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We aim to offer an excellent service to all our patients. This information leaflet outlines the service we provide and how you access them. If you have any other questions or concerns, please do not hesitate to speak to the team caring for you.

Patients with haemoglobin disorders from outside Ä¢¹½tvÊÓƵ who live in the North East and Yorkshire region may be invited to attend SJUH for specialist Annual Review clinics. You will continue to have your routine outpatient appointments at your local hospital.

Red Cell Outpatient Clinic

The Red Cell Clinics are on Tuesday and Friday from 9am to 12pm, in Oncology Outpatients, Level 1, Bexley Wing. Clinics are the main place to discuss and review your red cell-related health concerns. Patients will be offered routine follow-up appointments, typically three monthly, six monthly, or annually. In addition, all patients can expect one annual review appointment per year.

These are scheduled for 45 minutes, during which your doctor and nurse will carry out a holistic review and discuss any further investigations and/or referrals required. The Red Cell Clinics are run by consultant haematologists, clinical nurse specialists (CNS)and sometimes a specialist registrar. You will receive an appointment letter and a reminder text message unless the booking was made less than 72 hours before the actual appointment. Appointments can be face-to-face or via the telephone.

Preparing for your Red Cell Clinic appointment

We ask you to keep to your appointment time

• By arriving at least 15 minutes before your scheduled face-to-face appointment to allow the health care assistant to take your observations.
• By having your phone near you and in an area with good reception if you have a telephone consultation.

We aim to call you at your appointed time but it can be earlier or later depending on how busy the clinic is.

Please note that our call usually shows as ‘private or number unknown’.

Our telephone number is a generic number which ends in three nines, to protect confidentiality – you cannot call back on this number.

Shared decision-making

Please prepare for the consultation by writing down in advance what you would like to discuss and bringing a record of your medications with you. People who are actively involved in decisions about their care do best.

We want to support you to make informed choices. We also understand that you may sometimes change your mind about decisions you have made. Feel free to ask questions of your doctors or nurses and make suggestions.

Joint obstetric haematology clinic

Our joint specialist clinic is separate from the regular outpatient clinics and the focus is on pregnancy (obstetrics). It is held once a month on a Thursday morning in the antenatal clinic at the Clarendon Wing, LGI. The clinics are run by two consultants, one from the Red Cell Team and one from Obstetrics.

Frequently asked questions

• How do I change or cancel my appointment?
  Telephone: 0113 206 7966 to change or cancel your appointment.
• What if I am late?
  Coming late is disruptive and has a knock-on effect on other patients. Priority will be given to those who have arrived on their scheduled time. You might be asked to wait or come back later. If you are more than one hour late without prior notification, we may cancel your appointment and reschedule for another day.
• Do I need to have a blood test before my appointment?
  You will usually need to have blood tests before your clinic appointment and your clinic letter should tell you this. Most of our blood tests are requested electronically so you can attend any phlebotomy point at Ä¢¹½tvÊÓƵ Teaching Hospitals.

Haematology Supportive Care Unit (Ward J87)

The Haematology Day Unit, also referred to as the Supportive Care Unit or ward J87, is located in the Haematology Outpatient Department. The unit provides treatment for haematology patients, including: – blood transfusion – venesection (phlebotomy) – a procedure where blood is drawn out from the vein for treatment of a variety of blood disorders and some medical treatments for haematology patients requiring a drip.

The unit is open

• Monday to Friday, 8am to 6.30pm (excluding Bank Holidays)
• Weekends 8am to 4.30pm

Please note that at present, you will not receive an appointment letter or text message reminder for treatment in the Haematology Supportive Care Unit.

Frequently asked questions

• Can I have my blood sample taken on the same day that I have my transfusion?
  In exceptional circumstances we can take your blood sample on the same day as your transfusion. Otherwise, blood tests should be done two days before your scheduled transfusion day to allow us to crossmatch effectively.
• Can I see my doctor while having my treatment?
  If you would like to see one of the doctors, you will need to book a clinic appointment or a telephone clinic appointment. The Haematology Day Unit is a treatment unit only. The nursing staff may ask your doctor to come to the unit for an urgent review or a treatment-related question, but not for a full consultation. We provide clinical training where our students get practical experience by treating patients. Please tell your doctor or nurse if you do not want students to be involved in your care. Your treatment will not be affected by your decision.

The Therapeutic Apheresis Unit

The Therapeutic Apheresis Suite is located on Level 3, Bexley Wing and provides automated red blood cell exchange transfusion, stem cell collection and plasma exchange procedures. Treatment is by appointment only. Patients receiving regular exchange blood transfusions will receive their next appointment directly from the Apheresis Team.

If you are on a regular programme and need to change your appointment, please telephone: 0113 206 8131.

Please ensure that you are warm and well hydrated when you attend. You should also bring a small supply of analgesia or other usual medicines that you may need on the day.

Please attend your blood transfusion appointments on time and try not cancel with less than 24 hours notice. Also, please notify the Apheresis Unit if you are late so that we can see if there is still a slot for the same day. We run a very tight schedule and one chair is used several times per day. If you arrive more than one hour late without prior notice, there may no longer be a place for that day, and we will have to cancel the transfusion.

Blood tests and other investigations

Blood tests

Your team will ask you to have a blood test before or after an appointment. Blood tests can be taken at the Phlebotomy Department on Level 1 or 3 of the Bexley Wing on a walk-in basis.

• Level 3 Phlebotomy room opening hours: Monday to Friday 9am to 12pm then 1.30pm to 4.30pm
• Level 1 Phlebotomy room opening hours: Monday to Friday 8.30am to 4.45pm

Please note

• You do not need a blood form to attend the Phlebotomy Department – requests are made electronically.
• Some people have blood tests for different specialists, please mention that your blood test is for haematology.
• If you have been asked to provide a urine sample, make sure you have an appropriate container and ask the phlebotomist to print the sticker to label your sample.
• If you have a port or a PICC (peripherally inserted central catheter) line, you will need to book into the haematology supportive care unit for an appointment with the nurses.

Other investigations

Your doctor may request imaging tests such as X-rays, MRI or ultrasound to assist in your care.

X-rays of the chest and of individual bones are performed in the X-ray department on the ground floor of the Bexley Wing, Monday to Friday, 8am to 4.30pm. Those X-rays are performed on a walk-in basis and the department will not send an appointment letter.

Other investigations are by appointment only and you will receive an appointment letter.

Inpatients

You may need to be admitted to hospital for a procedure or for urgent treatment. Admission usually takes place following a review in A&E or our assessment area J95 on level 5 Bexley Wing. Red cell patients are usually admitted to one of two haematology wards at SJUH.

Ward contact details

You may be placed on another ward in Bexley Wing if there are no beds available on the haematology wards, but we will try to relocate you as soon as possible.

What happens during an inpatient stay?

You will be admitted under the care of a red cell/myeloid consultant haematologist. A consultant will review you and confirm your management plan within 24 hours of admission. Report any new symptoms and have any questions ready and do not leave the ward unnecessarily. On Mondays and Thursdays, a red cell or myeloid consultant will lead the ward round. As an inpatient, your primary point of contact is your named ward nurse or the ward doctor. They will liaise directly with senior members of staff if require. All medication is kept by the nurses to avoid accidental dosing errors. If you bring in any medication from home, please tell your ward nurse.

Please tell the nurses or doctors looking after you if you know that you have an individual pain management plan. This will have been discussed at a red cell clinic appointment and you should have received a copy of it. If so, it will also be attached to your electronic patient record at the hospital.

Discharge from hospital is a medical decision. Because of the bed pressures in the NHS, we are not able to offer a prolonged stay for recuperation. ‘Fit for discharge’ is an assessment based on factors such as your mobility, independence and need for intravenous medication. Your planned discharge date will be discussed with you in advance. We will normally provide you with a limited amount of medication that you may need ‘to take out’ (TTO).

Additional support services

The Red Cell Team offers support for adults with sickle cell, thalassaemia, rare inherited anaemias (RIA) and other red cell conditions who are under the care of Ä¢¹½tvÊÓƵ Teaching Hospitals.

Psychology support

We know that living with a long-term condition like Sickle Cell or Thalassaemia can have an impact on many different aspects of life and can sometimes make it very difficult to cope. It can present stressful challenges and can affect people in many different ways.

Talking therapy can be helpful in coping with the physical, practical and emotional consequences of your condition. It can form an important part of your overall care. For this reason, clinical psychologists are a key member of most specialist teams. Seeing a psychologist is a normal part of care for many people, just like seeing any other healthcare professional. The psychologist you see will have an understanding of your condition and the psychological impact of both the condition and the treatment you receive. Your doctor or nurse will offer you the choice of referral to the psychologist.

You can also contact the specialist nurses if you would like to be referred. Initial assessment may result in signposting to other services that have been assessed as the most suitable to your individual needs.

Patient Support Groups

Please ask your team for details of any current patient support groups.

Pastoral, Spiritual, and Religious Support

The Chaplaincy team provide 24-hour care and support relating to things that give shape and meaning to people’s lives. Our chaplains and non-religious pastoral carers are trained, experienced professionals providing individualised pastoral, spiritual and religious care to patients, visitors, and staff, offering advice and support around any matters of religion and belief. We support people of all faiths and beliefs, or anyone who would like someone to talk to.

Our Chaplains support inpatients and outpatients as well as carers and family members.

If you require a chaplain or pastoral carer urgently, please ask a staff member to call the hospital switchboard. To personalise your care, please let the staff member know if you have any particular needs.

Requests for prescriptions and support letters

As per NHS regulations, your regular medications should be obtained from your GP. Exceptions include hydroxycarbamide and iron chelators which need specialist monitoring and are hospital prescribed. Please inform your consultant or CNS if your GP cannot or will not prescribe certain medications, so that we can liaise with your surgery.

We unable to offer a rapid prescription service. You may be subject to prescription charges even if St James’s University Hospital provides you with a prescription (TTO’s excluded). If you do not hold an exception certificate, consider buying an NHS Prescription Prepayment Certificate, which is often cheaper than paying per prescription ()

If you find that you are running out of a treatment prescribed by the hospital, and it will not last until your next red cell clinic appointment please telephone the haematology supportive care unit on 0113 206 9187 and ask for an urgent doctor review appointment. You will need to have your blood tests done prior to the appointment.

Support letters

We are happy to provide letters to support applications for further education, housing, benefits, mobility allowances etc. We can also provide travel letters for air travel and complete in-flight oxygen requests.

To request a support letter please call the haematology secretaries on 0113 206 8497 or the CNS on 0113 206 8236.

Please state clearly what you need the support letter for (for example, Personal Independence Payment (PIP), housing) and highlight any specific problems encountered (for example, specific housing issues or lack of understanding by employer). We aim to return a personalised support letter within four weeks. A standard letter or statement with general information and your personal details can usually be provided within a week.

Urgent Contact Details

If you are unwell with a red cell related problem, and think you need clinical assessment and possibly admission, telephone SJUH switchboard on 0113 243 3144 and ask for the oncology bleep holder. The nurse practitioners on our haematology/oncology assessment area are available 24 hours a day and can give advice, as well as arrange a clinical review and hospital admission through ward J95 if necessary.

In an emergency, dial 999 or go straight to Accident and Emergency.

During working hours, you can also contact the nurse specialist for advice on telephone number 0113 206 8236 but if your health concern is urgent and related to your red cell condition please call the 24 hour assessment area contact as above.

Contact us

The contact details below are non-emergency and available during office hours only, excluding Bank Holidays.

Further information

The Red Cell Team aims to deliver high-quality, safe and friendly care in accordance with best-practice clinical guidelines. Feedback is valuable for improvement of the services.
The department will circulate annual questionnaires among haemoglobin disorder service users. We are recruiting more patient representatives to participate in service improvement meetings so do let us know if you are interested.

We appreciate feedback, positive or negative, to the team or services, preferably in writing. When you have a concern or complaint, the sooner you report your concern, the better we can investigate it.

If possible, tell someone as soon as you are aware of the issue. In many cases the Nurse, Charge Nurse, Ward Sister, Matron, Doctor or Receptionist will be able to sort out your issue straight away or provide information, clarification or advice to help you decide what to do next.

How can I raise a concern or give a compliment?

You can approach any team member personally or write or email the PALS team.

Useful Information