What is sarcoidosis?

Sarcoidosis is a condition where lumps called granulomas develop at different sites within the body. Granulomas are made up of clusters of cells involved in inflammation. If many granulomas form in an organ, they can prevent that organ from working properly.

What causes sarcoidosis?

The exact cause of sarcoidosis is not known. It probably involves a precise combination of genetic and environmental factors. The condition does run in some families. So far, a single factor causing sarcoidosis has not been identified.

What parts of the body can be affected?

• Sarcoidosis can affect many different parts of the body. 
• The lungs and lymph glands in the chest are most commonly involved, affecting 9 in 10 patients with sarcoidosis. 
• Other parts of the body that may be commonly involved are the skin, eyes and lymph glands elsewhere in the body. 
• The joints, muscles and bones are involved in 1 in 5 patients.
• The nerves and nervous system are involved in about 1 in 20 
  patients. 
• The heart is involved in about 1 in 50 patients.

What are the symptoms of sarcoidosis?

The symptoms of sarcoidosis depend on which part of the body is affected. They can include: 

• cough 
• feeling breathless 
• red or painful eyes 
• swollen glands 
• skin rashes 
• pain in joints, muscles or bones 
• numbness or weakness of the face, arms, or legs 

Patients with sarcoidosis may feel tired and lethargic (fatigued), lose weight or suffer with fevers and night sweats. 

Sometimes, the symptoms of sarcoidosis start suddenly and don’t last long. In other patients, the symptoms may develop gradually and last for many years. Some people don’t have any symptoms at all and are told they have sarcoidosis after having a routine chest X-ray or other investigations.

How is sarcoidosis diagnosed?

There is no single or specific test to diagnose sarcoidosis. Your specialists will take a detailed medical history and perform a thorough physical examination. You may be asked to have the following investigations:

•  Blood tests: Your doctor may arrange blood tests to check your kidney and liver function, and your calcium levels. They may also check a marker in your blood called angiotensin-converting enzyme (ACE), which is sometimes raised in patients with sarcoidosis.
• ECG: a tracing of the electrical activity of your heart.
• Chest X-ray
• Lung function tests: These are breathing tests which see how well your lungs are working. These can be used to monitor your lung disease and also to see whether it is responding to treatment. 
• CT scan of your chest: This shows a detailed picture of your lungs. There are characteristic patterns on these pictures that can help your specialist to identify either scarring or inflammation of lung tissue.
• PET CT: This is a scan of your body to look for areas that may be affected by sarcoidosis but might not be causing you any symptoms.
  Biopsy: Your specialist might wish to remove a small piece of tissue to confirm the diagnosis. The site of the biopsy and specific procedure performed will be discussed with you, as it depends on which parts of the body are affected. 

As sarcoidosis can affect many different parts of the body, your doctor may ask other specialists (who specialise in the part of your body affected by sarcoidosis) to look after you as well. 

The outlook

Sarcoidosis gets better without treatment in most patients (around 60%). In others, the condition persists and may require some treatment. In the minority of patients that develop a more serious form of the disease, more aggressive and prolonged treatment is sometimes required.

Sometimes symptoms may suddenly get worse - this is known as a ‘flare-up’. This may be triggered by stress, infections, a change in environment or, often, nothing recognisable. 

A much smaller proportion of patients develop permanent scarring of their lungs (called pulmonary fibrosis). 

How is sarcoidosis treated?

Treatment may be required for patients whose sarcoidosis is causing severe symptoms or is preventing the affected organ(s) from functioning normally.

Medications

Steroids are produced naturally in the body by the adrenal gland. Additional steroid in the form of prednisolone can be given to attempt to reduce inflammation in some patients. 

They are usually given in tablet form but may be given by injection into a vein. If you are prescribed steroid tablets on a long-term basis, you should not stop them abruptly. 

You will be given a ‘steroid emergency card’ which you should always carry with you. 
The specialist may also assess the need for bone protection medication and anti-reflux treatment to protect against some side effects whilst on steroids.

Sometimes corticosteroids may not be completely effective, or cause side effects. Other medications may be used, either alone or in combination, to help reduce the steroid dose. These are often called ‘immunosuppressive’ or ‘steroid-sparing’ medications. Methotrexate, Mycophenolate mofetil and 
Azathioprine are commonly used. 

Whilst you are taking immunosuppressant medication you will require regular blood tests to monitor your response to 
treatment.

Clinical trials

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

How can I help myself?

Have your annual respiratory 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 similar lung problems. Here we also aim to provide several presentations from a variety of guest speakers and charities. 

Keep active and do what you enjoy!

Resources

• Sarcoidosis UK - Information, Support, Awareness and Research
• Asthma + Lung UK
• Action for pulmonary fibrosis

© North Bristol NHS Trust. This edition published June 2023. Review due June 2026. NBT002701

Antenatal and Newborn Screening for Sickle and Thalassaemia (SCT)

Background:

Haemoglobinopathies are a group of inherited blood disorders that fall into two main categories: haemoglobin variants, such as sickle cell, and thalassaemias. If a person is a carrier of the sickle cell or thalassaemia gene it can be passed onto the baby. All pregnant people in England who have accepted screening will have laboratory testing for haemoglobin variants and thalassaemia. If the mother is found to be a carrier, screening may also be offered to the father. 

Haematology Department:

The department of Haematology provides a Sickle Cell and Thalassaemia (SCT) Screening service for antenatal patients in North Bristol and offers a confirmatory service for the newborn screening provided by Clinical Biochemistry. For further information on newborn blood spot testing please see the following page (newborn-screening).

The SCT screening provided by the laboratory follows the government’s published  handbook for antenatal laboratories and handbook for newborn laboratories which set out interpretation and reporting guidelines, including which types of sickle and thalassaemia carrier states to report.
SCT testing on antenatal patients is undertaken on whole blood samples taken at booking, preferably before 10 weeks gestation. This allows for prenatal diagnosis (PND) to be offered to at risk women and couples by 12 weeks + 6 days of pregnancy. Early detection of SCT through screening allows for personal informed choice, timely counselling, clinical monitoring and preparation for those patients identified as having an “at risk” pregnancy.

As well as the general sample labelling requirements, it’s also necessary for the patients’ family origin questionnaire (FOQ) to be completed either on the reverse of the antenatal form or by following prompts when requesting on ICE. Our UKAS accredited laboratory currently screens approximately 7,000 pregnant people each year and confirms results for approximately 500 babies for the newborn screening laboratory.

The SCT screening programme is provided in close collaboration with health care professionals throughout the region
 

Analysis:

Initial screening is performed on our primary analyser using capillary electrophoresis (CE). 

Abnormal samples are then reanalysed using isoelectric focussing (IEF). IEF separates the proteins into bands allowing our skilled biomedical scientists to identify the types of haemoglobins.    

Quality Assurance:

Turnaround times (TATs), standards and key performance indicators (KPIs) are used to continually monitor the performance of the laboratory service.

The laboratory is accredited by UKAS under ISO15189 registration number 8066 and participates in UK NEQAS Quality Assurance Scheme.

Screening laboratories must be able to release > 90% of antenatal results, interim reports and requests for repeat tests in < 3 working days in accordance with SCT screening standards.

Developments:

We report our rare, affected babies (those with suspected severe disease) on a named patient basis, and this is to the newborn outcomes solution (which reports to NCARDRS)

https://www.gov.uk/government/publications/sickle-cell-and-thalassaemia-screening-newborn-outcomes-system/sct-newborn-outcomes-system-overview#national-congenital-anomaly-and-rare-disease-registration-service-ncardrs
https://nww.mdsas.nhs.uk/Newborn/

All patient leaflets are held centrally and are available on the government website: 
https://www.gov.uk/government/collections/screening-in-pregnancy-information-leaflets#sickle-cell-and-thalassaemia

Laboratory Visits:

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

Please see below  for responses to our most recent survey

Key Contacts for Haematology Laboratory

Dr Sophie Otton
Clinical Lead for SCT & Consultant Haematologist 
Via Haematology secretaries - Telephone: 0117 414 8401

Reginah Visser
Principal Clinical Scientist 

Jemma Cable
Clinical Scientist

Grace Van Der Mee
Lead Biomedical Scientist

Helen Izzard
Senior Biomedical Scientist

Pathology Sciences Laboratory
Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB
Email: NBTHaemoglobinopathyService@nbt.nhs.uk
Telephone: 0117 414 7121 / 0117 414 8356

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

Clinical advice & interpretation is available during working hours.

Q-Pulse Ref HA/WE/008 V3

Information for Healthcare Professionals

If babies are born before 32 weeks gestation or are admitted to a hospital specialist unit for other reasons, extra blood spot samples may be required to carry out the newborn screening tests. 

To ensure preterm infants are appropriately screened for CHT, all babies born at less than 32 weeks (less than or equal to 31 weeks + 6 days) should be offered a preterm repeat test at 28 days of age or discharge home, whichever is the sooner.

Babies less than 5 days of age should have a single circle bloodspot sample taken on admission/prior to blood transfusion to screen for SCD. The bloodspot card should be marked 'Pre-transfusion'.

Detailed instructions regarding sample collection from babies in specialist units can be found on pages 23-26 of 'Guidelines for Newborn Bloodspot Sampling'.

Access to Results

Designated clinicians will be informed immediately of any 'Suspected' results.

Certain healthcare professionals may access results via the Failsafe IT solution. If you are concerned that a baby has missed screening or that a sample has not arrived in the laboratory, please telephone or email us. Samples usually take several days to reach us in the post, although this is faster if a courier is used. One working day after they have been entered on our computer system they will appear on the failsafe shown as 'pending', these samples are undergoing analysis.

Please use the NHS number to search for babies, checking that the address shown matches your records as many babies have similar names, very similar dates of birth and surnames often change in the first few weeks of life.

Labelling the blood spot card

Points to remember:

• It is ESSENTIAL that the blood spot card is completed correctly with all the details of the baby whose blood is collected (including the NHS number). Samples received without an NHS number will not be processed.
• These details must be filled in BEFORE the heel prick is carried out, to make sure there is no chance of a mix-up.
• If there is an indication that any incorrect information may have been provided on a bloodspot card, you must inform the laboratory immediately.
• Do not assume that printed labels in the baby's child health record are accurate, it is important to check the details each time you use them.
• There is no need to indicate whether the baby is breastfeeding or bottle-feeding.

Information for parents

The NHS Newborn Blood Spot Test website includes information about each condition, FAQ's and links to further information.

The Screening Tests for You and Your Baby leaflet contains information about the blood spot screening test and the conditions it screens for. It is available in other languages.

Find out what happens to your baby's blood spot card.

Collecting the sample

A full guideline and quick reference guide are available here.

e-Learning for Healthcare has developed an e-learning module to support midwives and other sample takes in obtaining good quality newborn blood spot samples: https://www.e-lfh.org.uk/programmes/nhs-screening-programmes/

 of an acceptable quality sample, with correctly completed details. 

Transportation

The blood spots should be allowed to air-dry thoroughly, away from direct sunlight before placing in the transparent paper (Glassine) envelope provided (not plastic as this may cause the specimen to 'sweat') and sent, by first class post or courier on the day of collection, in a sturdy envelope.  If not possible, despatch within 24 hours of taking the sample. Despatch should not be delayed in order to batch cards together for postage.

 Clinical Guidelines

For guidance on hyperlipidaemia treatment guidelines and monitoring patients on lipid lowering therapy please see advice on Remedy

BNSSG Adult Vitamin D Prescribing Guidance

Blood Tests

Urine and Other Tests

• Biochemistry in Primary Care
• Clinical Updates
• General Biochemistry
• Endocrine investigations
• Toxicology and TDM
• Inherited Metabolic Disease

We are trialing Ambient Voice Technology in some Outpatient appointments 

From March 2026, we are running a 12-month trial of Ambient Voice Technology (AVT) in some of our Outpatient appointments. 

Ambient Voice Technology (AVT) is like having a smart helper that, with your permission, listens to you and your clinician’s conversation during your consultation, automatically turning the conversation into notes.   

This trial is starting with a small number of clinicians in Gynaecology, Urology, Neurology, Gastroenterology and Hepatology Outpatient clinics. 

If your clinic has the option to use AVT, you will be informed at the start of your appointment. We will only use AVT with your consent. If you choose not to consent to the use of AVT, your appointment will continue as normal. 

What is AVT?

AVT is a smart tool that helps your healthcare team take notes during your appointment. 

• It only listens to what you and your clinician talk about if you give consent, and it never records. 
• It captures your conversation in real time and turns it into notes and letters for your health record.  
• Your clinician checks everything to make sure it’s correct. 

You might have seen something like this if you’ve ever talked to your phone, used voice commands in a car, or asked a smart speaker to do something. 

What will happen if you say yes to AVT? 

• A microphone, mobile device, or laptop will listen to what you and your clinician say during your appointment.  
• Your appointment will feel the same, but your clinician won’t need to type as much – they can focus more on you.  
• The AVT captures your words into text straight away and creates a summary and clinic letter.   
• After your appointment, your clinician checks the notes and letters to make sure they are correct before adding them to your health record. 

Why are we trialing AVT? 

We want to see if AVT helps our patients and clinical teams. 

• It lets clinicians spend more time talking to you instead of typing notes. 
• It writes while you talk in real time, so your health records are more accurate and ready faster. 
• This could mean letters or referrals get sent to your GP or other healthcare services more quickly after your appointment. 

Your privacy is really important. At the start of your appointment, your clinician will tell you if AVT is an option. You can choose to have your appointment with or without AVT. 

Your information is always encrypted and securely handled meeting GDPR and NHS standards. Only authorised staff at the hospital access it.

Do you store recordings of my appointment?

Can I choose not to have AVT during my appointment?

Who can I contact if I have questions about AVT before my appointment?

More information

For details on how we collect, use and store personal information, including data collected via digital tools in outpatient settings, please visit our Privacy Policy and Data Protection webpage.

Introduction

You have been asked to follow a low insoluble fibre diet. This can help improve symptoms, give your bowel time to rest after surgery, or help prevent a blockage in your bowel. 

You may only need this diet for a short time. If your doctor says you need to follow it for longer than a month, we might suggest taking a daily multivitamin to make sure you get all the nutrients you need. 

If you have any questions or worries about this diet, ask your doctor or healthcare professional.

Types of fibre

There are different types of fibre in the foods we eat. The two main types are called "soluble fibre" and "insoluble fibre."

Soluble fibre

Soluble fibre mixes with water in your gut and turns into a gel-like substance that your gut bacteria can break down. It can help with both diarrhoea and constipation. Soluble fibre is usually safe for you to eat.

Here are some examples of foods with soluble fibre:

• Milled or ground oats, like Quaker Oat So Simple or Ready Brek.
• Fruit without the peel, seeds, or skin.
• Vegetables without the peel, seeds, or skin.

Insoluble fibre

Insoluble fiber is the "roughage" in our food. It does not get broken down by our body and helps make our stools bigger and easier to pass.

Here are some examples of foods with insoluble fiber:

• Wholegrain foods like brown or seeded bread, cereal, rice, pasta, and couscous.
• Skins of vegetables, fruits, beans, and pulses
• Pith, seeds, and stringy parts of fruits and vegetables.
• Nuts and seeds.
• Salad and leafy greens.

Removing insoluble fibre

Many foods, like some fruits, vegetables, beans, and lentils, have both soluble and insoluble fibre. To make these foods easier for you to eat, you need to remove the insoluble fibre.

Here’s how you can do that:

• Peel the skins and cook vegetables until they’re soft.
• Peel the skins and stew fruits until they’re soft.
• Peel and remove seeds, then blend vegetables into a smooth soup or sauce, or fruits into a smoothie.
• If you can’t peel or remove seeds, blend the fruit or vegetable and then use a sieve to strain out the “bits”.

Recommended foods and foods to watch

Meal ideas

Tips 

• High insoluble fibre foods include:
  • Nuts
  • Pips
  • Piths
  • Seeds
  • Skins on fruits and vegetables
  • Wholemeal/grain
  • Leaves
• If you cannot peel a fruit or vegetable, like raspberries, they’re not suitable - unless blended into a smooth consistency. Sieve any remaining bits out.
• Prepare a sauce as usual (e.g. with onions, garlic, peppers), then blend and sieve to remove large bits. Cook meat or meat alternatives separately, then add the blended sauce.
• Blend onions, garlic, and ginger, then freeze in portions using an ice cube tray to add to meals later.
• Batch freeze peeled vegetables to save time later.
• Onion, garlic, and ginger powder can be used instead of whole onions, garlic, or ginger.
• Salad alternatives:
  • Cooled white pasta with smooth pesto or a smooth tomato sauce (such as passata).
  • White rice or couscous with peeled and roasted root vegetables.
  • Peeled white or sweet potato salad with a smooth dressing.
  • Add protein like cheese (such as feta, halloumi) or egg.

© North Bristol NHS Trust. This edition published January 2025. Review due January 2028. NBT003820

AAC charities 

• Communication Matters 
• ISAAC 
• 1 Voice 
• Ace Centre  

Assistive technology charities 

• Ability Net 
• Everyone Can (formerly known as Aidis Trust) 
• Special Effect 

Others 

• Sequal Trust
• Digital Legacy Association. Information about end of life wishes related to digital assets. 

AAC software and apps

AAC Suppliers

Access

Other useful links