Guide to services for people with red cell and iron disorders

The North Central London Haemoglobinopathy Coordinating Centre is a leading national unit for investigating and managing transfusion- dependent and transfusion-independent anaemias, and iron disorders. Patients are referred locally, nationally and internationally for tests, treatment and advice. The Centre also houses the largest Red Cell Apheresis Unit (Auto-Rex) in the country.

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

The Centre brings together expertise for sickle cell disease from University College London Hospitals (UCLH), Whittington Health, North Middlesex University Hospital, Royal Free London, Luton and Dunstable University Hospital, and Great Ormond Street Hospital. For thalassaemia the Centre extends to include expertise from across East and West of England. Across the whole network, we have over 4000 patients with sickle cell disease and thalassaemia under regular follow-up.

We are a tertiary referral centre for specialist care. This means that other hospitals or centres may refer their patients to us. The majority of inpatients form the haemoglobinopathy part of the service, while the outpatient and, to a degree, the day care service is more varied.

We also work with the bone marrow transplant team to assess and facilitate stem cell transplants for those 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 4pm to 7pm

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.

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. Ask your 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 – if you are on regular transfusions or red cell exchanges you may have your blood tests performed in Day Care. You should discuss this with a senior member of the day care team. Occasionally, the ambulatory care team may perform blood tests during 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 (staffing permitting).

If you are on a top-up transfusion programme, you can have a blood transfusion out of hours if this has been previously arranged.

• 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.

We are exploring the possibility for routine top-up transfusions in the Ambulatory Care Unit during weekends. Out of hours and in case of a clinical need, the apheresis team can perform urgent automated exchange and the medical team provides manual exchange.

Day Care
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 certain medications – for example pamidronate
• Advice over the telephone where appropriate
• Management of indwelling lines, for example vortex ports.

The Haematology Day Care is situated 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 be suitable to have certain procedures in the Haematology Day Care, such as apheresis or venesection. For more details, speak to your healthcare team.

If you are unwell, you should call the haematology advice line. You may be asked to come to Haematology Day Care where you should be:

• Seen by a doctor
• Offered painkillers and IV fluids as necessary
• Tested for any underlying causes, which may include blood tests, scans and/or X-rays, or referrals to other specialists
• Offered additional medication if needed
• Offered a follow-up appointment at an outpatient clinic (book if not
• already scheduled or bring forward if necessary)
• Offered a return visit to Day Care/GP if needed
• Assessed as to whether you need admission to the ward.

You may also be asked to go to the Emergency Department (A&E) if it is more appropriate to do so or if there is no space to see you in Day Care.

Staffing

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

Prescriptions

You should request your regular prescriptions from your GP, and not Day Care. Prescribing from Day Care disrupts proper monitoring of your condition and medications, as this is done by doctors on shift rather than your usual red cell team. This is especially important if you are receiving high quantities of opiates, where it is safer for one site to issue your prescriptions.

Where the medication needs particular monitoring, for example chelation or hydroxyurea, you should email your CNS a week before you need your medicine. This will give your CNS enough time to order the medicines on the system.

What to do in an emergency

• If you have a non-urgent medical problem or a medical problem unrelated to your red cell/iron condition, such as a rash or a twisted ankle, you should go to your GP or your local Emergency Department (A&E). If necessary, they can always contact us.
• If you have a non-urgent red cell/iron problem or query, you can 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, you should call the haematology advice line. If it is out of hours, call the adult haematology advice line or paediatric helpline (contact details are on page 19).
• The haematology advice line is manned by a personal assistant. They can help you with any administrative queries you may have and will inform your CNS if you have any medical concerns. The CNS should ideally call you back within 30 minutes of receiving your message.
• The nurse may speak to one of the doctors to get further advice.
• You may be advised to attend the Rapid Access Service in Haematology Day Care, go to your GP or the Emergency Department (A&E), or to bring forward your clinic appointment.
• The Rapid Access Service is open for assessments from 9am to 4pm, Monday to Friday, only after a previous discussion with the CNS or medical team. Outside of these times, or if there is no space in the Rapid Access Service, you will need to go to the Emergency Department (A&E).
• Even if you are going to the Emergency Department (A&E), it is always best to call ahead so that we can try to streamline your assessment as much as possible.

Note: If you have an infectious illness, such as cough, cold, diarrhoea, vomiting or chicken pox, don’t come to clinic or Haematology Day Care. You should go to the Emergency Department (A&E) and we will see you there. These seemingly minor illnesses can be very serious for some patients with blood conditions and very poor immune systems. For example, those recovering from chemotherapy or stem cell transplants.

Haematology wards
Haematology ward T16 is located 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 place you directly on a haematology ward at the time of your admission. However, if there are no beds available on haematology wards, you will need to stay on another ward until we have a bed for you. Haematology nurses will still look after you on the ward you are on. And we will make every effort to transfer you to the appropriate ward as soon as possible.

There are open visiting times on all haematology wards.

Extension numbers:

• 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 develop an infection that carries a high risk of transmission to other patients, such as flu, we may move you to an alternative haematology ward or a specialist isolation ward. You may need to remain on that ward for the rest of your hospital stay. But if the infection resolves, we may be able to transfer you back to a haematology ward when a bed becomes available.

Keeping in contact
Your family and friends can contact you directly on your bedside telephone. 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 telephone and enquire about your progress. To keep information about you safe (confidential), we will not be able to give out specific details over the phone.

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, as long as this has been arranged with the nursing staff and that there are facilities available. Children under the age of 16 can’t stay overnight, but they are welcome to visit during the day.

For security, there is an intercom system to gain access to the floors. Visitors will need to press the call button located at the entrance of the ward and wait for the door to be released. They may be asked their name and that 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 seemingly minor illnesses can be very serious for some patients with blood conditions and very poor immune systems. For example, those recovering from chemotherapy or stem cell transplants.

Ward rounds
Ward rounds are carried out on a daily basis by the junior doctors (specialist registrars and senior house officers). On Tuesday mornings, when the Red Cell Clinics take place, the specialist registrar may only be able to see those patients on the wards who are unwell. However, the senior house officer will review the rest of the patients and 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 on Tuesday afternoons and Friday mornings. These timings may change depending on the consultants’ other commitments.

Paediatric patients (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). 

Day Care for children is on ward T11 East; inpatient care is on ward T11 South (for children younger than 13 years of age) and T12 South (for children 13 years and over). They are located in the Tower, University College Hospital, 235 Euston Road, London NW1 2BU.

There is no Rapid Access facility on wards T11 South or T12 South. Children need an appointment to be seen or treated there.

Children admitted to the paediatric ward are under the care of the general paediatric team 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 still being seen in the Paediatric Outpatient Clinic. Friends who visit children on the ward need to be accompanied by an adult.

All our school-age children who are on regular transfusion are transfused on the wards during the weekends. Nurses are trained to perform manual red cell exchanges where necessary.

• T12 South extension number: 71201
  • visiting times: unrestricted for parents
• T11 South and East extension numbers: 71100 and 71186
  • visiting times: unrestricted for parents

Ward rounds
Paediatric ward rounds take place every morning and are attended by the consultant paediatrician and their team. The red cell haematology registrar (the second in command to the red cell consultant) will also review all patients each day and liaise with the paediatric team. The red cell consultant will visit the children on their ward rounds at least twice a week.

What to do in an emergency
Bring your child to the Emergency Department (A&E) at UCLH and call the haematology advice line to let the team know you are coming (see page 19 for contact details). A paediatric specialist will review your child and discuss their care and/or treatment options with the haematologist on call.

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

• Dr Emma Drasar
• Dr Perla Eleftheriou (adult lead)
• Dr Ryan Mullally
• Professor John Porter
• 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), and 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 (it can be sooner if a patient is unwell).

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

Nursing team
The nurses on our haematology wards have specialist haematology experience. The paediatric wards nurses have specialist paediatric training, with several of them also specialising in looking after people with red cell conditions.

We also have link nurses who are able to perform, and train others to perform, manual red cell exchanges on children.

Our nursing team includes:

• Mr Stephen Rowley, Lead Nurse for Haematology
• Ms Helen Keane, Charge Nurse for Supportive Care and Apheresis
• Mr George Trandafir and Ms Linda Pilcher, Supportive Care Nurses
• and Auto-REX Coordinators
• Mr Siyonge Mulope, Charge Nurse for Paediatric Day Care
• Ms Bernadette Hylton, Matron Haemoglobinopathies
• Ms Alex Saville and Ms Enitan Roberts, Clinical Nurse Specialists, Adult Haemoglobinopathies
• Mr Christopher Dean, Clinical Nurse Specialist, Paediatric Haemoglobinopathies.

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

Multidisciplinary team
Other teams involved in your care during your hospital stay may include the pain control team (acute or chronic), the palliative care team, clinical psychologist, pharmacists, specialist nurses, physiotherapists, occupational therapists, dietitians, welfare rights advisor, counsellors, and speech and language therapists. They are all part of the multidisciplinary team caring for you. If you need to be reviewed by other specialist medical teams during your stay or as an outpatient, the team looking after you will discuss this with you.

The red cell team has dedicated adult clinical psychologists, Ms Helen de Marco and Ms Ruth Anderson, who can arrange to see you either on a ward or as an outpatient.

The paediatric team also includes play specialists, school teachers and a health visitor.

Students
As we are a teaching hospital, student doctors, nurses, physiotherapists, occupational therapists and other healthcare workers may work with your team under their supervision. If you do not want to be seen by students, please tell your team – this will not affect your care in any way.

Complementary therapies
Members of the complementary therapy team regularly visit the wards on weekdays and offer reflexology, reiki, aromatherapy, relaxation and massage. Treatments, which are free of charge, take place either at the bedside or in the treatment room.

If you would like to know more about the service and available therapies, please speak to your nurse.

Infection control
Visitors and members of staff are not allowed on the wards or in Day Care if they have viral symptoms, such as cough, cold, flu, mumps, measles or chicken pox. If you or your recent visitor develop viral symptoms, please tell your nurse.

Visitors and members of staff are not allowed on the wards if they have had diarrhoea in the past 48 hours. Some of the patients with blood conditions are at high risk of dangerous complications due to infections, and outbreaks 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. Find out more here.

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

There is no car park at the hospital and UCLH is located within the Congestion Charge and Ultra Low Emission (ULEZ) zones. There is metered street parking nearby that is free on Sundays, and from Monday to Friday between 6.30pm and 8.30pm.

To find out if you qualify for help with hospital travel costs or reclaiming the congestion charge, please ask your nurse for our leaflets.

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.

If you would like to keep any tablets, phones or laptops in your room, please take responsibility for keeping them safe. You can also ask your nurse to lock your room if you are leaving it for any period of time. Unfortunately, theft does occur and has been reported when patients were using the ensuite bathrooms.

There is a cashpoint near the pharmacy on the ground floor of the Tower. There are also cashpoints near the hospital – one outside Sainsbury’s on Hampstead Road, and one outside Tesco on Tottenham Court Road.

Our interpreting services support health professionals in providing high-quality service to those 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 24 hours per day, 365 days per year. An interpreter is available within a minute of a staff member giving their details to the call centre staff.

We recognise that there are occasions when telephone interpreting may not be suitable. We have also made arrangements for those who need face-to-face interpreters, British Sign Language (BSL) interpreters or DeafBlind Communicators. Visit the Language Line Services website or call Client Services on 0800 169 2879 for more information.

Our benefits and welfare advisers offer support on all aspects of welfare and benefits. Please contact the Macmillan Support and Information Service at the Cancer Centre on 020 3447 8663 for further information, or 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 above address:

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

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

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 8861 7795
Website: sicklecellsociety.org

UK Thalassaemia Society
Tel: 020 8882 0011
Email: office@ukts.org
Website: ukts.org

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

• Haematology admin team: uclh.redcelladminteam@nhs.net
• Haematology clinical nurse specialists (CNSs): uclh.redcell.cnsteam@nhs.net
• Haematology advice line (office hours, adults and children): 020 3447 7359
• Adult haematology advice line (out of hours): 07852 220 900
• Paediatric helpline (out of hours):
  • nurse in charge 07961 081 645
  • ward T11 south 020 3456 7890 ext. 71103 or 71143

• Apheresis: 020 3447 1803

Address:
The Joint Red Cell Unit
Department of Haematology
3rd Floor West, 250 Euston Rd
London
NW1 2PG

Consultants:

• Dr Emma Drasar
• Dr Andrea Leigh
• Dr Ryan Mullally
• Professor John Porter
• Dr Sara Trompeter

Matron:

• Bernadette Hylton

Specialist nurses:

• Christopher Dean
• Enitan Roberts
• Alexandra Saville