Guide to services for people with red cell and iron disorders : University College London Hospitals NHS Foundation Trust

Haemoglobinopathies such as sickle cell and thalassaemia.
Iron disorders including haemochromatosis.
Enzymopathies, for example pyruvate kinase deficiency.
Membrane disorders, such as hereditary spherocytosis.
Secondary polycythaemia.
Non-cancerous blood conditions in children younger than 12 years old (excluding bleeding or clotting problems).

UCLH is a tertiary referral centre for specialist care. This means that other hospitals or centres can refer their patients to us for our specialised services. Most of the patients staying in the hospital have sickle cell disorder or thalassemia. In the outpatient department and in Day Care, we help with a variety of conditions.

We also work with the bone marrow transplant team to help assess and arrange stem cell transplants and gene therapy for people with haemoglobin disorders.

Adult Clinics
4th floor, University College Hospital Macmillan Cancer Centre
Huntley Street, London WC1E 6AG

Tuesday mornings 8.30am to 12pm (noon).
Wednesday evenings 2pm to 6pm.

Paediatric Clinic
Lower ground floor, Elizabeth Garrett Anderson (EGA) Wing
University College Hospital, 235 Euston Road, London NW1 2BU (access from Grafton Way)

Monday afternoons 2pm to 5pm.

Adolescent Transplant Clinic
3rd floor, University College Hospital Macmillan Cancer Centre
Huntley Street, London WC1E 6AG

Monday afternoons 1pm to 2pm.

Paediatric Transcranial Doppler Clinic
Lower ground floor, Elizabeth Garrett Anderson (EGA) Wing University College Hospital, 235 Euston Road, London NW1 2BU

First Thursday morning of each month.

You can make or change your clinic appointment by calling the haematology advice line (see the contact details section).

If you need a blood test, there are a number of options available:

Basement of the Cancer Centre, open from 8.30am to 4.45pm, Monday to Friday. The test results are available to staff within a few minutes.

Please note that you will need to book your blood test at the Cancer Centre or via swiftqueue. Ask your healthcare team for details.

Children who are comfortable having their blood taken can have their test there.

Podium level of the main hospital (Tower building). Please note that the results are not available instantly there.
Adult Day Care – provides blood tests for people on regular transfusions or red cell exchanges. You should discuss having a blood test here with a senior member of the day care team. Occasionally, the ambulatory care team does blood tests here at the weekend.
Paediatric Clinic – children can have a blood test during their clinic appointment. There are also blood test drop-ins Monday to Friday, 9am to 5pm (only if there are staff available).

If you are on a top-up transfusion programme, you can have a blood transfusion out of hour. This can only happen if you arrange it in advance.

For patients up to 12 years old – ward T11 East.
For patients aged 13 to 18 – ward T12 South.
For patients aged 18 or over – there is a bed on a haematology ward that can be booked for those who want their transfusions overnight.

The apheresis team can do urgent automated exchange out of hours and if there's a clinical need.

The Haematology Day Care Unit provides the following services for adults with red cell conditions:

Blood tests.
Blood transfusion and venesection.
Red cell exchange transfusion, both manual and automated.
Administration of some medicines – for example pamidronate.
Advice over the telephone where appropriate.
Management of indwelling lines, for example vortex ports.

The Haematology Day Care is on the 4th floor of the Cancer Centre, Huntley Street, London WC1E 6AG. It is open from Monday to Friday, between 8.30am and 7pm.

Some patients under 18 years of age may have certain procedures, such as apheresis or venesection, in the Haematology Day Care. For more details, speak to your healthcare team.

If you are unwell, you should call the haematology advice line. We may ask you to come to Haematology Day Care where we will:

Get a doctor to see you.
Offer you painkillers and IV fluids if needed.
Test you for any underlying causes. These tests may include blood tests, scans and/or X-rays, or referrals to other specialists.
Offer you additional medicine if needed.
Offer you a follow-up appointment at an outpatient clinic (we will either book you an appointment or reschedule one that’s already booked).
Offer you a return visit to Day Care/GP if needed.
Assess whether you need to be admitted to the ward.

We are more likely to ask you to go to the Emergency Department (A&E).

There is a junior doctor on site who can communicate with the red cell team as needed.
There is a day unit manager, two senior nurses, staff nurses and other support staff.
A lead apheresis nurse manages the Apheresis Unit in Day Care and the Auto-REX programme.

Please ask your GP for your regular prescriptions, rather than getting them from Day Care. This helps make sure that your condition and medicines are closely monitored by your usual healthcare team. This is particularly important if you take medicines like opiates.

If your medicine needs monitoring (such as chelation or hydroxyurea), make sure that you email your clinical nurse specialist (CNS) a week before you need it. This will give your CNS enough time to order the medicines.

If your medical issue is not urgent nor related to your red cell or iron condition (such a rash or a twisted ankle):
- Visit your GP or go to your local Emergency Department (A&E).
- They can contact us for further help if needed.
If you have a non-urgent red cell or iron problem or query:
- Email your CNS or ask for your outpatient appointment to be brought forward.
- You may also be able to have a review in Day Care.
If you are unwell:
- Call the haematology advice line.
- If it is out of hours, call the adult haematology advice line or paediatric helpline (see the contact details section).

A personal assistant will answer your call to the haematology advice line. They can help you with administrative queries. They will tell your CNS if you have a medical concerns. Your CNS should call you back within 30 minutes of getting your message. Your CNS may speak to one of the doctors to get further advice.

It is always best to call ahead even if you go to A&E. This is so that we can try to streamline your assessment.

Note: If you have an infectious illness, such as cough, cold, diarrhoea, vomiting or chicken pox, do not come to clinic or Haematology Day Care. You should go to the A&E and we will come to see you there. These illnesses can be serious for patients with blood conditions who may have poor immune systems. They are very serious for people recovering from chemotherapy or stem cell transplants.

Haematology ward T16 is in the Tower, University College Hospital, 235 Euston Road, London NW1 2BU.

The other haematology wards are in the Grafton Way Building on Grafton Way, London WC1E 6AS.

We will do our best to admit you to a haematology ward when you arrive at the hospital. If there are no beds available on haematology wards, we will admit you to another ward until we have a bed for you. Haematology nurses will still look after you on the ward you are on. We will make every effort to transfer you to a haematology ward as soon as possible.

There are open visiting times on all haematology wards.

Ward numbers

To reach the right ward, please call 020 3456 7890. When connected, tell the operator the extension number you need from the list below.

T16 South: 71686
T16 North: 71684
Grafton Way Building Level 2 North: 68137
Grafton Way Building Level 2 East: 68177
Grafton Way Building Level 3 North: 68149
Grafton Way Building Level 3 East: 68150
Grafton Way Building Level 4 East: 68172

If you get an infection that could spread to other patients, like the flu, we might move you to a different haematology ward or a special isolation ward. This is to keep everyone safe. You may stay on that ward for the rest of the time you are admitted to the hospital. If the infection resolves, we may transfer you back to a haematology ward when a bed is available.

Keeping in contact

Your family and friends can contact you on your bedside phone. These calls are charged at a premium rate. Please ask your nurse for more information. You can use your mobile but we ask all patients and visitors to consider others and keep their phones on silent.

Family and friends are welcome to phone to find out how you are. However, we will not give specific details about you over the phone. This is to keep your information confidential.

Mail is delivered to the wards each weekday. To make sure it’s delivered to you safely, your name and the name of the ward must be put on all correspondence. You can place any stamped post you would like to send in the tray at the reception desk.

There are no restrictions on visiting times. A relative or carer can stay with you in your room. This will only be if it has been arranged with the nursing staff and there are facilities available. Children under the age of 16 cannot stay overnight, but they are welcome to visit during the day.

For security, there is an intercom system to gain access to the wards. Visitors will need to press the call button located at the entrance of the ward and wait for the door to be released. They might be asked for their name and the name of the person they are visiting.

Note: We ask visitors not to come to haematology wards if they have an infectious illness, such as cough, cold, diarrhoea, vomiting or chicken pox. These illnesses can be very serious for some patients with blood conditions who have a poor immune system. For example, those recovering from chemotherapy or stem cell transplants.

Ward rounds

Junior doctors (specialist registrars and senior house officers) do the ward rounds. On Tuesday mornings, when the Red Cell Clinics take place, the specialist registrar may only see patients on the wards who are unwell. The senior house officer will review the rest of the patients. They report to the specialist registrar after the ward round and throughout the day.

The consultant ward rounds take place after the red cell MDT (multidisciplinary team) meetings. These happen on Tuesday afternoons and Friday mornings. These timings may change depending on the consultants’ other commitments.

Children (up to 18 years of age) may have their blood test at the:

Cancer Centre
Podium level of the main hospital, or
Paediatric Clinic (suitable for younger children).

Children’s Day Care is on ward T11 East. It is in the Tower, University College Hospital, 235 Euston Road, London NW1 2BU.

Children admitted to the children’s (paediatric) ward are under the care of the general paediatric team. This is with support from the red cell team. If you are 18 or older, you will be admitted to an adult ward even if you are normally seen in the Paediatric Outpatient Clinic. Friends who visit children on the ward must have an adult with them.

Nurses are trained to perform manual red cell exchanges where necessary.

T12 South (for children 13 years and over)
020 3447 1200
Visiting times: unrestricted for parents

T11 South (for children younger than 13 years of age)
020 3447 1100
Visiting times: unrestricted for parents

Ward rounds

The following healthcare professionals will visit your child on the ward:

The paediatric team, including the consultant paediatrician - they will visit your child every morning.
The red cell haematology registrar - they will review your child each day. They work with the paediatric team and are second in command to the red cell consultant.
The red cell consultant – they will visit your child at least twice a week.

In an emergency:

Bring your child to the UCLH Children’s Emergency Department (A&E).
Call the haematology advice line to let the team know you are coming (see the contact details section).

A paediatric specialist will review your child. They will discuss your child's care and/or treatment options with the on-call haematologist.

Medical team
There are four consultants who are responsible for inpatients:

Dr Emma Drasar
Dr Perla Eleftheriou (adult lead)
Dr Ryan Mullally
Dr Sara Trompeter (paediatric lead).

They take turns attending the wards, usually on a two-weekly basis. This means that they take responsibility for what is happening on the wards 24 hours a day in a given two-week period.

There are two other consultants who attend the paediatric haematology clinics:

Dr Andrea Leigh (consultant paediatrician)
Professor Fenella Kirkham (paediatric neurologist who performs the transcranial Doppler scanning).

The paediatric patients are cared for jointly by the haematology and paediatric team. There are dedicated specialists who support our patients, including:

Dr Walker (cardiology)
Dr Naik (diabetes)
Mr Ralph (andrology)
Dr Suri (hepatology)
Dr Waung (bone health).

During working hours there are:

junior doctors (a dedicated senior house officer and a specialist
registrar) in both the red cell and paediatric teams
a haematology adult day care registrar
an advanced nurse practitioner in haematology.

They review patients during their daily ward rounds and report to the consultant afterwards. They will report to a consultant sooner if a patient is unwell.

Out of hours, there is usually one or two senior house officers and a registrar caring for haematology patients. This number may be higher during the weekend day time shifts.

The nurses on our haematology wards have specialist haematology experience. The paediatric wards nurses have specialist paediatric training. Several of them also specialise in looking after people with red cell conditions.

Our nursing team includes:

Mr Stephen Rowley, Senior Matron for Haematology
Ms Helen Keane, Matron for Supportive Care and Apheresis
Ms Valeria Perli, Charge Nurse for Paediatric Day Care
Ms Bernadette Hylton, Matron for Haemoglobinopathies
Ms Alex Saville and Ms Enitan Roberts, Clinical Nurse Specialists for Adult Haemoglobinopathies
Mr Christopher Dean, Clinical Nurse Specialist, Paediatric Haemoglobinopathies
Supportive Care and Apheresis Nurses.

You can identify our nursing staff by the uniform they wear:

Dark red: Divisional Senior Nurse (Matron)

Navy blue: Charge Nurse/Deputy Sister/Clinical Practice Facilitator, Clinical Nurse Specialists

Royal blue: Staff Nurse

Pale blue: Housekeepers.

Other teams involved in your care during your hospital stay may include:

Pain control team (acute or chronic)
Palliative care team
Clinical psychologist
Pharmacists
Specialist nurses
Physiotherapists
Occupational therapists
Dietitians
Welfare rights advisor
Speech and language therapists.

They are all part of the multidisciplinary team caring for you. If you need to see other specialist doctors during your stay or as an outpatient, the team taking care of you will talk with you about it.

The red cell team has dedicated adult clinical psychologists, who can arrange to see you either on a ward or as an outpatient. The paediatric team also includes play specialists, teachers and a health visitor.

There are research nurses working in the adult and paediatric teams. They can tell you about research projects that you might be eligible for.

Students

UCLH is a teaching hospital. This means that student healthcare professionals, such as doctors and nurses, may also care for you. They are supervised by qualified members of staff. If you do not want to be seen by students, please tell your team – this will not affect your care in any way.

Complementary therapists regularly visit the wards on weekdays. They offer reflexology, reiki, aromatherapy, relaxation and massage. These treatments, which are free of charge, take place either at your bedside or in a treatment room.

If you would like to know more about the service that are available therapies, please speak to your nurse or visit our complementary therapy web page.

People may not be allowed to visit if they’ve recently had symptoms of an infection, such as diarrhoea, vomiting, cold or flu. Please ask your visitor to call the ward for advice before coming. Some patients with blood conditions are at high risk of dangerous complications due to infections and outbreaks of infections have caused units to close in the past. We ask all visitors to use the hand gel provided when entering and leaving the wards.

There are good transport links to travel to our hospitals. For more information, please visit our website: uclh.nhs.uk

To plan your journey, visit the Transport for London website.

There is no car park at the hospital. There is a metered street parking nearby that is free on Sundays, and from Monday to Friday between 6.30pm and 8.30pm.

UCLH is located within the Congestion Charge and Ultra Low Emission (ULEZ) zones. Our web pages have more information about reclaiming the congestion charge and ULEZ charge. We also have a web page about help with hospital travel costs. You can ask your nurse to print you copies of these web pages.

Please don’t bring large amounts of money or valuables for your hospital stay. If this is unavoidable, we may ask your relatives to take any valuable items home.

Please take responsibility for keeping tablets, phones or laptops safe in your room. You can ask your nurse to lock your room if you are leaving it for a while. Unfortunately, theft has been reported when patients were using their ensuite bathrooms.

There is a cashpoint near the pharmacy on the ground floor of the Tower. There are also cashpoints near the hospital:

Outside Sainsbury’s on Hampstead Road
Outside Tesco on Tottenham Court Road.

Our interpreting services support healthcare professionals provide care for people whose first language is not English. This improves access to health services for those who have language needs.

Our telephone interpreting system offers over 170 languages and dialects. The service is available 24 hours per day, 365 days per year. An interpreter is available within a minute of a staff member contacting the service.

We recognise that there may be times when telephone interpreting may not be suitable. We can arrange face-to-face interpreters, British Sign Language (BSL) interpreters or DeafBlind Communicators for those who need them. For more information on the Language Line Services:

Visit the Language Line Services website
Call 0800 169 2879.

Our advisers offer support on all aspects of welfare and benefits. For more information:

Drop in to the Macmillan Support and Information Service, ground floor of the Cancer Centre.
Call 020 3447 8663.
Visit our welfare and benefit web page.
Ask one of the ward staff.

Your comments are important to us as they allow us to continually improve our service.

You may choose to give us your feedback in person. If so, please speak to one of our nursing or medical leads.

If you prefer to put something in writing, you can use one of our comment slips available in all clinical areas. Or you can write to one of the lead members of staff at the address provided in our contact details section:

For Supportive Care: Ms Helen Keane
For nursing issues on the adult wards: Mr Steven Rowley
For nursing issues on the paediatric wards: Ms Joanna Turner
For medical issues: Dr Eleftheriou (adults) and Dr Trompeter (paediatrics).

You can also contact the Patient Advice and Liaison Service (PALS) with your comments:

Address:

University College Hospital, Ground Floor Podium, 235 Euston Road, London, NW1 2BU

Telephone: 020 3447 3002

Email: uclh.PALS@nhs.net

Sickle Cell Society

Tel: 020 8961 7795

Email: info@sicklecellsociety.org

UK Thalassaemia Society

Tel: 020 8882 0011

Email: office@ukts.org

University College London Hospitals NHS Foundation Trust cannot accept responsibility for information provided by external organisations.

Haematology admin team