For the most up to date information, please visit www.HSE.ie
The Covid 19 pandemic has transformed the way medical consultations take place and telephone consultations and video calls are becoming more common.
Remote healthcare offers many advantages as you can speak with a healthcare professional from the comfort and safety of your own home and travel is not required. Family members and carers can be included in the consultation if you wish.
However sometimes, your healthcare team will need a face-to-face consultation to assess your condition fully and sometimes the technology used can be tricky to master. Always ask for help if you need assistance with such consultations.
The Irish Lung Fibrosis Association (ILFA)​, respiratory consultants, and the Irish Thoracic Society campaigned to have pulmonary fibrosis / lung fibrosis / interstitial lung disease formally recognised as an extremely medically vulnerable condition for cocooning. We are happy to report that the guidelines were updated on 24th April and we are grateful to the HSE, Department of Health, Health Protection Surveillance Centre and the Minister for Health for listening to our concerns.
ILFA has put together a document with Frequently Asked Questions and Advice for Lung Fibrosis Patients. Please note that some of this information may change as our understanding of Covid-19 increases. For the most up to date information please see www.hse.ie
Patricia Davis, Clinical Nurse Specialist – Respiratory Integrated Care (RIC), Community Healthcare East (CHEast), Dublin South/Wicklow discusses oxygen therapy during the Covid 19 pandemic. Click here to read more.
Professor Gaye Cunnane, Director of Health and Wellbeing, Royal College of Physicians in Ireland and Professor of Rheumatology, St James’s Hospital and Trinity College Dublin wote this excelent article for ILFA’s Spring 2020 newsletter. Click here to read the article.
ILFA Ireland has received communications from Roche Products (Ireland) Ltd and Boehringer Ingelheim Ltd., the manufacturers of anti-fibrotic medications used in the treatment of Idiopathic Pulmonary Fibrosis, stating that they do not anticipate any issues with the supply chain for medication. In accordance with HSE guidelines, they must stock at least 12 weeks or more of forecasted requirements in Ireland. Both companies will continue to actively assess and monitor the situation to ensure continued market supply of the medicines.
Since the Covid-19 outbreak all clinic appointments have been cancelled. Your Interstitial Lung Disease (ILD) team acknowledges that this creates concerns for some people awaiting results of investigations or Multi-disciplinary team discussions. Similarly, we are acutely aware that some people are awaiting decisions to start anti-fibrotic therapy, if it is deemed appropriate. For those on anti-fibrotic treatment, there is the need to know that blood tests are within normal limits and also to receive repeat prescriptions.
In an effort to address some of these concerns, many hospitals are operating virtual clinics or phone clinics when manpower allows this. The ILD team will review your medical record and may telephone you at home to assess your current health status and discuss a plan of care for you. A letter will be sent to your GP updating them of the Virtual Clinic outcome.
Please keep in touch with your ILD Nurse by phone or e-mail should you have any issues that need addressed but bear in mind that many hospital staff may be redeployed and may not be able to respond to you in a timely manner.
Lindsay Brown, Respiratory Advanced Nurse Practitioner, St Vincent’s University Hospital
ILFA​, respiratory consultants, and the Irish Thoracic Society campaigned to have pulmonary fibrosis / lung fibrosis / interstitial lung disease formally recognised as an extremely medically vulnerable condition for cocooning. We are happy to report that the guidelines were updated on 24th April and we are grateful to the HSE, Department of Health, Health Protection Surveillance Centre and the Minister for Health for listening to our concerns.
The Spring newsletter is availbale to read here. It is packed with news and information on how to stay safe during the Covid-19 pandemic, and has reports of meetings and fundraising events that took place before these activities came to a standstill. We hope you enjoy reading the latest ILFA newsletter.
ILFA has received kind offers of help from volunteers around the country to help pick up prescriptions, groceries and messages and also provide a listening ear for ILFA patients who are cocooning.
Please call Gemma on 086 871 5264 if you need help collecting your groceries, prescriptions etc. or even a chat and we will see if we can match you with a ‘community hero’ or a local vlunteer service. You won’t need to leave the safety of your home.
Headspace The app can be downloaded onto a smart device and you can try it for FREE. At the moment, there are additional free resources in a section on the app called ‘Weathering the storm’ that vary in length.
Mindfulness and Relaxation Centre, Beaumont Hospital– there is a fantastic range of meditations and relaxation exercises on this site so hopefully there’s something for everyone!
Stress Control – This website will help provide you with skills to fight stress (for most of us, a mix of anxiety and depression) and boost your wellbeing.
List of counselling and mental health support services available, including supports for different age groups, mobile apps, phone and online resources.
Advice on how to cope during these challenging times including looking after our physical and mental health
Minding your mental health during Covid
Information and support for people experiencing mental health difficulties
Information line (01) 284 1166 (from 9am to 5pm Monday to Friday)
www.mentalhealthireland.ie or email firstname.lastname@example.org for more information
Free online Stress Control classes available via youtube at 2pm or 8:30pm (Mon and Thursdays x 6 weeks) – started on Monday 13th April
If you are struggling with increased anxiety, feeling depressed or have suicidal thoughts, please seek help and contact your GP or go to your local Emergency Department for help
While this document does not specifically mention Lung Fibrosis Patients on the Extremely medically vulnerable list, respiratory consultants and ILFA recommmends that all lung fibrosis patients should follow this advice. ILFA has engaged with the HSE, Department of Health, Health Protection Surveillance Centre and the Minister for Health to have Lung Fibrosis added to the extremely medically vulnerable group. We will keep you updated.
To help stop the spread of coronavirus (COVID-19) everyone has been asked to stay at home. Please read the HSE Advice on Restricted Movements and Self-Isolation
Trusted websites for up to date factual information about Covid-19 are
Click on the link to read ILFA’s leaflet entitled Weight Management and Nutrition for Pulmonary Fibrosis
Weight gain and weight loss are a balance between the energy taken in and the energy burned. If we consume more energy (calories) than we burn, we will put on weight. To lose weight, we need to consume less energy than our body needs.
A lot of things can act as barriers that prevent us losing weight.
A lack of motivation is probably the most significant barrier to losing weight.
We all go through a number of phases when we are making a change in our life;
The Pre-contemplation Phase during which we are not aware that we have a problem.
The Contemplation Phase when we realise we have a problem and need to make a change.
The Preparation Phase when we begin to look at how we can lose weight, what we need to do, and start think about the pros and cons of different courses of action. A lot of people stay in the preparation phase and never move into the next phase.
The Action phase is the difficult part when you make the changes needed to lose the weight
The Maintenance Phase is when these changes become a part of your normal everyday lifestyle.s
At any stages, you could have a relapse or hit a stumbling block but it is how you deal with the relapse that matters. Do you give up or do you go back to making that change again?
Where are you on this cycle and where do you want to be?
Losing weight is all about eating healthily as well as being active. See the information on exercise.
Skipping meals does not work. If you skip your breakfast, you are more likely too eat more later during the day and to reach for a chocolate bar or packet of crisps.
To be in control of your weight, you need to be in control of your appetite, so you should eat regularly and have a routine.
Portion sizes are getting larger and therefore we are taking in more calories. You should pay particular attention to the portion sizes of starchy foods like bread, potatoes and pasta.
Be careful of the portions of high fat foods and high in calorie foods such as cake, biscuits, ice cream, and crisps and any other “treat” foods. You should be careful with the amount of butter you put on your bread, and the amount of fat on the edge of meat, chicken skin, cream, mayonnaise, and chips.
This is an easy way to reduce your calorie intake; use a sweetener instead of sugar if you need to.
Use diet fizzy drinks if you must have a fizzy drink, they have no calories. Water is better!
You should aim to eat five portions of fruit and vegetables every day.
Fruit and vegetables are rich in vitamins and minerals that are essential to protect our body. They are high in fibre so they are filling too, and can prevent you reaching for a bar of chocolate and other treats.
You should try to incorporate some fruit and vegetable into each meal, for example put a bit of banana into your cereal, add a bit of fruit to a diet yoghurt or put extra salad vegetables in your sandwich.
Make sure that you get plenty of calcium. Low fat milk may even help with weight loss. Recent research has shown that people who don’t have enough calcium in their diet, have more difficulty losing weight.
It is NOT true that there is a connection between dairy products and sputum.
You should aim for three portions of dairy products a day for example one medium size glass of low fat milk, a pot of diet yoghurt, or an ounce of reduced-fat cheese.
If you are on steroid medicatiton, you will need extra calcium. Ask your doctor if you need a calcium supplement.
Alcohol is very high in calories and it also increases your appetite – a double whammy!
Cut back as much as possible and try to have no more than half the recommended units a week – 21 for a man and 14 for a woman.
Did you know that a quarter bottle of wine contains between 2 and 3 units of alcohol?
Most of us don’t just eat when we are hungry, we eat because we are bored, or because we’re upset, or the people around us are eating.
For more information and helpful recipes see;
The Irish Nutrition and Dietetic Institute at http://www.indi.ie/
The British Dietetic Association at http://www.bdaweightwise.com/
The role of the Social Worker varies depending on what the setting they are working in, but what connects them all is the approach they take to problem solving, and to helping patients and families cope with various issues that can be challenging and life-changing.
Social Workers take the biological, psychological and social needs of the patient into account.
The biological aspect involves asking how lung fibrosis will affect a person’s ability to interact with their physical environment. Are practical supports going to be required in the home? Will the hands-on support of family and friends be needed? Will community support services going to be needed?
The social worker also has a role in identifying information resources that might be useful for patients and families trying to cope with a particular issue.
The psychological aspect deals with the person’s emotional wellbeing. Having a chronic or debilitating illness such as lung fibrosis, can present many challenges so looking at the person’s coping mechanisms and how they are doing is important. Depression is common with lung fibrosis, and monitoring patients responses, stress levels and mood might also be needed.
Patients undergoing transplant assessment and those on the transplant list also face a whole range of uncertainty for example, being accepted on the transplant list, getting a donor match, waiting times etc. which can be very stressful and social works can help patients with their concerns.
The social aspect focuses on identifying how particular problems affects our relationships. Maintaining social relationships can be particularly challenging if you are not able to go continue to meet friends or go to social events. Relationships within families may have to be redefined especially if the patient can no longer work due to illness. This can have a profound effect on a person’s self-esteem.
As well as helping patients deal with the emotional aspects of an illness, the social worker can help with the practical side of things, for example with social welfare services, with housing and housing alterations, and with activities of daily living. All of these things can be affected by having a chronic condition like lung fibrosis.
By putting all of these perspectives together, the social worker can get a clear understanding of what important issues need to be addressed for individual patients.
Essentially the Social Worker has two main roles;
In the hospital setting, the social worker will carry out a psychosocial assessment to establish how the patient is coping; what are the issues and problems they are currently facing; what are the priorities for them to deal with, are there any issues that might benefit from counselling or if there are any practical issues that need to be addressed.
Social Workers also act as patient advocates, for example if you are having difficulty with a housing grant sometimes a letter from the Social Worker can help to speed things up. The Social Worker can also provide a link to community services like home help services, home nursing, care attendants, if and when they are required.
The Social Worker in the hospital is available both to in-patients and out-patients. Ask your medical team to put you in touch with the social worker if necessary.
Public physiotherapy services may be accessed through your local health centre or your GP can make a referral to the Physiotherapy Department for you.
Private physiotherapy sessions usually cost in the region of €50 to €60 per session.
A physiotherapist can assess your movement abilities and make recommendations to help you maintain and restore maximum movement and functional ability. Specific exercises may be recommended to improve your physical fitness.
Physiotherapy aids and appliances (rollators, bed supports), exercise aids (exercise bicycles, pedal exercises) and breathing aids (spirometers) may be prescribed to assist your mobility and breathing function.
See also the section on Exercise, Oxygen Use and Conserving Energy.
ILFA has useful exercise resources that were developed specifically for lung fibrosis patients. See the section on Living Well with Lung Fibrosis.
If you have lung fibrosis, you may need extra oxygen to supplement the oxygen in the air. Oxygen is a gas vital to every cell in our bodies. When we breathe, we take in oxygen, but a person with lung fibrosis, may have to make an extra effort to get the oxygen they need from the air causing breathlessness and tiredness. Breathing air with a higher concentration of oxygen (for example using medical oxygen) can reduce these symptoms and improve your qualiy of life.
Your consultant will prescribe supplementary oxygen and advise you on how long you will need to use it each day, if they think you need it. Always follow your doctor, nurse and physiotherapist’s advice when using oxygen.
Usually your medical or nursing team will make the arrangements for the oxygen equipment to be delivered to your home. The engineer will explain to you, and your family, how to use oxygen and can answer any questions you may have. You can also contact your oxygen supply company for advice at any stage if you have questions.
Here’s a video about 3 patients sharing their experiences of using medical oxygen.
We hope you find it useful.
The two suppliers of medical oxygen in Ireland are;
Oxygen equipment consists of an oxygen concentrator, oxygen cylinders and portable oxygen.
The home oxygen concentrator, which runs off the electric supply in your home, filters oxygen from room air. This oxygen is then delivered by plastic tubing to a mask or nasal cannula – a small tube for breathing oxygen in through the nose. You will also be supplied with cannulae on a regular basis. The cannula should be replaced every month and the prongs washed daily in hot soapy water. Ask your engineer for extra length of tubing if needed.
You can also ask for a humidifier, which will make the oxygen less dry in your nose. The humidifier must be emptied and cleaned each day in hot soapy water and rinsed thoroughly to prevent bacterial contamination.
Your oxygen concentrator should be monitored and maintained regularly by your supplier to make sure it is always operating effectively.
Ask your supplier for a spare dust filter for the concentrator, so that this can be used when the other is being cleaned.
The oxygen concentrator is about the size of a portable heater and if you are using it for extended periods each day you will probably notice a rise in your electricity bills! It might be worth contacting your local health centre to see if there is any reimbursement scheme for this extra cost in your local area.
The Electricity Supply Board should be notified if you are dependent on home oxygen via an electrical concentrator. You can register your personal details with the ESB by completing a Priority Support Registration Form. This information is confidential and will enable the electricity supplier to identify customers who are dependent on electrically powered medical equipment and who are vulnerable to supply interruption. In the case of loss of electricity, the ESB will then prioritise your local area for electrical power restoration. When there is a planned electrical interruption, the electricity supplier will contact priority support customers to inform them in advance of the date and the likely duration of the disruption of the electricity supply.
To register as a Priority Support Customer contact
(1) ESB/Electric Ireland Tel: 1850 372 757
(2) Airtricity Tel: 1850 812 220
(3) Bord Gáis Tel: 1850 632 632
A back up oxygen cylinder will be supplied aloong with your home oxygen concentrator for use in case of an emergency, for example a power failure or a concentrator malfunction. The engineer from the oxygen comany will show you how to use the oxygen cylinder.
You will also be supplied with portable oxygen cylinders for use when you want to go out and about, go to work, do some shopping, visit friends or do a little gardening or walking/exercising. A bag is supplied with the portable cylinders so it can be carried on your shoulder or worn as a back pack.
It is useful to time yourself to establish how long it takes you to consume a cylinder of oxygen, so that you will know how many cylinders to bring with you when you go out.
It is a good idea to ALWAYS bring more than one portable cylinder out with you if you are going anywhere by car just in case you get stuck in a traffic jam or there are trafic diversions in place.
You should also carry a replacement battery for the conserver with you when you are using portable oxygen.
Most of the cost of the oxygen prescribed for you will be covered by the DRUGS PAYMENT SCHEME. This scheme ensures that no individual or family need pay more than €144 per month on prescription medicines including oxygen.
Your local HSE centre will advise you how to claim for this.
It is possible to go on holiday even if you are dependent on medical oxygen. Talk to your doctor before you travel to make sure that you are well enough and to organise an oxygeen prescription.
If you are travelling within Ireland, your oxygen supplier will try to arrange delivery of oxygen equipment to most locations, once proper notice is given. Contact your oxygen supplier at least 2-3 weeks before travelling.
If you are travelling abroad your oxygen supplier should be able to help you organise this.
Contact your oxygen supplier at least 6 weeks in advance of travelling.
Most airlines can supply oxygen on board the aircraft, but there is usually a fee for this.
Contact your airline to check the availability and cost of oxygen before you book. Also check if they have restrictions on carrying oxygen on board the aircraft.
Order oxygen when you are booking your flight. You will need to provide a prescription from your doctor to do this.
Application forms for the EU Disabled Person’s Parking Card are available from The Disabled Drivers Association, Ballindine,Claremorris, Co. Mayo. The Association can also be contacted by calling 094 936 4054 / 9364 266
The Disabled Person’s Parking Card entitles you to park at parking meters and in disk parking areas without charge and without a time limit.
It also entitles you to park in assigned parking spaces that have the wheelchair symbol painted on the ground or in a bay where the symbol is displayed.
You do, however, have to pay the parking charge in private car parks.
The parking permit can be displayed on your own car or on the car of the person driving you.
The parking card is valid in all member states of the European Union.
Your local council may consider a request for a DISABLED PERSON’S PARKING BAY outside your home if certain conditions are met. To obtain full details of the requirements contact the Traffic Department at your local county council.
Wheelchairs are available from The Irish Wheelchair Association Head Office, Blackheath Drive, Clontarf, Dublin 3. Call (01) 818 6400
Avoid ‘off-the-peg’, cheaper wheelchairs as these are less comfortable for the patient and heavier for the carer, when it comes to putting them into a car. The better wheelchairs are made to measure patient’s back and legs. Ask for a wheelchair bag to carry items and a cape for patient in case it rains, while you are out. Ask about funding the wheelchair through the Health Board or the VHI. Generally, severly disabled lung fibrosis patients will not be able to mobilise wheelchairs on their own, even the electric variety, especially since they have to manage portable oxygen cylinders at the same time.
Severely disabled lung fibrosis patients may not be able to climb stairs. Stairlifts can be installed in about 3 hours. For a list of suppliers of stairlifts see the ILFA Directory of Services.
You may be entitled to a Disabled Persons Grant to assist with the cost of installing a stairlift. Contact your local Health Authority office for an application form. If you do qualify for a grant an occupational therapist will first have to provide a report and you will be required to submit two quotations.
The Motorised Transport Grant is a means tested HSE payment for people with disabilities who need to buy a car. This payment is also available to people who need to have a car adapted in order to enable them to drive and, as a result earn a living. Certain conditions must be met to qualify for the grant.
To apply for a motorised transport grant contact your local HSE office.
The Mobility Allowance is a means tested monthly payment payable by the HSE to people between the ages of 16 and 66 years who are unable to walk or to use public transport and may need to make occasional taxi journeys. A lower rate is payable to people availing of the Disabled Drivers and Disabled Passengers Scheme. Apply to your local HSE office.
To get the Household Benefits Package, you must:
People aged under 70
If you aged under 70 and you are living with your spouse, cohabitant or civil partner, you can get the HBP if you are getting a qualifying social welfare payment and:
There are 2 allowances in the Household Benefits Package:
If you have an electricity and natural gas supply, you must choose between the Electricity Allowance and Gas Allowance. You can choose only one.
Once you qualify for the Household Benefits Package, you can get a Free Television (TV) Licence from your next TV Licence renewal date. To get your Free TV Licence, you must select the Television Licence option on the HBP form when you apply.
The weekly rate of payment is currently €33.00, usually payable from September to April.
People getting certain social welfare payments can get their Fuel Allowance paid in two lump sums. The first lump sum is normally paid in late September and the second payment is in January.
Only one Fuel Allowance is paid to each household.
Individuals aged over 66 years who receive social welfare pensions and live alone, may be entitled to a small supplementary payment (€7.70 per week).
Free travel is available to individuals aged over 66 years. The scheme has been extended to cover travel to Northern Ireland.
Many banks have offers specifically for individuals aged over 66 years. Some offers include free transaction fees, free maintenance fees. Check with your bank for more information.
Dept. of Social & Family Affairs 1890 500 000 www.welfare.ie
Age Action (01) 475 6989 www.ageaction.ie
Carer’s Association 1800 240 724 www.carersireland.com
Citizens Information 1890 777121 www.citizensinformation.ie
Energy Action (01) 454 5464 www.energyaction.ie
A medical card entitles the holder to free GP services, approved prescribed drugs and medicines, all in-patient public hospital services, all out-patient public hospital services, dental services, ophthalmic services and aural services.
An application form for a medical card can be obtained from your GP, local health centre, or it can be downloaded from the HSE website,at www.hse.ie/en/Forms
If you do not qualify for a full medical card, you may be entitled to a GP visit card.
You can download the application from the HSE website www.hse.ie/en/Forms or, alternatively, you can call the HSE information line (Monday – Saturday 8am to 8pm) Tel: 1850 241 850.
Under the Drugs Payment Scheme, individuals and families who do not hold a medical card do not have to pay more than €100 per calendar month for approved prescribed drugs, medicines and medical appliances, including medical oxygen concentrators.
An application form for the Drugs Payment Scheme can be obtained from your local pharmacy or your local health centre.
Once your application has been processed, you will receive a plastic swipe card with your personal Drugs Payment Scheme number. This card should be given to your pharmacist each time you get your prescription filled. Over-the-counter medicines or products are not covered by the Drugs Payment Scheme.
It is a good idea to keep all your pharmacy and oxygen receipts in order to claim tax relief using the MED 1 (Health Expenses Claim) at the end of the year.
Irish residents are entitled to get healthcare through the public system in countries of the European Union, European Economic Area or Switzerland, if you become ill or injured while on a temporary stay there.
Contact your local health centre for an EHIC. You can also apply for the card on-line at www.ehic.ie/apply.htm
Public Health Nurse visits can be organised through your local health centre. This can be activated by the hospital or by your GP.
Illness Benefit is a weekly payment made to people who are unable to work due to illness, are under 66 years of age and satisfy certain PRSI contribution conditions. For details of these conditions see the website of the Department of Social and Family Affairs www.welfare.ie. You will need to submit weekly medical certificates to the Department unless they advise you otherwise. These certificates are available free of charge from your GP.
If you do not satisfy the PRSI contributions for Illness Benefit you may be entitled to a Disability Allowance. This is paid weekly to people aged between 16 and 66 who have a disability that is expected to last at least one year. It is means tested and the patient must be medically suitable. For more information about this allowance and how means are calculated see the website of the Department of Social and Family Affairs www.welfare.ie
Invalidity Pension is payable to people who are permanently unable to work because of an illness or disability and satisfy the PRSI contribution conditions.
If you are
you may qualify for this pension.
Contact the Department of Social and Family Affairs www.welfare.ie for information on how to apply.
If your income from your Social Welfare or HSE payment is too low to meet certain special needs (e.g. exceptional heating requirements due to ill-health, or special dietary requirements due to a medical condition), a weekly supplement may be available. You will need to provide medical evidence of your condition before your application can be processed.
Apply to your local Social Welfare office or the Department of Social and Family Affairs, College Road, Sligo.
Call 1890 50 00 00
An Exceptional Needs Payment may be approved by the HSE for a one-off exceptional expenditure, which a person could not reasonably be expected to meet out of their weekly income. People eligible to apply for an exceptional needs payment would normally be in receipt of a social welfare or HSE payment.
Contact your local health centre for more details and an application form.
Home Help assistance can be organised through your local health centre.
An initial assessment of your needs will be carried out to determine what activities you need assistance with.
Some of the cleaning duties that may be carried out by a home-care worker include; general cleaning, ironing, making beds and vacuuming.
The home-care worker may also assist with washing, dressing and food preparation.
You will be able to arrange suitable days, times and duties with your home-care worker once you have been approved for home help services. You may be asked to make a small weekly contribution towards the cost of this service.
It is recommended that you consult an occupational therapist before making any alterations to your home. An occupational therapist will assess your immediate and long-term needs with regard to your ability to function independently and perform daily tasks in your living and working environments.
He or she will visit your home or work place and help you modify your living space to best suit your needs. The occupational therapist will also be able to advise you about appropriate equipment and appliances, including stairlifts, bathroom devices, etc., to improve your comfort and independence.
You can arrange to see a community occupational therapist through your local health centre. Ask your GP for a referral. However, it may take some time to arrange an assessment by a community occupational therapist and you may wish to engage the services of a private therapist at your own expense. A list of registered occupational therapists in private practice is available from their professional organisation. The Directory of Occupational Therapists in Private Practice can be viewed on the organisations website www.aoti.ie
A grant is available for home modifications recommended by an occupational therapist. Home modifications covered by this grant include; stairlift installation, bathroom modifications, widening of home entrances/exits to enable wheelchair access and the provision of ramps. Contact your local HSE office for more information and an application form.
This can be very helpful if you are on your own for any length of time.