Analytes

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Benzylpenicilin (Penicillin G)

Gentamicin

As of 2nd December 2024, this test will be provided on the Clinical Biochemistry analytical platform, however clinical advice will still be offered by the Microbiology service 0117 4146222. Please see updated test information Gentamicin test page link.

Isoniazid (+ N-Acetyl-Isoniazid)

Sulphamethoxazole in (Co-trimoxazole)

Trimethoprim in (Co-trimoxazole)

Vancomycin

As of 2nd December 2024, this test will be provided on the Clinical Biochemistry analytical platform, however clinical advice will still be offered by the Microbiology service 0117 4146222. Please see updated test information Vancomycin test page link.

Antimicrobial Reference Laboratory Contact Details

Antimicrobial Reference Laboratory
Level 2, Phase 1, Pathology Sciences Building
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB

For General Enquiries and Results:

Telephone: 0117 4146269 or 0117 4146220
For Clinical Advice: 07802 720900
Email: arlenquiries@nbt.nhs.uk

Laboratory Hours

Monday to Friday 09:00 - 17:15

Saturday 09:00 - 12:00

Cellular Immunology / Immunophenotyping Laboratory

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Leukaemia and Non-Hodgkin Lymphoma Diagnosis and Monitoring

The laboratory provides a comprehensive service in the investigation of Leukaemia and Non-Hodgkin Lymphoma. Immunophenotyping provides additional information to morphology and cytogenetics in the diagnosis, classification and monitoring of these disorders.

HIV Monitoring
Immunophenotyping is used serially to monitor CD4 levels.

Investigation of Cellular Immunodeficiency Disease
Wrong choice of tests, especially in the paediatric setting, can mean rare cases of immunodeficiency are missed. Vital information includes type and site of infections, family history, other pathology results, X-rays and clinical features. Please refer to the Clinical Immunologists: ward or clinic referral is the ideal.

  • Immunophenotyping identifies numerical defects in lymphocyte subsets, inherited or acquired, and are indicated in cases with recurrent viral, fungal or mycobacterial infection.
  • PNH Testing performed on peripheral blood samples looking for the absence of GPI-linked proteins on neutrophils, monocytes and red blood cells.
  • Functional Leucocyte Assays

These assays are technically complex and require prior discussion with the laboratory. Abnormalities are rare, most commonly due to poor sample quality, testing during drug therapy or intercurrent infection.  Abnormal findings should always be confirmed on a second sample.  True abnormalities may need further, more specialised tests to specify the disorder.

  • Lymphocyte function studies are indicated in cases of recurrent viral, fungal and mycobacterial infections in whom no numerical lymphocyte defect has been defined. The investigation provides a measure of lymphocyte activation. Lymphocytes are cultured for 5 days with mitogens which mimic antigen activation.
  • Neutrophil function studies screen for defects in the metabolic burst and adhesion molecules and are indicated in cases with recurrent fungal or bacterial infection with a normal neutrophil count (>1x109/1).A normal result excludes major defects in neutrophil function.

 

Quantiferon Assay

The QuantiFERON-TB test is an interferon gamma release assay (IGRA) used for the diagnosis of latent Tuberculosis (TB). The assay requires special blood tubes and has specific sample handling requirements. The laboratory can issue guidance and sample tubes to requestors. Interpretation of the result needs to be in the context of clinical history and other laboratory and clinical investigations.  The antigens used in the test are absent from all BCG vaccine strains of TB and from most known non-tuberculoid mycobacteria, it is possible to have a reactions to M. kansasii, M. szulgai and M. marinarum.  If such infections are suspected, alternative testing should be sought.

The QuantiFERON-TB test (and other TB IGRAs) may give false negative results in immunosuppressed patients. The laboratory provides a positive control tube for all tests to ensure the validity of results. Where the positive control fails (indeterminate result) the laboratory may suggest alternative testing. Please see guide below for interpreting indeterminate results.

Guide to interpretation

•    Negative: A negative result indicates that latent infection with M. tuberculosis is NOT likely. This result does NOT exclude active TB infection. The investigation of suspected active TB requires clinical, radiological and microbiological assessment.
•    Positive: A positive result is consistent with latent or active TB. This result may be due to exposure to M.tuberculosis complex (except M. bovis BCG), M. kansasii, M. szulgai or M. marinarum.  IGRA should not be used for the investigation of suspected active TB. The investigation of suspected active TB requires clinical, radiological, and microbiological assessment.
•    Indeterminate: The likelihood of the patient having M. tuberculosis infection cannot be determined from the blood sample provided. Please see the guide to interpreting indeterminate results below.

 

Quick guide to interpreting INDETERMINATE and EQUIVOCAL QuantifFERON-TB results

INDETERMINATE RESULTS

An indeterminate result from the QuantiFERON-TB assay means that the likelihood of the patient having M. tuberculosis infection cannot be determined from the blood sample provided.

The majority of indeterminate results are caused by a low T lymphocyte response to mitogen stimulation (reported as mitogen tube failure).  
This can be caused by:

•    An insufficient number of T lymphocytes in the blood sample. Is the patient immunosuppressed?
•    A functional inability of the patient’s lymphocytes to generate Interferon-gamma (IFN-γ) in response to mitogenic stimulation, for example if they are taking drugs that supress their immune system.
•    Reduced lymphocyte function due to improper sample handling.

Ideally repeat the QuantiFERON-TB test once with a fresh blood sample. If a mitogen tube failure is reported a second time, there is no value in repeating the QuantiFERON-TB test again until the underlying cause has been identified and resolved. 

Rarely a high background in the negative control (Nil) tube generates an indeterminate result. 
This can be caused by:

•    Excessive levels of circulating IFN-γ or the presence of heterophile antibodies in the sample. Stimulating the cells further as part of the QuantiFERON-TB test does not produce a further IFN-γ response.

Ideally repeat the QuantiFERON-TB test once with a fresh blood sample. If a high background is reported a second time, there is no value in repeating the QuantiFERON-TB test again until the underlying cause has been identified and resolved.

Other causes of indeterminate results can include:

•    Incorrect filling/mixing of the Lithium Heparin or QuantiFERON-TB tubes.
•    If the time between venepuncture and sample incubation in the laboratory is greater than 16 hours.

These indeterminate samples should be repeated using the correct sampling and handling procedures.

For further information please see:

https://www.qiagen.com/gb/tb-testing/what-is-quantiferon/how-does-qft-work/quantiferon-tb-test-result-interpretation

EQUIVOCAL RESULTS

An equivocal reference range of 0.2 – 0.7 IU/mL is now applied to the Q-TB results generated when subtracting the negative control tube value (NIL) from the TB1 and TB2 tube results: TB1-NIL and TB2-NIL.

Where both TB1-NIL and TB2-NIL results are within the equivocal range (0.2 – 0.7), or where one result is equivocal (0.2 – 0.7) and one is true negative (<0.2) the Q-TB results will be reported as EQUIVOCAL with the following interpretation applied:

The significance of this result is uncertain. The risk of progression to active TB disease is likely to be different when compared to patients with clear positive (>0.7) or clear negative (<0.2) results. Suggest repeat testing if clinically indicated; approximately one third of patients with equivocal results will revert to either a clear positive or clear negative result when a fresh blood sample is analysed within six months.

Why have we implemented an equivocal reference range?

Reversion and conversion of low positive (TB-NIL: 0.35 – 0.7) and high negative (TB-NIL: 0.2 – 0.34) Q-TB results on repeat testing is a well-recognised phenomenon. To address this issue, multiple European centres have proposed an equivocal range of 0.2 – 0.7 IU/mL [1-7]; conversion to true positive results have been shown to occur most frequently when the first Q-TB result is between 0.2 – 0.35 IU/mL, and reversions to a true negative result have been shown to occur more frequently when the initial result is between 0.35 – 0.7 IU/mL [5].

The Royal Free hospital in London has implemented this equivocal range in line with other low-incidence TB European settings [6].  Data from the Royal Free lends support to the use of the equivocal range for the reporting of Q-TB results; ~1/5th of their results that fell just below the 0.35 cut-off were positive when repeated on a fresh blood sample, and half of those just above the 0.35 threshold were negative when repeated on a fresh blood sample. This data strongly implies that relying on results within the equivocal range could result in either over-treatment or under-treatment of patients.

  1. Torres Costa J, Silva R, Sa R, et al. Serial testing with the interferon-gamma release assay in Portuguese healthcare workers. Int Arch Occup Environ Health 2011; 84: 461–469.
  2. Schablon A, Harling M, Diel R, et al. Serial testing with an interferon-gamma release assay in German healthcare workers. GMS Krankenhhyg Interdiszip 2010; 5: Doc05.
  3. Schablon A, Diel R, Diner G, et al. Specificity of a whole blood IGRA in German nursing students. BMC Infect Dis 2011; 11: 245.
  4. Ringshausen FC, Schablon A, Nienhaus A. Interferon-gamma release assays for the tuberculosis serial testing of health care workers: a systematic review. J Occup Med Toxicol 2012; 7: 6
  5. Nienhaus A, Ringshausen FC, Costa JT, et al. IFN-gamma release assay versus tuberculin skin test for monitoring TB infection in healthcare workers. Expert Rev Anti Infect Ther 2013; 11: 37–48.
  6. Brown J, Kumar K, Reading J, et al. Frequency and significance of indeterminate and borderline Quantiferon Gold TB IGRA results. Eur Respir J 2017; 50: 1701267
  7. Hermansen TS, Lillebaek T, Langholz Kristensen K, et al. Prognostic value of interferon-gamma release assays, a population-based study from a TB low-incidence country. Thorax 2016; 71: 652–658.

Test Information

Sample vials for testing

Includes details of sample types, volumes, special precautions, turnaround times & reference ranges.

Cellular Immunology/Immunophenotyping Laboratory

Contact Haematology

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Blood Transfusion

Telephone: 0117 4148350
On-Call Haematology BMS via bleep 9433

Autolab heldesk

Telephone: 0117 4148383
On-Call Haematology BMS via bleep 9433

Medical Staff

Dr A Whiteway
Consultant Haematologist
Head of Clinical and Laboratory Haematology
Via Haematology secretaries - Telephone: 0117 4148401

Dr Michelle Melly
Consultant Haematologist
Via Haematology secretaries - Telephone: 0117 4148401

Dr M Kmonicek
Consultant Haematologist
Via Haematology secretaries - Telephone: 0117 4148401

Dr Samreen Siddiq
Consultant Haematologist
Via Haematology secretaries - Telephone: 0117 4148401

Dr Sophie Otton
Consultant Haematologist
Via Haematology secretaries - Telephone: 0117 4148401

Dr Jaroslaw Sokolowski
Consultant Haematologist
Via Haematology secretaries - Telephone: 0117 4148401

Dr Surenthini Salmon
Consultant Haematologist
Via Haematology secretaries - Telephone: 0117 4148401

Dr Kiri Dixon
Consultant Haematologist
Via Haematology secretaries - Telephone: 0117 4148401

Laboratory Staff

Mrs Allison Brixey
Blood Sciences Manager
Telephone: 0117 4148416

Mr Tim Wreford-Bush
Lead BMS Blood Transfusion
Telephone: 0117 4148363

Dr Karen Mead
Specialist Practitioner of Transfusion
Telephone: 0117 4148358

Mrs Grace VanDerMee
Lead BMS Haematology
Telephone: 0117 4148356

Mrs Halina Collingbourne
Quality Manager
Telephone: 0117 4148354

Anticoagulation Monitoring Service

Please note that this service has moved to Pharmacy.

Llinos Jones
AMS@nbt.nhs.uk
Telephone 0117 4148405
Contactable from Mon-Fri 09:00 - 17:00

Secretaries Office

Telephone: 0117 4148401
Email: HaematologySecretaries@nbt.nhs.uk

Contact Haematology

Haematology

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The clinical service is staffed with 8 Consultant Haematologists for interpretation and advice.  The technical and clinical service is provided by Biomedical Scientists (BMS), Clinical Scientists (CS), Associate Practitioners (AP) and Medical Laboratory Assistants (MLA).  In 2024 the laboratory processed 600,000 full blood counts, 250, 000 HbA1Cs & 100,000 clotting requests, with 10% growth each year. Haemoglobinopathy testing is also undertaken, including sickle cell and thalassaemia (SCT) screening for the antenatal and newborn programmes.

The Blood Transfusion laboratory issued over 13,000 blood components and processed 50,000 group and save samples. It also supports the Adult Major Trauma Centre at NBT and provides blood components to two air ambulances for the prehospital setting.  

The department has been approved for BMS training by the IBMS and our Trainee BMS staff are trained in accordance with the IBMS and HCPC regulations. Our qualified staff (CS and BMS) are required to be registered with HCPC. The department is also accredited to train staff undertaking the STP and HSST programmes with the National Science Healthcare school.  There is active encouragement for staff to follow further education courses, such as MSc (Haematology) and management qualifications.

The Department has a dedicated Quality Manager who is responsible for maintaining accreditation and compliance to ISO 15189 and BSQR (https://www.nbt.nhs.uk/severn-pathology/quality/pathology-accreditation-status) . The department participates in all appropriate External Quality Assurance Schemes accredited to ISO 17043 (https://www.nbt.nhs.uk/severn-pathology/quality/external-quality-assurance) for which performance is closely monitored.

Clinical Head of Service
Dr Alastair Whiteway

Blood Sciences Manager
Mrs Allison Brixey

Haematology & Transfusion Laboratory Hours

Monday-Sunday including bank holidays: 8am - 10pm

Specimens received outside these normal opening times are classified as “out of hours”. Out of hours blood product requests must be discussed with the Biomedical Scientist on call. The Biomedical Scientists should always be informed of urgent analytical requests.

Test Information

Sample vials for testing

Includes details of sample types, volumes, special precautions, turnaround times & reference ranges.

Haematology

Newborn Screening

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A peice of equipment within the Laboratory that screens for conditions

The department of Clinical Biochemistry provide the Newborn Bloodspot Screening service for a large part of the South West Region. Testing is undertaken on filter paper bloodspots which are collected from babies when they are 5 days old. Our UKAS accredited laboratory currently screens approximately 35,000 babies each year for ten conditions:

  • Sickle cell disease (SCD)
  • Cystic Fibrosis (CF)
  • Congenital Hypothyroidism (CHT)
  • Inherited Metabolic Diseases:
    • Phenylketonuria (PKU)
    • Medium-chain acyl-CoA dehydrogenase deficiency (MCADD)
    • Maple syrup urine disease (MSUD)
    • Isovaleric acidaemia (IVA)
    • Glutaric aciduria type 1 (GA1)
    • Homocystinuria (pyridoxine unresponsive) (HCU)
    • Hereditary Tyrosinaemia type 1 (HT1)

Early detection through screening and prompt treatment significantly reduces the morbidity and mortality associated with these conditions.
The newborn screening bloodspot programme is provided in close collaboration with health care professionals throughout the region.

Screening for SCD is provided with the department of Haematology at North Bristol NHS Trust (NBT) and Cystic Fibrosis with the Bristol Genetics Laboratory

Information for public and professionals regarding the SCID evaluation.

The screening laboratory works very closely with the South West Regional Metabolic Biochemistry laboratory, co-located with the Newborn SCreening Laboratory, which provides diagnostic testing to support the newborn screening programmes and monitoring of patients identified though the Inherited Metabolic Disease screening programmes. Bloodspot testing for PKU, hypothyroidism (TSH) and a monitoring service for Congenital Adrenal Hyperplasia (17-OHP) is also available.

All of our screening results are uploaded to the Newborn Blood Spot Failsafe Solution (NBSFS) on a daily basis. This is a national web-based solution which allows maternity units, child health record departments, and screening laboratories to verify the screening status of any baby registered in England. It enables easy early identification of those babies who have had no blood spot card received in the laboratory, making it less likely that any babies will miss screening, and also promotes timeliness of repeat sampling.

Laboratory Visits

We offer half-day training sessions to midwives, health visitors, dieticians, nurses, doctors and other healthcare professionals involved in the collection of bloodspots. Please contact us to arrange a visit.

Please see below for responses to our most recent user survey

Key Contacts

Roanna George
Director of Newborn Screening & Consultant Clinical Scientist
Telephone: 0117 4148425

Maryam Khan
Principal Clinical Scientist
Telephone: 0117 4148418

Emma Smith-Thomas
Senior Clinical Scientist
Telephone: 0117 4148427

Dr Sophie Otton
Consultant Haematologist
Telephone: 0117 4148359

Grace VanDerMee
Lead Biomedical Scientist - Haematology
Telephone: 0117 4148356

Rebecca Whittington
Principal Clinical Scientist - Genetics
Telephone: 0117 4146175

Clare Le Masurier
Senior Biomedical Scientist
Telephone: 0117 4148430

Zuzana Miklankova
Senior Biomedical Scientist
Telephone: 0117 4148346

Katherine Carr
Senior Biomedical Scientist
Telephone: 0117 4148430

Contact Newborn Screening

Newborn Screening Laboratory (Bristol)
PO Box 407
Bristol
BS9 0EA

Email: newbornscreening@nbt.nhs.uk
Telephone: 0117 414 8412
 

Opening times: 9am - 5pm Monday - Friday excluding bank holidays.

Clinical advice & interpretation is available during working hours.

Access the NHS Blood Spot Screening Programme Centre

Newborn Screening

Metabolic Biochemistry

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The Metabolic Biochemistry Laboratory (previously Biochemical Genetics) at Southmead Hospital provides a regional diagnostic and monitoring service for the investigation of inherited metabolic diseases. Routine analyses performed include urine organic acids (including quantitative methylmalonic acid, if required), bloodspot/plasma acylcarnitines (including free carnitine), plasma/urine/CSF quantitative amino acids, qualitative galactosaemia screening test, plasma free fatty acids and 3-hydroxybutyrate.

In addition, the laboratory provides specialist testing for the investigation of peroxisomal disorders (plasma very long chain fatty acid analysis, including pristanic and phytanic acids), Smith-Lemli-Opitz syndrome (plasma 7-dehydrocholesterol and 8-dehydrocholesterol)

The Metabolic Biochemistry department is a Centre for Galactosemia investigations and offers a variety of tests for the diagnosis and monitoring of disorders of galactose metabolism including:

  • first line galactosaemia screens,
  • quantitative galactose-1-phosphate uridyltransferase activity for confirmation of classical galactosaemia;
  • urine galactitol for screening and monitoring of galactokinase deficiency or screening for classical galactosaemia if infant has been transfused;
  • galactokinase activity for confirmation of galactokinase deficiency;
  • galactose-1-phosphate for monitoring treatment of classical galactosaemia.

The Metabolic Biochemistry Laboratory at Southmead Hospital is a member of the UK National Metabolic Biochemistry Network (MetBioNet). 

The Metabolic Biochemistry laboratory works very closely with the Southwest Newborn Screening Laboratory to aid in the diagnostic testing to support the newborn screening programmes and monitoring of patients identified though the Inherited Metabolic Disease screening programmes. Bloodspot monitoring for PKU (Phenylalanine and tyrosine) and CAH (17-OHP) for known patients and testing for hypothyroidism on bloodspot (TSH)

We provide a comprehensive advisory service and welcome enquiries to discuss appropriate patient investigation and result interpretation. Clinical and laboratory advice is available during working hours, via contacts listed.

Details of Sample Requirements and Transport can be found under “Requesting” and “Test Information” via the menu at the top of this page.

For any urgent analyses or additional testing on samples already received, please telephone the laboratory to discuss.

CSF amino acid reference ranges currently in use
CSF analyte<6 months6m - 1 year1 - 5 years5 years
Glycine2-152-102-102-10
Threonine21-11512-5512-5512-55
Serine32-8027-6324-5608-44
Alanine18-5913-4113-4113-41

(Source: CSF amino acid reference intervals from the Cardiff Working Group, MetBioNet)

User Handbook

Request form


 

User Survey

Useful Links

National Metabolic Biochemistry Network (MetBioNet)
British Inherited Metabolic Diseases Group
Cardiff Porphyria Service

Metabolic Biochemistry

Roanna George, Consultant Clinical Scientist
roanna.george@nbt.nhs.uk
Tel: 0117 4148425

Maryam Khan, Principal Clinical Scientist
maryam.khan@nbt.nhs.uk
maryam.khan2@nhs.net
Tel: 0117 4148418

Zuzanna Miklankova, Senior Biomedical Scientist
zuzana.miklankova@nbt.nhs.uk
Tel: 0117 4148430/4148346

Katherine Carr, Senior Biomedical Scientist
katherine.carr@nbt.nhs.uk
Tel: 0117 4148430/4148346

Clare Le Masurier, Senior Biomedical Scientist
clare.lemasurier@nbt.nhs.uk 
clare.lemasurier1@nhs.net 
Tel: 0117 4148430/4148346

Emma Smith-Thomas, Senior Clinical Scientist
emma.smith-thomas@nbt.nhs.uk
Tel: 0117 4148427

Southwest Newborn Screening and Metabolic Biochemistry Laboratory
Pathology Sciences Building
Southmead Hospital
Westbury-on-Trym
Bristol,  BS10 5NB
Telephone: 0117 4148346

NBS&MetabolicBiochemistry@nbt.nhs.uk

 

Opening times: 9am – 5pm Monday – Friday excluding Bank Holidays

National Metabolic Biochemistry Network includes national guidelines for investigation of inherited metabolic disorders.

Biochemical Genetics

5-Week Follow-Up

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Information from the Breast CNS Team

This page is supportive information to back up a face-to-face session. This is ideally done 5 weeks after your operation. We are happy for you to come at a later date if you cannot make the original date offered. 

What's next?

Your treatment can include any or all, of the following: 

  • Radiotherapy.
  • Endocrine medication.
  • Chemotherapy.
  • Surveillance mammograms. 

Please call the CNS team on 0117 414 7000 when you have completed your treatment at Bristol Haematology and Oncology Centre (BHOC). 

Long-term follow-up

You will probably have the following: 

  • 5-years of surveillance mammograms.
    • These are yearly appointments from the date of your surgery.
  • Open access to the team.
    • If you have any worries or concerns about your breasts, you can contact the Breast Care Centre or the CNS team directly instead of your GP.
  • My Medical Records (MMR).
    • Self-monitoring website, with access to your monitoring plan and results, information resources, message centre (for nonurgent queries).
  • Discharge after 10 years.

Personalised care and support planning appointment and Living Well Day

Personalised care and support planning appointment:

  • Within 6 months you will be offered a Holistic Needs Assessment.
  • This is an appointment with one of our Cancer Support Workers to discuss moving forward.

Living Well Day (within 1 year of diagnosis):

  • A day that covers multiple topics about staying well and has guest speakers.

Living Well Course:

  • This is run by our psychologists and supported by the CNS and CSW team. Please ask your CNS for more details. 

Vita Health Group:

Breast pain

Breast pain following treatment is very common in women of all ages. 

Three types:

  • Cyclical.
  • Non-cyclical.
  • Referred pain. 

YouTube video explaining breast pain:

Breast pain is very common for up to 1 year post radiotherapy. If you are having trouble, we can refer you to the Late Effect Team who help with the effects of radiotherapy. 

Lymphoedema

Patients who have had a sentinel node biopsy or auxiliary node clearance, these actions may help prevent lymphoedema developing

  • Massage and moisturise the area.
  • Avoid breaks in the skin, use factor 50 SPF, have blood taken from and vaccines in the opposite arm from your surgery.
  • Early detection helps.
  • You will need an appointment with Breast Care Centre before referral to the lymphoedema team. 

Penny Brohn UK - Lymphoedema support group. 

Managing lymphoedema | Breast Cancer Now 

Exercise and energise

If you have been given post operative arm movements, keep them going. 

These can help with getting moving: 

  • Energise classes – Horfield Leisure Centre and EA Stadium, Clevedon. Self-referral on Bristol City Council Website.
  • NHS APP – Brisk Walking.
  • Dietician – Macmillan have a self-referral form. Not specifically for weight management, but how to best 'fuel' your body.
  • Fatigue – Macmillan, Bosom Buddies and Penny Brohn run courses on fatigue management.
  • If you are concerned about bone density, then the site is full of useful advice: Osteoporosis: Exercise for bone health

Fatigue

Fatigue is more common than people think and is very different to feeling tired. 

These resources have information about fatigue and how to manage it. 

The Gloucester Team have put together 4 online videos on managing fatigue, diet, exercise and psychological wellbeing:

Royal College of Occupational Therapists – Managing Fatigue. Not Cancer specific:

Breast Cancer Now – Cancer-related fatigue:

Menopausal symptoms

If your cancer was hormone responsive, you are likely to take hormone repressive medication. 

The web sites below offer great advice: 

Complex Menopausal Referral – can be referred by your Breast Consultant.

Self-assessment

Touch, Look, Check

 (Even if you have had a mastectomy)

  1. Check your breast once a month.
  2. Stand in front of a mirror and put your arms over your head. Look for puckering,    dimples or redness to the skin.
  3. Raise arm above your head and using the flat of your hand, start at the 12 o’clock position and roll to centre of breast. Complete the clock face.
  4. Make sure to check your axillary tail (bit between your breast and armpit).
  5. With one arm raised, check under arm and along clavicle bone. 

The CoppaFeel! website has more information and checking your breasts: How To Check Your Breasts, Pecs or Chest | CoppaFeel!

Symptoms to report

The most common recurrences (when the cancer comes back) are in the breast and most likely picked up on surveillance mammograms. 

If you have any of these for 4 weeks or more, that don’t stop at all and don’t get better with regular medication, please get in touch.

  1. Persistent cough and shortness of breath.
  2. Severe or on-going headaches
  3. Loss of balance, weakness or numbness in limbs, altered vision
  4. Pain in bones, back, hip, rib etc. that does not get better with pain relief and gets worse at night.
  5. Feeling bloated or not being able to go to the toilet. Feeling full quickly or change to appetite, or unexpected weight loss.
  6. Discomfort or swelling under your right rib (where your liver is). Can radiate across abdomen.
  7. Feeling more tired than normal. 

Penny Brohn

Located in Pill, this is a great place with multiple treatment support programmes, or just to have a very tasty lunch!

  • Regular group sessions/in person activities – Yoga, relaxation, nutrition support, QI Gong, creativity workshops, strength and stamina classes.
  • Self-care resources
  • Personal consultations
  • Visit the grounds for a walk
  • Go to the café. 

Penny Brohn UK – Cancer wellbeing for everyone

Screenshot of the Penny Brohn website homepage

Maggie’s House

Maggie’s House centres offer support to anyone with cancer or their loved ones.  Support offered includes: 

  • Cancer support specialist available.
  • Pilates.
  • Benefits advice and support.
  • Choir.
  • Tai Chi.
  • Managing stress course.
  • Fitness sessions.
  • Relaxation sessions.
  • Where now post treatment course.

Maggie's | Everyone's home of cancer care

Screenshot of the Maggie's House website homepage

Bosom Buddies

This group helps patients and families dealing with effects of breast cancer. Meetings are at 19:00 on the first Tuesday of each month at:

BAWA club, 
589 Southmead Road, 
Bristol,
BS34 7RG. 

  • Guest speakers.
  • Monthly lunches – at Penny Brohn.
  • Complementary therapies – a place to treat yourself and recharge.
  • Workshops – wellness days throughout the year covering different and useful topics. 

Home - Bosom Buddies Bristol

Macmillan Centre

The centre provides information and support around cancer including:

  • Information leaflets.
  • Advice and support.
  • Relaxed area to have refreshments and talk.
  • Information and support groups.
  • Quiet rooms for one-to-one support.
  • Care planning with a Macmillan Cancer Support Worker.
  • Health and wellbeing events.
  • Breast prosthesis fitting.
  • Physiotherapy.
  • Dietitian.
  • Psychological support.
  • Benefits advice.
  • Complementary therapies.
  • Arts on referral.

My Medical Record

My Medical Record is a free and secure website where you can access information about your post cancer treatment follow-up, access to information resources and message centre.

If you would like access to My Medical Record or have any questions, please contact: BreastMMR@nbt.nhs.uk

My Medical Record logo

End of treatment summary

At the end of your active treatment, you will receive a treatment summary from your consultant. A copy will also be sent to your GP. 

Following this you may be offered a Cancer Care Review by the GP Practice.

Moving forward

Although you have the continued support of the whole team at Southmead, this page also shows you what other support there is out there. 

Breast Cancer Now

We're Breast Cancer Now | Breast Cancer Now

© North Bristol NHS Trust. This edition published December. Review due December 2028. NBT003834.

Orthopaedics Current Research

Regular Off Off Orthopaedics - current research

The Avon Orthopaedic Centre, based at North Bristol NHS Trust, has a long history of being one of the leading centres in the country for research and innovation in orthopaedic care.

The Bristol Medical School Musculoskeletal Research Unit are also based within the site, with this partnership enabling clinicians and research methodologists to closely collaborate both locally and internationally to deliver high quality research based on our multidisciplinary expertise.

Please speak to the person treating you to find out if there is a research study that may be able to help you.

An integral part of the Severn Major Trauma Network (SMTN) based at NBT, this highly skilled team are able to include patients in the crucial early phases post traumatic injury in a sensitive and caring manner.

Trauma & Orthopaedics Studies:

*SMTN specific-research

FOREST

Fix or Replace enhancing distal humerus fracture

A broken elbow is a common injury, particularly amongst older people. If the bone is badly broken, recovery is difficult, and people often suffer with pain and stiffness even after the break has healed. It is important that we offer people the best chance of making a full recovery.  

The clinical trial is looking at the cost effectiveness of elbow arthroplasty undertaken for distal humeral fractures in older patients when compared to open reduction and internal fixation. 

PI: Alisair Bott 

Start Date: 17/10/2025 

End Date: October 2027 

Local Ref: 5721 

TILLI

Thromboprophylaxis in lower limb immobilisation

A study comprising two liked open label Phase lll randomised controlled trials evaluating the effectiveness and cost effectiveness of different methods of pharmacological prophylaxis for patients with temporary lower limb immobilisation. 

Venous thromboembolism (VTE) is a major global health burden. Many people who survive VTE suffer from longer physical complications or psychological sequelae. Temporary lower limb immobilisation (Plaster cast, walking boot or rigid splint) and injury are combined risk factors for VTE. Approximately 70.000 people are immobilised after injury every year in the UK. VTE in this setting is potentially preventable through early prophylaxis with anticoagulant medication. However, baseline VTE risk varies widely across the population and there are multiple drugs for prophylaxis, including Direct oral Anticoagulants (DOACs) and parenteral therapies. There is no high-quality evidence comparing different methods of pharmacological thromboprophylaxis for patients at high risk of VTE and limited evidence of the benefits and risks of any prophylaxis for patients at low risk of VTE. 

PI: Nick Adams and Michael Kelly

Start Date: August 2025

End Date: November 2027

Local Ref: 5560

REACH

This study will compare two different ways to help people with their recovery from a broken shoulder. Patients with this injury are usually referred for physiotherapy appointments for advice on how to get their arm and shoulder working again

In this study, patients will be asked to follow one of two rehabilitation programmes. They will either be offered:  Outpatient physiotherapy appointments to be shown what exercises to do or advice and information about a self-directed exercise programme that can be done at home. Advice will be given by a health professional in the hospital clinic, and you will also be given a high-quality workbook to help guide your recovery. 

PI: Rhian Witham 

Start Date: Jan 2025

End Date: Dec 2026

Local Ref: 5639

POP-I

Peri-Op Iron and Erythropoietin (EPO) Intervention Study 

Anaemia after major emergency surgery in older people with hip fractures is common and is associated with increased mortality, longer length of hospital stay and poorer quality of health. The POP-I trial aims to recruit patients 60 and over, who are anaemic in the postoperative period following either hip fractures. Participants who give their consent will be assigned randomly into one of three study groups: Usual care, Iron Infusion, or iron infusion and an injection that will stimulate red blood cell production.

PI: Katherine Walsh 

Start Date: Nov 2024

End Date: 31/12/2026

Local Ref: 5535

REPPORT

This study aims to find out the best treatment for patients 16 years and over with repeated dislocations of their kneecap (patella). The study is comparing personalised knee therapy, delivered by a Physiotherapist, to surgical stabilisation for improving patient function following repeated dislocation.

Project Details:

PI: Mr Damian Clark

Start Date: Dec 2023

End Date: 31/10/2025

Local Ref: 5440

DIDACT

This study compares surgery to sling immobilisation in the management of adults with a displaced fracture of the distal clavicle (Collarbone) in patients over the age of 18 years old with 21 days of injury. 

When the outer end of the collarbone has broken, parts of the bone may separate and not line up. This can rupture the ligaments connecting the collarbone to the shoulder blade. Doctors commonly treat this type of injury that have had with: A sling, to help support the shoulder while the bone heals naturally; or surgery that uses metal work to try the separated bone while they knit together naturally.  Both treatments work but we do not know which one works the best. The aim of this study is to find this out. 

Project Details:

PI: Iain Packham 

Start Date: December 2023

End Date: 31/3/2026

Local Ref: 5405

DRAFT 3-CASP*

Distal Radius Acute Fracture 3: Cast verus Splint; a randomised non-inferiority trial comparing clinical and cost-effectiveness of a standard cast versus removable splint in Adults with a distal fracture tat does not require Manipulation.

When a person breaks their wrist, the treatment usually involves a support for the injured wrist. This support provides pain relief. It also protects the fracture (the break) whilst it heals.

In most hospitals in the UK, people with a broken wrist are given a plaster cast. After 4 to 6 weeks, they go back to hospital to have the cast taken off.

The results of a recent research study show that a removable wrist splint might provide the wrist with the same amount of support as a cast.

The benefit of this is that you can take it off yourself at home, so you don’t need to have it removed at a hospital. This could be more convenient for you. Providing people with a splint instead of a cast might also save money for the NHS.

At the moment, doctors, physiotherapists and other healthcare professionals are not completely sure if having a splint gives the same level of pain relief and support as a cast.

In this study, we will directly compare people receiving a cast with people receiving a splint for treating broken wrists. We want to find out if levels of pain and the ability to do everyday tasks are similar between the two groups. We will also have a look at the cost of both treatment options to the NHS, and society as a whole.

Project Details:

Principal investigators: Alasdair Bott and Fran Verey

Start date: 03/2023

End date: 30/11/2025

Local ref: 5350

WHiTE 10 LIT*

Lidocaine Intravenous Trial

A broken hip is a very serious injury that requires surgery to repair or replace the broken bone followed by a period of recovery in hospital. Around a quarter of patients who have a hip fracture have an episode of ‘delirium’ following surgery. Delirium is a condition where the patient loses awareness of themselves and the environment, and has difficulty thinking clearly. Inflammation, caused by the hip fracture and by the surgery to repair the hip, is thought to be the root cause of delirium. 
This study investigates the use of a drug called ‘lidocaine’ to see if it reduces the risk of delirium during surgery for a hip fracture.

Project Details:

Principal Investigator: Dr Paddy Morgan

Planned end date: June 2025

Local Ref: 5120

WHITE 11*

Fix or Replace Undisplaced Intracapsular fractures Trial of Interventions (FRUITI).

Patients who sustain hip fractures that involve minimal displacement of the bone fragments may be treated surgically with either replacement of the hip joint of fixation of the fragments. The study is randomly allocating patients with these types of fracture to either type of surgery. Patients will be monitored up to 12 months post surgery.

Project Details:

Principal Investigator: Mr Tim Chesser
Planned End Date: 31/01/2029
Local Ref: 4695

Elective Orthopaedics Studies:

ACL Starr-UK

ACL Starr-UK

Anterior Cruciate Ligament Stratified Accelerated Repair or Reconstruction Single blind randomised controlled trial for patients with proximal ACL injuries treatment with ACL repair v ACL reconstruction (ACL STARR).

When people decide to have surgery to fix a torn ACL, there are two options:

One is very commonly used and is tried and tested. This is called a ‘reconstruction’, which means that the torn ligaments is replaced using tissue from elsewhere in your body.

The other is called a ‘repair’ which means that your torn ligaments is kept and repaired. Not every ACL tear is suitable for repair. The study is looking at comparing these two different types of surgery to see if one is better than the other. Participant and physio blinded to the treatment allocation.

PI: James Murray

Start Date: 17/06/2025

End Date: 30/06/2027

Local Ref: 5717

Adaptis

A prospective multi-centre cohort series of INFINITY with ADAPTIS and EVERLAST technology with Poly insert for patients requiring primary total ankle replacement (TAR) i.e Total Ankle Arthroplasty.

AN ankle replacement procedure consists of replacing the warn-out joint surface of the ankle with metal and plastic components that are shaped to allow continued movement of the ankle. There are several different types of ankle replacement available. Infinity ankle replacements are already used in NHS hospitals. The INFINITY with ADAPTIS and EVERLAST ankle replacement system is a development of the infinity ankle implant, designed to attach to the bone better and to wear out more slowly.

PI: Steve Hepple

Start Date: 02/09/2024

End Date: 09/2030

Stability 2

Stability 2: ACL reconstruction +/- Lateral Tenodesis with patellar Vs Quad tendon, is an international, multicentre randomised clinical trial which is recruiting young active ACL deficient patients. ACL rupture is one of the most common musculoskeletal injuries in young individuals, particularly those who are active in sports. This trial is looking at quadriceps and patellar tendon grafts, as well as lateral extra-articular tenodesis, to see which combination gives the best result for young athletic individuals who are at high risk of ACL re-injury.

PI: James Robinson/Nick Howells
Start Date: 08/07/2025
End Date: 30/06/2027
Local Ref: 5045

PART

The clinical and cost-effectiveness of elective primary total knee replacement with PAtellar Resurfacing compared to selective patellar resurfacing. A pragmatic multicentre randomised controlled Trial with blinding.

Total knee replacement (TKR) is commonly used for treating severe arthritis, with over 100,000 performed annually in the UK. During TKR, surgeons can resurface the patella (replace the under surface of the kneecap with a plastic prosthesis) or leave the native patella to articulate with the femoral implant. Resurfacing the patella is initially more expensive (longer theatre time, higher implant cost, risk of additional post-operative complications), but in the long-term it can reduce the risk of on-going pain which can result in further surgery to resurface the patella. NICE recommends always resurfacing the patella rather than never doing so. NICE did not find sufficient evidence on selective resurfacing (intraoperative decision based on the state of the patellar surface and the patients' symptoms) to make a recommendation on that strategy, but did recommend specific research was conducted on this question. If effective, selective resurfacing could result in optimal individualised patient care. This study evaluates the clinical and cost-effectiveness of elective primary TKR with always patellar resurfacing compared to selective patellar resurfacing.

Project Details:

Chief Investigator: Ashley Blom

Principal Investigator: Sven Putnis

Planned End Date: 31/03/2026

Local Ref: 4999

HIPPY

Hip Implant Prosthesis Programme for the Younger total hip replacement patient.

Over 100,000 hip replacements are performed each year in the UK. Around 90% of patients report good pain relief and mobility after surgery, and most implants last 25 years or more.

Primary hip replacement involves replacing a damaged hip joint with an artificial implant that has two main parts. One part goes into the leg bone and ends in a ball which fits into a socket or cup attached to the pelvis, making a ball-and-socket joint. Implants can be fixed to bone with cement (cemented), without cement (uncemented), or partially cemented (hybrid). Cost ranges from £500 for some cemented to £2,000 for some uncemented implants.

When an implant fails, for example due to loosening or wear, it has to be re-done. Revision is a major operation, typically costing the NHS over £10,000. Cemented hip implants are safe, inexpensive, have a long track-record, and offer the best value-for-money for men aged over 75 and women aged over 65 years. There is no high-quality evidence to suggest more expensive uncemented or hybrid implants are any better than cemented implants for younger patients. Yet three quarters of NHS patients aged under 70 years receive uncemented or hybrid implants.

This Programme of research aims to find out which hip implants are best for patients under 70 years of age.

Project Details:

Chief Investigator: Elsa Marques

Principal Investigator: Mike Whitehouse

Planned End Date: 01/07/2031

Local Ref: 5258, 5259

Furlong Evolution® Hip Trial

This is a commercial study reviewing progress of patients who have undergone total hip replacement surgery using the Furlong short stem implant. The potential benefit for using a short stem implant is that it aids early mobilisations and preserves the femoral bone should further surgery be required.

Project Details:
Principal Investigator: William Poole
Planned End Date: 30/09/2027
Local Ref: 3275

UK Multi-centre, observational, prospective, Post-Market Clinical Follow-up of the INFINITY® Total Ankle System

A commercial study involving review of patients treated with an INFINITY Total Ankle Replacement. The study is collecting clinical and patient reported outcomes up to 10 years following surgery.

Project Details:

Principal Investigator: Mr Steve Hepple
Planned End Date: 31/12/2029
Local Ref: 4168

ReMatch

This study aims to compare two different plates currently used in knee realignment surgery (high tibial osteotomy). The purpose of the metal plates is to maintain the correct realignment achieved at surgery whilst the bone heals. The two plates, TomoFix and ActivMotion are both used in current practice and comply safety regulations.

Once the knee correction has healed (approx. 12 months) the plate can be left in. Some patients may however experience discomfort that related to the plate and benefit from plate removal ,  about a year after their initial operation. The ActivMotion plate design is a smaller than the Tomofix and it is therefore potentially less likely to cause discomfort . It is anticipated that second operations for plate removal will be less frequent than for the Tomofix plate.

In this study we would like to compare the number of plates that need removal following surgery, assess pain levels in patients in the first two years following surgery and compare the amount of pain relief used in the immediate post-operative recovery period.

Participants will be asked to complete a questionnaire before they have their operation and twelve months after the operation to assess their pain and function. This information will be used to compare the outcome of the plates.

Project Details:
Principal Investigator: Mr James Murray
Planned End Date: 01/10/2027
Local Ref: 3810

PERSONA

This study is a prospective, post-market, global, multi-center, non-controlled, observational clinical evaluation of the commercially available Persona® Partial knee implant. The primary objective of the study is to obtain survivorship data and assess clinical performance (outcomes) using outcome measurement tools (e.g. patient questionnaires), radiographic assessments and adverse event data.

In total, there will be 30 global sites in the US and Europe. In the UK, the multi-centre study is being conducted at four sites in England with a maximum of 40 patients at each centre. Male and female individuals aged 18 years and over, with a confirmed diagnosis of osteoarthritis and who qualify for unicompartmental (partial) knee surgery will be potentially eligible to take part. Each Investigator will offer study participation to each consecutive eligible patient who satisfies the Inclusion/Exclusion criteria for partial knee arthroplasty using the commercially available Partial Persona Knee.

Following completion of the informed consent process, participants will undergo preoperative clinical evaluations prior to their partial knee arthroplasty. Patients will then be asked to attend post-operative follow-up clinic visits at 3 months, 1 year, 2 year, 5 year and 10 year. At these follow-up visits, clinical and radiographic evaluations will be conducted.

Project Details:

Principal Investigator: Mr Andrew Porteous
Planned End Date: 31/12/2028
Local Ref: 3905

Hip Replacement Failure & Bone Density

Hip replacements are a very common operation for people with painful arthritis. However, sometimes these hip replacements need to be done again because of pain and loosening.  We think that similar things may lead to loss of bone density (thinning of the bones) and loosening of joint replacements.  Because of this there is concern that loss of bone density may increase the need for further surgery to correct the loose joint replacement.

The study aims to see if there are differences in bone density and other factors that may explain why some people need their hip replacements done again (revised) and some do not.

Project Details:

Principal Investigator: Dr Emma Clark
Planned end date: 31/12/2025
Local Ref: 2503

RAPSODI

 Reverse or Anatomical replacement for Painful Shoulder Osteoarthritis, Differences between Interventions (RAPSODI): a multi-centre, pragmatic, parallel group, superiority randomised controlled trial. 

Patient aged 60 years or over with painful OA of the shoulder and an intact rotator cuff presenting to secondary care and through shared making, having completed non-surgical treatments, proceeding to shoulder replacement. In shoulder replacement surgery, doctors remove the damaged parts of the shoulder and replace them with plastic or metal parts. 

The RAPSODI-UK study compares two types of shoulder replacement: the Total shoulder  replacement, and the Reverse Shoulder replacement.  These are the two types of shoulder replacement that NHS doctors use most often for patients with arthritis who need a shoulder replacement.  

They both help to reduce pain, and maintain or improve movement. However, doctors genuinely don’t know yet which one works best. 

 Project Details:

Principal Investigator: Mr Mark Crowther  

Planned end date: 04/2026

Local Ref: 5267 

IMPACT

Evaluation of safety and efficacy of a resorbable collagan IMplant in treatment of High Grade PArtical thiCkness Tear; A prosepctive, mulitcentre, randomized, control trial.

Patients who are 18 years and over, with a partial rotator cuff injury who’s symptoms persist following 3-6 months of conservative treatment are eligible for this study.

Impact study compares two types of surgery:

The rotator cuff is a group of muscles and their tendons that act to stabilize (hold in place) the shoulder. Torn rotator cuff tendons are common injuries that result in shoulder weakness and pain. These injuries can be treated with medications, injections, and physical therapy. However, when symptoms continue despite these treatments, surgery is often recommended to repair the injured tendon. An alternative to standard surgical procedures for repairing torn rotator cuff tendons involves applying a protective layer of collagen over the injured tendons to aid in healing and stop disease progression. Collagen is the most commonly found protein in the body and is present in the skin, bones, tendons and ligaments. The collagen is extracted from bovine Achilles tendons (from cows).  

The purpose of this study is to find out if the marketed REGENETEN™ Bioinductive Implant is better than standard repair techniques for surgically treating partial-thickness rotator cuff tears. Smith+Nephew is the company paying for the study and REGENETEN is one of their products.

Project Details:

Principal investigator: Iain Packham

Start date: March 2023

End date: June 2026

Local ref: 5311

THRIVE

Tailored physiotherapy Rehabilitation after revision total hip replacement

Hip replacement surgery is usually a success. However, some people will need another surgery on their hip. This is called revision surgery. After revision surgery, people often need to stay in hospital longer and may find it difficult to get back to activities they did before. We know a lot about how to help people recover after their first hip replacement, but we do not know enough about the best way to help recover after revision surgery.

We want to compare two types of physiotherapy for revision surgery: (1) comprehensive physiotherapy designed around the patient that includes exercise and education, and (2) physiotherapy that a patient would routinely get after surgery 

PI: Emma Kislingbury 

Start Date: 3/10/2025 

End Date: 31/05/2026 

Local Ref: 5812 

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Telephone: 0117 4149330
Email: research@nbt.nhs.uk

Orthopaedics
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Pleuroparenchymal Fibroelastosis (PPFE)

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Pulmonary fibrosis (PF) describes a variety of disorders that may lead to scarring in the lung.

What is Pleuroparenchymal Fibroelastosis (PPFE)?

Pleuroparenchymal Fibroelastosis (PPFE) is a rare form of PF that tends to affect the upper parts of the lung. The scarring tends to involve the areas just beneath the lining of the lungs (the pleura) and the lung itself (the parenchyma).

What are the symptoms?

In PPFE it can be more difficult for the lungs to transfer oxygen into the bloodstream. This means the body may not get the oxygen it needs to work properly. This can cause breathlessness and/or a cough from the irritation. Some people experience a dull pain around the lungs and feel fatigued. Weight loss and recurrent lung infections may occur.

Why does PPFE happen?

It is not entirely clear why PPFE happens. It is sometimes associated with a separate lung fibrosis condition affecting the bottom of the lungs or following previous treatment for cancer.

It is difficult to predict how the condition will develop in a person as it can vary a lot.

What tests will I have?

Your specialists will take a detailed medical history and perform a thorough physical examination. You may be asked to have the following investigations:

  • Chest X-ray.
  • Lung function tests. These are breathing tests which show how well your lungs are working. They are used later to monitor your lung disease, to see if it is progressing. You may also be asked to have a walk test where you will be asked to rate how breathless you are and measure your walking distance and oxygen levels.
  • A series of blood tests will be done to screen for systemic inflammatory conditions.
  • A CT scan of your chest will show a detailed picture of your lungs that allow your specialist to identify scarring of the lungs.
  • Some people may also have a bronchoscopy, where a small flexible tube is passed down into your lungs to allow collection of cells. This may help with diagnosis and management.

What treatments are available?

Treatments may differ depending on the symptoms you have, and your specialist will discuss which treatment is right for you.

Antifibrotic medications, like nintedanib, can slow down the build-up of scar tissue in the lungs. They may be used to treat PPFE if there is evidence that it is getting worse. These treatments may reduce the rate that your lung fibrosis progresses, but they don’t stop the lung scarring completely. And they won’t get rid of any scar tissue that has already formed.

You may be prescribed an antibiotic to prevent lung infections.

Other medications and therapies are used to help relieve symptoms, such as cough and breathlessness. Your specialist will discuss options with you on an individual basis.

Pulmonary rehabilitation is a supervised exercise and education programme that can help you to learn to manage your breathlessness and remain active. The programmes are multidisciplinary, meaning that the team includes respiratory physiotherapists, nurses, dieticians, doctors and others, and can help improve your energy, strength, and quality of life.

As the lung fibrosis stops enough oxygen getting into the bloodstream, some people may need supplemental oxygen therapy. Oxygen therapy may help with breathlessness and help you to be more active. Corrected levels of oxygen in the blood are necessary for normal body functions and reducing additional health problems.

You should also discuss with your doctor if there are any clinical trials you can participate in. Clinical trials are voluntary research studies designed to answer specific questions about the safety and/or effectiveness of medications.

A small minority of patients may require assessment for and be suitable for lung transplantation.

How can I help myself?

Have your seasonal vaccinations (COVID-19 and flu) and the pneumonia vaccination (you only have this once).

You may be eligible for a variety of benefits such as Attendance Allowance or Personal Independence Payment if you need help with personal care or getting about.

Our specialist nurses run a regular Pulmonary Fibrosis Support Group which is a space for discussion with other patients with lung fibrosis. Here we also aim to have several presentations from a variety of guest speakers and charities.

Keep active and do what you enjoy!

Further information and resources

Action for pulmonary fibrosis

Asthma + Lung UK

How to contact us

© North Bristol NHS Trust. This edition published June 2025. Review due June 2028. NBT003790. 

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Organising Pneumonia (OP)

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What is Organising Pneumonia (OP)?

Organising Pneumonia (OP) is a rare lung disease that causes inflammation and scarring in the small airways (bronchioles) and air sacs (alveoli) of the lung. Although OP has pneumonia in its name, it is not an infection and cannot be passed on.

What are the symptoms?

In OP it can be more difficult for the lungs to transfer oxygen into the bloodstream. As a result the body may not get the oxygen it needs to work properly. This can cause breathlessness and/or a cough from the irritation, and you may feel fatigued. Some people can have a flu-like illness, high temperatures, or lose weight.

Why does OP happen?

It some cases is not entirely clear why OP develops and this may be called idiopathic or cryptogenic disease. In rare cases it may be linked to an inflammatory condition that affects other parts of the body.

What tests will I have?

Your specialists will take a detailed medical history and perform a thorough physical examination. You may be asked to have the following investigations:

  • Chest X-ray.
  • Lung function tests. These are breathing tests which show how well your lungs are working. They are used later to monitor your lung disease, to see if it is progressing. You may also be asked to have a walk test where you will be asked to rate how breathless you are and measure your walking distance and oxygen levels.
  • A series of blood tests will be done to screen for systemic inflammatory conditions.
  • A CT scan of your chest will show a detailed picture of your lungs that allow your specialist to identify scarring of the lungs.
  • Some people may also have a bronchoscopy, where a small flexible tube is passed down into your lungs to allow collection of cells. This may help with diagnosis and management.

What treatments are available?

Treatments may differ depending on the symptoms you have, and your specialist will discuss which treatment is right for you. In some mild cases, symptoms of OP may resolve without treatment and can simply be monitored and treated later if necessary.

Medications

Steroids are produced naturally in the body by the adrenal gland. Additional steroids called prednisolone can be given to try and reduce inflammation in some patients.

They are usually given in a tablet but may be given intravenously (into a vein). If you are prescribed steroid tablets long-term, you should not stop taking them suddenly. You will be given a ‘steroid emergency card’ which you should always carry with you.

The specialist may also see if you need bone protection medication and anti-reflux treatment whilst on steroids.

Immunosuppressive medication

Mycophenolate mofetil and azathioprine are medications that lower the activity of the immune system to help control the disease. Treatment with immunosuppressive medications may allow you to stop taking steroids. As a result, they are sometimes also called a ‘steroid-sparing agent’. You will require regular blood tests to monitor your response to treatment.

Other treatments

Other medications and therapies are used to help relieve symptoms, such as coughs and breathlessness. Your specialist will discuss options with you on an individual basis.

Pulmonary rehabilitation is a supervised exercise and education programme that can help you to learn to manage your breathlessness and stay active. The programmes are multidisciplinary. This means the team includes respiratory physiotherapists, nurses, dieticians, doctors and others. It can help improve your energy, strength, and quality of life.

As the lung fibrosis stops enough oxygen getting into the bloodstream, some people may need supplemental oxygen therapy. When levels of oxygen are low, oxygen therapy may help with breathlessness and enable you to be more active. Corrected levels of oxygen in the blood are necessary for normal body functions and reducing additional health problems.

You should also discuss with your physician if there are any clinical trials in which you can participate. Clinical trials are voluntary research studies, conducted in people, which are designed to answer specific questions about the safety and/or effectiveness of medications.

How can I help myself?

Have your seasonal vaccinations (COVID-19 and flu) and the pneumonia vaccination (you only have this once).

You may be eligible for a variety of benefits such as Attendance Allowance or Personal Independence Payment if you need help with personal care or getting about.

Our specialist nurses run a regular Pulmonary Fibrosis Support Group which is a space for discussion with other patients with lung fibrosis. Here we also aim to have several presentations from a variety of guest speakers and charities.

Keep active and do what you enjoy!

Further information and resources

Action for pulmonary fibrosis

Asthma + Lung UK

How to contact us

© North Bristol NHS Trust. This edition published June 2025. Review due June 2028. NBT003789. 

Support your local hospital charity

Southmead Hospital Charity logo

See the impact we make across our hospitals and how you can be a part of it. 

It's okay to ask

Illustration of 3 clinicians wearing blue scrubs with stethoscopes around necks

Find out about shared decision making at NBT.