training for anyone involved in this kind of care.

Some of the most common concerns we hear from ventilator clients and their families planning complex home care include:

  • What if the machine fails? This is very uncommon; modern equipment is designed to self-check and alarm early for any issues identified. The machines are designed to be able to cope with a power cut, and people who are entirely dependent on mechanically assisted ventilation will have some back-up equipment for emergencies and transfers. Equipment should have regular maintenance and upgrades, and the equipment provider should arrange this.
  • What do the alarms mean? There are lots of different brands and designs of ventilator, and you and your carers will be trained in your particular model. Some alarms are common to all ventilators, and are straightforward – they alert you in case of high pressures which can mean that a tracheostomy needs suctioned, for example, and they alert you for low pressures which can mean that there’s a leak around the mask – all easily managed.
  • What if I get ill? Your team will be trained to recognise and deal with deterioration, and people with complex care needs at home should have rapid access to advice and support, and hospital admission if necessary. It’s a good idea to take your equipment with you if you have to go to hospital, and if you’re ventilator-dependent you should have a portable device for transfer.
  • What if there’s a problem with my tracheostomy? Carers can be trained in suctioning and clearing techniques, and can also have training in replacing tracheostomy tubes, with a spare (smaller sized) tube available at hand.
  • What do all the settings mean? There is an array of different settings relating to pressures, rates, oxygen flow and so on. These will be set by a specialist and they can give you guidance on what they mean for you – they will also tell you which settings can be changed and which should not be changed without specialist supervision.
  • How will I remember how it all fits together? It will become very familiar to you, but we’ve found that it can be a really good idea, when making adjustments or cleaning, to take a photograph of where everything goes. And if you’re worried, there’ll always be someone to ask, whether it’s your care team, your specialists, or a technical helpline.

Part of your personal care plan includes specific risk assessments, and written plans for any foreseeable potential problems. If you have any worries that you think haven’t been addressed, we’re on hand to discuss and plan for anything that’s troubling you.

Total Community Care works closely with our clients to put together the right team for each person. Our staff receive a training package which exceeds the usual requirements for home carers. We feel that creating an individual team and care package for and with each of our clients means that we get the best people for each placement. It also means that we can tailor the training our staff receive to best suit the people they help to care for. We’re here to make everything that little bit easier for you.

https://erj.ersjournals.com/content/44/Suppl_58/P4701

https://www.nursingtimes.net/clinical-archive/respiratory-clinical-archive/home-non-invasive-ventilation-a-brief-guide-for-primary-care-staff-05-04-2005/

https://thorax.bmj.com/content/thoraxjnl/61/5/369.full.pdf

https://www.hey.nhs.uk/patient-leaflet/home-ventilation-information-for-patients/

https://intensivecareathome.com/mechanical-home-ventilation-guidelines/

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