Total Community Care - Specialists in spinal & neurological care

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

10 Mar

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.

Home non-invasive ventilation: a brief guide for primary care staff.

Non-invasive ventilation at home

Mechanical Home Ventilation Guidelines


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