The staff at North Bristol NHS Trust (NBT) offers their condolences to you at this time.

We understand that you may have important personal and cultural requests about the care of your loved one; please let a member of staff know and we will do our best to help in any way that we are able.

We know that giving all the information in this booklet can look daunting but please do not worry. Take time to share this information with a trusted family member or friend. This booklet will help you when you have the quiet time and space to read through it.

Contents

Overview of steps you will need to take

Next of kin or another person acting for the deceased

What you will need to do first

Medical Certificate of Cause of Death (MCCD)

Role of the Medical Examiner Office

The coroner

Property

How to arrange and view your loved one after death

Tissue donation

Who can register a death?

Registering a death

Documents you will receive

Organisations you need to contact

People you might need to inform

Arranging a funeral

Further information and bereavement support

Overview of steps you will need to take

1. NBT (North Bristol NHS Trust) Patient Affairs officers will contact you via telephone the next working day following the death of your loved one.
2. Contact funeral director and start to make funeral arrangements.
3. Register the death.
4. Finalise funeral arrangements with the funeral director.

Next of kin or another person acting for the deceased

The Patient Affairs team will correspond with the person recorded in the hospital records as next of kin concerning
the administration of your loved one’s death. This can be any person designated by the deceased prior to their death and may or may not be a relative of the deceased.

If there is no designated next of kin, then this will usually be the closest relative or other person who will take responsibility for registering the death.

It can be important at this sad and difficult time that the next of kin keeps family members, or those close to the deceased, informed of what is happening.

It is important to read ‘Who can register a death?’ below.

What you will need to do first

Following the death of your loved one, you should receive a telephone call from the patient affairs team between 9am and 4pm on the next working day.

The Patient Affairs team will take some details from you, tell you what to do next and answer any questions you may have.

You are advised not to make a Register Office appointment until you have spoken to the Patient Affairs team.

If you have a query, you can contact the Patient Affairs Office at Southmead Hospital on 0117 414 0184, Monday to Friday, 8am – 4pm.

Please note that the office is not open Saturdays, Sundays or on Bank Holidays.

The Patient Affairs Office is located in the Sanctuary, Level 1, Gate 30 of the Brunel Building, Southmead Hospital.

Medical Certificate of Cause of Death (MCCD)

The Medical Certificate of Cause of Death (MCCD) is an important legal document, showing the cause of death. This must be signed by a doctor who was responsible for the medical care of your loved one while they were in hospital.

Doctors are not always able to complete the paperwork immediately, so it may be several days before the certificate is ready. In some cases, they may need to contact the Coroner’s Office which will delay the paperwork further.

Role of the Medical Examiner Office

North Bristol Trust uses a medical examiner system. This is a role which has been implemented into all NHS hospitals within England. The role of medical examiners (MEs) is to provide support for bereaved families and to improve patient safety.

The Medical Examiner’s Office will be able to share any feedback to the clinical team or request they review the notes to reflect on the care provided and consider if there is any learning to improve the care of patients in the future.

There are two types of medical examiner:

Medical examiners (ME)

Medical Examiners are independent senior medical doctors who are appointed to review all deaths that occur in hospital. They are specially trained in the legal and clinical elements of death certification processes.

They are here to check the information written on the Medical Certificate of Cause of Death (MCCD) is correct, and that any referrals that need to go to the coroner are made in a timely fashion to avoid any delays.

They scrutinise clinical notes and meet with the treating doctor to discuss the deceased’s care and the cause of death.

Medical examiner officers (MEO)

Medical Examiner Officers are a mix of clinical and nonclinical staff who have received special training in the role.
They assist the ME.

You will receive a call from a Medical Examiner or Medical Examiner Officers in the coming days. They will help you understand the wording used on the MCCD. You will have a chance to ask any questions you may have regarding the care of the deceased or their last illness. The Medical Examiner Officers will advise you how you can obtain the Death Certificate and other forms from the Registry Office.

The Medical Examiners Office will make reasonable attempts to contact the deceased’s Next of Kin. If you have any questions and have not been able to speak with the medical examiner, please contact the Patient Affairs team.

Once completed the death certificate will be delivered to the Bristol Registrars from the hospital by email (you do not need to collect the death certificate).

You will need to make a telephone appointment to register the death with the Bristol Registrars (telephone number 0117 922 2800) or complete an online form through the Bristol City Council Website: www.bristol.gov.uk/residents/births-deathsmarriages/deaths/register-a-death

The Medical Certificate of cause of Death will not be issued until the cause of death has been reviewed by the Medical Examiners Office or the Coroner’s Office.

The coroner

In some instances, the hospital doctor is legally required to discuss the death with the coroner. The coroner is
an independent judicial officer and are responsible for investigating deaths in circumstances such as:

• all sudden and unexpected deaths
• deaths where the cause is unknown
• unnatural deaths for example accident or suicide
• deaths that occur during or shortly after an operation
• deaths caused by industrial diseases
• deaths involving a bone fracture
• deaths from acute alcohol poisoning or drug related illnesses

Once information is obtained by the Coroner’s Office from the medical staff, a decision will be made as to whether or not a post mortem is necessary.

In many cases, permission will be given to issue a Medical Certificate of Cause of Death.

However, you should note that the post mortem procedure with the Coroner takes at least 3 working days to complete before the certification can be released and in these circumstances an appointment with the Register Office cannot be made until all documentation has been completed and issued.

The post mortem examination will usually take place within a week of the death at the Coroner’s Mortuary in Flax Bourton.

The Coroner’s Office will take over responsibility from the Patient Affairs Office and will be responsible for keeping you informed of what is happening and guiding you in the next steps that you should take.

The coroner does not require the consent of any other person for this to take place. Funeral directors should be advised about the post mortem and are usually happy to proceed with funeral arrangements.

You will be informed by the Coroner’s Office when they have sent paperwork to the Register Office so that you can make an appointment to register the death.

The Coroner’s Office can be contacted on 01275 461 920. Opening hours: 7.30am - 3.30pm, Monday to Friday.

Coroner’s inquest

In some circumstances the coroner will proceed to open an inquest.

The purpose of an inquest is to find out four facts.

• Who the deceased was?
• When, where, and how they died?

They will also record the medical cause of death.

You may be contacted by one of the coroner’s officers if an inquest has been opened. You may be asked to provide a statement about your loved one. The Trust will also provide the coroner with statements from those who cared for the deceased.

Once the coroner has considered this evidence, there may be a hearing. This is a fact-finding hearing, not to apportion blame, but to answer the above four questions. You will have the opportunity to ask questions.

The coroner will then record a conclusion, such as natural causes or suicide.

Whilst the aim is for this process to conclude within 6 months of the death, it can sometimes take longer. You will be kept up to date by the coroner’s office.

Property

If the deceased has property or clothing in the care of the Patient Affairs team which is not taken by relatives at the time of death, the Patient Affairs team will contact you to discuss arrangements for returning the property to you or the disposal of any unwanted property.

Jewellery (for example wedding rings, earrings) is usually left on the deceased unless family request otherwise and will go to the funeral director where it is removed if requested.

It is important that you agree the arrangements for the return or disposal of property with the Patient Affairs Office.

Any property not collected after 3 months will be disposed of without recourse to the Trust.

How to arrange to view your loved one after death

You may wish to come to the hospital’s viewing room to see your loved one. The viewing room is a separate room within the hospital Mortuary.

If this is something you wish to do, you can make an appointment with the Mortuary Team by telephoning 0117 414 0184 between 8am - 4pm, Monday to Friday, to arrange this. We do not currently offer viewings on evenings or weekends.

Alternatively, you may prefer to wait until the deceased is transferred to the care of the chosen funeral director.

On the rare occasions when the cause of death may be a criminal matter there will be restricted viewing. In these
circumstances, the police will advise.

Tissue donation

After someone has died it may be possible for their tissues to be donated to help others. Your loved one may have carried a donor card, be on the Organ Donor Register or may have discussed donation with you during their lifetime. Even if they did not, you may want to consider tissue donation at this time.

To ensure tissue transplants are as successful as possible, tissues can only be donated in certain circumstances.

• Eyes for Corneal Transplantation can be donated up to 24 hours after death.
• Heart valves can be donated up to 24 hours after death.

If you choose this for your loved one, they will be cared for with dignity and respect and their appearance will be restored. Tissue donation will not delay funeral plans.

You may be contacted by a specialist tissue donation nurse after someone dies to offer information about tissue donation. The nurse will explain the options available for tissue donation and answer any questions.

Please remember, tissue donation is entirely voluntary. If you would like further information, please contact NHS Blood and Transplant National Referral Centre on 0800 432 0559. Please leave your name and contact number and a tissue donation nurse will call you back promptly.

Alternatively, you may ask a doctor, or nurse involved in the care of your loved one to contact the appropriate person on your behalf.

Who can register a death?

You can register the death if you are:

• A relative
• Someone present at the death
• An administrator from the hospital
• The person making arrangements with the funeral directors

Registering a death

Once the Medical Certificate of death has been issued by the doctor and emailed to the registrar, you will need an
appointment to register the death with the Bristol City Council Registrars.

The whole process will be completed in person at the Registrar’s office at Southmead Hospital or at a local Registrar’s office close to you.

You will need to tell the registrar:

• The person’s full name at the time of death
• Any names previously used e.g., maiden name
• The person’s date and place of birth
• Their last address
• Their occupation
• The full name, date of birth and occupation of a surviving or late spouse or civil partner
• Whether they were receiving a state pension or any other benefits

Documents you will receive

When you register the death, you will receive the following:

• A Certificate for Burial or cremation (the ‘green form’), this gives permission for burial or an application for cremation.
• A Certificate for the Department of Work and Pensions Benefit (form BD8) – you may need to fill this out and return it if the person was receiving a state pension of benefits.
• There is an opportunity to purchase death certificates – these will be needed for sorting out the person’s affairs with the bank, insurance companies, private pensions etc.

Once you have registered the death you can inform your chosen funeral director that the death is registered so that arrangements can now proceed.

If the death has been referred to the coroner, you will not be able to register the death until the registrar has received a notification from the coroner’s office.

Organisations you need to contact

Tell Us Once

You will need to report the death to various organisations and government departments. Bristol City Council runs a service called Tell Us Once, which will help you to contact these. In doing so you will not have to pay for extra death certificates for each organisation they contact. There is a cost in providing the certificate to organisations who are not contacted by the council.

If you wish to use this service, inform the registrar when you attend the Register Office, and the options will be explained to you. The registrar will show you what to do and this is a service many people find invaluable. You will be able to access this service by telephone or online once you have registered the death.

If you choose not to use the Tell Us Once service, you will need to report the death to various organisations and
government departments.

The following are organisations which may be appropriate to notify.

Local councils

• Housing Benefit Office
• Council Tax
• Collection of payment for council services
• Libraries
• Electoral Services
• Blue Badges
• Adult Services
• Children’s Services
• Council Housing

Department for Work and Pensions (DWP)

• Pension, Disability and Carers’ Service
• Jobcentre Plus
• Overseas Health Team

Revenue and Customs

• Child Benefit
• Child Tax Credit and Working Tax Credit
• Personal Taxation

Identity and Passport Service

• Driver and Vehicle Licensing Agency
• Ministry of Defence
• Service Personnel and Veterans Agency
• War Pensions Scheme

People you might need to inform

Please ask a member of staff for a printed copy of this patient leaflet if you would like a checklist to complete.

• Family
• Friends
• Healthcare providers, i.e. optician, dentist, GP
• Bank or building society, credit card providers
• Premium bonds, long term savings companies (ISAs)
• Anyone holding money for the deceased
• Social Services such as home help or care
• Previous/current place of work (occupational pension), trade unions
• Executor of the estate (Will)
• Insurance Companies (car, home, life insurance)
• Residential or nursing home
• Landlord or housing agency
• Mortgage company
• Utility companies (water, electric, gas, phone, internet, TV licence, Internet)
• Hire purchase companies
• Post Office (to redirect mail)
• Cancel any upcoming payments
• Transport (to day centres or clubs)
• Deliveries (milk, food boxes, newspapers)
• Return of any borrowed equipment (medical or social)
• Religious organisations (faith leaders)
• Stop any junk mail

Arranging a funeral

Before going ahead with any arrangements, it is advisable to check whether the deceased person left a Will and any instructions for the funeral.

If you are not the next of kin (nearest relative) or executor, you should check with the next of kin or executor that you have the authority to proceed.

Most funeral directors are members of one of 2 trade associations:

• National Association of Funeral Directors (NAFD)
• Society of Allied and Independent Funeral Directors (SAIF)

Member firms must provide you with a price list on request and cannot exceed any written estimate they give you without your permission.

Most people would probably require the funeral director to provide the following services as a minimum:

• Make all necessary arrangements
• Provide appropriate staff
• Provide a suitable coffin
• Transfer the deceased from the place of death to the funeral director
• Care for the deceased prior to the funeral
• Provide a hearse to the nearest cemetery or crematorium
• Arrange for burial or cremation as appropriate

Embalming, viewing of the deceased, or providing a limousine for mourners are optional extras. Discuss these fully with your funeral director and make sure you receive an itemised written quotation.

Funeral costs for the same services may vary considerably from one funeral director to another.

It is advisable to get more than one quote to compare costs and services. Funeral directors should provide detailed price lists for you to take away. Disbursements are fees paid to others, for example doctors (for cremation forms), a minister, newspaper announcements, flowers, and crematorium. Ask the funeral director for a written quotation detailing all these fees.

In addition, it should be remembered:

• When you arrange a funeral, you are responsible for paying the bill.
• Funeral payments are recoverable from the deceased person’s estate and banks are obliged to release money to pay for funeral costs when requested.
• It is recommended that the funeral is held within 3 weeks of death to prevent deterioration of your loved one.

If you receive certain benefits from the Department of Work and Pensions you may be entitled to some assistance towards the funeral expenses of your relative. For further information please contact the nearest Jobcentre Plus Centre.

A bereavement payment or bereavement allowance may be made in certain circumstances if you are the partner or spouse of someone who died whilst employed. These are dependent upon National Insurance contributions and other conditions. Please contact Jobcentre Plus to find out more.

Further information and bereavement support

The time ahead may be a very difficult one for you. If you have any further questions, a member of the chaplaincy team (0117 414 3700) or your GP would be happy to help.

If you would like to discuss any aspect of your loved one’s care, please contact the ward to arrange an appointment with a member of the medical/nursing team.

Useful websites

GOV.UK - What to do when someone dies

www.gov.uk/after-a-death/overview

Age UK - What to do when someone dies

www.ageuk.org.uk/money-matters/legal-issues/what-to-do-when-someone-dies/what-to-do-firstwhen-someone-dies/

Bristol City Council Bereavement Support

www.bristol.gov.uk/births-deaths-marriages/bereavement-support

GOV.UK - Get help with funeral costs

www.gov.uk/funeral-payments

How to contact us

Patient Affairs Office

0117 414 0184

If you or the individual you are caring for need support reading this leaflet please ask a member of staff for advice.

If you’re an overseas visitor, you may need to pay for your treatment or you could face fraud or bribery
charges, so please contact the overseas office: Tel: 0117 414 3764 Email: overseas.patients@nbt.nhs.uk

© North Bristol NHS Trust. This edition published April 2023. Review due April 2026. NBT002506

 

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

 

 

NBT002316 Instructions for urine collection for Cystinuria

 

NBT002424 Instructions for 24 hour urine collection

 

 

 

Now that Infection Prevention & Control guidelines have been relaxed in line with the Government’s “Living with Covid-19” guidance, members of the public and staff are able to attend our Trust Board meetings in public. If you would like to attend, please let us know by emailing trust.secretary@nbt.nhs.uk and we can provide details of the location, and print papers if required. If you wish to ask a question of Trust Board, please submit it in writing follow the process set out here.

The Trust Board meets in public at 10am.

•  Thursday 26 May 2022
• Thursday 28 July 2022
• Thursday 29 September 2022
• Thursday 24 November 2022
• Thursday 26 January 2023
• Thursday 30 March 2023

We will continue to record each Trust Board meeting that is held in public, and the recording will be available for viewing for two months following the meeting until the next meeting’s recording is uploaded.

 

Download Integrated Performance Reports (IPR):

Download Meeting Papers:

 

With over 15 years of commercial and non-commercial research, the Respiratory Research team led by Professor Maskell is one of the largest and most successful clinical and academic pleural research teams in the UK.

For nearly a decade they have been designing and delivering practice-changing clinic trials, improving the lives of patients with mesothelioma, pleural infection, and pneumothorax.

They have tested new devices designed to manage recurrent pleural effusions and pneumothorax, including a first in human trial which led to an international multi-centre randomised controlled trial (SEAL-MPE trial).

The multidisciplinary team includes highly skilled and motivated research nurses, managers, clinical research fellows and clinical academics. The team has also successfully been awarded research grants of more than £5million.

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

Current Studies:

CONTENTed study: Characterisation Of Neuroimaging and wellbeing over Time in severe EosiNophilic asthma Treated with mepolizumab.

UK Lung Volume Reduction: Multi-centre Observational Study

Pleural Antibiotic Concentrations Informing Treatment (PACT) Study

TARGET: Reducing repeat pleural biopsies in suspected cancer

The effectiveness and risks of Treating people with Idiopathic Pulmonary fibrosis with the Addition of Lansoprazole (TIPAL)

This page is a guide to help you understand some of the current treatments used to treat early inflammatory arthritis.

What is combination DMARD therapy?

On diagnosis with inflammatory arthritis, it is common practice to be started on some of the medications in this leaflet, either individually or in combination, to reduce pain, swelling and stiffness in your joints.

It may take 3 - 4 months before you start to feel the benefit of these medications (6 or more weeks for Leflunomide). Steroids should provide more immediate (but short term) relief.

Your doses may be increased or decreased gradually at clinic appointments or new drugs may be added or taken away from your regime.

You will be given the first prescription (for 1 month duration) from the hospital. Further supplies of your medicine should be obtained from your GP. It is important you do not run out of your medication.

Keep all medicine out of the reach of children.

If you buy medicines from your local pharmacy, tell the Pharmacist you are on this medication.

Methotrexate – Once a week only

• This is a weekly medication, which should be taken on the same day each week.
• You should only be given 2.5mg strength tablets to make up your dose (e.g. a dose of 15mg would be six x 2.5mg tablets taken together, once a week).
• You will be prescribed another tablet, folic acid, which you will be advised to take on a particular day or up to 6 out of 7 days, but it should NEVER be taken on the same day as your methotrexate.
• Report the onset of sore throat, bruising, mouth ulcers, nausea, vomiting, abdominal discomfort, dark urine or shortness of breath immediately.
• If you do not tolerate the tablets, your clinician may recommend switching to an injectable version.

Sulfasalazine

• This is a medication that is usually taken twice a day and may colour your urine orange.
• You may be given tablets with an enteric coating (which should be swallowed whole and not taken at the same time as indigestion remedies) or plain tablets.
• The dose will be increased gradually at the beginning. The usual starting regime is:

Sulfasalazine starting regime

500mg tablets	Morning	Evening
Week 1	One tablet
Week 2	One tablet	One tablet
Week 3	Two tablets	One tablet
Week 4 (onwards)	Two tablets	Two tablets

Hydroxychloroquine

• This medication is usually taken once or twice a day, with or after food; the dose depends on your body weight and disease activity.
• You will require baseline and ongoing annual eye checks at your high street optometrist. When you have been on treatment over 5 years (or earlier if you have additional risk factors) you will be referred to have an ophthalmic (eye) examination at a specialist hospital; your clinician will discuss this with you.

Leflunomide

• This is usually a once daily tablet.
• You will need to have your weight and blood pressure checked at each monitoring visit.

Corticosteroids

• You may be given prednisolone tablets; your dose will be made up of a combination of tablets which should be taken together in the morning as a single dose and should be taken with or after food. Do not stop taking prednisolone tablets suddenly, without advice from your clinician.
• You may be given a methylprednisolone depo injection (Depo-Medrone) which is a long acting injection into the bottom muscle. This can also be arranged to help with a flare up by calling our advice line service.
• You may be brought in to our medical day case unit to receive a methylprednisolone intravenous (drip) infusion.
• Your consultant may choose to inject your most affected joints with a steroid directly.
• If you are prescribed corticosteroids, you should usually be supplied with two different steroid cards: a ‘Steroid Treatment Card’ (blue) and a ‘Steroid Emergency Card’ (red). If you are not given these, it may be that you do not require both on this occasion but please check with your clinician.

Other advice

DMARD therapy should not routinely be stopped for surgery although individualised decisions may be made depending on the type of surgery.

During a serious infection (if you require hospital admission and / or antibiotics given via a drip infusion), your methotrexate, leflunomide or sulfasalazine should be temporarily discontinued until you have recovered from the infection.

More information about the drugs is available via www.versusarthritis.org/ and National Rheumatoid Arthritis Society (nras) leaflet Medicines in Rheumatoid Arthritis (including information about side effects).

Blood monitoring

These drugs will need regular blood monitoring as stated in your clinic letter. Your GP can also check the monitoring requirements on the BNSSG website.

Routine blood monitoring includes full blood count (FBC), renal function (SeCr / eGFR), and liver function tests (LFTs).

Frequency

For new treatment

Routine blood tests every 2 weeks until on stable dose for 6 weeks, then every month for 3 months, then every 12 weeks.

Following a dose increase

Routine blood tests every 2 weeks until on stable dose for 6 weeks, then revert to previous schedule.

Exceptions

Sulfasalazine – standard monitoring schedule for 12 months then no routine blood tests required (unless combined with other treatment).

Hydroxychloroquine – no blood tests required (unless combined with other treatment).

Methotrexate in combination with leflunomide – continue on monthly monitoring longer term.

Preparation for your appointments

We want you to be active in your healthcare. By telling us what is important to you and asking questions you can help with this. The three questions below may be useful:

1. What are my options?
2. What are the possible benefits and risks of those options?
3. What help do I need to make my decision?

References

Ledingham, J., Gullick, N., Irving, K. et al., on behalf of the BSR and BHPR Standards Guidelines and Audit Working Group, 2017. ‘BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs’, Rheumatology, 56 (6) p865–868. Available at: doi.org/10.1093/rheumatology/kew479.

National Rheumatoid Arthritis Society (NRAS) (2017). Medicines in Rheumatoid Arthritis. Available at: nras.org.uk/product/medicines-in-rheumatoid-arthritis/

Versus Arthritis. Treatments: Drugs. Available at: www.versusarthritis.org/about-arthritis/treatments/

Rheumatology DMARD medication record form

A Rheumatology DMARD medication record form (compliance chart) is available on the printed copy of this patient information leaflet (NBT003100). Please ask your clinician if you would like a paper copy to complete.

It is important that you update your medication record form regularly and after any medication changes (and specify the date it has been updated).

How to contact us

Rheumatology Advice Line

0117 414 0600

Ask three questions

Preparation for your appointments

We want you to be active in your healthcare. By telling us what is important to you and asking questions you can help with this. The three questions below may be useful:

1. What are my options?
2. What are the possible benefits and risks of those options?
3. What help do I need to make my decision?

If your arthritis is not well controlled on conventional synthetic disease modifying anti-rheumatic drugs (csDMARDs), your treatment may be escalated to either a biologic disease modifying anti-rheumatic drug (bDMARD or biologic) or targeted synthetic disease modifying anti-rheumatic drug (tsDMARD) by your rheumatology clinician.

One of the Rheumatology Specialist Nurses or the Specialist Pharmacists will already have discussed with you which medicine you will be taking.

This page has been created to help you remember the important key information in relation to your medicine.

Contents

Section 1 - Choice of treatments

Section 2 - Monitoring

Section 3 - Infections

Section 4 - Vaccinations

Sections 5 - Pregnancy and breastfeeding

Section 6 - Surgery

Section 7 - Side effects

Section 8 - Dose reduction

Section 9 - Home delivery and self-administration

Section 10 - Travel

Section 11 - Contact information

1. Choice of treatment

What are bDMARDs?

bDMARDs are a group of medications that are used to treat arthritis (such as rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis).

These medicines can decrease the amount of inflammation you have and reduce the damaging effects of your arthritis on your joints.

There are now quite a few bDMARDs available to treat different types of arthritis; which medicine you have been prescribed may depend on the type of arthritis that you have or another medical condition at the same time as your arthritis that might make one treatment more appropriate than another.

At the time of writing, bDMARDs used for different conditions include:

• abatacept
• adalimumab
• anakinra
• belimumab
• certolizumab pegol
• etanercept
• golimumab
• guselkumab
• infliximab
• ixekizumab
• risankizumab
• rituximab
• sarilumab
• secukinumab
• tocilizumab
• ustekinumab

However more are becoming available very often.

bDMARDs can be given either as an injection into the layer of fat just underneath the surface of your skin (a subcutaneous injection) or by a drip into your vein (intravenous infusion).

If you have a subcutaneous injectable medication you can be taught how to do this yourself at home or someone can be taught to give you the injections, such as a family member.

If you are having an intravenous infusion you will need to come to the Medical Day Care Unit in Southmead Hospital which is located on Level 1 in Gate 5 of the Brunel building.

What are Biosimilar Medicines?

Some of the bDMARD medicines listed above are now available in the UK as similar versions made by different companies, because the patent (allowing one company to make the product exclusively) has expired.

These different versions of existing bDMARDs are known as ‘biosimilars’ because they are deemed to be sufficiently similar (in terms of safety and effectiveness) to the original product.

Switching between biosimilar brands should not affect the safety or the effectiveness of your medicine.

Switching patients to the most cost-effective version of bDMARD allows the NHS to treat more patients with these expensive therapies.

NHS England may ask us to change the brand of bDMARD medication you are prescribed from time to time and we will discuss this with you.

What are tsDMARDS?

tsDMARDs are targeted synthetic therapies.

Like biologic medicines, they target specific parts of the immune system, however they are not made from living cells. They are smaller chemical drugs and can usually be taken by mouth.

There are now quite a few tsDMARD medicines available to treat different types of arthritis; which medicine you have been prescribed may depend on the type of arthritis that you have or your other relevant medical conditions.

At the time of writing, this group of medicines include:

• apremilast
• baricitinib
• filgotinib
• tofacitinib
• upadacitinib

But others are going through approval steps so may be available soon.

How do we help you decide which b/tsDMARD is the best for you?

When your consultant or clinician decides it would be appropriate to start a b/tsDMARD therapy, we will usually invite you to a clinic appointment with the Rheumatology Specialist nurse or Rheumatology Specialist Pharmacist to carry out your baseline assessments (this usually includes a joint examination and blood tests) and talk to you about your new treatment options.

The Nurse or Pharmacist will complete some paperwork with you and discuss the main symptoms associated with your condition, your other medical problems, previously tried therapies and any patient preferences you might have.

Once we have discussed your condition and preferences, we will look at the most cost-effective treatment to suit your needs.

We will support you to make a shared, informed decision about the most appropriate treatment for you.

2. Monitoring

Will I need any special monitoring whilst taking a b/tsDMARD?

This depends on whether you take another medication, such as methotrexate, with the b/tsDMARD medicine.
If you are taking another medication with the b/tsDMARD medicine

If you are taking another medication with the b/tsDMARD medicine

You should be having regular blood tests via your GP to monitor this, and you will not need any different or additional blood tests (unless we tell you). You need to phone your GP surgery to arrange these blood tests.

If you take the b/tsDMARD medicine on its own (monotherapy)

• We usually ask you to have blood tests for full blood count, liver function and kidney function every 3 months for the first year and then every time you are seen for a review by the Rheumatology Team (usually every 6 months).
• For some b/tsDMARDs, the monitoring schedule might be different to this and we will tell you if this is the case.
• If you have a remote consultation (e.g. telephone or video review), we may arrange for you to have your blood sample taken at your GP surgery, but we tell you and advise how we will check the results.
• We may ask you to contact our rheumatology advice line (by email or telephone) to let us know you have had your blood sample taken so we can look out for the results.
• We need to review your blood test results before prescribing your medicines. We will not be able to prescribe your medicines if you have not had your routine blood test.

Will I need to be seen in the hospital clinic for regular reviews whilst taking a b/tsDMARD?

Once you have started treatment, we will usually give you a call after a couple of months to see how you are getting on with your new medication. We will then invite you to attend a face-to-face appointment to check your joints and see if you are responding to your new treatment. This appointment will be either 3, 4, 5 or 6 months after starting treatment, depending on which treatment you are on.

You will then be followed up routinely every 6 months.

Your review appointments may be face to face or in our Remote Therapy Clinic (RTC). This can be via telephone, video, or occasionally we may be able to complete a virtual review which means we have checked your hospital records and blood tests and have deemed it safe to prescribe further medication without speaking to you, but we will always write to you to let you know if this is the case.

If you feel you need to be seen sooner than your scheduled appointment or if you feel you need to be seen face-to-face rather than remotely, please contact us via the rheumatology advice line; you do not have to wait until your scheduled appointment.

It is very important that you do attend regularly for reviews with your Rheumatology Team as the prescriptions of the b/tsDMARD medicines are based on your hospital appointments – if we do not review you in clinic (face-to-face or remotely), we will not be able to prescribe more b/tsDMARD medicine until we have seen you.

It is really helpful for us to understand how you are responding to your b/tsDMARD medication.

Some patients are able to track their symptoms, disease activity and overall wellbeing on a disease activity tracking smartphone application. If you are not already using this but are keen to do so, please contact our rheumatology team so we can register you for this service (free of charge).

If you are expecting to be seen by the hospital but do not receive an appointment letter, please get in touch with us to check you have been booked into an appointment.

What happens if my new b/tsDMARD treatment doesn’t work?

It usually takes about 3-6 months for your b/tsDMARD to be fully effective, although some patients feel the benefit much sooner. We might prescribe you some other medication to help with symptoms whilst waiting for your b/tsDMARD to have an effect.

If your new medication doesn’t help improve your symptoms, we may need to stop your medication, allow for it to come out of your system and decide on an alternative treatment.

Sometimes, your medication will work very well at the beginning but might lose effect over time. If this happens, we may need to stop your medication, allow time for it to come out of your system and chose an alternative treatment.

It is important that you attend your follow up appointments so we can check how well your medication is working. Please always be honest with how your symptoms are feeling.

3. Infections

When not to have your b/tsDMARD and managing infections

You should not have your b/tsDMARD medicine if you are unwell in any way, if you are currently taking antibiotics or if you have just had or are having any surgery in the next few weeks.

You can use the checklist below to help you to decide if it is safe for you to give the injection or to help you decide if you should contact us for further advice before your infusion.

Do you have any of the following?

• Sore throat
• Cough / cold
• Diarrhoea and/or vomiting
• High temperature
• Burning or stinging when passing urine
• Wounds or cuts that could be infected
• Flu type symptoms
• Feeling out of breath
• Dental treatment such as a tooth extraction or a root canal filling.
• Having an operation – see surgery section below

If you say ‘yes’ to any of the above you should contact us on the rheumatology advice line for further advice before giving your injection or before attending your next appointment for an infusion.

After an infection

It is usually safe to restart your b/tsDMARD medication when you are feeling well and you do not have any signs of symptoms of an infection.

If you have had antibiotics

We recommend not starting treatment until at least 48hrs after completing the course of antibiotics as long as you are well.

If you restart your b/tsDMARD therapy on a different day to your usual injection day, this will become your new injection day and you need to count the dosing interval from this day. Never shorten the gap between doses.

If you develop chicken pox, shingles or come into contact with someone who has chicken pox or shingles (and you have not had it before), stop your b/tsDMARD and seek medical attention.

4. Vaccinations

Can I have any vaccinations whilst taking a b/tsDMARD?

• Whilst you are taking a b/tsDMARD medicine you cannot have any live vaccinations, such as the yellow fever vaccination.
• Your GP or practice nurse can discuss the possible risks and benefits of any vaccinations with you and advise which vaccinations are live.
• If you are in your 70s and are offered the shingles vaccination, please check with the GP surgery that they are offering the non-live shingles vaccine which is safe for you to have. You cannot have the live shingles vaccine.
• The yearly flu vaccination, 5 yearly pneumonia vaccination and Covid vaccinations are not live and do not interfere with b/tsDMARDs. We recommend you have these when offered.

5. Pregnancy and breastfeeding

Can I plan for pregnancy and can I breastfeed whilst taking a b/tsDMARD?

Although we have more information to suggest some bDMARD therapies are safe to use in specific trimesters of pregnancy, it is generally advisable that you do not become pregnant whilst on a b/tsDMARD medicine unless you have discussed this with your rheumatology consultant first and been told it is safe to continue taking your medicine.

• Your rheumatology consultant will be able to discuss which treatment is most recommended for your individual circumstances and when the treatment needs to be stopped (or whether you require it to continue).
• This will also impact whether or not your baby can have live vaccines between birth and 6 months old. Generally, you should make sure that you use reliable contraception whilst taking a b/tsDMARD medicine.
• If you unexpectedly become pregnant whilst taking a b/tsDMARD, please discuss this as soon as possible with your rheumatology consultant.
• Some of the established bDMARD therapies can be continued during breastfeeding, but again this needs to be discussed with your clinician.

Can I father children whilst on b/tsDMARDs?

Although it is thought that a number of therapies can be considered safe in men who wish to father children, it is advisable that you discuss this with your rheumatology consultant first and check it is safe to continue taking your medicine.

This decision is made on your personal needs and your thoughts and beliefs are taken into consideration before making the decision; this is to make sure that any decision made is the best one for you and your family.

You should make sure that you use reliable contraception whilst taking a b/tsDMARD medicine.

6. Surgery

What happens if I need surgery?

For planned surgery

You will need to come off your treatment for a certain amount of time beforehand to lower your infection risk with your surgery. Please contact us on the rheumatology advice line well in advance if your surgery so we can advise on the appropriate time to stop your b/tsDMARD.

For emergency surgery

It is important you let the surgical team know when you last had your dose of b/tsDMARD in case you need some preventative antibiotics.

You should also carry your b/tsDMARD alert card around with you.

Following surgery

You can usually restart your b/tsDMARD when your wound shows evidence of healing, any sutures/staples are out, there is no significant swelling, redness or drainage and there is no ongoing nonsurgical site infection, which is typically around 14 days.

7. Side effects

What should I do if I get side effects from my medication?

The information leaflet provided with your medication will list the potential side effects with your specific b/tsDMARD and some information on the likeliness of them occurring.

• Generally, the most common side effects are changes to your blood tests (which is why we monitor them) or increased frequency or severity of infections (which is why it is important that you don’t inject if you have an infection – see when to not have your injection section).
• There is no conclusive evidence to suggest an increased risk of cancer with bDMARDs, but data regarding risk of skin cancers are less clear and we recommend using a high SPF sun cream with UVA/B and 5* rating.
• If you are on a tsDMARD, it is important to report any signs or symptoms of a blood clot, for example chest pain, breathlessness, coughing up blood, leg pain, tenderness or swelling in your thigh or calf.
• You may experience injection site reactions to medicines you inject yourself. Applying a cold compress can help. Usually this reduces when you get more experienced at injecting. If you have a severe injection site reaction or a reaction hasn’t gone away when you are due to inject again, please get in touch with us as you may need to stop your treatment.
• Once you have had your first dose of b/tsDMARD, it is important that you let your GP surgery know you have started your treatment in case you have any reaction to your first or subsequent doses.
• It is important you let you Rheumatology Team know if you are suffering with side effects to your medication.
• If you develop any anaphylaxis or severe side effects, stop the medication and seek urgent medical attention (e.g. contact the usual out of hours emergency medical care).

8. Dose reduction

How long will I be on my b/tsDMARD medication?

• If you are responding to treatment with low disease activity or in remission after being on treatment for two years, we might look at reducing some of your medication.
• Firstly we would want to stop any remaining steroids and make sure you are on the optimal dose of csDMARD.
• We would then invite you to consider our dose reduction program known as Biologics Treatment Reduction by Interval Management (BTRIM). This is a step-wise dose reduction program.
• We will recommend slowly stretching out the gap between your injections in a very controlled way and allow you to decide when you are ready to stretch the gap out further or decide if you need to go back to the previous effective dose.
• We will provide you with written information about this and clears steps of action to take if your symptoms worsen.
• We will not supply you with less medication when you are trialling dose reduction so you will be able to return to standard dosing if preferred.
• Not all patients are able to come off treatment completely but many patients are able to stretch out the gap between their injections to reduce their overall dose.
• If you are keen to reduce the dose of your medication after 2 years on treatment and this hasn’t been discussed with you, please speak to your clinician at your appointment.

9. Home delivery and self-administration

Additional information for self-injectable bDMARDs and oral tsDMARDs, supplied by home delivery

The rest of this page focuses on the important parts to remember if you are taking an injectable form of bDMARD or oral tsDMARD medicine that is supplied via a home delivery provider.

How do I get supplies of my medicine?

Your b/tsDMARD medicine can only be prescribed by your Rheumatology team through the hospital. This means that you won’t be able to collect it with your usual medicines from your pharmacy, chemist or GP.

We use a Home Delivery Service who will deliver your medication to you at home. If you wish, you may arrange with them to deliver your medication to an alternative address (e.g. work address) if this would be more suitable (but this cannot be a local GP or community pharmacy).

Your Rheumatology Specialist Nurse or Specialist Pharmacist can give you details about which home delivery service will be delivering your medication.

Do my medicines need to be stored in the fridge?

• bDMARDs generally need to be kept in the fridge (between 2-8°C).
• Occasionally they can be kept out of the fridge for a short duration (depending on which injection you use).
• When you receive delivery of your first injections, they should be put in the fridge and until you are informed that a nurse is coming to show you how to inject your first dose.
• We recommend taking your injection out of the fridge 30 minutes before you inject it to reduce the change of it stinging when you inject it.
• tsDMARDs do not need to be kept in the fridge.

What happens if a bDMARD (biologic) medicine is left out of the fridge for too long or the fridge breaks down?

If this happens then you will need to contact the homecare delivery company who deliver your medicine and let them know so that they can arrange for the affected medication to be replaced.

You will also need to let the Rheumatology department know by calling the rheumatology advice line in case we need to provide the homecare delivery company with another prescription.

In some circumstances, we may advise that one or two injections can still be used, but we will provide personal instructions to you depending on your situation.

tsDMARD medicines do not need to be stored in the fridge.

What happens if I forget to give an injection or take a tablet?

If you forget to give an injection then you should give a dose as soon as you remember and then make sure that you take the next dose at the correct interval to make sure that you do not give the next dose too early.

For further advice on the specific medicine you are taking please contact the Rheumatology Advice Line.

If you forget to take a tablet (tsDMARD), do not take a double dose to make up for the forgotten dose. Take your next tablet at the usual time and continue as before.

What happens if something goes wrong when giving an injection (bDMARD)?

If the pen or syringe slips when you are giving your injection or if the device does not work properly for any reason please contact us on the Rheumatology Advice Line for more help on the particular problem you have experienced.

Do not try and inject another dose in case some of the first dose was given.

What should I do if the pen or syringe is faulty?

If you think that your pen or syringe is faulty for any reason please make a note of the batch number and expiry date (this information can be found on the box containing your medicine).

Please report any faulty pens or syringes to your home care delivery company.

How do I dispose of my injections?

You will be supplied with a sharps bin for disposing of your injections. When your sharps bin is full with used pens/syringes, contact your homecare company to arrange a collection for disposal.

10. Travel

Can I take my biologic/tsDMARD medicine on holiday with me?

It is possible to travel (either abroad or within the UK) with your b/tsDMARD medicine, but you will need to plan ahead.

• Airlines – ask your airline company in advance whether you can carry your medicine in your hand luggage (do not place your medicine in any checked in luggage as the baggage area is too cold).
• Carry documentation with you to explain why you need to take the medicine with you. You can ask the home delivery company to provide you with a letter for this purpose and we recommend taking your most recent clinic letter with you. You can also call us on the rheumatology advice line if you are struggling to get the suitable letter. Please make sure that you allow enough time between letting us know and us being able to post the letter to you before you travel.
• As a general rule, all biologic medicines should be stored in a refrigerator at temperatures between 2 and 8°C. Please contact us on the Rheumatology Advice Line for advice on how to safely transport your individual medicine.
• Please let us know in advance if you are planning to travel, so we can make sure you have sufficient supplies of medication.
• We can also provide extra advice about reducing the risk of infection when travelling.

11. Examples of who to contact

Contact your homecare provider

If you:

• have any problem with deliveries
• run out of supplies
• leave medication out of the fridge by mistake (you will also need to contact the rheumatology advice line)
• have a faulty pen or syringe
• have a full sharps bin that needs collecting
• need to change your delivery address

Contact the rheumatology advice line

If you:

• have any questions about your medication
• have any side effects
• have run out of medication and your homecare provider are telling you they do not have a prescription
• are unsure whether you should have your b/tsDMARD (e.g. if you feel unwell)
• feel you need to be seen sooner than your scheduled appointment or would like to change a remote consultation to be seen face-to-face
• leave medication out of the fridge by mistake (you will also need to contact the homecare provider)
• are expecting to be seen by the hospital but have not
• received an appointment letter
• want to plan a pregnancy
• feel your medicine has stopped working
• you are planning a holiday

Contact your GP

To arrange your blood tests and let them know once you’ve had your first dose of b/tsDMARD.

Contact emergency care (e.g. GP, 111, A&E)

If you have an allergic reaction to your medication or severe side effect.

Glossary of Terms

Subcutaneous injection

An injection using either a syringe or a pen injection device. The injection is given into the small layer of fat just underneath the surface of the skin.

Intravenous infusion

Medication which is given slowly through a needle in your vein.

Biosimilar medicines

These are different versions of existing biological medicines, thought to have similar effectiveness and safety, brought out because the patent (allowing one company to make the product exclusively) has expired.

Monotherapy

This is a term which is commonly used when patients have just one medicine to control their arthritis.

Dental extraction

Removal of a tooth, which would leave a hole in the gum and may become infected.

Root canal filling

Filling material is placed in the canals and the tooth is sealed with a temporary filling to protect it from infection. Then a crown is usually placed over the tooth to seal and protect it from recontamination and future damage.

References

www.medicines.org.uk

www.rheumatology.org.uk

www.versusarthritis.org/about-arthritis/

How to contact us

Rheumatology Advice Line

Telephone: 0117 414 0600

NHS Out of Hours Service

111 (Monday to Friday, 6.30pm - 8am, all day weekends and Bank Holidays)

Rheumatology Advice Line

rheumatologyadviceline@nbt.nhs.uk

Living With app

Contact the rheumatology advice line to sign up.

The FAST MRI research programme has been designed to find the most aggressive form of breast cancers sooner.

Early breast cancer detection and diagnosis saves lives. The NHS Breast Screening Programme offers women aged 50-70 years a mammogram every 3 years. By detecting breast cancers before they can be seen or felt, breast screening already saves about 1,300 lives each year in the UK. MRI scans can detect some aggressive breast cancers even earlier than mammograms.

Unfortunately, MRI scans are expensive, and so the NHS uses them only to screen women at a high risk of developing breast cancer. New evidence suggests that MRI scans can be abbreviated to reduce their cost to the NHS, without affecting their ability to accurately display breast cancers.

FAST MRI is an abbreviated form of MRI which takes less time to acquire (3 vs 20 mins on the scanner) and to interpret (1 vs 10 mins). Unlike mammograms, FAST MRI scans can identify aggressive cancers irrespective of breast density – a trait found more commonly in younger women. Therefore, we are developing FAST MRI for women who are having their first screening by the NHS Breast Screening Programme. We wish to find out if FAST MRI could find aggressive cancers even earlier and smaller for these women because early detection of breast cancer saves lives.

FAST MRI Studies:

DYAMOND

OPERA

ENAID

Mapping the learning curve of novice FAST MRI readers

Quality Assurance/Technical Development

Reader Training Programme: Multi-Centre Study

Reader Training Development: Single-Centre Study

Further Info:

If you would like more information about the FAST MRI research programme, or would like to find out how you can get involved, please contact FASTMRI@nbt.nhs.uk.

You can also get to know the researchers and support staff delivering this study by visiting the FAST MRI Research Team page.

The FAST MRI Programme has been developed by a multidisciplinary team of collaborating clinicians, academics and members of the public across the UK, led by North Bristol NHS Trust. Together the FAST MRI team bring a wealth of experience in imaging, research, science and breast cancer screening and treatment.

Early breast cancer detection and diagnosis saves lives. The NHS Breast Screening Programme offers women aged 50-70 years a mammogram every 3 years. By detecting breast cancers before they can be seen or felt, breast screening already saves about 1,300 lives each year in the UK. MRI scans can detect some aggressive breast cancers even earlier than mammograms.

Unfortunately, MRI scans are expensive, and so the NHS uses them only to screen women at a high risk of developing breast cancer. New evidence suggests that MRI scans can be abbreviated to reduce their cost to the NHS, without affecting their ability to accurately display breast cancers.

FAST MRI is an abbreviated form of MRI which takes less time to acquire (3 vs 20 mins on the scanner) and to interpret (1 vs 10 mins). Unlike mammograms, FAST MRI scans can identify aggressive cancers irrespective of breast density – a trait found more commonly in younger women. Therefore, we are developing FAST MRI for women who are having their first screening by the NHS Breast Screening Programme. We wish to find out if FAST MRI could find aggressive cancers even earlier and smaller for these women because early detection of breast cancer saves lives.

Meet the team:

Dr Lyn Jones

Dr Becky Geach

Dr Katherine Klimczak

Sadie Mckeown-Keegan

Dr Sam Harding

Professor Janet Dunn

Dr Andrea Marshall

Professor Sian Taylor-Phillips

Dr Sarah Vinnicombe

Dr Chris Foy

Professor Claire Hulme

Professor Mark Halling-Brown

Dr Elizabeth O’Flynn

Miss Shelley Potter

The BIRCH team

Public Involvement Members

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REACH – The Arm Association for Children with Hand or Arm Deficiency

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Activity Alliance

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Sport England

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British Paralympic Association

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BLESMA (British Limbless Ex-Service Men’s Association)

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Warrington

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Website: www.stepsworldwide.org

Email: info@steps-charity.org.uk

Infection Sciences Contacts

Clinical Lead Infection Sciences/Consultant in Infection (Medical Microbiology)
Dr Isabel Baker

UK Health Security Agency Regional Head of Operations 
Mr Jon Steer

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Mrs Debbie Williams

For complaints or to raise any concerns/issues with services provided by the Infection Sciences laboratory please contact via the following:

Email: ISQuality@nbt.nhs.uk

This email can also be used for general enquiries but please note it is not for sample enquiries, e.g. clinical advice or results.

Address: Infection Sciences Laboratory
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