UK support, helplines and practical help

Living with IPF brings practical problems as well as medical ones: money, energy bills, getting about, travelling, and finding people who understand.

None of this involves rentosertib.

Helplines

Action for Pulmonary Fibrosis runs the only UK support line dedicated to pulmonary fibrosis: 01223 785 725, Monday to Friday, 9am to 5pm, or supportline@actionpf.org. It cannot give medical advice, but it can talk things through and signpost. Its general office number is 01733 839642.

Asthma + Lung UK has a helpline on 0300 222 5800. Its own website gives conflicting hours, in one place 9am to 1pm and 2pm to 5pm and in another 9am to 5pm, so ring earlier in the day to be safe. You speak to an advisor first, who can arrange a call back from a nurse, physiotherapist or dietitian. Email helpline@asthmaandlung.org.uk gets a reply within five working days.

Pulmonary Fibrosis Trust: 01543 442 191 or info@pulmonaryfibrosistrust.org. As well as information, it offers equipment grants towards things like mobility scooters, wheelchairs and daily living aids, and subsidised caravan breaks at Haven Seashore in Great Yarmouth at £25 a night. Pets are not allowed at the caravans.

Chest Heart and Stroke Scotland runs an advice line on 0808 801 0899, Monday to Friday 9am to 4pm. You can also text ADVICE to 66777. It publishes an IPF page and a “Living with IPF” leaflet, and it is the best single resource in Scotland.

Northern Ireland Chest Heart and Stroke: 028 9032 0184, with “Breathing Better” referral services.

Pulmonary Fibrosis NI is a Northern Ireland charity offering respite at Puffin Lodge and links into the European federation of PF patient groups.

Breathing Matters: 020 3549 5979. A research fund based at UCLH that also runs a patient group meeting every two to four weeks.

Carers UK: 0808 808 7777, Monday to Friday 9am to 6pm, for anyone looking after someone else.

Marie Curie support line: 0800 090 2309, for anyone affected by a terminal illness, including at the point of diagnosis. Hospice UK’s care finder shows local services.

Support groups

Action for Pulmonary Fibrosis runs around 90 local support groups across the four nations, including 14 in Scotland, 8 in Wales and one in Antrim, plus several that meet online only. It also runs specific online groups: a carers’ support group on the first Tuesday of each month, Life After Caring for bereaved relatives, a Cymru group, a Scottish rural network, a working age group, and a transplant patients’ group.

Asthma + Lung UK has no pulmonary fibrosis groups of its own and points people to APF. Its online community is the Lung Conditions forum on HealthUnlocked, which has around 59,500 members and is moderated by the charity.

The West of Scotland ILD Support Group meets on the first Wednesday of each month at 2pm at the New Victoria Infirmary in Glasgow. Its number is 0141 211 4387. There are also transplant support groups linked to each of the transplant centres, listed by NHS Blood and Transplant.

Benefits, at 2026/27 rates

Personal Independence Payment (PIP) is for people under State Pension age and is not means tested. The daily living part pays £76.70 or £114.60 a week, and the mobility part £30.30 or £80.00 a week. Claim line 0800 917 2222. In Scotland the equivalent is Adult Disability Payment, at the same rates.

Attendance Allowance is for people over State Pension age, at £76.70 or £114.60 a week. Claim line 0800 731 0122. In Scotland it is Pension Age Disability Payment.

The Special Rules for End of Life are the single most important thing to know about. If a clinician judges that you may have less than 12 months to live, they complete an SR1 form. You then get the highest rate of PIP daily living or Attendance Allowance without an assessment, and the claim is fast-tracked. There is no penalty of any kind if you live longer, which many people do. Ask your ILD team or GP about it.

Blue Badge. You qualify automatically with 8 or more points for PIP mobility, and there is a discretionary route that specifically names breathlessness and SR1. It costs £10 in England, £20 in Scotland, and is free in Wales.

Prescriptions. In England a prescription costs £9.90. IPF is not on the medical exemption list, which is a long-standing frustration. A prepayment certificate caps the cost at £32.05 for three months or £114.50 for a year, and prescriptions are free from age 60. Prescriptions are free in Scotland, Wales and Northern Ireland. The NHS Low Income Scheme can help: 0300 330 1343.

Energy. If you use an oxygen concentrator, join the Priority Services Register with your electricity supplier at thepsr.co.uk. It gives priority in a power cut and advance warning of planned interruptions. You need to register with each supplier separately. The Warm Home Discount is £150 from October 2026.

Home adaptations. A Disabled Facilities Grant can pay for stairlifts, level-access showers and similar work: up to £30,000 in England, £36,000 in Wales and £25,000 in Northern Ireland. Apply through your local council. Some equipment is VAT free, and a Disabled Band Reduction can cut your council tax.

Travel and driving

Flying. Cabin air at cruising altitude is equivalent to about 17% oxygen rather than the 21% at sea level, so a flight can leave you more breathless than usual. The Civil Aviation Authority suggests that being able to walk 50 metres or climb one flight of stairs without severe breathlessness is a reasonable rough screen, and that some people need in-flight oxygen. Airlines require a MEDIF medical form, usually several weeks ahead. Portable oxygen concentrators must be an approved model and you need enough battery for 150% of the flight time. Policies differ a lot between airlines, and the European Lung Foundation’s airline oxygen index is the clearest comparison available. A GHIC card covers pre-existing conditions in Europe, including oxygen arranged in advance, but it is not insurance.

Travel insurance is often the harder problem. The MoneyHelper travel insurance directory and the British Insurance Brokers’ Association both list firms that cover serious medical conditions, and it is usually cheaper to go through one of those than to accept a price from a general comparison site.

Driving. IPF itself is not a notifiable condition. DVLA guidance updated in September 2025 says you may drive and need not tell DVLA unless you have cough syncope (blacking out during a coughing fit), disabling dizziness, fainting or loss of consciousness. If any of those apply you must notify DVLA, and not doing so can mean a fine of up to £1,000. DVLA guidance does not currently set out a position on driving while using oxygen, so ask your team.