Clinical View – 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 and restore function in treating patients with COPD. Considering holistically their whole body whilst considering the individual to aim to keep patients at the level at which they want to function, for as long as possible. At the heart of physiotherapy treatment is the patient’s own involvement in their own care. We aim to encourage independence for patients, so using physiotherapy management, education and confidence-building to help patients to achieve their goals.

We assist patients with cough augmentation, trying to improve sputum (Phlegm) clearance. This is particularly important with COPD to minimise infection and exacerbations (flare ups), which can lead to hospital admission.

We try to empower our patients to have more awareness of their condition and symptoms. An example of this is through daily preventative chest clearance allowing for a familiarity of what is normal for the individual and to pick up changes quickly to allow for early management of infection so that it doesn’t progress and need a hospital admission.

Physiotherapy may provide adjuncts for patient sputum clearance and breathing techniques or positioning to assist with breathlessness or hyperventilating. For example, to manage breathlessness we may have different positions of rest, for example, forward lean in sitting or leaning against walls to try to pace tasks.

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

Pulmonary rehabilitation (PR) and exercise are also very important in COPD management. The team can adapt this for those patients with more advanced disease where they may be housebound or access the PR via a virtual platform.

This PR is important for all COPD patients as it can improve quality of life, maintain function and reduce hospital admissions. It helps patients not to fear breathlessness, as this fear can take over their lives and stop all activity in case it causes breathlessness.

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

In Bristol we have a Home NIV service which is predominantly outpatient based but we also have a home visit service if a patient is bedbound. For patients who are unwell in hospital and unable to wait for HMV we will set up the NIV device on the ward, so they can become used to the device with the best settings for them prior to discharge.

If a patient is referred for HMV while admitted to hospital, the next appointment will usually be a home visit and 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 (in hospital) of the NIV device. However, it’s important to know that a home NIV device may be very different to acute NIV device.

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

The acute NIV devices are often not as individualised as the home devices. The acute NIV mask is often one style so may not fit as well 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 over the years and improvements are being made all the time. The machines and interfaces are much improved, and some hospital experiences of NIV are very positive indeed.

What are the benefits patients experience after using HMV?

Patients generally feel rejuvenated. They often tell us that they didn’t realise quite how unwell they had become. Their chest may feel clearer, and they often feel that they can also clear phlegm more easily.

I can think of one patient who said that she had more va va voom, and patients report having more energy to be able to achieve what they want to do in the day; whether that goes back to work, achieve hobbies or just their activities of daily life. Symptoms of headaches have usually gone or improved, and they feel that they are much less sleepy. Breathlessness may still be there, but in some instances, patients also report that this has eased and sometimes they have forgotten how unwell they were when they started NIV. By the three-month review, some patients ask if they still need NIV. Quite often patients that have done a night without the device, 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 now.

Those patients that feel HMV aids breathlessness management, particularly first thing in the morning, may find they can achieve more activities sooner in the day. I can think of a patient who didn’t manage to get dressed until 2:00 or 3:00pm but was able to achieve this much earlier in the day, when using HMV overnight. There are even a few patients that use their HMV during exercise because they find that it relieves their breathlessness and enables them to do more.

For those patients who feel that they benefit from a rest in the afternoon, we can advise them to use their NIV to nap. In our home HMV service when patients are using NIV for over 10 hours, we often provide a second HMV device and they can keep this downstairs, or by their settee so if they do want to nap, exercise or do activity with the HMV on, it becomes easier because they don’t have to move one device around.

What are the common teething problems of HMV?

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 into their lungs but we can try nasal pillows, which is similar, but it fills the whole nostrils.

For those with extreme claustrophobia, the mask can feel uncomfortable and quite alien sleeping with something on your face.. And if, like me, they sleep with an open mouth when they’re sleeping, it can mean that the air can come back out of the mouth, losing the pressure and they can experience a dry mouth.

Claustrophobia can be something that we try and improve with lots of different interfaces and advice. But for some patients, this can become a real barrier. I try and remind patients to see the HMV device as something protecting them and their breathing rather than the enemy.

There will be a small minority of individuals who feel that their sleep is worse with NIV and that may be because they feel claustrophobic, breathless, or have a dry mouth. However, by adding a humidifier can help dry mouth and aid secretion management.

Sinusitis can also be quite common, particularly around the autumn months, because the HMV delivers pressure room temperature. If a room is quite cold, particularly in October before we all put the heating on at night. This can be 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 and we encourage patients to cuddle the hose underneath their covers to keep it warm and warm up the air coming out.

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

That is a very individual question because everyone is different and each has individual issues with HMV. There are some patients who take to HMV 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 HMV?

A small minority of patients will take an informed decision that home HMV is not for them. It is important that their decision is respected as long as they understand the risks of not using HMV and all attempts by the HMV team to support the use of HMV have been considered. 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. Sometimes patients may not get on with HMV on the initial trial but months or years later as their symptoms change they may be successful on a second trial.

How do physiotherapists support the patient?

Our role is to reassure and advise the patient so that they can become independent with the HMV, To ensure that they have the right settings to get good ventilation for their condition. We’ll also spend time looking at the right interface for the patient and help with oxygen entrainment if required.

We’ll go onto the ward a few times to explain how to use home NIV and the ward nurses often support 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 NIV, I’ll normally review them two weeks post-discharge, whether that be at home by a colleague if they are now housebound or in the outpatient environment.

How do you support carers and the family?

We’ll discuss the HMV with the patient, family or carer. Sometimes it’s actually family members that struggle to get on with the HMV, 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 expiratory waste gas from the mask aimed at them which can affect their sleep.

We’ll recommend earplugs where appropriate and directing the waste gas away from partners wherever possible. Sometimes partners move to another room to sleep, and we endeavour to improve mask fit and limit alarm noise to enable them to move back into the same room as their partners. Restful sleep is important for everyone in the family.

The role of physiotherapy is to encourage independence for 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 HMV, we’ll make sure that carers have the training and completed competency 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. We currently provide virtual training to allow for easier access to training, for example, night staff.

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

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

When managing COPD the multidisciplinary teams is very important. The team can consist of different health care professionals. The patient will have a consultant review by a respiratory physician addressing medication management to ensure that the patient’s condition is optimised, reducing the risk of exacerbation, infections and also to manage their symptoms of breathlessness, , There may be involvement from palliative care if desired by the patient to assist with symptom management and advanced care planning.

The respiratory/NIV nurses support the patient at discharge from hospital and help with breathlessness management. The respiratory nurses will also consider palliative recommendations, including medication like Oramorph.  They manage the oxygen for patients on long term oxygen therapy will review and manage this based on blood results to make sure that the patient has the correct oxygen prescription.

In addition, we refer into the community for pulmonary rehabilitation classes, and we’ll do that as part of the HMV review.

We will also refer into our occupational therapy colleagues to support independence at home, for example, with equipment and advice to manage washing and dressing if that is becoming more challenging.

If a patient has concerns over their swallow we may refer to the Speech and language team for assessment and advice, Additionally, we may refer to a Dietician if for example a patient has lost weight and may need dietary advice and ort supplements.

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 decrease their risk of developing lung cancer.

There are many other health care professionals who assist with the overall management in COPD, to optimise function for this patient group.

To find out more about physiotherapy and COPD, The Chartered Institute of Physiotherapy have more information