Physiotherapist Story – Katy

Katy is a senior physiotherapist with a specialism in respiratory. She is based at Bristol Royal Infirmary, where she is one of the non-invasive ventilation (NIV) leads for the Bristol Home Ventilation Service. Katy has worked in physiotherapy in the NHS for 20 years and has looked after patients with respiratory conditions for over 18 years during this time.

As a member of the HMViP Group, we were keen to find out more about the role of physiotherapy in the treatment of COPD.

What role does physiotherapy have in COPD management?

Physiotherapists aim to maintain holistic function in treating COPD, looking at the whole body to keep patients at the level at which they want to function, for as long as possible. We aim to encourage independence for patients, using physiotherapy to help patients to achieve their goals.

We also work with patients on cough augmentation, trying to improve sputum clearance for patients. This is particularly important with COPD in order to minimise exacerbations, which can lead to hospital admissions.

We try to empower our patients to take control of their chest by clearing it on a daily basis. This means that the patient needs to be aware of when they have a change in their sputum or breathlessness. This is very important to ensure they get treatment quickly if required so that it doesn’t progress into a serious infection and a hospital admission.

We’ll also look for adjuncts for patient sputum clearance. This may include medications, techniques, positioning and some actual adjuncts to clear the chest and manage breathlessness. We’ll demonstrate breathing exercises, different positions of rest, so forward lean or lean against walls to try to pace tasks.

Physiotherapists may also offer guidance on using home NIV most effectively. For example, COPD patients may wake up in the morning and feel breathless after taking off their ventilator. But by keeping the ventilator on for a longer period of time while they do some of their daily tasks, for instance, hair brushing, etc, they can be more independent and are able to control of their breathlessness when they take the ventilator off.

Pulmonary rehabilitation and exercise are also very important in COPD management. The team will adapt this for those patients with more advanced disease where they may be in a housebound environment. In these cases, the physiotherapy team will come up with an exercise plan that is suitable for home.

This rehabilitation is important for all COPD patients to improve quality of life and maintain function. It means helping patients to keep moving and not to fear breathlessness, which is a fear which can take over when you have COPD.

Where would you treat COPD patients generally? Is it a mix of the hospital and home?

In Bristol we have a service which is predominantly outpatient based but we also have a home visit service if a patient is housebound, so we have the ability to review a patient at home.

If a patient is referred for NIV while admitted to hospital, the next appointment will usually be a home visit and that we try to organise this so that we can optimise ventilation at home before bringing them back into the outpatient environment.

Acute ventilation vs home ventilation?

Unfortunately, many patients have had an acute experience of the device. However, it’s important to know that a home ventilator is very different to an acute ventilator.

The acute experience of NIV is not always a positive one and that’s mainly because the individual is very unwell and very frightened, plus they’re in a hospital environment, not at home, all of which can contribute to a negative experience.

The acute devices are often not as individualised as the home devices. The acute ventilator mask is often one style and when a patient is acutely unwell, and feeling very breathless, a tight-fitting mask can be quite frightening.

At the same time, I think it’s important to stress that acute NIV has come a long way and improvements are being made all the time. The machines and interfaces are much better, and some acute experiences are very positive indeed.

What are the benefits patients experience after using home NIV?

Patients generally feel rejuvenated. They often tell us that they didn’t realise quite how unwell they have become. Their chest is clearer, and they often feel that they can also clear it more easily in the morning.

I can think of one patient who said that she had more va va voom, and generally patients have more energy to be able to achieve what they want to do in the day; whether that’s go back to work, achieve hobbies or just their activities of daily life. Symptoms of headaches have usually gone or abated, and they feel that they are much less sleepy than they were. Breathlessness may still be there, but in some instances, patients also report that that has eased and sometimes they have forgotten how unwell they were. By the three-month review, some patients ask if they still need NIV. Quite often those that have done a night without, just to see, have realised that actually no, they do feel better with it. And they put it swiftly back on. And there are those that say that they can’t sleep without it.

Those that are using it for breathlessness, management, particularly first thing in the morning, may find they can achieve more sooner in the day. I can think of another patient who didn’t manage to get dressed until 2:00 or 3:00 in the afternoon but was able to achieve that much sooner in the day, thanks to being ventilated overnight. There are even a few patients that use their ventilator during exercises because they find that it relieves their breathlessness.

For those who feel that they benefit from a rest in the afternoon, we can advise them to use their ventilator to sleep. In the cases where patients are using it for over 10 hours at our service, we often provide a second device and they can keep this downstairs, or by their settee so if they do want to sleep, exercise or do activity with the ventilator, then it becomes a bit easier because it’s not easy to move the machines.

What are the common teething problems of NIV?

A common issue is claustrophobia. I think some patients hope that the mask will be similar to nasal spectacles that they would wear with their oxygen. Unfortunately, the positive pressure needs to have a good seal to be able to get down to their lungs so we can use something like nasal pillows, which is similar, but it fills the whole nostril.

For those with extreme claustrophobia, the mask can feel uncomfortable. And if, like me, they catch flies at night when they’re sleeping, which a lot of us do, it can mean that the air can come out of the mouth, which again means they don’t get good ventilation and they can get a dry mouth.

Claustrophobia can be something that we try and explore with lots of different interfaces. But for some patients, this can become a real barrier.

There will be a small minority of individuals who feel that their sleep is worse with the device and that’s often because they just feel claustrophobic, breathless, or just feel very dry mouthed. However, it would be unusual for us to give a patient a device without a humidifier partly to address dry mouth, but also for secretion management.

Sinusitis can also be quite common, particularly around the autumn months, because the ventilator delivers at room and air temperature. If a room is quite cold, particularly in October before we put heating on at night. This can be very disconcerting and uncomfortable. But there are some things we can do to help such as looking to increase the temperature on the humidifier. We can also provide a hose warmer, which is like a sleeping bag for the hose which we encourage patients to cuddle underneath their covers to keep them warm. In this way, it is delivering more air at body temperature than at room temperature.

How long does it generally take for someone to get used to home NIV?

That is a very individual question because everyone is different and has individual issues with ventilation. There are some patients who take to ventilation like a duck to water, and they can immediately see the benefits and have absolutely no negatives with the device at all.

And they are actually quite frequent. There are some patients that just forget that they have the device on. That’s how used to the device they become, and they are unable to sleep without it. But there are, of course, individuals who it takes longer and that can take from weeks to months to even years.

What happens if a patient doesn’t want to use home NIV?

A small minority of patients who take an informed decision that home NIV is not for them and it’s important that their decision is respected. Our team will try to do all that we can to optimise the ventilator use and their experience by titrating settings and looking at different interfaces to try to improve the environment and support patients where possible but if it’s not for them, we’ll respect their decision.

How do physiotherapists support the patient?

Our role is to reassure and advise the patient to ensure that they have the right setting to get good ventilation for their condition. We’ll also spend time looking at the right interface for the patient and help with oxygen if required.

We’ll go onto the ward a few times to explain how to use home NIV and the ward nurses often support with this. We’ll also provide training to family members that might support the use at home, or personal assistants or carers if they’re in place.

When a patient with COPD has gone home with their ventilation, I’ll normally review them two weeks post discharge, whether that be at home by a colleague or in the outpatient environment.

How do you support carers and the family?

We’ll discuss the treatment with the patient and their family or carer. Somethings it’s actually family members that struggle to get on with the device, particularly partners, husbands and wives who can find it quite challenging because it’s a noise in the room, or they may well have the waste gas aimed at them which can be very challenging.

We’ll recommend earplugs where appropriate and directing the ventilation away from partners wherever possible. Sometimes partners do move to another room to sleep, and we try to support that not happening where possible. However, restful sleep is important for everyone in the family.

The physiotherapy ethos is encouraging independence from the individual. But we will look to the community and other family members to try and support maintaining function in that individual where possible. And so, for instance, particularly with NIV, we’ll make sure that carers have training in use of the device and understand fully when to use, and when not to use, the device so that they can support and advise their partner or loved one, son, daughter, or mother where necessary.

Carers, partners and other loved ones or agency carers are essential to ensuring success with not just with home NIV, but also with physiotherapy where a patient needs assistance.

Can you explain how the ventilation team worked together with COPD patients?

Managing COPD multidisciplinary teams is very important. The team can consist of lots of different health professionals. The patient will have a consultant review by a respiratory physician addressing medication management to ensure that the patient is not at risk of getting unnecessary infections and also to manage their symptoms of breathlessness, for instance,

We also have respiratory nurses who often support from a discharge point of view, and also help to manage breathlessness management. The respiratory nurses will look at other strategies, different potentially to physiotherapy, and they will also consider palliative recommendations, including medication like Oramorph.

Our research nurse colleagues also manage the oxygen for patients on long term oxygen therapy and the respiratory nurses will review and manage this based on blood results to make sure that that the patient has enough oxygen

In addition, we may refer into the community for pulmonary rehab classes, and we’ll do that as part of the NIV review. If the patient is housebound, we may also tap into our community physiotherapy colleagues to adapt the pulmonary rehabilitation for home.

We will also tap into our occupational therapy colleagues to support at home with tasks like bathing if that is becoming more challenging.

We’ll also refer patients for smoking cessation. It is important for patients with long term lung disease, particularly COPD, to give up smoking. Although COPD can’t be reversed, giving up smoking can prevent further damage and, of course, decrease their risk of developing lung cancer.

There are many others, for instance, dietetics and of course, GPs, plus other individuals who help to optimise function for this patient group.

To find out more about physiotherapy and COPD, The Chartered Institute of Physiotherapy have more information https://www.csp.org.uk.