Pulmonary fibrosis services around the UK
Treatment and services for can vary depending on which part of the UK you live in, but they are usually very similar.
Often, centres with expert clinicians work in partnership with local hospitals and GPs to deliver care. Local services are very important as they provide regular, easy to access support to people with pulmonary fibrosis.
We’ve made a list of centres that have some of the key standards recommended by National Institute for Health and Clinical Excellence (NICE) idiopathic pulmonary fibrosis (IPF) guidelines. Idiopathic pulmonary fibrosis (IPF) is pulmonary fibrosis where the cause is not known. NICE do not have guidelines for all types of ILD, but the centres listed do treat different types.
We’d like to keep this list up to date, as we know services are changing. Please email firstname.lastname@example.org if your service is not included here and has two or more of the following:
- a multidisciplinary team (MDT) as defined by the NICE guidelines
- an ILD specialist nurse
- a pulmonary fibrosis support group
Recommended IPF standards by NICE
NICE outlines the treatments and services for IPF that should be available in England. NICE also strongly influences treatment and services in the rest of the UK. Their guideline includes:
- IPF will only be diagnosed by a multidisciplinary team, or MDT. This means that a group of expert health care professionals should decide if someone has IPF, rather than an individual health care professional
- an ILD specialist nurse is available to advise and support people with IPF, their families and carers
- after diagnosis, a health care professional will see someone with IPF after 6 months, then after 12 months - or more often if the condition gets worse rapidly
- after diagnosis, a health care professional will assess the person with IPF to see if they will benefit from pulmonary rehabilitation. This will be tailored for someone with IPF
- a health care professional will discuss the option of a lung transplant within 6 months of diagnosis
Services in England
NICE recommends which treatments should be available on the NHS in England. They have also produced quality standards that are a set of specific, concise and measurable recommendations that are designed to improve care.
NHS England is responsible for organising ILD specialist services across England. It aims to make sure the services are the same and patients are at the centre of planning their care.
NHS England has described the standards and services it expects in centres treating patients with ILD. It wants to have specialist centres to lead on ILD services. NHS England has asked commissioners in each region to decide which centres should lead on ILD services. NHS England has not yet published a list of lead centres.
Services in Wales
The Respiratory Health Delivery Plan has actions for ILD at both a national and a local health board level. The All Wales Medicines Strategy Group (AWMSG) decides what treatment and services should be available in Wales. They usually take into account the decisions made by NICE.
From 2016, AWMSG is funding virtual multidisciplinary team meetings to discuss cases of ILD. This means that while you may be treated by a local consultant, you’ll be diagnosed by a team of experts from across Wales.
Services in Scotland
The Scottish Medicines Consortium (SMC) oversees the approval of medicines in Scotland. The Scottish Intercollegiate Guidelines Network (SIGN) often produce the main guidelines for treatment. These often follow NICE and British Thoracic Society (BTS) guidance. Health Improvement Scotland (HIS) writes guidelines on other standards of care.
Best practice protocols are sometimes developed regionally by the Respiratory Managed Clinical Networks (MCNs). There are 14 MCNs - one in each Health Board area in Scotland. Most of these sit under the Respiratory National Advisory Group (NAG). There is also a Scottish ILD Group made up of clinicians across Scotland that meets twice a year to share and develop best practice informally.
The group is working with the NAG to develop best practice standards for ILD services as part of the proposed National Respiratory Action Plan for Scotland.
Services in Northern Ireland
The Department of Health (DoH) is looking at the NICE IPF guidance and how it can shape services in Northern Ireland. A new strategy for ILD is being developed to address the current variation in services across the 5 health trust areas. All health trusts have agreed pathways with Newcastle hospital in England for lung transplant services.