Journey with the NHS

Respiratory Resource Hub for patients and carers
NHS Highland

If you have a respiratory condition you may have a lot of contact with healthcare professionals and your journey through the NHS may  sometimes seem confused and confusing. This section will give you some information to help you understand and navigate your own journey.  Each of the links below opens in a new window/tab.

Respiratory team roles

The respiratory team varies from area to area, so you may not have access to all the members of the typical respiratory team.  Each of the links below opens in a new window/tab.

Information about the typical respiratory team

Respiratory team roles - My Lungs, My Life

Making the most of your healthcare appointments

To help you make the most of your healthcare appointments it can be useful to do some advance preparation and get ready for your appointment.  Each of the links below opens in a new window/tab.

Information about making the most of healthcare appointments

Making the most of a visit to your doctor - leaflet from Chest Heart & Stroke Scotland (CHSS)

Get ready for your appointment - My Lungs, My Life

What to ask your doctor - NHS UK

Get the most from your medical appointments - British Heart Foundation (BHF) - while not aimed specifically at people with respiratory conditions, this link still provides lots of useful advice

What matters to you - a video about the importance of healthcare staff asking patients "what matters to you?"

 

5 questions to ask at your appointment

Five questions to ask at your appointment, before you get any test, treatment or medicine: Do I need it?  What are the benefits? What are the Risks? How can I improve my condition or health?  What if I don't do anything?

Respiratory, breathing and lung function tests

There are lots of tests which can be done to investigate breathing problems and how well your lungs are working.  Each of the links below opens in a new window/tab.

Information about respiratory, breathing and lung function tests

Tests for diagnosing lung conditions - Asthma + Lung UK

Peak flow - My Lungs, My Life

Spirometry - My Lungs, My Life

Oxygen level tests - Asthma + Lung UK

Imaging scans - Asthma + Lung UK

 

Primary care - your GP and practice nurses

Different healthcare professionals have different expertise and roles.  GPs and practice nurses are generalists - they have to know about lots of different health conditions.  Some specialise in particular conditions, such as COPD or Asthma.  Each of the links below opens in a new window/tab.

When you should go to your GP

If you do not have a history of any respiratory problems like asthma or COPD, you should contact your GP if you have a new cough or a substantial change in the nature of your cough which has lasted for 3 weeks or longer. It is important to do this urgently if you notice blood when you cough, if you have unexpectedly lost weight, or if you feel poorly.

You should also speak to your GP if you have shortness of breath which you feel is unusual, or which limits your ability to perform physical activities such as exercise or housework. You should contact your GP urgently if you feel that your breathlessness is severe, or if you are having difficulty with speaking.  Your GP would also wish to know if you suffer from wheeze or pain or tightness in the chest when you breathe.

If you do have a history of respiratory illness, then you should contact your GP if you feel that your condition has become significantly worse. This could mean that you need extra medication like inhalers or tablets (for instance, antibiotics or steroid tablets).
  • It is best to contact your GP practice in the morning time, so that the practice can assess your symptoms in a timely manner, and so that if you need a prescription, you will be able to find a pharmacy that is open to give you your medication.
  • It is OK to call your practice in the afternoon if your symptoms come on quickly or get rapidly worse and you feel that they cannot wait until the morning.

In the evenings and at weekends, if your symptoms are very concerning to you and you feel you need emergency treatment while your practice is closed, then you can call the Out of Hours medical team on 111. 


What to expect when you contact your GP practice

When you contact your GP practice about your symptoms, you may be given an appointment with a doctor, or with one of the other members of the practice team, such as a nurse with advanced qualifications. It is OK to ask who you are speaking to, and whether they are the right person to help you with your symptoms.

Your first appointment may be in person, or it may be on the telephone or on a video call. If it is on the phone or a video call, then a further appointment for a physical examination may be made later on if you and the practice agree that this would be beneficial. Every GP practice works in slightly different ways, but all will work with you to provide the appropriate care for you.

Smoking
Your GP or nurse will ask you whether or not you have ever smoked. If you smoke currently, you will be offered advice about this, and guidance about how to stop. We know that some people find this conversation difficult, but your GP or nurse should try and communicate with you in a way that you find comfortable. 

Your GP or nurse is not making judgements about you or telling you off when they ask you about smoking. There are many different treatments available on prescription that can help you to stop smoking, and a variety of professionals who can support you while you do so. Stopping smoking is the most important thing you can do to improve most respiratory conditions.

Symptoms
During your appointment with your GP or nurse, they will ask you several questions about your symptoms and how they affect you, and they may examine you. You will also have an opportunity to ask questions of your own. You could be given a diagnosis (this means you are told what is causing your symptoms), or possibly you may be offered reassurance and advice. 

Often, your GP or nurse will need to speak to you on more than one occasion to make the assessment. They may want to arrange some tests, or they may wish to wait and see how your symptoms change over time.

Examples of tests that may be considered are chest x-rays, blood tests, and tests that involve you blowing, such as peak flow tests or spirometry. Your GP or nurse will explain to you why they think you need the tests, and what the tests involve. They may also consider whether you need to speak to a specialist doctor or nurse. They will advise you why they feel that that is important, and how the referral is made. Not everybody who has problems with their breathing or a cough needs to have tests or to see a specialist.

Medication
If you are given a diagnosis such as asthma or COPD, you may be offered medication, though medication is not always needed.

Sometimes medication is given by inhalers, and sometimes in tablets or liquid medicines. Very rarely medicines may also be offered in other ways such as injections, but you will always be told what the medications are for and you will be given opportunities to ask questions about them.

You may be offered a personal management plan that describes what you should do if your symptoms get worse. Some patients are offered "Rescue Medications" like antibiotics and steroids, to keep at home and to take when their symptoms get worse. If you are offered these medications, you will be given clear advice about how you will know when to take them, and about letting your practice know that you have done so. 

Advice
You could also be given advice about:

Find out more in the Wellbeing and Wider Support Networks areas of this resource hub.

 

What happens after you have been given a respiratory diagnosis

It is important that people with respiratory illnesses are offered advice about follow-up care.  Typically, once patients have their symptoms stabilised they are reviewed once a year, but sometimes they will be asked to come back sooner, for instance if the diagnosis is new, if they have had a recent medication change or their symptoms have been very troublesome.

Usually, follow-up care is provided by GP practice nurses, but sometimes patients may need to have ongoing care from specialist nurses or their GP.  The person who is most involved with your care (for example, your GP, nurse or specialist) will advise you on the most appropriate follow-up care in your particular circumstances. You may be offered a personal management plan that describes what you should do if your symptoms get worse. You may also receive advice about vaccinations against illnesses like flu. 

Other sources of information

What to ask your doctor - NHS UK

Annual medical review - My Lungs, My Life

 

Referral from primary to secondary care

Different healthcare professionals have different expertise and roles, and your GP may want to refer you to the specialist respiratory team. Each of the links below opens in a new window/tab.

What happens when you are referred from primary to secondary care - video

This simple video tells you what happens when you are referred to the secondary care Specialist Respiratory Team 

Click on the image above.

 

What happens when you are referred from primary to secondary care - flowchart

What happens when you are referred from primary to secondary care

 

 

Secondary care outpatients - your hospital appointments

If you are referred to a specialist you may be given an outpatient appointment, either to attend in person or (if clinically appropriate) using the Near Me video consultancy system.  Each of the links below opens in a new window/tab.

Information about what to expect at outpatient appointments in Highland

Information needed here - to be written by a consultant and/or video

 

More information about what to expect at outpatient appointments

What happens when you go to see a chest specialist - My Lungs, My Life

How to make the most of a visit to your doctor - leaflet from Chest Heart & Stroke Scotland (CHSS)

Get ready for your appointment - My Lungs, My Life

What to ask your doctor - NHS UK

Get the most from your medical appointments - British Heart Foundation (BHF) - while not aimed specifically at people with respiratory conditions, this link still provides lots of useful advice

What matters to you - a video about the importance of healthcare staff asking patients "what matters to you?"

5 questions to ask at your appointment

 

For more information about using Near Me for consultations, please visit the national Near Me website where you will find an FAQ and technical information.  You can make a test call on the NHS Highland Near Me webpage If you are still unsure about using Near Me, contact AbilityNet for technical support on: 0800 048 7642 during office hours, or email: enquiries@abilitynet.org.uk

Specialist respiratory nurses

If your respiratory condition is quite severe, for example, if you have had an unscheduled hospital admission, you may be referred to one of our specialist respiratory nurses, in the community team.  If you have severe asthma you may be referred to our specialist asthma nurse.  Appointments may be face-to-face, using the Near Me video consultancy system or over the telephone.  

Information about the services provided by the specialist respiratory nurses in the community

Information needed here - to be written by one of the community team

 

Information about the services provided by the specialist asthma nurse

Information needed here - to be written by the specialist asthma nurse

 

Pulmonary rehabilitation

Pulmonary rehabilitation (often called pulmonary rehab or PR)  has been described as the most important intervention for respiratory patients (after giving up smoking), since it can have a greater impact on patients’ lung health, breathlessness and quality of life than any medication.  Each of the links below opens in a new window/tab.

 

How Pulmonary Rehab Can Help You
Animated video all about pulmonary rehabilitation and what it has to offer people with respiratory conditions.

Click on the image above.

 

What is pulmonary rehabilitation (PR)

Pulmonary rehabilitation is a specialised, structured course for people with respiratory conditions run by the NHS Highland physiotherapists. The course provides education about the your respiratory condition and managing breathlessness, it teaches you breathing and chest clearance techniques,  and involves gentle exercises to help build up your fitness so you can complete everyday tasks without getting breathless.

Patients say they have found these classes very valuable and that the course had greatly improved their condition management and breathlessness. 

 

Referrals to pulmonary rehab

If your respiratory condition is having a significant impact on your day to day life, you may be referred for pulmonary rehabilitation.  Face-to-face pulmonary rehab classes are provided across the Highlands - however, due to our geography, there is variation in the length of waiting times for classes, and you may have to travel a considerable distance to attend them.  

 

Making pulmonary rehab more accessible for all those who would benefit

Online pulmonary rehab classes are provided using the Near Me video consultancy system and provide all the same education and exercise opportunities provided by face-to-face classes, and even some time for support and chat among participants. Before joining the online classes you will have a one-to-one session with a respiratory physiotherapist (either face-to-face or online) and we ask that you purchase a pulse oximeter so that you can check your blood oxygen saturation before and during exercise. 

If you are unsure about using Near Me, please contact AbilityNet for technical support on: 0800 048 7642 during office hours, or email: enquiries@abilitynet.org.uk

 

Sources of more information about pulmonary rehabilitation

What is pulmonary rehabilitation - My Lungs, My Life

Essential guide to pulmonary rehabilitation - a leaflet from Chest & Stroke Scotland (CHSS)

Why you should do pulmonary rehabilitation - a video from NHS Ayrshire & Arran

Pulmonary rehabilitation - a video from NHS Greater Glasgow & Clyde

Exercise for severe COPD - a video from NHS Greater Glasgow & Clyde

High Life Highland's Active Health classes - High Life Highland

 

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Calling an ambulance

Being breathless can be very frightening, but being breathless does not necessarily mean you need to call an ambulance.

Deciding whether you should call an ambulance

 There are some very obvious things that members of the public should call 999 for, such as:  

  • Major Trauma
  • Cardiac Arrest  
  • Choking  
  • Stroke 
  • Heart Attack 
  • Collapse
  • Unconsciousness  
  • Breathing problems 

The system is set up to deal with a variety of people including those who are normally fit and well - for these people being breathless (when not exercising) is usually a sign that something isn’t right, and so this triggers an automatic emergency response within the triage system.  

For many people living with long term respiratory conditions, being breathless is a regular if not daily occurrence’ so knowing when to call 999 can be difficult. 
 

Before we get to that, prevention is always better than cure!

Maintain a healthy weight, exercise within your limits, and attend pulmonary rehabilitation sessions, singing groups, peer support groups, and anything that will help you have the best lived experience. Its best you do these as early as possible, often before you feel like you need to; like any kind of exercise, it makes you fitter and better able to cope later when things get a bit tougher. Mental health, mindfulness and relaxation are so important, because anxiety can make you feel breathless too.
 
Ultimately you should speak with your GP or respiratory nurse team to make sure you have a tailored plan for breathlessness before you need to call for help. 
 
This might include a written plan (ACP), and include other things like support with good inhaler technique, pre-prescribed rescue medications, and a plan specific to you, as to when, who , and how to call for help.  Many areas will use a traffic light system to help guide you.
Timely intervention is far better than holding out too long. A classic thing the ambulance crews hear is “I’ve had a slightly worsening cough, darker sputum, and increased breathlessness for a couple of days but I didn’t want to bother my doctor. Then tonight it suddenly got a lot worse, and I didn’t know who to call”. 
Contacting your GP or respiratory nurse team early can prevent the need for an ambulance in the middle of the night, and this is better for everyone. It protects the ambulance service so that they can be there when you really need them, and you are far more likely to get an alternative care plan within working hours because there are often far more services and options available to clinicians.   
 

So, when to dial 999

 
Remember that you can call your GP, phone 111 for advice, contact your respiratory team if you are on a remote monitoring program, talk with third sector like the Chest Heart and Stroke Scotland clinical line or peer group support.
You should save 999 for emergencies - but never hesitate to call when you need to. If you’ve gone through your plan, tried the techniques you’ve been shown, and still dont feel right, or if you become very suddenly ill, the Scottish Ambulance Service will be there for you at anytime day or night. Be particularly aware of things like extreme shortness of breath or difficulty in breathing, chest pain, exhaustion, collapse or anything that is beyond what you are used to dealing with – you are the expert on your own body and your own condition and we will listen to that.  So:
            • 999 for Emergencies, but
            • Your own GP within working hours, or
            • 111 for advice and to schedule an appointment out of hours

What to expect when you call an ambulance 

 
Your call will be taken by an experienced call handler, and based on what you say over the phone, they will triage you and allocate the priority of the response to your call.
 

Occasionally a Scottish Ambulance Service Clinical Adviser, Advanced Paramedic Practitioner or specialist General Practitioner will call you back for a further consultation and they can sometimes update the triage to a faster response, or help you remotely with self care. They can advise, sign post or schedule appointments and this may get you the right  care whilst avoiding the need for an ambulance to attend.

Once an ambulance is with you they will assess you and then discuss care options with you.

Historically ambulance services had very few options, we either decided you were well and discharged you at home, or took you to A&E.

Increasingly SAS clinicians will use BRAN principles (Benefits, Risks, Alternatives, and what is likely to happen if we do Nothing) to guide a person-centred care plan that considers your wishes and the clinical need.

In many areas we have access to hospital at home service, community respiratory nurses, same day emergency care units and direct access to wards, all of which may help our clinicians on the ambulance to get you to the right care and avoid long waits in Accident and Emergency.

All that said, if you are critically unwell, Accident and Emergency may still be the best place for you and so you should listen to the ambulance crews if this is their recommendation.

 

What to expect if you have to stay in hospital

If you are admitted to hospital due to an exacerbation (flare up) of your respiratory condition, it is important that you know what to expect, and that you ask for any services which are not offered to you.  Currently, these notes relate specifically to admissions for COPD.

Please be aware that, due to current pressures, we may not be able to offer all the services detailed below.

Your hospital stay

You've been admitted to hospital with an "exacerbation" or "flare up" of your COPD. This can be a frightening experience for you and your family. We want to do our best to help you with your recovery.

During this admission you should expect to be actively involved in your own care and be offered the opportunity to discuss how you wish to be treated.

Normally, people coming in with COPD can expect to be well enough to go home within five days, although they may go home sooner if they feel well enough. You can expect your nurse or doctor to discuss when is best for you to go home. Staff will talk about planning for going home with you and your family. You may go home on any day of the week.

Treatments during your stay

During your hospital stay there are treatments which you can expect to help you get better and to help you stay well in future.

  1. You should see a consultant doctor. They will be able to assess your condition and make sure the correct treatment is planned and carried out for you.
  2. You should see a respiratory specialist, either a Respiratory Consultant or Respiratory Specialist Nurse. They will help you understand your condition and will be happy to discuss it with you. They will also check that you're on the best treatment.
  3. You should see a physiotherapist who will be able to help you with methods to help your breathing and keeping your chest clear. These methods will also help once you are at home.
  4. If you need it, staff on the ward should offer you help with stopping smoking if you are ready. There is a smoking cessation advisor who can help support you.
  5. Getting the best from your medication is important. Staff should help you with your inhalers.
  6. Staff should discuss the benefits of activity with you and you may be offered a chance to attend pulmonary rehabilitation.
  7. You can expect to get help with understanding how to recognise exacerbations (also called flare ups - times when your condition gets worse). This can be different for everyone and it's useful to be able to discuss it with experienced staff.
  8. Expect staff to talk to you about ways to keep well, and discuss having rescue medications at home in case of future exacerbations.
  9. You should expect your family to have the chance to get involved with discussions with staff. You may find it useful to write down any questions you want to ask or discuss. Staff will be happy to help.
  10. Realistically, you are probably unlikely to be discharged until late afternoon on the day you go home, since you have to wait for your medicines for going home to be ready, along with a letter for your GP with details of your care.

Once you go home

  1. You should receive a telephone call from a specialist respiratory nurse three days after you get home. This is to see how you are getting on after leaving hospital.
  2. Expect to be offered the opportunity to see one of our specialist respiratory nurses within 4 weeks of being discharged.

 

Planning for the future

The time comes when it is important to have conversations about your wishes, hopes and fears for the future and how you would like to be cared for if you become increasingly unwell.  Each of the links below opens in a new window/tab.

Information about planning your future care

Planning your future care - My Lungs, My Life

Anticipatory care planning - NHS Inform - if you have a long term health condition, making an anticipatory care plan can help you get back in control over what's important to you

End of life - Asthma + Lung UK

Anticipatory care plans and end of life care - My Lungs, My Life

Editorial Information

Last reviewed: 25/09/2023

Next review date: 04/11/2024

Author(s): Joanna Gilliatt.

Author email(s): joanna.gilliatt@nhs.scot.

Reviewer name(s): Kevin Patterson.